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I’ve always had a problem with the phrase, “The Disabled.”
First of all, it’s essentially meaningless. What does it really tell you? Specifically?
Nothing, if you take a moment to think about it.
The people who could be said to fall under the category of “The Disabled” is immense; too immense to be contained in a single phrase. We’re asked to include people with such significant cognitive and physical impairments that they require 24/7 support, along with people like me — paralyzed, so clearly I have a disability, yet I’m professional, active, self-supporting, and as fully independent, if not more, as many people who can walk.
I’m by no means an isolated case. LOTS of people with disabilities reside on the active and vibrant end of the scale.
What’s the point of using a phrase that describes such a hugely broad spectrum of people? When you read it or hear it, what’s it supposed to mean? Who is the writer/speaker actually referring to? Towards what end? A phrase that is so broadly indefinable can’t communicate with clarity.
As the reader, you’re left to figure it out on your own, thrust into the risky business of inference. For me, as a writer, I don’t want you to have to fill in the spaces on your own. I want to be clear, and I want you to get what I mean.
Which is why you’ve never seen the phrase “The Disabled” in my writing — unless I’m commenting on the phrase itself, as I am now. And I’ve got plenty more to say about it!
When you hear or read “The Disabled” you’re unlikely to stop and think about what it’s supposed to mean in whatever context it’s being used. You’re going to unconsciously draw on the automatic meanings attached to it, the connotations, the stereotypes. Here’s what I think people get when they encounter the phrase.
They get a picture of a population who needs to be taken care of. “The Disabled” suggests a group of people who can’t fend for themselves. Every time I see or hear the phrase I feel the social stereotype deepened, steeled, reinforced that disability is a state of being that precludes independence and being self-supporting — much less being creative, productive, or great in bed, for that matter. The other end of the scale, the population where I reside who have no need to be taken care of, is completely missed.
“The Disabled” require, if not demand, money from the government for entitlement programs, and impose the cost of accessibility in our built environment. It’s one of the most common places we see the phrase, in news reports about government policy, about spending cuts in hard economic times i.e. “Programs for the disabled.” The implication is that people with disabilities represent a pure cost to the economy, give nothing back, and if the “Angry Cripple” stereotype is at play here, then we expect to be well fed while gnawing down hard on the hand doing the feeding. Again, I’m not included. I don’t get, much less demand, any government supports. (My health insurance doesn’t even cover any of the cost of a wheelchair for me.)
I imagine many people consider “the disabled” a burden on our society, yet accept (begrudgingly, perhaps) the social obligation to “do the right thing” by them. I imagine people assuming without much thought that the “right thing” represents some kind of compensation for the suffering of their impairments and limited, difficult lives.
The use of the phrase “The disabled” actually precludes the real conversation we critically need to have, namely that disability policy is not just about helping people who need it (and their families) meet basic needs. Wise disability policy invests in people with disabilities living as well and independently as possible, exactly so we’ll properly apportion money for the people who really do need caretaking.
I can tell you what got me worked up about this. It was Barack Obama’s second inauguration speech. It was a pretty good one on the whole, I thought, but he failed on the disability measure this time, having done not so badly in the past.
The only mention he made of disability was this: “For we remember the lessons of our past, when twilight years were spent in poverty, and parents of a child with a disability had nowhere to turn.” The only mention.
The implication is pretty clear, isn’t it? A child with a disability is a burden on a family, and they need outside support to ward off poverty or whatever other horror you’d care to imagine. Nothing in his statement even remotely implies that these children with a disability could grow up with self-esteem, explore their talents and interests, look forward to a future as an active, engaged person who functions in every milieu of our society and their community. No. They are “The Disabled.” They need to be taken care of by their parents — who therefore need to be taken care of by our government. By tax dollars right out of your pocket.
I’m asking you to respond very differently whenever you encounter the phrase “The Disabled.” Yes, as an ethical society we want to provide for people who truly cannot provide for themselves. How we treat that slice of our human family speaks volumes about the values that underlie our society.
