Six Years Pretty Old In Blog Years

Picture of a cupcake with a single lit candle in it, next to the words “5th @nniversary”

Six years ago yesterday I tapped “Enter” and uploaded my first post at Disability Thinking. I consider the blog a success because despite many ups, downs, and false starts, I have more or less kept this thing up and current for six whole years. And going forward, I see no reason not to keep blogging on disability topics for another six years at least.

The archives are all on the right, so feel free to look around … and maybe be a little forgiving of some of those early posts!

Disability Blogger Linkup - February 2019

Disability Thinking: Disability Blogger Linkup

Welcome to the monthly Disability Blogger Linkup! If you are new to this, click here to see previous linkups.

The idea is to share something you’ve written that’s about disability in some way. Please be sure to link to the specific article or post, not just the main page of the website it’s on. Also, to make the links easier for visitors to identify, in the “Your name” blank, type the title of the article you are posting. In the “Your URL” blank, paste the URL address of the item. Like this:

Screen shot of Mister Linky’s entry form with Your Name and Your URL spaces circled in red. The Your Name blank is filled by “Title of the piece you are sharing. The Your URL blank is filled by “http://www.publicationname.com/article,html”

Then click the “Enter” button.

Closeup of a grey computer keyboard with a red wheelchair symbol on the center key

Please don’t post pieces that are basically advertising or endorsing a product or service for sale. There’s nothing wrong with promoting a specific product or service, but that’s not what this writing share is for. You may however share a video or audio program if that’s your preferred medium.

This linkup will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, April 8, 2019.

That’s it! If you have any trouble making it work, or have any questions, feel free to email me at: apulrang@icloud.com.

Monthly Reading List - January 2019

Disability Thinking - Monthly Reading List

Each month I select and share five disability-related articles I read the previous month. Here are the five from January 2019:

4 Ways To Respect The Needs Of Employees With Disabilities
Amanda Reaume, Forbes - December 14, 2018

I’m not sure why, but Forbes has been publishing a lot of articles on accommodating employees with disabilities. It is a business magazine, so it fits with its profile, but the number of articles on this topic is surprising. I wonder if there is a specific reason for this. In any case, the articles are usually pretty good, though not very ground-breaking or audacious. It’s mostly standard “disability is diversity” and “being decent to disabled people is good business” fare.

Picture of a stack of newspapers

Navigating the Wheelchair Accessible Path to Adoption
Katrina Kelly, Center for Disability Rights Blog - January 2, 2019

A great and very personal take on a disability topic not often discussed, but probably more common and relevant than most people would think.

Hiring People with Disabilities is Good Business
Ted Kennedy, Jr., New York Times - December 27, 2018

Again, the disability employment arguments are pretty standard and unchanged for decades. It’s essentially the same pro-business argument that took shape right after passage of the Americans with Disabilities Act. It’s not a bad argument, but it might be a little stale. It also might be more valid in “white collar” workplaces than it is in lower wage occupations.

Why cast Bryan Cranston as a quadriplegic man when disabled actors are queuing up for roles
Rachel Charlton-Dailey, Metro.UK - January 9, 2019

This to me is the best argument for why it’s morally objectionable for non-disabled actors to platy disabled characters … not just representation for the audience, but employment opportunities for disabled actors who need to make a living.

I Prefer That You Say I’m “Disabled”
Robyn Powell, Dame - January 15, 2019

A nice articulation of a classic disability question … how we want people to refer to us, and how we think of ourselves.

The Disability Alphabet: C Is For ...

Disability Thinking … The Disability Alphabet
“C” Scrabble tile logo with caption Is For …

I’m covering just one this time, since there is more than enough to be said about it to fill one blog post …

Cripple / Crip

Definitions

Dictionary.com:

* Offensive - a term used to refer to a person who is partially or totally unable to use one or more limbs.

* an animal that is similarly disabled; a lame animal.

