A while back, I read an open letter to the family of disabled people. It was probably meant to be touching… It thanked the non-disabled family members for being okay with a life where everything is about the disabled person. If you look at it from a parent’s perspective, I get it, there are disabilities and illnesses that demand a lot of time… Time that can therefore not be spent with other members of the family, but apologizing for it, thanking everyone for being okay with it, it made me feel uncomfortable.
Firstly, not all disabilities have to fall in the category of time consuming disabilities, so if instead of teaching your disabled child to do as much for him/herself as possible, you tried protecting him/her at all cost, you alone are responsible for the consequences of that choice. Secondly, regardless of whether your child’s disability requires full time care or not, it is no one’s fault. The other members of that family did no more ask to be apart of a family with a disabled person than the disabled person asked to be that way. No one should feel like they need to be thanked for their saintly sacrifices and no one should be made to feel like they need to apologize for being different. It is simply a terrible thing that happened and just like the disabled person must deal with his/her disability, so must the family members of that person deal with having a disabled person in the family. Disabilities after all, don’t just happen to the disabled person, but it affects everyone. If you think that it’s unfair that you have to help your disabled sibling, perhaps you should also remember that it’s equally unfair that your sibling needs that help in the first place. “Life sucks for everyone… get over it.”
The problem is, that instead of teaching others that disabilities are not issues that cannot be dealt with, we teach disabled people that as the disabled, they alone are responsible for dealing with the effects of their disabilities… “What happened to it takes a village and all that?”
So I often find myself apologizing to non-disabled people for having to ask for accommodations that would inconvenience them. Would you as a non-disabled person feel like you need to apologize for having to ask for a chair to sit on while working or for a light to be switched on in a dark room? For the sake of the argument you might say yes, but the truth is that non-disabled people take it for granted that everything will be provided. You don’t know what it’s like living in a world where everything has to be adapted for your needs. It’s not just that I have to ask for accommodations… Non-disabled people complain about allowing my guide dog to accompany me to public places, when I ask for extra time to complete tests, I’m told to stop acting like a “naughty child”. I am told not to begrudge sighted people their sight, but no one tells the sighted people not to despise the fact that they have to design a world where I too have the same opportunities and privileges and at the very least a world where I have access to the very basics such as education, employment and public facilities. “Hello pot, meet kettle.”
I understand that you get frustrated by my limitations, I ask for more than you perhaps would like to give… but don’t you think that I get equally frustrated with being part of a society where nothing was designed with disabled people in mind and yet I am expected to rise above. I would very much like for things to be different, I would like to not need anything from others. What can I do? It is what it is and we simply have to get on with it. Making me feel like I am a burden and constantly reminding me that I am indebted to you, won’t change anything. “What’s that saying about learning to dance in the rain again?”
Maybe it’s time we teach our children, our friends and those around us, that disability is not something that should merely be tolerated, teach them not to expect praise for considering the needs of disabled people and teach them that disabled people are real people, with real feelings and above all else, just human. After all, no one thanks disabled people for making the best of the cards they were dealt and I don’t hear them complaining… I imagine that being disabled in this harsh world where it’s every man for himself, must be so much more awful than being able to do everything for yourself and occasionally having to lend a hand or give some of your time or simply have some empathy, understanding and make an allowance for someone that is not as fortunate as you are. “You just never know when the shoe might be on the other foot right?”