Phylis Mbeke is the founder and Executive Director of Women Spaces Africa, a feminist, disability-led organization based in Kenya. Women Spaces Africa works towards bridging the gap that girls and women with disabilities experience while accessing sexual reproductive health and rights. In this interview, Phylis Mbeke, who is a woman with disability, spoke with Blessing Oladunjoye about her work and the numerous impacts on the lives of women and girls with disabilities in Kenya. She emphasizes the importance of inclusivity, persistence, and the need to centre disability rights in the fight for SRHR, especially in regions where girls and women with disabilities face double discrimination. She encounters numerous challenges in a male-dominated space. She received an award from Women in Global Health, for driving impact at the grassroots level.
Blessing Oladunjoye: At Women Spaces Africa, what components of women’s health do you focus on, which one is your forte?
Phylis Mbeke: As an organization, SRHR is our focus which means we target girls with disabilities innovatively. We are trying to teach the girls about their rights as girls and women with disabilities. As you know in Africa, disabilities sometimes may not be fully embraced and people don’t really know much about disability and sexuality. So they assume that we are asexual or we are hypersexual. A lot of research shows all this. So we end up being at the receiving end, being violated, being abused, for example; not accessing contraceptives on a timely basis, the way we should; and not accessing information in traditional ways the way our friends and our peers would access it. So at Women Spaces, that is what we try to focus on, bringing information on sexual reproductive health and rights closer to the girls. This includes information on abortion since people with disabilities might not be able to know where to access this information. So in our sessions, we want to target and include this information as part of sexual reproductive health information so that they are able to get it fully like their peers without disabilities.
Blessing Oladunjoye: You are addressing a germane issue, women generally encounter different issues in accessing SRH service, and women with disabilities experience more and doubly disadvantaged, first on the basis of gender and on the basis of disability. I’ve heard instances where a Blind pregnant woman went to the maternity clinic and was accosted by a health worker who asked who got her pregnant. It is perceived that because you’re disabled, you shouldn’t be pregnant, and all of that. So working around issues of safe abortions, and reproductive health rights for women with disabilities, is it a daunting task?
Phylis Mbeke: Yeah. What you’ve shared are our common realities that will show up in a clinic whenever women with disabilities appear in the hospital for prenatal testing. Someone will be like, my goodness, who did this to you? We have the choice to parenting, we have the choice to make decisions. And they assume sometimes we have been sexually abused because that is very common. However, sometimes we plan to get pregnant and sometimes we decide to have families just like our colleagues. So those experiences are quite, I’ll say, dehumanising. When a health provider asks you who did this to you, it’s very dehumanising and you can see very well that statement reflects that I as a woman with disability, is not allowed to have sex or they have assumed I do not have sex. So from their statement, you can see the assumption that someone must have violated me and we see the dynamics of abortion coming in different ways.
For example, if a woman or a girl was violated, got pregnant, and turned to a health provider and said I was violated and I need an abortion, services of abortion should come in automatically. However, we have seen health workers telling the girls, why do you want to terminate this pregnancy?
You are very lucky someone raped you and now you’re pregnant. Who do you think would have made you pregnant? If it was not for this man who raped you? You are very lucky, And we see the dynamics of abortion are coming in.
On the other hand, we see some health providers because they have seen that I am pregnant, and they volunteer to offer abortion services even if abortion is restricted. This is simply because they feel why should I give birth to another child with a disability like me? And so the dynamics of abortion among women with disabilities keep evolving.
However, we have seen even girls and women with disabilities being forced to have abortions, even when they do not want to. So for us at Women Spaces, it is to have a human rights perspective and train beneficiaries, that as girls and women with disabilities, we have the right to decision-making to parenthood. To have a child and have a family just like our fellow friends, and have the right to abortion too.
Equally the same according to the human rights framework that says that a woman or a girl has a right to abortion if they do not feel that they want to carry that pregnancy to termination. So we make this information accessible to those who require it, during our monthly sexuality conversations or abortion dialogues, depending on the intervention that we are having, we’ll train and incorporate this information into the curriculum. The availability of medical abortion according to the WHO guidelines. How is the procedure for example, for the medication pills, when to call a doctor? How to know that? For example, sometimes you may take the medication and you need to repeat it, you can see your physician or maybe you can try it again, then go see a physician. So making this information readily available for them, keeping in mind that we are three to four times more violated and sexually abused. So sometimes you see that these services are so our interventions are geared towards, for example, having an abortion doula among ourselves. An abortion doula is a person who is able to walk through the journey of a girl during the abortion when she’s self-medicating. Normally we call it self-care and see that this girl or a woman has taken, the pills has had support during this time and has had a successful abortion. Those are the kinds of interventions that we are trying to do if a girl needs the pills, and for example, she’s not able to access the health providers or the pharmacists. So womenspaces, for example, will bring closer, the pills to her. We have champions who will get the medication and bring these pills to the doorstep if she’s not able, for example, she’s in a wheelchair or she needs a guide or she needs privacy and she does not need other people to know.
