With a Little Moxie Summer Blog Hop: My Connection With Disability

with a little moxieI’m going to try to catch up in the next little while with the With a Little Moxie Summer Blog Hop.

(Confession: I was trying to do that last week, too, until I realized that I was answering a prompt for a previous summer’s blog hop. Oops.)

This week I’ve got it together, and I’m starting off with the first prompt for this summer’s With a Little Moxie Blog Hop. Meriah Nichols has come up with some thought-provoking prompts about disability for this summer’s blog hop. The first one, posted June 20, was “My Connection with Disability: An Introduction”.

I’m writing about a friend for this week’s blog entry, with her permission. She’s intellectually disabled. I wasn’t sure how I was going to explain to her clearly what I was doing, but I’m satisfied that I got across to her that 1) I appreciate our friendship 2) I would like to tell other people about it, because I think it’s special and it’s important to me. 3) I would protect her privacy, but some people may guess who she is. I’ve read the post to her, and she seems okay with everything.

So, here’s how I got started in the disability field, long before I acquired my own visible disabilities (or learned to acknowledge my invisible ones).

“Get Some Experience”

When I was fifteen, I saw a video at youth group about a man named Harold Morris who was put in prison for a murder that he didn’t commit. When the truth came out and he was released, he started a career working with at-risk youth. As my mother drove me home, I declared that I wanted to be a social worker.

“Get some volunteer experience with social work agencies to put on your resumé,” she said. I don’t think she thought I was serious.

But I was. I answered a call for youth representatives to the steering committee that was investigating the implications of amalgamating four children’s social service agencies in my county into one. And I also called an agency that supported intellectually adults about an ad it ran in the newspaper. They were looking to match community members up with people they supported to see if some friendships would develop.

I was matched up with a woman named Ivy, who probably wasn’t much old then than I am now. She lived in an apartment, and worked a number of jobs, both paid and volunteer, in the community. We went for a walk during our first visit, and got ice cream.

She had a speech impairment, and I found it very difficult to understand what she was saying, but we got through it. Sometimes I still have trouble understanding her.  When I do, she patiently repeats herself and, when possible, shows me what she’s talking about.

We decided to meet again. We went out for coffee, but both us of us ordered Diet Coke. The friendship was cemented from there.


I really hadn’t had much experience with disabled people before I met Ivy, and I’d had practically no experience with intellectually disabled people. Spending time with her was what first really made me realize that disabled people and non-disabled people are the same in many more ways than they are different.

Pre-stroke, when I could drive, Ivy loved going for road trips, cranking up the music, and singing along, just like me. She still loves it when we get together for movies and snacks, go out for lunch or dinner together, or go to any kind of theatre (but especially musicals, just like me).

When we travel together (as we have a few times), she’s up for anything. She’s got the most adventurous spirit of just about anyone I’ve ever known. And while something (sometimes a couple of things) invariably happens on our vacations that makes me look skyward and yell, “Really? You’re going to drop this on two disabled women while they’re in a strange place with no easy way of getting home? Thanks! Seriously!”, she just takes it all in stride.

We’ve seen each other through health challenges and always cry a little bit, until the other one says, “It’s okay. I’m okay.”

She loves my family. She used to spend holidays with us, but her circles are a little wider now and my family’s circumstances have changed, and that doesn’t happen so much anymore. But I know that my mom liked having Ivy over for especially Christmas cookie making, when she and my sister and father and I would sit at the kitchen table and make Christmas shapes out of molasses cookie dough, and Mom would be in charge of baking. Inevitably a flour fight would break out, and Ivy would stare at us in horror, but she always came back.

It was my mom’s idea, when Ivy moved into a new apartment in my last year of high school, that she and I go over after school on moving day with cookies and some deck chairs for her balcony. Ivy was so happy. She really liked my mother. I remember Mom saying to me on the way home, “Your friendship with Ivy has been good for you, and it’s been good for her…and it’s been good for our family as well. I’m so glad that you brought her into our lives.”


