3 Ways Disability Culture Has Been Changing
All communities and social movements change. If they don’t, they stagnate, lose relevance, and die. The process of change is almost always uncomfortable, sometimes painful, but usually valuable in the end. This is notably true for disability communities.
There are substantial differences among us. Our disabilities, social backgrounds, and degrees of underlying privilege vary a great deal, even as we are united by the common experience of disability itself. We sometimes disagree not just on strategy, but over which goals we should be working towards, or the meaning of disability itself.
But a lot of the disability community’s squabbling and disunity seems to boil down to the difficult transition between one era of our history and self-perception, and the next. The movements for disability rights and justice may seem brand new to some, including both non-disabled and disabled people learning about disability culture for the first time. But modern disability culture is old enough now that we can easily see significant shifts, from the practices, assumptions, and approaches of the 1960s and ‘70s, to those of disabled people in the second decade of the 21st Century.
If we can see some of the changes in disability culture more clearly as natural and potentially productive evolution –– rather than pernicious threats or evidence of some kind of downward trend into bad habits –– they might be easier to process and even relax about. Here are 3 broad examples of ways disability communities have been changing over the last 60 or so years, mostly for the better.
1. Higher expectations, less willingness to compromise
For a long time, disabled people accepted an initially informal and later on codified bargain. We would insist on modest efforts from individuals and society at large to improve accessibility and expand our rights and responsibilities. But we would to an extent self-regulate our demands, limiting them to those understood to be “reasonable,” in terms of difficulty, cost, and how much our accommodation needs might impose on others.
40 to 50 years ago, this bargain helped expand millions of disabled people’s freedom and opportunity. It also helped shatter the assumption that disability was simply a prison, with solid walls that could never be moved or reshaped. Today, this bargain, balancing disabled people’s rights with negotiable limitations, is still in effect. But it’s boundaries are being pushed back, and many of its underlying assumptions are no longer quite so readily accepted by disabled people.
Rights and physical freedoms that were rare and revolutionary for disabled people in 1960 –– like the right to attend a regular school, or the ability to eat at any one of a community’s restaurants –– are now seen as the bare minimum. Disabled people are increasingly asking why there is still so much responsibility put on us to prove our need for “reasonable” accommodations. Why are the procedures for asking for test accommodations in college, or for modest shifts in job duties at work, so bureaucratic, adversarial, and humiliating? Why, exactly, are the boundaries of what’s “reasonable” for disabled people to expect located where they are? Why are expectations developed in 1990 still assumed to be the outer limit of disability rights, rather than a starting foundation to build on?
There is a potential downside to these shifts. Disabled people may seem to be less patient, and more demanding than they once were. This is easily spun into harmful narratives about “entitlement.” Disabled people, especially younger disability activists, may be more likely to be portrayed as selfish, whiny, and detached from the reality of their own limitations. This stereotype never really went away anyway. But now it’s being taken up even by some other disabled people, especially those who are afraid of losing status if disabled people “go too far” in their demands.
On the other hand, such criticisms are hardly new, and are no more valid than they have ever been. Ideas about natural limitations and the dangers of expecting too much are standard arguments that have been used against every advancement of the disability rights movement for decades. They opposed even the most modest accessibility mandates, and at one time would have denied any right to individual accommodations, reasonable or not. The measured approach taken by the early disability rights movement paid off. But that means today’s disabled people can realistically and rightfully demand even better. And there are already plenty of powerful constraints in place to make life difficult for disabled people. Pushing back against them poses little risk of some imagined imbalance.
It’s necessary and a net positive for people with disabilities to revisit old bargains that worked well to establish the core principles of disability rights, but which may be increasingly out of date. It’s something to celebrate, not grouse about.
2. More honesty about hardships
Another major philosophical breakthrough that formed the basis of modern disability culture was the idea that disabled people aren’t fundamentally sick, but rather socially oppressed. This helped move disability organizations’ attention and resources away from longshot cures, towards expanding legal rights and accessibility. It also helped countless disabled individuals move on from their own sometimes obsessive and wasteful efforts at medical treatment and therapies, towards more productive and promising life goals and healthier self-acceptance.
This swing from a “medical model” to a “social model” of disability was necessary and helpful. But it was also often oversimplified. Eventually, hardened into dogma. For some us, disability could only be viewed and discussed as a social and political phenomenon. Talking about our actual conditions and admitting that sometimes being disabled is awful became almost taboo in disability culture. It was fine and even praiseworthy talk about hardships stemming from ableist oppression and injustice. But it wasn’t okay to complain about our chronic pains, fluctuating health and stamina, or bouts of depression and other mental illnesses. We had to project an uncompromising advocacy edge and a personal toughness to counter negative traditional stereotypes of disabled people as fundamentally sick and fragile.
Thankfully, this imperative is softening.
The medical and social models of disability are still useful, and debated with some intensity among disabled people. And many disability subgroups, especially chronically ill and mentally ill people, still struggle to find a place in the broader disability community because of its reluctance to discuss any form of illness or perceived “weakness.” But it is becoming far more common and accepted now for people with disabilities to share our personal hardships –– to admit publicly that we are “not okay.”
