I was recently part of a conversation in which another parent recently said, “I️ don’t want my child to know about their disability because they have to learn to make it in the real world.”
I hear this sentiment quite a bit, and every time, I respond with some version of, “I believe, with every fiber of my being, that my child MUST know about her disability because she has to learn to make it in the real world.”
It is absolutely true that the real world is not always accommodating to those with disabilities. Hell, sometimes, it’s downright hostile. We’re working on that, by the way. But here’s the thing, friends (come closer, this is important) ..
Whether or not you tell your child they have a disability does not affect whether or not they are disabled.
Stay with me. We’ll process this together.
If a child isn’t able to walk, not telling him that he can’t walk doesn’t make him able to walk, nor does it make him any less aware of his inability to walk than I promise you he already is. Trust me, a kid who can’t walk knows that almost everyone around him can walk and he can’t. (And the other kids? They know too.)
That said, if we refuse to acknowledge his disability for fear that it will make him disabled (which we’ve already agreed isn’t how this works) then we can’t talk to him about all of the things that he needs to know to make it, as a disabled person, which is what he is, in the real world.
He needs to know that there are myriad ways to be mobile that don’t involve walking.
He needs to know there are ways to make the world work for him, but that he’s going to have to ask for help, find the tools he needs, navigate complex systems that are fraught with pitfalls and obstacles and loads of cynicism and self-doubt.
He needs to know that he can can and must set exceedingly hard goals and that he can achieve great and awesome and wondrous things … and that he’s going to need some compensatory skills in order to do them that his peers may not.
He needs to know that he’s going to face bigotry, both overtly and in its more insidious form of quietly lowered expectations and that he cannot ever accept the limitations that ignorance seeks to place on him.
He needs to know that he will have to constantly fight back against the voices of ableism – both outside of himself and within, sometimes just by showing up.
He needs to know that he can, if he so chooses, be part of a vast movement of folks working on making the world a whole lot more inclusive.
He needs to know that there are people who can help him along the way and that there are ways to identify who those people are.
He needs to know that there is a whole world out there of people like him – who are disabled in infinite ways – who live amazing, fulfilling lives. He deserves to know that he can find those people and that when he does, it will feel like coming home.
And so every time I hear someone say that they don’t want their child to know about their disability because they have to learn to make it in the real world, I say that I believe, with every fiber of my being, that my child MUST know about her disability because she has to learn to make it in the real world.
I can tell my autistic daughter that she’s neurotypical until I am blue in the face, but it ain’t gonna change her neurology. What it will do is deny, or at least delay, her understanding of who she is, of why she looks and acts and feels so different from her peers, of why so many things are so challenging for her, of why some people just don’t get it, don’t get her. It will take away her pride in knowing that she’s part of a beautiful, vibrant community of similarly different folks. And worst of all, it will leave her vulnerable to a real world that is sometime downright hostile to those with disabilities, with no language nor framework for navigating it.