In July, Kenyan media reported the death of a mental health advocate, Susan Njoki, that happened within a mental health hospital, with a postmortem showing that she died from manual strangulation.
A 2021 study titled ahuman rights assessment of a large mental hospital in Kenyanoted that legislation that allows coercive treatment and physical abuse, exemplify some of the harsh treatments that persons with mental health conditions have been forced to endure.
In a press statement, the Federation of Women Lawyers in Kenya noted that the handling of Ms. Njoki, leading to her death, violated the provisions on consent to treatment, the right to protection from abuse, the right to participate in treatment planning, and the right to dignity and autonomy.
When it comes to the law and protection of rights of citizens, including the right to life, as a country we have positively progressed over the years. Kenya’s new mental health law for example states that every person with a mental illness has the right to protection from physical and mental abuse. The new persons with disabilities law states that persons with disabilities include persons with long term mental impairments which also covers people with mental illness.
In that regard, the disability law states that every person with disability has a right to respect for his or her physical and mental integrity and the right to security of the person including his or her survival, liberty and protection. It states that every person with disability has the right to be protected against all forms of abuse in all settings, at all places including, home, hospitals, and any other place which inhabits any person with disability whether temporarily or permanently – this includes psychiatric institutions.
While we would argue that the presence of laws should inhibit all violations against all people, including those with disabilities, we acknowledge that it is not always the case. We may also argue that when rights are violated, we have the option of the justice system, yet when it comes to people with disabilities, it is not always an easy process. An International Commission of Jurists report titled Access to Justice for Persons with Disabilities in Kenya: Progress and Challenges states that despite positive developments such as the enactment of the Persons with Disabilities Act (2025) which features key provisions on equality and non-discrimination, legal capacity and access to justice, still deficiencies and inconsistencies in other key legislation continue to hinder access to justice for persons with disabilities.
The Mental Health (Amendment) Act (2022) for example retains provisions that allow for substituted decision-making and involuntary detention, practices that are inconsistent with the rights guaranteed to persons with disabilities under the Convention on the Rights of Persons with Disabilities and the African Disability Protocol both of which Kenya has ratified.
A case of lack of political goodwill?
In her opinion, Sally Nduta the CEO of the United Disabled Persons of Kenya noted that while Kenya has enacted the Persons with Disabilities Act and adopted the Disability national policy, the Finance Act 2025 contains no dedicated budget or funding pathways for implementing the new act or the persons with disabilities national policy. A case of lack of political goodwill?
Laws and policies are very useful in offering guidance and direction towards meeting a certain objective. But when we are not guided by what the laws and policies, that we have created ourselves say, then we are called to reflect collectively as to why that is the case. It beats logic for example that there are laws and guidance on protection for rights of people with mental illness, yet so many are experiencing rights violations, sometimes leading to death, as for Susan Njoki.
I offer that a return to Ubuntu must guide us.
Even with laws in place, we must be guided by a value system where we share and show compassion, more so for those likely to be marginalised by the system; where we value human dignity and humanity, where we value justice and collective care.
In the second meeting under my PFP Fellowship, I met the project participants in the company of Mildred Omino who took us through a conversation on transformational leadership. Leadership is a critical topic for young women with disabilities. Drawing from my own experiences, I did not view myself as a leader for many years, I think until my 30s. The thing about seeing yourself as a leader or even ‘feeling’ as a leader, tremendously changes how you interact with people around you, or even how you view yourself. Seeing myself as a leader has increased my levels of confidence and this is what I like to pass across to young women with disabilities. That no, you don’t have to wait until you are 30 to ‘be or to feel as a leader.’
What was the turning point for you; That moment when you took a bold step to take up leadership? What discomfort led you to take up leadership? Are questions that Mildred posed to the participants. From the responses, it is clear to see that many young women with disabilities are leaders in their own rights. These young women are rearing to go, and this is the leadership spirit that must be nurtured among young girls and women with disabilities.
“When I was in High School, the tendency was to exclude me from communal activities, with the reason being that I was a disabled girl,” said one participant. What did she do? She had to find solutions to the exclusion. It meant for example she had to insist and take part in communal activities like cleaning the classroom as others, or find other roles to play but not just accept to be denied a chance to participate.
“I had to challenge norms,” said yet another participant. “It is the old story, they see me with a visible disability and they lower expectations about what I could do, I had to change this, I started creating awareness, saying that disability is not inability,” she added.
At this point you start to notice that often, the discomfort driving these young women with disabilities to get into leadership, is to challenge assumptions. Remember the data that says women with disabilities are underrepresented in different spaces? We may need to be careful about only referencing leadership in highly visibilised spaces like political spaces. Girls and young women with disabilities are exercising leadership in different ‘unseen’ spaces and it is from these spaces that we must nurture their giftings, for them to access other ‘more visible’ spaces.
“I excelled in my studies. It was important I do this,” said another participant. “My discomfort was that all that my peers saw was my disability. But I needed them to think of me in other ways. As a clever girl. And so, I excelled to cover the fact of my disability. I was appointed as a school prefect. Many of them came to me for advice,” she added.
The discomforts are many. And I think for many activists with disabilities, struggling to fit in, in a not so welcoming world, the discomforts become our source of strength. Our bridge to leadership.
“Look at stigma for example,” reflected Mildred. “It is a bad thing, yet it is often the driver of change. We speak against it, we begin to see change, we become change makers. This is leadership.”