* Offensive - a person who is disabled or impaired in any way: a mental cripple.

* anything that is impaired or flawed.

* a wounded animal, especially one shot by a hunter.

Do follow the Dictionary.com link because there is a detailed “usage note” that discusses the historical and current acceptability of “cripple,” as compared with “handicapped,” “physically challenged,” and “disabled.” While it presents a fairly up to date analysis of these terms, it deems “cripple” simply offensive, and doesn’t mention disabled people using “cripple” as a reclaimed term of irony or pride. Which, as you will see, is an interesting ommission.

Wikipedia:

A “cripple” is a person or animal with a physical disability, particularly one who is unable to walk because of an injury or illness. The word was recorded as early as 950 AD, and derives from the Proto-Germanic /krupilaz/. The German and Dutch words /Krüppel/ and /kreupel/ are cognates.

By the 1970s, the word generally came to be regarded as perjorative when used for people with disabilities. *Cripple* is also a transitive verb, meaning “cause a disability or inability”.

Wikipedia does discuss disabled people reclaiming the word.

Wikipedia also says that the street gang “Crips” got the name “when members started carrying a cane which gave the impression they were crippled.”

Common Uses

It’s possible that “cripple” and “crip” generate more feeling and conflict in and around the disability community than just about any other term. The conflict centers on two opposing uses of these terms.

  1. “Cripple” is a derogatory term, a slur against disabled people, such as when a non-disabled person refers to or directly calls a wheelchair user “a cripple,” or when a disabled person dejectedly refers to themselves as “a cripple.”

  2. “Cripple” is a term of pride, self-confidence, and an enjoyable transgression for disabled people, as when disabled friends working together to assert their pride ironically refer to themselves as “cripples” or “crips.” The disability blogger Smart Ass Cripple uses the same principle to project an irreverent and, paradoxically, empowered take on disability. #CripTheVote is doing something similar, too. This turning a negative term into a positive is known as “reclaiming.”

These two opposite uses are further complicated by a third category, the everyday use of “crippled.” On the surface, they have nothing to do with disabled people ... as when we call a broken down vessel as a “crippled ship,” or when we say that their ability to carry out a project has been “crippled” by some circumstances. There’s always an implied negative view of disability in these, but it’s always distant enough that people can credibly deny they mean anything derogatory. And like other off-topic, causal uses of slurs, some feel it’s important to call it out, while others think it’s not a big deal.

Problems and Misunderstandings

First there’s the classic misunderstanding or dispute that hangs around other “reclaimed” slurs. “If you can call yourself a “cripple” or “crip,” why can’t I call you one?” This is easily answered. It’s the same reason it’s okay to use certain kinds of jokes or terms of endearment within your immediate family, but not in front of strangers or directed at your boss or coworker. But the objection persists, sometimes from people who sincerely don’t understand and view it as a double standard, other times cynically, as a rhetorical weapon to discredit disability culture and activism more broadly.

On the other hand, some disabled people truly just can’t stomach any use of “cripple” because it brings back traumatic memories of being taunted and explicitly discounted. Some disabled people are unaware of or confused by “reclaiming,” but plenty of others understand it completely, and simply don’t care. “Cripple” is just too painful, no matter what. They feel that whatever benefit comes from calling yourself a “cripple,” with pride or a little smirk, isn’t worth the continued use of a nasty, insulting term.

This points to another, broader divide that will come up a lot in this Disability Alphabet series ... the gap between people who view language as concrete and neutral, with fixed meanings, and those who see language as constantly evolving and inherently political, as a legitimate tool for social change. If you treat words as fixed and literal, then it doesn’t make sense for “cripple” to be anything but mean. But if you view language as a tool, then it can be quite tempting and exciting to use its negative power for a contradictory and more positive good.

