I walked into our dining room to feed Cruz, while keeping an eye on Coral and Tate playing together in the living room. They were wrestling around. Tate threw a big blanket over Coral and then helped her get it off, at which point he wrestled her to the ground. She was smiling and giggling.
I gave Tate a quick reminder, “Remember Tate to read her signs. Is she smiling? Does she seem like she wants to keep playing? She won’t use words to tell you to stop, so you need to pay attention.”
Between breaths Tate replied, “I know Mom. I’m teaching her how to escape a kidnapper. This is important.”
I continued to feed Cruz, as they played together. Then I heard Tate ask Coral, “Why can’t you be like a real human and cry?”
I quickly peered over into the room. “Tate, what do you mean by a real human?”
“I just mean that real humans would be crying by now I think, but she isn’t,” he answered.
“Who are real humans?” I asked.
He paused, seeming to not have the words.
I continued, “Because Coral is as much a human as anyone else.”
“Oh yeah, Mom. I know she is a human. I just meant,” he paused seeming to search for the words. Then they came to him, “I meant someone without Dup15q.”
“Okay, so you can say a non-disabled person,” I said.
“A person without disabilities,” he said.
“Yes, you could say it that way, too. You want to make sure you think about the words you use. Do you see how Coral would feel badly if she thought you were saying she wasn’t a real human?”
“Yeah Mom, but that’s not what I meant. I know she’s not like a robot. I meant a person without disabilities.”
“Okay. Remember, your words matter,” I left off.
Tate returned to his important play—teaching Coral how to evade a kidnapper. I decided to save the talk on Coral’s high pain tolerance and her different sensory needs (why she loved the wrestling and wasn’t getting upset or crying, as Tate thought she might) for later that day.
This interaction with Tate reminded me of two important things.
First, when we talk about disabilities and disabled people, the words we use really do matter. For a while now I have stopped using the phrase “special needs,” as I learned that many disabled people find it offensive. Avoiding the word disabled (and replacing it with ‘special needs’) stigmatizes the word disabled. For people with disabilities, disability is a part of everything they do, every part of life. Saying the word disabled also acknowledges the long road disabled activists walked (and continue to walk) to gain certain civil rights. It is acknowledging a culture and a community.
Over time I have also become aware of person-first (child with autism) versus identity-first (autistic child) language. There are many autistics who prefer identity-first language. When in doubt, it’s okay (and good!) to ask a disabled individual their preference.
Learning about the words disabled communities prefer and then using those words is paramount to respecting and embracing this community.
Second, it reminded me that our society continues to be soaked in subconscious stereotypes of disabled people. The able-normative view of disability tells us (all the time) to various extents that being disabled is something to be changed or fixed and is a burden on society; it equates to a less valuable life.
The supercrip narrative reinforces this by applauding a person for “overcoming their disability” for the purpose of inspiring able bodied community members.
When I look around at the opportunities (or lack thereof) for disabled adults, I am saddened. Adults with intellectual disabilities are especially funneled into the “four F’s” jobs—food, filth, flowers and factories— regardless of whether they are interested in any of these jobs. As a society we seem to struggle with starting from a disabled person’s strengths and helping them grow and find purposeful, meaningful work in their areas of interest; work that capitalizes on the unique set of strengths they bring to the table. (Learn more at meriahnichols.com).
Within our house, Coral’s disabilities are embraced. Coral is free to live her authentic life—being loved and respected for exactly who she is. She has access to her favorite activities and toys, and we try hard to help her communicate her wants and needs. We try our best to meet her diverse sensory needs and to recognize that her actions may be different because of her needs (not that her actions should change merely to meet our expectations). Tate sees all of this in our home. He also interacts with Coral in a very “typical” big brother way, a rhythmic combination of play and antagonization.
But when he steps outside of our home, he sees a very different world. Tate is soaking up this world, too. It’s a world where he doesn’t see any disabled kids like Coral at his school—kids with multiple disabilities or non-spoken autistic kids.
It’s a world where people don’t take the time to (or don’t care to) understand what Coral needs to access the world around her.
It’s a world where we have to extensively plan to take family outings because we know that the event, party, or place will probably not be set-up to support, respect and accommodate Coral’s disabilities.
It’s a world that disables Coral, through its expectations, its fast pace, its inflexible nature and its ableistic views.
Little by little, Tate is seeing all of this, whether he has the words to express what he sees or not, and he’s soaking it all in.
By listening to the disabled community’s experience, we are able to give him the words he can use and to explain to him that, “No, it doesn’t have to be like this. It shouldn’t be like this.” Otherwise, he is left with “real humans” and “not real humans.”
A few months ago, when I was driving Tate to school, he said, “Mom, sometimes I wish Coral didn’t have Dup15q because then she could go to my school.”
I replied, “It would be nice if she could go to your school, Tate.”
Tate then quickly said, “But I don’t really want her to not have Dup15q. That’s her special thing that makes her Coral.”
He paused, “But maybe just not for a day, so she could come to my school. Because that would be fun.”
“Well, maybe one day Coral can go to your same school, even with Dup15q,” I answered.
Maybe, one day. One day.
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More Grace to you There is Ability in Every Disability