Betty Cheptock

My name is Cheptock, Betty. I’m from Uganda. I’m from an Eastern part of the country called Captura. I’ll be 28 in November. My parents told me that when I was born, I was a healthy child. I looked so beautiful, but at the age of 5 months, they took me to the clinics in the village. I got an injection and was paralyzed. Afterwards, they had the desire for me to be like any other child. When it was time to go to school, my mother carried me in the morning on her back to school and my father would come in the after noon to take me back home. This happened for seven years until I completed my primary school. When I joined secondary school, they took me to a boarding school where you sleep at school. I studied in the boarding school until afterwards when my father got some information because I use to crawl because I didn’t have crutches. He met his friend who asked ‘why don’t you take her to get an operation? Maybe something could be done for her.’ So he took me to a rehabilitation center. They operated on me. After two years, I started using calipers at nine years old. I began using crutches and stopped crawling. Still, whenever we have holidays, they carry me back home and when school starts, they carry me to school. My father came to school and told me that female genital mutilation is a core value in my community. He said ‘I love you very much, but I have no option, no alternative. Please help me. You have to be circumcised with your younger brother.’ He told me everything had been prepared. There is no way, no excuse, no nothing, or the elders will kill me. I told my father ‘no, how will I handle the disability problem that I already have along with female genital mutilation?’ My father said, “I have told you, it’s up to you. You have a holiday in the following week. Make sure you come home. Your brother has already started mobilizing people.” It became a tormenting time in my life. How could I look at the disability I already have, and have the burden of female circumcision? The time came to close school and I talked to the head mistress. She told me that I have no choice. “You go and see what your mother can tell you.” I went to my village. I met my mother. Luckily my father was not at home. I went to my mother crying. She told me “Betty, I am supporting you. I went through the circumcision, your father went through it, your grandmother went through, but I don’t expect you to go through it because I know what it means.” So she carried me on her back to the nearby road where I could get transportation to run away from home. She told me to go to her sister who lives almost 100 kilometers from my village. I got there and slept. The next day my aunt took me to a village that was very far from her home. The following day my father arrived home and the people in the village asked “where is Betty, she has not come back.” He went looking for me and realized that I could only be at my aunt’s place. He followed me up to my auntie’s place and they told him I wasn’t there, though I was there, but was taken somewhere else. That was the end of my relationship with my parents. My father mostly. He refused to pay my school fees because I had embarrassed the family. He refused to do anything that a parent would have to do for his daughter. When the season ended, I went back home. It’s normally done from November to January. I went back home to request school fees and he disowned me and sent me out of my home. I continued to stay at my auntie’s place, then all of a sudden a friend called me and said “Betty, you know what? They want you to be in Kampala.” That was when I realized that God’s plan had not left me aside. When I came to Kampala, I got sponsorship. I studied and this time I would not go back home to my parents because no matter how much you have refused to be cut, they still force you into circumcision. When I was in the university, I contested as a student leader for students with disabilities because based on my past experiences, I had a lot of challenges which really gave me the desire to see how I could help the people who are in my situation, but who are still young. When I was at the university, I really felt that there was a gap. I needed to advocate for the rights of people with disabilities. I studied affirmative action until I completed the university, but one thing that inspired me is that if you really have the confidence, and you have the determination, you can make it despite having a disability or any other thing, you can make it. I made an awareness organization called Organization for Awareness of the Disabled (?) and I invited stakeholders, D.P.Os, I invited companies, I invited many, many people. Afterwards, people got to know about me. It created a kind of exposure, because we needed to make a procession in the university creating awareness with banners and moving around, and everything was very lively and educational. In one-way or another, it was a way to advocate for the rights of students within the university because issues with accessibility were addressed. Issues of human rights were addressed. Lecture rooms without lifts were addressed. Means of transport within the university were addressed. One of the greatest achievements that I left in that university was when they brought in the new vice-chancellor, he had to put in means of transport for the students and now there are vehicles that take students in shifts within the university whenever they want to go to the medical center, or anywhere, they are able to access it. That is my greatest achievement that I made at the university. I have a vision that in five years, all the categories of disabilities will have been mainstreamed, and they are able to speak for themselves without any fear of failure.

