“I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people.” – Stella Young, Disability Advocate
I love that quote from Stella Young, a major advocate for disability and a woman who had Osteogenesis Imperfecta. We lost stella in 2014, but I will never forget how empowered she made me feel about OI and disability and Finley. If you want to learn more about her, watch this Ted Talk. It is awesome.
Stella preached on this sort of thing and I whole heartedly agree with her. When we are just so happy disabled people have decided to not give up, we are “inspired” and congratulate them. Now, this is tricky business, and I don’t want to act like it is an easy mental thing because there are honestly days that I do congratulate Finley for getting out of bed. Those first few weeks after a fracture when he’s getting back on his feet, I do encourage and pat on the back for things that other kids wouldn’t think twice about. But that is rare and I quit as fast as I think is possible.
Part of this fight is expecting more from children who experience disabilities and their friends and families. For instance, chores. Finley needs to feel his burden in this house too. Responsibility is key. He needs some skin in this game. The alternative is to treat him like a “super special snowflake” (Credits: That’s a term from my work buddy, Lee) and give him a trophy for not getting hurt today. No, the reality is this kid will need a job. He will need and want respect from others. He must have respect for himself. And although it is hard to give your kid who could get hurt from just about anything a JOB to do, it’s a must. Whatever your kid can do—make him do it.
Finley’s chores look like this: Dust things within reach (I give him a list), fold the small towels and rags, sort through laundry for your undies, cut veggies at the kitchen island, pick up the floor in your room, etc. These aren’t huge tasks and it would be easier if I did every single one. And I realize this is more than some kids, but less than others. That is just what my kid can do. What can your kid reasonably do to feel like part of the team and to truly earn the respect he wants and needs?
I hope in class he is being asked to do his share. I hope his friends don’t do him loads of favors. Let’s just remove emotions from the question of “what can you do” because getting upset about it won’t help and feeling surges of sunshine for hardly doing anything is no good. I am expecting normal things from him and so I have to treat him normally within reason. That means expecting from him, what I expect from my able bodied daughter.
Disability doesn’t need your congratulations or your applause. What it does need is your respect. And from the side of the disabled parent, we can start the demand for respect early with our kids by demanding more from them, expecting the same from them and not patting them on the back for everything they do.
I’m curious what other parents of disabled kiddos ask of their children when it comes to keeping the house in order. What responsibilities have you give your little one?