Host: Welcome to Role Models for Change, a series of conversations with social entrepreneurs and other innovators working on the front lines of some of the world’s most pressing problems.
Lizzie Kiama:
My name is Lizzie Kiama. I am from Kenya. I work primarily with women and girls with disabilities, and we work around advancing their sexual reproductive rights. So we work a lot with changing perceptions around their sexuality and how that has a real impact in terms of the access to quality healthcare that they receive. And we also work directly with healthcare workers, kind of trying to dispel myths and biases around disability, what disability is, what capacity women with disabilities have, the stigma and the discrimination that we all carry and the negativity around disability. So we work around all those things.
Matthew Beighley (interviewer):
Why is there a need for this work? What’s the problem overall?
Lizzie Kiama:
The problem is the high maternal mortality rate among women with disabilities, the lack of comprehensive sexuality education among schools that focus on girls with disabilities. For example, the things that non-disabled folks might take for granted that people with disabilities, women specifically might not have access to. And that has real implications, life and death implications for women and girls with disabilities. There is a questioning of the capacity of women with disabilities to have sexual pleasure, for example, or want sexual pleasure or want a family or have a partner that is deeply ingrained in our culture. And then because that is how we as a culture, as a society socialize around disability, we take those biases into professional spaces like healthcare settings. We don’t think about accessible infrastructure. So somebody in a wheelchair, for example, would not be able to access community healthcare centers with dignity.
It’ll be a case of we’ll carry you inside, beds, for example. The idea that women come in all shapes and sizes and abilities does not play center stage in the healthcare systems in Kenya. And as I said earlier, it is a life and death situation. And the biggest problem is because there’s no… our government has not necessarily placed a huge importance on this community, our Ministry of Health does not collect data on disability. So we don’t know how many women with disabilities go into the healthcare center. And because we’re not collecting this data, we are then not making subsequent financial investments that would address the issue. So in my opinion, it’s a huge, huge problem.
Matthew Beighley (interviewer):
Interesting. I don’t think you’ve mentioned the name of your organization. No, no. But this is great. So it’s a great time to introduce the name of the organization and what your method of approaching… what’s your solution?
Lizzie Kiama:
Right. So I founded This Ability in 2012 as a company, and then in 2018, we transitioned into a non-profit. But my work has always centered women with disabilities because of the lack of investments. From childhood, really, our society kind of perceives, not kind of… our society perceives disability with a lot of negativity. We associate disability with a curse. So as a parent, when you have a child with a disability, the automatic thing is to feel shame and to want to hide and protect the child. So when it is a girl child specifically, there’s very few investments around the life of this girl, and you can see that through the trajectory of her life, access to education, access to employment, access to healthcare, things like that, wanting. So for me and my work, because I identify as a disabled woman, I became disabled much later in life.
So I had access to some of these things, but it’s not the same for when you’re born with a disability, even when you acquire disability later on. So my work has been to center women with disabilities and to guard that with a lot of jealousy, make investments towards their lives, provide them opportunities for empowerment, lobby with different stakeholders, those who work in education in the community, to just dispel some of those myths that we hold so dear around disability and ensure that our government is prioritizing communities of women with disabilities. And then after we started as mainly focusing on women with disabilities, centering them and amplifying their experiences, so that that can inform policy, but informing policy in a way that is community-led as opposed from a top-down approach. So if we don’t have quantitative data, can we use qualitative? Can we take videos? Can we have women with disabilities talk about their experience in healthcare, their experience growing up, their experience with leadership and the barriers they’re in? And use that to influence policies, influence spaces such as the Skoll Forum for example.
And we’ve gotten a lot of traction with that approach. It’s kind of inverted, but for me, I think it’s extremely strategic because the idea is to have governments that are responsive to their citizens. But for a very long time, women and girls with disabilities and their issues, it has been seemingly easy to sweep those issues under the rug because of the fact that they’re more likely to live below the poverty line. They’re more likely not to have a voice, not to push back. So we ensure that our groups of women have that. They can speak back, they can push back, they can articulate their issues, they know the legal frameworks, and they can use those in their private and public spaces to kind of agitate for change.
Matthew Beighley (interviewer):
Is there a win that you’ve had, a case study or an impact that you’d want to share? I know you talked about policy. Is there a policy that changed?
