Andrew Pulrang

5 Things Disabled People are Looking for in Healthcare Plans as the 2020 Elections Approach

Posted on November 7, 2019June 15, 2023 by Andrew Pulrang

A friend asks:

“Do you support Medicare For All? Why not? Don’t you believe everyone has a right to health care?”

Your coworker says:

“I think everyone should have healthcare, but how do we pay for it? And even if we can pay for it, how could we ever hope to pass such a huge and controversial plan?”

Meanwhile, your aunt wants to know:

“Do you really want the government in charge of your healthcare? And Is it fair that hardworking, responsible people should have to pay the medical bills for people who don’t even work? I don’t mean you of course …”

These are stereotypes, but nowadays they kind of ring true. They’re the sentiments that every disabled person even slightly engaged in the healthcare debate hears from every corner. That, and accusations of being a shill for “the other side” if you dare to ask critical questions and raise specific concerns as a disabled person. There’s no escape from it either, especially online. Now that 2020 campaigns are underway, you can’t plant a crutch or turn a wheelchair without running into someone’s passionate beliefs about healthcare. And they want you to believe, too. They’ll even point to your disability as a reason why you should support their position on healthcare.

The fact is that people with disabilities do have unique and important priorities that aren’t always addressed in healthcare plans. For people with disabilities, they matter more than ideology, poll-tested rhetoric, or political affiliations. This is the substance of the healthcare debate for the disability community.

1. Any new plan should, at the very least, make healthcare more affordable for every disabled person.

The simplest goal is to make all healthcare free, meaning no individual charges for services or insurance, with everything financed through taxes. But a plan like this will be hard to pass, and taxes, too, need to be affordable. At least some disabled people might be willing to accept some copayments and premiums, if they were truly affordable and considerably less expensive than they are now. No cost is best, and worth pursuing. But lower cost would be an improvement worth considering.

2. Disabled people need a system where health insurance eligibility is impossible to lose.

For people with disabilities, this is as important, if not more important than affordability. Nobody should have to constantly hit an arbitrary and fluctuating medical, financial, and administrative sweet spot just to maintain their health insurance. But disabled people have to worry about this all the time. Possible loss of health insurance affects and constrains every major decision in our lives. Our real, practical freedom would improve immensely if we didn’t have to think about being “on” or “off” health insurance ever again.

3. Any new healthcare plan must provide full and generous coverage of long-term care in disabled people’s own chosen homes.

One reason this is such a pivotal issue for disabled people is that it’s easy to imagine a revolutionary healthcare plan passing, ushering in a golden age of fair and comprehensive healthcare for everyone…but with long term care left out. Most people barely know what long term care is or how it’s paid for now, and just aren’t asking for it in healthcare proposals. But disabled people are asking, and the answers we tend to get are vague at best. People with disabilities must be able to get the care they need to maintain their independence in their own homes, and we don’t want to see a new healthcare plan that simply dumps money into nursing homes. For many of us, this is a potential deal-breaker.

4. It must include full and generous coverage for medical and adaptive equipment, with a minimum of red tape and waiting.

One of the biggest complaints disabled people have about Medicaid, Medicare, and private insurance is that they are all nightmares to deal with when it comes to equipment like wheelchairs, ventilators, communication aids, and other assistive technologies. It’s not enough for a healthcare plan to say it “covers” medical equipment. Not having to pay out of pocket for a wheelchair sounds like heaven, but not if you can only get one every 10 years even though you use it every day and it takes months to get competent repairs. There is a lot of room for improvement here, but it won’t happen if we don’t insist on it.

5. Cost control measures must include real input from people with disabilities.

Almost every healthcare proposal in play relies at least partly on “cost containment,” a promise that through some combination of better management, less bureaucracy, and more rationally applied science, a fairer and more generous healthcare system will actually be cheaper. It’s true that healthcare in the U.S. is comically expensive. And it’s not hard to believe that there’s a fair amount of waste, gouging, and medical quackery involved. But what look like “ineffective” or “wasteful” treatments to some are often life-sustaining support services for people with disabilities. People with real-life knowledge of what it takes to live well and independently with disabilities must have a real voice and real influence when decisions are made about what is and isn’t worth paying for in any new healthcare system. Our lives really do depend on it.