Another problem with “cripple” and “crip” as a term of pride for disability culture is that it doesn’t seem to cover the whole, diverse disability community, even though the way people use it increasingly suggests that we want very much for the word to be inclusive. Deaf people are in some sense disabled, but can they call themselves “crips?” How about blind people, autistic people,or people with intellectual disabilities? Again, if you view words as evolving, then “cripple” and “crip” might well be a term we can all embrace. If not, its more specific reference to physical disabilities may limit the ways it can be used.

Suggestions

I think “reclaiming “ words can work as intended, but it doesn’t always work well enough to be useful. So I would approach using “cripple” or “crip,” for any reason with caution and care, even if you yourself are disabled. And I think when you do, it’s a good idea to explain why you use the term, what you mean by it, and how your using it fits into the historical context of the word.

That’s what Alice Wong, Gregg Beratan and I did when we chose #CripTheVote to represent the Twitter conversation we started about disability in politics back in 2016. After using the hashtag for awhile and fielding some occasionally pointed questions about it, we posted an explainer. It still sums up how I, personally, feel about what “cripple” and “crip” mean to me as a disabled person: #CripTheVote: Notes On Crip.

Next post: D Is For …

Previous Disability Alphabet post: B Is For …

The Disability Alphabet: B Is For ...

Disability Thinking: The Disability Alphabet

This is only the second entry in this series and already I’m worried the whole thing is too dull and pedantic. Mapping out the definitions of words and adding my own opinions on what exactly they mean and how they are used? It’s not very entertaining or even particularly uplifting is it?

I’m going to keep at it anyway.

My goal is that by the end of this series, a curious newcomer to disability issues and thought will be able to go through this “Disability Alphabet” and gain a basic knowledge and some insight into the issues we struggle with in the disability community. In short, I hope this will be useful to people. That’s about all. Some weeks, the words will be interesting and spark some real thinking and discussion. Others, like this week, they will be pretty straightforward,

B is for … with picture of a “B” Scrabble tile

Barriers

Definitions

Dictionary.com:

  1. anything built or serving to bar passage, as a railing, fence, or the like

  2. any natural bar or obstacle

  3. anything that restrains or obstructs progress, access, etc.

  4. a limit or boundary of any kind

Wikipedia:

“A barrier or barricade is a physical structure which blocks or impedes something.”

Common Uses

In the disability context, “Barriers” functions as a replacement for “problems” or “struggles” ... the things that make disabled live difficult or unpleasant. But it places those problems outside the disabled person. It’s not the disability we are referring to, or personal weaknesses. A barrier is a thing over there that is in our way.

Problems and Misunderstandings

I’m not aware of any confusion over the word “Barriers.” It seems like a very effective word that immediately conveys the idea it’s meant to communicate.

Suggestions

“Barriers” aren’t only physical impediments. Ableism is a “Barrier” too, especially when it influences people’s ideas and actions. Disability discrimination is a “Barrier.” So are harmful laws and practices. And of course beliefs and social habits of people we meet can be “Barriers” if they negatively affect how we feel about ourselves, or poison our everyday social interactions.

“Barriers” is one of my favorite disability words It encompasses so much about the disability experience, and in a very particular and deliberate way. We can’t talk properly about disability without it.

Benefits

Definitions

Dictionary.com:

  1. something that is advantageous or good; an advantage

  2. a payment or gift, as one made to help someone or given by an employer, an insurance company, or a public agency

Wikipedia:

“Benefit (social welfare), provided by a social welfare program.”

“Health benefits (insurance), insurance against medical expenses.”

Common Uses

For most disabled people, “Benefits” typically refers to some combination of government-funded financial supports for either specialized medical or disability-related services, or regular income support for everyday expenses. In the USA, most disabled people deal with a confusing patchwork of generic and disability-specific “Benefits” that we both depend on for independence, and at the same time find ourselves limited by because of their often outdated eligibility requirements. Some of us are desperate to obtain benefits, while others of us can’t wait to get off them. Most of us exist somewhere in between.

