I struggle with disability-related language.
I know I’m overthinking it significantly, but the way I talk about my son directly impacts what people think of him—and that’s important to me, especially because he can’t really talk for himself.
Commonly used words and phrases are: son with disabilities; son with impairments; son with special needs; and so on. All of those feel incomplete or wrong.
My son isn’t disabled; he’s not broken—there’s lots of stuff that he can do. And really his impairments don’t become disabilities until he interacts with a world designed for and built by able-bodied individuals.
The concept of "special needs" bugs me because in some sense all kids have special needs. My oldest son is incredibly sensitive and my youngest daughter has to sleep with her face buried in a pillow. Those are all special needs, right?
This isn’t a new struggle—it’s something that I’ve spent hours thinking about since the day my son was diagnosed. And I realize that it’s less about language and more about me wanting to do my absolute best to advocate for my son. I want so badly to advocate for what he needs, and all I can do is to advocate for what I think he needs. What if he doesn’t like the language I’m using? If I’m his voice, shouldn’t I know how he would want to be described?
Really, at the end of it all, I have to remember that my son is not defined by his disabilities. They are a component of who he is. He is a loving, mischievous, little man with a hearty belly laugh. He loves his brother and sister and loves to wrestle and be tickled. He’s more like a “normal” 4-year-old than he is different. That’s what I want people to know about him, instead of some abstract label based on what he can and can’t do.
I suppose this internal struggle I have about defining him will go on until he has the voice to define himself. Someday he’ll be able tell people who he is and what he wants to do and what he wants others to understand about him. He’ll be able to define himself, not based on his abilities but rather based on who he is inside as a person.
Our children are so much more than the labels that they are given in hospitals, by doctors, or in school districts. They are more than just complex medical cases and diagnoses. They are more than anyone often gives them credit for.
I look forward to the day when my son defines himself.
In the meantime, I’m going to work my hardest to make sure I’m doing everything I can to be the voice I know he has within.
After my daughter passed away, I also lost my own identity and purpose in life. How do you go forward from there?
To advocate for our children, we must be informed and active in the decision-making processes—from local to state to national concerns. There are tools to assist in finding helpful resources.