And one day, Ivy and I were walking down the main street in our small town and a teenage boy sitting on the sidewalk called her a name. We kept walking, but when I looked over at her, she was crying. As I’ve said before, at that point in my life I was a renowned conflict-avoider who wouldn’t yell if I was on fire. But that day I marched back to the boys and said, “I hope you’re you happy with yourselves – you made her cry.”

They just looked at me, surprised.

“Her name’s Ivy,” I said. “And I don’t ever want to hear any of you call her a name again.”

I was so pissed off. I think it was when I started to become an activist.

Not Without Ivy

Since that time, I’ve worked with the agency that matched me with Ivy as a cooperative education student in both high school and community college, a Supported Independent Living staff for a very short time in the summer of 1999 (until I had my surgery), a volunteer in just about all their programs, 5 years as a transition planner for high school students, and a year as a member of their Board of Directors.  It was volunteering with that agency while I was waiting to hear when my surgery, still totally unsure what I wanted to do with my life apart from the fact that I had a ticking time bomb in my head, that made me think, “Hey, I like working with people with disabilities, and I’m not half-bad at it…why have I never considered doing this work as a career?”  I’d actually applied for a DSW program at a community college and been accepted before I was informed what my surgery date was going to be.

And then, because people who have had a stroke tend to be, uh, overly-optimistic about recovery time, I figured I’d still be able to go in September, but I don’t believe it was very long after before I decided that deferring might be a good idea. I remember making the call from the first rehab centre, so it was at least 5 weeks after the stroke, though.

But that’s a story for another time. My point is that I may never have gotten on the path I’m on, and may not have been as well-equipped as I was to adjust to a new life of being disabled, if it hadn’t been for Ivy. She’d touched my life, and the lives of so many others in the community, in so many positive ways. I knew that there was no reason that I couldn’t do that as well, no matter how much of my mobility I got back.


Not that it’s always easy for Ivy. But I’m happy that I can help when it’s not easy. That’s what friends do.

I’ve seen many times now, in my work in the developmental services field, that agency supports are vital. But I’ve also seen that often it just takes one friend in the community to make an amazing difference in a person’s life. I don’t know that I’ve made an amazing difference in Ivy’s life, but I know that she values our friendship, and I certainly value hers.

She is like family to me.

Check out what others have written about “My Connection with Disability” for the With a Little Moxie Blog Hop here.


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On Faith and Intellectually Disabled People: Jesus Saves

intellectually disabledI was coming out of an odd space, spiritually, going into my AVM surgery.

I was raised in the Anglican church, which has historically been relatively liberal as the Christian denominations go. However, the congregation in which I spent my teenage years had decidedly Pentecostal leanings – very un-Anglican, where the joke used to go that when people ask “Are you saved?” we’re genuinely confused and ask, “From what?”

I liked my church, however, and threw myself wholeheartedly into being involvement in its activities. The truly kind and way above-and-beyond-the-call-of-duty support of the youth group leader was one of the main things that pulled me through the eating disorder that I developed when I started high school.  I remember many good times with the youth group, the server’s guild, the drama society, and the choir. But doubt really began to take hold in my last year of high school, and I started to be able to wonder if I’d be able to keep believing some of the things that I was being taught: that people who hadn’t asked Jesus to be their saviour were going to hell, that homosexuality was a sin, that abortion was wrong…that the depression that I was experienced in my last year of high school wasn’t giving up its hold on me because I didn’t have enough faith…

It was the beginning of me leaving Christianity behind. I was 18. It would take six years of basically spiritual crisis, sometimes just on the back burner in my head, other times so intense that I wondered how I’d live with it, before I felt truly comfortable saying to people, “I used to be a Christian, but I’m not anymore.”

And my disability is tied into it in some ways, but I was 22 and through the worst of the religious angst when I figured out that I had an AVM. In fact, I’d just spent a summer with two great friends in British Columbia, traveling and writing and talking to spiritual people from all walks of life. I was feeling pretty good about my spiritual life, and that was probably a good thing, because in the fall I bled into my head during a job interview. That put enough on my plate for a while without having to deal without the internal face-off between intense anger at God and fear of going to hell if I left Christianity.

I now recognize a disability issue from even before my “doubting period” started, however, when I was at a counselor at a Christian camp one summer.