And the stories shared reflected this. It was the participant, using a white cane, being told time and time again that she looked old because she ‘used a walking stick.’ And at this point she had to take the onus to educate her community about the white cane. It was the participant who was bothered on why parents were hiding their children with disabilities, her taking it upon herself to visit homes in her community where she knew there were children with disabilities and speaking with the families about why they must not hide their children.
Whereas this does not endorse people with disabilities taking up extra roles in addition to the burdens they already face in communities, it is an acknowledgement that there are high levels of discomfort that are driving girls and young women with disabilities onto leadership platforms. This leadership aspects must be recognised and nurtured.
“We cannot disentangle leadership from our personal experiences,” noted Mildred.
“We cannot sit and wait for opportunities of leadership to find us, we must find them,” said a participant.
We also had a chance to watch a short Ted Talk by a young Kenyan leader who both inspired the participants and encouraged them in their leadership aspirations. It was especially powerful for the speaker to reiterate that leadership is not a position nor a title. It is about service to humanity.
Some ideas around transformational leadership
A concept whereby leaders and their followers raise one another to higher levels of morality and motivation. Leadership is not only transactional where the focus is on meeting the lower level needs of safety, physiological and safety need; it is also transformational where attention is paid to higher level of needs such as motivation and esteem. Therefor transformative leaders must show commitment, motivation and rally their followers to demonstrate ownership of their course!
Characteristics of transformative leaders
Creative – Innovative, hardworking, thrive in complexity and ambiguity.
Interactive – They communicate effectively, engage authentically, make their followers to be needs aware and motivate them.
Visionary – They know where they want to go , their purpose/ goal . They articulate their goal clearly in a more compelling way.
Empowered – Help people to become who they want to be/ help them grow.
Passionate – They believe in their course even in the face of numerous failures. Show extraordinary commitment in what they truly care about.
This was such a lovely discussion and I am so inspired by the commitment of the participants. And I think as we discuss leadership, we are opening our minds to new ideas.
New imaginings.
“Disability is not all about struggles, failures,” said a participant. “It is about inspiration. It is about achievements.”
We acknowledge that there are many discomforts. The stories of our lives run concurrently with many instances of discomfort. And as Mildred asked, What was the turning point for you; That moment when you took a bold step to take up leadership? What discomfort led you to take up leadership? We remain alive to using the stories of our lives as a guiding step into leadership. And it is okay.
On 30th August Dr Dean from the Kansas University Center on Developmental Disabilities and I had an opportunity to meet 30 women with disabilities who are part of my (Professional Fellows Program on Inclusive Civic Engagement) PFP Follow on project titled ‘Women with Disabilities Leading.’ The project is based on data that shows that women with disabilities are underrepresented in leadership and decision-making spaces. Therefore, my focus is on working with the 30 women with disabilities on developing self-advocacy and leadership skills with the overall goal being to assist my project participants, both individually and collectively, define their advocacy and leadership goals and create a path to achieve them.
The women hail from 4 counties in Kenya including Kisumu, Nairobi, Kakamega and Mombasa counties. They have diverse characteristics because I recognise the diverse identities that we all occupy, hence I tried as much as possible to speak to these diversities. This regards diversity in age, geographical location, education levels, income status as well as diversity of disabilities. One of the representatives is a sibling to someone with a disability.
The introductory meeting was for the participants to meet each other, albeit virtually, which would also support them to develop connections with each other. This is especially important because we are all part of a WhatsApp group where continued engagement is ongoing. I am happy to also be supported by colleagues from the Kenya Network of Women and Girls with Disabilities including Elizabeth Mang’eni who is an alumna of the PFP program.
In our first meeting, the participants shared one area in their life where they wished they could bring change in, or lead on. The responses were as diverse as the members. There were similar threads with the main one being the desire of the participants to address the rampant issue of stigma and discrimination that they face as women with disabilities. Other themes included access (or lack) to inclusive education, employment, addressing sexual reproductive health and rights of women with disabilities, addressing issues of gender-based violence among others.
The next step will be a meeting where the participants will name specific advocacy ideas that they would like to accomplish within this period and beyond. I am also intending to have a virtual training on leadership in November with the participants in addition to offering continuous technical support in their advocacy work. Later on in January 2025 when Dr Dean joins me physically in Kenya, we shall offer a training to the participants that will focus on goal setting and action planning using the Self-Determined Learning Model of Instruction (SDLMI), a multi-step problem-solving framework.
What have the participants been up to so far?
One of the things that colleagues and I from the Network are actively doing is linking the participants to available opportunities where they can advance their advocacy. We have recently supported a few participants to attend two advocacy workshops in line with their interest.
For example, Faith expressed her interest in work around Sexual Reproductive Health and Rights where she received support to attend a one-day workshop on the theme. This is what she reported:
‘I have had a wonderful and interesting day. Full of insights, knowledge and most importantly getting to listen to other peoples experiences especially on SRHR and GBV….people go though a lot, from women, persons with disabilities to widows who sometime are forgotten and young women as well. It made me realise that there’s still a lot to be done, like we need to raise our voices even higher in order to ensure these gaps are closing in and no loophole is left open. …I am glad for the opportunity. I got to make friends and meet old friends as well.
There are other participants who expressed their interest in climate change conversations, and we supported them to attend a two-day workshop on climate change. This is what Flominah had to say,
“From the forum…I have got inspired to go back and push my education to be in a better place to represent from a point of experience and knowledge as well.”
Looking forward
Whereas the PFP Follow on project has timelines to accomplish certain set objectives, I recognise that working with the participants, mentoring them, is something that will last longer than the project frame. PFP has served as a very strong motivator for this process which is an amazing thing.
