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.

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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

delegation-of-disabled-women-activists

It was early in 2018, and the 62nd session of the Commission for the Status of Women (CSW) was just two months away. We knew that CSW would be a prime opportunity for young women to influence global priorities. In the Ford Foundation’s East Africa office, we had a particular interest in using it to help amplify the voices of young women with disabilities, who are so often excluded from all kinds of decision-making and activism.

The planning time was short, and logistics were complicated. But driven by the strong conviction that women with disabilities need more opportunity to join forces with other women across the globe (and after a helpful conversation with Lizzie Kiama, director of gender and disability at This-Ability), we felt our way forward. We reached out to FIDA Kenya, the leading major women’s rights organization in the country, and gave them a grant to identify a small group of young women activists with disabilities, and help them get to New York City to participate in the CSW session.

As the largest women’s rights organization in Kenya and a grantee of the foundation’s BUILD program, FIDA was a logical choice for us to partner with. For our part, the foundation had worked to facilitate advocates’ participation in CSW before, and it had been a straightforward process: Once the grant was made, we had only to wait for a report back. But like most organizations in Kenya, FIDA had not in its 33 years dealt directly with women with disabilities. Being a BUILD grantee bolstered their confidence to take on this project, but none of us anticipated the specific challenges it would involve.

Supporting a delegation

In addition to Lizzie Kiama, the women chosen to attend CSW were Janet Marania Teyiaa, an elected member of parliament representing the women’s constituency in Kajiado county; Elizabeth Ndirangu, a member of Kenya’s paralympic team; Fatuma Mohammed, a coordinator with the Northern Kenya Disabled Organization; and activists Joy Rehema Mawia, of the Kenya Association of the Intellectually Handicapped and Farida Nabbania, of the National Union of Women with Disabilities of Uganda.

All these women had disabilities, but at first we did not know what specific accommodations they would need in order to fully participate. When FIDA first spoke to Fatuma and asked her to apply for her visa online, for example, she calmly explained that she had a visual disability and could not do so without assistance. She also lived in a rural area, and could not simply hop in a taxi to the airport.

Other complications were not strictly related to a participant’s disability. Farida was denied a visa by the American Embassy in Uganda on the grounds that she was a young, unmarried, childless woman with no “proper ties” that would compel her to return after the visit. In the end, she was not able to be part of the delegation.

Accessibility matters

Even before we arrived in New York, we began to realize the challenges of accessibility—and how crucial it was to the women’s participation.

In working to reserve accommodations and plane tickets for the participants, FIDA Kenya found that most airlines were “uncomfortable” with idea that five of the women would be traveling with their own wheelchairs, even as checked luggage. Lizzie, who has a physical disability, told me she prefers to travel with her wheelchair because it allows her to be more independent. When she has relied on airplane assistance services in the past, they had deposited her in a corner and left her there until it was time for boarding. On one occasion, she was left to wait without access to bathroom facilities or food. But given the difficulties with the airlines, the women ultimately had to use rented wheelchairs when they arrived in New York.

Information about hotel accessibility was often incomplete or unreliable. And then there was transportation. Hiring suitable ground transportation in New York was expensive. But we figured we could rely on UberWAV, which offers rides in wheelchair accessible vehicles—and if push came to shove, find a taxi.

When we finally arrived in New York—having arranged flights and finally secured accommodation—we faced another unwelcome surprise: UberWAV was actually not readily available in New York. Regular Uber vehicles were not accessible to wheelchair users, and taxis were impatient to pick the next customer—they could hardly wait long enough for us to take the wheelchair out, left alone provide the receipt we needed. Our movement from venue to venue became so complicated that we decided to choose between them carefully, and ultimately cut down on engagements.

It turned out that even UN Women, the body responsible for CSW, did not have a strategy for including people with disabilities. And not all UN facilities are accessible for people with disabilities. So it was not a surprise that very few discussions at CSW focused on disability issues. Clearly, these issues are not under regular consideration, and without the presence of people with disabilities (made much more difficult by a lack of accommodations), organizations and companies of all kinds feel less urgency to address them.

Opportunities for action and engagement

But through this process, the Ford team learned a lot, and the women influenced the conversation. Through a partnership with the Kenyan consulate in New York and contacts at the ministry of public service, we met Kenya’s cabinet secretary for gender, and our governors—who, ironically, it is more difficult for us to meet back in Kenya.

After our meeting, the cabinet secretary committed to push for including people with disabilities in government employment and education polices, to improve access to the Women’s Enterprise Fund, and to help put in place a database of people with disabilities for planning purposes, using disaggregated data. The secretary also pledged to help connect people with disabilities to opportunities for advancement, to push for anti-discrimination laws and policies, and to raise the profile of people with disabilities through participation in sports.

We were hosted by Kenya’s cabinet secretary for public service, gender and youth affairs at the Kenyan embassy in New York.

Leveraging Ford’s connections, we pushed our way into UN Women, where we offered concrete proposals on how to include young women with disabilities in the CSW agenda. We even shared Ford’s disability grant making criteria, to help inform UN Women’s disability strategy. We also met with key women’s rights donors, including Frida, Open Society Foundations, and the Urgent Action Fund, which pledged technical assistance to support the group’s fundraising efforts.

We networked and learned with other women’s rights leaders from around the world, and developed stronger relationships with other women with disabilities. We attended events focused on women with disabilities, and connected with women with disabilities who discuss CSW well beyond the dates of the event. Being at CSW gave us a better understanding of how to engage with its policy mechanisms and UN agencies, and motivated us to learn about new fundraising approaches and opportunities.

What we learned

To start with, we learned that it’s important to understand the scope of an effort like this, to plan well and be realistic about what is possible. It’s important to have proper training to help understand and better meet the needs of people with disabilities. People often feel uncomfortable talking about disabilities, but to be able to provide appropriate accommodations, its crucial to know exactly what people need.

We also know now that we can’t assume that an organization that deals with women’s issues has experience in dealing women with disabilities. And we need to be conscious of the intersecting discriminations women with disabilities experience, and focus on ensuring that they are equipped to navigate challenging experiences independently and with dignity. For this to be possible, we need to plan for accommodating disability as an integral part of any grant, not as an add-on.

I certainly learned a lot about patience and perseverance. But what stuck with me the most was something Fatuma said. “My needs aren’t special,” she told me. “How my needs are met may be different, but they are the same as everyone else’s.” Individually and collectively, these women are challenging norms and pushing to expand inclusion. To support them in achieving such important change, it is clear we will need to challenge some of our own ways of operating and thinking as well.

Source: https://www.fordfoundation.org/ideas/equals-change-blog/posts/what-we-learned-from-a-delegation-of-disabled-women-activists/