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It’s not easy to get a handle on what “The Disability Community” thinks.
In July of last year, Rutgers University professors Lisa Schur and Douglas Kruse published a report on disabled people’s voting trends in the 2018 elections, which was a followup on a major report they issued on how disabled Americans voted in 2016.
A background goal of these reports, one that disability activist groups are particularly interested in, is to try to identify what a “disability voting bloc” might look like and how it might shape not just disability policy, but actual elections. As we enter another big election year, with signs of more voting and political activity by disabled people, is it yet possible for candidates to harness a “disability vote?” Kruse and Schur’s data suggest that disabled Americans are nearly as diverse and politically polarized as the population at large. Disability itself is a widely diverse set of experiences, and disabled people’s views on disability issues fall into several very different patterns.
And it’s not just a puzzle for politicians. How can companies, community organizations, and individuals really know how to treat disabled people in everyday life properly when the disability community itself contains so many different perspectives and opinions? How do disabled people explain ourselves and what “we” want, when we so rarely agree with each other?
People with different kinds of disabilities do share significant problems and experiences in common, as well as certain basic priorities, such as physical mobility, the right to make our own decisions, and the struggle for both financial stability and social respect. But then why are there such enormous differences by nearly every measure among the approximately 61 million people with disabilities in the United States?
The disability community’s diversity can be confusing, but it’s not incomprehensible. We just need to dig a bit deeper to understand some of the most important differences in experience and thinking among people with disabilities, Here are four worth exploring ...
1. Types of disability
The most obvious differences are between different types of disability. We can think of them in terms of broad categories, like physical, cognitive, sensory, mental health, and learning disabilities. Or we can focus on specific diagnoses, like spinal cord injury, Cerebral Palsy, and chronic pain ... Down Syndrome and traumatic brain injury ... blindness and deafness of varying degrees ... depression, anxiety, and schizophrenia, or dyslexia, ADHD, and autism. Each comes with its own constellation of accompanying strengths and impairments.
Each category and specifc type of disability also comes with different ableist stereotypes and intensities of discrimination. Physically disabled people are often seen as either lazy or excessively brave. People with intellectual disabilities tend to be either ridiculed or sentimentalized. People with mental illness are feared. Autism is still widely viewed as an “epidemic” and a tragedy for families. And these stereotypes aren’t only imposed by non-disabled people; disabled people do it to each other, too. We often speak with concern and disapproval about a “hierarchy of disability” and “oppression olympics” — the habit of people with one kind of disability trying to boost their own legitimacy by disassociating themselves from people with other kinds of impairments, or claiming some kind of higher status or greater degree of stigma and hardship. The most common example is people with physical disabilities minimizing the importance of being in a wheelchair by saying, “At least there’s nothing wrong with my mind!” as if having a cognitive disability was somehow less acceptable.
The specific types of disabilities we have powerfully shape how we understand and respond to disability, how we view our place in society, and how we relate to our fellow disabled people. While we all share much in common, the real and perceived differences in perspective and experience can’t be wished away.
2. Personal histories
Another important difference among disabled people is how long each has actually had their disabilities, how they became disabled, and how their thinking about disability has evolved. Some of us are born with our disabilities, or have had them from early childhood. Others acquire our disabilities later in life, from illness, accident, or aging.
Unlike almost any other “minority” culture, disabled people are both born and made. Each experience brings with it a different sense of loss and identity, shame and pride, pessimism and hope. It’s also significant that most disabled people are introduced to the disability experience itself by people who are not themselves disabled. Most of us first learn about what disability means from our parents, doctors, therapists, and teachers, our non-disabled neighbors, and popular culture. Eventually, we may meet other disabled people who can give us the “inside scoop” on what disability is really all about, both the bad and the good. But many of us wait years for this kind of peer support, and too many never really find it.
Finally, while every disabled person’s history is different, there are familiar patterns. Some of us start with strong and empowering support and a sense of great optimism, and later discover both systemic and personal ableism. Others experience shocking mismanagement and oppression from those closest to us early in life, and hopefully develop some kind of disability pride and ambition later on. Some view their own disabilities as an inherent deficiency that can at best be tolerated or shoved aside. Others come to see their disabilities as valued parts of their basic identity. Some find strength in community, others in staunch self-reliance and individuality. These different disability journeys profoundly affect how disabled people understand virtually every situation they encounter throughout their lives.