Problems and Misunderstandings

Meanwhile, relatively few non-disabled people have anything close to a clear understanding of what “Benefits” mean for disabled people. Some assume that we are all just automatically eligible for generous “Benefits,” and don’t really have any major financial needs. Others look at benefits as meager and pitiable, and possibly shameful.. Their judgment of disabled people is negative because they view the “Benefits” they assume we all get negatively. Some people’s attitudes towards “Benefits” hinge entirely on whether they are perceived as having been “earned,” (like Social Security,) or simply granted as a kind of “welfare,” like Medicaid or Food Stamps.

There is also the perception in certain policy and ideological circles that our “Benefits,” often dubbed “entitlements,” are incredibly expensive and economically unsustainable for society in the long term. And alongside this, there’s usually a suspicion … sometimes an obsession … with the idea of benefits fraud, of people somehow faking or exaggerating their disabilities in order to cheat “the system.”

Clearly, “Benefits” means different things to different people. And the way people talk about “Benefits” says quite a lot about how they view disability and disabled people.

Suggestions

I don’t think the term itself is particularly misused, However, I do wonder whether there isn’t a better term for the systems that help us achieve and maintain independent lives, Maybe “Supports” is a better term?

Next post: C Is For …

Previous Disability Alphabet post: A Is For …

Disability Blogger Linkup - January 2019

Disability Thinking: Disability Blogger Linkup

Welcome to the monthly Disability Blogger Linkup! If you are new to this, click here to see previous linkups.

The idea is to share something you have written that's about disability in some way. Please be sure to link to the specific article or post, not just the main page of the website it's on. Also, to make the links easier for visitors to identify, in the “Your name” blank, type the title of the article you are posting. In the "Your URL" blank, paste the URL address of the item. Like this:

Screen shot of Mister Linkey’s entry form with Your Name and Your URL spaces circled in red. The Your Name blank is filled by “Title of the piece you are sharing. The Your URL blank is filled by “http://www.publicationname.com/article,html”

Then click the "Enter" button.

Closeup of a grey computer keyboard with a red wheelchair symbol on the center key

Please don’t post pieces that are basically advertising or endorsing a product or service for sale. There’s nothing wrong with promoting a specific product or service, but that’s not what this writing share is for. Also, please share a single specific piece of writing, not a whole website or blog.

This linkup will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, February 8, 2019.

That's it! If you have any trouble making it work, or have any questions, feel free to email me at: apulrang@icloud.com.

New Year's Resolutions for 2019

New Year’s Resolution written in white chalk on a blackboard, with three colored post-it's below

Making New Year’s Resolutions is usually a tiresome cliché, but this year I have some anyway. Specifically, I have three New Year’s Resolutions that relate to how I want to live in 2019 as a disabled person.

Resolution 1: I resolve to use less disability jargon, and explain it when I do use it.

Disability culture and politics often seems fueled and even defined by unique and highly specialized words. For example: ableism, inspiration porn, institutional bias, intersectionality, eugenics, erasure, emotional labor, or identity first vs. person first language. All of these terms serve useful purposes, giving voice to experiences and ideas that disabled people share but often have a hard time describing to others. Other groups and cultures have their own “insider” language too, but the disability community in particular seems to rely on words and phrases not only to express our ideas about disability, but to actually shape them.

Unfortunately, this can make disability culture and communication seem intimidating and closed to outsiders and newcomers. That includes many people who actually have disabilities but don’t organize their lives and identities around disability culture and activism. And this can lead not only to an exclusiveness that’s the opposite of our community’s supposed value of inclusion, but also a remoteness that makes important ideas about disability literally inaccessible.

That’s why in the new year I will try to use more familiar, accessible language to explain disability concepts and describe disability experiences. Some disability terms are important in themselves, and can’t be improved on, like “ableism.” But when I use them I will at least try to take the time to explain them. I’m also starting a year-long blog series on disability terminology, called The Disability Alphabet.

