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contested community
The question was posed to me at a conference – a hard one to answer - “can people with disabilities really be a community?” This by a person who had worked with people with disabilities well over twenty years, a PT, an experienced and knowledgeable man. I didn't know how to answer him at first. It seemed obvious to me. I didn't answer him during the conference, actually.
To start with, it's not quite the right question. Some people with disabilities can choose to be a community, but asking whether all people with disabilities are a community is something like asking whether all gay people are a community or whether all people in a particular profession are a community. The answer is, only if they choose to participate in the community – only if they join the union, or join gay organizations and go to gay oriented events. Community, if not geographically based, is complicated to define and even more complicated to recognize. There are many competing definitions of community, but the most compelling are usually based on whether people share a common set of practices. So how do we answer the rewritten question – what community can people with disabilities choose to belong to? And what are some of the practices and interests that we share?
Do people with disabilities have common practices, or political interests, that could cause them to ally? Or, should they? Disability advocates hold that we have a common interest in getting laws that protect the rights of people with disabilities passed, like the Convention on the Rights with People with Disabilities (being signed Friday by Obama), the Community Choice Act (the issue du jour on the agenda of the major cross-disability activism groups like ADAPT and People First - it's very telling and interesting that this issue has received little to no coverage in "neutral" online sources. Googling CCA or Community Choice Act reveals radical sites and a few "sunlight" sites like the ones I linked to.), and the Americans with Disabilities Act. Finally, the Americans with Disabilities Act is particularly important because it was the first legislation to legally treat people with disabilities as a class of people who have common interests (for more on this look here). In other words, whether to ourselves we have common political interests or not, we now do to the US government, and it is frequently to our advantage to form groups to further such interests in whatever communities we choose to belong to.
As for the common practices, it's a little more complicated to recognize them, and often people don't until they've been around a lot of other people with disabilities. Most of them are subtle and are related to our being in the world, and many of them are not exactly generalizable to all disabilities. For example, many of us use assistive technologies to communicate, move, or otherwise be in the world, but the exact nature of these technologies and supports is diverse and sometimes may come into conflict with each other, as we often learn at conferences when there is a constant struggle for access between the needs of interpreters and people with communication disorders. Many of us also depend on extra time and extra rest to do the things we need to do – everything takes longer for most people with disabilities. Most of us are also used to having a diverse ecology of human supports in our lives in the form of medical and social service professionals, including PCAs, doctors, therapists, rehabilitation counselors, and others.
Given all these common practices and political interests, why doesn't cross-disability community often get off the ground? I would argue that it's because of a few reasons. First of all, we're still at a point where most people with disabilities have to work, and work really hard, just to meet their individual needs. Community doesn't always form until people have the spare cycles to actually band together and do things together. That said, there are small pockets across the nation where radical people with disabilities ARE forming communities – it's just very early in the movement yet, and has yet to hit the awareness of the mainstream person with a disability. Second, there's still a strong stigma associated with disability, and many people with disabilities don't like to be seen in the company of other people with disabilities because they are trying to minimize that stigma. Third, many people with disabilities frequently face barriers to community building such as obstacles to transportation and economic challenges.
How can online communities help meet these needs? The good news is that online communities can provide a place where people with disabilities can meet with less stigma attached. In some cases they provide anonymity; in some cases they provide a place where you can be your “real” disabled self, depending on the norms of the community. Also, for people who are lucky enough to have computers and Internet and appropriate assistive technologies for accessing them – as well as an appropriate educational level - they provide a place for accessing and building community free of obstacles like transportation.
And what are the limitations of online community in building cross-disability community? One of the limitations is that we can't experience each others' bodies, so while we can't see the ways our bodies differ, we also can't experience the embodiment that we have in common that is sort of crucial to building our community. In part this can be combated by using a virtual world platform or a platform with visual avatars that encourages visual representation of disabilities, but current embodiment technologies do nothing close to representing our diverse embodiments. The second limitation is more serious, and it is that people with different disabilities have different accessibility needs, and so they take to different kinds of online community platforms. For instance, many blind people still use listservs and IRC, because they're most accessible to screenreaders, whereas those with impairments that do not prevent them from using standard websites have turned to mainstream social networking platforms and virtual worlds. Until we build an online community platform that's as close to universally accessible as possible, we won't have a really suitable cross-disability platform. What we have right now are a lot of hacks that have to be carefully orchestrated. Finally, does online community translate into real world action? How do we create online support and community and mobilize it into real world community?
