"Languaging Disability: Where do 'Ability' and 'Dis/Ability' Fit In?"
As a writer with a disability, I read a lot of writing about disability, discussions of language about disability, and the like. There are noticeable differences in language usage around disability depending on geography, disability status and type, and community. This has led me to some conclusions about who uses which language and why.
Before I discuss these differences, I want to stress that I am aware that these conclusions are generalizations. I know there is wide variation within the groups I'm referring to which goes beyond a few exceptions. Nonetheless, I've been active in the disability rights community and have been writing (fiction, poetry, and most often, nonfiction) professionally about disability since 1992, so I think I have a pretty good grasp of the broader implications.
The first four short sections (below) cover material most have some familiarity with. However, recent reading has alerted me to the fact that many people who are trying to be disability allies are not as aware of disability rights perspectives on the less obvious words. Thus, I've decided to provide an overview of some of the more widely understood issues before getting into the newer ideas.
Euphemisms and Other "Don't Go There" Words
Do not use these terms. Some have horrible histories. Most were created by nondisabled people, and I almost never hear a disabled person using them (except with loathing).
On the saccharine, ridiculous, and skin-crawlingly euphemistic side we have the following:
-physically challenged (or mentally challenged or any form of "challenged")
-special needs or "special" in general
On the outdated, mean, or "hipster" hit list of words I hate, please find:
-the R-word or any of its incarnations
-lame (as in "That's totally lame" or "He's so lame, dude")
-any of the zillion offensive terms used to refer to people with mental health disabilities (crazy, nuts, bonkers, etc.)
Also, please don't use "the disabled," as if we are some monolithic entity that shares a hive mind. I usually see "the disabled" as part of a list that refers to "children, the elderly, and the disabled." In other words, people who need to be cared for, and thus, not really people in our own right so much as recipients of others' attention or sources of employment. Do you generally refer to gay people as "the gays" or "the homosexuals," to Jewish people as "the Jews," or to people of African descent as "the blacks"? I hope not! If you're not comfortable with "the gays" or "the blacks," please don't use similar language about people with disabilities (PWDs).
PWD versus Disabled Person/People
I'm not going to get into this one. Scads of articles and blog posts have already been written about it. Basically, the generally preferred language in the US is "person/people with (a) disability" (referred to as "person-first language") and in most other countries it is "disabled person/people." However, there are people in and out of the US who disagree with "the party line" and prefer the other. I am fine with either one. They both have merit, and sometimes one or the other works better depending on the situation. (For more on this topic, check out this style guide by the National Center on Disability and Journalism.)
Cultures within Communities
There are some exceptions to the PWD/disabled person guidelines in the paragraph above. There are certain communities of people who prefer different language. Deaf people are an example. People who are deaf or hard of hearing who use American Sign Language (ASL) and identify as being members of the Deaf community usually do not identify as having a disability. They also use a capital "D" for "Deaf," and "Deaf" refers to anyone with hearing loss who is part of Deaf culture.
Autistics are another example. There is a movement among Autistics to be recognized as a community of people with unique and valuable attributes, not as children who need curing. They use the term "Autistics" (with a capital "A") instead of "people with autism" to indicate their community identity and to show their separateness from families of people with autism or other people concerned with autism who are not Autistic.
There is also, within virtually every disability subgroup, language that is mostly used "in-house." As a person with Lyme disease and multiple chemical sensitivity, I often refer to myself and others with these illnesses as "Lymies" or "MCSers." I have seen people refer to themselves when addressing others with their same disability as Deafies, blindies, crips, gimps, quads, paras, and crazies. This does not mean that people outside of these groups should use this language! In many of these cases, they/we are reclaiming terms that have been used to hurt them/us or they/we are using these words fondly within their/our subculture. Unless you have the disability being referred to, don't use these words. Go with "person/people with [proper name of disability]" instead.
Whaddaya Call Normal People?
First, please don't use "normal" to refer to people without disabilities. That implies that PWDs are abnormal, which is a perception we're trying to change. Having a disability is as much a part of the human experience as anything else. It is normal to have a disability!
I'm sure some of you are thinking or have read "able-bodied/AB" or "TAB" (temporarily able-bodied). The problem with "AB" is that it indicates that all disabilities are the result of physical impairments, such as mobility issues. However, there are a multitude of disabilities that don't fall into this category. Mental health disabilities, cognitive disabilities, and autism are examples of disabilities that do not necessarily have anything to do able-bodiedness.
TAB seems cool, but it's actually problematic. It's based on the belief that everyone will develop some disabilities in old age. Some people use TAB to try to raise awareness that disability is a normal part of life and something that can happen to anyone. I definitely support the goal of non-otherizing PWDs. After all, I lived my first twenty-odd years without disabilities, and now I have multiple disabilities.
