A Discussion with Jane Kihungi, Coordinator of Women Challenged to Challenge
With: Jane Kihungi Berkley Center Profile
November 11, 2014
How would you describe the situation for persons with disabilities in Kenya? And what history led to this current state?
You find that everything that is here for persons with disabilities was started by religious people, like the schools. Missionaries came in to create education, others to provide health. This shows that religious institutions have a lot to do with the development of persons with disabilities, especially when it comes to provision of education. Most of the special schools are religious-based. The Salvation Army owns most of the special schools in the country. In Central Province we have two main schools for the blind and for physically disabled. In Kisumu, there is also education for the blind and physically handicapped. Mombasa has a secondary school that takes learners with physical disabilities. The Pentecostal Church of East Africa runs most of the deaf schools, for those who cannot hear.
Given all this faith-based support, what does the government provide?
Historically, the government had very little to do with the development of persons with disabilities. In the case of service provision—let’s say wheelchairs or other assisted devices—primarily private institutions provided these. The government has slowly come in to help, especially now the government has taken over all schools to provide free primary education. So church-sponsored schools continue, but the government has become the provider of teaching staff, materials and so on.
Now that Kenya offers free education, is there adequate support for students with disabilities?
With the free primary education, you’ll find that whatever the church was contributing has stopped in some schools. This is due to the government’s policy and promise to provide a free education for all, including for learners with disabilities. But again these learners with disabilities have special, special needs. So we have seen a decline in terms of learning materials…you can see that the standard of education in these schools is deteriorating.
We went to Kisumu last year to visit a school for the blind, which was primarily sponsored by a Christian German organization. They had been providing braille paper and machines, but when the government said that it is the obligation of the government to provide such things, this stopped. The government has designated 2,000 Kenyan shillings for each student with disabilities per term. That is not enough to buy such supplies. We are saying it’s not enough.
How else does the government of Kenya support persons with disabilities?
In our new constitution it is clear you cannot discriminate because of gender, skin color, or disability. In terms of representation, today we have people with disabilities in Parliament and in county government in part due to affirmative action: in every county there will be two people with disabilities, a man and a woman. These persons can push for laws that are inclusive.
We have the Disability Act that governs the rights of people with disabilities, implemented by the National Council of Persons with Disabilities. The Act includes provisions for a fund for persons with disabilities, that started in 2010. They disburse money for economic development. The Women’s Development Fund reserves ten percent for women with disabilities.The Act says that 5 percent of every employment should be persons with disabilities. When the government advertises job openings, the ad states ‘persons with disabilities encouraged to apply.’ This has resulted in a number of persons with disabilities employed in the government sector, private sector, and public sector.
There have been many gains, but there is work yet to be done. For example, there is a law that says all public buildings should be accessible by all. This is not yet the case and public transport is the worst, the worst! Our lack of public transportation means the government lacks control to regulate accessibility. At the moment, persons using wheelchairs have no chance to get a ride home after 5 p.m. in rush hour traffic.
How does your organization fit into the disability movement in Kenya? And why the focus on women and girls?
Historically, people with disabilities have had no say when needing services or no right toward what you need or prefer. The disability movement began to challenge all that, to say, “Okay, here you are giving us education, but after education, we don’t get employment. Employers think that we cannot perform like any other—but we need employment. We need everything else that goes with being a human—all those rights.” That’s how the movement started in Kenya.
Men were at the forefront of this movement, and then women behind them. This is because of the African culture; men lead, men talk, women do not talk where men are. Even in the movement of disability women were suffering. I remember I belonged to an organization of people with disabilities. The chairman, the secretary, all top seats were occupied by men. Women were just playing the subordinate roles.
This means projects to develop women [with disabilities] were not given much priority. We used to form a ‘women’s committee’ within an organization, or women’s wing. But if the men—main leaders—decide they don’t need the wing, then we are fully excluded.
How did you decide to start Women Challenged to Challenge?
We saw that there are specific issues that are affecting women that are not really affecting men with disabilities. We thought, let’s start an organization of women with disabilities. Nine of us came together to start Women Challenged to Challenge. Today I think we are over 1,500 members.
We came together in the year 2000 to start brainstorming and contributing money for registration. By 2003, we were meeting in our houses. Then we decided that to do something for women with disabilities, we cannot do it from our own houses. Why don’t we start an office and have a secretariat that is going to run and develop projects and programs? We approached the government, the ministry who owns this place. We asked for a space and were granted it. Without the money to put up a building, what do we do? Again the women came together with our friends, and we bought this container, which is our office. From this, we have been able to reach a large number of women, not only in Nairobi but in other counties too. We also reach the rural women, whom many people forget exist.
How does membership work?
We mobilize members by talking to them. They form small groups, register with government, and then register to us once they get the certificate. It’s necessary to register each group so you can have legal status and be recognized by the government. Without that, you cannot open a bank account.
