Recently we were put into contact with an organization to help us with the application process for SSI (social security income) for A-Man and Baby M. The process has all gone fairly smoothly, and we will get some answers in a few months. The part that shocked me, other than something with social security going smoothly, was when I got asked a simple question.
How Long Has Your Child Been Disabled?
It hit me like a ton of bricks, and I really don’t know why. I’m well aware of the boys’ special needs. I know that SSI is for children with disabilities. I understand what is and isn’t considered a disability in my state. But when it was put out there so bluntly, it gave me pause. Disabled. Why did this hit me so hard? I am a fan of person first language. I am constantly heard ranting about how there is absolutely nothing wrong with having disabilities or special needs. I believe that A-Man’s autism is a gift as much as it is a challenge for him. Mr. C has a global developmental delay, so his development is months behind his peers. But disabled?
Disabled Still Has A Negative Connotation
This hurts my heart. We live in a culture where being disabled is one of the worst possible scenarios. In fact, when you get a diagnosis of certain disabilities for your child, the doctors start “discussing your options” and having “quality of life” talks. Why? Is it worse to be disabled than unkind? Is it worse to be disabled than hateful? Is it worse to be disabled than discriminatory? No. It isn’t. But we’ve all been so programmed to see disabled people as people less than the rest of society. It’s horrible when we stop to think about it. Even as someone who is so passionate about helping people with disabilities and special needs, the negative connotation hit me. Disabled feels like not-able, and I know that Mr. C and A-Man are both plenty able. I started understanding the people who use terms like “differently-abled” which I had never understood before.
Disabled Felt Prescriptive
One of the best things anyone told me as we were learning about A-Man’s autism was that his autism label was descriptive, not prescriptive. It gave us a clearer understanding of where he is at right now, but it does not give us any insight into where he will be in the future. Disabled seemed very final to me. If they’re disabled now, they’ll be disabled forever. It felt like a burden to bear instead of the gift that I see their differences to be. While I understand that A-Man’s autism will be a part of him forever, saying that he is disabled is saying he will forever need assistance to make it in society, and I don’t see that as true. Not to mention we don’t know the cause yet of Baby M’s delay, and we may never. He could “catch up” to his peers in a few years and never need another therapy again. We just don’t know. Disabled feels very final to me.
Overall, My Boys Are Disabled, And They Have Been Since Birth
I’m still not crystal clear on why the simple question hit me so hard, and I may never be. But my boys are disabled, and I love them. They were created exactly this way, they are not broken, and they have a purpose. They are boys. They love cars and trains. They hate dogs and other animals. One is a fish and one is petrified of water. They both get overly excited when we have Goldfish crackers, and they are both disabled. There is absolutely nothing wrong with any of that, and I am still not sure why, for a second when caught off guard, I thought there might be.
Have you ever received a question about your children’s disability or special need that gave you pause? Am I just a crazy person who over-thinks everything? Let me know!
I got the question “Can you drive?” from a sixth grader (I do Q and A with sixth graders). I said “No, but I plan on learning how.”
Anna recently posted…I was Forced to Become Right-Handed
That’s so interesting. It’s funny what kids can come up with to ask, isn’t it?
I remember feeling that way when my son was finally diagnosed with autism at age 15! We knew he had autism, but getting the official diagnosis was so…final. There was no going back now. Over the years we’ve just come to accept that Disabled is just a term that somewhere along the line someone made up to describe people who are different and, as you just realized to justify qualification for SSI and other disability resources.
Sylvia recently posted…Life Skills Goals For Independent Living Part Two
You are so right, Sylvia! I was prepared for feeling this way when we got the autism diagnosis, but I guess I was more prepared to hear that one. It really did feel final. So strange how a simple word can hold so much meaning.
Wow, thanks for sharing! It is definitely so tough trying to explain or pinpoint those feelings brought about by someone’s carelessness or insensitivity. You do an amazing job of speaking up for your children, however. Thanks so much for sharing!