Resolution 2: I resolve to reevaluate my relationship with social media.

Don’t get the wrong idea. I’m not going to delete my Facebook account or stop tweeting. I’m not going to stop watching YouTube videos. And I’m not going to start preaching the virtues of “limiting my screen time.”

I’m old enough to remember when it was common for “smart” people to boast that they didn’t watch TV, or even own a TV set. It feels like there’s a trend growing in that sort of direction with social media. It’s becoming fashionable to abstain, and subtly look down on people who use social media. The thing is, for a long time TV really was mostly crap. And at the moment, social media seems to be full of crap, too. But Social media platforms are also vital links and communication tools, especially for disabled people. And like TV, we can choose what to pay attention to and what to ignore.

So what do I mean by “reevaluating” how I use social media?

First of all, I won’t be so quick to dismiss reports about what these services do behind the scenes. And I want to be more aware of how the algorithms that determine what we see, hear, and read can affect how we think.

I also want to reach beyond my own “friend” and “follow” lists to people and publications that approach disability differently than I do. I want to look for interesting disabled people who are not activists, who are just starting out on their journey, or who are still grappling with what, if anything, their disabilities mean to them. I’ll never support disability approaches I completely disagree with … like sheltered workshops and segregated “residential’ programs. And I don’t think I’ll ever like gooey “inspiration porn.” But I will try harder to understand where people are coming from and why they may talk about disability with different priorities, perspectives, and tastes than I do.

Resolution 3: I resolve to speak to more people about disability issues.

Sometimes it seems like I have two personalities when it comes to talking about disability. Online, I’m an extrovert. In person, I’m a shy introvert. I can be nervous, almost embarrassed to talk in person about disability issues even with people I know and love very well. I want to be bolder, more willing to talk to people in my “real” life about disability experiences and issues.

As I’ve already indicated, I also want to connect more with people who are disabled, but aren’t engaged very much in disability issues, culture, or activism … people who don’t already tweet, comment, and blog every day about disability. I’m talking about proactively bringing up political and cultural issues about disability that I think are important to discuss, with people outside the safe and comfortable “disability bubble” I tend to inhabit.

A good test for this will be my 30th college reunion this summer. Will I be able to explain my disability writing, nonprofit work, and activism in a way my old classmates will understand? Will I be able to do it briefly, simply, without rambling or trying to explain too much?

By the way, when I say I want to talk to more people about disability, I don’t mean being more generous with intrusive questions from strangers. While I have a pretty high tolerance for answering questions like, “What’s the matter with you?” and “How do you drive?”, I don’t plan on opening myself up more to strangers’ morbid curiosity. That’s one kind of emotional labor I don’t need more of in 2019. (Emotional labor is the kind of social interaction work that over time takes an emotional toll. See? I explained it!)

What are your resolutions for 2019? Or, do you stay away from resolutions entirely? Feel free to share and comment below!

Monthly Reading List - December 2018

Disability Thinking - Monthly Reading List

Each month I select and share five disability-related articles I read the previous month. Here are the five from December 2018:

American Nightmare: How workers with disabilities are denied economic prosperity
Mark Riccobono, The Hill - November 30, 2018

This is an unusually good explanation of subminimum wage, the original rationale for it, and why it’s long past time for it to end.

Stop Asking Disabled People, “What Happened To You?”
Jessica Gimeno, Fashionably Ill - December 6, 2018

Intrusive personal questions from strangers is one of the most common everyday annoyances of having disabilities. It’s far from the worst kind of ableism, but it really does get you down. This article explains why, and offers helpful suggestions on how to engage with disabled people more appropriately.

Picture of a stack of newspapers

Speech at ASAN Gala 2018
Julia Bascom, Executive Director, Autistic Self Advocacy Network - December 10, 2018

Julia Bascom offers an exceptionally clear and comprehensive overview of the current state of disability rights in the United States. She also gives a powerful defense of the importance of inclusion and disability rights principles for people with developmental disabilities.