The idea of Women Challenged to Challenge is to bring women together in the country, and to speak out together. Once a group can do that, once we have empowered them and point out the issues that affect them and that something can be done about it, then they are able to solicit for funds from the government or local partners.
So you empower women to start their own local groups. Can you give an example of how this starts in a new community?
I always give this example of Agnes, who already had a group before we went to them. hey were calling themselves “Challenged to Challenge.” When I met with Agnes, I learned she had never left her village. We were in a small town but her residence was on the second floor of a building. She had never gone upstairs. She has never slept in a big and clean bed. I asked her, “Suppose you come to Nairobi?” She replied, “No. How do I get to Nairobi? How? I don’t even know anyone who would ask me to visit?” I replied, “We are going to invite you.”
We invited her for a national meeting for women with disabilities; every region was represented. We were presenting on reproductive health rights of women with disabilities. To help her attend, we asked her to give us the number of the bus she would board. We can then find her bus and bring her to the event. When we found her, she was so afraid of walking in between the vehicles. Our meeting was at one of the five star hotels; she has never seen that.
We continue building her capacity as the leader of that group. We have given them loans to start businesses. And she’s on her third loan. She goes to the bank with the money. Initially it was hard for anyone at the bank to allow her to even get in the bank, but through our talking, through our empowerment, she’s able to say, “I am coming to give you business, let me in.” So nobody stops her. You can see how far the group has come. They are able to feed their families, pay school fees, and all that.
Since the groups start up based on need, they must be very diverse.
Through the formation of WCC, so many other groups have been formed. We see groups form around a particular disability, for example those who are deaf form an organization of deaf women. That’s what we wanted—go ahead! We don’t want to just remain as Women Challenged to Challenge. The bigger we are, the better.
What specific topics for women and girls with disabilities are you focused on currently?
We talk of health—reproductive health and HIV/AIDS. We also focus on economic empowerment, such as micro finance. We talk of governance and leadership, and also how they can be their own leaders. We have a recent project published on gender-based violence. We talk of climate change and how it affects a woman with a disability. We have taken on tree planting as one of the things we can do together. They are able to sell their trees for restoration of forests and conserve the environment.
Now we are trying to work with the government to review health policies, for example, the national reproductive health policy. For years, many laws and policies were silent when it comes to disabilities. Therefore we are saying it needs to be put in law and implemented. We are saying that a woman with a disability needs comprehensive reproductive health services.
Last year we addressed the education act to make sure people with disabilities are included at the national level.
We want even the schools to introduce reproductive health education so girls and boys grow to know their rights. We also talk to doctors and nurses to train them on disabilities. We want more accessible health facilities. When the distance to a facility is too great, we find mothers deliver at home. Once they get to a health facility, the equipment may not be available, like the delivery coaches. We are telling the government they need to do something to change the attitude for the sake of the community.
We also ask doctors and nurses to learn sign language so they can be able to communicate with the deaf. We have trained them in sign language. We have handed over that class to the government, and they are training nurses and doctors. We continue training them in counties where we have done research on gender-based violence. We want to train the police in the sign language so they can communicate with us. So it’s about several issues; you cannot say that we have done enough on reproductive health or that we have done enough on HIV/AIDS because things keep on changing.
What is the attitude toward disabilities in Kenya?
First [disabled persons] have to accept who we are. I have this challenge, but then there’s so much I can do despite the situation I am in. So we encourage people to go, move out because people are looking for people to employ. Show them you can work.
How does Women Challenged to Challenge help disabled persons find employment?
We also talk to employers saying, “Give them jobs, and you’ll see what they can do.” I worked on a project with persons who became disabled as a result of the bombing we had in Kenya in 1998. I talked to employers asking them to employ these persons again; some of them became very disabled. In the process, I may recommend others with disabilities, not only those injured by the bombing.
This shows the attitude: I went to a very good company, a big employer, and then they say, “Bring us 10 people, but make sure there is no deaf or blind person.” You can see the attitude. They were concerned how to communicate to a deaf person if they cannot even hear the sound of a machine. The blind person won’t be able to see what we are doing.
I convinced them to give these 10 people a test, a chance to prove that they can do it. Let me bring two people who have a hearing impairment, two who cannot see, and six who have physical disability. Let them work and then you can judge.
They agreed to hire these 10 people, and it was so amazing. Show the blind persons the geography of the place once and they learn the layout quickly. In Kenya, it is not like America where the issues of disability are advanced to where employers must be reasonable, accommodating. But we are trying.
Where are attitudes most difficult to change?
