Hoo boy have I been working hard on this post! While I don’t love my illnesses, I absolutely love the disability community and being a part of it. Since I am a vocal advocate for disability rights, I thought it was a good idea to help any of you who want to be an advocate or be a better one but don’t know where to start. We’re going to talk about what the disability rights movement is, as well as 9 ways that you can advocate for disabled people and our rights.
I do not speak for all disabled people, as that is a huge community. Plenty of other disabled people will disagree with me and my tips! I do not claim to be an authority on all disabled people’s experiences or opinions.
What Is the Disability Rights Movement?
As you can probably tell from the name, this is a movement to improve disability rights, or the rights of disabled people. If you’re American, you might be familiar with the Americans with Disabilities Act, or ADA. Getting the ADA passed was a big project of the American disability rights movement, as it “prohibits discrimination of people with disabilities in many aspects of public life” (x).
But that’s one law. The movement is a lot bigger than “just” the ADA!
Many disability activists work with other marginalized groups, especially as disability intersects with other communities. As the National Park Service says – and what a phrase that is – “One example of this change is the treatment of the the Lesbian Gay Bisexual Transgender Queer [LGBTQ+] community. Doctors regarded homosexuality as a disease well into the 20th century. They could send men and women to psychiatric hospitals for their sexual preference. It was not until the 1970s that this ‘diagnosis’ changed” (x). That change was made due to advocacy from the LGBTQ+ community and the disabled community.
Additionally, the movement works to help people understand that disability isn’t automatically bad. Individual conditions or illnesses can be bad – no one is going to doubt that cancer is bad, for example – but disability isn’t automatically bad. “Disability” as a category is neutral. There are many people who love their disability!
Another demonstration of the disability rights movement is the quest to get more positive disability representation and to get more characters portrayed by disabled actors. This is part of the “Nothing About Us Without Us” aspect of the movement. One example of positive (or neutral) disability representation is that, in the new Disney movie Turning Red, one of Mei’s classmates has Type 1 Diabetes, as shown by the glucose monitor on her arm. And an example of a disabled character being played by a disabled actor is in the ABC sitcom Speechless, in which Micah Fowler, an actor with cerebral palsy, plays JJ, a character with cerebral palsy (x).
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There’s also the movement to change the views the average person has about disability. For example, in 1993, Jim Sinclair, an autistic person, spoke at the International Conference on Autism in Toronto. They addressed parents of autistic children, saying, “You didn’t lose a child to autism. You lost a child because the child you waited for never came into existence. That isn’t the fault of the autistic child who does exist, and it shouldn’t be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real. And we’re here waiting for you” (x).
And the disability rights movement is still going on today. Some things we work towards are making it illegal to pay disabled people less than minimum wage (read more about how that’s legal here); changing conservatorship laws and situations, such as the #FreeBrittney movement; and, in recent years, educating people on how immunosuppressed and other high-risk individuals deserve to be taken into consideration when it comes to COVID-19 restrictions.
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Want to learn even more? Temple University has an incredible timeline of the disability rights movement, which you can view here. It starts in 1815 and goes up to 2017. It’s a great primer on the movement, and it’s also not behind a paywall.
(Note: many disabled people, including myself, prefer “disabled people” to “people with disabilities.” It does of course vary from person to person, but almost every disabled person I’ve met prefers identity-first language.)
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9 Ways To Advocate for Disability Rights
Now that we’ve covered what the disability rights movement is, let’s talk about how you can be an advocate for disability rights. As a heads up, while many of these tips and strategies can apply to all people, most of them are aimed at non-disabled people.
If you’re not disabled, ask yourself what your motivations are
Essentially, you need to make sure you’re not putting yourself and your feelings ahead of the work. This advice applies to all types of advocacy – if you are not a member of the group you’re advocating for, ask yourself why you’re doing it. Are you doing it because you care about people affected? Are you doing it because you believe in the cause? Are you doing it to buff your resume?
