A group of six disabled POC folks gather on a rooftop to chat.
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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, despite the Americans with Disabilities Act(ADA) being over 30 years old.

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 thembut so many groups just don’t think about us at all.

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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 shortmore of an afterthought than anything else.

I have the sense that this is a pretty typical treatment of the subject.

I recently read How to Be an Anti-Racist by Ibrim X. Kendi. 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.

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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 their 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 any space without ramps and elevators rather than the problem being the person needing to use a wheelchair.

The medical model explains exclusionthe social model demands inclusion.

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Watching ableism in the media with COVID-19

There have been fewer times in recent history 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 diseaseand 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.

While this image could be interpreted as selfishness and fearful behavior by the general populace, many people with disabilities actually needed to hide and horde in order to not die from COVID-19.

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.

*Update* – Long Covid appears to be hitting about 25% of people who were infected with Covid-19, and while progress is being made on understanding Long Covid’s triggers, there is still a long way to go.

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?

*Update* – The CDC’s decision to shift their focus from infection rate to hospitalization rate is extremely damaging and minimizing to the disabled community, as is the early ending of mask mandates on public transportation and the general dismissal of mask mandates.

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What does accessibility really mean?

Accessibility is 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 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, and ASL or visual cues for Deaf folx.

Ideally, it should also include support for people with invisible illnesses and neurodivergent folx as well.

For example, larger grips on doors, little effort required for opening or closing things, decent support and cushioning in seats, scent-free or low-scent spaces, ingredients lists for food (for those with 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 prioritiesbut my point is that disabilities impact people in many different ways and to different degrees.

Being aware of the possibilities is really importantas 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. The phrase “Nothing about us without us” has been adopted by the international disability community for precisely this reason.

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Universal design

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 on 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 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.

Making spaces accessible and beautiful isn’t hard, and we all deserve to be able to enjoy the beauty of the world around us.

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), we as a society deserve better.

How do we make it better?

Focus on the outliers. Instead of just thinking about the average abled 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 mindand everybody will benefit!

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Making our world more accessible

The ADA and similar laws are a good first stepthey 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 ignoredand 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 in the same place that everybody else is.

What would be extremely helpful would be if abled 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 itcomplaining 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.

Instead of focusing on what we don’t have, let’s just make allowances for differences in mobility and information processing!

If you are sharing posts 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 neurotypicalshare 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, and 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.

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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 being 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 are 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. 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.

I am all about raising up others in need, but it’s important to think about the needs of participants in the process!

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.

*Update* – there no longer is a deaf contingent. The Poor People’s Campaign removed it after deciding to only focus on geographic boundaries.

I’m not an expert on all accommodations needed, but at least I’m willing and able to acknowledge that. I want to hear from other disabled folks inside of the communityto 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 benefitsit’s all the outliers in society.

Creating more accessible spaces and events makes it easier for children and elders, as well as many others.

All of society will benefit because now we’re all in a better space to understand one another.

I won’t stop pushing for thisand I hope you don’t either!

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  1. Reading this made me think of the simple issue of getting around in London, which is really difficult for wheelchair users and others with mobility issues. While much is being done, it still isn’t enough. If travel is challenging, to say the least, it shows that so many other areas of life are incredibly difficult.

    1. It absolutely does! Here in the US laws were passed to protect disabled folks, but it took a long time for them to be enforced. The ADA helps and is a true civil rights document for disabled people, but we have to complain about our rights being violated for anything to happen. Then, you know, somebody with power has to listen and so on. I think what would change things the most would be if average citizens recognized the needs of our community and helped make sure they were met. That’s going to take a lot of work!

  2. I’m in a city that still needs to get its pavements cleared up and ramps in order! But I do really believe that the conversation is changing and I hope that translates to something.

    What does surprise me though is in the developed nations when listed buildings don’t fall under the need to change even their basic accessibility – how parking spaces during Covid times are being taken away by cafés… it suddenly feels like we’re taking 10 steps back!

    This was so written and explained – I’ll be forwarding to this to whoever I know.

    1. Shruti,
      We still have issues on those fronts here, too! Like many other minority identities, cities are doing a somewhat better job than rural areas, and some spaces are still ‘grandfathered’ out of compliance. I am hoping that our international disabled community will be able to push our slower neighbors forward as we become better recognized. It’s all a tough fight right now though…the US is still questioning racism, despite the well-documented history. Ableism is much lower priority in many ways. I’m hoping we can keep the ‘equality’ framing and speed up the rate of acceptance/understanding

    1. It’s interesting, I think there are ways that COVID-19 has increased some forms of accessibility (like most events being online, working from home, and increased flexibility in many areas), but I understand that actually going out is more dangerous for us, and that there are other ways that we are at a disadvantage. Life during covid has been very different from life before covid, and I doubt this is the end of those challenges

  3. I truly love this post. We are excluded from so many conversations… or like a blurb. And I like the focus on universal design. I know it isn’t a focus here. In a new office I went to before I became fully disabled they couldn’t do office accommodation because of the way the offices were designed… you couldn’t do ergonomically correct keyboard for example.

    And the Old office, the bathroom was Downstairs… so that isn’t accessible in the least. I actually had a disagreement with them recently when they took their senior/disabled wicket (where you can sit down) and decided to close it and use it to display pamphlets. Well my vertigo is wicked and standing in line can make me begin to wobble and get dizzier and dizzier but I was also thinking of all the people that Need that Wicket. So I complained officially so they had to change it. Had to. Didn’t Want to.

    1. Nikki – good for you for standing up for us as a community! We need to understand things well enough to push for inclusion wherever we are – so recognizing our own needs and the potential needs of others is a huge part of this. I’m so sorry you’re struggling, but so many of us are! I’m all about us making sure that we have a seat at the table – so that all of us can participate in the things we want to!

  4. Amazing post. I am quite new to feeling strongly about ableism as although I’m in a wheelchair when I do go out, I’m mostly bed-bound,. My experience has been particularly difficult as a mum of Teenage boys in a school with stairs and locked lifts and people once trying to carry me up 5 steps in my chair (no thank you), as well as the more familiar problems we have when in a wheelchair. I can only empathise with the trauma of being so incredibly misunderstood by other’s inability to try and understand you but I think you’re doing an amazing job at speaking up!

    1. Thank you so much Laura! Yeah, that offer to carry you places is so very misplaced. There’s a lot to be done to get equal treatment. I hope you are able to get out and about a bit more- and that you have minimal experiences of ableism on your way!

  5. I just watched this tonight. I didn’t know the 504 sit-in and the fight to get the law passed. This has good info, albeit funny (Drunk History is my new distraction that gets me laughing.).

    1. You watched Crip Camp? https://cripcamp.com/ It’s excellent – I highly recommend it! It gives great insights into our community and its history, while being quite entertaining. As mentioned in the movie, their trailblazing work underpins much of the modern disability rights movement. Because they fought to ensure that disabled folks could get a full education, could actively participate in society, had rights and should be able to use public transit, vote, and have children, each new generation of disabled folks are taking it all another step further!

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