Abortion is contentious and not many people perceive it to be right.
Blessing Oladunjoye: So you’ve talked about what roles you play, and I think that talks about how you’re addressing some of the gaps that women with disabilities encounter in accessing safe abortion. Apart from safe abortion, maybe there are other reproductive health services that you think women with disabilities encounter certain gaps. So I want you to talk about those gaps that they encounter.
Phylis Mbeke: Yeah. One of the biggest challenges we encounter is the information gap. If, as a woman with a disability, I do not have information, I’ll not create a demand. So the organization creates safe spaces on a monthly basis to come and discuss different issues concerning sexual and reproductive health. So we’ll have, for example, information on contraceptives. And why are we creating these spaces? It is because these other spaces for us to get information, might not be friendly to us and may not be accommodative to us. For example, another mainstream organization might be giving similar information. However, me being a deaf woman, they may not provide a sign language interpreter, or me being a blind girl, they may not have accommodation to give me a guide. Being a wheelchair user, they do not have a provision for a guide. So these are the barriers, accessibility barriers to information that girls from the target areas that we are in, would face.
So for us at Women Spaces, our interventions are inclusive and have accessible needs so that we mitigate the gap that other mainstream organizations will not have. So in our organising, we have sign language interpreters, we have provision for girls in wheelchairs to be brought home by their guides, girls who are blind to be brought by their guides, and we take care of this extra cost of the guide so that they are able to get this information.
In month one, we are able to work together with the girls on the journey of where they can get disability-friendly services when it comes to contraceptives. Month two, for example, will be on sexual and gender-based violence. We tell them what to do to prevent them from being violated and where they should turn to when they are violated. Should you be able to go to a health provider, report to the police station, and take medication accordingly? So that, for example, you’ll not get infections, you’ll not get unplanned pregnancies, and so on and so forth.
Month three, for example, will be health relationships. So what we are doing is making sure whatever their fellow peers are getting in the mainstream movement, girls and women with disabilities are getting the same SRHR information. So for example, the month will be on STIs and diseases, talk about HIV, talk about STIs, talk about for example, how culture and community are shaping everything regarding HIV and AIDS and so on and so forth. So another month we’ll talk about another topic in regard to, for example, health relationships. So these are the other SRHR information that we continue to target in our intervention that our girls are not able to access in the community.
Blessing Oladunjoye: Fantastic, thank you so much for your in-depth response to that. You’ve talked about how you create more like a safe space for women with disabilities who are unable to access these services within the hospital or health facility, and they need some form of privacy, or they need some form of aid, and how you bring them to women’s spaces. Do you also engage health workers or service providers?
Phylis Mbeke: Yeah, so to add on that women’s spaces in our interventions, we also target health providers and remember, health providers are the people we turn to in case we have a crisis, we are coming from informal settlements, so they are our first priority to turn to. So Women Spaces has been able to train health providers on disability, and etiquette on disability-friendly services so that they are able to know how to address girls and women with disabilities when they come to their clinics and want to access sexual reproductive health services. Normally they have raised the issue that they are not trained on how to address disabilities well in medical schools. So sometimes when girls come to them, they do not know how to approach them. They have myths and misconceptions surrounding disabilities.
However, when we engage them, they acknowledge that there is a gap and we have been able to train them on how to address disabilities. And so for us to know that this has taken place before we train the health providers, we send mystery clients so that we can assess their attitudes towards disabilities and then after the training, we’ll also send mystery clients again, to see whether whatever we taught has been of impact to them. And this is how we are able to know that we are having disability-friendly health providers. So, health providers again continue to be a target in our interventions.
