Nurse Rosebelle Mutuku remembers vividly the first time she encountered a patient with disability while on shift at the maternity wing of a local hospital. “She had her left leg amputated and needed a walking aid. The labor stage went well, but when it came to the delivery, the routine instructions that I would give to mothers while giving birth such as flexing of the legs and lying on the back proved difficult for her,” says nurse Mutuku. “I felt frustrated and helpless and had to seek help from the doctor and other nurses for a safe delivery.” 

 In 2020, UNFPA supported disability rights organization This-Ability Trust to conduct an assessment of healthcare workers’ skills on sexual and reproductive health and disability. The assessment established that many healthcare workers had sub-optimal skills to address SRH needs of persons with disabilities. This led to the launch of a five-week training course to equip healthcare workers with the knowledge and skills to provide rights-based non-discriminatory family planning, HIV and maternal health care, and gender-based violence response services to women and girls with disabilities.

person
This-Ability Trust Managing Trustee Lizzie Kiama and Project Manager Maria Rosa Cevallos award certificates to healthcare workers who have completed the course

Persons with disabilities make up 2.2% of the Kenyan population, a majority of whom (57%), are women and girls. Women with disabilities often face prejudice, stigma, and discrimination in accessing health services. Limited knowledge and understanding of the health needs of persons with disabilities by healthcare providers also hinders access to sexual and reproductive health services and information for women with disabilities. “Majority of health workers have inadequate training and professional development about disability, which impacts on the way they provide care to people with disabilities,” says This-Ability Trust Managing Trustee, Ms. Lizzie Kiama.

For Catherine Syokau, a 30-year-old mother of one, her experience while giving birth as a woman with a lower limb disability reaffirmed her view that more effort needs to be made towards an inclusive healthcare system. “During my antenatal clinic visits, I would get strange looks from other women in the waiting area. After giving birth to my baby, staying at the hospital was challenging because the beds and toilets were not modified for a patient with disabilities,” she says. Ms. Syokau believes that programmes that adequately prepare healthcare workers and facilities to serve persons with disabilities should be given priority as the country moves to implement universal health coverage. 

a man in a wheelchair with a woman in a mask
Catherine Syokau is a mother and an advocate for the rights of women and girls with disabilities

Anne Gitonga, a nurse at the Riruta Health Center in the Nairobi City County successfully completed the course on sexual and reproductive health services and disability. “The training opened my eyes on how to better serve patients with disabilities by ensuring that their rights and needs are respected right from the initial consultation to the administering of treatment,” she says. Nurse Mutuku is also eager to improve her service delivery with knowledge gained from the course. “I am now more aware of the changes I need to make in providing services such as family planning. This should be a private conversation between the healthcare provider and the client which can be facilitated by learning sign language, or preparing information products in braille,” she says. 
 
Fifty healthcare workers who included nurses, midwives, and clinical officers have so far graduated from the course. “The healthcare workers trained through this programme are not only able to provide better services to persons with disabilities, but they also acquire skills to advocate for better policies that promote inclusive and accessible healthcare for women and girls with disabilities in public health facilities,” says UNFPA HIV and Disability Program Analyst, Ms. Lilian Langat. 

Like every emergency does, the Covid-19 Pandemic has had a disproportionate and larger negative impact on vulnerable communities. The pandemic has affected people of all categories, but persons with disabilities have been hardest hit.

In addressing challenges faced by persons with disabilities during these difficult times, UNFPA Representative, Dr. Ademola Olajide and This- Ability Trust Managing Trustee, Lizzie Kiama, set out to Kisumu and Kakamega counties to assess the impact of Covid-19 on the community and identify feasible mitigating measures.

The team interacted with women and girls with disabilities, the County Government leadership and disability focal points to explore the impact of Covid-19 on access to sexual and reproductive health information and services. The main challenges, according to the women, are stigma, discrimination

and insufficient capacity by health personnel to attend to women living with disabilities.

“Physical distancing is nearly impossible for many who rely on caregivers. We need assistance from people to get dressed, move about and even wash hands in public spaces to keep COVID19 away,” explained Benter Bella, the Chairperson of the Women with Disabilities Organisation.

A visit to Nyalenda Medical Centre confirmed lack of sufficient disability friendly infrastructure like beds, sign language interpretation, ramps, bathrooms and toilets. The team was told that there has been a drop in the number of visits since the COVID-19 pandemic hit the country.

UNFPA committed to work closely with the Kisumu County Government and This-Ability Trust to ensure improvement of service provision to women and girls with disabilities. Priority will be given to ensuring

improved infrastructure in a pilot medical facility and training of the medical personnel to reduce stigma, and improve communication with people with disability.