Disability insurance: A crisis ends, but problems persist
Henry J. Aaron, Brookings - December 12, 2018

This article offers some encouraging news about the Social Security Disability “crisis,” while noting that reform is still needed. What’s missing, however, is any ideas from the people who actually use SSDI, the disability community itself.

DVP Interview: Judith Heumann and Alice Wong
Alice Wong, Disability Visibility Project - December 13, 2018

One of the pioneers of disability rights and independent living in the U.S. shares a little of her background and perspective on her life and what’s important for people with disabilities in general.

The Disability Alphabet: A Is For ...

Disability Thinking - The Disability Alphabet

This is the first installment of a blog series that should run from now until the end of 2019. It’s called “The Disability Alphabet.” Twice a month, I will examine important words used in the disability community, in alphabetical order starting with A, and continuing through Z. But first, a few procedural notes:

  • I will be using a four-part structure to explore each term: Definitions, Common Uses, Problems & Misunderstandings, and Suggestions. The last will be my own thoughts on how we can best use the term, including any suggestions for changing how and when we use it.

  • This is an exploration of words, which is not quite the same thing as the things themselves. So for instance, I will explore the word “ableism,” but I won’t discuss at length what ableism means to me, what it does to people in society, or why it’s important.

  • I will try for the most part to take on terms that have special meaning and uses within the disability community. While words like “justice,” “health,” and “freedom” certainly have particular meanings for disabled people, they are a little too generic for this project. On the other hand, I may examine some general social justice terms, like “intersectionality” and “oppression,” becaus they are frequently misunderstood, and because they are used in specific ways in disability discourse.

  • These are going to be my personal explorations, based on my own limited research, but mainly my own experiences, ideas, and feelings. I will probably not cover every possible aspect of every word.

  • Feel free to add your own ideas, or disagreements, in the comments below.

And so we begin with …

A is for …

Ableism

Definitions

Dictionary.com: “noun 1. discrimination against disabled people.”

Wikipedia: “ … discrimination and social prejudice against people with disabilities. Ableism characterizes persons as defined by their disabilities and as inferior to the non-disabled. On this basis, people are assigned or denied certain perceived abilities, skills, or character orientations.”

Common Uses

The most obvious use of the word “ableism” is to give a name to a broad range of discriminatory experiences people with all kinds of disabilities share to some degree. But the word has other, more specific functions too:

  • It distinguishes the disability experience from the more generic experience of “discrimination” or “prejudice” that can be applied to anyone, including non-disabled people.

  • It suggests some connection or similarity with other forms of discrimination that people may be more familiar with, such as racism.

  • By giving disability discrimination a distinct name, the word “ableism” takes the experience out of the category of mere misunderstanding and social rudeness, and places it more firmly in the category of damaging and urgent social ills.

Problems and Misunderstandings

At times, “ableism” is too general a word. There are too many different kinds of ableism. Each kind is serious, but often calls for different responses. Referring to such a wide range of experiences simply as “ableism” tends to over-simplify the way we think about it and deal with it.

I have tried a few times on this blog to map out the different kinds of ableism I have noticed. There’s a good summary of my thoughts here: Disputing “Ableism”. Roughly speaking, I tend to think in terms of three main kinds of ableism:

  • Well-meaning ableism

  • Systemic ableism

  • Asshole ableism

Your mileage, of course, may vary.

I think it’s also useful to separate “systemic” ableism … the ableism embedded and laws, policies, and practices … from interpersonal ableism … which is about the way people treat each other personally in regard to disability.

Another slight problem with “ableism” is that there are still people who hear the word and immediately think it’s “made up” for “political purposes.” I think what they mean is that they believe the term was coined with a specific rhetorical goal in mind. That’s probably true! But the same is true of a lot of words that are far more common and universally accepted than “ableism.”