The disability community includes people with a wide variety of beliefs about healthcare. But regardless of our ideological preferences, disabled people also have certain very specific things we need to see. And we are going to keep asking about them, even when it’s not politically convenient.

For more information: This chart from the Kaiser Family Foundation compares the major for healthcare bills currently being discussed, with details that include coverage for disability-related services.

Disability Vote, Health

About

Andrew Pulrang

Andrew Pulrang is a disability blogger, co-coordinator of #CripTheVote, and worked in Independent Living for 22 years.

About Rooted In Rights

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Shopping for the Best Presidential Candidate? Here’s a List to Help.

Posted on September 10, 2019June 15, 2023 by Andrew Pulrang

It can be hard for any voter to figure out which presidential candidate to support. For disabled voters, it can be bewildering and downright painful.

You find a good candidate — someone you’re really excited to vote for, who promotes policies you care about and represents your deepest values and political philosophy. Then they say something cringeworthy about disability or put forward a thoughtless position on a disability issue. Was it a momentary gaffe, a fixable problem, or a deeper sign of the candidate’s ableism?

Or maybe you’re ambivalent about politics, with no strong preference for any party or candidate. But it feels shallow to base your vote solely on a few disability issues, or your sense of identity as a disabled person.

Deciding who to vote for in a high-stakes election is a little like grocery shopping. And with so many candidates to choose from at current count, this time around it feels a lot like we’re wandering the aisles of a superstore.

Having so many choices is exciting at first, but soon becomes exhausting and dispiriting. The shelves are crammed with brightly labeled products, but there are few reliable clues to what’s inside them. And to top it off, the store seems to be accessible when you first go in, but the aisles are cluttered, the lighting is bad, and the accessible restroom is out of order.

Here’s some advice to navigate the situation: What they say about shopping is also true in politics: don’t shop hungry without a list!

In elections, as in shopping, relying on inspiration and instinct alone is both unreliable and expensive. With that in mind, here is a shopping list that disabled voters can use to shop with purpose in the 2020 Election. Check off as many items as you can!

Aisle 1: Information on Candidate Websites

Easy-to-find sections devoted to specific disability issues.
Mentions of disability in other policy sections, (i.e., Health Care, Education, Civil Rights, and Criminal Justice).
Sections designated specifically to disabled supporters and volunteers.

Aisle 2: Candidate Histories

Past votes and decisions that support the disability community, (i.e., state budgets or bills in Congress).
Thoughtful public statements about disability and/or disabled people.
Positive reports from disabled voters who have met the candidate in person.

Aisle 3: Personnel

Disabled people in both paid staff and volunteer campaign positions.
Effective recruitment and management of volunteers with disabilities.
Commitment to appoint disabled people to key administration posts if elected.

Aisle 4: Accessibility and Representation

Campaign events are accessible and respectful to disabled people in the audience.
High-quality captions provided for all spoken content.
The campaign website is accessible by Section 508 standards.
Multiply-marginalized disabled people are asked to speak at panels and events. (i.e., disabled LGBTQ+, people of color).

Aisle 5: Disability Rhetoric

The candidate’s choice of disability terminology, (i.e., disability, challenged, special needs).
More talk about empowerment, less “inspiration porn.”
More talking to disabled people directly, as “You,” less often than as “They.”
The candidate addresses all disabled voters, not just a specific group, (i.e., disabled veterans, kids with disabilities, “special needs parents.”)

Freezer Aisle: Overall Tone & Vibe

The candidate’s interest in disabled voters seem sincere rather than pandering.
The candidate provides a sense of security and reassurance that they support the disability community.

