PAZA – Episode 07

PAZA Podcast E07

Financial Inclusion for Women with Disabilities: a key to economic empowerment and ending economic injustices among women with disabilities.

Recorded September 30, 2020

Full Audio-Text Transcription

(MUSIC) Intro

Click above for Paza! episode 7

Hi, I am Lizzie Kiama, welcome to PAZA! Conversations with women with disabilities globally. PAZA! a Swahili word meaning to amplify is an initiative by This Ability Trust. PAZA! seeks to document and create visibility for the experiences of women and girls with disabilities.

Join our conversations on Twitter @pazapodcast, you can also follow This Ability on Twitter an Instagram @this_ability_ ke and on Facebook

Now, let’s get into today’s topic of discussion.

Lizzie: So the topic of today is Financial Inclusion for Women with Disabilities; a key to economic empowerment and ending economic and injustices among women with disabilities. And on this seventh episode of the PAZA podcast, we are very pleased to be joined by Juliet Muema and Margaret Kimani and I will let them introduce themselves. Juliet, do you mind going first?

Juliet: I am a woman living with disability. I’m visually impaired. And I’m also a business woman. I’ve been in business for the last five years. And I am happy to be a part of this team this morning.

Margaret:  Good morning, everyone. My names are Margaret Kimani. And I take care of women, youth and people living with disability at State Bank of Mauritius, in Kenya we just summarize it as SBM Bank and I’m very pleased to be here.

Lizzie: Great. Thank you both. So according to some statistics we know that, for example, the World Health Organization (WHO) speaks about to 15% of the global population being persons with disabilities. And then we also know, statistics show the female global population, 20% of those are made up of women with disabilities. And that women comprise of 75% of all persons with disabilities in low and middle income countries.

So it’s important for us to have these conversations particularly now during COVID, that a lot of business, a lot of engagement relies on technology. And that 65 – 70% are women with disabilities, the fact that they live in rural areas is problematic, because access to technology is not common around these areas. So for us, it’s important to have these conversations and understand what financial inclusion means to women with disabilities. And then also, you know, from the expertise, the banking sector for example what does financial mean?

So, I’ll start with you, Juliet, what does financial inclusion mean to you?

Juliet: Financial inclusion, to me would mean accessibility to financial services, for example, credit when I am in need. And funny should mention it, I don’t think there’s any financial institution in Kenya that has something specifically for women with disability. I think even generally for persons living with disability.

Margaret: So for us, financial inclusion is being accessible, being accessible, our services being accessible, and more importantly, being accessible in all the counties. For certain people with disabilities, for them, for some of them, digital solutions are more important to them. Perhaps maybe not fully. But we find, for example, people with living with physical disability, instead of them coming to our branches, it’s much easier if we could go to them. Others they can just log in and do you know, for the ones who have accessibility. But for us in a nutshell, accessibility means that we are offering financial inclusion, financial services without discrimination. Another thing that I would want to mention is that we are relationship bank.

So for us, we are very humbled and honored that our relationship managers and our relationship officers are not stuck in the office. Of course, we know that COVID has disrupted a lot of movement. But we encourage our staff to actually go to the client.

We do have Express outlets where somebody can be served within a few minutes, and it’s actually closer because they are right on the road.

Lizzie: That sounds amazing. So, in terms of the Express outlets, and you said, you visit customers, are these high end customers? Or how do you categorize the customers you visit? Can anyone request a visit to their place of business?

Margaret: Okay, good question, Lizzie. We have four different sectors. So we as a bank, we have divided the customer segment into three. So we do have the corporate, and then we have SME, Small Medium Enterprise. And then we have the retail customer, you know, Liz and I and Juliet and Maggie and Abdia, all of us are called retail or consumer banking, which I fall under.

So, when it comes to corporate, you’ll understand that most corporates you’ll visit them at their offices, most of the time, or they’ll come to us. And remember, at the end of the day, we do have to respect customers’ preference, some customers don’t like to be visited at home, Within SME the three sectors have told you, we do have broken it to now Centres of Excellence. So, my department is a Centre of Excellence and let me explain what I mean. So, a Centre of Excellence for example, is a centre in the head office that actually takes a deeper dive into the customer needs in that segment.

We do believe that, you know women need to be heard more women need to be economically empowered. And of course it’s starts with banking, accessibility to credit facilities, which I think we’ll be talking about later on.

I’ll tell you for sure, from my banking experience here in Kenya and abroad. I’ll tell you, for sure, Kenya, we are far from inclusion. If I can use that word for politely; Kenya, we are still far from inclusion as a country. And I think Juliet, you can agree.

Juliet: So my experience with one particular bank, which I won’t mention, they said because I’m visually impaired, I’m like a liability.

Margaret: Oh no.

Juliet: It’s a fact. So once I had gotten an order, and then after they (the bankers) gave me the requirements, they’re like, by the way you are partially blind, right? Yes. So they were like utaweza kulipa (will you be able to pay)?

And then later on, to cut the long story short, I didn’t get the credit I needed for that order. So that is the reality in most banks in Kenyan, they believe that persons, women living with disability are a liability. They don’t think that once we get a loan that will be able to repay it.

Margaret: Oh my god. That is so sad, Juliet. I don’t even know the word. If I could call it, I don’t know how they call it in Kenya, its discrimination. It’s straight up discrimination. And I think in other countries, you could even sue for it. I’m not trying to ask you to sue, but it’s actually a human rights denied, you know?

Lizzie: For us, we wanted to have this initial conversation and see how we can work together to increase access. I know, you know, you talk about the different ways that SBM has ensured accessibility. But in terms of disability inclusion, there might be some tweaking that needs to happen, so that you’re catering fully to this population.

So really, this was just to an introductory conversation for you as a representative of SBM, to hear from experiences of women in business, like Juliet, who has experience with accessing AGPO, for example, so I’m sure Juliet can also talk about her specific challenges around AGPO and I’m sure she would appreciate knowing that there are some key players who pay who engage with their clients in a more professional manner. I have heard of stories of delayed payments, which affects your credit at the bank and you know, the loan that you take.

But also I like the fact that, Margaret, you mentioned you have a small community of Deaf clients and your banking relationship is very personalized. For me, and I think for anyone, when they walk into the bank, as much as the bank has thousands of customers, my relationship with my bank is on an individual basis. So that personalized service is super important. So I’m curious whether your technology takes that into consideration. So for example, if you’re visually impaired, Juliet, what are your needs when it comes to accessing mobile apps?

Juliet: For me, I consider myself a bit fortunate because I have a smartphone. And so that means when once the screen reading software is enabled it can work with all apps, but for someone with totally low vision would want the font either to be bigger, which I think at times you can do it from your phone. So personally, I think with my phone I am able to access most of the apps, and they like the fact that Margaret spoke about the apps and how your bank is moving towards digital accessibility. In all the banks I am in I have to physically visit the bank.

Margaret: They’re not serious, no.

Juliet: I have low vision, not blind, that means I can see to some extent. So when I walk in the bank with my white cane they already have a perception about me; walk into the same bank without the white cane again, the services they’ll give me are again different. I can’t speak on everyone behalf, but it’s a fact that is how the situation is on the ground. So whatever services they peg it on the fact that I have a disability.

Three weeks we walked into a bank, we were opening an account for a disabled group.

So I told the person at the service desk that I’m visually impaired so I’m not able to write and I needed him to help me. And my friend, the one I was with has, he doesn’t have hands.

So, the first lady we saw, sent us to the next person because she was busy. And then the next person said, “hamuwezi tutafuta mtu akusaidie, I’m a bit busy” (can’t you get someone else to assist you).

Margaret: What?

Juliet: Yes, so I stepped back, I went to someone else and requested to speak to the manager. So by the time I am requesting, these guys have already seen me. So I don’t know whether it was true or not, we were told that the manager is not in but we can see I don’t know someone called the Business Development Manager. And as I was approaching his office, the person who led me there, I could see him whispering into his ear, then walked away.

Margaret: You are joking!?

Juliet: Yes, so of course, I really vented and they told them, I need a form to close my company accounts. And that’s when everybody started shaking, and everyone was saying sorry. I feel like when you have a disability, you have to work twice as hard as quote unquote the normal people you know. I’m bringing business, I’m opening an account, my money is not disabled.

Margaret: Exactly. Exactly.

Juliet: And why they saw my account balance they started apologizing and saying that they can open an account, of course, I didn’t even open we didn’t even open the accounts.

Margaret: Why do you have to look at the balance? Do you have to look at my balance and say that I’m Chris Kirubi, to serve me well?

Juliet: I think your bank may be a bit different. This other bank, sorry to say, I’ll give an example, I got another order, I went for credit. Of course, they gave me a lot of hurdles saying your account has not been active and so on. And then they said I have vision problems, will you be able to pay? So of course, we didn’t get loan. Later on we got an individual who financed me to do the business. When we were paid that’s when the bank said the next time they’ll loan me. Honestly? Does my account have to reflect money for you to see my potential?

Margaret: Exactly, and you are the same person, before and now.

Juliet: Yes, I’m the same person. In fact he went to the extent of telling me he could personally finance me, we agree on the interest rate if the banks are still not lending to me. And that is after him seeing the payments coming through.

Now, Margaret, sadly, this is the situation. And for me, I’m what I’m here to talk about. If you listen to stories out there. A lot of people don’t even go to banks for credit, they have individuals who come to you, they give you 100,000 we agree I pay back at 25%. It’s like we have lost hope in banks.

Margaret: I have become like a lobbyist, an advocate. So what happens is that you see, for me, I also have to train branches on inclusion together with our HR we are lobbying for inclusion.

In some places where we are even renting, you’ll find that a branch might not be in a proper location for, you know, for inclusion in terms of accessibility. But the more we lobby, even our administrator, our procurement officers are saying, wow, so the next time when we opening a branch, we have to do this checklist that Maggie is fighting about, you know, if you understand.

I think the more we talk about this thing in terms of tomorrow I can be disabled. Remember, yeah, human beings who have lost their eyesight as adults. I don’t know if you’ve come across those.

Lizzie: Okay, thank you. Thank you ladies.

Lizzie: You’re listening to PAZA Episode 7: Conversations with women and girls with disabilities globally. Today we’re exploring financial inclusion for women with disabilities; a key to economic empowerment and ending economic injustices among women with disabilities.

(MUSIC) Interlude

Partnership Appreciation – UNFPA, Global Fund for Women and ForumCiv

According to World Health Organization (WHO), 15% of the global population are persons with disabilities; studies also show that 20% of the female population are women with disabilities. In Kenya, 65 – 70% of persons with disabilities live in rural areas with little to no access to technology and financial inclusion. 

This Ability Trust is grateful for the support provided by UNFPA, Global Fund for Women and ForumCiv in our work on the use of technology to increase access to economic empowerment among women with disabilities across 8 counties.

This message is approved by This Ability Trust.

(END OF MUSIC)  End of Interlude

Lizzie: And welcome back, you’re listening to PAZA: Conversations with women and girls with disabilities globally. This is Episode 7, we are exploring financial inclusion for women with disabilities, a key to economic empowerment and ending economic injustices among women with disabilities.

So welcome back guys.  In an effort to ensure that we also capturing experiences from different parts of Kenya, we have a recording from Kakamega County, and we will now listen to Susan Erinah.

Recording – Susan Erinah from Kakamega County

And it has been a challenge for me accessing capital, because sometimes I get the Local Purchase Order (LPO), I don’t know where to get the money or do the business itself. Even the payments are delayed, mostly I supply to health facilities and the government paying me becomes a challenge.

I do not stay in Kakamega town, I stay in a sub-county called Matungu, where is no bank. I have to go to Mumias. Yes Mumias we have 3 banks but I got discouraged with the Women Enterprises Fund so I thought the bank will take me through the tedious process again.

That time I am desperate, I want the money, I want to do the supplies and even the procurement officer is on your neck, they want the supplies. I got discouraged, I’ve never bothered visiting a bank and asking all those details again.

I cannot go to the mama mboga (local grocery) and tell her to just give me the tomatoes I’ll pay you after one year. Nobody will accept that. You have to have the cash. Now because you will get the money from someone you expecting the government to pay you almost immediately but they delay payment for one year. By the time I’m getting paid I am worked up. You have nothing.

As a woman with a disability even just accessing the bank means I have to go to someone to help me move around; that is another expense. And somebody somewhere in the office just decides to pay me after one year. It’s quite a pity. I’ve heard people say how the banks frustrate people now I got scared.

End of Recording

Lizzie: So to follow up on that, I think since the experience is more or less similar with Juliet’s experience. It would be nice to hear from you, Margaret, what it takes to get a loan from the bank? What would be the requirements? You know, what is the bare minimum an individual should have? And how then can we apply that to the reality of women with disabilities?

Margaret: Short, because requirements can be very long, depending on, different sectors have different needs. So perhaps, I’ll just summarize, you know, just to make sure that we addressed Susan’s question. The first thing I want to say is that for us there, the advantage we have, and I’m not trying to market the bank, it’s a fact, for example, you will find somebody in agribusiness, the requirements will be different from somebody who is supplying. Or even a business that is registered, as opposed to somebody who is operating a business under their personal name. So the requirements are very different. We don’t try to make it so complicated, you know, like cast on stone. We are very flexible and we like considering the relationship aspects.

We like considering hearing customer’s scenario, as opposed to just you know, copy and paste all to be the same, no. When a customer calls we usually establish, if they have a relationship with us. And if they don’t, for lending purposes, we usually prefer that I’m sure most of the customers would have gone through a relationship like that.

Lizzie: When you say relationships, do you mean they have a bank account?

Margaret: Yeah, yeah, because we are mandated. I think you know when terrorism started happening, and people are just moving money from one place to another, that was one of the key requirements, all banks have to even I believe saccos.

But for us, what we do is, for example, let me use an example of Abdia.  So if Abdia walks in the bank, and she needs lending, you know, so we usually just say, give us the previous banking records you do have. And this brings to my point, you know, for any customer, anybody out there hearing me, it’s very important that you keep records.  

Globally a research was done and one of the problems, one of the reasons that was found why most people do not have access to banking, have limited access to banking lending is because of we don’t keep records very well.

But globally, even here in Kenya more so, let me give you an example, if I am running a business, I mean, I have a young child, and my nanny would call some days as they don’t have cooking gas, gas imeisha (gas is finished). So usually, you’ll find that the money I’ve sold in my shop, for example, I’m sending it to her. So really you’ll find that sometimes we are not structured in our record keeping. So it’s very important guys, I cannot overemphasize record keeping is actually one of the things. And I’ll tell you the advantage of working with a bank, and I’m not necessarily talking about SBM bank, I’m not here to market, I’m here to add value. The advantage of working with banks is that you get the cheapest, cheapest lending.

Now, even if you’re receiving that money, let it go through your bank account, because guess what your MPesa statements can also be a record, that would add value to your lending.

Another thing that I want to point out is one is unpaid cheques, where you’ve probably written a check to somebody and it bounced. And this one is like what we call a “red flag”, and it’s global. When you pay somebody make sure that there’s enough money in your account as opposed to that check bouncing. It actually shows negatively on your credit reports, I don’t know Lizzie, if we can have a session where we talk about credit reporting and how to even improve on your bankability.

Lizzie: Can I just jump in before I forget this thought, you mentioned three things that I picked up on in terms of the way forward. You talked about credit reporting, you talked about record keeping, and you talked about general bankability. For me, that’s interesting, because This Ability has developed an eLearning platform, where we are we are providing necessary skills in different areas.

Margaret: Okay

Lizzie: One of the things that we wanted to discuss with SBM, or rather with you as a representative of SBM, is the idea to develop, to partner to develop a course on financial inclusion that we would now offer to the different groups. We work in eight counties, and we have a network of about 500 women with disabilities across these eight counties. So if these are the requirements that banks need for women with disabilities, how can we begin to build those skills among the women with disabilities?

So we think that, you know, our eLearning platforms, and we piloted this in three counties right now in this period of COVID, and uptake has been really good. It would be useful if we could continue this conversation and zone in on those areas that you’re talking about that are necessary for a bank and its consideration to financial inclusion for a woman in a disability. So those area, what does credit reporting mean, from a practical standpoint, what does it take to keep records that the bank would deem feasible, what is bankability in general? So for me, it would be useful, and it was for it to do practical, tailored solution that we offer women with disabilities. Our platform is fully accessible to the different disability types. And right now, we also trying to simplify the language so that we can also include communities of individuals with intellectual disabilities.

And I would just like for us to begin thinking of how else what other ideas we have for the approach around financial inclusion and its practicality. So how can we ensure that this is the norm, and we avoid experiences like Susan’s and Juliet’s, and we ensure economic empowerment is the reality for women with disabilities. So can we maybe spend like five to ten minutes discussing the way forward? And how the banking sector can enhance financial inclusion? And from you Juliet, what would you like to see?

Juliet: Okay, maybe before Margaret answers your question, I have a comment and it’s for banks generally. So when banks are advertising themselves, they have all these goodies, I can call them. Once you’re inside, the tables change.

Margaret: Yeah.

Juliet: So my question to Margaret, and I hope it’s not selfish question. Me being in business means that, at times, my account will not be active every other month. Fine, at least now you’ve educated me, and now I probably know a little bit on how to go about that, but there’s analysis that the bank does. It doesn’t mean every month I’ll have an order and when I’m coming in for credit that’s one of the things you guys look at.

Do you have a mechanism, or is it still the same? That if my account, the analysis comes in that the last six months have not been active, that I now don’t qualify for credit, because this is one of the reasons that we are driven to these loan sharks. You know?

Margaret: Yeah.

Juliet: And funny thing is, they give us money and then the money kicks in the account, then you as the bank sees that you’re able to pay. But before this analysis I am not able to access credit.

Margaret: True, true, true, very good question Juliet and it is so true and I think I can agree with you thoroughly because I also work with all banks and I am in that sector, so it is so true.  

You see for banks to change the regulations, we have to go to Central Bank of Kenya (CBK), which is another window that I don’t even want to discuss here. But they’re our regulator, because they have to make sure that when you, Juliet, bring your million today, they have to make sure that there’s liquidity. I think you’ve heard about it, we have to make sure that or when Lizzie comes to get her money, even though Juliet brought a million, it’s ready and there are not many excuses, you know.

But what we’re doing as a bank, diversity and inclusion, we started the work early this year before Covid, thorough work that I mentioned before; we are working with International Labor Organization, we are even internally working with our HR and our credit department. Remember, I’m not in credit, I am in business, but we are the ones who educate them.

So what we are trying to do right now is, once we have this checklist from different organizations, for example, that women-led organizations, youth-led organizations, now you come in, disability, we have any will be able to build a very strong case that can be presented even to CBK Governor to say no, here, we have to take care of our people living with disability.

Lizzie: And I just wanted to mention, as we are working on policy changes and we’re looking at the bigger picture, you mentioned something around training, you as the Centre of Excellence, you keep training other departments. And you mentioned procurement departments and credit departments, which are the ones that also have a direct engagement or interaction with your clients or affect the extent to which clients will access your services.

I wanted to address the issue of unconscious bias. Sometimes we focus on physical infrastructure, we focus on ensuring there are ramps, there’s railing and all these things. But we forget that as people, we interact with disability in a very negative way. And it’s important when we are addressing diversity and inclusion to also train people to help them unlearn some of the concepts they’ve picked up on since childhood. Because it starts from the home front, how people interact with disability. So it’s for us who are in the know, to provide learning experiences, learning opportunities for people to unlearn some of the biases that they hold dear. It’s very unconscious, people don’t do it on purpose. No one, you know, decides I will wake up today and I will discriminate on individuals with disabilities.

Margaret: True.

Lizzie: But we have learned to associate disability with curses, with poverty or negativity. Those are things we hold dear, you know, as individuals and they show up in invisibility of the rights of people with disabilities, in our policies, it shows up in how we program, it shows up in our service delivery. So it’s important when we are doing our trainings to incorporate a component of helping people unlearn.

Margaret: I love what you’ve said because I could not agree with you more. What you’ve said is so true. Sometimes it’s unconscious bias. And I feel that for us to bring this to the next level, it would be nice if we can have a session with you, to know what are some of the unconscious biases so that slowly, but surely, we start breaking some of this unconscious bias, because it’s a killer, I’ll tell you, it’s the biggest challenge we have.

Because like you said,  some of these disabilities, people associate them, for lack of a better understanding or lack of knowledge,  like the Bible saying, you know, for lack of understanding people associated it with something you didn’t do, something your mother didn’t do, something your father, you know, your family; and it’s actually taken as a negative.

Juliet: No, this was a wonderful session, Margaret, you brought in the human aspect of a bank. And it sounds funny, but for the first time I felt like I’m talking to a human being. And you actually sold me on SBM, maybe. Keep up the good job. It feels good to know that people think about us also. And Lizzie and This Ability, you’re a wonderful team. Thank you again for this opportunity.

Lizzie: Thank you for making time to join us. We appreciate the partnership, both of you.

Juliet: Wonderful.

Margaret: Thank you. If anyone of you wants my contact feel free; we can chat later. Juliet, it’s not about you banking with us. It’s about us as human beings and even linking you with opportunities. So that you are a case study of successful people living with disability.

Juliet: Exactly, exactly. And like Lizzie said, a lot of people also associate disability with poverty. That is why they have that mentality of “will you really pay,” and that’s not the story, it’s not always the same. Thank you very much, Margaret and God bless you. God bless you all.

Margaret: Ahsante.

Lizzie: Okay, have a nice day. Ladies. Thank you.

Margaret: Thank you, thank you.

Lizzie: Bye

(MUSIC) Outro

Lizzie: I am Lizzie Kiama and you’ve been listening to PAZA! Conversations with women and girls with disabilities globally. You can also follow This-Ability of Twitter an Instagram @this_ability_ ke and on Facebook

Join me next month for another stimulating conversation. In the meantime, follow us on Twitter @pazapodcast to continue the conversation on the experiences of women and girls with disabilities. Until next time, stay safe.


Paza – Episode 6

PAZA Podcast E06

Exploring Digital Literacy as an essential tool for empowering women and girls with disabilities.

Recorded Tuesday August 25, 2020

Full Audio-Text Transcription

(MUSIC) Intro

Click above for Paza Episode 6

Hi, I am Lizzie Kiama, welcome to PAZA! Conversations with women with disabilities globally. PAZA! a Swahili word meaning to amplify is an initiative by This-Ability Trust. PAZA! seeks documenting and creating visibility for the experiences of women and girls with disabilities

Join our conversation on Twitter @pazapodcast, you can also follow This-Ability of Twitter an Instagram @this_ability_ ke and on Facebook

Now, let’s get into today’s topic of discussion.

Lizzie: What do you girls feel about digitaldada?

Martha: I think it’s a really good campaign to be able to show young women who are entering into the digital space and learning all these new skills, and they’re able to use them to better their lives. And they’re able to use them to do things that they didn’t think they were able to do. And for others to see that this is someone who did not have this skill but when they were given us to be able to do something really big with their lives.

Lizzie: Okay, we will go round.

Lizzie: Jacinta, are you proud to be a digital dada?

Jacinta: Yes, of course.

Lizzie: Veronica, are you proud to be a digital dada?

Veronica: Yes.


Lizzie: Martha, are you proud to be a digital dada?

Martha: Yes, I am proud to be a digital dada.

Lizzie: Jacinta, do you want to just introduce yourself, tell us who you are, your name?

Jacinta: I am Jacinta Odima, I am woman living with a disability. I am passionate about empowering women and girls specifically women with disability and # I advocate inclusion.

Veronica: Okay, I am Veronica Akinyi. I am a proud person living with a disability. And I am passionate about helping the elderly so much especially those who have gone through an accident, I actually have passion for them because I’ve gone through that I know how it’s like.