Representatives of organisations of people with disabilities from over 40 African countries recently gathered in Nairobi in a conference organised by the African Disability Forum titled Persons with Disabilities in a Post-Pandemic World: Redefining the Inclusive Development and Humanitarian Agenda in Africa. The African Disability Forum is a regional organisation that seeks to strengthen and unify representative voices of Africans with disabilities, their families and organizations.
Among the remarkable things discussed in the conference and which showed the advancement of the rights of people with disabilities in Africa is the recent coming into force of the African Disability Protocol (ADP). Adopted in January 2018, the ADP officially entered into force on 5th June 2024, following its 15th ratification on 5th May 2024. The ADP offers a framework to safeguard the human rights of persons with disabilities on the continent. It is hoped that member states of the African Union can use the ADP to formulate disability laws and policies to promote rights of over 80 million persons with disabilities in the continent.
Yet as the hundreds of delegates convened and celebrated this momentous occasion as well as the call to all AU countries to ratify the protocol, one of the recurring views was the little implementation there is of laws and policies that are meant to advance rights of Africans with Disabilities.
The continent is home to more than 80 million people with diverse disabilities who are confronted by diverse barriers to their inclusion in communities. ‘We have good laws but little implementation,’ is a sentiment that resonated with most delegates. Examples are rife across the continent. Inaccessible buildings; inaccessible public transport, children with disabilities missing out on quality inclusive education, women and girls with disabilities facing violence in their communities; less opportunities to work and employment in the open labour market; inaccessible voting processes; less involvement in public and political spaces are among many other ways that people with disabilities have been pushed to the margins in their own communities. This is inspite of laws that are said to be progressive and inclusive.
The African Disability Protocol, therefore, while being as a ray of hope for millions of people with disabilities across the continent; with the hope that governments will protect and promote their human rights, many are still sceptic. Many countries for example have ratified the Convention on the Rights of Persons with Disabilities (which forms a basis for the ADP), a UN treaty meant to protect the rights and dignity of all persons with disabilities, yet we are not seeing much in terms of the advancement of the same rights that these conventions and treaties are meant to protect.
In the month of June for example we were shocked by the murder of a young child with albinism in Tanzania. We have cases where children with intellectual disabilities are killed at birth. Human rights violations are experienced across the continent. Its many other things. It is people with mental health conditions and psychosocial disabilities locked up in psychiatric facilities and prayer camps; it is the stigma and discrimination rampant across the continent that results in children with disabilities being hidden away in their homes; children not attending schools; people with disabilities discriminated against in work and employment; people with disabilities not being appointed into decision making infrastructure despite what laws say among others.
It therefore makes meaning when people across the continent say, ‘we have good laws, but these are not implemented.’
Yet we remain optimistic. That as the curtains fall on this first of its kind Conference that was primarily led by people with disabilities themselves, we hope that laws and policies that exist work for all people with disabilities. That countries across Africa may listen to the cry of people with disabilities and answer to their call, of not being left behind.
In recent weeks, Kenya has experienced unprecedented protests led by young people demanding better governance by the country’s leadership. Unfortunate deaths have been witnessed, and indeed, the hope that justice can be served because one life lost, is one too many.
As in most situations characterized by conflict, a dynamic that must be faced is the acquisition of disabilities by the population. As would be expected, numbers of persons with disabilities will rise owing to more people acquiring disabilities. We have seen it in the news. People losing their limbs because they have been shot; a lot of exposure to trauma that would result in deep and intense mental distresses. The mental anguish can be long lasting because there is a lot of uncertainty and hopelessness at a situation that does not seem to get any better.
We live within a context where disability is not often looked at positively. We still view disability from a sense of lack or diminish, a sense of inability. It is the case that often we have heard the saying that disability is not inability, where people with disabilities have been forced to reiterate that having a disability does not mean that a person cannot make any contribution in their community.
What is real also, is that disability is and can be expensive. Disability is and can be an isolating experience. More awareness, therefore, must happen in this area, of the experiences that our loved ones will go through, in the face of an acquired disability.
Whereas this does not take away the immediate pain and desperation of acquiring a disability, it may be as a point of solace to people who acquire a disability, that it will get better with time. There will be difficult moments when someone feels desperate about their new situation. There are people who will go through depressive periods because they cannot do things that they previously could. Others will wonder whether they will go back to the people they used to be. There may be numerous doctor visits; there may be need to purchase different medicines, there may be need to attend counselling sessions and these may be draining, both financially as well as emotionally.
One thing that may be quite useful in navigating this new journey would be finding a community of people that have had experiences of disability. Often time people with disabilities belong to different support groups where they share their experiences in a safe and non-judgemental space. Finding such spaces may be a step that would support someone with a newly acquired disability to navigate their new experiences. Many of these groups can be found online.
Certainly, acquiring a disability can be devastating to say the least. But it doesn’t have to be. There is hope, that even with a disability, we often achieve our goals, with appropriate supports around us. Rehabilitation goes a long way to support individuals to do what they were able to do before a disability. Where it is not possible for this to happen, there is the probability to discover new things about us. It is documented that the great musician Julio Iglesias’ professional football career was ruined when he was involved in a car accident. It is during his healing process that he discovered his musical talent. We also know that through the use of assistive devices and technology, it is possible to engage in more activities as people with disabilities than it was previously.