Finally, before going through the check-out lane, (a.k.a. “voting”), ask yourself a few critical questions:

Am I making excuses for serious disability-related problems because I otherwise love this candidate?
Am I a lot less forgiving of disability-related problems than I otherwise would be because I happen to hate this candidate?
Am I overlooking other ugly prejudices because a candidate is otherwise “good” on the disability issues I care about most?
Am I assuming that a candidate is probably good on disability issues because they are from the same political party or ideology as me?

Now you’re ready to check out. Good luck on your shopping trip! And if you find any bargains, could you please let me know?

Disability Vote

About

Andrew Pulrang

Andrew Pulrang is a disability blogger, co-coordinator of #CripTheVote, and worked in Independent Living for 22 years.

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Here’s Some Free Advice for Presidential Candidates on How to Talk About Disability

Posted on June 25, 2019June 15, 2023 by Andrew Pulrang

The 2020 Elections are still 17 months away and there are currently 26 people are running for President. We’re just about to see the first two Democratic Debates, set for June 26 and 27.

With that in mind, I’d like to offer some free advice on disability to all the candidates, which should apply regardless of party, ideology, or past behavior.

1. Don’t separate disability from other issues.

Candidates tend to address disability issues and the disability community only when the subject is brought to their attention, or when it’s a specific “disability issue.”

It’s important to recognize that disability issues intersect with all other issues, including, but not limited to: health care, education, economic policy, law enforcement and incarceration, immigration, civil and human rights, and infrastructure. And, disabled voters are part of all other constituencies.

So, don’t just speak about disability when spoken to about it. Bring it up on your own, unprompted, because it’s an issue relevant to many, many voters.

2. Remember that language is personal and important.

Don’t refer to us as “handicapped,” “mentally- or physically-challenged,” “special needs,” or any other euphemism engineered to make us feel better. These terms aren’t just awkward. To many of us, they are cringeworthy. We are people with disabilities, or disabled people.

In fact, you may have heard that it’s important to use “person first” language, referring to us as “people with disabilities” rather than “disabled people.” For most audiences, this is probably still your safest bet. But you should know that many in the disability community are shifting to “identity first” phrasing, calling ourselves “disabled people.” Switching between person first and identity first language can signal your awareness of an evolving, vibrant disability culture.

But what’s most important is respecting each individual’s preference. There’s no single “correct” way to refer to disabled people. Just follow your audience’s lead.

3. We want solutions, not sympathy.

Disabled people often feel invisible. So publicly addressing us and our concerns is important. But it matters how you do it.

Don’t get into the habit of using disabled people as examples of victimhood. We experience injustice every day, but we are not helpless, and it’s insulting to be everyone’s go-to group for plucking heartstrings.

At the same time, we aren’t impressed by broad, poetic tributes to disabled people in general and our supposed admirable qualities. Too often, politicians speak of disabled people’s resilience, creativity, and courage. But we display these qualities simply to survive in the face of the physical barriers, discrimination, and bureaucratic chaos that plagues disabled people’s lives.

Instead of praising our admirable virtues, tell us what you would do to improve our quality of life. Politicians are in a unique position to fix the problems that force us to be so admirable in the first place. We’re not interested in your approval. We want to hear your solutions.

4. Avoid comparisons and analogies.

You may find yourself wanting to compare disability with other, more familiar experiences, but rhetorically and politically, it’s very risky, and often off-base.

Don’t draw analogies between disability and race, gender, sexuality, or any other experiences of marginalized groups. Ableism isn’t “just like” racism, sexism, or homophobia. There are some similarities and overlaps, but they shouldn’t be directly compared. And since disabled people can be of multiple marginalized identities, such comparisons don’t even make sense.

And please don’t equate the time you had a cast for a couple of months, or a disability simulation you tried for an afternoon, with lifelong disability. You may have gained a small insight into physical barriers and ableism, but don’t overstate. Claiming a depth of understanding you can’t have is disrespectful.