UNFPA donated assorted COVID-19 PPE kits to the Kisumu Government through the Kenya Red Cross. The donation was received by the Kisumu County Deputy Governor, Dr. Matthew Owili, and the County Executive Committee Members for Health, Prof. Boaz Nyunya.

The County Governor who also chairs the Council of Governors, H.E. Wycliffe Oparanya, received the team in Kakamega County. Governor Oparanya explained the milestones his government has made in improving access to medical services especially for persons with disabilities. He acknowledged existing gaps in access infrastructure, data collection, as

well as medical personnel training in sign language interpretation and braille, which he attributed to budgetary constraints. Kakamega County is in the final stages of developing a Disability Bill.

The UNFPA will work in partnership with This-Ability Trust to support infrastructure improvement, digital data collection on women with disabilities, and training of health personnel. UNFPA Representative, Dr. Ademola Olajide noted that overall, UNFPA will aim to strengthen the health system’s response to sexual and reproductive health needs of women with disabilities through robust partnerships with counties and implementing partners such as This-Ability.

UNFPA donated dignity kits to women and girls with disabilities in Kakamega and Kisumu counties during the mission.

Climate change is a sexual and reproductive health issue for women with disabilities. 

Kenya, a country in the East part of Africa was vastly a savanna grassland area, with climate ranging from cool and wet in the highland’s areas, hot and wet in the lowland areas and hot and dry in the arid and semi areas. Between 2020 and 2022, 16 of the 23 arid and semi arid areas have experienced a drought, this led to a Presidential declaration of a national disaster in 2021. 

At least 2.1 million people are severely food insecure and adopting irreversible coping strategies to meet their minimum food needs. The counties affected include Kwale, Kilifi, Tana River, Kajiado, Marsabit, Wajir, Mandera among others.

According to the 2019 National Census, 2.5% of women in Kenya had a disability. Stereotyping, stigma and unemployment are some of the challenges women with disabilities face every day. This Ability Trust and UNFPA Kenya  understand these issues and developed responsive interventions from a holistic approach. Our goal was no woman with disability be stripped of their SRR and  dignity because of the drought. We teamed up to donate dignity kits to over 100 women with disabilities in Kilifi and Kajiado County and provide mental health support for survivors of GBV. 

Our experience was that many women with disabilities often relied on informal employment such as farming. In Ganze,  Kilifi county, communities have not experienced rain in 3 years making it impossible to farm.  One of the women in our community meetings,  recounts how they have lacked water for prolonged periods meaning when they get water one has to debate whether to drink, farm or share with the animals. 

In pastoralists communities like Kajiado, the drought has led to increased cases of insecurity that has led to sexual gender-based violence on women with disabilities whose husbands have left their homes in search of pasture for the cattle. Water scarcity has limited access to safe water for drinking and for practicing basic hygiene at home, in schools and in health-care facilities. Health providers in Kajiado also attributed an increase in diseases such as urinary tract infections among women with disabilities.

In pastoralist communities, the responsibility to fetch water is a woman’s task. Most of the time, having to trek long distances and experiencing long queues, this becomes hard for women with physical disabilities. Additionally, when they get to the site, it is not always assured that one will get water. The introduction of eco-friendly dry toilets that used sawdust instead of water, is part of the innovations This Ability has implemented for women with disabilities. 

The culmination of inaccessible infrastructure, insecurity, drought and lack of income  by women with disabilities has seen an increase in cases of boda-boda riders sexually exploiting women and girls with disabilities in exchange for sanitary towels or food supplies. 

In parts of Kajiado that have access to salty water the option of reusable pads as an alternative to curb using dirty linen during menstrual cycle was offered. The pads are safer and minimize risk of leaking hence ensuring the girls continue to access school despite being on their period.

Our Mama Siri representatives in these counties hold regular community meetings to offer mental health support, sexual and reproductive and gender-based violence referrals and access to dignity kits to women with disabilities. 

Lizzie Kiama, Director of Gender and Disability at This-Ability Consulting

LMG: What does “break barriers, open doors to realize an inclusive society for all” mean to you?

Lizzie Kiama: The statement to me means removing all obstacles that prevent access to opportunities for self-development of particularly persons with disabilities. Accessing education, healthcare, employment, infrastructure such as transport and technology, and other basic human rights such as food, shelter and security. In my opinion, the biggest barrier to accessing opportunities is attitude; negative cultural attitudes towards disability in a particular society are the main reason children with disabilities are kept hidden, they then do not have access to basic education and healthcare, they grow up and become adults with disabilities who cannot fend for themselves, becoming beggars or hawkers and doing menial jobs.

