Disability Culture
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Disability culture is big, diverse and exciting – but it can be hard to get a grasp on.
Upbeat, optimistic news articles and Facebook posts about disability life are not necessarily helpful or even ethical for actual disabled people, and angry, combative protests and Twitter threads are exactly what’s needed in certain situations. Disability discourse consists of concrete, substantive ideas and issues that can be rationally communicated, interpreted, and evaluated. But knowing the content of ableist culture isn’t always enough to accurately understand what you’re seeing.
Recent trends in buzzwords may help. Perhaps we should look for something like a “disability vibe.” Even if we don’t take the buzzword too seriously or literally, the idea that different disability communities and perspectives each have their own distinctive “vibe” may help both observers and participants to better understand the complexities of disability culture.
Here are some of the most common and distinctive “vibes” of disability culture…
Medical Vibe
For some in the disability community and for some people with disabilities, living with a disability means primarily pursuing and believing in medical prevention and treatment as the answer to their disability problems. This includes spinal cord injury patients who invest heavily in medical and technological advances in the hope that they will one day be able to walk again. For others, it means engaging in rigorous physical therapy in the hope of some other significant or marginal improvement in their specific disability.
These “medical vibes” also contain messages and beliefs about self-help and recovery concepts and treatments, where the emphasis is on overcoming the physical, mental and emotional impacts of disability. There is a primary focus on individual self-improvement, with less emphasis on the physical, social and policy barriers that affect the broader disability community.
While the specific beliefs, actions, and goals vary, the “medical vibe” tells us that our disabilities can be overcome and that, perhaps, if we try hard enough, they will be cured and go away. However, these medical vibes can also convey less encouraging messages, such as that disabled people are sick and broken, or that the reason they’re not getting better yet is because they haven’t tried hard enough.
Charity Vibes
The “charity atmosphere” is hard to miss. For many people, especially able-bodied people with few connections to the actual disability community, ableism is essentially a charity culture, if it even exists at all. For a long time, both literal charities and the atmosphere they exploit and generate have dominated ableism, and to some extent still do.
Details vary, but broadly speaking, the “charity vibe” grew out of deliberate strategies and unconscious habits of using sympathy for people with disabilities as a call to action. Early and influential examples include the original “March of Dimes” for a polio cure and the old-fashioned “Jerry Lewis Labor Day Telethon” for muscular dystrophy. Both were very successful, at least by some standards, and could be said to have generated general goodwill toward people with disabilities. But for many people with disabilities, the cost of exploitation, condescension, and humiliation was always too high; and today it’s just embarrassing. The “charity vibe” still exists and is still used, but it’s now viewed much more critically.
On the other hand, there is a fine line between disabled people honestly sharing their experiences of hardship seeking help and being exploited by able-bodied people as part of a coordinated and possibly profitable media campaign. Disabled people sometimes use at least some of the “charity air” in their advocacy campaigns, such as when drawing attention to poverty and the lack of needed services. Disabled people are also increasingly using online fundraising services such as GoFundMe, which feels more sincere and less exploitative because disabled people themselves decide how to shape the donations. But it still sells a similar “charity air,” whether justified or not.
Either way, the “atmosphere of charity” tells us that disabled people’s lives are really tough, disadvantaged, and often sad, and asks for our help. Unfortunately, there also tends to be an atmosphere of disgust or pity there, suggesting that disability is a tragedy and that we should be grateful that other people don’t have to have one.
Sense of accomplishment
Another powerful way of looking at the lives of people with disabilities is to focus on the achievements of individuals with disabilities in work, financial independence, academics, arts and creativity, entrepreneurship, sports, and other measures of success. Much of the popular discourse about disability celebrates people with disabilities who, despite their disabilities, have good jobs, happy families, live in nice homes, and present a reassuring image of normalcy and professional sophistication.
This is so common and so unique that it could even be called a “sense of achievement” – that traditional middle-class success is seen as the strongest assertion of equality and worth for disabled people, with the implicit message that all disabled people should be able to achieve at least this much – and that if disabled people can do really incredible things, like winning Olympic medals or performance awards, then surely other disabled people can at least achieve more modest everyday goals.
Of course, there are lighter versions of “achievement” where disabled people simply celebrate their own achievements without any grand message or ideology implied. This could include disabled people sharing their big, small, and intermediate successes with friends and family on Facebook, or disability activists celebrating advocacy victories on Twitter, or simply celebrating a well-earned holiday.
“Achievement” seems to reassure us that disabled life is rewarding and that there are plenty of good role models to emulate in the disability community. At the same time, “Achievement” can also feel more like a punishment, suggesting that disabled people who aren’t working, successful, or happy must not have the right attitude. And because popular images of mainstream middle- and upper-middle-class success are still predominantly white, male, and heterosexual, disabled people of other races, genders, and social classes are often left out of these stories of disability achievement and acceptance.
Advocacy Vibes
This is perhaps the most intense and contentious of the various “atmospheres” of disability culture. The “advocacy atmosphere” involves two main kinds of effort, often running in parallel but sometimes overlapping.
Advocacy – The activities of individuals with disabilities fighting for their specific needs and rights, primarily on a small, local scale. Examples include a quadriplegic person seeking in-home care to live independently, a paraplegic person campaigning for accessibility at a local restaurant, or a parent fighting for educational support for their child with a learning disability.
Activism – larger, longer-term state and national advocacy efforts by people with disabilities to fight for better laws, policies, and big changes that will improve the lives of the entire disability community. This can include public protests and behind-the-scenes persuasion for things like increased funding to reduce home care waiting lists, defending the Americans with Disabilities Act against efforts to weaken it, and calling for more aggressive enforcement of special education laws and regulations.
The “advocacy atmosphere” also includes journalism and other content (especially produced by disabled people themselves) in both mainstream and social media that exposes and explains the issues and unresolved inequities of disabled life — what is not right, uplifting, or inspiring in the disability world. It includes the growing number of disabled journalists who work freelance or on staff for newspapers, magazines, and television news networks; and it includes disabled authors and public, independent disability commentators, all of whom promote critical ideas and debates about disability through their books and everyday social media.
The “advocacy climate” asserts that not all is well for disabled people, but that disabled people are working on it. At its best, it inspires people to join the fight. And it is based on the idea that for the disability community to move forward toward a better future, we must first acknowledge the worst that is happening to disabled people, both as individuals and as a community. Of course, this emphasis on harm and injustice can undermine positive advocacy. The “advocacy climate” in disabled culture leads to the conclusion that “everyone hates us, all systems are rigged, and progress is never real or lasting.”
Disability culture cannot be described simply by using the vague and semi-serious notion of “vibe.” Disability culture is actually to a large extent a collection of feelings and responses, some consistent and some contradictory, constantly shifting and overlapping, but all very real.