Jesus Saves

He was a lovely little boy, intellectually disabled. The camp was a Pentecostal camp, and being there over the summer was all the better because one of my best childhood friends was a counselor there, too. We were both sixteen.

The “Jesus saves” message was pretty hard-core at this camp. The kids began each day singing choruses, and they memorized Bible verses. The activities were fun, with a Biblical theme. We had cabin devotions at night. Lots of kids prayed the Salvation Prayer, and the staff celebrated.

I first prayed the Salvation Prayer when I was six. I’d gone with a friend to his Bible activity group, and there had been an opportunity for kids that had wanted Jesus to save them to go into a room with one of the leaders and pray. My friend went, so I did, too. I prayed the prayer as instructed, and the group leader said, beaming, “You’ve asked Jesus into your hearts, children! Wasn’t that easy?”

“Will he be in my heart by bedtime?” I’d asked, confused.

“He’s in there right now,” she said. That hadn’t helped. Apparently I’d done something important, and something good, because the lady seemed pleased, but I had no idea what it was.

I remember thinking about this the night that the intellectually disabled boy prayed the Salvation Prayer toward the end of his week at camp. The staff and the other campers made no secret about how pleased they were. They hugged him and told him how glad they were, and there were a lot of pleased “Praise Jesus!” utterances around him, and from the smile on his face it was clear that he understood that he’d done something of which people highly approved, and that everyone was very pleased with him.

Does It Matter?

The cynic in me wondered, “Does he really understand what just happened? Or has he seen other kids get lots of positive attention over the course of the week for doing this and decided he wanted some of that too?”

Not that I think that doing the latter would have been nefarious in any way. I actually think that you could ask that question about any kid that age in his position (the age group that week was 7 -8). I still have questions about the Salvation Experience to which there don’t seem to be easy answers, such as “What if you’re saved and you live a godly life for a while, but then you stray? Will you still go to heaven?” Is it really reasonable to expect that something that something clicks in a kid’s head that folds back a veil, that they can say, “Ah, Jesus enters my heart. I understand this mystery. I see the implications. I want this. Let’s pray!”

The other counselors seemed to think, that in this boy’s case, this had happened. And maybe it did. I’m not a Christian, I’m barely an agnostic, but I certainly believe that there’s some stuff out there that we just don’t understand. And I know that sometimes I’ve been blown away by some of the profound insights on spirituality and religion that intellectually disabled people with whom I’ve worked have produced, as if it was just common-”Doesn’t everyone think this way?”-sense.

I haven’t realized until I started writing this that perhaps I still have a *little* bit of religious baggage. Because does it ultimately matter whether the little boy totally understood what he saying or whether he just prayed the Salvation Prayer because he knew he was going to get some hugs and “Way to go”s? Does it matter whether it was due to a prompting from God or a desire to get the positive reinforcement that he’d seen others get over the week?

We’ll never know, he was seven years old, and he sure was happy that night. Shouldn’t that be what camp’s about?

Maybe it really doesn’t matter, but there’s something that still bothers me about it. I need to do some more thinking about it to figure out whether it’s a legitimate concern or something that’s just my issue.

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Disability Visibility Project Underway

disability visability projectIn celebration of the American with Disability Act’s 25th anniversary, disability advocate (and all-around awesome person) Alice Wong and National Public Radio’s StoryCorps have launched the Disability Visibility Project.

People in the disability community are invited to schedule an interview time at one of StoryCorp’s three locations, or at one of the mobile locations across the country, so that they may add their story to the Project and have their voice preserved as part of the diversity that make up America’s disability history.

The Disability Visibility Project will collect interviews until July 2015, and then use them to create an archive that will be included in the American Folklife Center at the Library of Congress.

Alice Wong told writer and autism advocate Laura Schumacher in an interview, “The ADA was a landmark civil rights law that prohibited discrimination based on disability. In the year leading up to the 25th anniversary, we are taking this opportunity to remember and reflect as a community on the tremendous changes we’ve experienced so far.

I think that this is a fabulous idea, and wish that I could participate myself, but…Canada, lol!

To find out more about the project and how you can participate, visit the website:  Disability Visibility Project

Please spread the word about this opportunity to make sure that American disability history is recorded, so that as many people as possible can participate.