I also believe ones attitude has the ability to change ones circumstance, despite being born with a disability or having acquired a disability later in life, I believe we all have the power within ourselves to make life better for ourselves and our families.  Although, it is important to note that it is much harder for the uneducated disabled person in rural Kenya to live a dignified life, only because they live a life of exclusion and discrimination. “Break barriers, open doors to realize an inclusive society for all” for me, only means that there remains a lot to be done. Development organizations working in rural areas on issues such as Education, Health and Economic Empowerment are in a position of power, they can make a difference in many disabled peoples lives if they choose to make a conscious effort at inclusion. If I could address them, I would say to approach the communities they work with and focus on practical, sustainable, inclusive methods. Make sure the disabled children are going to school; invest in informal learning for the adults too. There are a many projects that can also serve to stimulate an individual’s intelligence.

LMG: What is the most important progress you have witnessed in implementing disability-sensitive policies and/or promoting public awareness?

Kiama: I have realized people are not inherently evil; everyone wants everyone else to live a good life, as long as it doesn’t interfere with their lives. With Disability policies, I find that it is a very personal experience, and if you come at it from a human perspective, I have found people to always be receptive, and they are often shocked at how little they know about the Disability world.  My approach to Disability issues is that they are dynamic and can impact you in one-way or another. For example, my Women & Wheels Project is a wheelchair rugby development workshop that incorporates sessions on gender-based violence, health, sexual and reproductive rights targets women and girls of different abilities. It has captured a lot of attention because (I think) by not focusing on Disability issues but on issues that generally affect all women and girls; we are actually tackling issues of Disability in a roundabout way. We are practicing inclusion, and as the women interact and have fun, they are not disabled. They are all women.

LMG: From your perspective, what remaining challenges or obstacles are of highest priority?

Kiama: Personally, I feel access to education for children with disabilities is of highest priority. It is my opinion that tackling issues from the root is the only to ensure we are not always chasing our tails. I also think we need to change our laws to be more inclusive of people with disabilities. After countries that ratified the UNCRPD and enacted it into their laws, we were all hopeful that things would change for the disabled people. In Kenya, for example we have a very progressive Disability Act but there is no enforcement. I think for a law to be passed, there should be penalties that follow, should the said law be broken. The Disability Act for example has a requirement that all organizations reserve 5% employment positions for people with disabilities, this has been in effect for almost 5 years, and yet you can count the number of disabled people in meaningful employment positions. Some organizations remain oblivious to this law yet they are supposed to up to date with the current labor laws. I think if we borrowed a leaf from the American Disability Act, we would see more changes in our society.

LMG: As we approach the post-2015 time period, what actions do you recommend for leaders like yourself to take to encourage support for the dignity, rights and well-being of persons with disabilities and to increase awareness of gains to be derived from the integration of persons with disabilities in every aspect of political, social, economic and cultural life?

Kiama: I would recommend when one is working towards the integration of persons with disabilities, it is important to remember that the ultimate goal is to have a fully inclusive society, this means that we all want people with different abilities to live together and to support each other in accessing opportunities. Political, social, economic and cultural life does not exist in a bubble; we all contribute to each other’s well-being and we should all find a way to exist together. As leaders in the Disability world, we need to find ways of including non-disabled people to further our cause for equality, dignity and justice, we all need to bring our individual talents to the table which can only ensure results and make our work efficient, sustainable and truly inclusive.

Source: http://www.lmgforhealth.org/activities/vulnerable-populations/interview-lizzie-kiama-idpd

Lizzie Kiama founded the Women & Wheels Project to open up wheelchair sports to women and girls both with and without disabilities in Nairobi, Kenya. Through her own experiences as a differently-abled woman, she has great experience working to develop disability-inclusion strategies for organizations. In addition to the wheelchair sports, the project will also incorporate interactive workshops on gender-based violence, sexual & reproductive rights, leadership and empowerment.

Lizzie was first introduced to wheelchair rugby in the United States  by Mobility International USA through a program called Women’s Institute on Leadership and Disability (WILD).  Using what she gained from WILD, plus her experience in the disability field, Lizzie created a successful workshop that integrated both standard and differently-abled women in this unique sport. The hunger for this subject is strong in Kenya, as adaptive sports are rarely available, and when they are, they are generally reserved for men. She is already planning her next workshop in March, and has collaborated with the Ministry of Sports in Kenya, Blaze Sports America and a team of experts that are happy to volunteer their skills to the participants.

“I believe this project will give both disabled and non-disabled women and girls the motivation and drive to pursue their rights” says Kiama, “while also enabling access to opportunities that have been reserved for more able bodies and more often male members of the community.”

