When “Disabled” is a Dirty Word…Thoughts on Terminology

disabledI’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.

Happy Blogaversary to Me!

balloonsI like the end of May and beginning of June because I get to post about 2 cool things fairly close to each other – my yearly stroke update and my blogaversary post!

GirlWithTheCane (the blog) is three years old today. I started it as something to do while I was looking for a job and it’s one of the most fulfilling personal projects that I’ve ever undertaken.  Not just because it’s writing, which I love to do, and not just because it gives me the chance to write about things that are very important to me, which is awesome – but because it’s brought me in contact with so many amazing people!

This year I learned a lot about autism. I’ve been writing for Ollibean.com and reading the work of the other people that contribute there…reading the the things that they read…and the thoughts of people like Lydia Brown, Judy Endow, Henry Frost, Renee Salas, and Amy Sequenzia have educated me, touched me, deeply humbled me at times, and caused to me to examine how I look at autism and autistic people and at disability in general. It’s been a very educating year.

I’ve been disabled for fourteen years now, been in the developmental services field for over twenty years,  and sometimes I feel like I still know very little about it all.

Thank you to everyone who keeps coming back to read, and to all the people who’ve been such a support. I love that I’m not only writing about these things that are important to me but that people actually read it. 🙂

Cheers,

Sarah

 

 

Ontario’s June 12th Election and “End The Wait”

end the waitOntario, the province in which I currently live, is electing a new Premier on June 12.

Even if you’re not from Ontario (or not from Canada), you can pretty much guess the major issues around which this election revolves: jobs, taxes, transit and transportation, energy, education, social services, and health care. Here’s a cheat sheet on the major issues and the major parties’ position on each, for those so inclined.

Developmental Services and “End The Wait”

One of the issues that’s getting only minimal press is the state of developmental services in the province. Community Living Ontario has been trying to bring attention to the situation during the election through its “End The Wait” campaign.

I knew when I stopped working in social services that things had been teetering on “crisis” when it came to supports for intellectually disabled in the province for probably longer than I wanted to admit, and that it seemed like it was getting worse instead of better. I knew that say, if an individual was living at home with family and things to got a crisis point where the person couldn’t stay, finding an emergency placement was next to impossible. I knew that young people with high support needs were finding themselves in nursing homes, which aren’t even overseen by the same Ministry that looks after social services, because there were no spots in group homes. I’d spent the last year filling out applications with individuals and families for funding like Special Services at Home and Passports, saying even we filled out the forms, “You should know that you shouldn’t get your hopes up for this, at least not right now. The funding is frozen, and there’s a wait list. But you never know when they’ll unfreeze it, and it’s good for families to apply because it shows that there’s a need in the sector.”

Sometimes I felt like I could hear their hearts breaking.

Why “End The Wait”?

That was nearly 3 years ago.  According to “End The Wait”, this is the current breakdown on where supports for intellectually disabled people stand in Ontario:

  • 25 000 intellectually disabled children and adults are on wait lists for supports
  • 7000 intellectually disabled people are on wait lists for supports that would allow them to live in a home of their own.
  • Support agencies haven’t had their budgets raised in four years.

The 2014 budget promised $810 million to the developmental services sector over the next 3 years to deal with the wait lists and provide needed infrastructure for expanded services and innovative service provision, with funding made available over the next 12 months for individuals in crisis situations. The incoming government needs to commit that they’ll follow through on that promise, though. “End the Wait” asked the candidates for the Liberal, Progressive Conservative, and New Democratic Parties if they planned to follow through on this commitment.

The responses from the candidates to queries from “End the Wait” are posted on Community Living Ontario’s website. Obviously the Liberals have given this the most thought (or at least done the most work to make themselves sound educated about the issues.) The NDP committed to the funding, and typed a few words that said very little about their “plan” for developmental services. The Green Party kept it very short and sweet, but also committed to providing the funding as promised. The Progressive Conservatives didn’t bother to answer the query from “End the Wait”. Take from that what you will.

Where Does That Put The Voters?

In an election that, for me, is very much about trying to determine who is least among several evils, you’d think that the Liberal party’s knowledge of the issues and their attempt to talk a bit in their letter to Community Living about how they’d make use of the $810 million would move them up a step for me. The Liberals promised a significant amount of money before, dispersed over 4 years, but a requirement for agencies to provide more supports with the same amount of money in 2009 coupled with an outright pulling of the 2010 funding means that agencies really got half of what they should have (Read more here. The report is interesting, even if I don’t agree with their assessment of direct funding and its implications). I’m just suspicious of the Liberals in Ontario in general right now. And I’m a member of the Liberal Party of Canada!

So, if you’re in Ontario and you started reading this hoping that I’d have some words of wisdom about which party is best going to best represent the issues for disabled people in Ontario, and intellectually disabled people in particular, I’m afraid that I couldn’t tell you. I can tell you who won’t do it, though (my opinion only…”End the Wait” and Community Living Ontario haven’t endorsed anyone): The Progressive Conservatives. Not just because of Tim Hudak’s failure to respond to “End The Wait” and its concern, but because of hid commitment to merge ODSP and Ontario Works (programs with two very different mandates), and the similarities in his platform to that of Mike Harris in the 1990s. I may have only been a teenager, but I lived with a teacher. I remember. The “Common Sense Revolution” wasn’t kind to vulnerable people or the people that worked hard to support them, and the developmental services sector won’t see a penny of that $820 million if he gets in.