Importantly however, community support remains one big aspect in supporting persons with disabilities to meaningfully be a part of their communities. Communities that are devoid of stigma and discrimination are one good way to support persons with disabilities to navigate their experiences. Our communities must understand that having a disability, whichever disability, does not make an individual lesser; rather, it is another identity among many other identities that we possess.
I write this piece, acknowledging all young people of Kenya. I am pained by a situation that appears so desperate for many young people agitating change in our country. Life as is, can at instances feel so hopeless, and sometimes we feel lost. I hold all young people of Kenya dear in my heart. May the future be kind.
Women with disabilities face significant barriers to leadership and civic engagement (UN DESA, 2018; UN Women, n.d.). A 2017 survey by United Disabled Persons of Kenya (UDPK) of 105 women with disabilities, ages 15 to 59, from six counties in Kenya found that although women know their rights, they struggle to realize them due to inadequate policy implementation (UDPK, 2018). Additionally, there are few platforms for them to advocate for themselves, even locally.
The report identifies several challenges hindering their participation in governance, including lack of accessible and timely information on county governance structures and procedures, limited disability knowledge among county officials, and insufficient skills in disability inclusion and mainstreaming.
The underrepresentation of women with disabilities in governance and other decision-making spaces is a significant issue that must continually be addressed. Despite some advancements, women in general have less access and less power within decision-making systems. For women with disabilities, these hurdles are even greater. There are many variables to this, but it is widely documented that women with disabilities face multiple barriers to their participation in community. This has been acknowledged by article 6 in the Convention on the Rights of Persons with Disabilities (CRPD) which has been widely ratified across the globe.
In my follow-on project under the Professional Fellows Program, I proposed to start an ‘incubation like’ program with 30 women with disabilities who have engaged with the Kenya Network of Women and Girls with Disabilities to explore the concept of leadership. The idea is that through a continued follow-on process, we can explore different ways that women with disabilities can practice leadership in their everyday spaces and indeed occupy diverse decision-making spaces, meaningfully.
The 30 women with disabilities, include mostly young women, with diverse disabilities, from grassroots and urban settings; diverse education backgrounds; across different counties in Kenya where we have presence as the Network with a priority of 4, Mombasa, Kakamega, Kisumu and Nairobi.
I will use my own experiences and expertise accumulated over all these years. I will work closely with my US mentor as well, and also tap into networks that I have built over my many years in advocacy.
What I intend to do
Collectively identify goals and aspirations of the women with disabilities within their communities.
Using both group and individual goal- setting exercises, chart a path towards realizing these aspirations.
Engage the ‘When everyone leads’ principles (listed below) in a training meant to highlight leadership as an activity within everyone’s reach and which would also act as a catalyst to reaching group and individual goals.
Leadership is an activity, not a position;
Anyone can lead, anytime, anywhere
Leadership starts with you and must engage others
Leadership is risky
Leadership is about our toughest challenges
Throughout this process, we will hold each other accountable; working collectively together to realize our aspirations within our communities.
What I learnt during my Fellowship and how it fits into my overall project idea
While at Kansas University Center on Developmental Disabilities, I attended meetings that were facilitated by KUCDD in several communities for an ongoing research project on transitioning into employment for youth with disabilities. The community meetings were very useful to expose me to ideas around community goal setting and self-determination.
Community meetings are key to establish what a community is good at and what is needed to be worked on. Community members map their own community strengths and where they need help. Together they choose a way they are going to solve the problem. It is a live example of nothing about us without us, the mantra of the disability movement. In this case, together with the women, we shall work to find ways to address underrepresentation within the various spheres of decision making and how to work towards that.
I also attended a leadership training at the Kansas Leadership Center that presents the concept of leadership in a powerful way. The ‘When everyone leads’ Program seeks to awaken within each person that they can practice leadership anywhere and everywhere. A leader is not just someone in authority. Leadership is not a title. It is an action. Small actions that propel communities to realize their aspirations.
In the tailored trainings that I intend to develop, together with my mentor, I shall explore using the key principles from the ‘When Everyone Leads’ training to find some solutions to the underrepresentation in decision-making spaces in Kenya.
Incorporating my learnings into my project action plan
The thinking towards my project has been greatly influenced by insights on self-determination as a goal driven process, as well as seeing leadership as an activity that can be seized by each and every one. Where the focus is not just on ‘the leader or the person in authority so to say’ but where each member of the team can see themselves as being leaders, and where ‘the leader’ is also tasked with making leadership less risky for their team.
This has inspired me to have a broad objective of enhancing leadership and self-determination of women with disabilities towards supporting them to address issues that are of importance to them. I am more motivated to work with the women to recognize that each one can make a difference in their communities; and to reflect on how to be more strategic in addressing the things that they want to change.
In terms of Measuring impact: We shall meetafter an agreeable time frame with members to assess impact. This will entail going through the goals set at individual and group level and collectively determining if these have been met or not; as well as collecting recommendations for the way forward.
On Sustainability: As a member of the Network who has benefitted from the PFP program, I commit to give back my skills, passion and expertise to the Network for atleast 2 years. It means I will be available to follow up on needed support to participants as regards attainment of goals and working on these ideas for the long term.
I will also engage Network members to have a Leadership Pillar within the Network’s new strategic plan (2025-2030) which would ensure that collectively the Network is intentionally fundraising for this pillar. I shall also endeavour to work with participants to draw up a mentorship plan where I can support quarterly leadership meetings where I would invite different speakers to engage with the participants. I shall also keep alive the connections I have made during the Fellowship and find further ways on how I can keep linking the participants to available and relevant opportunities to advance their leadership skills.