I’m not saying that you shouldn’t support the cause unless your motivations are completely pure. But if you’re honest with yourself and you’re doing it to impress someone or to make yourself the center of attention or something else, you need to work extra hard to be a good ally.
Because, when you’re advocating for a group as an ally and not as a member, you need to make sure you’re not centering yourself.
And if people who are a part of the community ask you to leave, then leave. If they say, “We only want you with us if [xyz]” and that doesn’t apply to you, respect them. Respecting the community and not contributing to harm is what’s most important.
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Educate yourself on the disability rights movement(s)
It’s also important to know what you’re talking about. Yes, in the first part of this post I educated you on some parts of the disability rights movement. But you should learn more than what’s in this post. Especially because the movement can vary across states and countries!
One reason why this is important is that a law or policy you might think is good can actually not be, and because you haven’t researched the movement or that law/policy, you’re unaware that it’s not good. Like a lot of populations, disability is not a monolith. There are a lot of different types of disabilities! What is a helpful activity for one type of disability can be harmful for another, which is why there shouldn’t be a law mandating that activity.
For example, a lot of (hopefully) well-meaning people want people who don’t get the COVID vaccine to be prohibited from some activities. But disabled people know that a) there are some disabled people who can’t get the vaccine and b) that action would definitely be weaponized against the community in the future. Not to mention there are plenty of legitimate reasons to be hesitant. For example, Black Americans might be hesitant to get the vaccine because of the government’s history of testing on them, among other concerns. Given things like Tuskegee, that makes total sense!
Plus, a lot of marginalized people haven’t had equal access to the vaccine. It could be because they live in a rural area and have been unable to travel to somewhere with the vaccine (x). It could be because “If information on vaccines is not simple, culturally relevant, and translated into the languages spoken in each community, it simply won’t reach the people who need to hear it, and doses won’t get delivered” (x).
Plenty of people haven’t gotten the vaccine for extremely legitimate reasons, which is why it doesn’t make sense to completely ban people who haven’t gotten the COVID vaccine.
That’s just one example of why it’s important to educate yourself, but hopefully it gives you a good picture of why you should learn more about the disability rights movement before you start spreading information or ideas that you think are good … just in case they aren’t.
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Learn about Disability History
How is this different from above? The disability rights movement is one aspect of disability history, but there’s so much more to it.
For example, did you know that for 200 years, Martha’s Vineyard had the largest community of D/deaf people in the country? Britannica says, “The overall rate of Vineyard deafness peaked in the 19th century at an estimated 1 in every 155 islanders, which far exceeded the rate of deafness in the American population generally” (x). There was a highly-developed sign language used on the Vineyard that actually predates ASL!
Another example is that, when advocating for the ADA to be passed, around 60 disability advocates literally crawled up the Capitol steps after setting aside their mobility aids (x). They got out of their wheelchairs, put their canes aside, and crawled in order to demonstrate how inaccessible buildings were and how the ADA needed to be passed (x).
A final example is that many autistic people are moving away from using the term “Asperger syndrome” and instead are just using “on the autism spectrum.” And there’s a historical reason why! Did you know that Hans Asperger, for whom Asperger syndrome is named, was a truly horrible person? While he never formally joined the Nazi party, he definitely was pro-eugenics.
Warning: This sentence contains eugenics (and it’s awful). | Asperger “publicly legitimized race hygiene policies including forced sterilizations,” and actively participated in sending children to their deaths (x).
Yeah, I wouldn’t want to include his name in my life in any way, either.
Why should you learn disability history? Asides from the fact that you should know that info about Hans Asperger, here are a couple of reasons.
One is that you don’t want to argue for something as if it’s a new idea … but it has already happened. Like mentioned in the last point, sometimes the community at large is against something because of a history that you might be unaware of. Maybe the community has already advocated hard against something, so you don’t want to advocate for it.