Ivan Luyima,
Uganda National Action Physical Disability, Uganda

My name is Luyima, Ivan. I’m from Uganda. I’m 28 years of age. I work with a disability organization in my country by the name of the Uganda National Action Physical Disability. I work as a volunteer. I work with people with mental problems. That’s basically what I do. I re-assure them. I check on their needs. I have to report to the office at times. That’s basically what I do. I joined the movement from the time I was born because when you have disability in my country, you are a member of the disability movement. I had it from my parents. My disability came as a result of an injection. It gave me a fever. I was injected with a medication that had the possibility of having a problem, and that resulted in my disability. All of the African countries, the don’t understand disability, but because of this generation, they are getting knowledge about disability issues, but previously it was challenging and still challenging when you go to the villages where they don’t understand what disability is all about. We are trying to make it understandable to people who aren’t consumers, who can contribute something to the society or to the country, but this will come as result of being trained to inform or to teach members that disability is not a problem, but someone who has a disability, once you train him, teach him, you get output out of him, but when you just ignore someone, at the end of the day, disability will not move on and that is what has been going on in my country. CRPD for me, I understand as a convention of rights for a person who has a disability. It would be more understandable if it was written in a language which people speak in Uganda. In Uganda we have a language that we speak but you find it [CRPD] is written in a language that is common, but not common to the people here. So if it is translated to the common language in the individual country, it would be easier for people to understand why the CRPD exists. The CRPD is the rights of people with disabilities to have education, to have health care or medical care, not just for the physically disabled but for all types of disabled. My vision for disability rights in my country is to see that all rights for people are considered and to be made disability friendly like any other country. That is my vision. I’m happy that I am living like any other human being and I am trained to do what other people are doing so that I live a normal life. The struggle that I work with is to believe in what I am like any other human being because I cant change this. I have to know that I have a disability but if you have a disability, it doesn’t mean that you have to sit home and wait. You need to be assertive. To talk to people. If you want something you say ‘I need this.’ If they cant help you they hurt you. You just need to be assertive when you want something.

From the hankyoreh

(Posted on : Nov.1,2012 16:20 KST Modified on : Nov.1,2012 16:54 KST)

Tanya Black of New Zealand

Visitors to Korea from all over describe how the advantages of their countries’ systems

By Kim Kyu-nam, staff reporter

“There was no reason for her to die like that. I’m very sad that she died in vain,” said a foreign visitor to Korea who suffers from a disability and recently participated in a ceremony for the deceased Kim Ju-young.

Tanya Black, 39, from New Zealand voiced her sorrow many times, unable to hide her mournful expression at a ceremony held in Gwanghwamun Square, Seoul on Oct. 30. Black uses a wheelchair after the lower half of her body was paralyzed due to myelopathy, a severe spinal cord dysfunction.

She came to South Korea on Oct. 25 to take part in the 2012 Asia and Pacific Disability Forum (APDF) held in Incheon. The day after Black arrived in Korea, Kim died in her apartment after being unable to escape from a small fire. Black took part in the ceremony along with 30 other foreigners with disabilities who were in South Korea for the same forum.

Black described New Zealand’s well-developed system for assisting the disabled to live independently. She added that she considers herself lucky compared to disabled individuals living in other countries.

Activists for the rights of the disabled have recently criticized the Korean government for grouping disabled people into levels and determining their amount of assistance according to their level. These levels don’t exist in New Zealand. No one fails to receive support on the grounds that their disability is not serious enough. The qualification for receiving the services of an assistant are not strict, and there is no limitation on the length of service. Black, who can use both of her hands, is provided support from a home care assistant in cleaning, doing laundry and other chores for four hours a day. If she had been born in South Korea, she would not have qualified for such assistance.