5. Talk to us, not just about us.

Our struggle for recognition, rights, and respect can be understood as a struggle to be “subjects” and not “objects.” Most political speeches cast disabled people in the third person, as “they.” Instead, address disabled people directly with the second person “you.” And in personal, meet-and-greet settings where a disabled person is present, don’t speak about them in the third person to a non-disabled person … as in, “Did we find your daughter a good seat for the town hall?” Disabled people are voters. We have opinions, ideas, and feelings of our own. Speak to us. As a familiar saying in the disability rights movement goes, “Nothing about us without us!”

On a related note, talking to parents of disabled people isn’t the same as talking to disabled people themselves. It’s perfectly appropriate to speak to parents and families about disability issues, but you should consider them a related but separate constituency.

Now more than ever, disabled voters will be watching and listening not only to your plans and policies, but also to how you address us. It’s not just about respect; it’s good politics.

Disability Vote

About

Andrew Pulrang

Andrew Pulrang is a disability blogger, co-coordinator of #CripTheVote, and worked in Independent Living for 22 years.

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Disabled Person Online? Here are Some Tips for Navigating the Internet.

Posted on July 19, 2018June 15, 2023 by Andrew Pulrang

We are all a bit skittish about the internet these days. There’s shady data collection, “fake news,” and the addictive qualities of social media to contend with, not to mention the emotional toll that online life can take when it turns sour.

And yet, disabled people still find friendship, empowerment, and vibrant community online. Traditional methods of social support and community-building have advantages, and not everyone can access the internet easily. Some people just don’t like the internet and never will. But the internet has undeniably supercharged disability culture. It’s increasingly impractical to be active in the disability community now without at least some use of the internet.

Here, then, are some tips for disabled people on how to make the most, and avoid the worst, of disability online:

Engage thoughtfully, and take care of yourself.

There is no single “Disability Community” online; there are dozens. Disability on the internet comes in all flavors: encouraging, empowering, inspirational, funny, angry, demanding, hurt, optimistic or pessimistic, secular or religious, liberal or conservative. There are communities for every kind of disability, and for disabled people with intersecting identities and interests related to race, gender, sexuality, religion, nationality, class, and more.

Most online disability discussions are friendly, and most disability debates are civil. Still, you will run into people and ideas that rub you the wrong way, even offend you. Keep an open mind. When something puzzles or upsets you, explore it. Ask questions. But in the end, if you find something impossible to digest, remember that it’s okay to have your say and then move on. It’s not your job to convince everyone.

Note too that when you interact online with something that makes you upset, you are essentially voting to see more of it. That’s how social media platforms like Facebook work. That may be fine with you. It’s important to know about disturbing events and injustices. But if you start to find it all too overwhelming, think twice before angrily sharing and commenting on every ableist thing you see.

Be clear about what you are looking for.

You might be looking for friendship, supportive conversation, intellectual debate, humor, awareness, motivation, inspiration, career opportunities … even fame! There are no right or wrong reasons. The key is to be self-aware and truthful about it. State your goals, interests, and affiliations upfront in your social media profiles. Tell people honestly and without judgment what you do and don’t want to talk about. Above all, don’t hide your true motivations, or pretend to be someone you are not.

Respect the conversations you are in.

Activism, emotional support, and practical advice make for vastly different kinds of conversations that are still often confused and mistaken for one another. Plus, hard as it can be to accept, some conversations are just not meant for you … no matter how brilliant your observations on the subject might seem.

You can participate in more than one kind of conversation. But do your best to keep track of which is which, adjust your tone and approach accordingly, and don’t barge into other people’s spaces.

Choose your “friends” carefully.

Before “friending” or “following,” someone, ask yourself why. Is it for personal friendship, shared interest, or professional connections? Do you want to connect with people who share your interests, including strangers, or only with people you already know?