We are sitted in a restaurant in Lawrence, Kansas, for lunch. I am meeting some team members who include self-advocates from KUCDD (Kansas University Center on Developmental Disabilities). Among them is Brad Linnenkamp, a long-time leader who previously received the “Achievement Against the Odds Award” from President Bush for overcoming obstacles in his life and assisting others to achieve independence. Why am I bringing this early up in my narration?
As we settle to eat Brad says that someone has offered to pay for his food order. This is a good gesture and as I am thinking about it, I ask Brad, ‘from which place do you think the stranger offered to pay for your meal?’ I asked Brad this question because I recalled another time that me and a colleague self-advocate delivered a training. When my colleague, a great leader, she has cerebral palsy, finished delivering her session, everyone clapped. A good gesture. The audience did not clap for anyone else, before the self-advocate. I did pose the question then, from what place did the claps come from?
And so, as I ask Brad this question, I can imagine the answer from miles away, ‘the expectations on people with disabilities are quite low.’ That despite achievements and milestones people with disabilities have made and keep making, expectations are still low.
‘There are people who think a person with a disability is there to be helped. They may see me as a wheelchair user and their first instinct is to help me,’ said Brad. (Colleagues in Kenya have encountered this, one had a stranger want to pay their bus fare. At times it can be the bad opposite, where some colleagues have narrated that they walked into a restaurant, and they were asked to leave the place because they were seen as beggars).
Now, helping people, including people with disabilities, is not a bad idea. But we are alive to the reality that for people with disabilities, the connotation around ‘help, charity’ does not always come from a ‘place of power.’
‘I helped a person with a disability, this is a good deed and God will surely bless me’ ‘I am not a very good politician, but I actually bought a few wheelchairs for children with disabilities, and this makes me a good person, I helped them.’ I hope you catch the drift, dear reader.
“I still feel that many people have very low expectations on people with disabilities,” says Brad. And I agree that this is true. True for a country such as the United States of America, and true for a country such as mine, Kenya.
Has anything changed over the years? What does Brad think?
‘My parents wanted me to be my own person,’ recalled Brad. He recalled being the only person with a visible disability in his elementary school through to high school. Brad remembers occasions that he would be away from home when he had to attend occupational therapy sessions. Over a couple of years, he would be gone for about six weeks each time. “I had a sense of being away from home even at this young age and being around others like me with disabilities,” he recalled. These memories stuck with Brad and he remembers these moments as being beneficial in his growing up journey as they were opportunities he spent with other children with disabilities.
“I cannot prescribe how children with disabilities should be raised,” says Brad. He knows that there are parents who are very protective of their children with disabilities. He acknowledges that there are many reasons why this is the case, but adds that his viewpoint is that everyone, more so children with disabilities, should be supported to be as independent as possible. “Barriers faced and levels of support that people with disabilities need, differ, but in every instance, children and persons with disabilities should be supported to make their own decisions and be independent,” Brad says.
I love trying to educate people, says Brad. My mantra is, ‘No matter what obstacles you have to overcome, you need to find your strength in things you are good at, what you enjoy doing.’
This is what Brad has done over the years. He loves being out in the community. He says that for him, being around people has been vital.
And indeed, there is so much that he has done. He has worked at KUCDD as an Assistant Researcher; he has led and contributed to nationally funded research focusing on Supported Decision Making, self-determination, and community engagement for people with intellectual and developmental disabilities. He worked for the Self-Advocate Coalition of Kansas for 20 years. He sits on many state and national committees including the Disability Rights Center of Kansas, Employment First Commission, and the Self-Advocate Resource and Technical Assistance Center National Advisory Board.
A focus on high expectations? Maybe similar expectations?
In the community meetings that I attended, we heard many people talking about how communities have low expectations on youths with intellectual and developmental disabilities. “We need to change the narrative,” says Brad. “High expectations should be the norm.” We have however spoken more about this, and I asked, ‘must it be high expectations? Do we want to put a higher threshold for people with disabilities?” At some point we did say, ‘similar expectations.’ That the expectations communities have on children and persons without disabilities should be the expectations that they have on children and persons with disabilities.
On this topic, Brad shares what families have told him. One said, “I could see how I was raising my child (with a disability) differently. I started thinking that maybe I needed to raise my expectations, I needed to build more supports into this process, for myself, for my child…I started raising my expectations.”
We also spoke about segregated settings for persons with disabilities
Brad has experienced work in a sheltered workshop, places that employ mostly people with intellectual and developmental disabilities, in segregated settings. These have received criticism across contexts even in my country as they don’t give people with disabilities a real choice when it comes to work; as well there are loopholes when it comes to a minimum wage, and you realise that persons with disabilities working in such sheltered workshops are hardly paid a minimum wage. There is now more emphasis on supported employment.
I started advocating for myself
It is during his years working in a sheltered workshop and unhappy with the circumstances that Brad started advocating for himself. With time and as Brad could not get a job that he wanted to do, and with the encouragement of a friend, Brad was challenged with the question, ‘what do you want to do?” With the help of his friend who worked in a different residential program, Brad came up with a job description where he was hired as a part time worker and what he was doing was to teach advocacy skills for others with disabilities. To support them to speak for themselves. To start asking, ‘how can services be improved here, how can services be more accessible to people with disabilities, what do we need to do to make change happen, how do we make work environments better, how can people with disabilities get jobs in the community?’
