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.

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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 Rosa:  Hi, 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

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

Recorded on March 19^th, 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.

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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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