Speaking of which, distant relatives and old friends from school can be a mixed bag. They’re fun to reconnect with, but that nice kid who sat in front of you in math class may have changed since then, in surprising and upsetting ways. Have a look at what they post before you “friend” them, and don’t be afraid to disconnect if someone starts getting on your nerves. Ableism exists everywhere. It can come when you least expect it, and from “friends” just as often as from opponents and trolls.

Know your trolls.

Some people on the internet do more than simply disagree; they want to upset you. These “trolls” consider it a “win” if they make you freak out. If you ignore them at the start, most trolls will back off and seek conflict elsewhere. “Don’t feed the trolls!” is a little simplistic, but it’s also kind of true.

Some trolls will also try to make you feel weak or irrational for being upset by what they say. This is known as “gaslighting.” It’s when someone deliberately taunts and insults you, and then blames you for losing your cool. Don’t fall for it! Follow your instincts about how much aggravation or abuse you’ll put up with.

Don’t lean too hard on the internet for your social life.

The internet can be an important source of friendship and support, especially for disabled people who encounter barriers to face-to-face socializing. Online communication can be rich and rewarding. But it can also be superficial and gossipy. Keep that in mind, and try not to gauge your self-worth solely on your current social media “popularity,” or lack of it.

The internet is both a microphone and a community for people with disabilities. A bit of boundary-setting and self-care can make both work better for you.

Activism and Advocacy, Disability History and Culture, Disability Vote

About

Andrew Pulrang

Andrew Pulrang is a disability blogger, co-coordinator of #CripTheVote, and worked in Independent Living for 22 years.

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Can We Stop Arguing About the “Right Way” to Be a Disability Activist?

Posted on May 4, 2018June 15, 2023 by Andrew Pulrang

There is more than one way to do disability activism. This should be obvious, but needs repeating.

There are plenty of internal arguments inside the disability community, about race, gender, sexual orientation, age, social class, and disability type, not to mention several vastly different philosophies of disability itself. These disagreements can be upsetting, but at least they reflect important differences with real-life consequences. And when we are at our best, we come out of these arguments wiser and more humane.

Sadly, over the last year or so, a more annoying and wasteful conflict has emerged over what counts as “real” disability activism.

The main divide seems to be between activists who mainly work online, and those who participate in events and actions in person. Some of us choose one approach or the other because we like it, or simply because we are better at it. Others of us must choose to do what our own disabilities and circumstances allow. So it is a also a clash between people whose disabilities and supports allow them to travel and undertake tiring activities, and those whose disabilities and relative lack of resources make “in person” activities difficult or impossible. This, in turn, intensifies the ongoing debate between different views of disability itself. Is disability an adaptable social condition, or is there still an irreducible medical component that can’t always be shrugged off?

One side is quick to judge others for a supposed lack of seriousness or commitment. The other side is quick to take offense when certain kinds of activism are praised, and others ignored or disparaged. Shade is thrown. Motives are assumed.

But such debates aren’t entirely pointless. Online activism can be fleeting and superficial, and it’s sometimes hard to know for sure how effective it is. Meanwhile, traditional political action can be self-indulgent. It’s high on spectacle and empowerment, but sometimes the drama of live protest overshadows its goal. But what’s frustrating is that the disability community should be able to resolve this kind of conflict better than anyone.

Here are 20 different ways you can be a disability activist:

Participate in protests and demonstrations on disability issues.
Analyze and develop policy proposals, and help explain them to the disability community and the general public.
Organize disability activists in your home community.
Join and / or donate to disability organizations you like.
Respond to action alerts on disability issues.
Call, text, and / or write personal letters on disability issues to elected officials.
Meet in person with elected officials to inform them on disability issues.
Use Facebook, Twitter, and other social media to communicate with elected officials and candidates, while amplifying disability issues to the wider community.
Repost disability issue articles and alerts by others to your social media spaces.
Make artwork and shareable graphics for disability activism projects.
Help manage online disability discussions and forums.
Write editorials on disability issues and distribute them through blogging, freelance writing, and / or social media.
Write letters to the editor of your local newspaper.
Join other social justice movements, like environmentalism, the Women’s March, Black Lives Matter, etc., and help make them more accessible and disability-conscious.
Attend city, town, or village meetings to monitor and comment on local disability issues.
Document physical barriers to people with disabilities through photos and / or accessibility mapping applications.
Report physical barriers to business owners, and give them practical suggestions on how to fix them.
Report violations of disability rights laws to relevant authorities and follow up for further action.
Volunteer for candidates and / or organizations you like and offer yourself as a resource specifically on disability matters.
Talk about disability issues with friends, family, classmates, and coworkers.