I couldn’t do a full time job (A profound moment for me)
As the years passed Brad said that he realised he couldn’t do a full time job on top of what he had to deal with his disability. I found this to be profound. Personally, I have been working from home a number of years now as it is easier to handle my anxiety from the safe confines of working from home. But I think it is profound that as persons with diverse disabilities we can have such space, not to be judged to be any lesser, but to be offered space to say what we can and what we cannot do. Rather than someone else prescribing to a person with a disability what they can and cannot do. Thank you Brad!
In time, Brad got into the Self-Advocate Coalition of Kansas (SACK) for 20 years where they did amazing work as SACK both in the advocacy side and legislative side. They developed advocacy groups in the State of Kansas, they pushed for things to get better in their community including accessibility, better access to services; working with over 1000 self advocates. One really important piece of legislative advocacy they have done is that recently, and through the leadership of Kathy Lobb who worked for the Self-Advocate Coalition of Kansas for 21 years, a bill, Kathy’s Bill, was passed by the Kansas Senate and this bill would give people with intellectual and developmental disabilities preference in hiring, promotion and retention for state government jobs.
There is so much to write about our time together with Brad. It may go on and on. But Brad says that even with much progress, there is still more that needs to be done. Remember the stranger who offered to pay for Brad’s meal? When people with disabilities have to live to the reality that despite so much achievement, society may still see them as ‘people that need to be helped.’
Brad says that he feels there is still stigma out in the community. Even when it comes to sexuality, Brad feels there are people who think that person with disabilities do not have the same feelings as those without, especially in relationships. He however says that people have a right to use their bodies in ways they see fit. He recalls suffering abuse in a relationship and what he has done is educate himself about sexuality, to recognise signs of abuse in a relationship and even within SACK, they have done campaigns on sexual abuse within relationships. He acknowledges that abuse, neglect, and exploitation take place all the time and he is glad that as self advocates they get to talk about these realities hence offer each other support even for persons with disabilities with different gender and sexual orientations including those from the LGBTQ+ communities.
Brad owns his house, through a State funded program that made it easier for him and other persons with disabilities to own homes. Brad makes his way around town in his wheelchair, he also has an accessible van. At university there is an accessible van for his movement during work hours. I mention these last points, acknowledging the progress that the US has made and how to a large extent persons with disabilities can live independently in their communities. I would be unfair to make comparisons with my own country Kenya, considering the Global North and Global South realities; but I would hope that Kenya, and much of Africa can aspire to take our countries to a level where persons with disabilities can meaningfully thrive in our communities.
NB. Thank you to Dr Evan Dean and the entire team at KUCDD for all the support received during my PFP Fellowship, including all moments shared with Brad.
In 2023, three colleagues sent me the open call to apply to join the Professional Fellows Program on Inclusive Civic Engagement in Kenya, Tanzania, Uganda, and Ethiopia, a program of the U.S. Department of State, administered by the Institute for Community Inclusion (ICI) at the University of Massachusetts Boston in partnership with Humanity and Inclusion (HI).
It was not the first time that I had seen the call. But it was the first time three colleagues who know me and my work sent it my way and said, ‘Liz, you should apply for this.’ It had been a long way coming. I had applied to a couple of fellowships and opportunities such as scholarships, but these did not materialise (cue, never give up 😊). But somehow, I felt ready for this call. I knew I had to apply. It was so strong in my mind that I would be picked. I think most of the time we know. We know when we are ready. We know when we are not. So, when I took the leap that day to apply, when I got selected as a semi-finalist, at the back of my mind, I knew I was ready.
But it was not always the case.
A little history. I started blogging in 2011. I was a better writer than a speaker. I was shy, awkward, fearful. I wrote about it in a national newspaper. I did not know why I was the way I was. I needed answers. I sort of got the answers when I got a mental health diagnosis in 2009. To make sense of my experiences, I think it took me the 2 years until 2011 to start exploring story telling using my own experiences. When I look back those years, there was a lot of yearning in me; I was quite dreamy. An entry in my blog:
I still believe that my dreams, those built high up in the mighty skies will come to pass. (Nov 28, 2011)
Life happens. We don’t live life with the intention of telling our own stories. Years pass. We do things, small here, big here, and sometimes we look back at the steps we made. Living with anxiety, sort of took many of my dreams away, I tend to think. The thing with anxiety, is you try to live within its confines. You do not want to rock the boat. I remember many times I honestly thought I would not amount to much, meaning that I had dreams which I thought I would never achieve.
My 20s especially I look at them as years that were extremely slow. They may have been the years of my take off. But well, I found myself in my 30s. And I often say what saved me (mostly) was this group that I joined –the Users and Survivors of Psychiatry in Kenya. It was many of us, young professionals with different mental health diagnoses, and we sought better. We wanted more and at times we felt that the mental health labels were holding us back. But we did so much together. I have written about it in my blog and how many of us, with the promise of the Convention on the Rights of Persons with Disabilities, how we started advocacy, at national level, how we also got into global spaces. You know, looking back, I see how what could have been a dark period in my life, became the reason that I have achieved the much that I have achieved in my work as a disability rights advocate.
A few days ago in a meeting with organisations of persons with disabilities, a young man told me, ‘Liz, it is because of people like you that I got into the movement — (as a young man with a disability). And I thought to myself, ‘this is big’. So many people held my hand over the years, and I am so glad that I have held the hands of others over the years too.
And now, as a Professional Fellow on Inclusive Civic Engagement, I am thankful, to so many people, and specially to the Kenya Network of women and Girls with Disabilities through which I based by Fellowship project on.
