I have read a lot of things about disability rights that say we aren't supposed to want a cure. I'm glad to have discovered that there are people who have a disability and who are happy to live with personal assistants, power wheelchairs and everything else adapted. But I want to say it's not a shame if someone hopes for a cure for their disability. I pray for a cure because it could allow my parents to live with more calm, without fears about my disability. It's not right if we allow other children to be born with disabilities without trying to find a cure to help them. I think that we should fight for our rights as disabled people but for the cure too. I would just like to go out without thinking if it was winter or summer. I would like just being able to breathe like healthy people or just to be able to dress myself on my own. Not necessarily walking. Not being a top model. I would like just a few simple things and sorry if it's not what other disabled people think but I want a cure!
The Odd One
Dear Odd One,
Of course you want a cure. It isn't odd that you wish your life were more comfortable, secure and independent. I don't think anyone would disagree that life sure would be easier if we didn't have disabilities ! The idea of a cure is a complex question, not because any of us wants to suffer but because how we address the search for a cure is directly related to how society thinks of our disabilities and how we think of ourselves.
I know there are people with disabilities who say that if a cure became available they would refuse treatment. To me that is a powerful, yet nebulous sort of statement. It's beautiful when we can be OK with our disabilities, when we can appreciate the lessons our disabilities are here to teach us, and when we can see our disability as an opportunity or even a gift; that we don't want to "fix" or discard. On the other hand, how can we really know how we would react to the discovery of a cure; especially when our disabilities involve a lot of pain or sickness? Do we have to reject a cure in order to prove we accept our disability?
Only recently, people with disabilities have begun to live in the mainstream of society. For most of history we were seen as hopeless, sick, defective or in-valid human beings, incapable of living productive lives because of our overwhelming "medical condition". We have been hidden in institutions, segregated from society, or simply left to die; for our own good". What the disability rights movement teaches us is that our disabilities do not need to prevent us from having a full, meaningful life. Disability is just one aspect of our lives, not an unmanageable tragedy or a shame; and we deserve the same freedom and opportunities in life anyone else has. Although our prospects have improved and it's wonderful that we have laws such as the ADA, it's sad that we must have these laws in order to assure our rights as equal human beings.
The opposition to a cure is really about the idea that our disabilities are problems that must be solved, that we are not acceptable the way we are; to ourselves or society. This kind of thinking destroys our self-esteem and we can spend our entire lives waiting for a cure to make us OK. Another issue is the dishonesty of organizations who deny services to people with disabilities while funding questionable research and paying outrageous salaries to researchers and corporate executives. Further, organizations raising money for a cure often portray people with disabilities as pitiful, tragic, child-like sufferers who cannot possibly live a meaningful or positive life unless cured. This approach (while very successful in eliciting funds from the well meaning public) degrades and oppresses people with disabilities. To overcome discrimination society needs to learn our value, they need to know we do not simply live lives of tragic suffering but rather we are powerful, wise, capable human beings worthy of love relations, employment and equal access.
I agree that we should be able to fight for our rights as disabled people and hope for a cure. Unfortunately, in order for the search for a cure to be earnest we need first to be valued as people just the way we are. Once we are valued, it will be natural that barrier-free access, independent living services, employment support and even the search for a cure will become an honest priority.