And yeah, I am a proud digital dada.

Maryanne: I am Maryanne, I am a mentor, I also advocate for persons with a disability but sana sana youth and because youth are the left behind kwa mambo ya empowerment, skills na pia job opportunities kama zile job za mtaani. Yes, and I’m very proud the way I am, nimejikubali vile mimi tu niko and I can say many changes have come into my life na nina tamani kama other people like me to experience those things because they are good. Yes, #digitaldada


Martha: My name is Martha Nzomo, I have albinism and I am proud to have albinism. I have accepted my condition and I love skin that I am in. I am also very passionate about advocacy. Of late I’ve been doing a lot of advocacy and education on albinism. And at the moment, in that organization I’m interning with we are doing a lot in the digital space. And it’s sort of coincides with what I am learning in the digital marketing classes. And I’m really enjoying being able to learn and then come in apply in the work place. And yes, I’m a proud #digitaldada.


Lizzie: So this particular episode of the podcast is focusing on digital literacy. Thank you for coming. And thank you for making time to speak with us. And I just wanted to for us to look at probably our backgrounds before we started this program, in terms of how we accessed technology, if we accessed it. How we use social media what challenges we have? First of all on social media, which platforms are we on? Why we are on this particular platform as opposed to the other platform, are there issues around accessibility for women with disabilities, given different disability types? How accessible is the internet in your from your homes because now with Corona, everyone is doing everything from home so it’s not like you can see you can go into the CBD or you know, or go to a place where there is better internet. So in from home from the convenience of your homes, because also our eLearning platform, one of the selling points is that you can access the E learning platform from the comfort of your home. So how realistic is it you know? And what challenges are there also in our education system? Does it equip us as young women with disabilities to ensure that we are successful? When we finish school, and now we want to look for jobs, you know, what skills do employers look for? And do this, the schools that we went to, are they do they offer those skills? When you go to when you want to find work in you, you’re looking for work in the private sector? What skills are necessary to thrive in that environment versus maybe working in the community or working with a nonprofit? You know, is there a difference in skills? And are we do we feel like we are equipped? And then also going to some of your recommendations, what do we think can be done to increase uptake of technology amongst young people with disabilities and what can government do? So in a nutshell, we just want to have conversations around that.

Yeah. Does that feel okay? And if there’s something you feel that we should be discussing, please as always feel free to let me know and add and I’m sure all of you are happy to do that, sawa sawa?

So how actively do you use technology? And in no order please just feel free.

Jacinta: All the time.

Lizzie: All the time, okay.

Veronica: Any time I’m free.

Lizzie: Okay. Yes. How do you use it?

Veronica: I use it mostly for…my like LinkedIn I use for jobs, Facebook I use it for selling.

Lizzie: What do you sell on Facebook?

Veronica: I work for a car financing company, so I look for clients there.

Lizzie: Okay, okay.

Jacinta: On my end I use my mobile phone mostly for learning and then WhatsApp for chatting. I also use the social media, Facebook mostly for advocacy and also if I want to know what is trending.

Like, recently I’ve been focusing more on amputees. And then how do you how do you cope after you’ve lost something that you had? And how to come out from that? Yeah. And also how to the process for this the beginning stages of acquiring a prosthesis to the final stage, I like that part, so I like sharing mostly. And then also I use Twitter and I use LinkedIn for looking for a job, but that site you look for professional and mature people.


Lizzie: So, ok. So where are the immature ones? 


Lizzie: And TikTok?

Jacinta: I don’t like TikTok.

Martha: I take offence in that.


Jacinta: Really? I am sorry for that. So those are the areas in social media I am mostly use.

Lizzie: Why do you take offence?

Martha: Because I love TikTok. It is so fun. Honestly you will go into TikTok and it will be morning and you will not regret not having slept because you had so much fun on TikTok.

Lizzie: Okay, what happens on TikTok?

Martha: They are videos, mostly videos, people dancing or funny cats and dogs. And you’ll just be laughing the whole time. And I’ve actually been able to get in touch with many people with albinism through TikTok who live around the world. Yes, because you can use hashtags. So if you just search #albinism I will find all these videos of different people with albinism explaining their condition or just making funny videos that if you had albinism you would understand but if you don’t you’ll be like “oh my gosh, that is so mean”.


Yes, it is pretty fun. Yes.

Lizzie: Maryanne, do you want to TikTok? Are you on TikTok?

Maryanne: Kidogo tu, I am still…


Lizzie: So, which platforms are you in?

Maryanne: I am on Facebook, but niliingia juzi juzi tu, I am still a new member. But still imesaidia sana because I got a job at Kenya Charity Sweepstake and lot of links…so I share links on Instagram, Facebook so people can see what they are doing the community.

Lizzie: And how easy is it for you guys to use technology, internet, social media, mobile phones?

Veronica: Bundles, aaaii?


Lizzie: So affordability is an issue?

Veronica: It’s so hard but we are trying.


Veronica: Safaricom!

Lizzie: So, it is expensive?

Veronica & Maryanne: So expensive.

Veronica: Kwanza saa hii, everyone is at home so the network is extremely slow. 

Lizzie: So not only it is expensive but also the quality is also not the best.

Okay, so what do you do?

Veronica: You just survive with what is available. Everything is so slow, you are supposed to finish your work within one hour, but can take another one hour to finish it. Your boss will be like…? You have to explain why.

Lizzie: Yeah, well, and for the streaming of the video.

Martha: For me, I see I’m very privileged. I live with my sister and she works a lot from home, so she just pays the WiFi. So I’m able to use that WiFi.  I am also able to work from home most of the time. And so for us, we just thought that it would be easier if we get WiFi because it is more reliable, we will both be able to finish our work, meet our deadlines on time. Yes, it is costly, but when we consider purchasing bundles, if you look at the costs per month of what you use on WiFi versus what you will use personally when you buy bundles on your phone, it is much more sort of cheaper. Yes, in the long run.

Lizzie: Both of you said, Veronika and Martha, you said you work from home and you use the internet to work from home. When did you start working from home?

Veronica: Since early April.

Lizzie: So based on Corona?

Veronica: Yeah.

Lizzie: And were you able to go through a training in order to comfortably do the work?

Veronica: No. As per the trainings have received previously, including that at This-Ability, I had much knowledge on that.

Lizzie: So this training happened after high school or also in school?

Veronica: After.

Lizzie: So do you think our education system is equipped to handle the needs of today’s employers?

Veronica: No

Maryanne: No

Jacinta: Mh-Mh.

Martha: No.

Lizzie: Would you say today’s employers are requiring people to be more technologically knowledgeable?

Veronica: For example of me, I am doing sales and marketing right now but in campus I studied education.  So you see…as long as you’re passionate about what you’re doing, go for it.

Lizzie:  And so that passion, is passion enough or do you have to take it upon yourself to learn these skills?

Veronica: Passion. But you see these education system, they want you when, I was a Jab student, so when you’re a jab student there is a class they need you to take

Lizzie: What is Jab?

Veronica: Jab? Jab means you are a government sponsored student.  So, when you are a Jab student, they need you to get a certain cluster points ndio ufanye ile course unataka. So my cluster points could not reach my passionate profession.

Lizzie: Which was what?

Veronica: Business. Anything business. So I had to take education. So hiyo karatasi nime iweka tu.


Lizzie: So you finished campus and you started doing trainings on business and sales, okay. And you, Martha?

Martha: So for me, I was working from home even before Corona. I studied finance and most of the things I do in the organization I’m interning for are to do with finance and we usually use a software, and the software is, of course, on the computer. So if I just have a laptop with me and I have either it’s the receipts that I need to input their numbers or any to create requisitions I can do all that on the computer.

And no, I didn’t actually save this training from school, which was actually disappointing because I did a whole degree program and nothing that I am doing right now was ever spoken about in school, at all, I had to learn all this on the job.

Lizzie: Okay, Maryanne, Jacinta, what are your feelings about the education system and how it ensures young people are ready for the workplace.

Jacinta: I think the education system in Kenya, for now, is not helping because what the employer is looking for is more than what you’ve learned. For example, if let’s say I have done administration, the employer will not only look at the administration itself, because like you see right now we have the new technology. So we have to be good in ICT, to know more about ICT. And also most of the jobs that are coming up right now they’re not focusing on the books. They’re focusing on the talents and the skills that you have.

Lizzie: So what do you know is happening in your different communities to ensure that either young people with disabilities, for example, you say you’re interning, is there anything you guys are specifically doing? Or do you know of other organizations that are specifically apart from disability and our hashtag?


Because we also have to point out the different resources that are out there for other people with disabilities, do you know of any?

Jacinta: In terms of entrepreneurship?

Lizzie: In terms of entrepreneurship, in terms of increasing technology, digital skill, in terms of advocacy, because technology can be applied across board.

Martha: So as I work with the consumer called Positive Exposure Kenya, we do advocacy and education for people with albinism. In the past, we will have physical meetings to teach this young parents about what albinism is, how to raise a child and the needs that they have, but because of Corona, we cannot have this public gatherings. And so what we decided to do, we had been thinking about it in the past, but decided to speed up the process. And we were thinking of creating an app, which is called Albinism and I, where parents or young people with albinism or anyone in the community can just log in and get all this information from an app on your phone. So we do not have to physically go to Machakos or Nyeri. If you can download the application, you just get all the information there from the application. And something else that we’ll be doing with the application is linking people with albinism in specific and service providers – so these are people who provide prescription glasses, or people who provide them with dermalogical care because of the sun and people who can be able to link them with sunscreen, and protective clothing because these are the main needs that people with albinism have. So yeah, that’s one of the things we’ve been doing.

And we’ve also been doing skills training. So when Corona first came we taught a few women how to make masks. And this was something that they come to the office for, we have the sewing machines in the office. So we taught them and now they’re able to just come in the office make the masks, either for their own families or if they are planning to sell them, and then they can be able to earn money. So they don’t come in asking for money because we don’t have food. And are they able to earn on their own? We also taught them how to meet ponchos and scarves, so they can be able to sell.

Lizzie: Where do they sell?

Martha: In their communities, but now through the application, we also have an eShop. So that was also something that we added on the application. Because nowadays people are buying everything online, so they can advertise that and just sell on the app.

(MUSIC) Interlude

Lizzie: You are listening to PAZA Episode 6: Conversations with women and girls with disabilities globally. Today, we are exploring digital literacy as an essential tool for economic empowerment. We are taking a short break to highlight our partners who support our work on digital literacy. Remember to follow our #digitaldada campaign on Twitter and Facebook.

Partnership Appreciation – UNFPA and Global Fund for Women

Martha: Hi, my name is Martin Nzomo and I am a digital dada. Lack of data on women and girls with disabilities perpetuates their invisibility and lack of representation in Kenya. This-Ability Trust thanks her partners UNFPA and Global Fund for Women for their support on our work to increase data collection among women and girls with disabilities using technology.

This message is approved by This-Ability Trust.

(END OF MUSIC)  End of Interlude

Lizzie: Welcome back. You’re listening to PAZA: Conversations with women and girls with disabilities globally. This is Episode 6: Exploring digital literacy as an essential tool for economic empowerment.

So for you, Veronica, you mentioned that you did a degree in education. So your passion was in business and sales, and you did not get any skills from school, any digital skills, they did not train you or equip you. And you had to-

Veronica: Look for it myself.

Lizzie: You had to find these skills for yourself. And the same for you, Martha. You did a degree in finance, but unfortunately, your words you are disappointed.

Martha; Yes. Yes, I was.

Lizzie: That your school was not able also to provide you with the necessary skills to allow you to thrive.

Martha: Yes, the skills that were needed in the job market.

Lizzie: So what do we think these skills are? What do you think employers are looking for?

Veronica: We are in the 21st century and that means, ukitoka campus you need to have anything in ICT. Basically, you must be well equipped. Even if you are a teacher like me, you must be way up. So if they can introduce that in training colleges or universities, employability will be just fine.

Lizzie: What about you?

Martha: Well, for me, I talk about the finance, financial world, basically. So when you’re in school, you’re taught how to do things physically, like balancing a cheque book, you’re taught how to do it in writing, but when you go out there and you’re looking for a job, that are various softwares that organizations use, they don’t do this manually. And they ask you do you know how to use them? Or do you know to use QuickBooks? And they are like, you have a degree how do you now not know how to use them? Do you know SPSS? And you have no idea and what that stands for. And so now you have to start from scratch, they have to teach you, or you have to go online and search for it yourself and have to learn as you’re practicing. So those are the type of things that they need to teach not just theory, but the practical in the digital space, because many things are now digitalized. Yeah, you don’t keep files physically. You do it in a digital technological way to transfer these files and these are things that we are not taught in school.

Lizzie: So if you’re not taught in school and school is where young people go to get this knowledge so that they are successful after high school, whether it is in self-employment or you know, employment, where else can people go? Do you know, where young people can go to get this information, the skills?

Martha: I think of late there has been a rise in online learning. Many people are going to Google to look for places where they can learn these skills online. For example, this organization called Allison, they offer courses in basically everything and they are free of charge. Unfortunately, you can’t verify whether the information is credible. That is the one thing that is unfortunate, because yes, you will learn it, but you’re not sure that you’re learning it as per what the organization is going to be asking or requiring from you. But I think that’s one of the places where people go to look for skills, online learning.

Lizzie: So if you’re in the rural areas ama mashinani because young people are not only urban areas they also mashinani, where do they go?

Veronica: Do they even know if they if that platform exists? Let’s start from there.


Lizzie: Na mukienda ushago, is there internet?

Maryanne: It’s so hard.

Jacinta: No. Besides the internet, even the electricity. Yeah, and when you say like to use your phone, you won’t use it because sometimes you have to charge your phone very far…in the market.


Jacinta: So I think online, it doesn’t work. And then also I think the most thing that employers are looking for is the soft skills. The soft skills we don’t get them in school. Nowadays they look at, yes you have the knowledge, but how you present yourself is the one that matters. You have like, when you are going for an interview, do you have that confidence that you’re able to do that work? Let’s say, for example, you’ve done education, and you’ve done other trainings like in digital marketing, the presentation that we present ourselves to the employer is the one that matters; it will it either help you get that job or you will not get that job. So sometimes we might have this skills but mostly what they’re looking for these days is the soft skills. Are you able to present yourself? And are you able to do your work well? This is lacking. And this you don’t get them in some schools?

Lizzie: So is this the role of school or is it something that should happen after school?

Jacinta: Parenting, that differs for each and every person, how to raise their children, but with the society that we are in and the technology, how you discipline or how you teach them to be really matters because mostly in the world, they are focusing on the talent, what this child they can do better, and what they cannot do better. And I think in Africa, we are yet to understand. Because you find, as parents, sometimes we force our children to do what they know they are not good at. You find we’re told we’re supposed to become a doctor. And yet you want to become an engineer? And maybe you are good in music. And to them that one is not a job. So the way we raise them matters or not?

Lizzie: So we do have a role to play. So back to this question of mashinani…so Veronica, you said if the youth even know these platform exists? Facebook, TikTok…


Veronica: That one they know.

Jacinta: Most of them have smart phones.

Lizzie: How can we ensure that more young people especially those with disabilities, in in the rural areas have access to internet, when we are saying that even Safaricom is limited, even electricity is not available everywhere. What can be done?

Martha: We can take such forums to them, because we cannot give it to them digitally.

Lizzie: Okay. So, conversations should not only be in Nairobi but should be taken down to mashinani.

And since we are talking about technology that like we have decided it is a good thing. We’ve decided technology is a good thing. But what are some of the disadvantages?

Veronica: Disadvantages? Okay, like my case, I use it to a specifically for selling. So you see like I’ve advertised the car and got a client but the client is like doubting if I’m working for that company. At the same time maybe I might be lying that I work there and I might scam the person. So that’s disadvantage.

Lizzie: Yeah, there are no ways to verify information. Yes. Okay. And actually a lot of propaganda and untruths are spread on social media.

Veronica: And if you find a naïve person, you find that a person can be scammed today, tomorrow, you are just being scammed.

Lizzie: And what are the advantages of technology?

Martha: Having albinism means that I am very short sighted. So sometimes reading a book can be pretty hard. But I have like 1000 eBooks. And I can put it whatever font size I want. And it just it helps me because I love reading a lot. And reading a physical book can be very straining but if I have it on the phone, they’re all these apps that can produce light, blue light filters, and dissolve these night effects that can just reduce that light and I can just read for hours. So for me it’s really convenient.

Lizzie: Now that is an accessibility, the benefits of technology in terms of accessibility. But I think also, for people who have hearing impairments would therefore have the option for captions in videos, it’s a life changing. And also the text to speech for the blind. I think that also offers a unique advantage.

Maryanne: You can say, it’s trying to accommodate everyone.

Lizzie: That’s true. That’s true. Yes. So, you know, we’ve talked about how technology can offer accommodation to different disability types. So do you think, because for a long time children with disabilities have not had equal access to education, so do you think incorporating technology in our education system would be beneficial?

Maryanne: Yeah. And so if there’s a parent who wants to take their child to school, they don’t need to struggle and go to far places. So ita kuwa much easier in every county there’s a high school, primary and high school where anyone with a disability can access that school. Yes.

(MUSIC) Interlude

Lizzie: You are listening to PAZA Episode 6: Conversations with women and girls with disabilities globally. Today we are exploring digital literacy as an essential tool for economic empowerment. We are taking a short break to highlight our partners who support our work on digital literacy. Remember to follow our #digitaldada campaign on Twitter and Facebook.

Partnership Appreciation – VOICE & ForumCiv

Jacinta: Hi, my name is Jacinto Odima. I’m a digital that less than 1% of women with disability in Kenya have gainful employment or stable income due to lack of competitive skills and information in today’s digital economy. This-Ability Trust thank her partners VOICE and ForumCiv for their support on increasing digital literacy among women with disability.

This message is approved by This-Ability Trust.

(END OF MUSIC)  End of Interlude

Lizzie: Welcome back. You’re listening to PAZA: Conversations with women and girls with disabilities globally. This is Episode 6: Exploring digital literacy as an essential tool for economic empowerment.

Lizzie: So we’ve talked about a number of things, you know, the realities of accessing technology, the affordability, the accessibility, what skill sets are required when you come out of school, what skills the school system needs to incorporate the rule of parenting? What other recommendations do we have, particularly to our government? What do you think government and also private sector because they’re very few companies that are working in this space, we can think of maybe even in on one hand Safaricom, Airtel, that are working to provide access to internet and mobile technology. And also, you mentioned something about whether we have policies that speak into online protection. So, I think it would be useful to also enter that policy advocacy space from a disability standpoint, because this is a service that can change the lives of young people with disabilities. So what would your recommendations going forward?

Maryanne: I think also the community pia and also those elected leaders, pia wanafa kuwa wana strengthen. They are being elected to do something, so they should also be able to strengthen anything that is happening to the community. People ndio grassroots and leaders ndio…ndio what?

Lizzie: Si hao ndio sauti za grassroots.

Maryanne: Yes, so hao pia ndio wana faa wapeleke support. So the community, the leaders they need to support anything happening in the community. If there are people with disabilities, who need wheelchairs, they are there to support them and they are there to speak out their needs.

Lizzie: And what about technology, specifically?

Maryanne: Technology ina weza saidia sana like you see now there is Corona. So if they can at least have an app whereby wana educate tu watu kama vijana mtaani, persons with disability mambo ya hygiene, mambo ya sexuality. This should be online if you want to access more information.

Jacinta: I think even in the radio station, when you use the radio station mostly when people in the rural areas are able to access. Waki chunga mgombe wana weka radio kwa maskio so they can get the information through the radio.

Lizzie: So important information can be spread through the local radios. Okay. And our leaders have a responsibility?

Jacinta: Yes, yes. And then that we should have equal representation of persons with disability both in communities and in other stakeholders. Because you find out we have the information, but you don’t have people to represent us in terms of representation.

Lizzie: And what specifically would we want these people to be representing persons with disabilities to do?

Jacinta: When you have somebody who has the same experience with you, it’s very easy for this person to present you there. So they should air our views as it is and not to put it the way they know it.

Lizzie: Okay, and when it comes to specific issues around technology, what specific things do we want?

Jacinta: Well, they should we should have like adaptive devices which are able to reach all kinds of disability. They say, for example, if we have the visually impaired, do we have the software that they’re able to use to access information digitally in terms of technology? I think the government or even the other policymakers should come up with and adapt a technology which is convenient and accessible to all persons living with disabilities can be affordable.

Veronica: My recommendation is, I think the government should work in hand with these non-governmental organizations like This-Ability, like when they want to put something in place. Like they have said they are giving out 100,000 wheelchairs, they give the money to the MP; the MP does not know who people with disability are in that area, they will eat that money. But when they work hand in hand with the organization’s they will know how to reach out to those with disabilities.

Martha: So organizations should learn how to communicate with people with disability and not just assume that they need a specific thing. Because this person with a disability has had this disability for quite something. They have changed various things, they know what works for them and what doesn’t work for them. And if you just ask them, they’re always open and willing to just share with you their recommendations, or the assistive technology or devices that would work and help them to be more productive in their work environment.

Maryanne: If you want to help somebody, they should come to that specific person. You know kuna venye unaskia kuna someone somewhere who needs help but you haven’t gone there and see how many need help. So if the money is sent yule mtu ako chini hafikiangi but alikuja na andikwa. So the best way is to work hand in hand with the community.

Martha: One last thing to add. So of late I’ve been going through this assistive technology, online learning session, sort of, and we are various organizations that are trying to create assistive devices that are not just physical, but on the online space. Like the one we’re trying to create awareness, but through online methods, and they’re also trying to so one of the organizations is trying to link up sign language interpreters with children who are deaf. And you know, it doesn’t have to be physical, they can do this online. And so organizations should also look into that, do we have to physically create this product or can we create it in such a way that it will reach more people and it will be more convenient for them. So I’m also as innovators and as young people with disabilities that’s something that we should also think about. As you’re growing up as you’re looking at your community, is there something different that you can do or is there something that you can create that will help with the next generation?

Lizzie: So thank you ladies. I don’t know about you, but I had a very enjoyable time. Thank you for maintaining the energy level despite it being lunch time.


Lizzie: We are very thankful. I hope it was useful. Sawa sawa, so if we call you will come back?

Martha, Veronica, Maryanne & Jacinta: Yes.

Lizzie: Thank you.

(MUSIC) Outro

Lizzie: I am Lizzie Kiama and you’ve been listening to PAZA! Conversations with women and girls with disabilities globally. You can also follow This-Ability of Twitter an Instagram @this_ability_ ke and on Facebook

Join me next month for another stimulating conversation. In the meantime, follow us on Twitter @pazapodcast to continue the conversation on the experiences of women and girls with disabilities. Until next time, stay safe.


Paza – Episode 5

PAZA Podcast

GBV during COVID-19: Exploring the realities of gender based violence among women with disabilities

Recorded Thursday June 25, 2020

Full Audio-Text Transcription

(MUSIC) Intro

Click above for Paza Episode 5 Audio file

Hi, I am Lizzie Kiama, welcome to PAZA! Conversations with women with disabilities globally. PAZA! a Swahili word meaning to amplify is an initiative by This-Ability Trust. PAZA! seeks documenting and creating visibility for the experiences of women and girls with disabilities

Join our conversation on Twitter @pazapodcast, you can also follow This-Ability of Twitter an Instagram @this_ability_ ke and on Facebook

Now, let’s get into today’s topic of discussion.

Lizzie: So let’s get into it. Thank you, ladies, for joining us on this podcast my name is Lizzie Kiama and I am the Managing Trustee at This-Ability Trust.