But remember that “The Disabled” doesn’t begin to describe the growing and emerging population of people who happen to have disabilities who don’t collect entitlements, and are anything but a burden to their families. They are entirely worthy of our making an investment in the full and independent lives that we are all “entitled” to as members of a free, democratic society.
You should not let things like this get to you so much. It is a term that people feel is politically correct and broad enough to cover many people whose abilities are not the same, or impaired, for any number of reasons.
I do not believe this term will go away, even with protests from people that it may apply to. Therefore, being worked up or angry about it will only perhaps give you a stress ulcer or affect your health in some other unfortunate way.
This is an example of a thing we must rise above…
Thanks for the feedback, Jessie. Don’t worry. I won’t get an ulcer over it! I certainly don’t expect it to go away.
My piece is an effort to get people to respond a little differently when they encounter the phrase. So much connotation is built into words like that, and my hope is to make people aware of their gut reactions to it, and take an extra beat to remember that those gut reactions don’t necessarily serve the truth.
We’re certainly rising above it by increasingly demonstrating to society how much we as people with disabilities are true players in every milieu of everyday life.
What do I wish I’d known? Everything! My epilepsy was digneosad in the Netherlands, where I was living at the time. I was given no information at all, apart from hand in the driving licence and take meds. It was pre-Web, so I couldn’t do any research online and I had no access to info leaflets in English. When I returned to the UK close to 9 years ago, my new GP organised my free prescription card for me but beyond that I still wasn’t given any really useful info. No one told me I could apply for DLA, or get a Radar key, for example. I learned everything the hard way or by diligently researching on the now-quite-decent Web. My care team has always been first class in actually dealing with the epilepsy itself but not one of them gave me any useful or practical info on actually living with it. It’s one of the reasons I wrote my book Epilepsy the Essential Guide when the publisher approached me – I was very motivated to put all that hard-won knowledge somewhere others could access it all in one place. And even now I’m still finding out things – I’ve always told dentists I have epilepsy, just in case I have a seizure during treatment, but it was only two years ago when I registered with my current dentist that I found out that epilepsy meds can cause real problems with plaque build-up and the subsequent issues that causes. Why did no dentist tell me before that I need to be super-scrupulous about oral hygiene and ensure I see a dentist at least every 6 months?
Gary, thanks so much for raising the issue of language related to persons with disabilities. The power of language as a tool of labeling and stereotyping is too often over-looked or under appreciated. The term “The Disabled” is most often used to describe a “protected class” of people. While not intended to imply helpless and hopeless it does tend to reinforce this archaic imagery. As above, I prefer the people first model, that is people or more accurately persons with disabilities. I did notice however, that in your welcoming note and here again your website uses a font that is virtually invisible to persons who have limited sight. I enjoy receiving your newsletter, but urge you to provide sufficient contrast to make it available to all. Thanks.
Thanks, Bill. I appreciate the affirmation and the constructive feedback. Clearly, we all still have more to learn – even about the things we should know!
That said, sometimes Constant Contact does things of its own mind (or local browsers) over which I can’t seem to exert control. I’ll check it out, sharing your belief in the power of contrast. (Same goes for the formatting of my new speaking site, here. The menu colors up above are not what I prefer.)
I’m a strokie. Took me years to diecvosr that I could have some home adaptations, such as an extra stair rail, door and toilet rails, a bath board to sit under an over-the-bath shower, and get the shower moved central rather than end of the bath for free from the social services.Sort of free. They’re actually a loan until I ‘no longer need them’. Whenever that is ;)They won’t do everything I need, for instance, no rails on the back door steps because the one on the front enables me to reach the back garden, spending cuts and all that.But there was a one off assessment that took half an hour, a form to sign and within a couple of days a chap came around and fitted them.
Hi Gary,
This a very insightful piece. Thank you.
Jessie, I think your comment speaks to the way many people feel about the political correctness of the term is true enough. But please remember that one definition of the word, “political”, is “expedient”. I prefer to do (or say) the right thing and not the expedient thing. If you believe the term will go away my simple question to both of you is, “What will replace it”? What term will reflect people, who are currently described as, “being disabled”, are no different than, “abled” people who are productive and normal? It needs to be politely and accurately descriptive that clearly embraces the concepts Gary is addressing. Do both of you have any recommendations?