I am thankful to everyone that makes the Professional Fellows Program on Inclusive Civic Engagement in Kenya, Tanzania, Uganda, and Ethiopia possible.
This week, I join the 11th session of the World Urban Forum (WUF11) being held in the Polish city of Katowice. WUF is a global conference on urban development under the auspices of the United Nations Human Settlements Programme (UN-Habitat). It engages national governments, local governments, urban development professionals, the private sector, academia, stakeholder groups and civil society.
Certainly, the engagement of persons with disabilities and their representative organisations in decisions and processes guiding urban development at all levels is critical to hold governments accountable, address discrimination and remove accessibility barriers which sustain inequalities and exclusion of persons with disabilities. Persons with disabilities, like any other marginalized group in the community, must have a say in the decisions and plans that impact their lives and the future of their communities.
My participation, together with other delegates of the disability caucus to WUF11 is coordinated as part of the official delegation of the General Assembly of Partners (GAP) Partner Constituent Group of Persons with Disabilities (PCG). It builds upon the achievements and set-up from previous forums, including WUF10, where the delegation was coordinated by the World Blind Union in cooperation with CBM Global, International Disability Alliance, Cities 4 All Network, and UN-Habitat.
Indeed, WUF11 provides a unique opportunity to accelerate the engagement of organisations of persons with disabilities in mainstream discussions about urban policy and practice, allowing space for collective advocacy with a cross-disability focus along strengthening the commitments to specifically reflect Article 9 of the CRPD in the progressive realisation of accessibility.
Through the week, we shall participate in numerous events, both virtual and hybrid format. These will include high-level sessions, thematic dialogues, roundtables, training events, networking events, providing a range of engagement opportunities.
Launching the Journal of Public Space
I especially look forward to our launch of the Journal of Public Space Special Issue on “Universally Accessible Public Spaces for All”, comprised of research articles, case studies and viewpoints from across academia, city professionals, city managers and officials, urban planners, and civil society, including organizations of persons with disabilities (OPDs), older persons representatives, self-advocates, and artists from across the globe. I am really excited that a Viewpoint I authored also features in the Journal.
Inclusion in the urban century
Certainly, cities continue to shape every aspect of global development, including the way in which fundamental human rights are promoted, protected, and realized. Today, more than half of the world’s population live in cities, 15% of them being persons with disabilities. Recent examples of global crisis like the Covid-19 pandemic, reminds us that much remains to be done to address discrimination and accessibility barriers which sustain inequalities and exclusion of persons with disabilities in urban areas.
To realise a sustainable future that is inclusive of and accessible to all in line with the Convention on the Rights of Persons with Disabilities (CRPD) and the Agenda 2030, participation of OPDs in urban development processes at all levels is indispensable.
Building back better after Covid-19 and helping to ensure that disability inclusion, accessibility and universal design are integral components of urban development and how our cities and communities are governed, developed, and designed is critical.
I look forward to a productive week, more special for me, especially that we can also talk about how underrepresented groups of persons with disabilities, including those with psychosocial disabilities, can be involved in these discussions that are key to shape how our cities and public spaces are inclusive and accessible to all persons with disabilities.
My appreciation goes to Hannes Juhlin Lagrelius, World Blind Union, for his insights in the development of this piece.
Identity: To understand my advocacy for rights of persons with disabilities, it is important to understand first, what my motivation is. Why I do what I do. What is the story behind?
For me it starts with identity. I self-identify as a woman with a psychosocial disability.
People who experience mental distress identify in various ways. A little history: When our representative at the global level (World Network of Users and Survivors of Psychiatry (WNUSP) were negotiating the Convention on the Rights of Persons with Disabilities (CRPD), the preferred term to refer to us and our experiences was, ‘persons with psychosocial disabilities’. This term however was not then widely understood, WNUSP agreed then to use the more generally understood term of mental impairment.
Persons with mental impairments include users and survivors of psychiatry who experience or have experienced madness and/or mental health problems and/or are using or surviving, or have used or survived psychiatry/mental health services, as well as those who are perceived by others as having a mental disability/impairment. Important to recall that the CRPD states that persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.
At the beginning: My advocacy within disability rights began in the year 2009, firstly within the realm of mental health. As one who has a lived experience of a mental health condition, and having studied print journalism, it almost came naturally that I would use my talent in writing to express what I was going through, which slowly had me going into advocacy, advocating for access to mental health services.
Formation of Peer support groups: I shared my story in a newspaper about my experiences having a mental health condition, and through this, I found a membership organization called Users and Survivors of Psychiatry that worked with persons with mental health conditions/psychosocial disabilities. It is here that I then started doing my advocacy for rights of persons with psychosocial disabilities. With the team, we were instrumental in the formation of peer support groups in some counties in Kenya. Peer support groups are now commonly spoken about and I take pride in the fact that USPKenya indeed pioneered this practice, something that is indeed useful for the inclusion of persons with psychosocial disabilities in our communities. At USPKenya we contributed a lot of discourse around advancing the rights of persons with psychosocial disabilities, something that was not widely done. The link to some of the reports that we contributed to is: https://www.uspkenya.org/reports/
All disabilities: Whereas for many people disability is visible, as persons with psychosocial disabilities, we had to work twice as hard to also bring focus to those disabilities that are not immediately apparent to the eye. These include people with psychosocial disabilities or mental health conditions. It was important for us, that for our needs to also be seen within the wider context of disability, we had to be within the disability movement, and not in (mental) health. Therefore, with the support of the International Disability Alliance, through the auspices of USPKenya, I went through a training on the Convention on the Rights of Persons with Disabilities, which supported my advocacy to be within human rights based foundations. Since the year 2016 therefore, I have done my advocacy within the larger disability movement, using my journalism and love of writing background to create awareness on disability and the rights of persons with disabilities.