So I would like to thank you both very much for joining us this afternoon. And I guess I would ask you to introduce yourselves. Soneni, if you could just give us your name, your organization, if applicable, or the work that you do, very brief, and the country that you’re from, and then we’ll move on to Patience.

Soneni: Thank you so much, Lizzie; for inviting me to this space to come and share what women with disabilities have been experiencing due to COVID-19. I’m from Zimbabwe; I’m a broadcaster by profession,  I’m a speaker, I’m a poet and I’m also an ambassador for two organizations representing persons with disability. An international organization which is Action in Disability and Development and a local organization through the Ministry of Health in Zimbabwe Stop TB Zimbabwe, which basically is its own health matters. And I’m from Bulawayo, which is the second capital city of Zimbabwe.

Lizzie: Great, thank you. Patience?  A short description of who you are, where you’re from, and a little about the work that you do, or organization you represent?

Patience: I am Patience Dickson from Nigeria. I am from organization called Advocacy for Women with Disability Initiative; it is an organization that advances the cause of women and girls with disability, it’s also in national organization. I think just a few things about myself is that I’m the founder of this organization and I work closely with the government, I work closely with other stakeholders as well,  with MDAs like the ministries.

Lizzie: We wanted to also look at the leadership and the positivity that is the lives of women with disabilities. And with that, I think we would like to borrow from your lives and the leadership and innovation and creativity that you have lived life as women with disabilities and their resilience in that.

So I would start with you, Soneni. I understand you are known as being very modest in blowing your own trumpet and in the work that you do. But we all know particularly me on social media, I see you everywhere. So could you talk about some of your accomplishments, tell us a little more about what you’ve been doing and blow your own horn. Tell us about your work and who you are.

Soneni: Thank you, Lizzie. I believe that the most important factor, for someone with a disability, is first identify yourself; who you are while you are on earth. Why are in that particular area that you’re from? And why you carry that surname of your family? Once you understand that calling, then begin to pursue that. From as early as a little girl, I knew that I was going to be the voice of the voiceless because in everything that I did. I was born with a disability, even playing with my sisters, and my friends, I was always the one that is a speaker. If the girls are fighting, they would come to me and I narrate what happened. So I knew from that time that I was born to speak; and not just to speak nonsense, but to speak the truth to defend people to make sure that human right matters are always in the forefront for those that cannot speak for themselves. So, in simplicity, I view myself as a total human being. And particular being a woman, I see myself as a whole woman. And there is no difference between me and my able bodied sister. The only difference that we might have is the physical appearance and the height appearance. And yes, I do agree that the opportunities are totally different, particularly in the area that I chose; which is journalism and broadcasting, you will find out that the environment is not disability friendly. But that has not stopped me from pursuing my dream and my call – to become a speaker, to become a programme producer and to become the presenter of the programme that I want. So understanding who you are, and being faithful to the call, and also having some kind of faith and belief in yourself, why you’re here on Earth. That gives you the confidence to live another day, even if the world is against you. But you will know that you’re born for a purpose. And also having a family support; having families that believe in you, having colleagues that believe in you. Surround yourself with positive people all the time and link together and run for the common cause. It’s not easy being a disabled person, and worse being a woman, because you always on the secondary matter, whenever opportunities are there, you’re the last person that they think of. But that shouldn’t stop anyone from doing that. So, in a nutshell, I believe that I’m a game changer. I believe in myself and what I desire, and I believe it’s God’s call for my for myself, I run with it, and I know that is for the good and the cause for my country, my community and the world.

Lizzie: Wow. Thank you, Soneni. Patience, we know each other, we go way back in terms of our advocacy, but I think it would serve the listeners well, to get to know the powerhouse behind Patience Dickson. So please, could you maybe share the inspiration behind the initiative that you began the Advocacy for Women with Disabilities Initiative? What was the inspiration behind that?

Patience: Thank you so much, Lizzie. Like you rightly said, we’ve been working together for some time. The initiative I think is just built on experience of a woman with disability. It actually started from the experience of a girl child with disability, way back when I was very young. As a child, I didn’t have many opportunities; I just had few opportunities. I can’t say I wasn’t allowed to go to school, but I did not go to school on time. And I’m sure many of us know why – because disability in our own culture, especially in Nigeria, at that time when I was growing up, a child with disability was not actually seen as a child; she was seen as a different kind of child. And so as a different kind of child, that child is not allowed to also aspire to be like other children, in terms of education now. But I was just lucky, destiny played a good one on me and I was just lucky to have been found by someone who actually said nice things about why I should I should be educated and that was the power behind my life and it’s really pushed me forward. When I was registered in school, it was one the happiest moments of my life. And it brought me out to where I am today. That is why one of my whole philosophy is if you investing in a girl child with disability it is not a waste. It’s also definitely builds more on the women or that woman when she’s mature. Investing in this child, we definitely build a woman with disability.

And so that zeal, that passion in me, I said, okay, why don’t I gather around and look for women like myself – strong, educated women with disability like myself. And we came together and we started the initiative for women and girls with disability. And I tell you, it has been awesome because many of us have been able to work on ourselves. You have been able to work on our self-esteem and we have been able to build so many women especially those of us in the community, who are not educated, who does not even have an income, who have one issue or the other. So, the initiative is now becoming a powerhouse for women and girls with disability and so other people with disability who care to join us. So that is the inspiration behind my own life and also around the initiative, it actually based on investing in the education of the girl child with disability.

Lizzie: Wonderful, thank you, Patience. And thank you both, Soneni and Patience, I’m sure hearing about your personal experiences, your personal journeys, it’s going to be useful to a lot of our listeners. And useful in working towards shifting the medical and charity narrative that is prevalent when it comes to women and girls with disabilities.

Now, this particular conversation is supposed to, is looking to highlight the situation of the COVID-19 pandemic. And I’m curious about your, the context in your particular in your respective countries. In Kenya, for example, on the 1st of April, our Chief Justice Honourable Moraga released the statement towards the fact that there has been a significant spike in sexual offences in many parts of the country during this period of the pandemic, and these offences constitute 35.8% of criminal matters being reported during this period. So I’m just curious, in Nigeria, in Zimbabwe, has there been an increase in Sexual and Gender Based Violence.  

Soneni: We have experienced a different type of Gender Based Violence during the COVID-19 for women with disabilities. We know that women with disabilities are very vulnerable to abuse, sexual abuse, and reporting is a great challenge. So you will never come up with statistics of women that had been abused, raped or being beaten up by their partners or family members or anything like that. But they tend to keep quiet more so because the offenders are breadwinners, people that they stay with or people that have confidence in. So what we have realized that in the city that I’m coming from we had a water crisis. This water crisis is where we have water cuts that would go for hours and later on, it would come in the midnight, depending on what area you’re staying in. So what we have noticed is that there are some women that depend on help from either their neighbours or their family members. And you will find out that there’s a there’s a different type of abuse, whereby women are saying they’re not able to go and release themselves in the toilet because how do you flush your toilet when you don’t have water? And you depend on someone? If the boucers, we call them the boucers, if the boucers come and it’s at midnight and you can’t will yourself to fetch water. So what happens, you have to depend on someone to bring that water for you.

Lizzie: Thank you, Soneni. I think in Kenya as well, we can resonate with some of the things that you mentioning. We keep hearing advice from the government, for example, you know, talking about sanitizing, talking about washing your hands. And the reality is, as you mentioned, access to clean water is not a reality for the majority and particularly persons with disabilities and women with disabilities who might be living in informal settlements, you know, it’s not a case where you turn on your taps and there’s water. And here you’re talking about rationing, but there are the informal settlements in Kenya where people have to buy water. So your income sources have been cut short, and then you’re supposed to choose between spending money for water or for food. So it’s a reality that the majority that live below the poverty line have to deal with on a day to day basis. So I totally hear you. I hear you there.

Patience: In Nigeria right now we are having issues and issues of rape and killings. Violence, domestic violence is taking a different tone; even families are part of it. You can agree with me that people with disability are very closely connected to family members, connected to neighbours, connected to friends, connected to colleagues, connected to people around them. And are the people who are always involved with violence and sometimes people with disability are not even able to flee from this violence because of our nature as women with disability. And even girls are even worse, because they are more vulnerable because they are girls and they have a disability, so they are more vulnerable.

Lizzie: But I’m just wondering, in your various contexts, what has been the reception of women with disabilities that take forward cases of violations, particularly sexual violations? Has there been quick action on the part of the police, for example? Do they have a culture of believing the witnesses or is it like Kenya when depending on your disability, then there is an extent to which the police can believe you and, they might need other witnesses to come forth.

Patience: In Nigeria we have the VAP Act, which is Violence Against Persons (Prohibition) Act. I think that is what many states are using even though in many states that have not domesticated this law. But that working for us even though it’s not really, really, inclusive of women with disability is still vague, and I see it in the general sense of all women and girls. So but that is enforced and that is what we are using. And then we also have the Discrimination Against Persons with Disability Prohibition Act that was just signed into law. And that is also another instrument that we are using in Nigeria. We just started using it both, we still have a challenge because it has not been domesticated. But by and large, like you have said, we still have issues around rape, violence, around testimony from women from girls or women with disability because like you rightly said in Kenya; and that is how it is in Nigeria. Because law enforcement agency actually do not believe the story shared by women and girls with disability because it’s based on perception and mindset that their testimony will not be good enough. And so just the mindset that they are girls with disability who will violate them? Who will rape them? There are better girls, they are beautiful girls around so who we go and rape a girl with disability? Who we go on raping a woman with disability? Who will take a woman with disability by force?

Soneni: What I believe we need to do as women with disabilities is to come forth and change the description of what is Gender Based Violence is. Because the world thinks that Gender Based Violence is beating someone blue and red. They think of able-bodied women only, and men as well being abused. So we need to come to a table and explain and define that when we say women with disabilities are experiencing Gender Based Violence what do we mean? Because every disability has one encounter of a different type of Gender Based Violence. And people need to realize that we have so many women that have been abused, and their cases haven’t been brought to the forum because no one is going to believe them.

In my country, Zimbabwe, yes, we’ve had some cases where people, either there’s a strong family member who believes that this girl was raped, so they take it up to the right to the top. But then what about those girls that do not have the backup system? So we need to align our laws, as activists as well, we need to start speaking out; what do we mean when we say Gender Based Violence?

We have issue with transport, I don’t know if it’s the same thing with other countries. So someone that is only a wheelchair, when she’s being lifted onto the bus, by a stranger or conductor, the manner that the person is holding the woman with disability has physical contact, and because you are helping I think I can’t speak up. So I have to keep quiet. But you do not have to hold my bums when you’re lifting me into the bus. You do not have to hold me close to you. This is my body and I have every right to protect my body. So there’s a very, very thin line between a normal way of carrying someone and abusing someone while you are helping them.

Patience: Yeah, I just also want to say that even abuse can also happen in the school system, especially in the institution where you have people who are intellectually disabled.

There are some special schools, we have special schools in Nigeria right now, and especially for those who have psychosocial disability. And a lot of abuse has been going on in those institutions. There is a School for the Blind in Abuja, where I resided in a few months ago, we found out that the girls being transported from home to the school were being abused in the bus by the bus driver; it has been going on for some time. So at a particular time, the girls raised an alarm, and of course, there was denial and all that. And then it was I found out that this man is actually related to the headmistress of the school. And that she tried to cover it all up. But when we find out, we took it upon ourselves to report the situation. And it was reported to the Human Rights Commission and I think this case is still ongoing right now. So this abuse can happen anywhere, like Soneni said, anywhere we have people not because they are people with disability, but people. It can happen anywhere but for women and girls with disabilities it is worse because they look at us like helpless people. And so it is worse, definitely. So we also need to, like she said, we also need to look at the different categories of disability.

Soneni: What I wanted to add, I don’t know if it happens in your culture, in our culture, my sister’s husband is automatically pronounced as my husband.

Lizzie: Oh?

Patience: Okay.

Soneni:  Yes. So what happens you, you have hearing impaired girls, that when they’re living with their sisters, the husband thinks that he’s got a right into that girl’s life. And because that child is not empowered, then you find out there’s a little physical touch. He is the person that will rape that girl and that girl will not say anything because it’s her sister’s husband, she is staying with the sister and because she also thinks that it is right, because it’s my sister’s husband. So we also need to break the cultural belief. How do we define culture? And how do we define abuse? We have girls who become pregnant and she won’t say who made her pregnant. We have so many single mothers that are hearing impaired, we have so many single mothers that are disabled, but it’s because of those hidden abuses, Gender Based Violence that takes place, they are not defined and we don’t explain it to the world to say this needs to come to a stop.

Lizzie: Culture definitely has a role to play in creating an environment where this abuse can thrive and fester in our communities.

(MUSIC) Interlude

Lizzie: Support for our work on the rights of women and girls with disabilities comes from both profit and non-profit organizations, including private well-wishers.  Next, we have an appreciation statement for one our donors. 

Partnership Donation Appreciation – UNFPA

This-Ability Trust thanks United Nations Population Fund (UNFPA), in conjunction with the Kenya Red Cross, for their Humanitarian Covid-19 Support of 200 dignity kits.

The Covid-19 pandemic has made life a lot harder for women with disabilities; access to basic essentials such as food, water, and generation of income is near impossible for them during this period. These kits will alleviate some of the challenges women and girls with disabilities are experiencing during this pandemic. The dignity kits will reach 200 adolescent girls in 8 counties across Kenya.

Thank you, UNFPA for your generous donation and for supporting women and girls with disabilities during Covid-19.

This message is approved by This-Ability Trust.

(END OF MUSIC)  End of Interlude

Lizzie: Welcome back. You are listening to PAZA! Conversations with women and girls with disabilities globally. Remember to follow us on Twitter @pazapodcast.

Lizzie: Gender Based Violence manifests itself in different forms and affects us, as you rightly said, both you Soneni and Patience, it manifests in different ways for women with disabilities. The specific disability and the interaction with that violence is also another unique experience.

Lizzie: Our work focuses on amplifying the realities of women with disabilities, let’s hear from Regina from Uasin Gishu County describing her personal experience with physical violence.

Regina’s recording – from Uasin Gishu

When I was in a relationship, my first relationship, the number of abuses and it was worse for me because, one, I am a woman with disability. So I went through physical abuse and it was hard because I didn’t get any support.  When I would just explain people saw it was right for it to be done to me because I am a woman with disability and being in the relationship it was like sympathy for me to be in that relationship, so whatever this man was doing to me people did not take it seriously. They didn’t even mind. It was like it was right thing being done to me, being abused. And then I am a woman, a woman married to a Kalenjin man, so it’s his right to abuse you, beat you properly, beat physical. So a number of times he would beat me up and it was ok to everybody. Nobody would help me. In fact I didn’t report to the Police Station because for me I felt it was right in some way. So I went through a lot for more than one year.

Soneni: Yeah, Regina tells the true story of an African disabled woman that is involved in a relationship and yet is abuse in that relationship, and nobody will believe you. But also trying to be a woman in the community making it at the same time, you have this abuse within your own, someone that says they love you, but then they go on to abuse you. I believe that disabled African women experience similar abuses, or they might be a bit different. The narration is exactly of the stories that I’ve heard for my country, Zimbabwe, where women go into marriages and they’re abused and they keep quiet. But until there’s that one angel that comes in, empowers that woman, and she gets out of that marriage. So it’s a true voice of reflection of the Gender Based Violence among women with disabilities as a whole.

Patience: There’s one thing that I always see especially with women who go through this kind of pain and torture that it’s not easy to break out. So let us come together in this campaign of breaking the silence. If we don’t break the silence, we won’t get perpetrators to book us, even if this perpetrator is our partner. Abuse is abuse. It causes a lot of pain and trauma on the victim, which is mostly the woman, it could also be the man; the victim could also be the man. Breaking the silence is key. We keep preaching that in our advocacy drives, for us to break this and make a difference we must come up with something tangible in our countries, in our communities we need to empower our women, empower our girls, so that when such things happen you think of the next step – and that is breaking the silence.

Lizzie: Just quickly, do you do you have any suggestions for a woman with a disability who finds herself in a situation like Regina’s? What would be the best way forward? What would be the course of action? What would be advice that you would give this woman who is being physically violated by their partner?

Soneni: My encouragement is get out of that relationship. Find someone that you can talk to. And these days we have the internet, where you can confide, there are so many organizations of persons with disabilities in each country that you can go for help. You can even go to the police, but don’t stay in that relationship, it is not worth it. Love is not like that, even if it’s a family member that is abusing you. Love does not abuse. My encouragement is find strength within you, speak for yourself. And once you break that silence, the entire world is going to believe you and they’re going to support you.

Patience: And the only advice I have for Regina is for her to be happy. She needs to do the needful and the needful is, as Soneni said, get out of that of that relationship because remember when you are in a marriage that you are not happy, or when you are in a partnership that is not making happy, you are always sad and you always been abused. I don’t think it is fair for you to be there. I wouldn’t be there. I don’t know if it’s me. I wouldn’t be there. I will take a hike and leave immediately. Even there are even some religious bodies now that are against violence, they will preach it in the church to say if you are in a home where they are violating against you just leave, why? What are you doing there? There is nothing, there’s nothing there for you. It doesn’t hurt, it’s not supposed to hurt you. So be happy. Just go away and make yourself happy in any way that you can, so that you don’t experience such nonsense anymore. That is not why you are here on Earth. You are here for a purpose, and definitely hurting you is not part of that purpose. That is just my thinking.

That is why we need to be talking to people. Once you are talking to people, you are building this healing, inner strength, we are building the healing inner strength and also building support around you, around your family, around your friends who can help you where you are no longer there. So it is better to leave than to lose yourself or to lose your life. That’s the way I see it.

Lizzie: No, that’s true. I agree. I totally agree. I’m agreeing with everything you’re saying Patience. I’ve seen situations of perpetrators, you know, being very systematic in how they violate you. So it starts you know, probably with emotional violence that is, small, small things. So you think, oh, he’s not beating me physically so this is okay.

Soneni: If I’m in a relationship, and I’m your friend, I must openly talk about my relationship with my person, so that you can begin to sense if there’s something wrong in my relationship. But if we have secret relationship, and you don’t openly talk about your relationship, and you’re always covering for your partner, or you’re never out as couples or as partners, but you’re always protect, you’re always protected – there’s a danger in that, that’s why people discover things very late. It’s because they did they don’t have anyone that they’re accountable to.

So once you enter in a relationship, treat it normal. Talk about your relationship. Ask for advice from those that have been in a longer term relationship. Check yourself out, check the other person, if he’s got certain habits that you’re not sure of that has happened to you, if let’s say you’re in a wheelchair, he goes out he leaves you, check if that is normal or abnormal. Most of these things happen because people are not aware that it is wrong. They think it is right, he is doing me a favour, he loves me, that he’s protecting me, he’s saying I mustn’t go out with him, because people laugh at us when they see us when they see us together, so he’s protecting me. In the meantime, it’s just adding and adding and adding, he doesn’t give me money in the public because he doesn’t want people to talk about it. No. So let your relationship have an accountability.

 (MUSIC) Interlude

Lizzie: Support for our work on the rights of women and girls with disabilities comes from both profit and non-profit organizations, including private well-wishers.  Next, we have an appreciation statement for one our donors. 

Partnership Donation Appreciation – Kotex

This-Ability Trust thanks Kotex, in conjunction with Verde Group, for their Humanitarian Covid-19 Support in the donation of 20 boxes of sanitary towels for women and girls with disabilities. 

Women and girls with disabilities face challenges in accessing Sexual & Reproductive Health and this includes access to hygienic menstrual products. The sanitary products will reach 300 women and girls in 8 counties across Kenya.

Thank you, Kotex for your generous donation and for supporting girls and women with disabilities during Covid-19.

This message is approved by This-Ability Trust.

Lizzie: Welcome back. You are listening to PAZA! Conversations on women and girls with disabilities globally. Remember to follow us on Twitter @pazapodcast.

(END OF MUSIC) End of Interlude

Lizzie: Our work focuses on amplifying the realities of women with disabilities, let’s hear from Wanja from Embu County describing her personal experience with sexual violence.

Wanja’s recording – Embu

For me, I am epileptic. The first thing, my extended family, especially my cousins, started calling me a crazy woman, that I am bewitched. They would call the Wakorinos (a religious sect), they (the Wakorinos) would fill water in a tank and throw me in there claiming they are removing demons from inside me. Sometimes they would cook dog meat and force me to eat. My legs are usually in pain. Men rape me. And I have nobody to turn to. If I report to the chief, they all claim that I am a mad woman. At home I have nobody to trust, being viewed as a burden because for people with epilepsy we depend on daily medication. And if, for example, someone rapes me when unconscious after an epileptic seizure, I don’t know what was done to me, or any awareness of the act, until after some months when I noticed that I have missed my periods, and I found out I am four pregnant, like in the case of my first my born. I don’t even know where he came from or who his father is. I remember I was in Kerugoya, had lunch somewhere, I had a seizure, I don’t remember what happened next.

Lizzie: Guys, any reflections? Do you experience the same? Do women with disabilities with different kinds of conditions, do they experience the same kind of violations in your countries?

Soneni: Another narrative that is very close to the experiences of people with intellectual abilities go through. I can recall there’s one case that I know, I had a conversation with a woman with a mental condition, she lives in a village. She’s been raped by a local person and he still walks around. She was narrating that every time that she sees this man, she’s got so much fear that she thinks that he’s going to rape her again. Justice was not served for that girl because of a mental condition where she cannot testify because of a condition. So these stories are there, they are so real. And that’s why I keep saying if we have policies that protect our women, so that when they do report these cases it’s not going to be a matter of do I believe her, but it’s a matter of what the law says. So we really need to make sure that our law enforcement is very disability friendly for women with disabilities.

Patience: So apart from what Soneni said on policy, we also need to engage families to empower them, so that they can also we can also build a kind of trust in them. Then can they can be engaged. Some of us who are into this work where organizations or persons with disability or human rights advocates, I mean, people that have passion about this work can also lead so by the time we now have this kind of conversation around the families and how to engage them to build trust around them, to also make them know that this kind of thing doesn’t just happen. We don’t want it to happen in our system, in our community. So the family plays a very big role in the lives of women and girls with disability, especially when it comes to psychosocial disability. So we need to engage some of these families, to build trust in them. And, of course, I also actually believe in the fact that policies need to be a disability friendly because, of course, that is the key to the whole episode and the whole idea.

Lizzie: So from both of you, I hear that, you know, the experiences or the violations of women with disabilities are not unique to, for example, Kenya alone. These are things we can collect some of the same cases of violations in Zimbabwe, and also in Nigeria. So it’s not a unique experience to Kenya. And also, I have heard that, you know, there are several action steps that we can, we can begin to incorporate in our work to address some of these violations from advocating for policies but also to working with the communities and particularly the families and caregivers of individuals with disabilities. But I wanted to find out, what other advocacy strategies do you have in your respective countries? What has worked particularly in terms of advancing the rights of persons with disabilities? And what can we borrow from one another?

Patience: It took us about 20 years for the Discrimination Against Persons with Disability Prohibition Bill to be signed into law by this present administration. It kept jumping from one administration to the other until we finally got was we have been advocating for. And that is because people in the organizations of people with disability did not relent. So engaging people and organizations of persons with disability is key. That is what we are also talking about in this COVID-19, that is why during the lockdown period it didn’t go over well with many persons with disabilities because people with disability and the organizations were not really on board, on the table of discussions when preventive measures came out. In fact, people with disability we actually cut off. It was when we started to advocate and say, no, you cannot, you cannot cut off a community of persons with disability. Over 25 million people with disability, as estimated in Nigeria, can never be cut off just like that. And at the end of the day, the government started to bring us on board again. We now have preventive measures in sign language format, in some accessible formats, and things like that. So we are now being a part of the discussions and also prevention. I am not saying that we are there yet, but what I’m saying is that engaging the organizations of persons with disability is working for us in Nigeria.

