Occupiers: How Do/Will You Represent Me?

There is so much happening all the time in the Occupy movement that it’s hard to write a complex, well-written post that encompasses what I want to say on any one topic. I have decided, therefore, for some of the issues that are huge, encompassing many pieces, to try to write short posts as part of a few series. I keep coming back to two main issues:

    1. What do I personally want this movement to achieve and how do I articulate that?
    2. How can I and others with disabilities participate actively and convey to the larger movement our place in their ranks?

Of course, these issues overlap a great deal. A lot of what seems promising and exciting about the movement is the potential for great inclusion — of people with disabilities (PWDs) and all people. And if the movement itself — the process, in other words — includes all people, including PWDs, then the outcome will, too.

Where I feel some of the most opportunity for this is the frequent comment that those visible in the Occupy movement are also representing those of us who are less visible. This post will be part of my process of trying to address these issues.

Today, I pose the question to those in the Occupy movement who want to be inclusive and help represent us all: Is this something you really are committed to? Are you open to looking within and confronting the uncomfortable feelings that may arise when you realize that your experience is not my experience, and to really represent me, you will have to learn some ways in which I struggle and you do not? (I am aware that there are many ways others struggle, and I do not, and I am trying to open myself to those experiences, too.) And, taking that very important next step, to take on “my issues” as your own? As the movement’s own?

For today, I will just pose the questions. I hope to follow this post with several on specific aspects of inclusion/representation that concern me. I very much encourage others who want to post on this issue to comment here or email me at occupiehome at gmail dot com. I particularly welcome people whose experiences are different from mine, for while I am trying to be cognizant of my privilege and be inclusive, I know I will sometimes make mistakes and oversights.

It is the process of openness that I have so much valued in some of the aspects of the Occupy movement. I frequently hear people say, “I, a person at an encampment, represent many people who aren’t here.”

Mostly, I appreciate this very much. I appreciate the recognition that there are many of us who want to be there, but cannot. As someone whose disability causes me to be isolated and invisible to a great extent (partly due to the disabilities, themselves, and partly due to structural/societal ableism), it’s very important to me to be “counted.”

For the same reason, I often feel uncomfortable when I hear that someone is representing me. Usually, the person I hear or see saying this is a man, usually a white man, usually not a man who identifies as having a disability or being LGBTQ. Of course, I know this is not true across the board, but as a woman, a lesbian, and especially as a person with disabilities, I wonder how much these other occupiers really are representing my interests. Do they know what it’s like to have their work undervalued just because they have a voice in a higher register? Do they know what it’s like to be assumed to be “attached” to a man and have people’s interactions with them change instantly when they meet their partner?

Most of all, do they know what it’s like to live in a society where they are considered by many to be disposable — where, when someone with a disability is killed by their parent or caretaker, it’s considered justifiable, a mercy killing? Where their lives are viewed as a tragedy or a “human interest story” of inspiration? Do they know what it’s like to have everything they do be policed by a bureaucracy, which can and does include things like transportation, reading material, getting food, and moving about in one’s own house? To be stuck at home, deprived of human contact; or, the flip side of the same coin, to be stared at, asked prying questions of, and be treated like a freak? To lack access to the basic information of news, entertainment, and other aspects of communication that mean being included, safe, informed, and counted in society?

Whenever I or someone else here has written about disabilities* access, or I have talked about it recently with nondisabled people in the Occupy movement, I have been asked or told, “Well, how do we provide you access? Give us a list to work from. Tell us how to do it. You have to organize this; that’s how it works.”

In some ways, I understand this. This is an anarchist or leaderless movement. There are many details to be coordinated. It’s helpful to be given concrete information about what to do and how to do it. There might also be concerns about not coopting an agenda or strengthening the idea that people with disabilities can’t take charge of things on our own. (Thus the disability rights movement’s slogan: “Nothing about us, without us.”)

At the same time, I’m tired of telling people what to do, how to accommodate or provide access. I’m tired of referring people to the same websites, books, brochures over and over and over. I feel hurt and angry when the message I hear seems to be, “This is not my (a nondisabled person’s) problem or issue; this is your issue. Therefore, you must solve it.”

I want disability access to be a communal value — a universal value of the Occupy movement. Indeed, I see no way for the Occupy movement to truly succeed without true integration of Deaf and disabled people.

