The first thing that I want to make very clear is that I *want* the public to do a better job of making things accessible.
I know that even getting ramps, captions, image descriptions, and other basic essentials meant to allow people with physical disabilities to participate in society still has a long way to go. Most wheelchair users have, on more than one occasion, been prevented from participating in things due to the venue being inaccessible.
I absolutely want these issues corrected. That is a basic and necessary step for disabled people to be included in society.
However, the disabled community is large and our needs are varied. Being included can be a challenging process, and ableism is a deeply rooted issue that underlies most interactions in our society.
Most people aren’t aware that they are ableist, because they haven’t thought about it or examined their thoughts and feelings about disabled people.
They need to be educated so they can understand how to be a good ally. And we can educate them—but so many groups just don’t think about us at all.
Being minimized by diversity experts
I was talking with a friend of mine from BiRequest as I was deciding to leave the group.
We’d gotten into a far-ranging discussion about disability and ableism and what fair treatment for disabled people would really look like.
He remarked that when he’d participated in a diversity training at his job, disabled people had gotten short shrift. There’d been a deep discussion on racism, conversation and resources shared about sexism (which had been a focus of the conversation), but then when it came to disabilities, there just really wasn’t much said. There wasn’t much of anything by way of materials and the conversation was short—more of an afterthought than anything else.
I recently read How to Be an Anti-Racist. It gave me a lot to process. It was a thorough, engaging book, following the author’s own journey into understanding racism, and he wrote eloquently about the lessons he learned, and I was proud to see many of my intersectional identities discussed.
I read about sexism and about the LGBT community from the antiracist perspective—“I can’t wait to read the disability section,” I thought. Then the book ended. No mention of how to be an antiracist within the disabled community. I was very disappointed because I wanted to be able to wholeheartedly recommend it. But to have the disabled identity ignored hurt me, and made me more aware of the ableism within the Black community.
Understanding the social model of disability
Most people operate under the medical model of disability. According to this model, a disabled person is a patient, somebody “broken” who is going to the doctor for help in getting closer to “normal” so that they can be healed. While that image is somewhat reasonable for a patient when seeing a doctor, the disabled community is a lot more than this and has a lot to offer society as a whole.
The social model of disability is where accessibility comes in. It flips the model and shifts the focus from what a disabled person can’t do to a focus on what adjustments society can and should (moral obligation) do in order for disabled people to continue to participate in society to the best of our ability. What does this mean? How can society adjust or change or adapt so that disabled people can fully participate?
As an example, using the medical model of disability, a paraplegic can’t climb stairs or walk. The social model of disability acknowledges that this person may need to use a wheelchair to get around, but focuses on how the wheelchair user therefore needs ramps and elevators as options in addition to the stairs that are already available.
The focus shifts to inclusion and to the source of the problem being the inaccessibility of a space without ramps and elevators rather than the problem being the person needing to use a wheelchair.
The medical model explains exclusion—the social model demands inclusion.
Watching ableism in the media with COVID-19
There have been fewer times where the disabled community has been so severely pummeled with ableism than during the COVID-19 epidemic.
Throughout COVID-19, I’ve watched the disabled community be dismissed by the media. “It’s only deadly if you have co-morbidities.” “it’s most dangerous for people with compromised immune systems.” The push to reopen before the pandemic has passed has been deadly, but the community most likely to be killed by this is the disabled community.
As COVID-19 raged through assisted living and retirement facilities, some attention was paid to the grandparents killed by the disease—and the deaths among staff at these facilities. But the other population there are people with severe disabilities, who can’t afford to leave.
Living out in the greater community doesn’t protect us either. Disabled folks who need an aide have been struggling to get that support without dramatically increasing their risk of catching COVID-19. With so many people denying the existence of the virus or insisting that the concerns are overstated, it has spread throughout many areas and too many disabled people live with people who aren’t taking the pandemic seriously.
We as a community have not been recognized as one of the populations most likely to be killed by COVID-19, and our deaths are not consistently measured or counted.
Also, the media has only focused on infection and death rates with COVID-19. Many people survive the virus but remain severely impacted by it, possibly permanently. I anticipate a new set of disabled people coming into existence: COVID-19 survivors. This also isn’t receiving much, if any, media attention.
I’m tired of being dismissed and written off. I don’t want to be a statistic; I am a person. But when my community is dying and being abused and at such high risk, could we please at least be recognized as a community?
What does accessibility really mean?
Accessibility is about the degree to which a person with a disabling condition is able to use or participate in an object, activity, or event. Accessibility tools can be used to make this participation easier.
For a space to be accessible, people with any type of physical disability need to be able to utilize it. This is why there are ramps, lifts, or elevators for wheelchair users, braille or vocal cues for blind people, ASL or visual cues for Deaf folx. Ideally, it should also include supports for people with invisible illnesses and neurodivergent folx as well. For example, larger grips on doors, little effort required for opening or closing, decent support and cushioning in seats, scent-free or low-scent spaces, ingredients lists for food (allergies and food sensitivities), and multiple options for how to access information would be helpful and are sometimes made available.
Every situation will have slightly different requirements, and differing priorities—but my point is that disabilities impact people in many different ways and to different degrees, so being aware of the possibilities is really important—as is a willingness to actively offer accommodations and check in on people’s needs, rather than assuming that everybody at an event has the same needs.