Any of these activities can be useful and productive, as long as they are done with integrity. Each approach supports all the others, and they are all essential to achieving our shared disability goals. They all count as disability activism.

There will always be people in the disability community who feel compelled to point out how other disabled people are “doing it wrong,” especially when it comes to something as important as disability activism. But it might help if we can all relax a bit, and each evaluate our own activities for ourselves. How can we do this?

Stop implying that some kinds of disability activism are inferior to others, and make a habit of recognizing the kinds of activism that don’t get much recognition.
Choose the disability activism that matches your talents, interests, disabilities, and resources, without worrying about what other people think.
Be proud of what you do, no matter what. Don’t automatically interpret praise and excitement for one kind of activism as an insult to yours.

This should not be difficult. After all, if the disability community can’t agree to embrace doing things in a variety of different ways, then what’s the point of it?

Activism and Advocacy, Disability History and Culture

About

Andrew Pulrang

Andrew Pulrang is a disability blogger, co-coordinator of #CripTheVote, and worked in Independent Living for 22 years.

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The Americans with Disabilities Act: Then and Now

Posted on July 26, 2017June 15, 2023 by Andrew Pulrang

On Thursday, July 26, 1990, President George H. W. Bush signed the Americans with Disabilities Act (ADA).

I was in my first year working at a Center for Independent Living, and my understanding of disability was evolving. I was starting to realize that inaccessibility and disability prejudice were more than just personal annoyances. I was beginning to feel that simply hoping for my needs to be met wasn’t enough; I should be expecting more. I was discovering that disabled people were organizing around something more empowering than charity telethons: our rights.

However, even though I’ve had physical disabilities all my life, at age 23 I still knew very little of substance about disability rights. The idea of a big civil rights bill for Americans with disabilities was exciting to me, but I had practical questions:

We know how to make buildings more accessible, but how do we get architects and builders to bother doing it?
How much can we really expect strangers to meet our “special needs?”
Can we actually turn our backs on charity, for real, and rely on something more solid?

The ADA bill was coming to a final vote, then moving into its first implementation phase, just when I was grappling with these basic questions. As it happens, the ADA had answers …

The ADA applied a broad set of physical accessibility standards to businesses and public buildings. A baseline of accessibility would be standard operating procedure nationwide. Accessibility would no longer be viewed as an optional add-on.
The ADA fleshed out the idea of “reasonable accommodations.” It’s not so much a menu of specific required services, but rather an affirmation that adapting to each disabled person is a legal responsibility, not a kindness. The term suggests that some adaptations might be, in fact, more than a disabled person can “reasonably” expect. But, being accommodated or not would no longer be an all or nothing proposition. And, the fact than an accommodation might be a bit hard or require effort would no longer put it out of reach.
Above all, the ADA strongly established that both broad accessibility and individual accommodation are civil rights. Disabled people have not just a moral right, but a legal right to equal access and opportunity. Most significantly, these rights apply to everyone with a disability, no matter what the disability, whether people feel like respecting them or not, and regardless of the character or people skills of the disabled person involved. You don’t have to act a certain way, or be liked and admired personally, to get what you need.

Figuring out how the ADA was supposed to work helped me understand my role in society as a disabled person. I think it has done the same for a lot of disabled people since then, and that by itself is enough to make the law a success.