Soneni: We’ve also been doing similar actions in Zimbabwe, like what Patience is saying, but we are running with PRPD, I don’t know if you’re familiar with that one, Partnership on the Rights of Persons with Disabilities, where we are empowering women and girls with disabilities to identify who they are in their communities and empower them through workshops, empower them through training on how to speak with members of parliament to express their views. Because they voted for members of parliament so they should, members of parliament should take issues concerning persons with disabilities to Parliament, to try and solve some of the issues that are coming from the communities; such as rape, such as lack of food, such as lack of employment. I’m working with different organization, because of my background in what I do, I affiliate myself with so many organizations that promote disability rights movement, empowering the girl child on how to be confident, to speak for herself and also include families and educate families on the importance of persons with disabilities; that they shouldn’t keep them at home. But rather, they should treat them like any other children. If they have other siblings give them opportunities. If there’s education, you’re educating your children, don’t leave out a person with a disability but include them in highlighting issues of disability within a home community and also the country. So that is where we are in Zimbabwe.

Lizzie: I have truly, truly enjoyed this conversation. So, in parting, any last words that each of you has?

Soneni: I would like to say, remember disability issues or human rights issues, and every woman has a right to live. Every woman has a right to a voice, and every girl child has a right to education. And every girl child has a right to live a life, even with a disability. And during this COVID-19 let’s all remember, protect yourself to protect others. And coming from Zimbabwe, I say thank you Siyabonga, Tinotenda.

Patience: Thank you, Lizzie for inviting me, I really enjoyed myself. And I just want to end this by saying that the goal is not about making women with disabilities stronger, because they are already strong. But the goal is all about changing the mindsets and perceptions of people. So that they know that persons or women with disability are indeed women first before the disability; and that is what we are trying to, to bring on board change and make a difference.

Lizzie: Thank you both. This would not have been as vibrant as it was without your voices. Thank you for agreeing to be part of this and contributing all your energies towards this, I’m truly appreciative. I hope you would join us again. And I hope we can continue the conversation on social media. And if you have an idea for another conversation that we could all have, please reach out.

 (MUSIC) Interlude

GBV Resources:  Toll Free Helpline 0800 720553 and 0800 730999

If you or anyone you know is experiencing or has experienced any form of Gender Based Violence please toll free number 0800 720553 managed by the Coalition on Violence Against Women (COVAW) or toll free number 0800 730999 managed by the Directorate of Community Policing, Gender and Child Protection to seek immediate assistance.

Again, if you or anyone you know in your community is experiencing or has experienced any form of Gender Based Violence please call 0800 720553 or 0800 730999.

Stay Safe out there.

This message is approved by This-Ability Trust.

(MUSIC) Outro

Lizzie: I am Lizzie Kiama and you’ve been listening to PAZA! Conversations with women and girls with disabilities globally. You can also follow This-Ability of Twitter an Instagram @this_ability_ ke and on Facebook

Join me next month for another stimulating conversation. In the meantime, follow us on Twitter @pazapodcast to continue the conversation on the experiences of women and girls with disabilities. Until next time, stay safe.


Paza – Episode 4

PAZA Podcast

Sexual and Gender based violence in the global pandemic: Exploring the experiences of women and girls with disabilities

Recorded May 8th 2020

Full Audio-Text Transcription


Click above to listen to episode 4

Hello everybody thank you so much for joining our conversation in PAZA. PAZA a Swahili word meaning to amplify is an initiative by This-Ability Trust seeks to document and create visibility for the experiences of women with disabilities globally. We look forward to hearing from you, so remember to show your support and feedback on your social media platforms to continue this conversation please follow our Twitter page @PazaPodcast.

For more content on This-Ability’s work and projects please follow This-Ability on Twitter and Instagram: @this_ability_ke and on Facebook:

Now, let’s get into today’s topic of discussion. 

Lizzie: Good afternoon, everybody. We’re very pleased to be hosting the fourth episode of the PAZA Podcast. And today’s topic of conversation is Sexual and Gender Based Violence (SGBV) during COVID-1: Exploring the Experiences of Women and Girls with Disabilities, and on today’s conversation, we have amazing speakers that represent communities of women with disabilities in the counties, and I will allow them to introduce themselves. Easter, do you mind going first?

Easter: My name is Easter Achieng Oketch. I’m the Executive Director of Kenya Female Advisory Organization (KEFEADO) and we work in the western Kenya region, that’s about 14 counties in western Kenya. It’s my pleasure to be with you here today.

Lizzie: Thank you very much. Fridah?

Fridah: My name is Fridah Wawira Nyaga I work with Coalition on Violence Against Women (COVAW). I am the Program Officer, also the Communication Officer. I am based in a Narok but our head offices are in Nairobi. We are in six counties in Kenya where we are implementing various projects.

Lizzie: Thank you very much. And my name is Lizzie Kiama and I am the host for this podcast. I am also the Managing Trustee at This-Ability Trust where we work to advance the rights and inclusion of women with disabilities in Kenya. So, ladies, shall we get into it! Easter, could you tell us how KEFEADO works specifically around issues on sexual and gender based violence.

Easter: KEFEADO which is, Kenya Female Advisory Organization, has worked in this area of women and girls empowerment for a long time, and we use an intersection of an intergenerational approach, which means that we look across the board – who is at community level, who is a female, and how then they engage with different issues at community level. So, one of the things that we have done is that in our different programs within the schools where we work and within the communities where we work and within the different institutions we’ve worked with, we have realized that there’s been a lot of issues of gender based violence within communities and in different forms. So that different forms of Gender Based Violence which have noticed is FGM within Mt. Elgon, where we worked, and even in Kisii. And also there is high level of Sexual and Gender Based Violence which happens at community level.

One of the things we notice during this COVID period is that it has increased and the levels of violence which we are looking at, apart from just the sexual violence which is being perpetrated, we are also seeing physical violence, we are also seeing economic violence and we are also seeing a bit of the mental issues which are coming from those close issues. So mental violence, emotional violence is also being seen. So those are the issues which we are dealing with during this COVID period on how to engage with different people, and particularly with women and girls with disability who, unfortunately, are not reached out to even by the different gender based violence groups, and thus are not being addressed wholistically. Thank you.

Lizzie: Thank you, thank you, Easter.  Fridah, could you possibly could you tell us how the Coalition on Violence against Women works, particularly the projects you have with women and girls with disabilities? Could you speak on that please?

Fridah: Thank you so much. Coalition on Violence against Women is a nongovernmental women rights organization that exists to champion the rights of women and girls to be free from all forms of violence. We are currently implementing two projects that are targeting intellectually challenged women and girls. The project is titled “Enhancing Access to Justice for Sexual and Gender Based Violence Victims with Intellectual Disability”. The project is being implemented in Kiambu, Nairobi and Narok counties has been funded by African Women Development Fund. So what we do in these projects is that we enhance public knowledge and awareness on the rights of persons with intellectual disability. Through this I mean we conduct community dialogues or community conversations about the rights of persons with intellectual disability.

The second thing that we do is we work hand in hand with the National Council to facilitate the registration of intellectually challenged women and girls in the furthest to reach community. That means that we conduct registration exercise, hand in hand with the National Council of Persons with Disability in the furthest to reach areas. Like in Narok County, whereby, it’s quite hard for persons with physical, mental disability to get to their offices, so we facilitate their movement. The third thing that we do is we provide court representation to survivors of Sexual and Gender Based Violence with intellectual disability. So this means that we offer pro bono services – we have a database of pro bono lawyers that we work with and in case there’s a case that has been forwarded to us involving someone with intellectual, and intellectual I mean mental disability, we’re able to offer pro bono services. We give them psychosocial support and also we give them transport to go to the court. Another thing that we have been doing in this project is that we do a lot of lobbying, especially with County Health Committee in the various counties that we are implementing so that we can lobby for an inclusive legal aid policy, sexual and gender based violence framework.  Such as, in the lobbying meeting that we had in Narok, it was an advocacy meeting with the County Health Committee to lobby for exemption of medical assessment fees for intellectually challenged women and girls. Another thing that you’re doing in this project is that we sit in the Court Users Committee (CUC), where we discuss matters on enhancing access to justice for intellectually challenged women and girls. For instance, in 2019 through the Court Users Committee COVAW was able to push for an open day, a CUC legal day and also we are able to push for a Judiciary Service Week, where they prioritized 48 cases of survivors of Sexual and Gender based Violence that had been pending for quite some time. So that is basically about our projects on access to justice for girls and women with intellectual disability.

We have another project that we are about to start next week, it’s from Humanity Inclusion, it’s a seed fund and it is in response to Covid-19 pandemic. So we will be providing food package, sanitary towels, airtime, tissues, soap and masks to at least 100 families with girls and women intellectual disability. The second thing that we’ll be doing in that project is that we will be having a back messaging to general public on educating them on safety measures during Covid-19 and issues to do with prevention of sexual and gender based violence. We are currently conducting a mapping exercise of 100 families with intellectually challenged women and girls from low income earning areas in Nairobi,  that is, Mukuru Kwa Njenga, Dandora, Mweki, Kiandutu. So that is basically the two projects that we have that are targeting women and girls with disability.

Lizzie: Great. Thank you. Fridah.  I just had a follow up question. The first project you were talking about, among other things, it also looks to create, generate knowledge and create awareness in the community. So I’m just curious, particularly in the counties that you work in, what has been the community perception of the groups of women, particularly the women and girls with intellectual disabilities? What was the existing community perception?

Fridah: The first thing that I would say is that there is a lot of stigma, discrimination towards women and girls with disabilities, especially in Maasai Land, whereby, women and girls with disability as viewed as a curse or bad omen. It’s quite sad to note that even in the most interior parts of Maasai Land, in Narok, when a woman gives birth to a child with a disability, they are stigmatized and some parents end up throwing these children in the forest. They are not dressed, they are not fed. Another issue is the communication barrier, you find that girls and women intellectual disability may not even know if they have been sexually abused, not even know how to report. And lack of family care and support, whenever an incident is reported or occurred, you find that no one believes them. This leads to frequency of occurrence, for instance, I was abused as today and even last week I was abused but when I come and share with you that I was abused no one believes these people with mental disability.

The other thing is institutional failure, you find that that even the police officers, we don’t have trained police officers, we don’t have gender desk, specifically dealing with persons with mental disability. So there’s a lot of communication barrier, stigma and discrimination. When you go to the hospital in Narok County, most of the hospitals or health facilities they don’t have a sign language interpreter. So there is a communication barrier between a person with mental disability and the health professional so you find that they are not able to access sexual and reproductive health services.

Lizzie: Thank you. Thank you.  Easter, going back to what KEFEADO does around sexual and gender based violence, I just would like you to go deeper, not necessarily how COVID has increased of GBV, but what was the current situation even before COVID of women and girls with disabilities?

Easter: One of the things which we are looking at is the same thing that Fridah is saying, which is the lack of service and the lack of structures which are put in place to respond to issues of gender based violence even in the reporting structures. For example, one of the things which we are looking at is that within the referral pathway, when anybody who has a disability would go and report, because of the discrimination of women with disability, if you went to report an incidence of sexual violence, somebody perceives that maybe it was a favor because people are profiled differently.

One of the challenges is that profiling then ensures that the discrimination is never reported because of lack of access to information and access to those kinds of spaces. So one of the things which are also looking at is that within these particular spaces, when you go and report within the referral pathway, we do not have enough structures to respond. For example, if you go to the police station, and if you are having hearing impairments, do we have a sign language interpreter, they’re not often there, so you cannot report. So you have to get someone else who probably might be the perpetrator or will be at a cost to you, who is the survivor. And one of the challenges which you’re also facing is that, for example, if you go and report and you are visually impaired, when you’re writing your statement, how many how do you write your statement? How do you ensure that your statement is well recorded? And part of it is that then when you’re required to go with an aid, what if your aid is the perpetrator? We have had incidences of the police not actually recording what you’re saying as a survivor, so part of it if you’re not able to verify those statements, then it becomes a challenge. So when you need aids within those structures, then it becomes a challenge. And it becomes even worse because we have women and girls, we work with women and girls with disability from rural communities, where there are issues of even hiding them is supposedly very normal. So part of it is that even getting access to these structures where you can state what is happening is a challenge.

And we have seen increased levels of violence and in certain spaces where we are, particularly with the women and girls with intellectual disabilities, we are seeing repeated sexual violence against those particular women. In one of the cases which we are trying to handle now is where a mother is a trader, and has two girls with intellectual disability. Immediately she leaves to go for work, they are violated repeatedly, and they also have children who are also with intellectual disabilities, which means that she’s very constrained. So part of those challenges which are faced within community levels is that unfortunately, government is not really looking after the protection services for this cohort of persons, particularly women and girls with disability in the spaces wherever they are. So the challenges which we note are that we are trying to then push this agenda.

We are also part of the support by Humanity and Inclusion to look at how even to get shelters, and even when we get shelters, are the people within those shelters able to deal with the different disabilities which will go in there. So for example, the women and girls with the intellectual disability need specialized care, are they able to support? Do we have personnel within those structures who are able to support those kinds of women or girls or sometimes there are people with multiple disabilities, who are able to support them within these particular spaces? Because apart from the households where we see and the areas where these things happen, we have also noticed because we work in institutions where we have children with disability. And we also notice that learning institutions are also spaces where there’s a lot of sexual violence against women and girls with disability. So one of the things we are saying is that the structures which are in place do not wholistically protect women and girls with disability from violations. Even in terms of seeking social justice; because in terms of social justice, people tend to think about asexuality so you will not be believed so easily.

Part of it is the bit of where we are talking about the sexual rights of women and girls with disability, people think that you deserve it or you somebody did you a favor, which is a violation of the rights. So the social justice issues which come at community level, and then the legal justice processes. Now, in terms of getting access to justice, even within the court of law, it takes a lot of time. One of the challenges which we face is that some of the girls and women who come from very poor background, so the economic issues, then constrain them from attending court processes. And because you have to keep on travelling to that particular court process, as in your come from a poor background, then you are also constrained within the spaces. So a whole myriad of things which then shows, one is the social discrimination at community level, where the economic issues which then predispose some of these women and girls to the challenges that they’re facing. The issue of the social discrimination, and then the areas where then patriarchy then happens, apart from that issue of that one is that we have also seen that, apart from the sexual violence, early marriages are also done. Because in our spaces where there’s the issue of wife inheritance, there will always look for a girl with disability to be the one who is inherited. So part of it is also the rights on issues of early marriage and the marital rape which is faced within those particular places. So there are many challenges which need to be addressed and it is important for us to raise this issue when you’re talking about gender based violence, because one of the things which hurts me most is the invisibility of the data on the violence which is perpetrated against women and girls with disability. Within Kisumu County we are looking at the data from the Gender Based Violence Recovery Centre, and it’s silent. There’s silence on it, you can’t see that data. So it means that people are subdued so you cannot address the issues which are required even within those spaces to have sign language interpreters, to have examination beds which are commensurate to the different disabilities, like the physical disability which is needed during examination. So part of it is that we also have to talk to ourselves as people who respond to issues of gender based violence. That why do we think that data should make women and girls with disability invisible, they shouldn’t be invisible, they should be visible so that their needs are addressed.

Lizzie: Thank you. Thank you, Easter. And just to touch on what both of you spoke about, you’ve talked about invisibility, Easter, you’ve talked about invisibility which then spreads and shows itself in the lack of policy, the lack of implementation and also in our programming. But also on the other side, Fridah, you’ve talked about, you know, knowledge creation, awareness creation, I’m just wondering, at what point do we begin to see a difference because we as NGOs, as nonprofit organizations, we invest quite a bit in awareness creation and for me and maybe this is a personal fight, maybe I should stop fighting this fight. I feel like everything is rooted in the unconscious bias. We walk around on our perception of disability, you know, our experience with disability, the non disabled people and even disabled people themselves, there is this negative perception we hold very dearly. And that comes out as unconscious bias, which then magnifies the invisibility, it magnifies the lack of specific language in our policies, and also trickles down to our programming. So I’m just wondering when we are working around awareness creation, what do you think that we need to do differently in order to bridge this gap of invisibility?

Easter: My take, I think you’ve done enough awareness creation. Part of what we are looking at is that beyond just awareness, there are policy issues which we need to demand for. And it means that who is sitting in the room when the policy issues are being discussed. So in terms of for example, we have various sexual and gender based violence policy documents and who it’s supposed to target. So part of it is that the policymakers, are the duty bearers actually been to task. So, part of it is that in terms of what we are looking at is that we need to be able to start tasking duty bearers to actually listen. If you look at the history of what the women’s movement has been able to do, is to be able to put enough pressure. So are we able to start developing a movement beat, a very pulsating movement which they are asking you to bear us to actually the answer to the questions. One of the challenges which are faced is that sometimes women’s with disability organizations and individuals are also invisible within the disability movement itself. So part of it that the patriarchy within the disability movement means that women issues are subdued by other disability issues. So for example, in the response, people are not even talking about the sexual violence, people will talk about economic issues, which then targets the other gender. So part of it is that how do we rally women within the movement in the disability movement to be stronger, to capacitate them to go beyond awareness and start sitting on those particular policymaking spaces and demand. So how do we also capacitate because one of the opportunities we have, for example, we have a senator, a nominated senator who is sitting at a policy level, Hon. Danita Gati. So how do we target such persons like honorable Danita Gati, to push beyond just policy development to policy implementation? The challenges we face is that we have very nice disability policies even within the county with no implementation framework, and with no financing framework, so you have this disability board within the county and maybe at national level with no money and no other resources to be able to move. So even within the counties we need to target the disability boards and ensure that they implement the policy and ensure that the visibility of the issue of disability is actually budgeted for. Then we will ensure that we go beyond just creating awareness to implementing whatever frameworks which we really need to implement and ensure that we have activities which are targeted to alleviate the challenges which are faced particularly on the issue of gender based violence against women and girls with disability.

Lizzie: Thank you. Thank you very much.  Fridah?

Fridah: In regards to the question that you have asked, I think we need a very well coordinated GBV response team at county level, especially among the justice actors, hereby I mean like, at the police station when a case is reported, let’s have a gender desk, not police stations have gender desks. When the case is taken up by the prosecutor, let’s have someone who understands persons with disabilities. In the courtroom, let’s have the magistrate with intermediaries in this court whereby persons with special needs can express themselves and be understood so that we can enhance access to justice. Second thing, NGEC has a policy model, but in Kenya very few counties, I don’t know how many counties, but very few of them have county specific sexual and gender based violence policy. So I think we need to borrow a lot from the NGEC model on SGBV so that we can tailor-make those policies and then we lobby for gender responsive budgeting. When counties are doing budgeting lets ensure in our lobbying they put resources in place. They put resources to put up shelters and infrastructures so that women and girls, survivors of gender based violence can seek refuge when they are faced with violence. Thank you.

Lizzie: Thank you very much, Fridah. Thank you. Do you mind tying into what Easter was saying in terms of the need for a movement of women and girls with disabilities and maybe touch on the experiences that women and girls or disabilities in the counties where you work in, and how feasible it would be to include them all. How strategic it would be to include them in a movement building process?

Fridah: Yes, I would say that women and girls with disability, I agree with Easter that they need to be included in key decision making areas, especially during COVID-19 response. Let’s see women with disabilities in key decision making area so that they are able to talk on behalf of other women because they are the only ones who understand the challenges that women and girls with disability are facing. But currently we don’t see representation of women with disabilities in these key decision making areas at county and national level. So I totally agree with Easter

Easter: Part of it is that, one of the things we have to state is that we are tired of tokenism. The bit of tokenism is that within the spaces, in the room and you’re allowed in, usually it’s a tokenistic affair and supposedly a benevolent thing which government doing. Part of it, for me, we must resist that tokenism and ensure that that the resources, which are going into those particular spaces – the shelters, which you’re talking about, the rescue centers, which you’re talking about, must be wholistically funded and we have to be able to see them actually working. For example, one of the things we are saying is that policies are developed and it is assumed that everybody can read those policies. Yes, we can read but sometimes what you’re asking for the policy document to be done in Braille, for example, how much will it cost a county government to ensure that that policy document is in Braille. We have a Sexual and Gender Based Violence Policy within Kisumu which we are hoping to roll out to talk about these particular issues. But what we’re looking at is public participation, for you to be able to participate in those processes of even allocating resources, how many spaces are actually conducive for women and girls with disability to participate? Then you can’t put your voice in those particular spaces and that means that always that your voice is not in those particular policies.

So I’m also calling us to action as a movement as a women’s movement, how we push an agenda so that those policy frameworks are actually responsive to the different disabilities that we have. For example, whenever we go for public participation, and you’re talking about documents and allocation of budgets, even for shelters, we never even have sign language interpreters sitting in those public spaces. So it means that even if I had an issue, if I am a woman with hearing impairment I will not be able to sit in that space and be able to be heard. So much of it is that how do we then ensure that we are creating spaces as a women’s movement and demand for those things to be there consistently. That service delivery must be there consistently and that they are not supposed to be tokenistic that one day it is there the next day when you’re almost making a decision, then it is not there. So beyond the physical access, we also want the access to documents, which are then responsive to the different needs. And even with girls with disability within their own institutions how do we then respond to that? So for me, we need to question the movement and ask the movement that who have been left behind and how far behind are women and girls with disability in the women’s rights movement?

Lizzie: I think my question would be why is it so easy to forget that disability groups exists? I think some things would not fly in other sectors. So for example, you would not have a health policy or an education policy, unless this happens I’m not privy to that information, but would you have an education policy without an implementation plan and a budget attached to it?

Easter: Of course we have, we have a gender mainstreaming policy and one of the things we talked about is that gender mainstreaming policy must include issues of diversity and disability needs and it has to be budgeted for. So part of what Kenya is good at, is that we are very good at doing policy documents, tick the box, the policy document is there. How it will be rolled out? How it will be implemented? No one ever thinks about that. So part of it is that the implementation framework of this policy documents is what we also need to track. For example, the Constitution was very clear, certain things were supposed to be done within certain frameworks. So even in our policies that we are looking at, how is the policy framework supposed to be implemented. For example, if they’re supposed to be 47 shelters, that is at county level, we can have 47 shelters at county level and then at national level. We talk about shelters, but no implementation framework to say that by when are those things supposed to be done? So part of it is that then we become very comfortable with the other issues, and not considering that these issues are important. So we must then ensure that within our framework we are very strategic and very calculated in targeting to see when it’s being implemented, how much is being done, and then target at county level and national level. At national level there’s the Intergovernmental Budget and Economic Council, we can push that agenda so that they speak about it because NGC is there, the Council of Governments sits there, the Treasury also sits there. How do we push our agenda to national level? At county level, how do we target the County Budget and Economic Forums and ensure that the persons with disability who sit within those forums understand the context, the gendered context of the needs of women and girls with disability? Then we will move, then we’ll have budgets and then we must check whether those budgets are actually given or they disappear. So it’s a bit of work, but it’s doable.

Lizzie: Do you have an empowerment program within KEFEADO? And if you do, could you talk about its importance in terms of fighting against SGBV?

