Come out of the shadows on disability
Just last year I discovered the truth about why I was born the way I was. I now know that I have a genetic disorder that meant I was born with a malformed mouth, hands and left foot. But for years my family and I thought this was caused by the strong flu medication that my mother took while pregnant with me. I’m 36 years old and it’s only now that my mother can feel some sense of relief and can begin to let go of the guilt and blame that she has felt all these years.
I’ve had five operations, including lip surgery to give my tongue more movement, allowing me to speak more clearly and only with a slight lisp. As a child I remember kids would mock my accent and speech. I also had painful lip sores because the shape of my lips meant that my mouth was permanently wet. I’ve had three operations on one hand that involved attaching two fingers together to give me more flexibility and usage. My feet are disproportionately small in comparison to my body size. I tire easily when I walk, despite wearing special insoles.
I came from a loving family and my brother and three sisters have supported me. But my father has never said anything about me being disabled. He just can’t bring himself to talk about it to me. I’ve learned that, especially as a person with disabilities, it’s important to communicate. So two years ago, I wrote him a letter about how I felt. He thanked me for it and I think it’s brought us closer.
In Colombian society it’s much harder for men to accept a daughter with physical disabilities. There’s a macho culture that promotes the notion that a man who has failed to produce a healthy baby is less virile. That’s partly why I’ve never spoken directly to my father about how he really feels about me being disabled. He’s not an easy person to get close to anyway. But I imagine that he’s felt a sense of disempowerment and emasculation.
By law, all schools have to receive children with disabilities and cater for their needs. But I know that sometimes disabled children are just placed in a corner of the classroom and told to get on as best they can. And there are no state schools providing the kind of care that’s needed. That’s why mothers sometimes prefer to keep disabled children at home. There’s also little understanding and knowledge of the different types of mental heath problems. I once heard of an instance where a group of children with Down’s Syndrome were given fake guitars to play with because it was considered pointless giving them real ones.
Steering clear of saints
As a teenager, my relationship with and belief in God was questioned and put to the test. I felt angry with God for the way I’d turned out. I used to ask myself, why did God allow me to be born like this? As I’ve gotten older, I’ve reached a certain level of resignation and acceptance. But the truth is you never really accept your situation. Instead, I’ve learned how to focus on being more positive and optimistic about life in general.
Women face additional pressures living in a macho society. By a certain age, usually before their thirties, women are supposed to be married and have a family. Not fulfilling this role means it’s difficult truly to fit in and be accepted by society. Some people think a woman who’s not married must have something wrong with her. As a woman with disabilities, it’s even harder to fulfil such requisites and norms society has imposed.
In Colombia, there’s great pressure on women to be attractive, slim and look young. Here a man tends to show off ‘his woman’ in public and that means parading a woman who is pretty and has a good body.
I’ve had a few boyfriends in the past but nothing serious. I’ve got many close male friends but they just don’t look at me in a sexual way. I’m sure that some people think that people with disabilities have no sexual desires, that we’re asexual. I would hate to feel that someone is with me out of pity and that everyone else is thinking what a saintly and kind man he must be to be with me. I have to be really secure in myself not to feel like this. Because of this, I find it difficult to form long-term relationships, as you never know whether a person is really with you because of who you are and not out of some obligation and pity they feel, however slight.
Attitudes are slowly changing. Today disabled people are more visible in daily life. In the past, mittens were put over children who had malformed hands to hide them from public view. Now it’s more common to see people in wheelchairs and blind people in the street. But it wasn’t until I was 25 years old that I realized that other disabled people existed.
The way we speak about people with disabilities and the terminology we use is changing too. In Colombia and Spain, people with disabilities were commonly referred to as minusvalidos (literally ‘invalids’), implying that such people are less valid and useful in society. Nowadays the term is used much less.
Here the issue of people with disabilities has only really come to the fore during the last decade. Jairo Clopatosky, a Colombian senator who was paralysed in an accident and now uses a wheelchair, has helped to raise awareness among politicians and the public and to push for reform. In 1997, a series of laws were passed to provide financial help, including tax breaks and pensions. In practice very few disabled people are able to access the benefits of these reforms. Also what has helped to generate more public debate and attention is greater local media attention and pressure from international organizations working in Colombia, such as the UN and World Bank.
But helping people with disabilities is not a government priority. Colombia is a country at war, with other urgent issues such as the problem of millions of internally displaced people across the country.
In the flesh
I’m lucky that I and my parents have jobs and we’re able to pay for private health insurance and my operations. It was really difficult getting a job, despite speaking English and graduating from a prestigious university with a good university degree in business administration and accounting. I had no problem in getting job interviews but when I turned up and people saw me in the flesh, the atmosphere changed. I’m sure employers were thinking that because of my hands, I couldn’t possibly have typed my CV myself. Few employers are willing to take on the possible extra healthcare costs and hire disabled people.
I find it difficult to form long-term relationships, as you never know whether a person is really with you because of who you are and not out of some obligation and pity they feel, however slight
Probably the most painful part was the reaction of one of my sisters. I remember her once saying to me, ‘Look, I don’t think anyone will employ you’. Her reaction was particularly hurtful because I thought: if my own family thinks like that, then what will strangers think?
In my role as leader of the women’s committee of the Colombian Association for the Development of People with Disabilities, I think it’s important to get disabled people to share their experiences together in groups. Every month, I and a friend of mine who is also disabled, organize group meetings for disabled women and form local support networks. We also help people with disabilities who may be entitled to government aid to apply for it, despite the long bureaucratic process. It’s almost impossible for people who aren’t employed to receive some sort of government help.
The problems I face as a woman with disabilities stem not from within me but from the attitude of other people. My challenge is about being proactive and independent as a person with disabilities and doing what I can to change people’s prejudices and encourage others to do the same.
This article is from
the November 2005 issue
of New Internationalist.
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