On the other hand, a lot of the ideas I absorbed in the early days of the ADA have turned out to be wrong.

Accessibility requirements didn’t do much in older buildings and neighborhoods. Business owners weren’t excited about attending free seminars on ADA compliance and serving customers with disabilities. ADA requirements are technically the law, but in practice, the law functions more like an especially good set of suggestions … helpful, but not quite the righteous enforcer we expected.

Every July, we celebrate the Americans with Disabilities Act, while we also ask ourselves and each other: Is the ADA still relevant? Does it still matter?

I think it does. The ADA is still the most complete, practical roadmap for disability rights we have. Its principles and practices are the backbone of our movement, and probably still will be 27 years from now. And it’s still the introductory class for every disabled person trying to figure out, for the first time, what disability rights can actually mean in real life.

Disability History and Culture, Policy

About

Andrew Pulrang

Andrew Pulrang is a disability blogger, co-coordinator of #CripTheVote, and worked in Independent Living for 22 years.

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Dealing with Medical Ableism

Posted on June 9, 2017June 15, 2023 by Andrew Pulrang

I have a tracheostomy and use a ventilator to breathe at night. It works well for me, and I have no regrets, but every couple of years, I wind up in the hospital with some kind of upper respiratory infection. As Congress tinkers with health insurance like a Jenga player on six espressos, a recent stay in the hospital for a nasty but manageable bronchitis led me to think about the various awkward personal experiences of actual health care when you’re disabled.

Most of us can remember times when a doctor or nurse acted like they didn’t believe us. Sideways looks and prying, investigative questions often suggest that the medical profession regards patients with disabilities as vaguely compromised.

While I have never had a doctor or nurse directly doubt or contradict me, medical professionals often talk to my family or friends instead of me to gather information when I’m sitting right there. That’s why I prefer to meet with my doctors alone.

Lately, this type of ableism has gotten better, with medical professionals looking to me for guidance on treatment, especially when it relates to my disabilities. In the hospital last month, I never once felt like my word, competence, or intelligence were doubted. That’s a big improvement.

Weird stuff still happens though:

A nurse’s aide taking my blood pressure jokes, “Your arm is so thin, I could break it!”
I ask a nurse to take my tracheostomy tube over to the sink and clean the gunk out of it. He hems and haws, finally says he’s not allowed to mess with it, and will call Respiratory to do it instead.
A discharge planner wants to know whether I drive, if I live alone, and who helps me take care of my ventilator.

The social justice term for these is “microaggressions,” the kind of small humiliations that don’t do much harm on their own, but over time can poison even the most resilient souls. You could also call it “amateurism,” a mix of passive ableism, thoughtlessness, and inexperience.

I do find there’s a little less amateurism in hospitals now than there was, say, ten years ago. More importantly, I find I also process it differently. When that nurse’s assistant made the flip, thoughtless comment about my thin arm, it felt more surreal than offensive. But, I didn’t say anything about it.

A few years ago, I might have stayed quiet out of embarrassment or even fear. I mean, do I really want to piss off a nurse who is taking care of me … with needles and drugs and stuff?

I let it slide this time, too, but for a different reason. I knew it would be cruel to shame this quite young, probably inexperienced woman for a minor faux pas, or worse, complain to a superior who could truly make her life harder in significant ways. Essentially, I checked my privilege. Sick, weak, wired up, and disabled as I was, I had more power to make her whole week suck than she had to ruin my morning.

I did lose my cool with a different nurse who was having a hard time understanding the help I needed late one night. I yelled at him. A decade ago, in the same situation, he would have snapped back at me, turned really cold, or been crushed and wounded. Instead, he somehow managed to back off and give me some space, without making me feel abandoned. A bit later, he accepted my apology with relaxed good humor. If he took it personally, he hid it well, but I don’t think he did. That made all the difference.

