Notes From Your Friendly Neighborhood Inclusionista

Shannon Des Roches Rosa
twitter.com/shannonrosa

I want to make this as friendly as possible, so I think it’s important to start by clarifying terms: Inclusion, my lovelies, is a real and basic human right, and it simply means autistic and other disabled people have the right to be out and about in the world, and not segregated or hidden away as used to be the default for their community members. Inclusion does not mean forcing people like my high-support autistic son to be in places they don’t want to be, that aren’t set up for them, or in which they aren’t welcome.

But even when we embrace inclusion as a disability rights baseline, my son still doesn’t get to do all the things—but that’s because of accessibility barriers, not because inclusion itself is a flawed concept. Even though The Americans with Disabilities Act (ADA) installed accessibility as the law of our land in 1990, in practice enforcement is slippery (and imperiled, call your members of Congress), as wheelchair user Robyn Powell observes:

“Of course, passage of the ADA did not make ramps and elevators magically appear; nor did it immediately halt discrimination against people with disabilities. Progress takes time.”

Accessibility law is not accessibility reality. Photo © Richard Downing [Image: Two white women (one in a wheelchair, one sitting on the floor) in front of a museum exhibit that says, “Despite the success of 504 and the ADA, people with disabilities still do not enjoy full access and inclusion in today’s society.” The wheelchair user is rolling her eyes  and the other woman is making an over the the top expression as if she’s shocked by what the exhibit says.]

That gap between ADA law and universal implementation means people are right to be angry about how few places are truly accessible, as the situation really is completely f***ing frustrating and unfair. And so the battle must continue, on all accessibility fronts, so that my son and all autistic disabled people get to have All The Opportunities they deserve.

But just because something has been deemed “accessible” by ADA standards doesn’t meant it actually is. That has to do with another aspect of accessibility: accommodations. Take autism conferences: they should be autism-friendly environments, but few actually commit to the accommodations autistic people need, and which aren’t always stipulated by the ADA. Some planners will make a token gesture, such as having a quiet room; but most sessions, panels, and posters occur in sensory-onslaught environments, and very few happen in a way that would engage, or be accessible to, a person like my son.

All these barriers to accessibility and accommodations mean it’s not reasonable, at this time (and even when we’re not staying home because of a pandemic), to expect my son to be able to go everywhere, even places that openly want to include him. Even though my son has so worked so hard on his coping skills and boundaries, I still wouldn’t take him to places that I know are too taxing, like loud restaurants, crowded public festivals, or quiet concerts or ceremonies. Sometimes this means missing important family events. And while those situations can be bittersweet, they are also part of understanding what reasonable accommodations for him look like.

Not everybody understands my autistic son’s reality, which means we are constantly having to educate the people in our lives, and hope they will at least try to understand that our openly, obviously disabled dude is usually doing the very best he can. We can help by sharing information such as why some autistic people can’t wear face masks, why autistic meltdowns happen; why autistic “behaviors” usually have reasonable causes; why stimming can be joyful and therapeutic and not a behavior to suppress; why grabbing food is never OK, but sometimes impulse control is a thing despite knowing better—so our friends, family, and social media network will have realistic expectations about what he can and cannot tolerate. Inclusion isn’t going to get any easier if we let society dictate that autistic people can only behave like non-autistic people.

The more we’re out and about, the more we’re visible and cheerfully unapologetic about it, the more we show the world what inclusion looks like on autistic terms, the more other people will get what inclusion actually means. This includes (for me, at least) minimal patience with people who are uncool about my son being in places he has every right to be, and when he is not violating anyone else’s space nor causing a disturbance.

It’s also OK, on tough days, to retreat inside a circle of comfort while we figure out how to do better next time. For me, these comfort circles mean hanging with people and going places that both want and understand how to accommodate my sno. These circles may not always be as big as I wish they were, but that’s fine as long as they contain people who stick by us even when it’s not easy. Who understand that my son is the greatest dude there ever was, and also that there are some scenarios that don’t work for him. Like the small local grocery store with the cashier who has witnessed my son need to leave suddenly on more than one occasion, yet teases him about his teenage beard scruff; or the visiting friends who don’t mind that my son considers their guest room bathroom his bathroom, and who understand that when we accompany them to local tourist destinations, my son and I might cleave off a little bit. Or a lot.

What helps me when I get frustrated about the smallness of my son’s (pre-pandemic) circles is to remember that his generation has so many more inroads and opportunities than autistic people just one generation older: things like sensory friendly movie and theater showings, museum times, and adaptive surfing. These opportunities don’t work for everyone, and some of them are kind of the opposite of inclusion, but they exist, and at the very least they let my dude and his community members get used to those spaces and activities, and possibly lay the foundation for going to those places more spontaneously.

Boogie boarding with a A Walk on Water [image: my son, a white teen dude wearing a wetsuit, on a blue boogie board in the ocean, with the support of a Latino man in a wetsuit too.]

Some parents say they dream of things like an “autism island” where everyone gets their kids, and nothing has to be explained. While I get that impulse, parents choosing to segregate their disabled children in “intentional communities” is ethically thorny territory. I also get why some parents are conflicted, confused, or fed up about ‘inclusion,’ as some autism parenting spaces are hostile to that term’s use as a disability rights-specific adjective, as in (truly) inclusive communities, and inclusive education. This is why, as always, it’s important to look to autistic and disabled adults with lived experience about what best inclusion practices look like. Parents who come from outside the disability community are too often not the experts or role models our children need.

I call myself an ‘inclusionista’ because I want my son to be included, and also because that continues to be a somewhat radical stance. For his inclusive reality to happen, we need to think about inclusion the same way we think about feminism, or fighting racism: as centering basic human rights, and as the default right thing to do.