Using the media: As a disability rights advocate, most of my work has been within the realm of awareness raising and putting focus on the rights of persons with disabilities. I have done this in numerous ways. I have used the media primarily to write on the issues of persons with disabilities. Print media started publishing me at a time that there was not much writing around disability. Indeed, it is possible to see now that there is a lot more materials carried in our media on disability. I am so glad to have been among the people that began the art of using mainstream newspapers to speak to the issues of persons with disabilities. The link to some of the opinion pieces in the Daily Nation: https://nation.africa/kenya/elizabeth-ombati-145908
There have been success stories. I remember this young man with disabilities who had applied for a job to the Public Service Commission, four times with no success. When he shared his story with me, it formed the basis of an opinion piece I did https://nation.africa/kenya/blogs-opinion/opinion/ombati-use-data-to-accord-persons-with-disabilities-their-right-to-work-491240 calling upon duty bearers to indeed use data to accord persons with disabilities their right to work. It filled me with so much gladness when later the young man informed me that he finally got the PSC job. Whereas I may not entirely attribute this success to the opinion piece, but I think we must always recognize that when something is talked about, there is change that happens. That is why advocacy happens. To create change. Hence I always take pride in the fact that I have continued to use my talent as well as my lived experiences, to bring to focus the issues of persons with disabilities and try to make our communities more inclusive.
I have written much more around disability inclusion for diverse organisations and media houses and I have had persons with disabilities write to me asking for supports and I have linked them up to relevant places which inspires me to continue doing what I do.
Employment for persons with disabilities project: My advocacy is also partly the reason that I got work in a UK Aid funded project known as Inclusion Works that is about trying out innovative solutions to support persons with disabilities to find and retain work within the formal sector. Working within this project, working with employers and talking to them on the needs to employ persons with disabilities as well as getting to understand the real situation of persons with disabilities within work and employment, are all things that continue to bring to my focus the need to keep talking about disability inclusion.
Persons with disabilities face enormous barriers to realise their rights to work and employment. this not only takes away their dignity but also results in their being further marginalized in their communities. If there is one thing I would wish to take out of this award indeed, is that more and more of us are talking about how we eliminate barriers that exist that prevent persons with disabilities from realizing their rights to work and employment. It is a topic dear to my heart. More so the fact that for many years I could not hold down a job, but until I was afforded supports at my workplace, then it has been easy to hold a job, which has resulted in me doing all this advocacy work, something that I may never have done had I not myself got a sense of satisfaction that comes with having work and being independent.
I have also been involved in trainings to persons with disabilities to deeply know and use the Convention on the Rights of Persons with Disabilities in their advocacy, recognizing that unless we are talking about human rights based interventions, persons with disabilities will continue to be looked at from charity and medical perspectives as opposed to being included within their communities as rights holders.
My continued vision: I continue to do my small bit in ensuring that my community is inclusive of persons with disabilities. Society must be able to see disability as an identity, to eliminate barriers that hinder the participation of persons with disabilities in their communities and to be able to support marginalized groups to come to the center as opposed to further driving them to the margins. I will continue to not only use my media advocacy but also my own personal spaces to challenge ableism.
Ableism shows itself over and over again and it is the main reason that persons with disabilities continue to be stigmatized and discriminated upon. With my partner, him, with a more visible disability, we continue to face, and to challenge this daily ableism, with hopes to make society more aware, and also more inclusive.
For example, we have gone to a medical facility, steep stairs that we must climb, we ask, ‘why can’t you find an accessible place, we are told, ‘but this is the only place we found an office’ and we challenge them and say, ‘no, if you had everyone in mind, you would not have given your business to a business owner who does not care about accessibility.’
Political meetings with no sign language interpreters, in physically inaccessible places; we go to supermarkets with no designated parking spaces for disabled people; we go to churches with no ramps to get into church; looking at the area of livelihoods recalling that a huge percentage of persons with disabilities are in the informal sector, a sector that has been so hard hit during the pandemic and thinking of all persons with disabilities who lost their sources of livelihoods, who have slid back into poverty. And how this is going further to marginalize persons with disabilities if there is no state support.
Disability inclusion for me, is personal. It is so personal that all I do, I pray and hope that it makes life a lot better for a person with disability. It is so personal, that when I see a girl with a disability on the road playing with her friends, it fills my heart with joy to know that now more and more parents are not locking up their kids in the houses for fear of stigma. That more and more kids who are not disabled, are exposed to other kids who are disabled and that kids can learn difference. That kids can know that being different is fine.
It fills my heart with pride, that when we are out in the hotel with my partner, and someone’s child loudly asks their mother, ‘what is wrong with him,’ and that instead of the mother feeling embarrassed, that she may explain to her daughter, that some people may need support walking and that it is ok.
We need communities that embrace difference as part of human diversity. Disability as part of human diversity. This is why disability inclusion for me is so personal.
I hope that being nominated for this award would be able to also support me to make further connections with people who would also propel this vision I have forward, a vision where we have less and less barriers for persons with disabilities, and more and more inclusion for all groups of persons with disabilities.
(written for the DIAR awards nomination 2022. To vote visit: https://diarawards.com/vote-here/ Diversity and Inclusion PWD Inclusion Champion Award)
Elizabeth Ombati 