In this run through the disability alphabet, I think we will find that people have fundamentally different beliefs about language that are distinct and separate from their political views. People seem to be hard wired one way or another. They either view language as an flexible and adaptable tool of communication and persuasion, or they cling to words as guardians of unchanging reality. And how people think about language affects how open they are to new words and new uses of language … something that has been essential in the evolution of disability culture and thought.

Finally, the way “ableism” borrows so directly on the meanings and rhetorical power of “racism” is, (to use another word we’ll need to explore at some point), problematic. Comparisons between ableism and racism do violence to the real-life experience of racism, and in any case the similarities are pretty limited. Both are systems of prejudice, but the similarities end there. On the other hand, “ableism” now has almost enough life and meaning of its own to stand alone, without needing to draw on that connection with racism or any other “ism.”

[Additional note: Squarespace underlines every time I type “ableism,” indicating that it doesn’t recognize it as a word. It may not be a new word to disabled people or the disability community, but it’s apparently new enough to be marked as a misspelling].

Suggestions

Despite all of the difficulties of “ableism,” there’s no better word available to describe and categorize the experience of disability discrimination and structural oppression. I use it. Still, whenever possible, I modify it, clarifying which kind of ableism I am talking talking about in any given situation.

Also, I try to use the word “ableism” describe, not to de-legitimize or shame. Calling someone or something “ableist” does not, to me, write them off. It’s not even a condemnation to me. At most it’s a criticism, more often an observation. I’m not suggesting shying away from the potential power of the word as a way to call out reprehensible behavior. I am suggesting that using the word with a bit of thought and nuance can make it more powerful and useful in the long run.

Advocacy

Definitions

Dictionary.com: “noun 1. the act of pleading for, supporting, or recommending; active espousal.”

Wikipedia: “Advocacy is an activity by an individual or group which aims to influence decisions within political, economic, and social systems and institutions. Advocacy can include many activities that a person or organization undertakes including media campaigns, public speaking, commissioning and publishing research or conducting exit poll or the filing of an amicus brief. Lobbying (often by lobby groups) is a form of advocacy where a direct approach is made to legislators on an issue which plays a significant role in modern politics.[1] Research has started to address how advocacy groups in the United States[2] and Canada[3] are using social media to facilitate civic engagement and collective action.”

Common Uses

In the world of disability, advocacy generally refers to any effort by an individual or a group to get something they want from some kind of institution … from a service agency, government office, employer, company, cultural institution, etc. When people with disabilities speak for themselves in order to get something they need or bring about some kind of change, we call it advocacy.

Problems and Misunderstandings

Like “ableism,” “advocacy” probably covers too many different activities. In current use the term encompasses both individual efforts aimed at personal gains, and group efforts to achieve broader systemic change. It covers asking your employer for extra time off or a raised desk. It also covers campaigning for health care reform and fighting attacks on the Americans with Disabilities Act. While all of these are related, they are also, obviously, quite different.

The term “advocacy” has also gradually become institutionalized. It is now sometimes used cynically to give the appearance of empowering disabled people, when in fact some activities labeled “advocacy” are really just dressed-up counseling or socializing. It’s a little too easy for an organization to say it does “advocacy” without really doing any.

Suggestions

I think we should start talking and writing about two related but separate things: advocacy and activism.

Activism

Definitions

Dictionary.com: “noun 1. the doctrine or practice of vigorous action or involvement as a means of achieving political or other goals, sometimes by demonstrations, protests, etc.”

Wikipedia: “Activism consists of efforts to promote, impede, direct, or intervene in social, political, economic, or environmental reform with the desire to make changes in society. Forms of activism range from writing letters to newspapers, petitioning elected officials, running or contributing to a political campaign, preferential patronage (or boycott) of businesses, and demonstrative forms of activism like rallies, street marches, strikes, sit-ins, or hunger strikes.”