However, the fact of the matter is that not everyone does develop a disability. Some people never reach adulthood, let alone old age. You can be perfectly healthy and nondisabled until you die in a car accident or of a heart attack. My grandmother was much healthier and more active at 82 than I was at 28.
In addition, I've seen people use TAB to dismiss the validity and uniquely different perspectives and experiences that come from living with disability. It's much like saying, "Well, I have glasses, so I'm disabled, too," or saying to a lesbian or gay person, "Well, everyone's bisexual," to negate the reality that living as a queer person in our culture is different than living within normative sexual/familial culture.
So, what's the answer to what to call nondisabled people – i.e., people without disabilities? It's in the question! It's "person/people without (a) disability/ies" OR "nondisabled person/people"! What could be simpler?
One Mongoose, Two . . . Mongeese?*
The assertions I've made up till now are pretty widespread. You can find lots of blog posts, articles, books, and papers that agree with me. What I haven't seen much discussion about is the question, "What is the category name for disability/nondisability?" Although I get irritated when I come across people using terms I don't like for this, I've only recently decided I must write a post explaining my position.
The impetus was an active discussion on Twitter, started by author Kate Bornstein when she was crowdsourcing for her next book, My New Gender Workbook. She asked on more than one occasion what term to use to refer to the state of having or not having a disability. In other words, when talking about oppression, we often refer to issues of "race, class, gender, sexual orientation, and religion." Any of these words work to talk about both people who are in the marginalized position and those in the privileged position. For example, one of Kate's tweets said something like "Race is to racism as ___ is to ableism." (Omigod! It was like taking the SATs all over again!)
Most people said "ability." I strongly disagree with this, even though it seems to be most people's default. For instance, I googled "race socioeconomic gender sex ability" and got lots of hits for "diversity" policies or studies, or antidiscrimination policies. Here are some examples:
-These include but are not limited to age, ethnicity, socioeconomic status, gender, physical and cognitive abilities/qualities, race, sexual orientation, gender ...
-These can be along the dimensions of race, ethnicity, gender, sexual orientation, socio-economic status, age, physical abilities, religious beliefs, political beliefs, ...
-In terms of race, ethnicity, culture, socioeconomic status, gender, sexual orientation, abilities, ...
I don't think there's been enough thought or discussion about this, both inside and outside the disability community. It seems like people are using what's handy or conventional, without much actual familiarity with disability or what it means to classify disability status under "ability."
On the other end of the spectrum are people involved in disability studies who tend to give words and their meanings a lot of thought. Some of them use the terms "dis/ability" or "dis/Ability" or "(dis)ability," and I find this problematic, too. I did find, in the Google search above, one example of this (below), followed by further examples from disability studies texts:
-all people, regardless of race, gender, sexual orientation, class, (dis)ability, language, or religion, ...
-"...dis/abled people all face the threats of an increasingly punitive and governing ableist society." (Dan Goodley, Foreward Contours of Ableism, xii)
-The Unveiling of (Dis)ability: Essays on Silence, Voice & Imprints by Fiona Kumari Campbell's
My preferred term to use in laundry lists of -isms is "disability," or where it is necessary to distinguish between disabled and nondisabled, "disability status." I will explain why after I explain why I don't think "ability" or "dis/ability" work well in many of the situations in which they're used.
I don't know the people who replied to Kate's query, so I don't know their disability status. (I'm assuming both disabled and nondisabled people replied). However, my experience is that the general public, particularly nondisabled people or disabled people who are not heavily involved in disability rights work, are more likely to use "ability" to mean "the category of having or not having a disability" than people involved in disability rights activism.
Why is using "ability" this way problematic? The first reason is that it's inaccurate and misleading because whether or not one is disabled doesn't actually have much to do with one's abilities. I know that the letters "a-b-i-l-i-t-y" are contained in the word "disability," but the etymology of the word and its meaning as a social construct are not the same thing.**
For example, I have loads of disabilities. How I identify them or myself as disabled depends on the circumstances. I could say that my disabilities are MCS, myalgic encephalomyelitis (ME), and Lyme disease, but this doesn't tell you my "abilities" at all, does it? It tells you my diagnoses, and it might tell you something about my limitations and symptoms, if you are very familiar with these diseases (which is unlikely unless you are severely disabled by these diseases, too). However, even this is limited information because, like most chronic illnesses, mine occur on a spectrum and affect me differently than they affect others with these illnesses.
