The Importance of Disability

I just want to scoop up all the little children with disabilities in the world, and say to them “Your disability does not matter, go forth and live your life thusly.” Okay, I’d probably leave out the word thusly. That might confuse them, but you get the idea.

Today, I met a young girl online and through the course of our conversation she said: “my able bodied friends are so protective of me because I am their special needs best friend.”

There was so much about that statement that bothered me. I wanted to tell her that her needs were not special, they were just hers. Every child has different needs. None of them are all that special. The phrase ‘special needs’ bothers me almost as much as ‘differently abled’. Everyone’s abilities are different. No two people are the same. Setting aside one group of people’s abilities or needs as 'different' or 'special' is creating a line in the sand that does not need to be there. I wanted to tell her that if her friends were really ‘best friends’ then there would be no need for a label and that she shouldn’t waste her time on people that consider her a charity case.

I didn’t tell her any of these things though. I didn’t tell her these things because I knew it would hurt her feelings. I knew that even though these things were true, they went against everything she believed about herself. I didn’t tell her because I don’t know her. I did wish, however, that I could tell all of this to every other person in her life.

My friends are used to my rants about the well-meaning adults that are shaping the personalities and self-esteems of children with disabilities. Usually, they are prompted by something like this innocent conversation with a little girl, who didn't know what she should tell someone who wanted to get to know her, about her disability, then was confused when I said “nothing.”

Why does this child think that in order for someone to get to know her, they have to know her disability? Does it change the fact that she loves to dance, that her favorite color is blue, that she has a basset hound named Waldo and that she thinks brussel sprouts are totally 'oogy?' No, it doesn’t. But she tells them anyway before they even ask, because she, like myself, has been told directly or indirectly that having a disability is a really important part of who you are.

I am not trying to say that disabilities are not an important part in shaping who you are. They are. It just isn’t who you are. I feel like a lot of people, both those with disabilities and without, struggle with the difference. My experience with living with a disability has made me the strong, determined, empathetic person that I am; but it is the fact that I am strong, determined and empathetic that makes me who I am, not my disability. If my experience with disability had been different I might be a different person entirely. I have friends with disabilities identical to my own, but we are very different people because their experience was different.

Often I hear, “you’re not as disabled as me,” thrown out as an excuse for why I can do some things that other people with disabilities cannot. This is a horrible thing to say either to yourself or to children with disabilities. It is a result of believing that you’re disability determines who you will be. It’s not what we can do that determines our success or our failure in life. It’s what we choose to do with what we have. I often wish that I could just talk the parents, the teachers, the mentors, the brothers and sisters of those children who are growing up with disabilities. Then I remembered I have a blog so I thought that I would share a few things. These are my opinions and they are based on my experience and observations. They are not by any means criticisms.

• Let them do everything they can do. Even, if it’s hard. Even, if it takes an hour.  Just because it takes longer doesn't mean they can’t do it. My parents put on my shoes for me until I was nine. They might still be doing it if my Step-mom Sue had not told me that she thought I could do it and made me. I sat in the hall for an hour, struggling and sweating but eventually I got both shoes on and tied, by myself; and I have been doing it for 20 years now. Though, sometimes I still need a little help and that is okay. 
• Create an inclusive environment, not just at school but at home as well. If Bonnie and Clyde have chores then Mary should have them too. If possible, give them the same chores with adaptations to make them do able. I have a twin. We both did the dishes and the dusting and cleaned our rooms. We both cooked one meal a week. By doing this you are helping all your children because you are blurring that line that too often exists between those with disability and those without. Do activities together as a family, and not just activities that are disability friendly. (see my next point) 
• Be ingenious.  At some point the child with a disability is going to come across something their brothers and sisters can do that they can’t. Help them figure out a way they can do it. Screw shoes onto big wheel pedals, take a stool to the ice-skating pond, hell, bring the wheelchair. Teach your kids to adapt anything and everything so they can do it. Teach them to be ingenious. 
• Throw ‘special’ and ‘different’ and ‘normal’ out the window. If you want, write them on pumpkins, throw the pumpkins off a bridge and smash those suckers to smithereens. They are so unnecessary. The words, not the pumpkins. 
• Get rid of those expectations. This one is for all parents, not just those who have children with disabilities. Every child is going to be able to do some things and not others. We all are have different abilities remember? Just let them try, even if you think they’ll fail. Failure doesn't hurt as much as you think it will, plus they might just surprise you.

Now if someone could kindly assist me off of my soapbox, I promise that my next post will be a little lighter and a lot more fun.