Saturday, 21 June 2014

When "Disabled" is a Dirty Word...Thoughts on Terminology

I've been part of a discussion in an online group of disability advocates, most of them disabled themselves, about disability terminology. The specific question posed was: Are we disabled or impaired?

I don't know any of these people very well. They all seem very nice and very committed to what they do, and I enjoy hearing their perspectives. But the discussion has left me confused. My takeaway from it was that the people in the group did *not* like the word "disabled" and were disturbed by my comment that a growing number of people in the disability advocacy/activism sphere don't like person-first language. And I'm not sure how well my comment went over that I was puzzled that, for a group of disability advocates, there seemed to be an attitude in the group of "I am *not* disabled! I am *not* one ONE OF THEM!" To my mind, everyone seemed to be twisting themselves into pretzels to find a self-definition that didn't include "disabled" or "disability".

They're all entitled to their preferences in this area, of course, and I stressed several times that when I'm doing advocacy work, I ask the person their preference for disability terminology and respect it. Just because I prefer "disabled" to "person with a disability" doesn't mean that everyone has to go with it!

Apart from the philosophical reasons that I like "disabled", I feel it's an accurate word. I'm a disabled person, and my disability prevents me from doing everything that I was able to do when I was non-disabled, sometimes in very significant ways. I think it's important to acknowledge that.

I'm Disabled and I'm Okay With It

Some people might be surprised to hear me say that. I know that in some jobs, people felt like I was setting people I supported up for disappointment by suggesting that they could do things that they had no hope of being able to do.

I don't agree, but I do acknowledge that it's complicated. I really don't believe that I have the right, ever, to say to anybody, "No, you can't do that, no matter how unlikely it seems to me at the time that they've set a goal that they'll actually reach someday (due to whatever reason). People have the right to have dreams. I worked with people to come up with a plan for putting in place what they wanted to happen in their life. If someone wanted to become a Broadway dancer then damn it, we'd look into what someone had to do to become a Broadway dancer.

Sometimes I'd be able to put get people started on making dreams a reality. One young man wanted to enroll himself in a particular community college course, but needed a reading comprehension course that, because of his special education program, he'd never taken in high school. I got him signed up in an academic upgrading program to get the course. But we talked very frankly before did it. We talked about how there wouldn't be the Educational Assistant support that he'd had in high school and that, while he could certainly ask the teacher and his parents for help, he'd be working very hard and could possibly find the course difficult to manage. We talked about strategies to help. We talked about staying in touch every week so that we could monitor how this was going and see how we could meet any challenges that might arise.

I believe in dreams, but I'm also a planner. I'm very practical.

I couldn't always make peoples' dreams come true. But everyone has to learn to deal with the reality that they're going to have dreams that aren't going to come true. I wanted to be a ballerina once upon a time, but learned quite early in life that it wasn't likely to happen. I'm just not physically built for that kid of career. I learned the hard way that I'm not going to be, no matter how low my weight is.

It was hard to hear when I was ten years old that I wasn't going to get into the National Ballet School because I was too chubby, but they did not say, "Stop dancing." People that I supported learned, once we looked into what it would realistically take to make some of their dreams come true, that these things weren't likely to happen for them, either. But I tried to find ways for them to keep that dream alive in their lives in other ways - so that they never heard "Stop dancing" either. I'd never suggest to someone that they abandon a dream...I might suggest that they go at it another way, though. Again, sometimes I think presenting that as an option is the responsible thing to do, as a support person for disabled people

So yes, I believe in encouraging people to dream big. But I also believe that "The Only Disability is a Bad Attitude" nonsense that implies that a disabled person can accomplish  anything if they try hard enough is unfair. As support people, we need to nurture disabled peoples' strengths and talents and support them as much as possible to accomplish what they want to in life. However, we also need to be realistic that disability (at least at this point in its history as a social creation) presents limitations that sometimes, as unfair as it is, people can't get around. We do disabled people a disservice to suggest otherwise.

Story Time

Once I was well enough after my stroke, I went to community college get my Developmental Services Worker diploma. The DSW diploma is specific training for those that want to work in support positions with intellectually disabled people. I'd planned to start the two-year program before my surgery, but had to defer a year after my stroke.

I asked the program heads when I started, "Given my disabilities and the physical nature of a lot of support work, is this program still appropriate for me?" I was told that they were committed to student success, and that I'd have all the accommodations that I needed to complete the program.

Which they did provide, in spades. In fact, I told Student Services a couple of times to back off and stop trying to push things on me that I'd clearly said I'd didn't need. But I'd asked them the wrong question, and in retrospect I'm annoyed that they couldn't see it. Because while it was awesome that they made it possible for even me to complete my community placements easily  (and some of those did require physical work that would be difficult even with my level of functioning now), I saw quickly once I started job-hunting that those sorts of intense accommodations weren't available in the entry-level support positions primarily available to people who had just graduated from the program. The community college told me they'd get me through the program. They didn't tell me that it was going to be very, very difficult for me to get a job.

I couldn't do lifts or transfers.

I couldn't get certified in the NVCI holds. Even getting the required First Aid certification that let me participate in my school program had been dicey.

I was useless for group home work. For logistical reasons alone, let alone safety ones and ones related to preserving dignity, supporting someone with just about any activity of daily living really required two functioning hands. Not to mention that I couldn't cook and that folding laundry took me forever.