Easter: Yes, we have an employment program within KEFEADO where we talk about the community empowerment program. And the work is done by ensuring that at community level community members are empowered to voice their issues. We work with what we call Community Own Resource Persons who are diversified and include the women and girls with disability. So when you talk about inclusion, we also talk about the issues of inclusion of sexual minority groups within this particular place because they are the ones who are left out of them of the power structures. So the Community Development Program looks at that and we engage with community members at that level through that particular program. So we have those Community Own Resource Persons who there once trained even on issues of paralegal training, are then able to take up these issues and take issues up to court. And within the schools and community linkages program, that’s another program, that’s how we work with people in schools, and in institutions of higher learning. So within those spaces we give the talks, we speak about the issues of rights, the constitutional framework, how to be able to get your rights and then create the linkages. So the linkages with different arms of government, whether it is the Department of Health, whether we need to sit with the governor, we’ll find out how to sit with the governor at one particular place so that we can get budgets, access to assemblies and those kinds of things. So we have that community empowerment program, which even gives people knowledge on where to go. We tap into what they’re doing and then refer that to that particular place. So our programming is based on the issue of community engagement and the fulcrum of community voices being part of it. So that is how we have managed to engage with our schools who work disability within the county and also at national level. And we use different skills like using art; we have used art to also engage with children. So for example, in Kisumu, we used wire art to engage with children with visual impairment at Kibos School for the Blind. So that when they’re able to feel the messages and use messages so that children participate in those messages. For example in Bondo in Nyamonye School for the children with disability, we used painting, so that they are able to then participate in those conversations in their own way. So part of it is that how we use innovative measures, so that then they can speak but they can also learn at the same time on the challenges that people face.

And one of the challenges which we are faced which we also need to address is that sometimes the issue of not thinking about the sexual maturation of children with disability. Because of the discrimination they face there is delayed development and engagement in the school. So they are also adolescence and some of them are adults within institutions of learning we never considered this, so part of is that we also talk to the schools or how to engage them on sexual maturation so that they do not face unwarranted sexual advances and are able to protect themselves. So the language which we use is also something which we need to look at when engaging with the children in schools who face gender based violence, and also children out of school, who are discriminated against.

Lizzie: Thank you. Thank you. I’m just curious to follow up on the employment program, have you had cases where the community supports or intervenes on behalf of a woman or a girl with a disability in instances where they are not considered a credible witness violation of a sexual violation that has happened?

Easter: Part of it is that in terms of their various ways in which even you bring in a counselor because a counselor is able to see things which a normal person would not see. So how do you get counselors who are able to be able to gauge, for example, during this COVID period, a girl with intellectual disability was actually defiled in Kisumu. The reaction to the person who was thought to be the one who was defiling, when that person walked into the room based on the reaction – because when everybody else was in that room the girl was very calm – but immediately this person came into the space the girl became agitated. So part of it is that also training counselors to be able to pick up certain issues, and even within all the different spaces, how do we get counselors to be able to work with the different disabilities? Even with intellectual disabilities, how do we get them to be able to gauge what it is and use different methodologies?  That is why we have been insistent on how do we work with a gender based violence recovery centers to be better equipped, to have that trained personnel who are able to work with the different persons who walk in there. So how do we get them to be able to have counselors who can be able to work with women and girls with intellectual disabilities so that they’re able to get to express themselves? So that training is required, but there are few trained people who are able to do that and that’s a gap which we need to also tap into because then they’ll be able to work. So that means it’s a protocol with within health facilities, for example, that it is a requirement. 

Part of what we are also doing is to push the service charter to be also inclusive so that when the service charter in a health facility says that this is what they will do, we ask where’s that Washington short set of questions? Do you have issues to do with disability within your different departments? So those service charters if they are queried can then include some of these things within the health facility and community level, and then people will get to know how to engage.

Lizzie: Now, let’s talk about this specific context of COVID-19. Could you touch on, and I’ll start with you, Fridah, could you talk about what the experience of women and girls with disabilities in the counties that you work in? And what strategies COVAW is adopting to support them in this particular context?

Fridah: As COVAW we have seen an increase in the number of SGBV cases being reported to us, especially in the areas that we are working in. And some of the strategies that we are using is that we have our toll free number  where the community members can report any cases of SGBV and we share that number towards the end of the podcast. The second thing is that for us, our work is continuing, even though the government has restricted people holding meetings for more than 15 people, we are doing radio shows, radio shows is what is working for us. Like today we had a radio show in Narok County whereby we engaged Sidai FM targeting communities in the marginalized areas. So the conversation must continue even if these meetings are not happening and they must continue through this radio shows. The third thing we are using as an organization is the bulk messaging. We have a database of our beneficiaries so every once in a while we are send information, a message passing information on 

COVID-19 prevention measures and mitigation of SGBV. Because most of all of our beneficiaries, like in Kwale they were depending on tourism industry but the tourism industry have been closed and in Narok county it’s the same thing, where there still depending on the tourism industry. So we are offering food packages, the one that they have said earlier 400 families in Nairobi and other parts of Kenya where we work targeting low income areas. Thank you.

Lizzie: Thank you very much, Fridah. Easter?

Easter: Actually similar, it’s like we sat and agreed as women’s rights organizations. We are actually using similar things, we have ensured that we have the food packages and we are taking them to the sub county level. We are utilizing radio to be able to speak about these issues and ensuring that in terms of the radio we are also including women with disability to be able to be visible in that conversation. In terms of economic empowerment, because COVID has messed up people economically, so within the spaces which COVID affected there’s increased violence within the households. And it means that we need to also ensure that women with disability and able to recover for the ones in business. So we have actually put in a small package, which we call economic recovery package because women who used to work in markets, who used to do their business cannot do those businesses anymore. So we have said that in terms of this interim process we put in an economic recovery package so that they are not disabled in terms of their financial capacities. And that one will ensure that within three months, based on the status of COVID, we will still be able to ensure that they can start their recovery period and not face economic violence which they’re facing within their households. And we’re also ensuring that they are visible like we are going to be doing masks and I think that is the program you’re going to be doing with COVAW with support of HI. For the masks, the training on the development of masks is done by women with disabilities so that they can have money during this particular process. So engagement on that will then ensure that they’re able to respond.

There’s what we call the humanitarian response, Kisumu, Siaya and Homabay, we are grappling with both COVID and flood, so have also  asked that that the humanitarian response must also have disability issues included. It wasn’t included totally and it is something which we need to look. In emergency response, does it mean that that the people who with different disabilities do not have challenges? Or are they left? Like when in Ahero, who takes care of them? So part of it is that we have asked the people in humanitarian response to be very cognizant of issues to do with disability and ensure that when meetings are being done persons with disabilities are present. When the first meetings were done person with disabilities were not present and people went on as normal, that it’s okay that you don’t, you’ll be talk for. So what we raised during that particular meeting was to ensure that they were included in the next meeting. But in the next meeting, as usual, it was a male person who only talked about businesses, but he said that we are seeing issues that the household level. So part of it is that then we said that we need women with disability organizations included and now they have been included but we are still not seeing that data which informs how many of the households which are women led have actually been targeted. We have not seen the response on the data which talks about the defilement cases and the rape cases which we have seen. The emerging challenges we’re seeing in the camps is that the camps are not segregated. It means that in terms of the camps, the violation the sexual violations are also increasing within those particular camps. So those are some of the things which are emerging which we are dealing with and we are hoping that we can get protocols, quick ones, to ensure there is something on segregation, to ensure that the reporting framework during this period of COVID are also addressed. So those are some of the things which then we are doing during this period.

Lizzie: Wonderful. Gosh, you guys are doing quite a lot, quite a lot. We are working on collecting, what do you call it, support from private sector and I think since you’re already working on the ground, it might be interesting to figure out how to disburse this because they are providing supplies but not the logistics part. And of course, we cannot travel.  But I wanted to explore whether you think there are any opportunities to or any learning that we could derive from this context as a nation, but also you know, from one another?

Easter: My learning is that things can be done differently. We never thought we would be doing Zoom, we always used to travelling; it means that we can do a whole lot of different things and influence. Part of what I would like us also to do is that there are briefs which you can develop to government, both at county and national level, and also share those briefs on what needs to be done. So how do we do those briefs, particularly concerning the issues of SGBV and women and girls with disability and ensure that they reach the different places of influence and ensure that, for example, the State Department of Gender then picks it up as an issue. There are things which you can we can actually do and put pressure at policy level, which we then can review. I’ve been part of processes where everybody keeps on looking at the Ebola and other pandemics, and part of it is that even in those particular pandemics the issues of women and girls with disability were still very muted. So we have an opportunity to ensure that we can raise our voices and it’s a low hanging fruit. So for me, that’s something we can start doing while we push for those food baskets at community level, sanitary towels, those kinds of things.

Lizzie: Thank you Easter. Fridah?

Fridah: For me. Yes, there is a lot of learning especially on use of ICT. As a country, we should have a national GBV help line that is very well sourced to operate 24 hours that offer psychosocial support and care as soon as referral for survivors. In that it’s online based and anyone from anywhere can call without incurring any cost. The second thing is that we are learning is to need alternative safe houses and shelters for survivors. As Easter was saying earlier, we have good policies and we need the government to actualize them. One thing that we really need the government actualize during this COVID-19 period is that we need alternative safe houses and shelters for survivors of GBV. And the last thing that I’m learning individually is that self-care during COVID-19 is very important; take care of your mental health because we are getting a lot of news from here, there. So take care of your mental health, go for a walk, and listen to a podcast like this one. Check out how your beneficiaries are doing and lend a listening ear. I think we have a lot of learning from COVID-19

Lizzie: Thank you.  I especially like the mental health one and listening to a podcast like this, very useful learning. Now in closing, you’ve talked about some key messaging in the entire discussion, but specifically what would be some key messages and strategies that we could recommend to the government around SGBV, specific to this current pandemic, but also post COVID?

Fridah: If I should go fast, there is an advisory note that COVAW and other women led organization drafted early last week and is actually available on our website. We’re calling on the government to respond to GBV issue during COVID-19. And one thing I would say is the government needs to increase provision of financial support to vulnerable households to ease economic threats, especially to vulnerable female headed households. Yes, I know they are doing quite a lot, but we need to see more, more in terms of financial support to these vulnerable households. The second thing is that the court should prioritize handling domestic violence cases as urgent cases. Remember in early April the Chief the Chief Justice noted that there was an increase in GBV cases amounting to about 35% of all cases that are being reported in court. So there is need for court to handle domestic violence cases as urgent cases.

Lizzie: Thank you. Fridah, Easter, do you have any thoughts?

Easter: I think we were also part of that drafting which was done by CREAW, we were part of that drafting, and it had a lot of very key issues which then need to be railed around. And one of the things which came out very clearly was the issue of the marginalization and the invisibility of issues to do with disability. So it would also be great if then, we have also a face. We talk about “nothing for us without us”, where is the face of women with disability in these particular spaces? There were also certain things which are being drafted by feminist organizations across the world, the issues of disability also came in there. So I think that one of the things which you can do is that let us use online platforms, and more of this, to be able to ensure that those documents can be shared within the disability movement, so that we localize it in spaces where then the local persons can be able to speak about them, and then put to task the duty bearers to be able to act on their asks. So if we are able to do this within the next few weeks, then I think we’ll be able to then ensure that within each county and at national level, the asks then becomes similar and it becomes a pressure point – when there’s enough pressure then people can’t ignore.

Lizzie: And I need to apologize, I should have checked in with you in the beginning. How are you both? How are you guys doing it in this situation? Both of you, from a mental health standpoint.

Easter: We do self care part of it. And actually one of the things is that, for example, Urgent Action Fund is actually doing activities which then include different organizations to be able to just to dance or listen to music or to clap or do something. So that is something which is done, like today, actually immediately after this, you choose music, do whatever you want, but at least within a collective, so that you are also able to share your experiences. So part of it is that even as a collective of women, what are we speaking about? How are we supporting one another? How do we check in on one another, so that then we don’t go…it’s a very challenging space at this particular moment because people are not used to it and it’s something which we need to tap into. And I think we can do things, even if it’s a weekly thing or if weekly is too much, then every two weeks, something can be done. So Urgent Action Fund is doing something great, so you listen to music and just chill with your people, do a chill spot and you can do you can detox kiasi.

Lizzie: That’s nice. Fridah?

Frida: For me self-care is very important. Don’t be confined in the house. And I mean don’t go out, don’t go out, but it’s good to take a nature walk within your home area. Yes, and listen to good things.

Lizzie: I just want to thank you both for joining us. If there are any last thoughts, any parting words that you would like to share now would be the time before we close. I’ll start with you, Easter.

Easter:  Self Care is critical, and we will survive COVID-19 all of us, together we can. And take care of yourselves.

Lizzie: Thank you. Fridah?

Fridah: Allow me to share our toll free number just in case.

Lizzie:  Yes, of course. Yes.

Fridah:  So we have a toll free number that we recently launched and its operating 24/7. And the toll free number is 0800 720553.  Let me repeat 0800720553. Thank you for having us.

(Music) Outro

We’ve come to the end of our session for today and we’re so grateful for your participation. Let’s remember to continue the conversation on our social media platforms if you would like to join the conversation as a guest speaker or discussant please get in touch by sending an email to remember to like and share our content on Twitter @PazaPodcast. For more content on This-Ability’s work and projects please follow This-Ability on Twitter and Instagram @this_ability_ke and on Facebook Speak soon and stay safe.

                                                        THE END

Paza-Episode 3

Unpaid care work, Guardianship and Legal Capacity: Exploring the experience of women with disabilities within the global pandemic

Recorded April 21st, 2020

Full Audio-Text Transcription

(Music) Intro

Hello everybody thank you so much for joining our conversation in PAZA. PAZA a Swahili word meaning to amplify is an initiative by This-Ability Trust seeks to document and create visibility for the experiences of women with disabilities globally. We look forward to hearing from you so remember to show your support and feedback on your social media platforms to continue this conversation please follow our Twitter page @PazaPodcast

For more content on This-Ability’s work and projects please follow This-Ability on Twitter and Instagram @this_ability_ke and on Facebook

Now let’s get into today’s topic of discussion 

Lizzie: Thank you so much for joining us this afternoon, and today we wanted to discuss the role of unpaid care, work, guardianship and legal capacity, particularly exploring the experience of women with disabilities within the global pandemic. And we are very pleased that we are able to be joined by amazing speakers who are amazing champions for children with disabilities, and I will let them introduce themselves. So can we start with you, Silvia, could you introduce yourself please and the work that you do?

Sylvia: Good afternoon, everyone. My name is Silvia Moraa Mochabo. I am the founder and the speaker for special needs persons. I’m a graphic designer by profession, a mother of three boys, two of whom are on the autism spectrum. And raising the children is exactly what led me to do what I do in terms of advocacy.

Lizzie: Great, thank you very much, Caroline, would you like to go next?

Caroline:  Good Afternoon. My name is Carolyn Makana. I’m a mother of three boys, my eldest son, Ethan being on the autism spectrum. I’m a lawyer by profession, and my husband and I also run a school here in Nairobi for special needs kids. And I’m pleased to join you this afternoon.

Lizzie: Thank you very much. We have the team from This-Ability joining us as discussants Maria Rosa, would you like to introduce yourself, please?

Maria Rosa: Thank you, Lizzie. Good afternoon, everybody. I’m Maria Rosa. I’m from Ecuador and I’m the Project Manager in This Ability.

Lizzie: Thank you, Millicent.

Millicent: Good afternoon everyone. My name is Millicent Ojwang, Operations and Admin manager This Ability.

Lizzie: And Clarence.

Clarence: Hi, everyone. My name is Clarence Okune Media Officer, This Ability Trust

Lizzie: My name is Lizzie Kiama. And I am the Managing Trustee at This Ability Trust, and our work really is to advance the rights and inclusion of women with disabilities in Kenya. So to get into it, Sylvia, you run an organization. Andy Speaks if I’m not wrong, yes.

Could you tell us about what led you to start the organization, some inspiration behind it, and you’ve alluded to it, but please give us some more detail.

Sylvia: Sorry for that, so I am a single parent just to add on to that. And starting off this journey was a bit confusing at first, the minute you get the diagnosis, and you do not know where to start, who to turn to where this came from what this is, because most of the time it is progressive. In my side of the story, first we had Compulsive Disorder before we discovered that my son, my, my second child, who’s called Andrew, was on the autism spectrum. And by the time I was being given this news already pregnant, it was actually almost the same day with my last born who after his birth, Also we saw that his milestones were delayed, although he’s one not as severe my son spoke at five, and the journey by the time I could get a grip and get evaluation, and actually get to see the right doctors in the sector, the journey of actually getting him to school because you would be accepted and admitted into a school and after a while, you see there is no progress, then that comes at the demand from the schools. Then when you see people parent teacher conferences and you’re being looked at like they cannot handle the child anymore. They don’t understand what’s going on. So let’s just say the journey was a bit frustrating, coupled with trying to get through a divorce at the same time. was not one of the easiest things. So I tried to find my way through that forest because that’s what it felt like you’re just put in the beginning of the forest and you’re told, let’s meet on the other side. There is no mark, there is no thought just figure your way out.

Sylvia: So when I said in the tried to figure out how the journey had been, I wonder how many of the parents are going through similar situation? How is it across the country because there was also the stigma that comes with it in the social setting, and also within the families. And we did within the school setup also because by now the children could see that because of the development we’re also getting frustrated. And apart from that, I’m a prayerful person. So I kept receiving this message of Proverbs 31, 8-9, which was speak on behalf of those who cannot speak for themselves and fight for their justice.

For me that was it back in 2018, I knew deep inside, I used to do social on social media advocacy and just talk about what autism is, and not many people actually believed that my son was autistic because he looks like a normal child. And that’s how slowly but surely got to connect with other parents and by the end of the 2018, and my sister also has a child who has Down syndrome. And I spent some time with her. And I finally decided, Okay, when I was I didn’t need to be with the Daily newspaper. And from there the with this story came out, you know, when you take a retrospect and look at the story from the outside, that’s when I was now everything made sense about the conviction of doing something, the Bible, but the experience that was going on around me, and that’s when I decided okay, so because the title of the article that was done in the daily nation, that was the last day of December 2018 was my son finding calls me mom. That’s how the name and Andy speaks came about. So we want to be the champions on the ground and the voice for persons with developmental disabilities.

So it’s not only just autism, but the full neurodevelopment disorder group two, just looking at the rules and regulations that are there, there is a lot of lack of inclusion. And at the same time, look at the education systems, they’re not sufficient schools. When we look at the health system, it was quite a daunting task to actually find a doctor who knows what it is that you need. So you sent from one place to another before we could find out what was the best intervention for him. And so to see how best this could be corrected, I decided I will take up the mantle and to the Andy speaks for special needs persons Africa. We started the work for advocacy so that parents can come out We can enter stigma because we are better. I’m in bigger numbers and indigent government and other bodies that are responsible for looking out and setting policies for children so that we are also included in all the decision making that is going on at the moment. So that’s in summary what this is all about and how it came about.

Lizzie: Wow. Thank you. Thank you so much. That was amazing. Thank you very much. Caroline Could you tell us about your experience, you know, both from a professional and personal standpoint.

Caroline:  I relocated back to Kenya. I lived in the UK in around 2008. At the time, my youngest brother was very ill in the UK. And I had just had my son, Ethan my first son. And after about 18 months in after he was born, I noticed that there was a bit of a of a difference with him in terms of his receptive behavior, you know, playing with other children, there was something that was different.

But because I was so overwhelmed with my youngest brother being ill at the moment at that time, I sort of put it behind my mind and said, Look, when I get to Nairobi, I’ll feel what’s wrong. So when we came back to Nairobi, I then started sort of researching to find out what was wrong with my son so he went to see our pediatrician and he said, Look, your son seems to be on the autism spectrum. And I was like, What is that? So then we were referred to the gate roads in Muthaiga, and we went there. They run a program called a Special Educational Program, which involves different professionals, occupational therapy, speech therapy, pedestrian, and they sort of sit with you in a room and they assess your child, and, you know, try to figure out what might be wrong with the progression of the child.

So after a meeting, I was told that Ethan is autistic. And I think that was the hardest, probably one of the hardest days of my life. And, you know, the first question you ask is, you know, what do we do about it? Is there any medications? Is there any treatment for it, and then you’re told there’s no treatment. So then that that’s how the journey began. And, you know, sort of getting back and trying to settle down trying to figure out life. And I was a single mother at the time. I was lucky enough to get a, a job locally in a bank and you know, getting child care the time was also difficult because your child is nonverbal. And just getting people who understand how that how that works. It’s very difficult. You go to work, you come home, the child is very unsettled. But eventually, by God’s grace, I got a very good nanny. And then we got a really good routine going. So I was raised. At that moment, I was settled, and then subsequently joined the judiciary, and I had to travel a lot, but thankfully, I had a really good nanny at home and a really good support system.

My parents and my siblings are very supportive. So that allowed me to work and focus on on on providing with ease. And as the years went by, you know, he was quite stable. He was at a school in Nairobi, and he had settled in quite well. So we had a good routine going on. And I felt like he thrived from that. And just that stability and the structures really helped and then also put him on a good diet that had been suggested for him. So hyperactivity reduced, and so that was good. So subsequently, I met my husband about four years ago. And the funny thing is that he had actually volunteered and worked in the UK at a school for autism. And as God will have it, he also had a dream of starting a school and so he did I. And so it happened that after Ethan had been to a few schools, and we just felt so So we’re not getting the support that we required for him, we decided we’ll start out on it just started very small in terms of like a homeschooling environment and then other parents joined as well. So down the line, it’s been very, very fulfilling to see our children coming into our space and just being able to benefit from whatever my husband learned and what he knows about autism and other children as well have joined with other conditions, cerebral palsy Down syndrome, and it’s been very fulfilling to be able to do that and also, you know, sort of have my career going on at the same time. And we also have two younger boys as well. And it’s, it’s been a it’s been, I think, I think finding out that my son was autistic was the thing that turned my life round. Think he made me the best version of me I’m pretty lucky and privileged to have him as my eldest son. And I think I think that’s, that’s about it in terms of the journey so far.

Lizzie: Great. Thank you. Did you have any prior experience with disabilities before your children? Sylvia?

Sylvia: Personally, no, never. Not even like in where we were leaving. Before growing up, I knew I’ve only seen one person, but you know, the African culture most of the people just random as that’s a mad person and stuff like that. So literal respect is when you’re like, actually this person could have been that person could have been, you know, to sit here and part of the strife that came in the family when there is a lot of the finger pointing of escape from your family. This came from your family, you know, because it’s usually reaction after the diagnosis.

Lizzie:  Right and yourself Carolyn.

Caroline: When I lived in the UK, I did. We I lived in a very closeknit neighborhood. And I think while I was I was raising my son, a couple of people at our church did point out that they thought maybe he was on the autism spectrum, but I didn’t take In sort of serious, thought to that, being that I was already, you know, going through the issue with my brother, but thankfully where I lived, it was a very open thing. You’d see people on their wheelchairs and my brother was also in a wheelchair because he had multiple sclerosis. And when he went into a care home, I also got to interact with other people with disabilities. So I did have some personal experience on that level. Yeah.

Lizzie: Okay, thank you. Um, just a follow up to you mentioned the school. Could you tell us the name of the school and, and well

Caroline: The school is called Haven cottage and we are located in Kileleshwa

Lizzie: Yeah, okay. Okay. Do you have any non disabled children in the school?

Caroline: No, at the moment we’re doing purely special needs.

Lizzie: Do you think it’s an environment that you would bring in non disabled children? Do you think it’s something that would probably add value to them as well.

Caroline: We’ve had, we’ve had vocational training. And we also have a holiday training program.