But the other big reason is that you should know the history of the community you’re advocating for. You should demonstrate that you care about the community by learning about their important people and events.
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Stop or reduce using ableist words
A big thing you should do if you’re a disability advocate is stop or reduce your ableism through the ableist words and phrases you use. It’s hard to claim to be an advocate when you’re perpetuating harm against the community, even without realizing it. Intent doesn’t matter as much as impact does.
I say “stop or reduce” because ableism is rife in the English language. (Probably other languages, too, but as I only speak English I can’t speak to that.) Honestly you never realize how much you use ableist words until you try to reduce or stop using them.
For example, the following words are ableist: crazy, insane, stupid, idiot, moron, cripple/crippling, lame, junkie, turning a deaf ear, blind to the situation, etc.
What makes them ableist? It obviously depends on the word or phrase, but there are a couple of common reasons.
One reason is that if it compares a bad thing to a disability, then it’s ableist.
Another reason is the history behind the word. For example, did you know that “idiot,” “imbecile,” “moron,” and “stupid” were once used as different classifications of intellectual disabilities? (Source) So when you call someone an “idiot”, why it might not be as bad, you’re doing the equivalent to calling someone the R word.
It’s also important to know that you can be laterally ableist! Having a physical disability doesn’t mean it’s okay to use the word “insane,” for example. And the same is true for someone with mental illness but without physical condition to use the word “cripple.” I, as a cripple with anxiety, feel very strongly that it is not okay to say someone has “crippling anxiety,” for example. A personification of anxiety didn’t break my legs, crippling me.
The language we use affects other people, even if we think that it’s harmless. Learn more about everyday ableism in this post, which goes into more details about, well, everyday ableism.
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If someone says or does something ableist, ask them to not
This is such an easy way to advocate for, well, anything! If someone says something that they may not realize is racist, ableist, sexist, homophobic, transphobic, etc., ask them not to say that thing. For example, if someone says that they were “totally g*pped,” you should ask them not to use the phrase. Because did you know that “g*pped” is based on the stereotype that Romani people steal things? (Also, that the Romani people, who have been persecuted for centuries, generally ask non-Romani people to not use the word “g*psy”?)
If someone uses the R word, we ask them not to. If someone says “The weather is totally bipolar,” we ask them not to use a health condition as a comparison or joke.
Similarly, if you see someone trying to abuse the system, you should ask them not to. But make sure that you really know that they’re not disabled; don’t assume based on someone’s looks. Here’s what I mean:
Several years ago, I was in a coffee shop waiting to order. The woman in line in front of me asked the barista if there were restaurants that would allow her dog to come in with her. The barista said, “Just tell them it’s a service dog! They can’t legally ask what kind of service the dog provides.”
To her credit, the woman who asked was absolutely shocked to hear this. In the pause when she stared at him, I said, “Please don’t do that. I’m disabled and people often don’t believe me because people do things like that.”
I don’t remember exactly what the barista said after that, but he was shocked to hear that from me. It was like he genuinely didn’t think that there wasn’t anything wrong and that no one was hurt by doing that.
That’s the sort of thing that is important to stand up to. It’s not always as easy as someone you don’t know saying something as cut-and-dry as an obviously ableist and not-okay thing. But it’s still incredibly important.
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Amplify disabled voices
When it comes to disability issues, disabled people should be the ones to speak on them. But you can still help us! And one way you can do that is to amplify disabled voices.
Share disabled people’s posts on social media, especially their takes on health and disability issues. Share articles about health issues that are by disabled people. If someone asks for resources on a health and disabled issue, share resources by, you guessed it, disabled people.
And amplify them when they talk about other things, not just disabled issues!
Is there a sexism topic? Amplify disabled women.
Is there a homophobia topic? Amplify queer disabled voices.
Transphobia? Amplify trans disabled voices.