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Happy Canada Day!

canada dayThis is my third Canada Day post.

Along the themes of my other Canada Day posts, I’d like to reiterate how lucky I am, as someone who’s needed a lot of medical treatment, to live in Canada. Cost wasn’t a factor in my decision (and ultimately, as I had next to no money when I discovered that I’d need brain surgery, my family’s decision) to have my AVM treated.

Heck, I could barely have afforded the first ambulance ride to the first ER visit, let alone the ER visit itself, if I’d lived in a country without universal health care. Even with my family helping as much as they could, how could we have afforded the 14-hour brain surgery with one of the best AVM surgeons in North America, let alone the rehabilitation that came afterward?

My new friend Cheryl Green wrote a great essay about brain injury for the “Criptique” anthology (which I highly recommend, by the way) in which she talks about many things that I could ramble about for hours…but today, as a Canadian, I’m struck by her observation that significant recovery after a brain injury (I use “recovery” even though I’m trying to avoid it…it’s not sitting well with me today) is often due to being in a privileged position. Well, if my story is any indication, that’s certainly true.

My Canada, My Privileged Recovery

Stories vary from region to region, as some provinces as definitely wealthier than others right now. The late Elizabeth McClung had a terrible time getting health services when she was really struggling, that would have been easier for her to get if she’d lived in my province, as British Columbia was struggling to pull itself out of debt after the Olympics after at the time. She experienced a much different health care system than I did. That wasn’t right. It was heart-breaking and infuriating to read her writings about what she was going through.

I didn’t live her experience:

I didn’t have to fight with insurance to stay in rehabilitation (in-patient or out-patient). In fact, staff fought for more inpatient rehabilitation for me once my allotted stay at the first hospital ended.

Nursing support was available for when I wanted to come home on weekends from the first rehabilitation hospital.

I didn’t have trouble getting onto the Ontario Disability Support Program. If I hadn’t, my family would have supported me, but the huge financial burden of paying for my medications was lifted because access to a drug plan came with ODSP.

When I was concerned that I’d had another small stroke, after being discharged from the AVM clinic, a phone call was all it took to get me back in for some diagnostic tests. A person I know who lives in the US never got diagnostic tests done after his stroke. He couldn’t afford insurance at the time.

Canadians DO pay for Health Care

As I’ve explained to the intellectually disabled people that I’ve worked with around tax time each year, Canadians do pay for health care with their taxes. That many people do not have the positive experience with the health care system that I have makes me sad – not just because it proves that there are parts of it that are most definitely not working well, but because it gives ammunition to those that would say that because some people have had a bad experience, the whole thing should be scrapped, especially to friends Stateside that seem to think that Canada’s system looks like what Obamacare presently looks like.

Just some notes on Obamacare:

Yes, the roll-out was problematic, and there were some responses by the Democrats (including Obama himself) that made me want to :headdesk:.

I still think it’s a step in the right direction.

For anyone not clear on my position on this: Canada’s system is not perfect. But the fact that money (or lack of it) doesn’t have to be a consideration when Canadians are evaluating healthcare options *is* one of the things that makes me proud to be Canadian.

It does make us privileged, but that’s not something about which we should feel badly. It’s just something to keep in mind.

May I always be mindful. Elizabeth helped to teach me that. I miss her.

Happy Canada Day!

“Criptiques” is available here, and is a must-read.

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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.

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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. :)





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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.

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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. :)

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Joe Scarborough Continues to Misinform the Public about Autism

Joe ScarboroughSo Joe Scarborough is at it again.

This marks his second appearance in the blog for passing off his opinions about autism as fact on MSNBC (and, researching this story today, I found out that he’s done it a third time that I missed), and I’m writing about it to add my voice to those that are asking that he please not do it again.

We’ve already got PETA warning people this week about a totally unsubstantiated claim that there’s a link between autism and consumption of dairy products. We don’t need Joe Scarborough expounding on what appears to be a favourite talking point about a supposed link between autism and violent behaviour.

Quite enough of that has been going on since last Friday.