And we’ve partnered with a friend of ours in ICT and she’s a family ICT consultant. And we have to after  the normal time is over, we usually have a two week vocational training program, where we integrate our children with other children. And, and, and they and they get on quite well and it’s been very, very, very great to see other children learn about children and special needs and learning to be more inclusive. Learning to be more patient. Just seeing children grow up, you know, having that mental capacity to be inclusive, this is very special. And I think when we start now, it will become, the stigma will go out the window. And I think as we’ve been raising our children with really, you know, seen a little stigma and countered a little bit. But when you’re more inclusive and more open about your own story about your own journey, I think people are more understanding and more inclusive. And not talking about it is really very counterproductive, I think. So we’re very open and we talk about it a lot.

Lizzie: Great, thank you. So in this situation where we are social distancing and isolating. I’m wondering what your experience has been in terms of the burden of unpaid care work some of the things that you do for your family As women as mothers, could we have a conversation about that? And if you think it has increased that burden, you know, in this difficult  times has it reduced having? Do you have support at home, you know, is your partner at home? Do you have extra help from family and things like that? So I’m just wondering, from your perspective, is that something that you feel comfortable sharing. What’s going on?

Sylvia: It’s everything has gone by tenfold in terms of, you know, you had routines before because children on the autism spectrum thrive on routine. And right now, okay, it’s easier now because it’s been a month for our family right now. The fact that we are all now bundled up living in an apartment setting makes it even harder because the space we’re playing is not there like they usually go out to play over the weekends. So they’re not seeing their regular weekday routine. They’re not seeing their Saturday routine. They’re not seeing their Sunday routine. So it was like every their world came to a standstill.  I’ve seen regression in my son regression in terms of now there’s no therapy because he gets speech therapy and occupational therapy from school, which is subsidized. So you can’t even think of calling in the therapist to the to the home because of course the risk of exposure. Personally I was so panicked because when this means broke out. I just had a meeting where we were at an award ceremony with very many people from everywhere, and had a personal contact with with an in- law who had come from London.

So that’s mental debilitation on fear that oh my god, maybe I carried it. I picked it from somewhere. So it took two weeks first of all to settle mentally. I was so scared that I personally started seeing symptoms and my son was recovering from a flu. So on top of the flu, the fear of women going into a hospital was also heightened. I was like, No, I’ll just this medication review this before. And because you’re trying to keep saying teenager who’s come and home and he’s not following a timetable, because he thinks it’s totally they totally the time and you’re like you need to continue with your studies. Business was interrupted majorly because I’m self employed. We’re the first ones who got to hit where we have just organized a medical conference special children 6500 special kids, which is supposed to happen on Saturday, this is Friday with everything is ready . Oh, then you’re told it can’t happen. So by the time you can consolidate all these cancel with suppliers cancel with people’s schools, children, busses. So let’s just say my life was upside down for a bit. Then now you start adopting and you have to be a teacher, you have to be the doctor. I still have to be the mother and all this the point because now all of a sudden there is no income stream because so I’ve tried to find solace currently by I use my graphic design skills to communicate and push for the advocacy and awareness to doing posters and caricature. So that is now where I found my Sanity  and stability because I’m locked up. The Kids Are All I have a child with ADHD major who settling down of the window we’ve had so much broken items in the house that you can’t shout anymore.

So you find you’re using so much energy trying to control these children because the level of meltdowns are intense. Andrew wakes up screaming from morning to evening, he’s nonverbal. I can figure out what he wants you to try to give him everything. And don’t know if he’s sick because he can’t express his emotions. He only has three words, which will be more of items like I want this or he will just give you one more to figure out the rest of it. And let’s just see if I haven’t gone crazy so far. God is great. And is trying to lead right now up to try to come up with a different routine. Yesterday I was being a teacher and a therapist, today am trying to sit in the office. So you see when you have routine you have time for you For self care, during the regularize your mental state. And then for a front liner like myself, I still have other parents who are looking up to me for support or. So you have a lot of burdens to carry, but like to say we’re women are expected to be able to sail through everything.

Just trying to restructure and see what we have to do and see was an extremely good day, no drama from morning to evening. This is one month later. So today’s is Me time, not really me time is my day at the office. So that way I’m able to balance myself. So when I’m here, I’m able to deal with other parents and also try and cause working on proposal to how to support and be a support system to them. So we’re working on that. Remove this coat and become mommy.

Lizzie: Wow. Thank you. Thank you so much for sharing. I don’t know how we can lift you up as well because you definitely. You definitely need lifting. I will lift you up in prayer.

Caroline: That’s a lot to bear

Lizzie: Caroline, would you like to share?

Caroline I can totally relate with Sylvia. Keeping the kids keeping them structured throughout The day every day in the same environment is very monotonous. And you also feel very anxious. So you can imagine how they feel like our eldest son, Ethan, I find he thrives with monotony, it’s very interesting. He, he’s very secluded, he doesn’t mind being secluded to do his own thing, as long as you structure him and give him activities throughout the day. He’s very okay with that. We’re very lucky that we live also in the same place where the school is, so we have a lot of space for the kids to play on the playground is, is sufficient. And we have a garden and we have dogs. So I feel for them. I when I look at them, I don’t feel like they’re anxious or they feel like anything is missing.

Although a couple of days ago, they did get into the car and said, You know, we’re going and they wanted to leave and they wanted to go and you know, they were screaming the heads of the toddlers especially, but Even even the eldest seems to be quite settled. Because we have all these materials, he’s doing a bit of music, then at the moment you’ll go and play then you’ll do a bit of gardening then before you know it, the day is over. And and and we just we just rolling with the punches, taking it a day at a time and, and just enjoying our family time together with their dad myself. And thankfully, we have an amazing nanny for the toddlers and a manly for Ethan. So there’s a lot of support and everybody sort of able to take time out for themselves and just do what they need to do. And I do feel for Silvia, I wish she could bring the boys over and they can all play. But now with the social distancing, it’s really difficult because everyone is sort of just keeping to their own space to reduce an infection. So, so far, I feel like we’ve managed quite well.

Lizzie: So the next the next question was about how the children are managing their solution, but you’ve kind of talked about it in your in your last response. But I’m wondering, I’m wondering, in this current situation, are there any opportunities? We’ve talked about challenges quite a bit? Do you think there are any opportunities and could you share some tips with mothers or guardians that are also going to you know, similar, a similar situation.

Sylvia: Sometimes, you know, you can try to see through the smoke but the smoke is so thick that as much as you try, you’re just waving your hand and you can only see like 10 centimeters from where you are, as there is the good side is because you have spent time with your children, you realize things you didn’t know about them and you get to see Like new developments that maybe have missed, you know, your attention because of the usual busybody we are. So that’s one thing I’m grateful for. And trying to be a teacher as much as it’s not my cup of tea because of my level of patience. And for sure, because it can’t be enough. I can only teach adults children is not my cup of coffee.

But the other way I say we look into smoke is like we had tried to develop a routine whereby after two days, I’d put the kids in the car because they’d start saying we go to the car we go swimming. We go around, you realize okay, they’ve noticed that and and read things out loud, like That’s the hospital This is our routes to doing this. We make small plates together. But then you see now the government also throws in the spanner. We right now we have limitations of how many people can be in a car, you know, so I think in my case, yes, my nanny can’t leave any of the children behind. I can’t go on my own. So I have to come with my eldest because he’s now like my support system at the moment when it comes to caring for them. So when they say that, you see without considering us it’s quite a blow. So what are the other thing that I tried to do is take them to I spoke to their school because there are no people there. So I take them there with the bicycle and then they at least they have the place structures they go and drum there. So there you go. You just, you know, just you as a family, and you’re walking with your hand sanitizer like to liberate the goddess Don’t touch they will not attach. So that was just a dream. So you have to just weigh your wrists and trying to determine you can do but then we have to do we have close and now I’m trying to leave with adopt to the new environment and the challenges and embrace them. And the good thing that I can say that has come out of it is also now I think my neighbors are not shouting at me anymore. I am not getting mode of keeping it down, especially after the feature we did on TV the other day, because that means our awareness has gotten out there people are trying to see and they can understand what it is we are going through. So I’m just hoping that it will not end no it will end now. And even after when by forgive arises people will remember that the children as to who they are, and they still need that love and understand. Yeah,

Lizzie: Yeah. Amazing. Thank you. Caroline, do you have any tips, any opportunities that you’ve seen?

Caroline: I think the change has been hard for us who we have to admit, you know, sort of being cooped up in the house, and only maybe stepping out to do grocery shopping or essential, you know, purchasing of whatever is needed. But what we did as a family is that we made small adjustments for the children’s schedules, so they don’t feel overwhelmed and then you know, try and do fun things together. If we’re baking with big together, they’ll make a mess, but then we get to spend quality time together. And then, you know, just going on YouTube to see what fun things we can do. We have extra toilet, toilet roll, you know, the toilet roll holder, the brown bits in the middle. We use that to do a bit of painting and a bit have creative stuff. So the kids have really enjoyed the quality time and just us being home a lot. Although for us, it feels like okay, our routine has been changed, but I think the children are thriving a lot from it. And I’m also enjoying the time and the quality family time. And I think the children are more settled when they see you at home, and they’re getting all that lots of TLC from you, I think I find that they enjoying it a lot. So although we feel overwhelmed in terms of you know, being uncertain about tomorrow, I think this is a faith walk, we just have to roll the punches, take it a day at a time and just do the best we can.

And you know, take all necessary precautions like Sylvia said, walking around with that sanitizer and sanitizing every two minutes wiping down the house, you know, with Jik and cleaning up all the time. I think that that’s a bit of the anxiety that we need to manage The best way we can and, and probably also, you know, minimizing on social media, what you know what message is out there, what news is out there and just trying to see what making you be anxious at the moment and just trying to minimize, and then, you know, what you’re striving for what makes you happy and sort of increasing more on that as well. Yeah. And also, what we’ve been doing is, you know, lots of phone calls, lots of video chats to regularly Connect, say with the grandparents, other family members and other close friends as well. So that’s been very helpful for us.

Lizzie: Thank you, um, has either of you, just to follow up on the tips that you’re sharing has either of you seen has had access to targeted messaging that caters to your children during this during this period,

Sylvia: I think like Gemini so we like especially for apps and stuff like that. Or this could be you getting a lot of like speech therapy programs being being thrown your way in terms of I know I got from Gemini I got from your speech bubbles or something like that. But the thing is you get so excited because you’re seeing an outlet like hey, something’s I can do something they can do that who built them, you know, because now, electronics have become more like a comfort. So you have any more screen time as much as they think we should be reducing. Some of us that’s the only time you will be able to take arrest for so. That’s what they want and they learn different minor, heavily visual and sing along is the thing but then controlling all the time. So with this one as much as you want to engage with them. Once you start filling in information to get somewhere, then there is a big price tag on it. Of course, finances are tight. Okay? on trade everyone but for us, in my particular family setup, right? Right now we cannot as much as it is important. It feels more like a luxury to just get to write to ensure that they have everything else that they need, what messages are coming, and maybe maybe one of the other things on the tips that we see is that they’ve seen a long games trying to match and now for the kids to be singing  and try to use the online other free online tools for parents to use to get them engaged because anything visual actually gets a

Lizzie: Great thank you Caroline you want to add on that?

Caroline: I find that the more screen time the kids have, the more like our toddlers, they get very anxious and they want to constantly be on the screen on on the iPad on the phone. So for us with just when the weather’s bad, then we try and do a lot more activities like, you know, something, they can do practical things in the house, but we really minimizing on the screen time. For us, we find that it’s just not been very good for them. It makes them a lot more anxious, because then when we introduce other other activities, they’d rather be, you know, sort of on the screen, as opposed to doing other practical activities. So we’ve just been focusing more on the practical activities for now. I think that’s for them as been created a lot more stability and kids are different. And what works for us may not work for other people, but we find that that works for us.

Lizzie: Are there any initiatives that are targeting families with children with disabilities or you know, families of persons with disabilities? I’m curious I am I’m not sure what is available out there.

Caroline: I think if you look at the international media cause it depends on where you what which platform you’re on. I’m on like on social media that you will find we have advisories on how to handle and how to try and deal with the children at this time. But locally, first of all, the, I think we’ve been segregated for lack of a better word as the neuron diverse community for a very long time. If you look that yes, we’ll talk about the blind like that, but our children are not being considered. I see, only the past few days after the President announced about funds is when you’re seeing a lot of discussion around disability. But then if you look at it till from there is this a survey that I’ve been doing for the past one week, and the question that most parents are feeling left out is even as this discussion is coming, there is so many people suffering. You know, we have parents who lost so Because out of the many groups that is all I’m saying is this frustration frustration. And we actually have a platform where we’ve seen nothing to do with COVID to be posted here is just support of each other because it’s also becoming so much and it’s so negative you already have enough for in my house we only watch like the briefing to know where the numbers are. And we get back to like our time taking off this one likes this this  

Lizzie: Thank you, Carolyn.

Caroline: I haven’t seen much locally. In terms of support from the government, for families, with children with disabilities, or families and grownups with disabilities as well, people living with disabilities, and I have been wondering, you say, see, for example, my son did get the COVID. And, you know, he was required to be admitted, you know, how is the structure on the ground for, for children with disabilities? How are they supporting families? Are you allowed to go and stay with each other? Of course, you’d have to, I mean, there’s no way around that because they can’t even manage our kids without our help. So all those things do go on behind our minds. And we worry we do worry. Because, you know, apart from dealing with a normal day to day things that we have this particularly a thing that we overburdened with on a daily basis, you know, And I think that mothers and fathers who are taking care of children with intellectual disabilities are really at risk of increased mental health issues because you know, we don’t have an outlet, no one’s talking about it, no one’s following up for you. We have our support systems, maybe with the family, but a lot of people are burdened by themselves and keeping information to themselves and just feeling a bit overwhelmed. Because, you know, we also feel like, you know, that many places and really, sort of supporting us like they should. And I found in the UK when I lift their parents, they have a proper social welfare system going on. And they really do care about their people and they care about their disabled more than anything. And and they do put proper structures in place and they support you financially. materially and they’re they’re not here, you might be unemployed and you have to support this child and you have to be there and their care like you said unpaid care work is just, it’s it’s like nothing like you’ve ever experienced, especially when you have a child with a disability, it’s it’s really challenging, it’s very hard. And the services, the services are just aren’t enough and, and, you know, we really, really just need to stand up and come together and, and just really push for this agenda. But you know, as it is, I feel like the government is already struggling to manage the situation and you know, they’re not really sort of thinking about the nitty gritties of people with disabilities and how that work. I think when they’re faced with that situation, then they deal with it, but in terms of, you know, I plan for us I’m not sure they have one really

Lizzie: The levels of preparedness within our governments are, you know, it’s very clear that we we are not prepared for crisis situations otherwise, for me it I think it would have made sense to ensure that the most vulnerable in the society is taken care of, you know, we start with that as a default setting and then build on top of that

How do you as mothers, with children on the spectrum, how do you support them to ensure their autonomy and that they’re able to make, you know, decisions?

Caroline: Children with special needs have different capabilities regarding their own decision making. But I feel like they can make choices with support. And that’s really what we’ve been trying to do with our mission and the children at the school. So we have quite a few older boys at our school and what we’ve been doing is just trying to get them to learn life skills, because I think that will be the basis of how they will be integrated into our society. Because at the moment, there is actually no plan for our children in terms of how they will go out there and how they will live their lives. But if they’re able to support themselves and learn a skill that we’ll be able to help them in, in regards to, you know, being able to, you know, be structured and support themselves.

I think that will be, very important and key, and we need to start doing that now. I have a friend who lives in the Netherlands and we talk a lot about autism. And, you know, he tells me that they have industries there, that and companies that only hire people on the autism spectrum, for example, and they have a proper social welfare system, proper infrastructure that works it, you know, impeccably if the bus is meant to be at 10 past 11. It’s here 10 past 11 and our children thrive on routine, and if we had such a structure, it would work but you know, in the absence of such a structure, we just, we’re just managing the best way We can and the reality is that we will have to be our children’s support for a very long time. But if we can teach them to be more self sufficient and to be able to do things for themselves, then you know, they will begin to know that they can do things for themselves and be able and are capable of doing a lot more than, you know, people would imagine that they can do but with encouragement and support, and that constant, you know, pushing and, and, and encouragement and just routines doing the same things over and over again, they will be able to do things for themselves. So, you know, one day they might even have families who knows and they will be running their own businesses, I think they could be very good entrepreneurs as opposed to being in employment. And I think that’s just how we see it. And that’s really what we’re doing in terms of being able to support our children in decision making for the for themselves.

Lizzie: Thank you. Thank you, Caroline Silvia, do you have any thoughts?

Sylvia: Um, for me at the moment considering the stage I’m at with my kids, that is we add the pre, though it’s now that they’re grasping the concept of understanding there is yes, there is no, that I I have a voice also. So as much as we are trying to give them the freedom to know that yes, they have a voice. We’re also trying to teach responsibility at the same time. So as you as they’re trying to communicate what they want, give them options with repercussions that you to get them to understand like at this time, I want to play and I want to go outside so you try with the simplest way to explain to them that you can’t go out because XYZ and try and relate it to something they’re familiar with. So this is just the beginning of molding. Then for decision making skills so that they’re able to make the wise choices. My youngest is easier because his truck is starting to communicate faster since we put him in a special school. So he understands the decision. So you can give him options like either this or that. And he’s, he’s able to articulate what it is that he wants. So mostly the challenge will be with Andrew. But when it comes to the future, I am I am saying that let me work so hard to see an influence policy and structure so that it is so inclusive that if anything happens, God forbid that I’m not here, at least I can rest in peace, knowing that there are structures that will sort of take care of the children, because not everyone will embrace him for who he is. Not everyone will understand that he would be slower to process like questions and  the pressure that’s around. So if we do it now, and it will mold the future generations to be more Understanding and to embrace difference, then that means the future will be brighter for them. And so we pray that at least there will be some change in the community.

Lizzie: Great, thank you and to piggyback on the policy advocacy, what would be, you know, some of the best ways and some key messages that should be disseminated now, and possibly in building this critical mass that we’re talking about, you know, the strength in numbers.

What can we do in our various spaces to amplify the situation of children with disabilities in this particular context? Sylvia

Sylvia: The moment I think as, as we’re trying to speak up, if we could get back up in terms of let’s see what we exposed to the media platform we’re championing so that at least the media is more inclusive trying to explain what Corona virus is in there, and that you could have people who have access to media to amplify and give, give a voice because this is sometimes when you’re a lone ranger and you’re trying to shout, you can shout or you can, but not many people will hear you. Of course, they’re more heavyweight than more experienced people in the field. It’s a time where we have to come together as one, right? Because if we continue with the divisions that already are even in the disability space, from personal experience, we will expand for unity. It’s time to advocate more and harder, be in the spotlight be known. You know, despite the thing, always in the background and hiding our children due to stigma. There’s more time for playing or I need to be private and stuff, because we’ve seen parents committing suicide. We’ve seen a mother die and leave a nonverbal child and the body discovered 3 days later, we’ve seen going on, I have parent calls and say that they’re about to be evicted. They don’t know what to do. Another one got laid off. They’re already struggling and they’re wondering, what else do they do? From here because you have a sick child, you don’t know where your next income is going to come from and just been laid off, your contract has been terminated. So all these stories need to be given a platform to be voice so that at least government that there are people who need their support and everyone else who’s around you needs to know that there is someone who needs help, and also just being neighbors. If you’ve ever realized that Oh, that child looks like they are different. Then check up on them even if you know you maintain social distance go with the mask but just knock on that door. Because the level of loneliness right now is soaring up top and people don’t know, Yeah. One of the parents So yes, we are the voice on the ground. But then I personally don’t have the capacity to carry someone else’s. But I have my plate right now. So where do they go? You try to do the best you can. But you see the same government that’s supposed to be helping that is still referring this spirit for us to continue working with them. So who the one who is standing for you? When self is my mandate? And so, yeah, that’s that those are some of the challenges, right, like at this point, what needs the government needs to the structures, we can’t rely on the past. We need to readjust the structures that are there now to ensure we get everyone, everyone meaning that inclusion should be totally inclusion. It’s always been about physical disability. It’s about time that the neuron diverse communities also looked into because at this time, we are the ones who are suffering it last

Lizzie: Thank you. Thank you very much Caroline.

Caroline: Um, I don’t know if I can add a lot more to what Sylvia said really. But I think what we need to do for each other is just to be our brothers keepers and check up on people you know might be struggling right now, or going through difficult times because we are going through that. And you know, send a message, quick phone call. If you have something extra you can send to somebody do that. Because we it’s such an uncertain time so uncertain for all of us. Because also kids are not going to school. Some parents are not working. Parents who are running businesses are struggling to make ends meet. employed people have no job security right now. It’s just really difficult for everybody. So, as a nation, we just need to stick together and be more patient with each other be more inclusive, and, you know, share information that will be beneficial for, for example, parents on, you know, taking care of children with disabilities. And just see where you know where opportunities are and just being able to share that information with other people as well on how they can benefit as well. So for now, you know, just taking it a day at time and just hoping for the best and just hoping we get past this in one piece, and we’ll see at the end of the tool, that’s my take.

Lizzie: Thank you so much, ladies. I really enjoyed this conversation.

(Music) Outro

We’ve come to the end of our session for today and we’re so grateful for your participation. Let’s remember to continue the conversation on our social media platforms. If you would like to join the conversation as a guest speaker or discussant, please get in touch by sending an email to

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Speak soon and stay safe.

The End

Paza-Episode 2

Feminism, Health and Women with disabilities: Exploring the experience of women with disability in the global pandemic”

Recorded April 2nd, 2020

Full Audio- Text Transcription

(Music) Intro

Hello everybody, thank you so much for joining our conversation in Paza.

Paza, a Swahili word meaning to amplify is an initiative by This Ability Trust seeks to document and create visibility for the experiences of women with disabilities globally.

We look forward to hearing from you so remember to show your support and feedback on your social media platforms to continue this conversation please follow our Twitter page @Paza Podcast

For more content on This Ability is work and projects please follow This Ability on Twitter and Instagram @this_ability_ ke and on Face book

Now let’s get into today’s topic of discussion 

Lizzie: Thank you very much for joining our platform this afternoon. The compensation for this afternoon’s podcast is feminism, women with disabilities and health and mainly exploring the experiences of women with disabilities, particularly in light of this global pandemic. And with us this afternoon, we’re very pleased to have amazing, amazing strong women with disabilities. And I would like them to begin with some introduction. So Abby, do you mind introducing yourself

Abby: My name is Abby. I’m born and bred in Kenya. I’ve started a project called walking autism, which is to raise awareness of autism across Kenya and eventually, hopefully the continent. And thank you very much for inviting me to this podcast. I look forward to contributing.

Lizzie: Thank you very much, Abby. Marie Njeri, do you mind introducing yourself? Sure.

Maria Njeri: Thank you for having me. Again my name is Maria Njeri. I live with Cerebral Palsy and I manage my own awareness and advocacy organization known as Njeri Maria Foundation, we focus on children and people living with Cerebral palsy and how to access early intervention and the right support system also known as a noise maker in Kenya

Andrea: So my name is Andrea Parra and I am an attorney by training and I have been an activist around issues related to disability since 2001. But I’ve had the possibility to work with different collective organizations of women with disabilities and my area of focus and work is the intersection between gender and disability and a mainly for an advocacy perspective because I don’t identify as a person with a disability. And more. So I’ve tried to work more from, from an allied technical perspective supporting groups of, and collectives of people with disabilities in their advocacy work to try to understand the law and the international human rights standards

Lizzie: Great, thank you. So, as you know, my name is Lizzie Kiama, and I am the Founder and Managing Trustee at This Ability Trust, where we work to advance the rights of women and girls with disabilities. And the reason we came up with the idea for a podcast was in light of the work that we do around creating visibility for the rights of women and girls with disabilities and also providing access to information and particularly in light of the global pandemic. The situation with the corona virus, we felt that it was important to begin to document meant experiences of women with disabilities in emergency health situations. And therefore, we are speaking every two weeks with groups of women with disabilities and other stakeholders. And we’re very thankful that you, you all were able to join us this afternoon. So I’ll start with you, Abby. And maybe if you could, share how communities of individuals and children with autism with autism, especially women, how are they experiencing life in quarantined within this global pandemic?