Michael, this is the holy grail of the disability community, and no one has yet to come up with a solution that really conveys an accurate sense of who people with disabilities are.
I think part of the solution is that the word “disability” itself needs to be imbued with a changed meaning. This has happened to a lot of words in our lexicon, “Gay” being one well-known example.
So when we go with the generally accepted “people first” language, then a person with a spinal cord injury, like me, will hopefully be understood as people who are highly capable of independence and very active, satisfying lives.
I’ve played with the idea that we should start using a completely new word, and imbue it with the meaning we want. One suggestion I’ve made is “MXYZPTLK.”
Anybody know what that’s from?
Thanks for pitching in, Michael.
I wish I’d listened ealeirr to advice from others with similar experiences. For example, there was the bipolar friend who told me to claim DLA and I was saying “but I’m not disabled”.I wish someone had told me how people would dump me when they discovered I was mentally ill and that someone had told me that there are a whole lot of new friends to be had out there.However, I am grateful for the advice of one friend and employer – “Don’t think sick, because when you think sick, you think ‘can’t do’; think disabled, because when you think disabled, you think ‘reasonable adjustments'”That’s not to knock anyone for whom sickness precludes them from doing anything, just that realising that a lot of it is about what other people will do to accommodate your needs can be liberating. I’m sure the same is the same for a lot of impairments that aren’t associated with any sort of illness/disease/disorder.
Gary, nice rant! Of particular interest to me is the stereotypical image of disability that the language associated with your examples of “The Disabled” creates within the general population. In particular, does this stereotype negatively impact all individuals with disabilities, many of whom are just trying to get on with things, find and keep employment, and live a fairly typical life?
Of course, it is difficult to avoid the “political correctness” issues that are engendered by a discussion of this sort. Specifically, are we in some way denigrating those individuals who live with disabilities and require financial or other assistance by pointing out that not all of us require these supports? Are we starting down a path that will result in a two-tiered understanding or definition of disability? Is this a good thing or will it ultimately be damaging? Perhaps this could be a topic for a future rant.
Hey, John. Hello to Whitehorse, Yukon Territory.
You raise a good point, and it’s a challenging question, similar to the problem of trying to get away from the medical model, but some people do need to be assessed in medical terms.
My hope is that people would pick up on my comment above that when we have a wise disability policy, then we use the money more efficiently and then are better able to provide support to the people who really need it.
By all means, gist for a future rant.
Say hi to all my friends up in the Land of the Midnight Sun. Great hearing from you.
I used to say that I wished there was some kind of cusroe one could attend in ‘how to live with illness & disability & what you need to know now’.I really needed help (and still could do with some), in how to understand (and explain to others) the impact of illness and disability on my life. Social services say: “what help do you need?” I don’t know, what help will help? My illness and disabilities are a complex mix that have a complex affect on my life. Social Services expect you to just know what kind of help will help you – but you don’t even know what they can offer, let alone whether this will improve life or make it more difficult. DWP want to know how your illness and disabilities affect different areas of life – I didn’t understand the level of detail they needed in order for them to understand the real impact of illness and disability on my daily life. I have to keep remembering that to them I am a complete stranger, so I need to explain clearly why a particular situation (that is fine for other people) makes my life worse because of my illness and disability. It takes a long time to understand (as a newly ill / disabled person), the full impact of illness & disability, and to understand how to do things better given the new restrictions, and what help will help.