Black, who once ran a restaurant, was injured after falling down a flight of stairs six years ago. Now she lives alone, working as a producer for a broadcasting program for the disabled. Over the last six years, Black has received various welfare benefits provided by the New Zealand government to help disabled citizens live independently.

“The government gave me a car outfitted for the disabled at no charge, and renovated not only the interior of my house but also the driveway so that I could move around using my wheelchair. There is no major difficulty for the disabled in finding a job because the government provides 80 percent of the salary for the first year of employment,” said Black.

Disabled people from many countries who took part in the APDF said that the tragedy suffered by Kim would not have occurred in their countries. Patrick Pojaroles, 61, a Canadian who took part in Rehabilitation International (RI), said, “In Canada, a disabled person provides information on his or her disabilities to the government, and the local fire station, hospital and police share the information. These organizations can provide assistance at any time, whenever the person presses an alarm that they carry.”

Many countries have policies in place to support the self-reliance of the disabled and provide them with preferential treatment. In Taiwan, electric wheelchairs are given to those who are unable to move their lower body. Abraham Shiye, 44, of Taiwan, whose legs were paralyzed when he was one year old due to polio, said, “The disabled are able to rent public housing at a reduced price, and pay only 20 percent of tuition for schools all the way through university in Taiwan. I can also go to the public hospitals at no charge and receive benefits in housing, transportation, medicine, and education.”

Jeon Hyun-il, 68, who has been taking care of his disabled daughter in the U.S. for more than 40 years said, “I didn’t pay a single penny while she was enrolled in public education, Those with developmental disabilities are offered four years of additional public education for job training and social skills.” Jeon’s daughter, living in a country where such things are possible, has now become a competent worker who arranges books at a city library.

A disabled woman cries at a wake for deceased activist Kim Joo-young held in Gwanghwamun Square on Oct. 26.

Nick Ondwat
Consumer Action Disability Network, Kenya

My Name is Nick Ondwat. I was born in Homa bay in western Kenya. I was born like any other person. My mom and my dad tell me so. Until the age of 5, my mom left me behind when she had gone to the market in the morning, but she was called back before she accomplished her mission in the market. She was told I was seriously ill, I was sick. Then she came back and they realized that my lower limbs were weak. So after that I was taken to the nearest hospital, then I was given some kind of medicines to take care of my sickness but it did not help because after one week my lower limbs were still weak. They were told that this is polio. Still they tried to use the local medicine but this did not help. Then later on they declared that I was physically disabled so the alternative was to take me to a hospital to get the appliances but that did not happen immediately. Not until I was almost seven years. When I was in class 6, my father fell ill. In 1989, he died. That was January. From then our life started to be difficult again because my mom was all alone and I was the oldest and had five siblings. In Kenya, people believe that the disabled are to make shoes, they are to be cobblers. I can recall one of my uncles insisting that instead of going to highschool, I should go and be a cobbler. So my mom was like, no, I should not go to be a cobbler, I should go to secondary school. She insisted and I went. She had to look for money and I went to highschool. My mom got ill again and was seriously sick but I had to sit in school to complete my studies. So I sat in school for that period. I can recall one day she tried to go to the market to look for products and she got in an accident. Things disappeared because when the accident occurred, some people took materials, took everything. The most important thing is that some good samaritans helped her, gave her some money and she came back home, but it affected her. I was struggling in school, but when I completed fourth form, that’s high school, I started looking for how I could take care of myself and maybe my siblings and my mom now. My mom was seriously sick, she was bed-ridden so I had to come back. I had completed my fourth form, I had no job, and there was nobody. I was doing this business of selling clothes, and in Kenya selling clothes and moving from market to market, you have to carry them, so I can recall waking up in the morning and rushing and paying someone to carry this luggage to the market for me, or to the bus station, from the bus station to another market, then I open my luggage, do my business, then in the evening the same. Pay somebody to carry it to the bus station and maybe put it in the bus, then I reached the town and did the same thing. This happened for almost eight months. When it came to September 1998, my mom died so I was alone with my siblings. One day my uncle came to me and wanted me to be a cobbler again. So I was wondering why is he insisting that I become a cobbler? It happened when I was in class 8, then when I was in fourth form, and now he insisted again. So he came and picked me up and took me to his house. He took me to a certain cobbler and asked that cobbler to train me. The guy told him 6000. He said 6000 for being a cobbler? The guy told him yes, 6000. So my uncle told me to talk to this man and see if he can reduce the price. Talk to him, and we’ll talk later. Then I went and talked to this man and I told him that I am not interested in this job. I got my education in business administration and I’m looking for employment. So I left that guy. After some time, when I was staying with my uncle, my aunt sent me out of the house. So at that point, I asked myself, what next? I visited my friend. I told him what was happening, then he told me, lets come together as persons with disabilities. So one day me and my friend Walter sat down and came up with the problems we were facing as persons with disabilities, then we said, what can we do as persons with disabilities? Then we came up with an initiative. We came up with an organization called Consumer Action Disability Network. When we were establishing this organization, we had nothing. So we looked for money to register. Registration costs 1000, which was another problem. We raised the 1000 and after that we talked to a certain judge to see if they could give us an office because we wanted physical identification. That judge gave us an office and we talked to the judge, we talked to the bishop, and started articulating our issues. After that we brought in some other members with different disabilities because we didn’t want to do it as Nick and Walter, we wanted to do it with other people with disabilities because we find out problems from sharing with others. From there, we started mobilizing for resources, but getting resources in Kenya is another problem. So what we have been doing is articulating on issues, we teach people about disability issues, we go to forums on disability, maybe public forums whether or not it is on disability issues, but we have to include disability issues so that people know what issues people with disabilities are facing.