Also, we continue to engage the community members themselves, because community members think that girls and women with disabilities are just there and they can be abused and taken advantage of, community members are the perpetrators anyway. So we engage the community and sensitize them on the sexuality of girls and women with disabilities. We sensitize them that we have disability rights. We sensitize them that it is a violation to rape or sexually harass a girl with disability simply because she has disabilities. So we tried these different pathways so that we are able to mitigate the preference of SGBV or the denial of rights that are being faced by girls and women with disabilities.
So I’ll take this opportunity to say Women Spaces has produced the first braille material on abortion targeting blind girls.
I can say that we brag that in Africa we have the braille material on abortion according to the WHO guidelines. So we take pride in that. We also take pride in working at the intersection of disability and abortion because those two may sometimes not come along together. Know that, for example, people with disabilities, sometimes we may feel when we talk about abortion, people want to do away with us. So it is a very contentious issue. However, Women Spaces brings a human rights framework to abortion issues.
Blessing Oladunjoye: Great, thank you. In your work, what are some of the challenges that you have encountered so far?
Phylis Mbeke: They are numerous Blessing. So Patriarchy remains a key issue in our organizing. As much as we invite girls into our spaces, we have gatekeepers who may think that Women Spaces is not sharing the right information or why we are empowering girls and women with disabilities and yet they are using them for their own benefit. For their own benefit, I mean, we are seeing a lot of gatekeeping when it comes to empowering girls and women with disabilities. The disability movement continuously is still dominated by men. I’m not sure about your country, but in Kenya, it still continues to be highly dominated by men so even us as a women-led organization, trying to put our best foot forward is a challenge. So a lot of persistence and resilience are needed in our work.
The other challenge is funding. Some funding donors have not identified this niche, this unique work that we are doing. So we still continue to look for resources and we are open to resources that share the same objectives and goals with our work.
The other challenge sometimes we see is we have very low literacy levels among girls and women with disabilities, even breaking down the information. So girls not knowing their rights and being patriarchy, misconceptions, we have swallowed all those things. When we are training girls that this is a right, they do not understand and they are still not sure about their rights and still giving other people to be their right holders, when they are supposed to be their right holders, themselves. As much as we’re empowering them, we are still seeing that sometimes not all of them, but others still want other people to make decisions on their behalf just because as they have been brought up, that is what they have been normalized to. Those are some of the challenges we are seeing.
The overall challenge is that the myths and misconceptions surrounding disability are still very present. It will take a long while for us to bash those myths and misconceptions surrounding disability, sexuality and rights. The other challenge we may see is, I think those are the very common ones that are persistent to us.
Blessing Oladunjoye: You talked about how patriarchy has affected a lot of what you do, what role does religion play in all of this? Because we’re a very religious continent.
Phylis Becker: Yeah, religion comes with the anti-choice movement, to really pull down the progressive laws that we want to see on sexual and reproductive health and rights and abortion being a right. So religion is a key factor to us. They used to refer us to be part of the antichrist movement and really try to brainwash us that these progressives, laws and policies, are there to finish us or to end us as people with disabilities. So most of the time we use the eugenics lens that you see that the abortion laws are there. For example, they do not respect the rights of persons with disabilities and they are targeting disabilities.
And when I go and cross over to the mainstream movement, religion continues to be a stronghold of unprogressive laws. Religion continues to be a backlash even in the mainstream movement. When it comes to abortion laws, they have a lot of propaganda, they have managed to brainwash the community about how their laws are progressive. So even in Kenya right now, as much as we have a slightly progressive law, we are seeing now, even in the new regime when the anti-choice movement and religion want to see whether we can have a referendum and see what can happen. Trying to sneak in and push forth their agenda because they are seeing loopholes that cannot take advantage of the new regime.
Blessing Oladunjoye: Great. Thank you so much. So, despite all these new challenges, what has kept you going?
Phylis Mbeke: Despite these challenges, what has kept me going is the passion. So, every year we see over 500,000 women die due to unsafe abortion. Blessing, in Kenya, these are the statistics that cannot be ignored. Unsafe abortion is among the leading causes of maternal mortality and morbidity in sub-Saharan Africa. So it is an issue that cannot be ignored. We cannot turn a blind eye towards it.
When you see women dying because of this, as a woman, you feel that today that woman has died. It could have been my mother, it could have been my sister, it could have been my daughter, it could have been my friend, it could have been my auntie, it could have been anyone related to me.
And for me, as Phyllis, I say I’ll not wait until it is me. I’ll take caution, I’ll preach the gospel, and I’ll mitigate where I can as the rest continue mitigating, to reduce the number of deaths of women who die due to unsafe abortions.