Race? Amplify disabled voices who are the race in question. (So amplify a Black disabled person if there’s an anti-Black topic and a Latinx disabled person if there’s an anti-Latinx topic.)
And if you amplify someone and other people who belong to that group say “Hey, that person actually isn’t a great representation of our opinion on x” or “Hey, that person has not-okay opinions about y,” listen to them.
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Figure out your company’s position on various disability issues
This is one way that you can really make a difference as an ally! If you are in a position where it is safe to do so, look into your company’s position on various health disability issues.
Who is eligible for health insurance?
What does health insurance cover?
What are the rules for in-person vs. work-from-home scenarios? Do you have to return to in-person work or lose your job?
Are people encouraged to take sick days? Do you have to have a doctor’s note to get more than 1 sick day off in a row?
These are just some questions that you should consider and, if possible, find solutions for. If people are technically eligible for health insurance when they work over 35 hours a week? Are people who work over 35 and below 40 hours a week actually getting health insurance?
Figure out the answers to these questions, and if the answers aren’t good, ask people higher up how things can change.
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Stop supporting organizations that claim to help disabled people but actually don’t
The organization that first came to mind when I wrote this is Autism Speaks. Many, many people with autism speak out against the organization, which is one reason why you shouldn’t support them.
Another reason why you shouldn’t support them is that, despite claiming that they support autistic people and their families, “Only 1% of Autism Speaks’ budget goes towards the ‘Family Service’ grants that are the organization’s means of funding services” (x). Instead, they spend 20 times as much on fundraising. What kind of organization claims to support people but spends more money claiming to support people than on actually supporting them?
Another reason is that AS only has “1 autistic person out of a total of 28 individuals on its Board of Directors” (x). Autism is not a condition where people with it can’t serve on a Board of Directors. They absolutely can, so AS should have more autistic people on its board.
These are just some of the many reasons why it sucks as an organization, and I’m sure it’s not the only organization that claims to help people while the people it claims to help dislike it. So if someone says, “Hey, we don’t like Autism Speaks,” you should listen to them.
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Listen to what disabled people have to say
In general, a lot of my advice boils down to this. Listen to what disabled people say. If they say, “You’re wrong,” listen. If they say, “You’re not helping,” listen.
Listen. To. Disabled. People.
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Like this post? Share it! Then check out:
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Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
Thanks for your advocacy for disabled people. I help disabled veterans to get their disability benefits with the VA and it is such a rewarding experience. Thanks for this post!
Important advice,,.sharing this post with some friends who need the support…thank you
Excuse me, but as a disabled person myself, I think way too many people are too hung up on the psychological aspects of disability, which only serves to distract from a greater priority – i.e. the URGENT need to get PRACTICAL matters attended to. I’ve had chronic pain and CRPS since I was young. My body is loaded with pain, including spinal OA and scoliosis. And that’s how I know which priorities are lacking.. Namely – that all paratransit buses I know of, no matter whether regular ones, or ambulances, have ATROCIOUS shock absorbers (or perhaps they even lack shock absorbers altogether!) Now if that’s not a gross infringement of the rights of vulnerable geriatrics and disabled who lack the health to fend for themselves, then what is?
Isn’t it shocking that all these years nobody has addressed this, and that as far as I know, it hasn’t been addressed in ADA Law? Isn’t it even more shocking, that Able-bodied people get to travel in vehicles (and buses) with sufficient shock absorbers, all the while the disabled have been enduring this seeming lack of shock absorbers? And isn’t it yet further-shocking that paratransits are considered “compliant with ADA” even when they are bare-bones, with not one grab-bar nearby one’s seat to bolster one’s spine against the jolting bus? Nor are there sturdy armrests, which can double as grab bars!!
How can it be that the ADA Law was so tunnel-visioned as not to emphasize a mandate for top-quality shock absorbers?? I mean shouldn’t that be a bare-basic requirement that anyone clear-sighted (rather than tunnel-visioned) would know to include in the Law??