The risk is that this may be part of a swing back to the medical model, which could undermine our disability rights and social justice agendas. It is still a dilemma each of us must face every day. How do I present myself as capable and ready to run with hard-won opportunities, while also highlighting everyday problems I need help with, maybe desperately? It’s a hard habit to break. We learned decades ago to display our relentless positivity and work tirelessly for disability rights and justice, even as our bodies and minds might have been quietly falling apart. To some disabled people who came of age in those formative years of empowerment, admitting anything like “weakness” continues to be frightening, and may even be seen as harmful to the community itself.
But clearly, what we are seeing is a long overdue and healthy correction. Disability is both a medical and a social experience. And disabled people can be collectively worthy of rights, access, and opportunities, while having a wide variety of individual needs and yes, weaknesses and illnesses. We fight, win, achieve, and suffer. And it’s good that more of us feel able to talk about all of it.
3. More recognition of the disability community’s breadth, diversity and intersectionality
At one time, and to some extent still today, it seemed like a good idea to portray disability issues as fairly simple, even “easier” to deal with than other social justice issues. It might be hard to actually get some things done. Money was always a barrier and getting attention for disability issues was always hard. But none of the substance of disability rights seemed particularly complicated, or ideologically controversial.
This wasn’t just a perception imposed from the outside. The disability community deliberately portrayed itself as different, yes, but easy to know, held back mostly by minor misunderstanding and barriers easily fixed with comfortingly mechanical means. Most of what we needed could be accomplished ramps, awareness seminars, and laws eliminating the most obvious discriminatory practices. Or so we told ourselves.
Meanwhile, the most reassuringly “normal” and “relatable” people were put forward to represent the disability community. This usually meant white men and women in wheelchairs between 20 and 60 years old, and other disabled people with comfortable incomes, good educations, and solid white-collar career achievements. Black disabled people, other disabled people of color, LGBTQ+ disabled people, disabled immigrants, and disabled people in institutions, unemployed, with low or no incomes were all doing work in the movement, but were both passively and actively shunted aside.
Ableism itself has also been a persistent and corrosive habit throughout the disability community. Few disabled people approve of it, exactly. But there is an undeniable hierarchy in which people with certain physical disabilities are considered better, more capable, and more worthy of the full range of rights than, say, people with intellectual disabilities or those with mental health conditions.
These internal prejudices within the disability community are also changing –– slowly, but noticeably. For one thing, variations on the concept of “intersectionality” are being increasingly adapted and applied in the disability community and disability work. Ableism is no longer so easily characterized as entirely separate from racism, sexism, homophobia, and other forms of oppression. At the same time, much more of the disability community now strives not just for a minimalist “disability rights,” but for a more complex, interwoven, and in many ways more meaningful “disability justice.” In a recent Atlantic article on the experiences of Black disabled people, Shalene Gupta explains:
“Whereas previous disability activism focused on gaining rights, disability justice takes into account how identity—race, ethnicity, gender, class, and sexual orientation—affects a disabled person’s experience, and how ableism intertwines with other systems of oppression.”
Recent events like Black Live Matter, #MeToo, and the COVID-19 pandemic have begun to force disabled people and disability organizations to rethink the scope of what constitutes “disability issues,” think more critically our own prejudices, and apply the principles of inclusion internally with each other as we have always strived to with non-disabled people and institutions.
There may not be any real downside to this development, unless discomfort and occasional arguments within a community are bad by definition. Some disabled people are uncomfortable with discussing racial justice, or any other form of social justice other than a very narrowly defined disability rights. And disabled people are not at all immune from racism or other prejudices. So these discussions and evolutions probably do give an impression of more disunity among disabled people.
But what we are really seeing are growing pains. The broader, more inclusive definitions of disability, and recognition of the disability community’s profound diversity and inequality are just barely starting. Progress is inadequate so far. But it is real. There are models and leaders to follow. And it’s becoming less common or even possible for disability community leaders and organizations to limit the scope of their concern and audiences to just the most familiar and comfortable issues and goals.
This expansion of scope and more self-critical practice in disability communities is better than what was considered standard before. It’s better for disabled people who have been poorly served and represented because they don’t fit a narrow, palatable, magazine cover image of disability. It’s better for disability movements overall because it forces them to live up to their stated principles.
All of these changes spark conflict. Some of it is productive; much of it is wasteful and unnecessary. It’s tempting for older members of any movement to indulge in head-shaking disapproval of “kids these days,” and worry about the next generation’s supposed weaknesses and failures.
But for the most part, the changes underway in disability culture seem to be for the better. Broadly speaking, disabled people today are more confident and self-assured, more realistic and conscious of barriers all of us face, and more willing to think and act as a mutually supporting community. Only time will tell just how positive these changes are, and whether some turn out to be mistakes. That’s the way it is, and the way it always has been for any movement or community. So we might as well relax about it.