Mass Killings and the Media’s Love Affair with the Autism-Violence “Link”

It’s been just over a week since Elliot Rodger opened fire in Isla Vista, killing 7 people and wounding 13 others. And, of course, the media has been making much of the fact that he was autistic, although some sources are now disputing that he was actually diagnosed; see here and here.

Here are 4 articles from major news sources I found just by doing a quick search, that commented on the fact that Rodger was autistic, implying a link (more strongly in some cases than others) to his violent behaviour:

California killer’s father struggled with money, court documents show

Mental illness in spotlight after UC Santa Barbara rampage

Virgin killer’s parents read his hate-filled manifesto then called police then rushed to stop him when they heard of murder spree on their car radio

Elliot Rodger is Isla Vista drive-by killer

And, of course, Joe Scarborough felt compelled to comment, as he did regarding the gunmen in the Aurora, Colorado movie theatre shooting in 2012 (he stayed blessedly quiet after the Newtown shootings), that Rodger had Asperger’s Syndrome (which now falls under the umbrella of Autism Spectrum Disorders). It makes perfect sense to him to talk about this, as he knows there’s clearly a link between an autism diagnosis and the tendency to commit this sort of violence. He’s done this twice about Elliot Rodger.

Except that the consensus is now that there’s not a link. I’d expect Joe Scarborough to know this, as a media person.

I’d expect that Joe Scarborough would have done his research on this, and that he’d know that scientists no longer put much stock on the studies that originally suggested those findings (see this article for a brief summary of the research). Perhaps he thought that there’s a bandwagon on which to jump at the moment, given that the Washington Post wrote an article recently about a new study suggesting a link, but it’s looking like even that study was flawed.

The research just doesn’t support the idea. But Joe Scarborough wants to keep talking like it does. And it’s important that he stop.

Why is it Important, Joe Scarborough?

I’m not writing about this because I had particularly strong feelings either way about Joe Scarborough or MSNBC before this latest “commentary”. Granted, I wasn’t a huge fan of either. But my cable package doesn’t let me get MSNBC so it’s kind of a moot point. I rarely watch 24-hours news channels these days anyway.

I have strong feelings now. I definitely wouldn’t watch MSNBC, even given the opportunity, as long as they think it’s okay to let this sort of ablism continue to happen on the network.

This is important, Joe Scarborough, because after a highly emotionally charged event like the UCSB shootings, people are upset and hearing selectively. From what I saw and read, the media was a bit better than after Newtown especially about explicitly stating that even though the shooter was autistic, experts didn’t believe that it was a factor in his behaviour, instead of just jumping on the “autism = violence” bandwagon with no qualifying statements. I will give them that. However, people were (are) understandably in shock, and sad…angry, scared, and looking for the “why” behind the event, and in that state, hearing “Elliot Rodger had high-functioning autism” (yes, I’ve seen it put that way, even though using the functioning level label is quickly falling from favour within the disability community…there are sensitivity issues in the coverage for which the media does not get a free pass) is going to stick with them.

Especially when a media figure like Joe Scarborough goes beyond speculation and starts deliberately giving out information based on pseudo-science and/or outdated research. It’s bad enough that 24-hour news networks speculate about the details of a story because they don’t know enough facts yet and they still need to fill time (and regular CNN viewers know that it’s come back to bite that channel in the ass before). It’s quite another to start giving out the wrong information about a group that’s already fighting misinformation campaigns and discrimination when the right information is easily accessible.

It’s unethical and irresponsible on Joe Scarborough’s part, and it’s just another sign of how devalued autistic people truly are in society that MSNBC hasn’t reprimanded him for it, or reprimanded him more publicly, if they did. He did release an “apology” in an off-air statement after pushback after his remarks after the Colorado shootings, but there was nothing on-air.  If he’d started going on, on-air, about an unsubstantiated claim that belonging to a certain race made someone more likely to commit mass violence, I would think (hope) that the network would shut it down promptly and emphatically and require, at the very least, an on-air apology. Certainly two repeat offenses would likely result in the person being fired.

Why is this different? Why has Joe Scarborough gotten away with doing this three times?

Imagine How It Must Feel, Joe Scarborough

I know that the autism witch hunt after these events has gotten to the point where one of the first things I ask myself after hearing about a mass shooting like the one at UCSB is, “I wonder how long it will be before someone asks whether the shooter is/was autistic.”