3. Overlapping identities and experiences
Disabled people’s race, ethnicity, gender, sexuality, economic and social class, education, and religion and fundamental values also affect how we experience and process our disabilities. Despite wrangling and definition-slicing over “intersectionality,” “appropriation,” and “privilege,” it’s actually pretty obvious that disability overlaps with other social identities and experiences, and that disabled people who are also, for instance, Black, LGBTQ+, or poor, experience multiple layers of stigma and discrimination that others may not.
Unity, equality, and unconditional acceptance are not easily found even from fellow disabled people. The disability community has a long habit of seeking to connect with other civil rights movements for inspiration and strategies, while cordoning itself off from them in hopes of avoiding “controversy.” While all people with disabilities have equal value, and deserve equal access and opportunity, it only makes sense to acknowledge that for many of us, disability is only one of many layers of identity and experience, and that some of us have to deal with more barriers than others because of it.
4. Paradigms and disciplines
On top of all these practical and personal differences, each disabled person’s understanding of disability is shaped by their fundamental philosophy of disability, and drawn to one or more of a wide variety of disability-related topics areas, modes of thinking, and activity.
The most commonly-cited difference in disability thinking is between the “Medical” and “Social” models of disability. Roughly speaking, the Medical Model focuses on disability as a medical experience, a set of impairments to be treated, with the goal being something as close as possible to “normal” functioning. The Social Model views disability as primarily a matter of combating discrimination, ensuring equal access, and making sure disabled people have practiacal supports to sustain independence and live lives on their own terms. In general, the Medical Model places responsibility for improvement on the disabled individual and their personal efforts, while the Social Model emphasizes collective action and social responsibility to make society better and more accepting of disabled people, both individually and as a group.
One noticeable way this plays out is in the many differences between disability organizations. Some focus on raising money for cures and treatments, or on individual education, self-improvement, and motivation. Others emphasize advocacy, activism, and building a greater sense of community and pride among people with disabilities. Disabled people themselves, when they think about their disabilities at all, usually gravitate fairly strongly towards a self-help and normalizing approach, or a collaborative, activist approach to disability. The Medical Model is older and generally viewed as more traditional, while the Social Model is relatively new, arising gradually from around the mid-20th Century.
Most disabled people and disability organizations fall somewhere on a spectrum between the two “disability paradigms,” and both approaches are useful for somewhat different purposes. However, the Medical and Social Models of disability do seem to reflect real, natural differences in how people’s understandings of disability tend to lean in one direction or the other.
These two broad paradigms can be further refined through different disciplines. In effect, disabled people who are active in some ways in the field of disability tend to gravitate towards specific approaches that look a lot like university majors. For example:
Medicine and biology: Focus on disabling conditions themselves, how they affect the body, and how they may be alleviated or eliminated. Will a spinal cord injured person walk again someday? Can we prevent certain disabilities from occurring? Can degenerative diseases be stopped or reversed?
Psychology and sociology: How individual disabled people process their disability experience, and how society understands and treats disabled people. How does a disabled person develop greater self-esteem and deal with disability-related trauma? How does ableism affect social structures and cultural habits? How can we combat ableism and develop positive beliefs about disability?
Law and political science: Focus on securing the rights and supports people with disabilities need, in the most reliable and efficient ways possible. Does a disabled person have a shot at a job, or will they experience discrimination? What is the best way to make sure disabled people can live independently and avoid institutionalization? Can disabled people themselves play a role in developing good disability laws and policies?
Engineering: Design techniques and technologies to make disabled people’s homes, workplaces, and communities more accessible. What’s the best way to design buildings and transportation systems for universal accessibility? How can we use computer technologies to help disabled people be more self-sufficient? What innovations really benefit disabled people, and which are just cool-looking gadgets?
Literature, drama, and humanities: Focus on disability culture. How do disabled people express themselves and share their stories? How do we counteract ableist stereotypes in popular culture? How do we ensure that disabled artists and performers have the opportunity to be heard and earn a living?
Collectively, these varied disciplines cover the full range of disability experiences, needs, and concerns. Unfortunately, they can also become competing, even warring camps. People who mainly pursue medical approaches to disability may be regarded as regressive by people who prefer a Social Model approach. People who pursue a psychological or self-help approach are sometimes seen as allied to the Medical Model, or as naive and judgemental. Disability activists are valued for their legal and policy achievements, but are at times viewed as suspect because of their presumed political and ideological ties. And a good portion of disabled people are mystified by what disability arts and culture might even mean, because they haven’t had much exposure to it.
These ways of understanding the disability community are not definitive. They simply suggest some of the main fissures, contrasts, and different tastes that exist among people with disabilities. And through it all, in spite of all divisions, there is still a strong pull towards greater unity, and a lot of ground for common understanding.