Abby: Yeah, thank you. Thanks, Lizzie. So in terms of autism, with it still still being quite a not very well known. You know, not too much you’d known about it. So, so services at any way in Kenya quite lacking, especially when it comes to adults with disabilities because of there hasn’t been too many out, you know, people who women in contextual women who want to disclose that information, because it’s still quite a taboo subject. So in terms of general support, there is very little and in terms of with this the quarantined Yeah, there is very little support and especially for the majority of Kenyans who, you know, can’t access many of the services. Very little help and, and, of course, many of the caregivers, mothers and caregivers who look after the children with autism. There’s does not much support at all.

Lizzie: Great, thank you. Do you mind talking from a personal experience? Like what what has it been like for you even from a mental health standpoint?

Abby:  Sure. So for me with the nature of autism, it is very, like we enjoy being by ourselves a lot and so this Quarantine, it’s good, but it’s draining, you know, I keep myself busy. I’m always working on something. But so, you know, I don’t mind it too much, but it’s getting a little too much. It’s, you know, missing people were missed. And of course, not being able to travel. I can’t be able to, you know, for example, come to Nairobi and do lots of meetings I had planned, which is frustrating, right? But this is where the Internet comes, you know, we’re so lucky to have this technology when we didn’t know.

Lizzie:  Yeah. You mentioned the nature of autism, could you maybe unpack what that is? Because we’re assuming that everyone knows what autism is

 Abby:  My apologies. So, autism is a spectrum of various disabilities. And, you know, people I get the message wrong that there is either I’d say the nonverbal or the very high high needs to the Albert Einstein, end of the spectrum, so, so, but it’s a variety of spectrums. I mean, you can have someone say who is nonverbal but extremely articulate and very smart and I’ve read a number of books by non speaking individuals and, and they come up with some incredible explanations as to why and how they feel. So it’s that misconception of seeing a nonverbal and just assuming so so there’s that. And there is their behavior. Their behavior is quite a big I hate to say the word red flag, but that’s, that’s the doctor version of it. But also behavior like sometimes I often do too repetitive stuff like, like, people like routine with autism. And then a routine is disrupted in any way. Like, say this. Corona, Corona virus. That’s, that’s Charles help with autism is his or her routine is disrupted. So it can be very hard and communication. Also, that’s another thing about them and and yeah, like I was saying before you, you know you be assumption that if someone is nonverbal they that they’re not able to understand or this or that, that’s wrong as well.

Like I learned to talk very, I was a three when I learned to talk and still always very mixed up jumbled. And so some of us do, gain speech and others. Not quite able to get there but that’s when they’re letting a matter number of different tools can be used in place of speech. Sorry, I hope I made sense.

Lizzie: Yes you did. Yes he did. And just hold on to your comment about tools and and you know, that can support individuals with autism. Let’s pick that up a bit later. But Maria, Maria Njeri. Do you mind? taking us through the challenges that women and girls with cerebral palsy in this context of the corona virus? Could you tell us about some of the experiences?

Maria Njeri: Cerebral palsy falls into two categories in disability, it can be either a physical disability, an intellectual disability. So, we’ll have always even in normal circumstances had a hard time how do we define it how do intervene for it for And also that has become the challenge in this time of the pandemic because one of the curses for people for women and girls with Cerebral palsy who have more of a physical impairment, then their access to health care such as therapy service. Medication has been limited and for those with intellectual disability, we are finding they’re becoming more venerable. But because of the social distancing and now there more at home, the more unsupervised. and so I think so the two main problems women with CP are facing.

Lizzie: Thank you. Thank you, Maria. I know we’ve had this conversation and even in the last

session that we had, the situation around violence, gender based and sexual violence for girls, particularly those with intellectual disabilities was a big concern, particularly now that people are confined to their homes and sometimes they’re confined with the perpetrators of this violence and they have no escape. So it was definitely something of concern.

Maria Rosa, do you mind telling us how feminism can play a role in ensuring that we advance health rights for women with disability? And why should we take a feminist approach to this conversation?

Maria RosaHi, everybody. Thank you, Lizzie. I think it’s now the crisis that we’re living now is showing us in a very, direct way, and also cruel way that woman and girls are not in this same condition than men. And yeah, especially if we are talking about women and girls with disability, for sure they are not in the same conditions than the men. So a feminist perspective or a feminist approach can help us to see I mean, the difference that we are living only because our gender you know, if you born a woman, you don’t have the same options than men. If you are a girl with disability and the rural areas, maybe for for you it’s much more complicated to access to health care, or also to information or even to new technologies that can teach you how to handle the crisis. So I think a feminist perspective can help us to see to try to see the reality of woman and by the other side. I mean, we women have a long story trying to build support networks. So I think Yeah, trying to see the the crisis from a feminist perspective can also also show us how to build these support networks, how to work together, how to, yeah, how to handle this new situation that we are living now and how to support each other and yeah, I think something that is also very important is now in the middle of these quarantined. The gender-based violence is growing a lot. So this is another thing that women are living now, and I mean, now it’s time to see what is happening and to do something about it, I think.

Lizzie: Thank you, thank you, in continuing the discussion around sexual and gender based violence, and for both you Abby and Maria Njeri, some of the issues around legal capacity, you know, that affect the bodily autonomy and decision making of women and girls with disabilities regardless of of the context, but especially when it comes to guardianship and caregiver situations, how are some of the ways that communities or individuals with either CP or autism can begin to protect themselves and I know it’s it comes from Accessing knowledge and information, but how what are some some other practical tips or resources that, you know you can share that these communities can can arm themselves with?

Abby: Okay, I’ll go. So, of course it costs a lot depends on where we’re about, you know, person is either in the rural areas or in more cities where, you know, like, say technologies to, for instance, groups, especially for caregivers and parents with autistic children. I think support makes all the difference and I know a number of mothers with autistic children who have have a online support group. And, you know, it makes all the difference when you have someone who understands and who you can talk to and like you communicate with them a fair amount, and we help each other and that’s the power of community and in some rural areas that around the country, sadly, that isn’t happening just yet. So, I think the way forward is to try and encourage trying to encourage parents, caregivers and you know Autistic women themselves. Though, of course, as I said before, many, many individuals don’t like to know they have nowhere to turn. There’s no one to talk to, and that ends up becoming very isolating and it is community that helps. So I would suggest your other support groups finding support groups and creating one and that’s what I learned from me as well. And personal speaking until I did, you know, join Facebook groups and met with parents and individuals who work with the spectrum in Kenya. It was very isolating for me.

Lizzie: So just picking up on that, before you respond, Marie Njeri, Abby, when when you’re talking when you speak about support, the support is directed at who the caregivers and guardians or to the individual with disability or without Autism,

Abby: Of course, should be both ideally. But as, as in Kenya that as of right now in Kenya, there aren’t very many women, girls, women, or girls with disability who, who are, who feel comfortable in opening up that discussion, because of the stigma and discrimination around it. And I have, you know, given talks to parents who, who are try to encourage them, you know, explain it to your children, talk to your children, and talk to girls about it and, and give them that. That courage to want to find others. Yeah. Sadly, it’s a very not talked about issue here. So I personally only know two other autistic women in Kenya. And I’m sure there are loads tons more. But there’s just that stigma still about really opening up to two. And I’m letting people know. Yes, I guess I have this. It’s not easy.

Lizzie:  Thank you. Thank you. Njeri do you have something to add?

Maria Njeri: I think that was profound. And I think to emphasis on what Abby is saying on support system and having the right support system is  Not only you, for  girl or woman with the different disabilities but for the people who are closest to her, because the people who are closes to are her are the biggest to enablers so if they support her and her decisions then that’s the way to go but also another thing next to add on that is the cultural and the medical perspectives of it and having the right processes and systems for them to access  the care they need and Lizzie if you don’t mind I have a story about a young lady I met.

Lizzie: l don’t mind go ahead.

Maria Njeri: She has cerebral palsy, but she has an Intellectual impairment and she sells her body in order to get food or to get a daily living and now she is pregnant with her second child and so the family approached me with a request on as he gets her second child can the doctor perform a medical what do we call it a medical intervention so that she does not have another children

Lizzie: To sterilize, basically. Yeah.

Maria Njeri: My first question was, is that what you want? They told me no, she can’t have other children because she can’t take care of them and we have to take care of their children to them. They had even involved the chief and all that, so I went back to the thinking about it from a cultural aspect and how we always say we never want to talk about a woman with disabilities as a woman or as a mother and we just take that credit from them I think a way I could provide the right processes how to go about all this. Does it make sense?

Lizzie: Yes, it does make sense. I’m curious about is the is the conversation still going on with this woman or did they arrive at a decision? What was the conclusion?

Maria Njeri: The conversations still going on we ensured that she got proper pre marital care that she needed and now we are waiting also another thing. Lizzie there no written legal document of how to go about sterilization of a woman with disabilities we don’t know how to go about it do we do we need a letter from the chief or do we need to go see a Magistrate there is no legal document on such a procedure

Andrea: I think that is a very common situation, also for us here in Latin America, and I think what you bring up and I think your instinct is completely right about first establishing what she wants, and the problem and this is the whole issue around informed consent to specific procedures. Both abortion and sterilization are procedures that only the person whose body is involved should be able to consent to. And the problem is that many times the information that women with disabilities receive is wrong. So they are misinformed about what this procedure means and about what that what that entails for them. So many times women with disabilities are told that they need to be sterilized. Because of health reasons, and when that doesn’t have any, any grounds there is a routine a and preference on the both on medical personnel families to want to sterilize women so others don’t have to take care of their children, which also involves a stereotype about women’s with disabilities, inability to be mothers.

So I think that is very important first, to ensure that this person has the right information about what she’s what the procedure is about, do. I think many times it is true that women with disabilities and get pregnant as a result of sexual violence, so I think that’s another thing to screen for. In this situation, if and what happens also, that is a very structural problem is that because women with disabilities have very little access to regular education and inclusive education. They receive very little information about sexuality and sexual education.

Like for example, in Colombia, it is mandatory for all schools to teach about sexuality, and which is very controversial, but there’s a big campaign on that on the part of activists for comprehensive sexual ed in schools, but because women with disabilities are excluded from the schooling system, they don’t have spaces where they receive information. One project that we worked on here was with the main sexual reproductive health care provider to create they have like a program for youth and education youth and we we worked with them for them to develop and include in their Sex Ed programs, young people with disabilities they are learning about their bodies and sexuality

So I don’t know this the specific situation of this person and of course, you know much more, what is the cultural context that she’s in? But I think the first step would be to check that she has the right information that this is a if this is a wanted pregnancy then she has a right to exercise, parental rights and maternity, and this is one one legal framework you were asking for I would recommend reading is the is the general common number three of the of the UN Committee on the Rights of People with Disabilities, which focuses on women and girls with disabilities.

Also the Special Rapporteurs report on Sexual and Reproductive Rights and of girls and young people, young women with disabilities has very clear guidelines about education and about informed consent. So the first thing I would say is to first establish what she knows her rights are what she wants to do, whether she wants to be a mother or not. And there’s a whole question of accessibility of information. No medical personnel should go ahead with a procedure without her direct consent, which is also the other problem that we were facing here in Colombia with guardianship laws that allow for a third party to consent to different procedures. So that’s what I would say, to begin with, I don’t know specifically to which authority if the chief has specifically or because I’m not that familiar with the local context, but I would first establish whether there has been informed consent properly and on that there are very clearly standards on what is what is important consent, and what she what information she has to make this decision to make this an informed decision. And what she wants specifically, before taking any steps before authorities or medical personnel.

Lizzie: Thank you very much

Abby: Just to add on to both Maria and Andreas point about the right sexual education and for disabled women, very much so, we need that a lot here. And the right, of course, the education that could be understood by persons with autism, by women with autism. And other Intellectual Disabilities, you know? Because as we all know, I’m talking about sex Anyway, here is quite a taboo subject. So people don’t do it. And and when it comes to the disabled girls and women, of course, it’s totally, no one even goes there. No one thinks that, you know, as disabled women, we have these needs, we have these rights. But of course right now, that’s not not considered.

Andrea: I think that’s so important. And I think one one strategy that we had here because in all honesty, the disability rights movement doesn’t have as much capacity to cover, like, a whole national context or anything like that. So what we did to actually was to To first like advocate before the main sexual reproductive health care provider, which is a, which I think in in Kenya, it’s Marie Stopes, or there’s an IPPF affiliates in Kenya. So those like who so what we did is because this organization has been around for many, many years here in Colombia, and they cover the whole country, they have clinics and offices in the whole country. So what we first did was to ally with them, so we trained their personnel first, and we’ve developed materials with them so they would start including protocols for providing services to women with disabilities across their clinics. So that was a way in which is not only DPOs and people on the ground trying to, you know, provide Sex Ed to other people with disabilities because we don’t like there’s no days and capacity or resources as much as these organizations that have been around for much longer

Abby: Definitely, yeah, we need to start doing that and and finding ways to for for women and girls who learn different ways we need to find different ways of absolutely bringing that conversation to them in ways that they understand and and they can, speak for themselves.

Andrea: And there’s actually pretty good material that it’s accessible sexual education for that gets in, in easy to read materials and like there’s actually good material in English especially. One that’s one thing we struggled with is that in Spanish, we don’t have a lot of material. But in English, there’s already a lot of good material on Sex Ed for, for people with intellectual and Psychosocial disabilities

Abby: I Have a look at some of them. That’s good ones. Yeah.

Lizzie: Great. Thanks, Maria Njeri, do you feel like your question was answered? Do you feel like you have a way forward?

Maria Njeri: Yes I have a way forward, but I have, one question maybe she ahs intellectual impairment an informed consent is abit challenging so how do we go about that also I think the third party rule applies here that the mother or the father or the care giver have the consent over her. So how do we go around that?

Andrea: Um, so first off, I think the question of, how to form the informed consent of her that’s a question of accessible information in the premise is that every person has a wheel, and that every person can express what they want and what they prefer. So the core of the convention is that we focus on a person’s will and preferences. So, this doesn’t mean that a person has to understand a medical contract, and then small letter that not even people without disabilities understand. So that doesn’t it. That’s not the point. The point is that there is a way to establish communication and sometimes with people who have been isolated for a long time in their lives. This can be tricky, but we did a project here in a pilot project. With 65 people with intellectual psychosocial disabilities in various situations, many people had been isolated in their rooms for their whole lives and what happened is there was a team of people who started like getting close to the person building trust, doing like dreams charts, and starting to identify their network of support. The quote, the problem with decades that you have money is that it’s the pregnant woman and pregnancy is a situation that is against the clock. So but so I, I didn’t understand very well if the question was whether she wanted to have an abortion or whether she wanted to be sterilized during delivery. And so those are two different situations. If the question is abortion, it then fast things need to be done because the pregnancy advances quickly, right. You only have a very limited space of time. If the question is the sterilization, sterilization is not a procedure that has to happen during delivery. And you can argue that until she expresses informed consent, that procedure doesn’t need to happen. Sterilization, if that’s what she wants later, she can have it still. That’s not that’s, that doesn’t have to be during delivery. And my question would be, is, is there a reason why the parents are consenting because she’s under guardianship legally,

Maria Njeri: She’s under guardianship and she’s also dependant on her family

Andrea: Yeah, dependency doesn’t mean that you don’t have legal capacity dependency, dependency is you can be in a very autonomous person and have dependency needs for your dress or your food feeding and what not. But the fact that you’re dependent doesn’t make you a incapacitated, per se, so if she has legal guardianship, we had the same situation here, and we had to fight it, especially. And I think right now, and I think it is possible to argue and we did it here before when we see had guardianship because we were able to pass a law that eliminates guardianship last year. But we have the same situation. And what we would argue is we would file a challenge before courts saying that even if you’re under guardianship, decisions over your sexuality and over your integrity and your bodily integrity should not be allowed to be guard made by the guardians, even if they can make economic and financial decisions legally. So that’s a fight.

We had the exact same situation that you’re saying. And a lot of parents were the ones authorized by authorizing sterilization, and abortions and things that were very intimate and personal and that only the person who’s buying these involves able to make. So I think that’s probably a fight. I’m not gonna deny that and it’s probably a fight before the courts to establish some standard that although the Kenya the Kenyan Supreme Court has some good decisions on sexual reproductive rights, so I think you can use Kenyan law. So I think that that if if the parents are insisting on sterilization, and she’s it’s not what you want, I think you need to go into a legal fights, unfortunately But that’s how we’ve made a lot of the wins. So I’m happy to put you in touch if that’s helpful. And but I think that that, yeah, I mean, I think we need to fight for it. Even if there is a call, even if we are in countries where guardianship is still allowable. We shouldn’t allow for very intimate decisions to be made by guardians. And actually, there’s, there’s several like medical statements about sterilization should only be made by the person who’s been sterilized, etc.

Maria Njeri:  Super. Thank you.

Lizzie: Prepare for a fight Njeri.

Andrea: But probably everybody in this call is a fighter already. So

Lizzie: We were going to go into how women with disabilities are accessing information particularly within this, this kind of situation and the stories around that but I think the story that Maria Njeri brought up, covers that so I will just go into the next bit in terms of other opportunities to create visibility for some of the issues that are happening now. And probably even riding on what the fight that you’re about to get into Maria 

Maria Njeri: I think I can start with that one of course opportunity for visibilities’ of  women with disabilities are always there and it  goes without saying awareness and also access to the accurate information without this two visibility is not there and I guess and as we are speaking am thinking we are expert of knowledge and experts of experience and if I Andrea can  share the information Abby and you Lizzie can we can have a strong impact on it

Abby: I definitely agree with Maria. You know, there’s always opportunities and the more visible we as disabled women are and can bring forth these discussions and consensus conversations. I think though we can we can move forward. It will be fight but you know we can do it with we women can do

Lizzie: In terms of increasing visibility and the access to information, particularly now that people are confined to their homes and you know, we are adhering to the social distancing. Are there some innovative tools or, tips on how women with disabilities or persons with disabilities in general can begin to access information, because we’ve had complaints of you know, government addresses around the corona virus, not accessible to various groups of individuals with disabilities sign language is not being provided, and information is being sent either via social media.

So the assumption is everyone has access to Internet, which is not true. Or, you know, the Ministry of Health is sending mass SMS is on mobile mobile phones so the assumption is everyone is literate. Everyone has access to mobile phones or Internet. How else can we? What what what strategies or solutions can you share with possibly the listeners of this conversation?

Andrea: And so I think these type of conversations are key, I think that it is true the the question of access to technology is very tricky. And but I think that like low tech options like just phone calls and like conference calls are one option. And like also putting together for people who do have access to internet like information about their members like who is out there who they need to call or they need to reach out to try to figure out I’m pasting in the chat. I give this to my arrows to the this resources that I that International Disability Alliance is compiling on covert and disability which I think has been information on specifically targeting women with disabilities. But here we’ve also had to fight like the president didn’t have sign language in the initial things and so or sometimes media when the sign language was next to the person speaking, they would just cut them off the screen. It’s like things like that we see here a lot also. So we’ve been using trying to use social media also to challenge those behaviors. We went to a meeting with the mayor’s office, and that is doing a lot of their aid like giving groceries and things to people who are impacted by this situation and also demand that accessibility of all information and they’ve done somewhat okay job, but I think we need us civil society to keep pressuring about this.

Lizzie: Thank you, Andrea. Anyone else?

Abby: Um, I think the more we have these type of conversations and and by our pages and, of course, I’m talking for people with access to technology. But I also think if it isn’t doing like, even zoom interviews with various media houses in Kenya, like interviews, maybe we could infuse, I’ve tried to get a number going because this month is world Autism Awareness Month. So I’m trying to get a few you know, zoom interviews or whatever going with some of these because, because that is another way of reaching out to people and getting awareness out there. Yeah.

Millicent: Just to add on to it, I think because looking at the Kenyan setup, like the rural set up, I think it’s important for this information also to be given out in a language that the women understand because if you look at the bulk SMS that the government is sending out there in English, the assumption is everybody will be able to read and understand which is not the case. So I think it’s also important Yeah, to make use of Yeah, of language that is, you know, understandable, and, like we have our local radio stations that is listened especially in the rural areas, covering different regions. So I think that is also should be a mode medium that they could use to pass the information. And this speaks in the vernacular languages. So it is more clearer and more understandable. It will speak to them.

Andrea: Yeah, I think a community radio is a great option. And also translation to local languages is a key.

Abby: Very much so. I definitely agree that needs to.

Maria Njeri: Yeah, I wanted to thank you Millicent for mentioning that but also going back to the basic remember how urgent information used to be given out by the elders of the community or by the gate keeper so it will be very nice to see ministry of health using the community gate keepers to send out information so that will be another way

Lizzie: Great. Um, Maria Rosa, do you have anything to add?

Maria Rosa: No, not really. I just want to thank everybody. I learned a lot from all of you now. And yeah, I think now we have, every time that we develop a new podcast, we have more and more questions, and more and more ideas. And again, that’s good for everybody.

Andrea: I think it’d be a good idea to look at the African regional body and to see what the human rights standards in the in the regional body are good, and some are good, some are good in disability and some are good on gender. So I think using those, that framework is also useful for the African region.

Lizzie: Great, great. Okay. So this was around access to information and creating visibility. And, Abby, you mentioned, the world Autism Awareness Day. That is coming up. If there’s any way we can support if even if it just amplifying it on our social media, Maria the same as yourself, you know, it would be nice to support one another, particularly now that we’re all stuck at home working online. That’s least I think we can do. So I think it’ll be useful to share some of these, the things that you’re working on and see how the rest of us can amplify your early. Yeah, definitely.

Abby: So I have a page on Face book where I post various articles regarding autism and the rights and, and information but as Maria pointed out, the right is information, because we all know there’s a lot of the wrong information out there. So it’s what I post mainly is from self advocates, and I do books on women’s right.

Andrea: Abby, What’s the Facebook page?

Abby: Walking Autism. It’s my project. It’s a project for the page. Walking Autism. So yeah, if you want to check it out and share some of those, so it would be that would be helpful. Yeah,

Abby: Yeah, but thank you so much for including me in this conversation .I look forward to many more.

Lizzie: Yes, definitely. Marie Njeri, do you have any anything to add about the work that you do?

Maria Njeri: Because a lot of the work probably we do is out in the field so that has stopped being rescheduled but you can follow me on Twitter. @NjeriMaria2 on Facebook @ MariaNjeri and Yeah, I think I just want to say the fight continues

Lizzie: It does. We’ll get them. We fighters. Yeah.

Abby: Our ancestors didn’t fight for nothing. Carry on flight.

Lizzie: Andrea, Any any parting words?

Andrea: No, just a pleasure to be here. Thank you, Liz, for your patience and for inviting me. I really hope that we can maybe mediate some conversations with some of the Latin American groups. I’m happy to support translation and stuff. So please keep me in mind for that. I know that a many people here would appreciate also having that kind of exchange.

Lizzie That would be great. Yeah, I think we can definitely figure that out. So thank you very much and with that I’d like to close this

(Music) Outro

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The End

Paza-Episode 1

Paza Podcast

Disability and Covid-19: Documenting the experiences of women with disabilities during the global pandemic.