There needs to be changes with health service providers. Currently, when you have a disability, the medical personnel define you as a sick person. This is more of a stigmatization than discrimination when they call you a “sick person.” Just imagine you area person with a disability also suffering from another ailment visiting the hospital. I often give my own example; I developed an eye problem when I went totally blind. When I went to see the doctor, they always focused on my physical disability instead. I’d redirect them saying, “No, no, I am talking of my eye. I’m not talking of my legs. Stop talking about what happened to my leg and just tell me what is causing my blindness.”
If a person is sick, maybe suffering from flu, the doctors still want to relate it to your disability.
As you work on reproductive health, how does this attitude toward women with disabilities continue among health care providers?
When it comes to mothers and forming a family, you can imagine how this attitude plays out: here is a woman with a disability who is not supposed to to be loved [by a man] or taking care of her own family. She is supposed to be taken care of. The adult woman is treated as if she is still a child needing to be taken care of.
The service providers are part of this society that discriminates and stigmatizes against women and girls with disabilities. Because they believe we are not supposed to be loved, and therefore should not be pregnant, the questions they ask are very dehumanizing.Too often we see that once a woman, newly pregnant, goes to see a doctor. They respond “You are not supposed to be here.” Next you visit the national hospital, because they have all the qualified doctors and all the other facilities. At Kenyatta Hospital, our national hospital, they see your disability and automatically write “cesarean, CC.” They can’t imagine the woman will be able to carry the pregnancy to term so to minimize risk they have you back one month the due date to do a cesarean. This is automatic.
Even more troubling, during the cesarean, they sterilize you during the operation so you cannot give birth again. They don’t consult you. They don’t tell you until afterward. They say, “We did this to you because you are becoming a burden and having a child adds more burden.” Women suffer; if she wants a second child, she cannot. Some never know what has happened in surgery.
I am shocked the doctors would make a permanent change without consulting the patient! Where are family members during the woman’s pregnancy?
Let me tell you the story of Margaret who became pregnant before completing school. When she gave birth, her parents took her to the hospital, and they told the doctors to sterilize her without her knowing. When leaving the hospital, the doctor tells her what has happened. Her step-mother blamed her saying, “You don’t know how to take care of yourself, and you want us to take care of you and your children? It is good that the doctor did this to you.” Because of this stress, Margaret did not eat well and the baby died. Through Women Challenged to Challenge, this woman has been given a loan to do some business and trainings. She would have been able to bring up a child, but she can’t because of what happened.
And she’s not alone. So many others have had such things happen to us. This is why we focus on rights and tell the doctors to stop this. If the doctor wants to do cesarean, let me know, like any other woman. Give me an opportunity to see if I can have a normal delivery, and if I’m not, then go to the next step. The same as what you do with other women.
Are there other areas of challenge for persons with disabilities seeking medical care? What obstacles exist?
We keep telling our development partners that disability goes with cost. It’s not enough to invite people with disabilities to a meeting—you must provide some provisions. We have to have sign language interpreters who are being trained by the deaf. There are quite a number of trained interpreters in the country, but they need to be paid for their services.
Expenses of interpreters is one thing, but medically, confidentiality is an issue. We are encouraging nurses to learn sign language—also to protect confidentiality and allow direct communication with the provider.
Let me share an example gone wrong. A girl in one of the counties where we started training them in sign language told her story of going in for HIV testing. The doctors realize she is HIV positive and they give her medication, but they cannot communicate with her. All she understands is to take the medication morning and evening; when it is all used, she will return for more. As she told us this story, we went to talk to the nurses. We could communicate with her that she has HIV, but she needs a lot of counseling.
Another woman sought family planning services. The doctors didn’t know how to communicate so she had no choice of method—or explanation of usage. This girl was given tablets to insert vaginally, but she didn’t understand this. At home, she swallowed one! Fortunately she was able to communicate this the following day with a friend who is also deaf; we went immediately back to the hospital with her, with a sign language interpreter. The health providers said that from now on they want to learn sign language as a result.
How do you work with families of women with disabilities or communities?
We need to work with family members, especially if they have different perspectives, which are not very good. We all know that people with disabilities ought to have family support, so we have the challenge of trying to make the family members understand that [the disabled family member] is one of you and she should be treated just like you are treated.
With some disabilities, like autism, the parent doesn’t know what to do or where to go. They only know to lock up the child for safety and for the mother to be able to go out for food. So once such a situation is found, what do they do? They call the police and the mother is arrested. It is featured in the TV. But she was doing that because she didn’t have any other alternative, you know?
And sometimes, it is not because they don’t know what to do with disability; it is fear. What are people going to say about my child? About me? Am I going to lose my marriage, because I have given birth to child with disability? For a majority of women, their marriages have ended once a child is born with a disability. There is this fear within the society and the disability is taken to be a curse, like a punishment from God, as if your parents did something wrong. Nobody wants to accept that, and so they hide these children in the houses without people knowing.