Ruth Nabasirye, Uganda

My name is Ruth Nabasirye from Uganda, the central part of Uganda and I am 30 years old. I joined this movement through a counselor who was involved in the disability movement. She was a lady who came and talked to me and gave me advice like I should join because I looked like someone who can really advocate for disability issues in the future. She really encouraged me to join. So when I started off I was working in a facility mainly for children with learning disabilities but there were others with physical disabilities as well. I think that is in some way how I came to join the disabilities movement. It got Polio when I was two years old. I grew up basically with my mom. Sometimes I would stay with my dad, but mainly with my mom. She really catered for me; she was the one who carried me because at that time I had no wheelchair. It was very difficult to get to school; she had to carry me on her back. She would come and bring things to me and also carry me back. When I was at home I just used to crawl because I had no wheelchair. By the time I moved up in school there were some Dutch people in the school. One of the Dutch ladies took interest in me; she would say I was very stubborn and funny and that she would look after me. She said I will care for this girl and pay for her education. Later she gave me a wheelchair and I was very happy. No longer did I have to crawl or have my mom carry me on her back. This lady saw how determined my mom was to make sure I went to school and that’s why she gave me the wheelchair. My dad… he never cared, at first he cared when I was in primary and then stopped. When I had somehow lost contact with my friends who paid my fees, I went to him and asked him to pay, but he said no I can’t give my child with a disability fees, you have no use for them. He said you have no use, I saved you just to do house work, and you should not go to school. Or if not you can go do craft work like tailoring and I said no I want to go to school I’ll do tailoring later. He wasn’t agreeing with me. I just went back to school and lied to them, saying they are bringing the fees, but there was no hope. I could not tell my secret, the money to study fell slowly but surely. I had friends like teachers and the head master. I would sit and talk with them and when I told them my situation the head master said you come and take the exams, you can pay us another day. When I was with my dad I really suffered because he expected me to do every type of work. After I realized he was not giving me the fees I gave up on him and went back to live with my mom. I thought maybe I would come across another opportunity. I did well, I did my degree in secretarial work. I passed with an upper second class degree. I found that once I left the school, getting a job… well employment for people with disabilities is difficult. That’s the hard part about this kind of life, everyone expects you to be able to do any kind of job.

