I am finding it more and more difficult to use words like “accessibility” and “inclusion” these days. Much of the problem with these words is that they assume an inside and an outside. If you’re “accessible,” to whom are you accessible? And if you’re “inclusive,” just who is outside that circle?
I ask these questions today out of a great deal of personal pain, feeling that very little inside the disability community is accessible to me or inclusive of me. I also ask these questions with a great deal of fear and trepidation, realizing that my already rather precarious position within the disability community could become even more precarious. But that apprehension has never stopped me before. I am, if nothing else, a perpetual outsider, because I will critique just about anything that I feel is out of kilter with stated principles or simply not working. I don’t engage in these critiques because I think my ethics are higher and better. I engage in them because if I don’t, I can’t ethically and emotionally navigate while maintaining my sense of who I am as a human being.
So here goes.
I am becoming more and more aware of how deep and wide is the chasm between my work in disability studies, on the one hand, and my work as a disabled person serving other disabled people, on the other. I split much of my time in disability land between working on a master’s thesis about disability culture and counter-narrative, and serving homeless and hungry disabled people who live in one of my city’s parks. As much as I love the academic work I’m doing — and as much as disability theory in general has enriched my life and my ability to understand all of the many forces that impinge upon it — there is very little connection between what I study and what I actually do in the world. Any time I’ve been in an academic program, this disconnect has troubled me, but it’s quite a bit more problematic when the field of study is about a pervasive political and social issue and not, for example, 19th-century English literature. What I am to make of the disconnect between my academic and social work? My current program, to its credit, emphasizes bringing theory into practice and yet, I find that there are not a lot of role models for how to do so.
In addition to this disconnect (or perhaps because of it?), I find that, even within disability studies and disability culture, I feel a sense of apartness. To begin to describe why, let me direct your attention toward where the last Society for Disability Studies conference was held: Orlando, Florida, just outside the entrance to Universal Studios.
For those unfamiliar with the needs of many neurologically atypical people, may I be blunt? Having a conference outside of the entrance to Universal Studios is rather like saying, “We’re having our conference across the street from the gates of hell. All are welcome!” Does anyone have any idea of the aversive impact of noise, crowds, visual overstimulation, and other sensory assaults that provoke an immediate OMG get me out of here response on the part of a great many of us? I’m not just talking about autistic people. I’m talking about people with a wide array of sensory, cognitive, chronic pain, and fatigue issues. Having a conference in such a place renders that conference inaccessible to many of us.
Apparently, this fact is not yet on the radar, because the conference organizers advertised the venue as the perfect place to talk about our “various realities”:
This year’s theme is “(Re)creating Our Lived Realities.” Playing off our particular location of Orlando– the home of Disney World, Universal Studios, and Epcot Center – this year’s conference theme seeks to explore the myriad ways in which we work to (de)construct the various realities in our lives.
Any place within 50 miles of Disney World, Universal Studios, and Epcot Center is going to be a no-go in terms of a conference for me, because using up all my spoons just to get in the door is not how I see accessibility working.
But then, of course, even if a conference or performance takes place in a more appropriate location, there is the inaccessibility of the conference or venue itself. For those of us with sensory and social differences, this inaccessibility is not limited to SDS by any means. It is pervasive. There is no thought given to the fact that walking into a venue with 20 or 50 or 100 or 500 people talking and socializing at once before the talk or the performance starts would put some of us into an overloaded, overstimulated, exhausted state. So what choice do we have? Walk into an inaccessible environment that causes pain and exhaustion? Or stay home?
Of course, there is just the appearance of choice here. There really is no choice for me. A performance venue or a conference might have ramps, ASL, CART, and any number of other accommodations, but I literally can’t walk into a sound-rich environment. It’s like a force field. It renders a venue just as inaccessible for me as if that venue did not have a ramp for wheelchair users. Walking into that kind of environment, and actually staying there, would be analogous to wheelchair users dragging themselves up the stairs in the absence of ramps and trying not to look too exhausted in the process. Possible, but hardly dignified, safe, or optimal.
Are my disabilities not as important?
A couple of weeks back, my friend Bill Peace wrote about an experience of being humiliated and excluded as a wheelchair user at the Humanities, Health, and Disabilities Study Workshop held at Hobart and William Smith Colleges. I shared his outrage over the treatment he received. A lot of people did. But I wonder where the outrage is for people such as myself, who could putatively walk into such a conference, but who could not last more than a few minutes because of the sensory overstimulation, the inability to filter sound, the difficulties socializing in conventional ways. Because let me tell you, if you can’t do those things, you’re not even going to get close to such a conference in the first place.
I have watched for years while some of my peers with visible disabilities are able to navigate the professional disability world in a way that I cannot. Not everyone with physical disabilities can navigate that world, obviously, and these folks are hardly representative, obviously, but they are there and they are quite visible, and they have access because they are neurotypical. I have the intelligence, the drive, the passion, the commitment, all of it, just as they do. But there is this very thin membrane that keeps me from entering into that world, and that thin membrane is all about the fact that I perceive experience differently and have a completely different way of being in the social and sensory world.
It’s a source of tremendous grief for me. It’s like being this close to reaching something and always having it out of reach. I’m an incredibly tenacious person, and my tenacity will not get me past that thin membrane, ever.
So the question of “Am I a part of this community too?” runs very deep in me, and I feel very conflicted about it. On the one hand, I feel that people respect what I do, and I am amazed at the sorts of conversations I’m able to have online in various venues. On the other hand, I’m keenly aware that I am on my own, as I always have been — and I’m cognizant of the limited nature of what’s available to me in the disability community. It’s almost like watching my place in the community phase in and out. Up to this point, I’ve been stuck in the feeling of “Well, that’s just how it is. I can’t tolerate noisy public settings or socialize in conventional ways.” But now I’m thinking, “Wait just a second. That’s locating disability in my body rather than in the environment. Is there some good reason that conferences and cultural events have to be a sensory and social nightmare? Is there some good reason that they end up on the list of inaccessible venues, much like most nondisabled venues? Is there good reason to exclude people for social and sensory differences?”
And the answer is always the same: “No, there is no good reason at all.”
I’m still waiting for the outrage over this lack of access. But I have the feeling I’m going to be waiting a very long time.
© 2013 by Rachel Cohen-Rottenberg