I’m not autistic, so I can’t understand what it must feel like to know, for autistic people,  that it’s never very long.

I try to think how I’d feel if the question was about an unsubstantiated link between stroke and violent behaviour that the media kept insisting on bringing up, and as someone who would be then be affected by the question, these feelings come to mind:






It’s a heck of a lot to shoulder. It’d be quite a thing to explain to an autistic child (to any child): “You’re okay…they’re only saying that because they thought at one point that autistic people were more violent than other people. They were wrong about it, but they…can’t let it go.”

Let it Go, Joe Scarborough

Joe Scarborough, no one likes being lied about, especially when those lies are damaging.  If you feel the need to speak about autism in connection to mass shootings, speak about it accurately.

For the sake of your autistic son, if no one else.

With all due respect, I don’t want to have to write about you (at least not in this context) again.

For those interested…

Joe Scarborough’s commentary after the 2012 movie theatre shootings in Aurora, Colorado

Commentary on the “non-apology” and a great interview on the autism-violence “link” with Autism Self-Advocacy Network President Ari Ne’eman and journalist Mike Elk (also after the Aurora shootings)

Joe Scarborough’s first comments after the UCSB shootings – “…he was on the Asperger’s scale – big surprise.”

Joe Scarborough’s most recent comments. The general comments about talking about mental health are spot on – but he brings it back to Asperger’s Syndrome, which he doesn’t feel he can name on the air because of criticism that he’s (rightfully) received in the past after doing so.

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The TALK-SC: Sex Education for People with Intellectual Disabilities

talk-scIn a discussion with friends that came up after I published the posts about Judge Christopher McFadden and his ruling on a case involving the rape of a young woman with Down Syndrome, questions came up about whether she could really consent to sex in the first place.

“Depends on the person,” I said. “It gets complicated.”

I didn’t go into it any further because it *is* complicated, and having to talk about the issues involved with sex and sexual consent in adults with intellectual disabilities is something that’s still relatively new for the field. Society tends to treat adults with intellectual disabilities like they’re children, forgetting that they’re sexual beings with adult sex drives and the same desires as most people to be in romantic relationships. Changes in how we view the rights and responsibilities of adults with intellectual disabilities, and increased opportunities for community involvement and interaction with others, have given them opportunities to explore the world of romantic and sexual relationships that previously weren’t available to them…but have created a need that historically hasn’t been there for education and safety training.

With so many differing attitude in society regarding sexuality, confusion about it among people not facing the challenges associated with an intellectual disability, and discomfort about talking about it general, it’s no wonder that people with intellectual disabilities don’t get information about relationships and safe sexuality that they need and are entitled to.

Which is why I was so excited to hear that disability advocate Dave Hingsburger and a team of of professionals who have worked closely with people with intellectual disabilities in the area of sexuality had developed an assessment that could either be used to determine in what areas an individual needs education about sexuality (and to assess how effective that education was), or to determine (with an appropriate professional’s assistance) whether a person can legally consent to a sexual relationship. It’s called the TALK-SC.

I was very excited to see the TALK-SC. I’ve talked before about how I’ve had to work with individuals to assess their level of knowledge around sex and sexual safety. Getting the required information without prompting or putting words in someone’s mouth is tricky.

I asked Dave if I could blog about the TALK-SC. I really like it, for several reasons:

1. The Person Being Assessed Has to Consent to Having the TALK-SC Done, and Can Revoke the Consent at Any Time

The assessment instructions make it clear that the person is at the centre of this. They are to be informed about what the assessment will be used for, the benefits and risks of taking it (especially in the Consent context, which could result in them not being able to have sex until getting education in some areas of need identified by the TALK-SC; I don’t know enough about this area of support to know how this would be enforced), what they’ll be talking about, who else the assessor will be talking to, and that they can revoke consent at any time. The materials explaining the TALK-SC to the person being assessed, and the consent forms, are wonderfully plain-language. The consent forms in particular are among the best that I’ve seen.

