Max started shuffling his feet as we walked around Mariner's Pier this weekend in Wildwood, NJ. He tends to do that when he's tired, and by late afternoon, he often is. We decided to hit one more ride before leaving, and headed over to The Flying Galleon. After Max walked up the flight of stairs slowly (there was no elevator), we came upon a long line.
Because Max doesn't get wigged out by crowds as much as he used to, we sometimes have him wait on lines at amusement parks. I'd gotten us the alternate-access wristbands just in case and when he sighed and his body listed to one side as we stood there, I grabbed his hand and we headed over to the accessible entrance (aka the exit).
"Why?" Max asked as we stood at the gate by ourselves.
"Because you're tired and if you have special needs you can go in this way," I explained. It's a term I've used since Max was a tot, the one most people understand, although I've never been a real fan. I mean, don't we all have special needs?! Actress Lauren Potter recently summed it up in the "Not Special Needs" video she made for World Down Syndrome Day, noting that people with Down syndrome have the same basic needs as everyone else: education, jobs, opps, friends and love. (Choice quote: "If people with Down syndrome needed to eat dinosaur eggs, that would be special!") As Max gets older, "special needs" is also seeing immature. I've been making an effort to say "disability" when labels are required or straight up say he has cerebral palsy. Still, sometimes I automatically revert to "special needs."
Turns out, Max isn't so into the term, either.
"I don't have special needs," he informed me.
Wow.
Just then, the guy showed up to let us onto the ride. Once we were settled, I brought it up again.
"Max, sometimes people use the words 'special needs' to describe a disability," I said.
He looked perplexed.
"Max, it basically means that you have cerebral palsy," I offered.
"Yes!" he said, and we left it at that so we could relax and take in the scenery.
Max seemed to be taking this in a literal way: He doesn't have "special needs," he has "cerebral palsy." But as I sat there processing what he'd meant, I wondered if he'd been telling me he didn't want to be treated in a special way. Either way, this was another step toward owning his disability.
When we're out and Dave explains to, say, the waitress at a restaurant why Max is wailing, he'll note, "He's special needs" in front of Max, which drives me bonkers. Obviously, Dave means no harm and I am an editor/writer who cares deeply about word choice. Still, I dislike that it's describing the whole of Max versus one aspect of him ("he has special needs" isn't as encompassing). "He's disabled" seemingly has the same issue: It describes a person's entire being instead of one part of him ("he has a disability").
Ultimately, I am merely the parent of a person with disability, and whatever Max decides on will be fine with me. For now, he's still piecing together what it means to have CP. During the car ride home, I told Dave the story about going on the ride and again Max said, "I don't have special needs!"
I said, "I get it. You have cerebral palsy."
Max looked at me. He pointed to Ben.
"Will he get cerebral palsy?" he asked.
To be continued, as always.
Labels. They are so confusing and my advice is to let Max choose his own. For now it seems like he chose simply saying he has cerebral palsy instead of a broader term and that's great. Personally I will say I have hearing loss but I will call myself disabled or say I have a disability. But that's a more recent development. If Max's label changes or if he chooses a label such as disabled that you don't necessarily think is the best one, I would advise you to stay calm and accept it. After all, he's the one living with it.
ReplyDeleteYes, I aim to let Max lead the way! Whatever he choose will be fine with me. I love that he spoke up.
Delete"He's disabled" seemingly has the same issue: It describes a person's entire being instead of one part of him ("he has a disability")."
ReplyDelete"Disabled" describes certain aspects of a person like "7w8", "ENTP", or "SanChlor".
The problem with "disabled" is the same problem that many people have with typology systems. Many people go into typology thinking that one system will give them a comprehensive look at themselves when this is far from the case. Some people say that some systems are more "accurate" than others when they just prefer that system because it has what they're looking for.
Max chose "cerebral palsy" because that descriptor has what he's looking for, much like how I'm a LaHaye blends fanatic because that system has what I'm looking for.
Freedom of choice, all the way.
DeleteIt's exciting and, for me, familiar to read about Max's evolving view of himself and his disability. I hope this isn't too much of a shameless plug, but here's a piece I wrote earlier this Spring my own journey with disability language: http://www.rootedinrights.org/my-journey-with-disability-language-and-identity/
ReplyDeleteThanks, Andrew, and given that your writing is always illuminating and interesting, that's not a shameless plug at all.This was particularly interesting to read. I changed my mind about people first language because of a powerful argument I read on The Thinking Person's Guide to Autism about owning your disability.
DeleteMy 3 yr old son comment about his 2 yr old sister "Daisy doesn't have a leg brace" this week... it makes me realise that soon he will start to realise he his different to other children... I guess there will be many awkward conversations ahead
ReplyDeleteHonestly, these conversations are only awkward if parents feel that way/make them so. Children embrace both both what we say and how we act around them. One thing you can start discussing with your son is the many ways people are different—some of us have brown hair, some of us are blond, some of us like bananas, some of us love oranges, some of us are tall, some are short. Some of us have leg braces, some of us don't. That's what makes this world an amazing place, because everyone is not the same.
DeleteThis is the best post! Proud of Max!
ReplyDeleteMe, too, Kyle. I so WANT him to care. It's an evolution.
DeleteAnd proud of you, too, for accepting that. For whatever that's worth, anyway. It seems to be a rarity among parents of PwDs.
DeleteI appreciate how your insights constantly evolve as Max evolves. It's fun to follow the journey.
ReplyDeleteClarifying that I meant "as Max grows older and evolves in his thinking." :)
DeleteThanks, Emily! Your perspective is always welcome/helpful.
DeleteWe use Medically Complex more often than anything else (although I do find myself reverting to Special Needs more often than I like because it's the terminology much of his care team uses.) Medically complex covers all of my son's diagnoses (including CP), which is helpful since he is not quite 3 & we don't yet know which of those diagnoses is going to be the most relevant in which situations in his future.
ReplyDeleteI find myself using Medically Complex all the time too! It seems to encompass all his diagnoses for me right now. And I agree with Ellen above, "don't we all have special needs?!" But its also so interesting how words and phrases are acceptable and work at one point in time and then don't seem to work so well later once adopted. :)
DeleteThis was a very thought provoking post. I feel like I often say that my daughter has special needs, but then if we're out somewhere, I tend to notice that my husband avoids bringing it up... which you can sometimes do when your daughter is three... but we're getting to the point where it gets harder and harder to avoid the conversations, and I agree that precision of language (Giver quote anyone?), is important.
ReplyDeletePaige
http://thehappyflammily.com
This is the Giver quote I found from Goodreads:
Delete"“Even trained for years as they all had been in precision of language, what words could you use which would give another the experience of sunshine?” "
Hope you're experiencing sunshine today - the heat; the luminous...
This is the best post!I appreciate how your insights constantly evolve as Max evolves.
ReplyDeleteAs I always say, I continue to develop as a parent just like Max continues to develop.
DeleteI haven't got a fully formed thought except I can totally empathise with the challenge of knowing the best way to handle with your child. Thanks for sharing x
ReplyDelete