Sif Hauksdóttir

@sifhauksdottir | contributor
Mother of 4 wonderful kids. Both my boys have Duchenne muscular Dystrophy, they are 10 and 11. Our 7 year old daughter has multiple food allergies, including life threatening peanut allergy. Then we have a 4 year old super active and funny daughter that has yet to reveal to us what she is going to use to get extra attention and need extra care like the others. Inclusion is very important to me, in all aspects of life. Raising 2 kids with a rare disease and 1 with life threatening allergy is a continuous learning curve for me as a parent. I am here to hopefully bring awareness to the fact that different doesn’t have to be worse and we can usually always look on the bright side of life.

The First Time My Son With Muscular Dystrophy Used a Wheelchair

That day. That day that has been in the back of my mind ever since my boys were diagnosed with muscular dystrophy is here. This morning, my son took his wheelchair to school for the first time, as walking the long corridors in school is getting too hard for him and draining his energy. Ever since their diagnoses, even from that very first day, for some reason the “he will have to use a wheelchair full time” sentence has always been portrayed as some sort of defining point in this process and progress of his disease. Usually, it’s a topic that is very lightly talked around in conversations, and always viewed from every point of view as a negative. Why is that? Him getting to conserve his energy, lessen the risk of falling, making him more independent in getting to and from the places he wants to go to. It is actually quite sad that from the day a parent is told of such a diagnosis, nothing is ever viewed in a positive light. Yes, he will need to use a wheelchair, but you know what, nowadays there are very good wheelchairs, and they even look cool. It will make him more independent, help him navigate society and be his own person. There is lots of other equipment that he might get to help him do the things that are hard, so yes, it will be a little hassle to figure everything out, but it should be fine. Not one professional has ever talked to us about the future in a positive light. Not a single one. Ever. And that is a problem in and of itself. We must stop viewing wheelchairs and being in one as a negative thing. It is not. Yes, it is different than what most people use to get around. But it is not worse. I want to quote a great article I read once, A Primer Against Ableism for the Duchenne Parent Community: “Walking is not better than rolling!”

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.