The funds from The Pollination Project will be used to expand the project and their ability to reach more people.

GRANT AWARD DATE:  DECEMBER 11, 2013

Lizzie Kiama checks her watch, then glances nervously toward the door. With only 10 minutes left, she begins to worry– what if no one shows up?

Every time she hosts a game of wheelchair rugby, Kiama is seized with these same, creeping fears. “It has been ingrained in my society that disability is a bad thing,” Kiama says. “It’s a negative thing. Disability is ugly, disability is poverty, disability is a lack of education.”

Even in modernized areas of Kenya, buildings lack crucial accessibility features, like elevators and ramps. These physical barriers are compounded by less tangible obstacles, like illiteracy. In the absence of public education, Kenyan schools are exclusive, costly, and primarily located in wealthier, urban areas. Moreover, students with disabilities (when they can afford schooling) are designated to specialized schools, many of which are crowded and insufficiently funded.

“In my country, no accommodations are made,” Kiama says. “So if you’re disabled, you’re destined for failure.”

It is a mentality Kiama knows personally. At 18 years old, she lost mobility in a car accident. Kiama needed a wheelchair during her recovery, but refused to identify as disabled. She didn’t want to be labeled, banished to that marginalized group. She didn’t want to become invisible.

Kiama regained the ability to walk, subsequently marrying and pursuing a bachelor’s degree in business administration through the United States International University. But, upon giving birth to her daughter, Kiama lost mobility permanently, the result of weak joints after pregnancy.

Kiama sunk into depression and that despair, she says, affected her parenting. Resolving to improve for her children, Kiama reclaimed her identity. At 30, she embraced the label she’d denied twelve years earlier.

“It took really looking at myself and accepting that I was, indeed, disabled and that I could look at it as something negative or I could let it be a source of empowerment,” Kiama says.

As a mother and wife, Kiama found her place in society again. Yet, she still missed being active, a private loss. Kenya offers few adaptive sports, and only for men. . Women with disabilities, Kiama says, are left behind at the intersection of gender inequality and disability discrimination.

Unwilling to settle for invisibility, Kiama took matters into her own hands.

And so, in 2011, This-Ability Consulting was born, a firm devoted to helping companies implement sustainable, inclusive business models and strategies. Through This-Ability, Kiama also launched Women and Wheels, a series of wheelchair rugby games followed by lifestyle workshops. In one post-game session, a team of doctors offered on-site family planning services and health screenings. Sports, Kiama says, are “universal,” making them an ideal platform for social change.

Back at the gym, a stream of women and girls (and even a few men) pour in through the doors– a site that never fails to melt Kiama’s heart. Two women are hesitant to sit in the chairs, but Kiama persuades them to try. Once they start playing, their reservations slip away, brushed aside like beads of sweat.

Kiama’s project is still young, but it’s growing. Her work is creating the considerate, inclusive society she’s always dreamt of seeing.

“Whether they are able-bodied or disabled or gay or lesbian, or however they may identify, I want a society that is accepting of them,” Kiama says. “That is encouraging. That is affording the same opportunities.”

She pauses.

“A state where everyone can be good at what they do or can be whoever they want to be.”

The Australian High Commission and This-Ability Consulting hosted a breakfast roundtable on Thursday at the Intercontinental Hotel, Nairobi.

In consultation with the International Labour Organization Global Business and Disability Network, the four hour roundtable included discussions on pertinent issues on disability inclusion in the private sector.

Present were Australian high commissioner John Feakes, Devolution, Planning and Gender Development chair Gloria Ndekei, This-Ability Consullting CEO Lizzie Kiama, AAR Health Services director Maryjka Beckman. 

An Evening with Ashoka Fellows

Ashoka Fellows

It was an opportunity to meet game changers during the Ashoka cocktail held at Concert House, Kilimani last Tuesday.

Ashoka is a global organisation that identifies and invests in leading social entrepreneurs.

The invite-only meet and greet also served as a networking event where entrepreneurs got to share ideas and get to know one another.

Present were Ability Consulting CEO Lizzie Kiama, Oracle Consulting managing partner Joe Githinji and Ashoka Innovators regional director Peris Wakesho.

Imagery, Visibility and Disability

Diviah Awour

Bodies are where we put our theories of social justice into practice. It therefore follows that the categories in which bodies are placed, willingly or unwillingly, need to be subject to careful critique. In a society driven by narrow, visual representations of standards of beauty (for example in media, advertising and popular culture), women with disabilities have been largely invisible. Value is placed on bodies that most satisfy the socially constructed aesthetic, and because disabled bodies are culturally considered an aberration, they fall short and are therefore dismissed. This dismissal escalates into outright erasure because the effect of not being considered valuable means that disabilities are not represented, included or considered for anything. The media, for example, responsible for pushing messages that shape the consciousness of societies, will always choose to play it safe by only aligning their messages to viewer expectations rather than challenging the norm that equates disabled women with asexuality.

