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 …
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.”
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:
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].
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.
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. Research has started to address how advocacy groups in the United States and Canada are using social media to facilitate civic engagement and collective action.”
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.
I think we should start talking and writing about two related but separate things: advocacy and activism.
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.”
“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.
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.