A Wheelchair Isn't a Bad Thing

Why is it that so many of us as parents feel sad, and even describe it as heart-breaking to learn that our child will end up in a wheelchair?

It has now been more than eight years since both my sons were diagnosed with Duchenne muscular dystrophy, Duchenne is a progressive muscle wasting disease that affects every muscle in the body. Boys with Duchenne usually need a wheelchair full time from the age of 8-13 years old, this is very different for each boy.

At the time, in August 2012, my sons were 1 and 2 years old. They would celebrate their 2nd and 3rd birthdays the following October and September.

The way we were told the diagnoses portrayed a wheelchair as a very sad and bad thing. They didn’t get the diagnoses on the same day. Our older boy was diagnosed first, and in that doctor’s appointment, at the very same time we are being told our son had this incurable disease, the doctor informs us this is something that can be screened for during pregnancy. I didn’t think anything more of it at the time, but as more time passed, I get angrier and angrier that this was something the doctor felt was necessary to inform us of at that very moment. What was the motive? Some sort of “Don’t worry, you can still try and get a ‘better’ child, a ‘non-defective’ one?”

In the past eight years, I have learned a lot. I think that some people might look at me as being in denial, because I do not feel sorry for my boys. This is just the way life is for them, and it is our job as their parents to never let them feel like they are any less of a person because they have a disability.

I have often wondered, why it is that we feel sad knowing our child or someone we love will need a wheelchair? Could it be that deep down we know how inaccessible society is for someone that needs a wheelchair and assistance in everyday life? Might it be that we know how much we will have to fight for them to get the same basic human rights as every other child their age? That somehow we know how unequally we treat disabled persons in our society?

I think this is something that is worthy of discussion and thought. We tend to feel sorry for disabled people, but who benefits from that? Certainly not the disabled person, not our society, not ourselves. I think we would better spend that energy voicing what is wrong in the structure of society that puts the disabled person in the situation that makes us feel sorry for them.

This situation is something man made, and therefore not permanent and unchangeable. Everyone would benefit more if we stopped feeling sorry for disabled people and instead tried to be more inclusive.