Disability and Representation

Changing the Cultural Conversation

Inattention to Accessibility: Am I Part of the Disability Community, Too?

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

    12 comments already | Leave your own comment

  1. 11/25/2013 | 5:48 am Permalink

    Thanks for this Rachel! When I can get to a conference,I can often only attend a couple of talks and spend much of the time in my hotel room, which I have the privilege to have been able to go to and which comes at a high financial cost. The alternative – ‘time-out rooms’ has not at all been appealing to me (although I can in some ways appreciate the effort but is effort always enough?), it is a private room that is usually on public display and it is a shared room (a shared private room made public to time out in)! I don’t fully understand it. The majority of the time I have been fortunate enough to have had some place to retreat to, but what happens when you can’t and you are far from home (which has also happened). The experience can be very distressing, and physically exhausting. I appreciate your honesty and am really glad for this post. In solidarity.

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    • 11/25/2013 | 5:50 am Permalink

      And by privilege I mean I recognize the privilege of being able to have a room, a privilege gained as the result of bursaries available to graduate students.

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  2. 11/25/2013 | 7:34 am Permalink

    If it’s any comfort to you, you are not the only person with these issues. People with a legitimate claim to respect me cannot behave in this way. My opinion remains that people in the “helping” fields often (not always) provide all kinds of support unless it impacts their own behavior. At that point, you and I find out who is committed to respecting us.

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  3. 11/25/2013 | 7:56 am Permalink

    I have only recently discovered your blog, and I love your ideas and especially your sense of humor. I’m interested in disability rights and pride, but I’m not disabled, and I have much to learn. My question is, how could things be changed to accommodate you and other neurodiverse people? Obviously, choosing a venue that isn’t an inherently overstimulating environment (Disney, Universal) is a beginning. But how would you prevent a conference of lots of people from being noisy and crowded? Or rather, how would you and people with your sensibilities best be accommodated in such an environment? I have a feeling the solutions need to come from you, because if other people who don’t have these sensory issues come up with ideas, they are likely to miss the mark.

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  4. 11/25/2013 | 11:17 am Permalink

    You got me to thinking.

    I don’t go to CFS-related conferences, because just getting there would then require a nap. And every two hours I need the same, just to be able to be semi-coherent. I can’t stand around. I can’t handle large groups of people.

    This means that I, too, am effectively silenced.

    In addition, pulling out anything useful from a conference that lats a day (typical) and is packed with information, is simply not possible – I can’t process the input fast enough.

    I simply don’t go – but that also means I keep any contribution I might make from happening.

    Possibly a way to attend by video would be useful for us?

    We could watch presentations (not necessarily in real time), and our questions could be included from a distance.

    Since you have identified a serious problem, have you thought about what would allow you to participate – as separate from what would allow you to attend? Even small group interactions MIGHT be doable via video – while still attached to the actual conference with all those hyper ‘well’ people running around.


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    • 11/25/2013 | 4:35 pm Permalink

      After I posted, and thought about this for awhile, I came to the idea of being involved ‘virtually’, but I wasn’t sure if people would find that unacceptable. So many businesses and other organizations are making virtual participation an option, having nothing to do with disability, though, so maybe that could work.

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  5. 11/25/2013 | 12:02 pm Permalink

    What particularly annoys me is the way at many conferences that even when you are speaking (which practically compels attendance) you still have to pay, food, conference fee, travel and accomodation.

    There is sometimes a presumption somewhere that the attendees University will pay. That is just passing the buck, mine doesn’t.

    I am aware that many conferences, such as Normalcy are organised on a shoe string budget and need fees to cover costs, but even so, this is a huge problem in the field of Disability Studies and a shadow over it’s accessibility. There are so many hurdles to be overcome, there is to my mind a danger in Disability Studies becoming increasing isolated from the base from which it grew up as a genre, that of disability activism. It could well end up yet another academic pursuit that excludes the people it studies.