Sexual violence…. Is really high and especially in our country and war zones. We have been having a war in northern Uganda for over 20 years. Whereby so many woman or young girls with disabilities have been rapped, there being rapped, left with pregnancies helpless and then they get that tumor. So they end up being affected seriously. Some girls come to accept any man because they feel like they don’t have a choice. They don’t have any say because they feel like there is always a chance that they are going to be rapped so they might as well just go with anybody. They don’t get a chance to learn how a man should behave and then they end up with men who are just going to use them.

So in Uganda we are volunteering as an organization of women with disabilities who can go on and educate other young girls with disabilities to feel confident enough to say no to men who just want to use them. Right now the men come and give them money so they accept it as the way things should be. This is very painful for these young girls but it is the life they know. Most of them are just doing it because they are ignorant and that is how they really suffer. The men only come at night to sleep with them and then during the day they don’t interact with them. The men don’t want others to know they are having sex with these young girls. Eventually these men just leave these girls with children and I would say that is sexual violence to young girls in Uganda.

This is a beautifully shot mini-documentary about the first all amputee ascent of the southeast face of El Capitan in Yosemite National Park. Watching these determined adventurers scale the 1,800 ft wall over the course of 5 days is extraordinarily inspiring.  The underlying (missing) message here has not only to do with the individuals who set a goal and achieved it, but also the society that supported them along the way.  Each one of these adventurers had moral and financial support needed to feel good about their disabilities, develop a positive self-image and advance with their passions and careers.  They each benefited from laws and opportunities that were developed by disability rights advocates, scholars and policy makers.  Laws and opportunities that allowed for inclusive sports programs to be developed. Laws and opportunities that changed access standards in high school physical education courses or in the gym down the street.  Ultimately each one of these adventures is climbing not for themselves, but for all of, climbing the mountain of hope and showing all of us that by working together, by challenging our assumptions, by building off our collective victories we can make the impossible possible.

James Ochan
Young Voices, South Sudan

My name is James Ochan. I’m from south Sudan. Southern Sudan, a country that is going to be born anew in Africa. By July 9th, 2011 it will be a new country in Africa.
I joined the disability movement in 2009 with a group called young voices. It is a project of Leonard Cheshire disability. I joined this group in 2009 and I’m active in the same group and have become somebody knowledgeable about disability, especially in my country. We used to carry out a lot of activities concerning disabled people in southern Sudan and from that moment I became somebody known to this movement.
We have a lot of experience but the community doesn’t understand what disability is. They take disability in terms of things that are cultural and they take disability as a curse or something that’s not supposed to be there. But according to their experience we are trying to put all of this understanding to the newest ways of how disabled people can be viewed. According to the conventions, it is also part of human rights.
We’re not supposed to be viewed, like we were in the past, as a cultural thing. They isolate people with disabilities. They marginalize. For example, in southern Sudan, people with disabilities are not yet accommodated. All of the items, the constitution, all of the buildings around, they are not friendly to people with disabilities. That’s what we can see. It is part of discrimination. No exclusion from what is going to be the newest country in the world. (note: delete ‘from now’ at front of caption) What we are trying to do is: people with disabilities should be included in all walks of life, especially when the government is designing programs for the nation, they should also think of disabled people. Since this country is still new, they should also think of disabled people. How to include them… how to mainstream them… how to make them participate in decision-making and the development of the nation…
For example, a few days ago we went on the street demonstrating on the new constitution, because the constitution doesn’t show the rights of people with disabilities. It doesn’t include people with disabilities. That’s why we went out to demonstrate so that they can include the rights of people with disabilities. They can also include what is called the South Sudan Disability Act, so ((note: uncapitalize ‘s’) that we can have the same rights in the country. (note: delete ‘as they need to’) They need to have rights… they need to have freedom. We need also the same rights,we need to have the same freedom.
So we mobilized ourselves, we went on the street with a petition, a written document, we went to the South Sudan legislative assembly. We handed the document, and they promised us after 7 days, they are going to call all of the DPO’s leaders, plus people who are experts in the rights of people with disabilities so that they can sort these things out. Up to now, I don’t know what has happened because I’m out of the country of course, I’m in Kenya right now.