I could get more specific about "abilities" in identifying myself as "disabled." I could say, "My disabilities cause chronic pain, exhaustion, limited mobility, cognitive impairment, sleep disturbance, and intermittent speech impairment." That would give you some hint that my "abilities" to speak or ambulate or sleep are not typical, right? However, it doesn't really provide any detail. It doesn't give you a true sense of how these issues affect me, how they wax and wane, or how I live my life to accommodate them. Much more importantly, what I'm talking about here is not in the realm of what I call abilities at all. They're what I would call "symptoms" or "functionality" or "limitations."
When someone asks you what your abilities are -- for instance, in applying for a job -- do you list "going to the toilet unaided"? Do you list falling asleep with ease, or seeing, walking, or speaking? I sure hope not, because if you think you need to list such things, your potential employer seems likely to be discriminating on the basis of disability.
If I am having trouble moving my legs, to me that is not about my "abilities"; it is about my functionality, symptoms, or limitations on that given day. I may have limited ambulatory function, but that doesn't mean that I can't run my dog for a mile, because I can -- using my power wheelchair. Function varies a great deal not only between people with different disabilities, but also between people with the same disabilities, and quite often day to day (or minute-to-minute). For example, many people with disabilities have totally functional legs (or lungs, hearts, eyes, or brains) and many have less-than-totally functional legs (or lungs, hearts, eyes, or brains). Among those with functional limitations, some have static levels of function or lack of function, but many have variations in functionality. Sometimes I can move my legs with great difficulty, sometimes with ease, and sometimes not at all. My functionality on this front varies. The same is true of my standing, walking, sitting up, speaking, reading, brushing my teeth, and on and on.
In general, when you speak of someone's abilities -- yours or another's -- you are talking about their skills, accomplishments, natural talent, or knowledge set. One of my abilities is proofreading. I can take a document that someone else wrote and fix the errors in spelling, punctuation, and grammar. I have this ability because I learned the basics of proper English spelling, grammar, and punctuation in school and then was taught proofreading by a mentor when I had a job that required this skill. I have maintained this ability by making use of references, such as dictionaries, thesauruses, and style manuals. If I suddenly lost the ability to proofread, would this make me disabled? Should we assume that anyone who publishes a blog post that is full of errors in grammar, punctuation, and spelling is disabled? (I'm working very hard to not make a snarky joke here.)
Some abilities come naturally (e.g., being naturally athletic or musical or "good with animals"), but to excel (as a runner or singer or horse trainer) one still has to supplement inclinations with learning. In addition to proofing, other abilities or talents I have include dog training, baking, swimming, applying makeup, and public speaking. The fact that I'm not physically or mentally able to do all of these things all the time or even most of the time does not necessarily mean that I can no longer say these are abilities of mine. For example, even if I can't swim at this time, I still have a memory of loving to be in the water, of a sense of ease and freedom of movement in the water that I never had with land sports. Being unable to exert myself in the water now and having a PICC line that can't get wet doesn't mean I've lost the ability to swim. I still remember how to swim freestyle and backstroke, how to do flip-turns.
My other objection to using "ability" to mean "disability status" is that it is a euphemism. I find euphemisms distasteful for several reasons. The first is that they support a subtle form of ableism, a tiptoeing-around-the-topic that suggests discomfort with talking about disability. It says, "I'm not sure if I should acknowledge disability as a real thing that is okay and normal to talk about, so I'm going to use this vaguer term so everyone can feel more comfortable about not naming 'disability.'" Not including "disability" in a direct and clear way usually results in PWDs shouldering the onus of awareness and inclusion.
Euphemisms are also, by definition, not quite honest. This is true of saying "ability" when you really mean "disability status." For instance, when people use "ability" in their laundry list of demographic insider/outsider groups, they don't mean "ability," they mean disabled or nondisabled. In general conversation, when people mention "ability," they are almost never talking about disability status.*** They really mean "what this person is good at." As in, "She has fabulous artistic ability," or "I have no ability to decorate a cake so that it resembles the picture in the recipe," or "That team's fielding ability is deplorable."
Can you imagine someone saying, "What's his ability?" And being answered, "Nondisabled"? It doesn't make sense!
Lastly, similar to other disability-related euphemisms, the use of "ability" to mean "disability status" carries condescending and marginalizing baggage. It's like someone referring to a PWD as "special" or having "special needs" when what they really wish to convey is "this person requires a ramp and a communication board to participate in this class." (Or sometimes what they really mean is "this person will take more time and energy than I think they are worth.")
Dis/Ability, DisAbility, and (Dis)Ability
The other terms I'm seeing used increasingly among academics are variations on "dis/ability" or "(dis)ability." Typically I see this type of usage among disability studies people. I attribute some of this to the postmodern love of deconstructing words, and using creative punctuation to highlight the (de)construction of language and meaning. (See? I can do it, too.) I have tried asking disability studies professors and doctoral students why they use these terms, but I mostly got a lot of very emphatic replies about why they don't like them and use other language instead. So, the best I can do is guess. (If you're a person who uses one of these types of constructions, please comment! I'd love to know if my guesses are accurate.)