Common Uses

“Activism” generally refers to organized, group activities aimed at making some kind of legal or social change. It includes everything from lobbying, letter-writing, and other “within the system” efforts to demonstrations, protests, and civil disobedience.

It seems like “activism” hasn’t been used as much in the past to describe these activities done by people with disabilities focusing on disability issues. “Advocacy” and sometimes “systems advocacy” has been the more common term. I don’t know why. Maybe because until fairly recently, most disability activism has been either run or heavily influenced by people and organizations that spoke the language of social work rather than politics. Maybe “advocacy” is a more comfortable linguistic fit for people who are unfamiliar or uncomfortable with politics.

But lately it seems like “activism” is being used more often by people in the disability community. After years struggling to find a word for the thing we do when we cooperate as a group to bring about social change for disabled people, it seems like we’ve finally started to realize that “activism” describes it quite well and quite simply. We don’t need to make up a special word for it. The right word has been there all along.

Problems and Misunderstandings

I don’t really see any problem with using the word “activism” in the disability context. I haven’t heard anyone complain that it mislabels what they are doing. Nor have I heard anyone assert that “advocacy” is a better term.

The only possible drawback to “activism” is that it might turn people off if they have a strong aversion to any kind of social or political activity. There certainly are lots of people in the disability community who don’t enjoy or appreciate “activism.” Yet, I’ve never noticed any aversion to the word itself.

Suggestions

So how about it? Let’s use “advocacy” when we talk about individual efforts, and “activism” when we talk about working together on broader goals. Who’s with me?

Next in The Disability Alphabet: B is for … Barrers and Benefits.

Starting Again

Yellow post-it note reading “Back Soon!”

Starting in January, 2019, Disability Thinking will return with a new format and a new look. The new look you can see right now. It’s mostly a cosmetic makeover, but it’s also a simplification. I deleted the Podcast and Links pages. I haven’t done the audio podcast for a couple of years, and I don’t intend to go back to it anytime soon. Plus, the links page is too much hassle to keep up to date. For the time being, Disability Thinking is going to be all about the Blog.

I’m not going back to daily or even weekly blogging. I’ve also decided not to attempt a YouTube vlog. Instead I’m going to focus on three blogging projects.

First, I’m going to take the Vlogging idea I was toying with and make it a biweekly blog entry. I’m calling it The Disability Alphabet. The idea is to explore the meanings and uses of disability terminology, starting with A and covering a new letter every other week until Z, which should come at just about the end of 2019. Here is the tentative, incomplete list of terms I have in mind:

A Ableism, Accessibility, Advocacy

B Barrier-Free

C Crip, Chronic Pain, Chronic Illness

D Disabled, Differently-Abled, Discrimination

E Erasure, Eugenics, Emotional Labor

F Functioning Labels

G Guide Dog

H Handicapped

I Inspiration Porn, Independent Living, Intersectional

J _________________________

K _________________________

L Long Term Care

M Medical Model, Marginalized

N Neurodiversity

O Oppression, Opioids, Outcomes

P Prejudice, Privilege

Q Quad Rugby

R Representation

S Self Advocate, Social Model, Special Needs

T Transition, Transportation, Trauma

U Undue Burden, Universal Design

V Vocational Rehabilitation, Venn Diagrams

W Wheelchairs, White Cane

X Xenophobia

Y _________________________

Z _________________________

Feel free to help me fill in the gaps and suggest other terms I should cover.

The other two features are continuations of existing features at Disability Thinking … the Monthly Reading List and Disability Blogger Linkup. And of course I will probably put up some stand-alone posts now and then, for notable events or when I just have to say something that I can’t cover properly in tweets.

At this point, I plan on the monthly blogging schedule looking like this:

  • The Disability Alphabet … Every other Friday.

  • Monthly Reading List … First Monday of each month.

  • Disability Blogger Linkup … Second weekend of each month.

That’s about all for now. Expect the first “Disability Alphabet” post on January 4, 2019.