To truly create accessible spaces, disabled people need to be part of the conversation around design and planning.
A relatively new concept in the design world is Universal design theory. Developed in 1997, it focuses on creating spaces and items that are designed to be intuitive and easy to use, while being fully accessible, regardless of age or disability. Universal design principles are a major step toward full accessibility because it centers disabled people in their process.
Universal design was initially integrated into architecture, but at this point it’s become a conceptual framework that is useful for any form of design project. The goal is to balance simplicity and versatility in such a way that almost anyone can participate or utilize the object or space.
As an example, planning a garden or park space to have gently sloping terrain or a ramp entrance instead of stairs allows wheelchairs, baby carriages, walkers, and bicyclists to enter at that location.
Universal design elements are also behind many kitchen tools that make life easier, such as clear measuring cups, many of the tools that help you prepare food more easily in the microwave, can openers that require minimal grips, and many more everyday items.
Here are some examples of universal design to help you better visualize the many ways universal design can be applied.
Universal design is the alternative for designing for the “average” person. Stairs, park benches, and sidewalks are designed for the average person. This focus does meet the needs of many people, but as it leaves out large swaths of the population (beyond disabled people, it also tends to leave out the elderly, children, and sometimes women), and we as a society deserve better.
How do we make it better? Focus on the outliers. Instead of just thinking about the average able-bodied man, think about the diversity of individuals who may also visit, use, or need this particular location or facility. Build with wheelchairs in mind. Build with short stature in mind. Build with weakness and fatigue and simplicity in mind—and everybody will benefit!
Making our world more accessible
The ADA and similar laws are a good first step—they give people with disabilities a space to complain and a chance to be heard when things aren’t accessible and when problems arise.
But the entire system requires that people complain about the poor service or about being ignored—and that’s extra energy that many folks with disabilities don’t have.
Also, it’s very simply exhausting to have to push back every step of the way, and to have to keep fighting just to be the same place that everybody else is.
What would be extremely helpful would be if non-disabled people could actively anticipate at least some of the needs disabled people might have.
I’m still working on this myself.
Captions and ramps are part of it—complaining if something isn’t accessible, suggesting that spaces be designed to be accessible instead of it being an afterthought.
But also, simply being ready to ask if people need accommodations. Or being willing to mention accessibility details in your announcements.
If you are sharing on social media, share an image description so that blind folks can be in on the joke too. If you share a video, make sure it has captions (or write them yourself), so that Deaf folks know what’s going on.
Recognize that not everybody is neurotypical—share trigger warnings if appropriate. If you plan an event, be precise about what you plan to do and where you plan on being so that disabled folx can make a reasonable evaluation of if they can safely participate.
If you own a business, make sure you understand the definition of “accessible.” One step can be an insurmountable barrier for some, a minor inconvenience for others. The better you describe the potential barrier, the better able the individual disabled person is to make a knowledgeable decision on whether or not they can safely participate.
Train yourself and your friends to think about disabilities, both visible and invisible. Be aware that others can become fatigued, may need a chair sooner than you, or may occasionally need to cancel plans at the last minute due to an unreliable anything.
Being more patient, more aware, and a better listener will put you in good stead to support other disabled folks in your community, and be more inclusive to disabled people overall.
Giving folks the benefit of the doubt is a huge way to combat ableism.
Why I’m writing about this today
I have personally had strangers assume that I’m mentally incompetent because I was rocking back and forth, having a seizure when I told them I wasn’t, and been referred to as a fire hazard and a distraction while working by my peers.
I’ve had trained medical professionals try to restrain me, and others be too frightened to touch me. I’ve been accused of performing a sex-act during a wedding, “making a scene” when I got symptomatic, and have been asked many times to sit in the back or corner of a space so I won’t be distracting.
Most of these incidents were due to other people jumping to conclusions. The exceptions were out of a fear of others jumping to conclusions. And I know that my experiences are relatively mild compared to others with more visible or more extreme disabilities!
I also was pushed out of BiRequest due to one member’s ableism and the group’s reluctance to hold him responsible.
Now, I’ve joined the Poor People’s Campaign, and while they strive to be an inclusive group and lift up all poor and low-wealth people, they too have unintentionally carried on ableist ideas.
Watching a fellow disabled person own their own processing issues and having their request misinterpreted as an inability to find the ASL interpreter was painful for me. Having my own request for statistics on the disabled population be ignored wasn’t comforting either.
I’m trying to help fix that.
I think it’s great that they have brought in the Deaf community. However, including them doesn’t mean that they have great disability representation. Deaf folks are one part of the disabled community and meeting the needs of the Deaf community, while a good step, doesn’t mean that all other disabilities will be acknowledged or accommodated.
I’m not an expert on all accommodations needed, but at least I’m wiling and able to acknowledge that. I want to hear from other disabled folks inside of the community—to make sure that all voices are actually heard, and that we are included.
There is a long history of disabled people being excluded from activism (as well as society in general) and I want to do my part to break down that silo and help us be front and center in the movements we believe in.
I also believe that by doing that, it’s not only the disabled community that benefits—it’s all the outliers in society. Creating more accessible spaces and events makes it easier for children and elders, and slow-learners and people with short attention spans. All of society will benefit because now we’re all in a better space to understand one another.
I won’t stop pushing for this—and I hope you don’t either!