Also, disability and poverty are interrelated. Either the poverty causes disability, or disability causes poverty. It’s hard to separate the two. So when a child has been born into a family that has no source of income, you can imagine how hard it is.
How do you see religious communities or organizations working with people with disabilities?
Historically, a lot of the work has been done by religious groups to offer education to persons with disabilities. Now we see some church bodies developing programs that are designed to target people with disabilities. The National Council of Churches in Kenya used to have a whole program for disabilities that was run by a person with disability. The Anglican Church also has a program on disability. They’re all doing something. Here we have the World Council of Churches that has worked with people with disabilities. We have worked with EDAN (Ecumenical Disabalities Advocates Network) who has done a lot on the implementation of the constitution.
Do women and girls with disabilities feel welcomed within churches and faith communities? How do faith leaders address attitude issues?
Well, there we have a problem! For example, in some churches, if you have a disability, you cannot become a priest. They explain it’s because God does not accept the deformity; God wants a whole person. That’s how they interpret the Bible. So here I am limping or have no hands and therefore I’m not whole and God will not accept my service. I met a sister who fell during her training, before she completed it. The fall injured her spine but healed over time. But she still has difficulties such as lack of bladder control. But nobody knows within the order. She fears that once they know, she goes home.
Miracle performing is another issue. Faith leaders target people with disabilities during worship services. I’ve even seen my parents with the hope I will be cured or say that I need to be healed. For a long time people with disabilities don’t go to church, because they fear this targeting and being prayed for. And if you are not healed in that moment, then you must lack faith.
Very few churches allow persons with disabilities to be pastors or leaders. I have yet to see an ordained pastor or bishop who has been disabled since childhood. Most disabled pastors you would see today acquired the disability after becoming a pastor.
The church has failed in this way. The first thing you see for a person with disability is their disability—not seeing them first as a human being. You relate them based on their disability. They are seen as a sick person. This means failing to identify the person’s gifts that could be used in church, for example to become a pastor if he wants to. So I think the church has failed in this way.
A number of churches have started services, mainly for the deaf. You’ll find they will want a service for the deaf only—which is not inclusive. Catholics with interpreters require the intrepreters to stay to the side and not be up front and so visible. Churches with no ramps and full of stairs indicate they don’t want us there. Even though they don’t say, “no” and they say, “everyone is welcome,” they don’t want to help or accommodate. I want to go to a place where I am able to enter freely, to use their washroom freely.
Yet things are improving. Quite a number of churches have ramps. They’re calling us to talk to them about disability, and they’re interested to learn sign language. But when you encourage deaf people to come to your church, let them be amongst everybody. Don’t set aside a service for them.
Please tell me about your new project on gender-based violence against women and girls with disabilities?
Using funds from Open Society, we wanted to address the gaps of criminal justice when it comes to disability. First and foremost, we wanted research and facts about our suspicion that women and girls with disabilities are more vulnerable to gender-based violence. The research was done in early 2014.
We have trained some trainers of trainers at the community level to help us raise awareness about the report and its findings. For example, we learned that once a girl has been sexually abused, the matter doesn’t leave the family level. If it is reported outside the home, it goes to administration such as the chief, and assistant chief. And it may go out to some village elders. How are these cases settled at the village level? Often, they fine the man and then the matter is over. The parent receives 5,000 KSh, but has the victim gotten justice? Will the perpetrator reoffend?
We found so many girls—especially those with mental or intellectual disabilities—being raped or sexually abused by family members, friends, people they know, service providers, everybody. We want to educate the judiciary so that they are able to take up the cases, document up to prosecution level. We also reach out to police and parents—please report these cases. Go let justice take place.
Who are you targeting to advocate for better protection of women and girls with disability who are survivors of SGBV?
At national level, we are dealing with the police, the judiciary, and the lawmakers of course. We learned we have a very good sexual offenses act, but the magistrates and judges do not use it. They want to refer to the penal code but as we reviewed it last week, we noticed problems with its language in reference to persons with disabilities for example: “idiots, imbeciles, unsound mind…”
What is the general situation for GBV survivors in Kenya? What systems or resources exist?
Most police stations have established ‘gender desks’ where cases of physical or sexual abuse can be reported. We also have hospitals starting those kind of services for gender-based violence. But do victims report these cases? Physically, emotionally, or even sexual? But regardless of that, measures have been put in place and you can see things happening.
The gap we see for persons of disabilities is that they don’t know how to handle these cases. They are not putting proper accommodation for people with different disabilities to be able to express themselves. If a deaf person comes into a police station to say through an interpreter, “I’ve been raped. My husband has beaten me.” Will they be believed? Sometimes they will be dismissed. The police have said, “No, no you need to express this with your own mouth.” Some lawyers don’t know what to do, some know what to do. There is definitely a need for more training.