PERSONAL NARRATIVE

The Cruel Double-Standard Behind Autism and Access

By Whitney ELLENBY

Recently, The Washington Post published my opinion piece My Son Has Autism. He Deserves Separate Sensory-Friendly Opportuni- ties which focused on why sensory-friendly (SF) opportunities should be the law of the land. The swift rise of vitriol alerted me to ways in which my message was being misconstrued on many sides, even by select parents who themselves have struggled with their children with autism in public venues. Here’s my take on the most common objections voiced to set-aside SF events:

This strikes me as reverse entitlement, an assumption so ingrained to those who so routinely take access for granted they don’t recognize it—the idea that being normal automatically entitles you to enter public venues and services of your choosing. Access is so routine many don’t appreciate the degree to which society is constructed to serve its typical members. So the entitlement starts with understanding that the Americans with Disabilities Act (ADA) was enacted to ensure all people have equal access to the same public venues, services, and opportunities that everyone else enjoys, with or without reasonable accommodation. A set-aside SF event is, to people with autism, what a wheelchair ramp is for those physically disabled—a means of access on their own terms. It ends when people with autism have such routine access to venues, services, employment, etc. that we no longer have to keep proving why we do indeed deserve, as one slo- gan cleverly coined, “to boldly go where every- one else has gone before.”

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Incidentally, there’s no guarantee when a busi- ness opens a show, restaurant, etc. that there will ever be enough typical patrons to make it nancially worthwhile, so an SF set-aside am- pli es the overall patrons, making the business more, not less, likely to succeed.

My son’s sensitivity is not the issue; it’s oth- ers’ sensitivity to him when he makes noise. The ability to use repeat exposure with head- phones is inapposite here because we weren’t allowed even a single full exposure, which is part of the irony; one reason our kids get soexcited and vocal at theater events is because they so rarely get the chance to attend. If, on the other hand, there were regular set-asides, many would acclimate with repeat exposure and even attend with the general public. We’re not talking about immaturity. This is about be- haviors associated with autism, which my son may never outgrow because they are not only what he does, they are who he is. And provided a reasonable accommodation exists, he de- serves access. Just like you.

Denigrating people with disabilities is not confined to our society—it’s a worldwide problem. In our society, it takes many forms, including exclusion from employment, recreation, residential living—and yes, that matters. The ADA governs equal access and opportunity, so the venue here could just as well have been a pub- lic pool, grocery store, etc. Access to an experience is distinct from the right to a ord it. No one should be excluded or forced to forfeit an opportunity in which the general public gets to participate simply by virtue of his/her (disabled) identity.

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PERSONAL NARRATIVE

6. He’s your kid. If you want him entertained so badly why don’t you just do it?

I do run exclusive recreational events for hun- dreds of families impacted by autism. But it’s very expensive, and I could use some help. The burden of inclusion of our disabled children belongs to all of us in a decent society; it’s a shared goal and expense, not reserved for the privileged norm. The same people who com- plain bitterly about my son’s behaviors resist providing him meaningful opportunities to grow. The reality is we cannot get our autistic children meaningfully integrated into society if hostility prevents us from even crossing the threshold. People who have never endured the excruciating feelings of being “spotlight- ed” in public or kicked out of a venue, to which autistic parents are routinely subjected, may genuinely have di culty understanding why set-asides are so crucial. I urge them to pause. Imagine being publicly excoriated for some- thing over which you have no control, fearing even entering a place and being shamed out, and knowing that the situation is not going to improve on its own. Ideas like SF set-asides may not have originally occurred to you, but under- standing what millions of families endure ev- ery day should evoke tolerance. A healthy dose of compassion doesn’t hurt either.

Ironically all those people listed could more easily access the show than my son. In large part because they involve physical versus cognitive limitations that don’t seem to be nearly as frowned upon. And I assure you that as the parent of a profoundly autistic child, I’ve been forced to come to terms with plenty of lost op- portunities in his future that so many take for granted—driving, attending college, independent living, caring for children of his own. It’s precisely for that reason that I refuse to settle for less or resign my son to the deprivation of those things he is capable of doing. Which is far more than you or he might imagine.

It’s always interesting to see how offended people are about opportunities which in no way eclipse their own rights but expand for others who don’t have them. With opportunity comes exposure; with repeat exposure comes acclimation; with acclimation comes rising to meet expectations set, though of course there is no judgment against those whose acclimation includes vocalizing, bouncing, apping, and roaming. The good news is we have strength in numbers, and I’m actually optimistic that SF set- asides will become the norm. Until then, I intend to keep exposing my son and others like him to all the riches to which they are entitled. And to all who so deeply resent making room for him in any form, I suggest you invest in a sturdy pair of headphones.