“Feel Good” Stories

I think I mentioned earlier, there’s been a lot of inclusion discussions among the Moms in the Down syndrome community.

Pardon the phrase in case it’s offensive, but this article written by a disabilities advocate was presented as a discussion point:
Inspiration Porn

The article is specifically about three practices that have become popular in American high schools and a familiar trope in “feel good” media:

1. High school students electing a disabled student to be Prom King or Queen.

2. Organizing and hosting “special” prom events, specifically for disabled students.

3. Allowing a disabled student to “run a play” with a sports team.

And three reasons the writer [who is an advocate for disability rights] has a problem with these practices. And frankly, they sort of rub me the wrong way, too:

1. They are all intended to be “good deeds” for people assumed to be stigmatized and unable to make satisfying social lives for themselves.

2. Media coverage of these events almost always focuses on the kindness of the organizers, relatively little on the disabled individuals these events are supposed to benefit, and not at all on the stigmas and barriers disabled students face every day in their effort to participate in school social life.

3. The events are often further interpreted as encouraging signs that “the kids today” may not be going to Hell after all … the premise being that on every other day it seems like they are, an unfair and insulting idea in itself.

I never thought about theses instances until I had Hannah... and now I see it in a different way. I do understand these practices are done with very good intentions... but it does feel a bit patronizing to me. As if they’re throwing these “poor kids” a bone. In Tim’s words, “I don’t want Hannah to be anyone’s mascot. I just want her to find true friendships.”

I also understand there are different types of abilities - so “regular” this and “regular” that for all kids really isn’t an option - and those are the parents who do appreciate those “special” occurrences. 

This Mom in our community had a great perspective:

I am also uncomfortable with a lot of those news stories about the prom kings or queens, particularly when the king or queen is unnamed, and the story really is about how generous and kind the neurotypical kids are for making such a 'sacrifice". Blech. But I think it's important to tread lightly when people are doing these things to be kind, and when they think they're being inclusive, even if we, the people with skin in the game, know they are not. Because slapping their gestures away or hectoring them without providing a truly meaningful, positive, actionable alternative will only alienate people who could be important allies for our kids down the road. So if the special needs prom is no good, what can we suggest to make the standard issue prom work for ALL kids with disabilities? And that's not an easy fix, because the needs run the gamut depending on the diagnosis, and despite the commonalities, what works for my kid may not work for yours, or hers, or his. My son needs different things than his friend Jack, who has CP and uses a wheelchair, or his friend Erika, who has autism. The challenge, as I see it, is not to just find fault with these things, but to effect meaningful change for the better. And that means a lot of heavy lifting for us, I'm afraid, because no one is more motivated to see things change than us. On a micro level, for me, that's meant pushing [my son]'s school to form a low-key sort of friendship club, where kids with disabilities and standard issue kids can do fun stuff together, but it doesn't feel like a service hours scenario. Ideally, the kids aren't even aware of the agenda. Given the current political climate, I think we've got to work at a grassroots level to make these changes happen.

So. These practices do bother me, BUT I will do my best to understand they are done with good intentions and use it to educate for a fuller understanding and meaningful inclusion - not just one-off “good deeds.”