2. The Must-Pass Questions Get to the Core of the Issues

In order to pass for Consent purposes, 6 questions have to be answered correctly, and they nicely get to the heart of the issues around public and private behaviour, consent and safety:

1. a) If someone asks you to take your clothes off do you have to?  b) Why would a doctor ask you to take off your clothes?

2. Two people are having sex. What are their bodies doing?

3. A person wants to have sex with their partner and the partner does not want to.  What are their choices?

4. You are making out (kissing and touching) with your partner, they ask you if they can touch your penis/vulva (“vagina” can be substituted) and you say yes. When they start, you get uncomfortable, can you still say no?

5. You are on the bus and your crotch is itchy, is it okay to pull your pants down to scratch it?  Why or why not?

6. You see someone really sexy in the park and you decide to go to the bushes and start to masturbate. Is this okay? What can happen to you?

These questions are part of the 5 scored modules in the TALK-C. The person must get a 70% score in each TALK-SC module to be deemed to have enough of an understanding of the issues surrounding sexuality to be able to consent to sex.

3. Professionals Are Involved

While a support person (preferably with another support person present) can administer the pre-test portion of the TALK-SC that’s designed to assess a person’s level of knowledge, the post-test (whether it’s being given as part of the process to assess ability to give informed consent, or to re-test knowledge after training) is given by a clinician or someone with experience with sexuality in people with intellectual disabilities.

Thank goodness…especially regarding the consent issue.

I probably could handle giving the TALK-SC, but making the actual ruling on consent isn’t something that someone without considerable knowledge and experience should be doing (my opinion). And it’s much more influence that I personally care to have over anyone’s life, quite frankly. I’m all for keeping people safe, but I have a healthy sense of when something’s outside my knowledge level and skill set, and I don’t like to stretch very far when other people are involved.

Which is why I overcame my initial resistance to the idea that, when conducted to investigate ability to consent, a information-gathering interview is also done with someone close to the person being assessed. I generally don’t like the use of interviews about a person where they are not present as a means of gathering information, although I do recognize that sometimes there is no other alternative. The TALK-SC instructs that the person is to be made aware that this is going to happen, they’re told about the questions that the person will be asked, and can stop the assessment if they’re uncomfortable with an interview being done with others at which they’re not present, so this is really done as ethically as it can be (again, my opinion). And for a decision with potentially far-reaching implications for a person’s life, it makes sense to get as much information about a person’s level of insight about sexuality as possible. Ultimately the ruling around consent is about keeping people safe.

4. Even a Finding That a Person Can’t Consent is Treated as Temporary

The TALK-SC definitely allows for the possibility that people may be found to be in a position where they have to be told that they can’t have sex. However, the TALK-SC is also very firm that this circumstance is to be treated as temporary, pending appropriate education, and that a prohibition on having sex does not mean that a person cannot be in a relationship and hold hands, kiss, etc. It assumes the best in people, and assumes that people can learn and grow. Any sort of support for people with intellectual disabilities should be making these assumptions.

The Importance of Tools Like the TALK-SC

As I said at the beginning of this entry (and as I’ve said several times already in this blog), people with intellectual disabilities have the right to be in romantic relationships and the right to high-quality education about all aspects of being in a romantic relationship, including sexuality and sexual safety. This is a great step forward in that area.

I would assume that any sort of assessment that comes from a team involving Dave Hingsburger would have these assumptions at the centre of it, and be firmly rooted in compassion and deep respect for the people for whom it was developed. The TALK-SC exceeded my expectations. When I first heard about it, I thought, “It’s Dave, so I’m sure it’s going to be great, but I have no idea how he’s going to pull it off,” and I really am impressed by what he and the team have come up with. It is being offered to agencies and advocates free of charge. If you’d like to receive a copy, email Dave Hingsburger at dhingsburger@vitacls.org.

The TALK-SC was developed by Dave Hingsburger, K. Beattie, T. Charbonneau, J. Hoath, S. Ioannou, S. King, S. Loftman, L. Lynn, K. Miller, M. Mudunuru, C. Outhwaite-Salmon, and S. Woodhead, with support from MacKenzie Health, Vita Community Living Services, Angie Nethercott, Patty Barnes and and Joe Jobes.

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