To start with, it's not quite the right question. Some people with disabilities can choose to be a community, but asking whether all people with disabilities are a community is something like asking whether all gay people are a community or whether all people in a particular profession are a community. The answer is, only if they choose to participate in the community – only if they join the union, or join gay organizations and go to gay oriented events. Community, if not geographically based, is complicated to define and even more complicated to recognize. There are many competing definitions of community, but the most compelling are usually based on whether people share a common set of practices. So how do we answer the rewritten question – what community can people with disabilities choose to belong to? And what are some of the practices and interests that we share?
Do people with disabilities have common practices, or political interests, that could cause them to ally? Or, should they? Disability advocates hold that we have a common interest in getting laws that protect the rights of people with disabilities passed, like the Convention on the Rights with People with Disabilities (being signed Friday by Obama), the Community Choice Act (the issue du jour on the agenda of the major cross-disability activism groups like ADAPT and People First - it's very telling and interesting that this issue has received little to no coverage in "neutral" online sources. Googling CCA or Community Choice Act reveals radical sites and a few "sunlight" sites like the ones I linked to.), and the Americans with Disabilities Act. Finally, the Americans with Disabilities Act is particularly important because it was the first legislation to legally treat people with disabilities as a class of people who have common interests (for more on this look here). In other words, whether to ourselves we have common political interests or not, we now do to the US government, and it is frequently to our advantage to form groups to further such interests in whatever communities we choose to belong to.
As for the common practices, it's a little more complicated to recognize them, and often people don't until they've been around a lot of other people with disabilities. Most of them are subtle and are related to our being in the world, and many of them are not exactly generalizable to all disabilities. For example, many of us use assistive technologies to communicate, move, or otherwise be in the world, but the exact nature of these technologies and supports is diverse and sometimes may come into conflict with each other, as we often learn at conferences when there is a constant struggle for access between the needs of interpreters and people with communication disorders. Many of us also depend on extra time and extra rest to do the things we need to do – everything takes longer for most people with disabilities. Most of us are also used to having a diverse ecology of human supports in our lives in the form of medical and social service professionals, including PCAs, doctors, therapists, rehabilitation counselors, and others.
Given all these common practices and political interests, why doesn't cross-disability community often get off the ground? I would argue that it's because of a few reasons. First of all, we're still at a point where most people with disabilities have to work, and work really hard, just to meet their individual needs. Community doesn't always form until people have the spare cycles to actually band together and do things together. That said, there are small pockets across the nation where radical people with disabilities ARE forming communities – it's just very early in the movement yet, and has yet to hit the awareness of the mainstream person with a disability. Second, there's still a strong stigma associated with disability, and many people with disabilities don't like to be seen in the company of other people with disabilities because they are trying to minimize that stigma. Third, many people with disabilities frequently face barriers to community building such as obstacles to transportation and economic challenges.
How can online communities help meet these needs? The good news is that online communities can provide a place where people with disabilities can meet with less stigma attached. In some cases they provide anonymity; in some cases they provide a place where you can be your “real” disabled self, depending on the norms of the community. Also, for people who are lucky enough to have computers and Internet and appropriate assistive technologies for accessing them – as well as an appropriate educational level - they provide a place for accessing and building community free of obstacles like transportation.
And what are the limitations of online community in building cross-disability community? One of the limitations is that we can't experience each others' bodies, so while we can't see the ways our bodies differ, we also can't experience the embodiment that we have in common that is sort of crucial to building our community. In part this can be combated by using a virtual world platform or a platform with visual avatars that encourages visual representation of disabilities, but current embodiment technologies do nothing close to representing our diverse embodiments. The second limitation is more serious, and it is that people with different disabilities have different accessibility needs, and so they take to different kinds of online community platforms. For instance, many blind people still use listservs and IRC, because they're most accessible to screenreaders, whereas those with impairments that do not prevent them from using standard websites have turned to mainstream social networking platforms and virtual worlds. Until we build an online community platform that's as close to universally accessible as possible, we won't have a really suitable cross-disability platform. What we have right now are a lot of hacks that have to be carefully orchestrated. Finally, does online community translate into real world action? How do we create online support and community and mobilize it into real world community?
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