Recorded on March 19th, 2020

Full Audio-Text Transcription

(Music) Intro:

Hello everybody! Thank you so much for joining our conversations on Paza! Paza, a Swahili word meaning to amplify, is an initiative by This Ability Trust. Paza seeks to document and create visibility for the experiences of women with disabilities globally.

We look forward to hearing from you, so remember to share your support and feedback on our social media platforms. To continue this conversation, please follow our Twitter page @pazapodcast

For more content on This Ability’s work and projects, please follow This Ability on Twitter and Instagram @this_ability_ke and on Facebook

Now let’s get into todays topic of discussion

Lizzie: So thank you so much everybody for joining. I would just like with a round of introductions I’ll start with you Ash.

Ash: This is Aiswarya Rao. I’m a pediatrician and I’m a woman with the locomotive disability. I’m calling from Chennai, that is in South India. So that’s about me, I run a shelter for women with disability in Chennai. We have about at any point of time 60 women with all kinds of disabilities staying in the shelter with us. And what we are looking for, primarily, through the shelter is employability of women of different capacities better employment opportunities. So that’s about me.

Lizzie: Great. Thank you so much Ash. And Sophie.

Sophie: Hi everybody. I’m Sophie Morgan. I’m from the UK. I’m a disability advocate, and also an activist campaigner. I work mostly in the media myself, advocating for better representation for disabled people but also work in retail and travel to help improve representation. They’re for disabled people too. So yeah, I’m based in London.

Lizzie: Thank you very much, everybody. And for those who do not know me, my name is Lizzie Kiama and I am the Managing Trustee of This Ability Trust. I founded This Ability in 2012, and our focus has always been advancing the rights of women with disability. This whole Corona virus thing got us thinking in terms of how communities a woman with disabilities are responding, whether this information is reaching them whether they have the necessary skills support and resources to navigate through this pandemic. But also on the flip side, we were thinking about, you know, the various recommendations that are being given in terms of trying to not get infected, the social distancing the isolation, and how, you know, women who disabilities have had to build these skills over the years because of a very inaccessible environment.

So, can we just get right into it because we would love to know, what is Corona virus from a medical stand point.

Ash: So, Corona virus, there’s just too much of information overload about the virus everywhere. As as a lot of us have Reading and hearing about it. But the simple facts of the corona virus is this. The Corona virus is a respiratory virus. It has always existed. But what we are dealing with right now is the novel strain of the corona virus. And it is an exceptionally, very infective infection. It started in China. It’s a it’s a zoonotic infection, which means the virus existed when wild animals probably bad and because of the mutation that rendered it very, very effective. It jumped from the bat into the human population, and from then on, it has been increasingly spreading from one person to another at an alarming rate. The common symptoms are very, very common just like any other flu, like fever, upper respiratory, sneezing, cough, and but lung infection. But the one thing that distinguishes the normal coronavirus or the disease The Covid-19 as it’s called, is that there is a mortality rate of one person, at least one person, but the mortality rate will differ depending on which healthcare setting you are in. A facility in Canada will be very different from a rural facility in India for example, but at this point from whatever data that health authorities have been able to combine, they say that rate of 1% which is very high in a highly populous country like India or some of the countries in Africa, I would assume. So, this is it and it is spreading, it is spreading alarmingly more than 166 countries. From this in December, there was only one. The first case was reported first week of December in China. But today, all 166 countries across the world have reported in some countries more than other countries. So, it is a as we speak, it’s a global pandemic and it is spending more and more. I think these are the basic facts.

Lizzie: Thank you. Thank you Ash, could you maybe speak about those students in India?

Ash: Yes, we are behind the global epidemic. So, as you know epidemics have four phases one is people who came into from the epicenter people in either China or the very high prevalence countries like France or Italy. So, that is that is the first phase of deployment and the second phase of the epidemic is contacts their family members or anybody that those people who actually tested positive for coronavirus when or who have come into contact with them. So, right now India is only at phase two. We are only seeing new infections. Like all of India, we have 1.3 billion population, but, as of today, the country has notified only around 160 cases. So it’s very, very early. But in the next week or even the next two weeks we expect, like what the health authorities, the foremost hydrologist in India, dr. john, he said that it’s going to be an avalanche of cases because of overcrowding, poverty, and lack of access to health care, we are going to have a huge problem on our hands. Right now. Most of the Indian population has heard about it, we’ll be getting a lot of information. But still we are in a state of denial. We’re thinking, you know, there’s just too much. They’re making a big deal out of it. Because we have, we haven’t really experienced the, the tragic part of the epidemic so far amongst us. So this is the India’s and India is again a huge country, hugely diverse population. We speak numerous languages very, very different. Cultural, many cultures in one country. So we have 36 states, each state is like a country is like a European country or even a small African country. So this diverse population, and every state has its own way of dealing with this epidemic. We’re not seeing the country’s apex body come up, put everyone on board, increase testing, and awareness. See, for example, last week, we had this information that went out and about, you know, coughing and keeping a safe distance, the general precautions, but that was all issued in one language in the only about 25 to 30% of the country speak the language, most of India does not speak Hindi. All our telephones whenever we call we had this call tune and this Hindi message, the most people didn’t understand. So there’s, it’s like, extremely poor coordinated effort by the government and we really don’t know what is going to happen. We are watching. So every state has its own separate response. Some states are responding better. My state is the southern state of Tamil Nadu, we can’t say is very poor, but we are also not the best we should do more. So this is India story and, it is frightening, actually.

Lizzie: And what about the women in the shelter that you you coordinate, you know, what’s the experience?

Ash: Yes, the shelter. It’s very funny, but the women in the shelter are all because we spoke to them about it. And they’re all the women with disabilities are always on cell phones and they’re accessing information. So they are, they’re all aware of this information. We have all the children there. They are the college ones. They are not going out. They’re staying in the shelter and we are advising the same, you know, hand sanitization and staying at least three feet apart. So, general precautions as of now no symptoms, luckily. So we’re just waiting, nothing more than that. Also, travel, a lot of the travel is suspended. So a lot of the women who want to go back home, haven’t gone back home. They’re just staying at the shelter. So we will wait and see what will happen. We have not been provided masks because masks are in very high demand. Also, it’s not necessary yet because none of them are having any symptoms. So, but even there is a shortage of hand sanitizer. We as of now we have some stock but we rely on water and soap and stuff like that. So I think we are somewhat prepared. We should be more prepared, but we will. You know, we will get to that level of preparedness. When the when we when we hit that bridge.

Lizzie: So in terms of preparedness, you’re left to your own resources. Is the government supporting you in any way? Absolutely.

Ash: No, no, they’re sending us information, do this clean this and, you know, provide mass and do this do this, but they’re not doing anything they just policing us. The government itself is pretty much confused. There’s no one person calling the shots there. So no, we are not having that. We’re not having any support from the government authorities yet.

Lizzie: Okay, interesting. Thank you for that. Thank you for that brief explanation of what’s going on in India. Sophie, Hi, would you like to share what’s what’s going on in the UK. And also, you know, if you’ve come across any innovative solutions that are connected Persons with Disabilities with this critical information and access to services.

Sophie: It’s got quite bad over here, as you guys might have seen in the news and the UK now is I don’t know how many cases that we’ve got. But basically London just gone into lockdown. And there’s a lot of procedures and structures coming into play to that stop people from coming in contact with each other. So government guidance has been very much that we need to socially distance ourselves from each other. And that’s meaning a lot of people are working from home. What we have seen, unfortunately, is that the government hasn’t put yet an outright ban on going into some of the public spaces. So for example, pubs and restaurants have been advised not where we’ve been advised not to go to them, but many people still are. And so we’re expecting there to be a full lockdown kind of in the same way that Italy has seen and it’s population locked down and kept at home, we were expecting that kind of same measures to start to happening here. But at the moment, there’s a lot of responsibility being put on the population themselves. And what that does is leave, because a lot of the responsibility is being put on the community that the population itself, to self regulate how to manage this, what we’re seeing is that people are going well, “It’s not really my problem. I’m not vulnerable, I don’t have a disability, this is for people in the communities that you know, it’s not me, it means that is putting that particular community a huge risk”. So a lot of disabled people are coming out trying to educate people as to how you know, vulnerable they feel and how important it is that we all look after each other at this time. And that being said, it’s also been really interesting to see how the community here, the disabled community here have responded with advice and guidance on how to best manage being at home and spending time at home and, and actually, you know, we disabled people, disabled women have a lot of experience of being isolated or being at home of not being able to get to work or having to prioritize their health over everything else. So as our communities are starting to see and experience the same thing, we are able to say look, we’ve been here before we can we can help you and don’t look to us as just vulnerable and you know, the one that needs to be looked after we in turn who look after you at this point, mentally, we can give you tips on how best to you know, structure your day and manage your well being and things so it’s been a really interesting few days and weeks, and of course, it’s still unfolding and changes are happening rapidly every day we’re getting different government advice.

So a lot going on and but to answer your other question about how we’re sharing information. And really what’s being put out there for disabled people. What I have noticed is we are leaning on each other. And we are taking information that is being put out by the government. And we are trying very much to decipher what is relevant to us. As I said before, unfortunately, because the government has not issued more hard guideline guidelines yet, a lot of the able bodied community is kind of saying, right? Well, that’s their problem. And that’s, that’s leaving us a little bit vulnerable, but we know how to look after each of ourselves. So we’re leaning on each other for advice and help and a lot of sort of community support networks cropping up so people can help those with disabilities. We’re seeing really amazing measures such as, you know, pieces of paper that are being distributed on social media that you could print off with information on how to educate people around you. If you have a compromised immune system and you don’t want to have someone come to your home that could infect you, you know, posters that you can put onto your walls, with information on how to educate them as to not infect you. So, you know, information and, and support is really rapidly spreading through social media, which is really exciting to see and encouraging because it can feel very isolating right now.

Lizzie: That’s true. But I love the fact that, we’re also able to shift that narrative from, the charity and the vulnerability that mainstream societies used to placing people with disabilities and now we’re shifting, and saying, that there are actually best practices that, society can borrow from the disability community

Sophie: I find it really interesting, you know, I don’t know about you, but I’ve watched you know, a number of celebrities around the world that I follow on social media, and they’re all “Day three or four, and oh, my gosh, I can’t handle it. melt down, you know, what am I going to do? And I’m like, hey, I’ve done this yet. You know, it’s kind of funny, we’re all sort of going, come on, you know, man up here? It’s really interesting. So, actually, whilst you know we’re watching the world kind of, of course, there’s very justified to be worried about what’s happening right now if that fear is justified completely, but the coping with the working from home, it’s really interesting to watch. Another thing and unexpected consequence that is yet to play out and I’m interested to see is how the world is having to adapt to people working from home and adapt to situations which disabled people have been in for a long time. Is that going to change the way that businesses actually encounter an organization’s look after us? Are they going to see now that have that now that they’ve seen all their employees to work from home and manage themselves from a different working environment? Does that mean that we’re going to see different changes when all this comes to an end? That will mean that disabled people can fit into the workplace a lot more effectively? I don’t know. It’s exciting, but I think there could be silver linings. Let me just say, I do see it’s interesting because I mean, I’ve had number of people reach out to me and say, you don’t realize I lost my job last year because I had to work from home because of illness and disability. And now all my colleagues are working from home. you know, the consequences to this are really quite interesting. So, yeah, we’ll see what happens.

Lizzie: I’m yeah, I’m also seeing the fact that you know, there might be a silver lining to all this and probably this pandemic will bring us to ground zero and, allow us to build systems that are truly inclusive for everyone and that work for everyone

Sophie: Absolutely and for once, we might see that this vulnerability that we all have as human beings, but many take for granted. We can see that the disabled who live with this can think in a very different way. I mean, it really could bring to the to the forefront a different perspective, that vulnerability is strength. That opportunity is found in adversity and disabled people are so resilient. And so adaptive when it comes to having to live in a world that doesn’t suit their needs, what can we teach the wider world about that?

One thing I was interested in hearing you talk about as just then is disabled women, you were saying a lot of people are on their phones. And I don’t know about you guys, but I’m on my phone right now. All the time. I mean, everyone’s saying it’s not healthy to spend a huge amount of time on social media, but that’s just really hard to do to not be on it all the time. And I wanted to know if any of you have found a really good hashtag or one place the way we can disseminate information through. At the moment with you know that I haven’t seen that here in the UK. It’s more we’re sharing accounts or people that might have a good voice or if you have charities or DPOs that know a little bit more, we can signpost to that. But have you seen anything a bit more disability focused?

Ash: To answer Sophie’s question on, you know, whether there’s anything specifically for information on disability and the epidemic right now. A bunch of us we call ourselves the Disability Rights Alliance in India, activists from all over India it’s a very loose social group, Social Media Group. So we put out a website on WordPress, it’s a very small blog, we call it the AIDER or Addressing and Including Diversity in Emergency Response, just a one page website but it contains all the links from government sources WHO, CDC etc. With some information very little, we just wanted to put everything in one place. So we will be adding to this, so this is an effort from the disability community for you know, providing information for someone with a disability and coping with the current situation.

Sophie: That’s really thanks for like, I’d love to share that here in the UK as well. And I of course after this, we can all connect and share what we’ve got resource wise I just feel there should be a global coming together of all of us like we are here now doing that we should bring in as many partners we are all connected to, because I do feel that the disabled community whilst we are being talked about as being the most vulnerable, especially here in the UK. That’s the conversation at the moment is that this virus is particularly threatening to that group of people. Everyone’s talking about disabled people and vulnerable people. It’s very important that the information gets to those particular people and that those people speak for themselves about what’s going on and what they need to learn. So yeah, and

Ash: Like you all mentioned, I did a search on Twitter, disability and the current situation, and the only thing that it threw for me was this work from home. You know, lots of people are talking about how people with disability have always propagated working from home and how it is so doable. So this is the only context in which disability is appearing on Twitter feeds here in India.

Maria Rosa: I want to add just something little because what I think is that we also need to be specific about how women with disability not only not all people with disabilities, is like how women are handling handle it. Sorry, and I think I mean, there are two important things, actually woman women with disability usually, I mean, are more isolated than men with disabilities. And actually, I mean, I can talk a little bit about Kenya, about Latin America them usually do the care job at their homes. So now, I think for some of them, it is true, there is a now we have the opportunity to learn about how to handle the isolation, also true that some of them are in really vulnerable conditions. Actually, I was reading something the last week about how women with disability are trying to handle the violence at home. I mean, the gender based violence at home, because now that in some countries, everybody’s at home all the day, they get anxious, and usually the violence is against them. So I can tell you, for example, and I think that’s important to maybe, to share, in Colombia, they open a hotline and there are women with disability. I mean, picking the phone, but they are giving support to other women with disability who are suffering violence inside home. And I think it’s very important to share this kind of experience because in some point, maybe we should start with those things like that. Because, women are not in the same situation than men with disability in the middle of this crisis.

Sophie: Really good point. I mean, all of the issues that women in general are facing now in increased violence, gender based violence, disabled women are disproportionately affected by that I can. I think that’s such a valid point.

Maria Rosa: And actually, for example, in some countries in South America, when somebody needs to go to the hospital is know the woman. They lead the woman for the second of the third option, and when a man is sick, everybody goes with him to the hospital, but when we when it’s about women, they don’t have the same story. To go down to the hospital. So yeah, I think, like woman in different conditions than men, and for sure women and girls with disability, are in a more vulnerable conditions.

Lizzie: Yeah, that’s definitely true. I don’t, I’m not sure, like what is in place in terms of, you know, emergency preparedness from your various governments, but I can speak for Kenya. And, you know, the women with disabilities are virtually invisible in, you know, programming and policy. So, to even allocate budgets that speak to the reality of women with disabilities and their needs is non existent. In refugee camps, for example, you know, things like issues around sexual and reproductive health are not taken into consideration, because it’s not something you know, the government has prepared for us. I’m curious about what your governments, your specific governments are doing from a social protection standpoint to ensure that maybe not only women have disabilities, but women in general are able to access services that they need on a day to day. Is there anything in India or the UK or Ecuador?

Sophie: Well, speaking from the UK, I have to say that we are in emergency response mode, it seems here so I, as far as I’m aware, so little is being done, measures being put in place, but it’s got to be done quicker. And of course, the community itself is recognizing that women with disabilities and girls with disabilities are disproportionately more affected by things like Gender-based violence. And so therefore, everything that’s going on right now, just we’re particularly vulnerable, but the problem is is that we’ve got so much to deal with the country is in lockdown is in panic, the army’s being brought into London to stop controlling people. It is, really that, rapid response. So, the answer is from me here. I think that we’re not there yet. We’re not ready yet. We aren’t prepared to help. And we’re doing the best that we can, of course, but I don’t. I mean, I say we, the government is doing. Yeah. But you know, it’s early days. And of course, at the moment, the real experience is a terrifying one for so many disabled people.

Clarence: Lizzie, we can also see that the government is trying to train the nurses on how to handle the coronavirus but for women with disabilities. When you go to the hospitals you can confirm that there’s no there’s no sign language interpreters for the Deaf. This is no accurate accessibility of the hospitals.

Lizzie: Yeah, that is a reality.

Millicent: You find the women, they go and fetch water from the river. And then here they’re being told you need to wash your hands with running water. So this is a woman with disability who depends on somebody else for such kind of services. So what is the government and you know, with all the money that is coming in, they have not even thought about this kind of this part of the population of Kenya, that they need to be included in whatever budgetary allocations that are taking place, whatever aid that is coming in to fight this, this particular issue, epidemic, because you’re being taught to sanitize, even in the urban areas, the middle income earning class, like know, the prices for the sanitizers have really skyrocketed. They’re not even available. So how is the government expecting a woman in the village to be able to access this kind of thing. So, I also believe that the ultimate information is being passed. It is to elite. It is not really speaking to our women with disabilities in their real actual, it’s not real. It’s a bit up there.

Sophie: As similar stories being told here in the UK that that even though Yeah, like you say that the hand sanitizers are being bought by other people and women with disabilities and people with disabilities are not being able to get access to that either. And, actually, you know, masks have been taken up, all of the resources and all of the things that are needed. For the day to day, lives of disabled people are being taken away, or the prices being put up. And other people are stockpiling and hoarding that and taking it away from people. So the government might be putting measures in place, but other people are taking advantage of it. So still, once again, disabled people are being left behind.

Lizzie: And also how this information is spreading, like I’m on social media. So, I get a lot of information like on Twitter, and, other social media platforms, but very limited information is being shared on mobile phones, the majority of the population in Kenya has access to those. But Internet, if you’re in a remote area, you don’t have, access to internet so even how this information is being shared

Sophie: Over here in the UK is that people are like I said earlier, they are realizing that that there are people hidden away thousands of people are hidden away with disabilities, now that everyone’s retreating into their own homes. So there is a more of an awareness or a sympathy, but still, the resources aren’t going to get to those people without the right, the right support to get to them. If that makes sense. It’s still, you know, there’s an awareness being raised, but yet people still don’t know how to get the resources there.

Ash: I just want to jump in right now and talk about how social distancing in some context for people with high care needs like a child with the cerebral palsy or somebody who’s completely dependent on caregiver for everyday living by family members or somebody assisting them? How are we going to do the social distancing? How is that going to work? So there’s no word about it. You know, anywhere any Advisory has not come up. Just a mention about how that can be done is not there. So I find that extremely, you know, upsetting. So, that’s one thing and also, I’m wondering about when we go into isolation about our mental health. Somebody who’s isolated, what I mean, how it’s going to affect somebody who’s already having panic

Lizzie: Psychosocial disabilities

Maria Rosa: Depression actually too.

Ash: Yes, depression. And especially somebody who is suicidal, but you’re isolated and you need to see somebody. I mean, how’s that going to work out in the days in the weeks to come? So I’m just wondering what we are going to uncover here.

Sophie: I really feel it’s gonna have to come from us. Not government.

Lizzie: I definitely think that it comes from us. Unfortunately, I actually like the flip side to this whole pandemic is because it’s allowing, it’s forcing us to look inward, and to not rely on Big brother to, solve our problems. We have to learn how to be self- reliant. I don’t think fear should be part of it. We need practical solutions, which we get from our networks. And this could be a network. I don’t know about the large organizations. I would be wary of, you know, trying to get them, to support because they’re also looking at the mainstream. You know, they have to solve problems that affect a large group of people and people with disabilities for a long time, they have not considered them a significant population. So why would they start now? I think it’s on us.

Maria Rosa: May I jump now? Now is the time I mean, of course, is up to this day to guarantee everybody, right. But now it’s also time to learn about the support networks and I think the feminist and I’m sorry, but I’m a feminist, but the feminist movement since the last two centuries, can teach everybody a lot. I mean, woman, we know how to support each other. And I think now, we cannot wait a lot of the from the States so it’s not Now, the time to I mean, to build support networks all around.

Sophie: So can I ask you in light of that, what would you say is the first what is the information that you think we need to spread first? Is it about the basics of how to protect yourself and sanitize and look after your well being on the basic level? Is that not getting through? Is it about how to manage when yourself isolating? Is it what Where do you think we could start because I feel very much in agreement women can help each other here as disabled women can help each other in particular. But what do we need to identify? Where do we start?

Lizzie: For me, I think centering women with disabilities in this discourse is critical. Like, this things that you know, for example, Ash, what you’re talking about, you know, a child with cerebral palsy who needs help from a caregiver, and this information that is being shared by government on how to protect yourself does not include a disability aspect. within this discourse is important, and whatever information is being put out there, whether it’s sanitation and hygiene, and you know, whatever it is, you know, how do we apply a disability lens to that, you know, and how do we look at it from a disability perspective, you know, how would a deaf person a blind person, somebody in a wheelchair

Ash: with lung disease, exactly how I would be cardiovascular disease?

Lizzie: Practically, how would they respond to this information? How does it make sense this is just my take.

Ash: I would, first of all emphasize or demand that all government information, their websites and their announcements today evening, our prime minister said to talk to the nation. And I’m just looking to see that he sent out a PMO officer a letter saying we want to sign language interpretation for his for his speech. But again, once country like India, we don’t have one sign language that everyone understands. So there are those challenges there. But we must insist that every information coming out must be inclusive. That’s one thing and then general information. And how do you make all other hand sanitizers? Because washing is again, a very big challenge for a lot of us, especially the limited mobility people. So that you must have access to sanitizers and stuff like that. And just generally information itself is more important.

Sophie: I think it’s so interesting to see how all of the issues that we face, I think you mentioned this before, one of you about how these are issues we’ve been facing forever lack of communication and the spread of information is, it’s something that just cuts disabled people off, you know, if you have any hearing impairment, you’re not going to get that information. It’s just compounded right now because of the urgency with which we need information. So, I mean, as somebody who uses social media as much as I can I don’t have a huge following, but I’m trying to spread as much information as possible. And I think that’s key, but like, you see so many people without internet, without phones, how do we get to them? And so I’m hearing it’s partly we want to lean on our government, but partly we want to take control for ourselves and take that give that information so I guess it’s a joined up effort, isn’t it? We need both.

All: It is a joint effort. Yes, it is. Yeah.

Millicent: Yeah. And I think we also have to use just our spaces make noise until the government has and does something about it. Because we are because if we don’t speak out, they will think we are fine.

Clarence: Okay.

Millicent: Yeah, we are Okay. I think it’s a high time that we use to whatever spaces that we are in. To call out and make the noise so that they realize that there’s a population that is being left behind. And that is equally affected by the epidemic, just like everybody else.

Lizzie: So I just want to thank all of you. I hope this was useful this. Thank you so much for your openness and for your willingness and for your time and energy.

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