Maybe that’s the key to dealing with medical ableism, especially in hospitals. Everyone relax a little. Disabled people: stick up for yourself if you’re a disabled patient, but don’t assume you’re the always the most oppressed person in the room. Medical professionals: listen to disabled patients and try believing what they say. And we might all do well to take those inevitable awkward moments a little less personally.

Health

About

Andrew Pulrang

Andrew Pulrang is a disability blogger, co-coordinator of #CripTheVote, and worked in Independent Living for 22 years.

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My Journey with Disability Language and Identity

Posted on April 10, 2017June 15, 2023 by Andrew Pulrang

Are we “handicapped” or “disabled,” “disabled people” or “people with disabilities,” “differently abled” or “special needs?” The debate over disability language is exhausting and exasperating. But I come back to it because the ever-changing ways we talk and think about disability track my own journey with disability.

When I was very young, I remember my father saying “He has problems” to refer to my disabilities. This usually happened when he had to explain to a stranger some accommodations I would need. This was my father’s makeshift way of pointing out my disabilities without telling a long personal story. It didn’t offend me, but I do remember thinking the phrase was awkward. Thinking about it now makes me cringe a little.

Through most of my childhood and into my teens, I used “handicapped,” because it was the accepted term in the late ‘70s and early ‘80s. It made sense to me at the time. A “handicap” is a disadvantage, but not necessarily a serious one. I assumed that my physical impairments would limit my potential, but not too badly and not in every aspect of my life.

I was otherwise a pretty confident kid, so this feeling of minor hindrance was fine with me. “Handicapped” seemed like a good fit with my experience, and it required no explanation.

Then, around the time I left high school and started college, my father learned the phrase “person with a disability” from disability activists he met through his public health work. I think it changed his thinking about disability in a positive way, and for years he tried to convince me that it was a better term than “handicapped.” It had something to do with being a “person first” and “disabled by society,” not by my impairments, but I wasn’t having it. I already had it all figured out. This was a Dad thing to me, and I was a teenager.

I graduated from college in 1989, the same year d/Deaf students at Gallaudet University were in the news, demanding the appointment of a d/Deaf president. It was the first time I had heard of anything like “disability activism.” Meanwhile, the Americans with Disabilities Act was moving towards passage, and that introduced me to the broader disability rights movement.

In 1990, I started working for my local Center for Independent Living. Again I heard about the same “person first” language my father tried so hard to explain, but this time, it stuck, likely because it came from authentic disability activists, most of whom were disabled themselves. From my new friends and colleagues, it finally started to make sense. And while I never liked the awkward phrasing, I accepted it, because it was the new, progressive term within the disability community.

“Person with a disability” also fit my young adult view of disability. Disability was a “thing” that I “had,” not a “someone” that I “was.” For a long time, that was a massively important distinction.

After more than 20 years, when I was in my mid-40s, I left Independent Living Center work, partly because I wanted to explore disability culture and activism in other ways, especially online. One of the first things I found was that in the 2010s, the most interesting disabled people out there said that they were “disabled people,” or just “disabled,” and called it “identity first” language. This was in direct opposition to “person first.”

I was relieved. “Disabled” is much smoother to write and say than “person with a disability.”

The more I thought about it, “identity first” language started to again change how I thought about my disabilities. I stopped worrying about whether or not my disabilities “define” me, and started to embrace the fact that like it or not, I am part of a community, a shared identity. I’m disabled. And I do like it.

There are strong links between language about disability and thinking about disability, both in my own life and in the broader disability community. As tiresome as it can be to keep up with all the ways of thinking about disability language, it helps describe and shape who we are. Today, I find myself more comfortable with my disability identity than I have been since childhood, and much more empowered and proud.

Andrew Pulrang is a disability blogger, co-coordinator of #CripTheVote, and worked in Independent Living for 22 years.

Activism and Advocacy, Disability History and Culture, Race and Disability

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Andrew Pulrang

Andrew Pulrang is a disability blogger, co-coordinator of #CripTheVote, and worked in Independent Living for 22 years.

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