With the onset of social media, which has been great at getting conversations going both within and outside of the disabled community, I’ve noticed a topic becoming more and more prevalent: the idea of not wishing to get rid of your disability. Though I understand this point of view, I can’t say that I personally agree with it. For one thing, I hope desperately for a cure for all of the young men living (and dying from) Duchenne’s. No parent should have to watch their child go through that and no child or young person should have to go through that themselves. I could write a ten page dissertation on why but I’ll save that for another blog. For me, if a cure came through tomorrow that would give me full strength, essentially ridding my body of my MD, I would absolutely take it. If I could “turn off” my MD, even just for a day, I would.
One of the most frustrating things about living with a disability is the inability to ever get a break from it. Not that it’s some horrible life sentence, but I would give anything to just have one day where I didn’t have to think or factor in my disability in one way or another. I would love to be able to just spend one day at Disneyland and not worry about having to talk to a cast member about stairs or get a return time or just generally stress out. I have my good days where I’m able to just do it and not give it much thought and then I have my bad days where I feel like having to constantly think about my disability which can really suck the enjoyment out of everything. I can’t just get on a ride if there’s stairs in the queue at Disneyland. I have to figure out what I need to do or who I need to talk to avoid them. And I have to put my friends through all that with me. Before I go on a trip, I need to know as much as I can about the destinations and their accessibility. Even then, I still inevitably wind up in situations where there are stairs and I have to figure out what to do. I can’t even go to a concert without having to decide if I want to get the accessible seats and deal with skepticism or just try to get seats that aren’t up or down stairs. It would be nice to not have to think and plan and be able to just do.
Obviously this is not my reality and it likely will never be so I try not to think about it too much. I wonder if maybe my perspective isn’t beneficial to my overall view of my disability too. Maybe I should adopt the “I wouldn’t get rid of my MD if I could” mentality. Maybe my desire for my life to be easier and to be able to do things like everyone else comes from fear and a little from laziness. I certainly am not one who likes to do things that are difficult. Maybe I still have some shame about my MD that I haven’t dealt with. I’m not really sure.
I do think we’re all entitled to our own opinion on the topic. I don’t think there’s necessarily a “right” or a “wrong” way to feel (though I do understand how wishing your disability away can reinforce stereotypes and ignorance able-bodied people already have about us). It’s hard when you have to deal with something day in and day out though. Something that just isn’t easy…there’s no way around it. Something that can be stressful and make it hard to enjoy even the simplest of things. I think it’s completely fair and normal to wish that away sometimes.
It’s a complicated way to live and it’s certainly a complicated topic to address and to try make sense of so I’m sure there will be more blogs to come on the subject.