Lizzie Kiama:
Yes. So in 2015, Kenya… so there’s this legal framework, a global legal framework of course started by the UN, the Convention on Elimination of Discrimination Against Women. It’s a big policy, international policy, legal framework. But countries sign and ratify and say that we will adopt this framework in our laws and in our practices, and every three years, countries are expected to report back to the UN. So Kenya in 2015 was required to report back on the status of women in Kenya, what advancements have been put in place. And so when we saw the Kenya report to the CEDAW committee, there was absolutely no mention of women and girls with disabilities as expected. So I was part of a team that coordinated voices of women with disabilities across the country to put together an alternative report to say, this is what the Kenya government says, but this is our reality and across issues around sexual reproductive rights from the laws that we have in place, to practice, to access to justice, to how the legal framework even questions our legal capacity, how that is problematic, and this is the real situation.
And we had case studies and things like that. So we lobbied and we had that go to the CEDAW committee. And when Kenya was up for review, they were asked questions based on our shadow report, our alternative report. And the government of Kenya was required to respond, questions that we would not have been able to ask ourselves. And they were given two years to show what they were doing around women and girls with disabilities. And in those two years, we could see specific policies around healthcare, reproductive healthcare that had specific language on women and girls with disabilities. So that was incredible. Of course, that has not translated into tangible financial investments, but the fact that it is part of our policy, our reproductive health bill, which is a law, has components of disability access and other organizations, it had a ripple effect because even international organizations, civil society organizations, they rely on these laws which kind of form a precedent for them to operate under.
So they now are forced to. We are now dealing with a bias that we all have internally. That, for me is a much bigger issue. But in terms of laws, our engagement with the CEDAW legal framework had real tangible results. For me as myself and as an organization, we wanted to explore public perception around disability and to what extent this has a negative connotation. So we put up a billboard, several billboards around menstrual health. This was in 2018, I think, 2018. So we had billboards in the city center featuring young girls with disabilities, and they had a major one was a girl that did not have fingers, and she was holding a menstrual cup. And it was at the time that menstrual products were not… even Always, which is a big product, was using blue ink to portray menstrual blood. So there was a whole thing about period positivity.
That was a whole conversation that was going around. And so we had fake real blood, so fake blood on the cup, and she was holding it, and it was a big billboard. Kenyans went crazy. Oh my God. Kenyans went crazy with their bias towards disability, and we could see the gravity of the issue. And it was a whole conversation on social media, different platforms and people… some leaders of civil society organizations that we thought would understand where we were coming from. Absolutely, biases came out. And it was super interesting to see that those that you imagine would be your allies, really when push comes to shove, they go back into what they know and how they’re socialized. And so it was a whole debate questions around why did they have to use a disabled girl or a disabled woman? Why couldn’t they send their message with a non-disabled?
It’s more palatable for us to look at a non-disabled person, but a visibly disabled person on media there was conversations around, this was part of gender-based violence, and we were perpetuating the same stigma and that my organization was male-led because there’s nowhere women would come up with such a campaign. And then there was another side of the conversation that was like, but have we really thought about how we design menstrual products and how we consult or conduct market research with groups of women with disabilities? Do we, in our little spaces, do we engage with groups of persons with disabilities to ensure that we get their insights and that we are designing inclusive products and services? So it was really, really interesting to see. I remember our donors, I had already given them a heads-up that if you fund this project, this is what we’re going to do with it.
And so there was also a debate in their office, and there was a push and pull that this is not what we stand for. And so after that, I remember the CEO of one of the leading menstrual cup companies wrote to me and said, “Pull it down because it’s affecting our brand negatively,” and we’re like, “There’s nowhere that it says it’s your cup.” But the reality is, how does somebody with no fingers use a menstrual cup? She can’t. And that’s the whole point. We don’t think about this demographic when we are designing. And that’s true for everything that all we are trying to say is include women with disabilities, hear from them. And so as a result of that, we had a bunch of menstrual companies that make menstrual products come to us and want to hear from women and girls with disabilities to try and think about innovating different products because they realize they’re very specific in the market they design for. And so that was quite interesting, and it was a fun project for me. Yeah.