I wish I’d known that becoming (obviously) dilsabed didnt mean I was less of a person.I wish I’d understood that my fears about using visible aids were stupid and disabling in themselves.I wish I’d had the courage to reject ‘help’ and advice that were actually making things harder for me.I wish somebody had been honest enough to tell me the truth about how this society *really* deals with people who have chronic illness/disabilitys. For example the facts that many people you thought of as friends will disappear,that the medical community have very little interest in helping you to have some quality of life,and that fighting for appropriate treatment/care will become your new norm. Had someone told me that the safety nets I’d blithely believed exist for people in need are a fantasy,that the ‘human rights’ people bang on about no longer applied to me,and that doctors dont always know best (or indeed know ‘anything’),instead of perpetuating the myths able-bodied people need to believe for their own peace of mind,my mental health wouldnt have suffered nearly as much as it has throughout this journey.And finally (because otherwise I’d go on all day!) I wish somebody had told me that not all disability aids have to be flipping beige, ugly and ‘medical looking’..For me it was the emotional/psychological side of things that I really needed help with at first. The first few ‘disability catalogues’/leaflets (full of old-people models) I was given ended up being thrown across the room because of my horror and denial that this was my world now. I’d never thought of myself as prejudiced against dilsabed people,I’d never been uncomfortable around obviously dilsabed people in everyday situations,but the presentation of disability I was given when my own body fell apart was repulsive to me. And I know from reading blogs and support sites that I’m not alone in that emotional struggle. So while knowing about things like Radar keys and VAT exemptions etc is important,its equally important to address the emotional impact of finding yourself in a situation where you need that information so that people can be empowered to use it instead of being scared to death of the alien world they’ve fallen into.On a slightly different note,I’ve recently written a ‘blog post’ about societys attitudes to wheelchairs versus all other forms of wheeled transport,and I’m looking for somewhere to ‘guest post’ it.(I dont have consistent enough energy/brainpower to have my own blog). Would you be interested if its up to scratch for your site?Lola
Thanks for writing this Ilsi. It’s very insightful and right on. It affirms my mission to shift the cultural messages and get everyone involved more committed to independence and respect. I’m sorry I don’t take guest blogs, but absolutely feel free to pitch in to the conversation anywhere on my sites. Here’s a video comment that is in line with this topic where you could also comment. https://vimeo.com/146819660 You’ll need to use the password “midatlantic”. All my best!
above – I wish I had known it was MS and that people had lintesed – I would also like to go back and slap myself and tell my before self to enjoy things more – as so easily and so fast things can change!I would also say dont always go to the didability places – a clock on partially signted website was 35+ on QVC the same size numbers was 19.99!I would tell myself to find people who are going to listen and who will not just tell me I am putting it on. People like the MS society to listen and who know what is making these things happen.We need to have people who will fight FOR us, and to understand that disabled doesnt mean underling or stupid!I would like to tell myself to not trust the govt, and to have saved money away for years beforehand as govts can turn you into a criminal overnight just for being disabled through somethign you didnt exactly sign up to
above – I wish I had known it was MS and that people had letnesid – I would also like to go back and slap myself and tell my before self to enjoy things more – as so easily and so fast things can change!I would also say dont always go to the didability places – a clock on partially signted website was 35+ on QVC the same size numbers was 19.99!I would tell myself to find people who are going to listen and who will not just tell me I am putting it on. People like the MS society to listen and who know what is making these things happen.We need to have people who will fight FOR us, and to understand that disabled doesnt mean underling or stupid!I would like to tell myself to not trust the govt, and to have saved money away for years beforehand as govts can turn you into a criminal overnight just for being disabled through somethign you didnt exactly sign up to
Hi Gary , thanks for your writing on this topic. Semantics has always been a big deal to me. That why I say PWD , rather than “disabled people.” I say that I have a disability , rather than I’m disabled. It is interesting that some self-advocates with autism , would rather be called “autistic ” rather than “a person with autism.” I can’t be sure b/c as a person with a PHYSICAL disability I haven’t been there, but my sense is that it has something to do with the fact that autism is part of that person’s entire being to the core , as a whole. Many in the autism community would rather stress inclusion rather something that needs to be fixed or to overcome. One day I saw an interview with an author who had written on certain aspects of our society & culture. I wasn’t expecting to hear anything about PWD , but it blew me away when the author mentioned term “contempt for cripples.” It was like , “Oh , that’s it , it’s a “contempt thing.” Except ,I would expand it further to say that it is a “covert cotempt for cripples.” People without disabilities are too polite , & often don’t even realize it when their thoughts and/or actions have a discrimatory nature towards PWD. As a former government employee (social worker), I finally had to retire from working 5 years ago@ age 46 years b/c my disability “finally caught up with me” as I aged. Now , I feel like that the time that I was employed as a social worker in “the welfare office” was kind of like I was “sleeping with the enemy.” That is primarily because I have to receive medicaid to help pay for the expense of having a caregiver each morning to help me with the ADL”s of getting ready for the day. I had to cash in my deferred compensation (401K) in ordee to qualify for medicaid. In addition , more than half of my monthly income from SSDI & other retirement sources goes to my government determined copayment/participation amount for the caregiving services. It doesn’t how many caregiving hours , I use each month as the required copayment is strictly based on my income only. While , I am thankful to be able to live in a H.U.D. subsidized apartment building with low rent , I never dreamed that I never dreamed that I would have to live @ this poverty level, especially since I worked from age 18 untl age 46. 18 of those years as a professional with a graduate level education. I guess I just have to consider those 18 years to be like a “working vacation.” I chose to work all my adult life until I was no longer able age 46 so that my quality of life would be better. I also “sold out” & became an employee of the government entity that I now despise beyond measure b/v I wanted to get the best retirement benefits possible. However , now it feels like @ least from an economic perspective , that it was “all for not.” Talk about cognitive dissonance ! PWD are more oppressed than any other minority b/c we often must rely on the government for some degree of financial assistance @ sometime in our lives. Most of the oppression that PWD must endure, is in fact caused by the government itself, due to our “Darwinian culture with it’s highly competitive ,survival of the fittest mentality. I really could use some food benefits(formally known as food stamps , but I don’t qualify b/c eligibility is determined by my gross income before my caregiver expensives (net income.). I appreciate all you do Gary to educate our society about the employability of PWD , but the perspective that you present makes it look (OK , feel) like those of us who can’t or can no longer work , like slackers who are sitting on the “pity pot.” As for me , I am not a slacker on a pity pot. I am just outspoken in calling it like IT like it is. SOAPBOX. Anne Lewis M.S.W.
Very interesting! I have to admit I hadn’t exactly looked at the language that way, but clearly see your perspective.
Thank you, Lisa. That’s exactly my goal: to broaden my readers’ perspective!
“it’s all in his head. We don’t know what’s wrong with him”, given that he is in constant pain and slutggres to move. Then, DLA assessed him and stated he could walk and wasn’t in pain as he wasn’t taking pain killers at that time. The fact he had refused medication on the basis of contra-indications, and the fact that the only pain killer that worked any more was morphine, that was also a slap in the face.I wish I’d known that the fact he has 2 chronic conditions that affect one another would be ignored by DLA, and they would not look at what he was doing to keep himself active but rather how he was NOT keeping himself immobile. I wish I’d known that society would not help us when I decided to carry on working and he decided to try and work for himself, around his illness, rather than either of us give up. We’d be earning more if we just took benefits. I wish I’d known how unhelpful my employer (an NHS Trust) would be around the fact I had a disabled partner. I wish I’d known that we were going to lose 3/4 of our household income, as we would have made different financial decisions, given that we always thought he would work in some capacity and not be limited.
What do I wish I’d known? Everything! My epilepsy was dnogiased in the Netherlands, where I was living at the time. I was given no information at all, apart from hand in the driving licence and take meds. It was pre-Web, so I couldn’t do any research online and I had no access to info leaflets in English. When I returned to the UK close to 9 years ago, my new GP organised my free prescription card for me but beyond that I still wasn’t given any really useful info. No one told me I could apply for DLA, or get a Radar key, for example. I learned everything the hard way or by diligently researching on the now-quite-decent Web. My care team has always been first class in actually dealing with the epilepsy itself but not one of them gave me any useful or practical info on actually living with it. It’s one of the reasons I wrote my book Epilepsy the Essential Guide when the publisher approached me – I was very motivated to put all that hard-won knowledge somewhere others could access it all in one place. And even now I’m still finding out things – I’ve always told dentists I have epilepsy, just in case I have a seizure during treatment, but it was only two years ago when I registered with my current dentist that I found out that epilepsy meds can cause real problems with plaque build-up and the subsequent issues that causes. Why did no dentist tell me before that I need to be super-scrupulous about oral hygiene and ensure I see a dentist at least every 6 months?