A book was recommended to me a while ago called “Being Realistic Isn’t Realistic: Collected essays on disability, identity, inclusion and innovation.” One of the things that really resonated with me in the book is the concept that my son has the right to be disabled.
Think about that statement: He has the right to be disabled.
What does that mean? When we think of rights, we think of things that are ours—not given to us but things that are just ours. That we have the freedom to do things that fall within our rights.
And in this case, my son has the right to be disabled.
This is a powerful thought for me. It pushes me to rethink a lot of what I do with him. When I take him to therapy, am I asking them to make him less disabled? Am I hoping they will make him more like his neurotypical peers? Are his therapists asking him to meet standards that were never built for him in the first place?
For example: Sure, we could work for days and years on walking using a cane, walker or a gait trainer. I know that walking that way will never be a consistently productive way for him to get around. So why bother? Why not just adjust to his abilities and move towards full-time use of a motorized wheelchair?
He’s got the right to be disabled. Do I do a good enough job of respecting that right?
Disability is an integral part of my son’s identity, and I wouldn’t change it for the world. As my other children get older, it’s important for me to also understand their identity, respect them, love them and give them the guidance they need to become the adults they can be.
The same goes for my son with disabilities. If a disability is a part of who he is, then it’s time I respect that, appreciate it and affirm that part of his identity.
He’s got the right to be disabled and it’s my job to respect that right.
I’m not saying I shouldn’t have high hopes and expectations for him. Like with my other children, I don’t want them to be less of who they are—I just want them to be the best they can possibly be. That applies to my middle son. He’s got the right to be disabled and it’s my job to respect that right and help him be the best person he can possibly be.
Help your child be their best self by building their independence.
“Being a mom is like jumping out of a plane with a bunch of people who don’t know how to open their own chutes. So you fly around doing it for them. Then you hit the ground. But you don’t die. You get up and you cook dinner.” -Unknown
Categories: Family Support