Matthew Beighley (interviewer):
Oh, that’s great. I like that. And again, please, if you don’t want to do this, we can skip it. Are you comfortable talking about your own story? I know you said you became disabled later in life. I think that’s your entry point. So it’s very interesting.
Lizzie Kiama:
Yeah. So I had an accident when I was 18, a road accident, and I became disabled as a result of that. And it is interesting because I never identified as being disabled. I remember, first of all, when I had the accident, my mother did not allow me to feel sorry for myself. I was not allowed to feel sorry for the fact that I had lost my legs. It was like, “Okay, we pick up from the little whatever it is that you have left. We deal with that.” And my girlfriends tell me much later that she used to get out of the hospital room to cry and come back. I never saw her cry, and it was a big deal because my legs were my favorite part of my body, but maybe you can edit that. But then when this happened, I was always extremely resilient I think.
As a child, I didn’t know how I was going to navigate not being physically active because that was a big part of who I was. But then I also… I’ve always had the ability to be creative and think about alternative ways of doing things. So when I became disabled, it was okay, Lizzie had had an accident, and I’m recuperating and I’m on the way to recovery. And when you’re 18, the journey towards recovery is a lot faster. And so I spent maybe two to four years different stages with different mobility aids from completely reliant on a wheelchair to being upwardly mobile, two crutches, one crutch, and then ultimately no crutch. And then I got married and oh, yeah, my mother ensured that as an 18, 19-year-old, you have to do everything that you would have done. So I was always a very stubborn, rebellious child, and she did not want me to fall back into, “Oh, I’m feeling sorry for myself, so I’m not going to do anything. I’ll stay indoors.”
She’s like, “If you need to go out with your friends, I’ll drop you. Let me know what time to pick you up.” So my social life as a teenager, I did not want for anything. I was still allowed to do the things that… of course, it’s not as fun when your parents are encouraging you because you want to do the complete opposite to what they want. But anyway, that helped me in terms of, I never felt I had to settle. I always knew that I could do whatever it is that I set my heart and my mind to. So I got married, dated quite a bit, then got married. When I became pregnant, I then started noticing all this time, I’m not identifying as being disabled. It was just, “Yeah, I had an accident and this is who I am now.” So never identifying as having a disability.
So when I got pregnant, I started now to notice that the pregnancy is weighing me down a little. It’s difficult to walk. But then most importantly is when I went to have my baby, and we went to one of the biggest hospitals in Nairobi, a private hospital and they were a little not sure, especially when they found out I am an amputee, and they’re like, okay, but they would not dare say it to my face. But I saw that, and I had been seeing the same doctor throughout my journey, my pregnancy journey, and the fact that I had injury on my pelvis did not raise any alarms. According to him, he thought I would have a natural birth and encouraged me to think about the same. So when I went… first of all, I was overdue. My daughter did not engage. So when we went to the hospital, I was induced, and over 24 hours later, it wasn’t progressing.
But then my daughter’s heartbeat was getting weaker and I was getting extremely tired. So we had to have an emergency C-section. And then after, it was touch-and-go, my pressure was crazy. I lost a lot of blood. And when I came out of it, my baby was fine, but my health plummeted and I was extremely weak and I couldn’t walk again. And so I’m a new mother. I’m a young mother, I can’t walk. This is not my reality. This is not what I wanted. And now I had to go back to recuperating all over again, learning how to walk all over again. And I absolutely did not want to use crutches. And so my husband was like, “But why? Why don’t you want to use crutches?” And I don’t want to be the focus. I just want to blend in. I don’t want to stand out. And when I use crutches, and I’m a mother, it’s not a sight that is common.
I had not seen many disabled mothers in my social circles, so I didn’t want that for myself. I just really wanted to blend in. And by that time, my mother had passed, and I remember she kept saying, “This accident did not happen to you for no reason. You can carry it and you can carry it well, but you need to find out what it is.” And all this time, this word, this label disability, is something that I don’t want to… I didn’t feel the need to identify with. So when my husband was like, “Okay, maybe you need to think about being comfortable with using mobility aids,” and then I was like, “Okay, maybe I need to find out why I’m uncomfortable,” because I didn’t know. So I went on a whole journey. I did a lot of research around disability, what the community is like, what the issues are, what the history of the movement is all about, and where do I see myself.