As able-bodied women campaign against the traditional view that motherhood should be the ultimate desire of every woman, disabled women advocate for the right to be even allowed to make the choice of motherhood. Being considered asexual, their decision-making regarding family planning is considered invalid, and may even be legally restricted. There have been reported cases of disabled women’s reproductive choices taken away through forced abortion and forced sterilization.

In Kenya, disability comes heavily associated with negative connotations – a result of cultural beliefs that form the lens through which Kenyans first interact with disability, which is then perpetuated as a subconscious bias throughout their lives. Some of these cultural beliefs include the myth that disability comes about due to witchcraft, curses and punishment from God for a sin committed. The effect? Stigma, discrimination and eventually, the disenfranchisement that characterizes the lives of persons with disability. The net of injustice tightens even further for women with disabilities. We face “double discrimination” within a society, both patriarchal and ableist. The issues unique to women with disabilities often fall through the cracks of mainstream women’s rights organizations, due to lack of inclusion and representation within those larger groups.

Increasing the visibility of disabled women and awareness of their sexuality does not equate to a call for the sexualization of disabled women. Indeed, sexualization of the female body continues to be a concern for women’s groups. Mainstream and digital media carry on driving attention towards the body parts rather than the whole of women, counteracting the strides women have made in encouraging respect for the autonomous female body. Without falling into the trap of sexualization, erasure, stigmatization and exclusion must be countered, and the consciousness of society changed, through visibility and by challenging norms that equate disability with asexuality.

As part of This-Ability’s work on increasing voice and creating visibility for young women with disabilities in Kenya, in 2016 a photography series was commissioned, aimed at challenging norms and stereotypes around disability, gender and sexuality. Here, we share ten photographs which explore the need for representation of women with disabilities in mainstream media. The photographs have been exhibited in various platforms both locally and internationally, enhancing the importance of positive imagery of African women with disabilities.

Stella Mwende I am passionate about the rights and inclusion of blind women in societyLydia-Adhiambo Lydia Adhiambo I am passionate about creating awareness on intellectual disabilities in my communityLizzie-KiamaLizzie Kiama I am passionate about increasing access to employment opportunities for women with disabilities in the private sector in KenyaJoy-RehemaJoy Rehema I am passionate about increasing access to decent employment opportunities for women and girls with intellectual disabilitiesJane-WaitheraJane Waithera I am passionate about the rights and inclusion of persons with disabilities in Kenya
Jacinta-OdimaJacinta Odima I am passionate about disability rights and inclusion for women and girls with disabilitiesGloria-AiroGloria Airo I am passionate about the inclusion of women and girls with intellectual disabilities in societyFaith-NjahiraFaith Njahira I am passionate about advocating for genetic and invisible disabilitiesEsther-MbitheEsther Mbithe I am passionate about increasing access to inclusive education for women and girls with intellectual disabilitiesDiviah-AwourDivia Awour I am passionate about increasing access to sign language services for deaf women

By AUGUSTINE SANG

The Labour ministry is pushing for the establishment of a technology hub to produce assistive devices for the disabled.

Labour CS Ukur Yatani says the disabled need to be considered when embracing modern technology to help empower them.

Mr Yatani made the remarks in London ahead of Tuesday’s Global Disability Summit scheduled to take place at Queen Elizabeth Olympic Park in East London.

“We use a lot of money to buy assistive devices for [the disabled] and we want to reverse this. We cannot lag behind in using technology to empower them,” said the CS in a statement.

He said the government is seeking the support from stakeholders, especially the private sector, to put up the technology centre.

The summit is co-hosted by the Kenyan and UK governments.

It is the first ever global summit whose aim is to highlight successes and gaps in disability inclusion as well as make new commitments towards addressing the plight of the disabled.

“We are here to share best practices and we look forward to fruitful discussions on how we can partner with stakeholders to improve on disability inclusion in all sectors of social economic development,” Mr Yatani said.

The summit issues revolve around stigma and discrimination, inclusive education, technology and economic empowerment.

The Kenyan delegation includes officials from the ministries of Labour, Transport and Infrastructure as well as National Treasury.

The ministries are considered key to the implementation of policies related to disability inclusion.

Legislators with disabilities from both the Senate and the National Assembly are also attending the summit.