Give this one some thought, Ontario, and be sure that you vote on June 12th. And sign a petition to go the politicians. End The Wait.

Fourteen Years Post-Stroke, It’s all Good

stroke2I was actually planning to write this post, my annual “anniversary of my brain surgery” post, right when I was supposed to this year – May 29. But then Joe Scarborough pissed me off and I got distracted. So my post about how it feels to be heading  into my 15th year as a stroke survivor is a little late.

I know that there are people who started reading this blog and following me on Twitter because I said originally that it was going to be a blog about my stroke experience. I wonder sometimes if they think, “But she never talks about her stroke…?” Truthfully, I don’t really think about it all that much anymore. It flashes through my head when I’m trying to do something like open a jar, or move something with one arm/hand that requires two for good reason (I recently killed a printer this way, discovering the hard way that printers don’t like being dropped from even very small heights.)

But I don’t even really think of myself as a stroke survivor anymore. I’m just me. I had a stroke. I live with the way that it changed me, and life goes on. The experience put me further along a path on which I was already, because I’d already been volunteering in the disability sector when I had the stroke. But I don’t want what I’ve survived to be what I focus on for the rest of my life. Maybe that’s why, for the last couple of years, the anniversary of my stroke (or my rebirthday, as one of the online support communities to which I belong calls it, but I’m not really crazy about that terminology…nothing about me died about that day except for some neural pathways) has blown right by me.

But here’s the “State of the Union” at we head into my 15th year as a stroke survivor:

  • I still have very little use of my left hand, but really just because my thumb doesn’t move. Other than that, my hand has low tone, is generally quite relaxed (lies relatively flat, doesn’t sit curled up into a fist), but still has very basic range of motion. I can’t flex my wrist. If I use my other hand to wrap weak hand around a car door handle, I can open it, but eventually my thumb will move away from a grasp position to lie flush against my palm, and grasping will become very difficult. Getting my hand to do much of anything for very long is like trying to coax  my tw0-year-old niece into doing something she doesn’t want to – I may have some success initially, but sheer will just isn’t enough. It means that I do very unglamourous-looking things like open chip bags with my teeth, and when I’m out eating with people for the first time I give my standard warning that while I try to make it as presentable as possible, sometimes it’s just – not. But, on the other hand (ha! I made a pun!), I make one-handed living look quite natural, to the point where an acquaintance didn’t realize that I couldn’t use my left hand until I recently pointed it out to him.
  • My left  arm is still weak, but has good range of motion. I can use it to anchor things when I’m trying to perform tasks, and it’s strong enough that, if necessary, I can carry something in the crook of my elbow if I bring my arm tight against my body.
  • I can perform most of the tasks that I need to do on a daily (and sometimes not-so-daily) basis with one hand. This has included (because necessity is the mother of invention and I’m quite stubborn), getting a cat into a cat carrier. I am still learning to cook, with the help of a very kind and patient friend – this is coming along slowly.
  • I can walk up to 2 kilometres without a break. Walking that distance takes forty-five minutes to an hour. I could probably go further. I can support my full weight on my weak leg for very short periods and I can do very, very small hops, supported, on it. I’m starting to practice going down the stairs leg-by-leg instead of bringing one leg down a step and then bringing the other to meet it.
  • They’ve finally found a drug cocktail that will completely control my seizures, and I’m over two years totally seizure free. I even have my learner’s permit. I’m not driving, though. I need an adapted wheel, and for that I need a car on which to put the adapted wheel…and right now that’s just not in the cards.
  • I still have no sensation in the top of my head around the brain surgery scar, but that’s to be expected, I think. I think that the sensation on my left side is pretty good, but I thought it was pretty good when I broke my left little finger a couple of years ago and didn’t realize it, so I hesitate to speak authoritatively on that.
  • I still lose my words or mix them up especially if I’m tired or if I’m trying to get a lot of thoughts out quickly.
  • I may have mild narcolepsy. This, as far as I can tell, has nothing to do with the stroke. I’ve always had sleep issues, and had some investigation into them even before my stroke. I decided that it was time to do so again when I started falling asleep at my desk chair a few months ago and not realizing it until I’d woken up. I fell out of my chair one of those times. I’ve got enough scrambled in my head that I don’t need to risk whacking it off the floor and knocking anything else loose, so this sleep investigation appears to be the next medical chapter.
  • With the hired nerd job and my freelancing work, I’m back to working full-time – more, most weeks. It’s tiring, and I often crash for a day on the weekends.

It’s not perfect. Some days it’s very frustrating – not because I can’t get done what I need to get done (because I really can, for the most part…and I have a bunch of people who are more than willing to help with the things with which I do need help, when that’s necessary), but because of the (mainly attitudinal) barriers that make life challenging for most people with disabilities. I’m very mobile, but physical barriers (particularly poor snow ice and removal on sidewalks, stairs and ramps) is still a danger for me.  I’m still not always the greatest at asking for help, or accepting it when it’s offered…but I work on it.

I work on it. Isn’t that all any of us can do?

Considering that the doctors in the first rehabilitation hospital in which I spent time didn’t think that I’d get enough arm function back to really do much with my life again, things are going okay. As I’ve told people many times, lots of people have come out of the same surgery that I had with far more health issues than I did – and I had the benefit of great physiotherapy, and lots of it.

I also had (still have) wonderfully supportive family and friends, some of whom I met through writing this blog.

So there are many more positives than negatives, overall. And I look forward to telling you all about them again on May 29th next year. 🙂