And I was like, “I found my thing. I think this is it,” because I felt like a lot of… I resonated with so much that was being talked about. And so I started applying to disability organizations asking if I could intern or volunteer, whatever. I just needed to be immersed in this community that I hadn’t been a part of. And so one government agency asked me to volunteer with them. And so I worked with them for six months and I worked in their employment department. And after six months, I said, “Okay, I have a business degree. I think I could do more. I had worked in private sector before and maybe there’s a way that I could continue try and work with private sector to see how they look at disability inclusion and if it’s an issue for them and what could be the possible… what would they need to ensure that they’re one, employing persons with disabilities, but also how can we get their media, their advertising, their marketing departments to also think about people with disabilities.”
So that’s how I started. And then I found the company, as much as I would get meetings and we’d have conversations, no one was willing to put money towards the issue. And then I found nonprofit organizations. Ford Foundation, for example, was doing a lot of work on reproductive health. And at that time, I was mobilizing women with disabilities to play wheelchair rugby. So we’d get together and play wheelchair rugby. And it was just a space for me to hear from them what their experiences were and if there was anything that I could relate to it. And I found that there was a lot of similarities, especially around the idea that you can express yourself freely. So fundamental freedoms, things that you might take for granted, but communities of women and girls with disabilities found that there are a lot of restrictions around that.
Anyway, so I found bigger international organizations, nonprofit organizations, were interested in what I had to say and were more willing to put money towards it. So they’re like, “Okay, we don’t know much about this topic, but are you willing to write us a report around it?” And so I started going into the communities either with a wheelchair rugby or just getting opinions, experiences, and hopes, dreams of women with disabilities, what is the environment now and what would an ideal environment look like and use that to present to different funders.
And then they encouraged… And then of course, the Seed Out advocacy opportunity came up. And then after that, there was a lot of encouragement, “Why don’t you start a non-profit and go deeper with this work that you’re doing,” because my work was very out there. It was not disability advocacy in the traditional format. I wanted to have fun. I wanted to do things differently. Hence, let’s play wheelchair rugby. Let’s do advertising. Let’s take pictures of women with disabilities celebrating their sexuality because a lot of that was not… we didn’t have that. Yeah. So that’s a little about my journey.
Matthew Beighley (interviewer):
Final question here. What’s your vision of what you’d like to see happen in your world? What’s the world you’d like to create?
Lizzie Kiama:
I would like to live in a world where women with disabilities, African women with disabilities especially, were treated with a lot more respect. I don’t see that a lot. I don’t see that a lot. I think, as I said, because I truly believe because of the realities of inequality in the world, there’s a hierarchy. And women and girls with disabilities are, in my opinion, at the bottom of the list. And because we know or we have accepted as a society that women with disabilities, it is deeply ingrained in all of us that women and girls with disabilities, especially African women and girls with disabilities, they have traditionally been on the receiving side of charity, and there has not been a demand for their value addition. It has been, “You receive and yeah, we are not expecting much out of you.” That comes with a lack of respect.
And even when… And I think that lack of respect or lack of expectation towards this community, I think that is the reason also why governments, organizations have not prioritized the issue. Because when you downplay barriers that are very specific to a certain demographic, and you imagine that it’s not a big problem when we know, for example, statistics say there’s over a billion people that have a disability globally. So it’s big problem. In developing countries, we know that at least 15% of our country’s population is disabled. And yet we keep talking about the same thing. So we have our bias towards disability, how we are socialized around disability is a big problem, and it has real implications. So I would love to exist in a world where we were dealing head on with the bias. Disability is part of the human experience. We’re not going to eradicate disability anytime soon.
And to be honest, I don’t think that needs to be what we strive for. We need to understand that we are all human beings that exist in this space, and these need… for all of us, and we need to move beyond the hierarchy. We need to move beyond the titles and the different ways we imagine values placed on different communities, on different people. It might sound simplistic, but I don’t believe as much as, yes, putting money towards the issue is great, but I think it goes a lot more deeper. We really need to get to a space where we are questioning our values and how those show up for one another and question who we are as human being and how our humanity shows up for each other. Yeah, of course, money is great. It would change a lot of things. But I think the issue that I’m working around is a lot deeper, a lot, a lot deeper, and we are not having enough real conversations about bias and how that influences a lot of things.