Let us have women die due to other natural causes, like their fellow men, but let us not have women die due to unsafe abortions.
And yet we can avoid this death. When a woman dies, she has died, we’ll not see her again. She’s a mother, she’s a partner to someone else, she’s a daughter to someone else. Why are we allowing women to die because of unsafe abortion? And yet we can avoid this death? I feel it is unfair and I feel it is unfair to women that they are dying. We are having deaths of women that we can prevent. And I’ve taken a deliberate move that I’ll prevent, where I’m able to prevent, and the rest will do and will change the world. And we’ll see these deaths coming down. So as a woman with disability, as a woman generally, I feel it is unfair for women to die because of preventable causes. Let us do something. Let us reduce this death. Let us do something.
Blessing Oladunjoye: That’s really emotional, talking about how many lives we lose. And it’s just better to keep doing something instead of losing those lives because once a woman is dead, she’s totally gone. So what are some of the key achievements you have achieved so far?
Phylis Mbeke: Wow. I think some of the key achievements I think I’d share. We produced the first braille abortion material. Yeah. So far, we have been able to train 40 health providers on disability-friendly services and disability etiquette. In our organizing, we have been able to reach over 500 girls with information specifically on medical abortion, among other sexual, and reproductive health information. We have made sure that information on abortion has reached them. We have been able to see over 100 girls with disabilities directly and indirectly accessing medical abortion, doing self-managed abortions in their own houses, in their own comfort zones. So for me, if I see a girl procured a safe abortion, I feel I’ve saved a life. I feel that life has been improved. Maybe she wanted to continue with her education. Maybe it was a rape. Maybe. Whatever the reason, I believe that I have saved lives by giving medical pills, by referring girls for abortion services.
Blessing Oladunjoye: Thank you. So you won an award recently. How do you think this would inspire you to do more?
Phylis Mbeke: I would like to call out the unique target of the award. The award targeted me as a grassroots woman who is doing a lot of work at the grassroots, and yet sometimes we are not seen outside there. So I want to recommend Women in Global Health for targeting us as women in the grassroots organizing community, health workers, and activists like me who do so much and yet we are not seen. It was quite an inspiration for me to feel that people are recognizing our work.
There are people who are there who are having an extra length to see women in the community doing health work. It was quite an encouragement to me, I can say because it has brought forth heroines that are not traditionally recognized. Sometimes when you talk about heroines, we look at different disciplines and different perspectives. But I like to recognize, acknowledge and really commend the Women in Global Health. they have gone the extra mile to see, look at these women in the grassroots movement who are doing so much work, yet not being recognized. Let us recognize them. Let us appreciate them. Let us tell them that they are doing good work and they should continue doing this work. So it is very motivational. It was very motivational to me. And I believe that they’ll continue seeing other women. And I believe that I felt the warmth that other people were able to see my work in my small world that I am in Kenya.
Blessing Oladunjoye: Yeah, that’s great, thank you so much. So lastly, what will be your charge to young women with disabilities, SRH advocates and all, to inspire them in this work that you do?
Phylis Mbeke: What will be my call is that resilience, we continue persisting, let us preach about our rights because we have a long way when it comes to the intersection of disability and rights. So to continue calling out, continue being in spaces, platforms, in avenues where we can speak about our rights, sometimes you’re not given these opportunities, Blessing. We have to look for them by force, by fire. I’ll say that we have to make sure, we have to call them out when we have not been represented. We call them out when we see they are not including us in this platform.
So continuous calling for representation continuous calling for inclusion, be it to donor funding, be it to policymakers, be it in the mainstream movement and not give up on fighting for the places, as they do not come on a silver platter, to continue being aggressive, to continue learning more on what is there and what is available for them, that they can take the opportunity so that they can mitigate the gap when it comes to disability and sexuality.
Blessing Oladunjoye: Great, thank you so much. Is there any other thing you like to say?
Phylis Mbeke: What I would like to say is that disability is an area that has continuously been on the margins. And I’m calling for disability rights to be centred and I’m sharing that people will not achieve what they want to achieve if they leave disability behind. So we ought not to leave anyone behind and ought to bring disability closer and have a deliberate and passive mind to include disability in all our work.
Blessing Oladunjoye: Great, thank you so much for your time, I sincerely appreciate it.
Phylis Mbeke: Thank you. Blessing and thank you for reaching out and considering me to have an interview with you.