Healthcare workers trained to address sexual and reproductive health needs of women with disabilities
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.
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.
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 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.”
“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.
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.
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 society||Lydia Adhiambo I am passionate about creating awareness on intellectual disabilities in my community||Lizzie Kiama I am passionate about increasing access to employment opportunities for women with disabilities in the private sector in Kenya||Joy Rehema I am passionate about increasing access to decent employment opportunities for women and girls with intellectual disabilities||Jane Waithera I am passionate about the rights and inclusion of persons with disabilities in Kenya|
|Jacinta Odima I am passionate about disability rights and inclusion for women and girls with disabilities||Gloria Airo I am passionate about the inclusion of women and girls with intellectual disabilities in society||Faith Njahira I am passionate about advocating for genetic and invisible disabilities||Esther Mbithe I am passionate about increasing access to inclusive education for women and girls with intellectual disabilities||Divia 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.
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.
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.