One of my guesses is that these constructions serve different functions for different people. I know some disabled people who use "dis/Ability" and "disAbled" because they're trying to focus the reader's attention on the fact that people with disabilities are "able" -- in other words, not useless, incompetent, or inadequate, which are longstanding general beliefs about disability. Others seem to use (dis)ability or dis/ability to be inclusive of both those with and without disabilities without writing extra words, much as many feminists used to write "s/he" instead of writing "she or he" or "they," etc. The only disability studies professor who did reply to my query (although she doesn't use these constructions herself) said that she thinks the slash usage is "meant to indicate the inseparability of the concepts 'abled' and 'disabled.'"
There are several problems with these usages. One is that they're awkward and inaccessible. They're not likely to be adopted by the masses. But that's the least of my concerns.
Mostly, I don't like these usages because they carry the same problems as "ability"; any configuration of dis/ability or (dis)ability focuses on "ability" as a category that is meaningful to disability, which is false. As I asserted above, disability is not about ability or inability. Disability is a social construct. While I have a lot of life experience in common with people who have certain types of disabilities -- usually chronic illnesses that involve a lot of pain or fatigue, and isolation – the only thing I have in common with all disabled people is ableism. Becoming friends with a number of blind people and Deaf people has taught me this more than anything else. Most of my friends who are Deaf and/or blind have very little in common with me in terms of our day-to-day lives (except if we have assistance dogs, which is a mutual bonding point). Since ableism takes so many forms and is such a vast, integral part of every aspect of our society, we can still end up with a lot of shared experiences -- denials of access, condescension, discrimination, stereotyping, and on and on -- all of which is not about any functional impairment but about ableism. However, such experiences have nothing to do with what I'm actually able to do versus what they are able to do (which is generally a hell of a lot more than I can do).
I also really don't like to see "(dis)abled" used in reference to me. I am disabled. I have disabilities. The parenthetical "(dis)" seems to suggest that those of us with disabilities are also partly "abled" (i.e., nondisabled). And there is no part of me that is nondisabled because it is a part of my identity and life experience. Being disabled is as much a part of who I am as being a woman or an American or a lesbian or a Jewish person. None of these parts of me are all of who I am, being a disabled person is not all of who I am; but I can't leave that part of me behind as if it existed in another body any more than I could divorce myself from being human.
When I see dis/abled used about me, it feels like a lie. It's like "differently abled" or "handicapable" -- as if the writer is trying to take my reality away and make it into something palatable and hidden. I want to be respected and understood in my entirety and my complexity. That includes my disabilities -- the suffering they have caused me -- physically, emotionally, and socially -- as well as the insights I've gained and the mundane boringness of my life, which is like so many lives, regardless of disability.
In most cases where people are now using "ability" in reference to disability, they can simply use "disability." After all, who is turned away from a job, excluded from history, made fun of, prevented from entering a building, or denied communication access because they are not disabled? Certainly nondisabled people can wind up in such situations, but it's never because they don't have a disability. Thus, "ability" can easily be replaced with "disability" in all of those nondiscrimination or diversity clauses, e.g., "Nobody will be turned away due to race, gender, sexuality, religion, or disability." Period. It's really quite simple, folks.
For syntax sticklers, I have a second option. In cases where you really need to make clear that you are talking about any person or group of people, whether or not they have a disability, you can use "disability status." It's like saying "national origin" or "socioeconomic status." For example, I welcome your comments on this post, regardless of your disability status. I really do.
*This is a reference to a joke I grew up with. A European man is in the import/export business. He mostly deals in furnishings, but a valued customer says he will pay handsomely for two mongooses. The importer isn't used to requesting animals, but he doesn't want to lose this business. He also doesn't know what the plural of "mongoose" is; is it "mongeese"? "Mongooses?" So he wires his Asian contact: "Please send a mongoose. While you're at it, send another."
**Getting into the etymology and social constructs requires more research and space than I have for this piece. Hopefully, I can address those topics in a later piece.
***Yes, if you look up "ability" in the dictionary, it will include in its definition aspects that can relate to disability, but it also includes some aspects that I very much think should be divorced from disability. For example, here is the first set of definitions at Dictionary.com:
1. power or capacity to do or act physically, mentally, legally, morally, financially, etc.
2. competence in an activity or occupation because of one's skill, training, or other qualification: the ability to sing well.
3. Abilities, talents; special skills or aptitudes: Composing music is beyond his abilities.
This post is cross-posted on Sharon's writing blog, Bed, Body & Beyond.