I couldn't drive a car.

I did get a job after a year with a School Board as supply Educational Assistant, which shocked the hell out of me. They didn't realize just how disabled I was until they'd actually hired me, and advised me that I wouldn't likely get called often. When they did call, I worked my ass off at the stuff I could do and constantly challenged myself, asking for accommodation for only the tasks that had the potential to put students at risk. By my third year, some Educational Assistants were asking for me when they had to take time off.

By that time I'd also gotten a job with an agency with whom I'd volunteered. It was a case coordination and planning job, so direct physical support wasn't required. When I needed transportation to complete tasks, the agency found ways to facilitate it. It was a great job, and I was sad when, as often happens with these government-funded jobs, it suddenly ended.

So yes, there were jobs, but I wouldn't get either if I applied for them now. Funding has changed service provision in both the education and social services sector since I had those jobs, and I'm even less cost-effective now than I was then (even if I was good at what I did).

I don't regret for a moment going to school to get my DSW certification. It was a good decision at the time, for a number of reasons. But I wish that I'd been told, "We'll get you through the program. But your odds of getting a job aren't good, because your disabilities don't make you a good fit for most of the most of the jobs that people start out in this sector." I feel like the administration was so focused on making sure that any disabled person could complete the program that they lost sight of the fact that the program's ultimate goal was to prepare us for *employment*. I feel like they did me a disservice by not acknowledging my disabilities and the limitations that they create for me, as a person living in a society largely designed for non-disabled people. Society is simply not far enough along in its progression toward a true culture of inclusion that I can work in the environments in which my DSW diploma primarily trained me to work - ones that require employees to provide often physically demanding direct support, with a minimum of staff present at any given time, so that it's very difficult to accommodate my particular disabilities. Fact.

And in those sorts of environments where client safety needs to be  the number one priority, I'd rather believe I'm a liability and not be in those sorts of jobs than insist that I'm not and discover that, say, in an emergency situation, I am. If I'm one of even three staff that has to get everyone out of a group home in the middle of a night because of a fire, and there are people in the house that need assistance with lifts and transfers to get into their wheelchairs, I'm a liability.

I'm disabled, and I don't understand why it's a dirty word.  When I acknowledge and accept the fact, I can plan how I'm going to create the life that I want in spite of it - even if that's not the life that I always wanted.

The good thing about not always getting what you want is that sometimes you end up getting something better. :)

Sorry this was so long...still thinking this one out, obviously. Have a great weekend.


  1. Ahhh, "A rose by any other name would still smell as sweet....." Romeo and Juliet, Shakespeare......what matters what we call that which is pure, it is still valued and

  2. Spot on. I feel just the same as you, and I love the way you shared your reasoning.

  3. Fantastic post! I've seen things like this before (and somewhat experienced it myself) where the idea of talking about disability is either so dirty, so scary, or people think that you're going to sue them for discrimination that they just don't bring it up. In your case of getting your DSW, well, could have helped. Uniquely abled? Phooey!

  4. The Brits have worked this out very neatly: "impairment" is the condition; "disability" is the social impact of impairment (using a cane is an impairment. Not being allowed to work because you use a cane is disabling). When you look at it this way, it makes perfect sense. Applying this to developmental disabilities requires a LOT of active advocacy, unfortunately, but if you think about it the same prinicples apply.

  5. Yes...and the best way to refer to a disabled person is by his or her name :)

    Phil, I always think of you when I write this sort of post because...yeah, whether we say "disabled" or "with a disability", it doesn't change the fact that people experience discrimination and live in poverty and don't get supports that they need...and please know that I'm mindful of that, and that it's discussions with words that have made me so.

    Unfortunately, I'm always going to be one of those writer-types that likes to explore words, you know? ;)

  6. Thank you, Emily! I'm glad that it all came across, because I really felt like I was rambling!

  7. Hi Cheryl! Thank you so much for stopping by. I'm actually thinking of going back to the school and saying that, as much as I enjoyed going through the program, I really would have just preferred that they'd have been honest with me. It feels like it would have been more respectful, you know?

    Then I could have decided for myself it I wanted to continue. It almost feels like a "consent" vs "informed consent" issue...

  8. Hello! Thank you for this. It sounds like Britain is more actively applying the definitions put in place by the World Health Organization than we are in North America? While I didn't understand the implications of those while I was learning about them, your explanation makes it very clear. It would be simpler, and so much more desirable, with the focus on the social model...

    Are you from Britain? I haven't blogged on it in quite a while, but I do follow the developments around the austerity cuts. I saw some footage from the Westminster protest last weekend...wished I could have been there!

  9. Not from Britain - from NYC. I parent three extra-ordinary people, and developed an active interest in the field after dealing with beaucoup bs over time... just got a Masters in Disability Studies, as a matter of fact: I'm an MADS - lol. We need to regain class consciousness here in the States - can't imagine anything like the crawl up the capital steps happening today!

  10. […] When “Disabled” is a Dirty Word…Thoughts on Terminology – I’ve often found myself confronted with the notion that disability is an awful, negative concept. I totally disagree – I’m proud to use “disabled” as an identifying term. Sarah Levis’ reflection on why this isn’t the case is eloquent and important to consider. […]