Victoria Davis
African Youth with Disabilities Network Member, Liberia

1. It is not easy to be disabled in the African region. You suffer a lot. Here they don’t want to hear your voice. Because they classify disabled people as nobody in the African setting. You want to go to school—no way. You want to do something—no way. You suffer a lot.

I was hit from a rocket in 1990. The rocket hit my back and damaged my spinal cord. I walk pon my legs, I can’t walk without these crutches. So it’s not easy. I have nobody taking care of me. My father is dead, only my mom and my mother is an old woman. I don’t have any family member to see taking care of me. It’s just by the grace of God that I’m making it.

2. My vision for disability in my country in the next 5 to 10 years, I want to see the disabled youth on top. Not down to the level, they should come on top. They should be in the House of Representatives. They should even be a Speaker. They should be a decision making. Any part of government entity there should be two disabled persons there. Even in private entity there should be 2 or 3 disabled persons represented.

Sofia Aujo
African Youth with Disabilities Network Member, Uganda

1. If a couple brought a disabled child, they may think it’s a burden, that’s one, shame. So in my community people tend to hide the disabled children. If a visitor wants to come in this child is supposed to be hidden out from the visitors. Politically, my country, if you stood for post, like you wanted to become maybe MP—that’s Member of Parliament—people look at you like they don’t understand what you’re saying. They don’t understand what you are doing. You have a shallow mind. You many not represent at the Parliament. So they won’t look at you. They’re not taking your views. Never mind you’re trying to convince them. And if you convince them, you have to convince them more than any other person would do that. You have to talk an talk and plead more than any other person would do.

2. We had a nice convening of persons with disabilities which was so exciting, inspiring and it has helped us develop a lot of skills. We have learned monitoring by ourselves in our own countries. We have learned how to approach different stakeholders in our countries. We have also learned to debate. And for me, I’m a young voice member, and what we normally do, we do campaigns and advocacy on the rights of disabilities. And one of the activities we do in our campaign, we do debate. So they’ve taught us debating skills which I’m going to implement. We have learned how to talk for ourselves. We have learned how to fight for our own rights. And we have learned how to monitor which activities are being carried out in our own countries. The budget—how we can be included in our own countries’ budget. A lot of things. It has inspired us, we have grown strong voices. So we are going back to our countries happily so it has been very good.

Simon Eroku
African Youth with Disabilities Network Member, Uganda

1. First, when I’m sharing my disability it reminds me back when my vision was before. Because personally I wanted to be a medical doctor. That was my dream and I wanted to be a great scientist. Before, I was a normal person until 1993 when through the insurgency and through tortures, when I was still young, we went through at the hands of the soldiers where they slapped me on the side thereby causing me loss of sight. So therefore I am a person with a visual impairment caused by disconnected lenses. Life was totally dark to me, as I said I had my vision earlier, losing my focus first. And I now have to start walking forward so I first access education.

2. What helped me to become a strong leader? One, as a person I had to go through several challenges where I was giving up with the life. So the encouragement I accessed right away. Encouraging myself to move forward and be educated helped me to get knowledge and interact with people. Then with the coming up of the CRPD, it boost my ideas of being a leader by providing me with the knowledge. To me myself, I don’t know that I am a leader until somebody tell me that. I say, who does a leader look like, but I continue to do it, see. To my perspective I don’t know that I am a leader but I continue pushing things forward for the benefit of persons with disabilities.