    It’s not just conferences and University fees either, it is access to libraries, journals and the whole apparatus.

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  6. 11/25/2013 | 12:37 pm Permalink

    Other than simply providing quiet rooms to which people could retreat when it all becomes too much, how could such an event be made truly accessible and inclusive for you? How could it be made easier before you ever walk in the door, before it does become overwhelming? What more can organizers do?

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    • 11/25/2013 | 3:05 pm Permalink

      Hi B. Burton — We’ve been discussing ideas on the Disability and Representation Facebook page, so I’ll cut and paste a few things I wrote there:

      There are some really basic things — like creating quiet spaces before performances, for example. If I walk into a performance space in which people are taking all at once before the performance, I’m exhausted before the performance actually begins. Same goes for a conference. Is there some reason that people have to incessantly talk just to fill up quiet space? Or could we not just have quiet before the performance or the discussion?


      I think that cutting down on visual stimuli would be helpful as well. By choice, I tend to navigate pretty clear and open spaces, and when I end up in a place with too much visual stimuli, I really notice how much difficulty I have filtering it. It’s not nearly as difficult as filtering sound for me, but it’s there. I think that for neurologically atypical people, a certain amount of simplicity around sound and visuals is where it’s at.


      I wonder whether a visual stimulation issue couldn’t be solved by making talks accessible via a platform like Skype, which could focus in just on the person speaking and not on anything else in the environment. If you can’t navigate too much stimulation [such as CART and ASL provided for a speaker], you could have the talk right on your computer and and focus on that. Or even be in a less visually stimulating room but have access via Skype for listening, asking questions, and engaging in discussion. [That way, Deaf and audiologically atypical folks could still benefit by looking right at the interpreter/text, and someone who gets overstimulated by too much visual stuff could participate without having to see it.] In fact, I think that many of these things should be accessible remotely, for people who don’t have the spoons or the money for travelling…

      I don’t find quiet rooms all that helpful in terms of access. They’re more a refuge from lack of access. If I’m in a quiet room, it means that everything else is going on without me. What’s the point of being at a conference if I’m going to be alone? I can do that anywhere.

      I think it’s about getting everyone’s access needs on the table and then figuring out how to create spaces where everyone can get what they need. There will always be conflicting access needs, but disabled people seriously know how to adapt, and I see no reason that we couldn’t find creative solutions if the problem were taken seriously. There are already tons of unwritten rules that work against many of us, and the point would be to broaden those rules and to create multiple kinds of spaces, in the same venue, in which people might feel comfortable. Not everything in any one venue would be accessible to everyone, but something would be accessible to everyone. I think it would take getting over the all-or-nothing notion of access, though. And it would also take locating the center somewhere other than where it currently is.

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      • 11/25/2013 | 4:42 pm Permalink

        “Is there some reason that people have to incessantly talk just to fill up quiet space? Or could we not just have quiet before the performance or the discussion?” Your sense of humor is spectacular, but I’m sensing this is just an earnest question. Nonetheless, I find it amusing. Yes, people are compelled to yakity yak yak yak. I know I’m guilty! It’s nearly impossible to get people to be quiet prior to a time when they know they’ll have to be quiet. It’s almost as if they are more chattery because they are aware they are going to have to be silent and listen for a spell! It could be that’s comforting to them in the same way you would be comforted by the quiet…but for some reason, the chatter is more ‘typical’.

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  7. 11/26/2013 | 8:55 am Permalink

    Thank you so much, Rachel, for raising these crucial access issues.

    In my experience coordinating access at a science fiction convention, there’s an essential paradox. It’s hard to create an accessible space until the space is already accessible. That’s because folks who require access have to test and compare the initial access against what they need. And that’s why it’s critical when people can put into words why the current setup isn’t working.

    Event organizers must:
    1. trust the suggestions of those with lived experience
    2. accept that they can’t evaluate access for at least three repetitions
    3. assume that the shape of access will always change
    4. commit to access as organizational-wide and never-ending

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