I want to hear from nondisabled Occupy people, “I am committed to being an ally. I want to learn how to create access for those who can attend in body as well as for those who cannot. I am willing to put energy into creating wheelchair access, environmental/chemical sensitivity access, blind access, Deaf access, access to people with autism, access to people with mental health disabilities and/or psychiatric survivors, access to people with developmental disabilities, access to people who are chronically or severely ill and cannot attend events in body. I want to learn how your struggle is my struggle. I want to learn how ableism is an oppressive force for all people and is harming me, even though I don’t have a disability.”

To those who say, “I am representing you,” I would like to hear from you: “I care. I am opening my heart. I am opening my mind. I am listening. And I am committed to seeking out information — reading books, watching movies, subscribing to blogs — about and by people with disabilities and the disability rights movement.”

I mean this quite literally. Please post it in the comments. Are you with us? Truly with us?

Please post and tweet this to your friends and ask them: Are they aware of the people who are not yet included fully in this movement? Do they desire to learn from us and lend strength to our voices? When I hear that desire and passion to do not just what is easy, but what is right, I will feel so much more generous and patient in offering my energy, my resources, my time to educate you. I will start making those bulleted “to do” lists of access.

*I say “disabilities access” as opposed to “disability access” because there are many different types of disabilities, requiring many different types of access for us. An ambulatory person who is hard of hearing may require CART services, an oral interpreter, or an amplification system; a wheelchair ramp will not meet his need. Someone with multiple chemical sensitivity may need a separate area away from the generator, people who smoke or wear fragrance, and wind blowing in the right direction; a sign language interpreter will not meet her needs. A sighted person with fatiguing illness who needs a quiet place to rest will find no help from a Braille printout. Access and accommodation must be attempted to meet both universal access needs and individual access needs. We are a diverse community.

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About Sharon Wachsler

Sharon Wachsler divides her time between writing, activism, and dog training — passions that overlap. Sharon has been a freelance writer and editor of fiction, nonfiction, and poetry for two decades, focusing primarily on lesbian erotica, disability rights and culture, humor, and service dogs and their training.
This entry was posted in Accessibility, Disability rights, Hidden disability and tagged , , , , . Bookmark the permalink.

6 Responses to Occupiers: How Do/Will You Represent Me?

  1. Aimi says:

    I want Occupy to build a new world that has all of us in mind. I want it to build principles of universal access into everything it does. But I am frustrated with how hard it has been at my occupation to work towards access when PWDs are not able to access the forums in which they are being asked to ask for resources. I am frustrated with others speaking for me and for other PWDs, and the way that access has been hijacked by people with a great deal of privilege – always reduced to an individual accommodation rather than a systematic attempt to rebuild our social and built environments. I’d like to know how others are doing with this – especially when folks claim to be allies but they are only interested in doing things for us rather than recognizing what we are doing ourselves.

    • Sharon says:

      Aimi,
      This is such a wonderful comment. I’ve been meaning to respond all week! This is such an important issue you are raising — about systemic change and universal access and not treating disability access as an “individual problem” but as a globally recognized social justice issue.
      I, too, would love to hear from others what they are trying and how it is working at different Occupies. (And I now have “met” you through other channels, I think! So happy about that!)

  2. Jennifer says:

    i’m so glad to have found this blog!

    i’ve got disabilities that keep me from participating physically in my local occupy activities, so i’m following on twitter (easier for me because it’s mobile and easy to navigate with appropriate apps) and anywhere i can find on my laptop when i’m up to lifting and using it.

    i wish i had more constructive comments. i’m really exhausted but will return. again: so glad for this blog!

    • Sharon says:

      Very glad to have you here, Jennifer! I was keeping up for a while on Twitter but discovered there was so much happening that I couldn’t keep up. If you are interested in compiling “This day in Occupy” from what you glean on Twitter and posting it here or on our FB page, I would find that very useful, and I bet others would, too.
      Of course, I have no idea if that’s of interest or something you are up to, but I thought I’d throw it out there as a request for anyone who might be inclined.

  3. I do believe that http://paper.li/ has the ability to scan FB and Twitter for certain keywords. For sure for Twitter hashtags. Perhaps it can pull out daily #occupy tweets. Maybe for FB too?

    • Sharon says:

      Hey Shannon! That’s an interesting idea. I hadn’t thought of that. However, we’d get thousands of #occupy hashtags a day, and I think that would be waaaaay overwhelming to sort through. Unless you have interest and spoons in occasionally doing that and separating the wheat (or gluten-free grain of choice) from the chaffe.

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