Interview with Cheryl Green

As promised, here’s the link to the interview that I did with Cheryl Green: http://whoamitostopit.com/2014/08/01/stories-brainreels-sarah-levis/

For those of you who don’t know about Cheryl Green and her work, she’s an activist in the disability community, a filmmaker, and a writer. She’s particularly focused on issues associated with Traumatic Brain Injury. She uses her company, Storyminders, to “create a platform for people with brain injury to use the arts to increase connectedness within this often isolated population and to promote critical dialogue and change in the larger community.”

You can see scenes from “Who Am I to Stop It”, Cheryl’s documentary about isolation, art and transformation after brain injury, at whoamitostopit.com.

I contacted Cheryl after reading her essay in the Criptiques anthology, as what she had to say really resonated with me. It turns out that we’re on the same wavelength about many things, and I was really honoured when she asked to interview me.

Something that came out this interview that I haven’t been able to stop thinking about…when we talk about person-first language and my reasons for not using it anymore, Cheryl makes a beautiful point about how when person-first language first came into use, it was revolutionary because disabled people really *weren’t* considered people, and about how we need to remember the work of advocates that went before us, that fought hard to change the perceptions of disabled people so fundamentally.

Perhaps language is evolving past person-first now (as language does), but I was reminded that I need to reach out and let people who have been on the front lines of this for a long time know how much I appreciate what they’ve done.

Meeting new people is one of the best parts of writing this blog. :)

Have a great weekend!

 

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A Little Moxie Summer Blog Hop Challenge, Prompt #2

with a little moxieThe second prompt in Meriah Nichol’s Summer Blog Hop Challenge over at A Little Moxie is: Coming to Terms With Disability in My Life.

This question is timely, as I actually touched on this subject with brain injury advocate Cheryl Green when she recently interviewed me.

I talked in my last summer blog hop post about my friendship with Ivy, an intellectually disabled woman that I met through a befriending program at an agency when I was fifteen years old. When I had my stroke, Ivy and I had been friends for seven years. I’d seen how the agency with which she was was involved had made it a goal, in its supports for her, to ensure that she lived as independently as possible and that she enjoyed as much inclusion in the community in the possible, according to her desires and goals.

I could see from the time that I spent with Ivy that she had an active life in the community. People knew who she was and said hello to her on the street. She had work placements and did activities that she enjoyed. She had her own apartment and friends and seemed to genuinely enjoy her life…she still does.

My disabilities are very different than Ivy’s. But seeing that she had a full life that she enjoyed helped me to go I into rehab after my stroke knowing that even if I remained disabled, life didn’t have to be sitting in a room. I knew that even if I required support coming out of rehab, there would still be a life out there for me to live if I wanted it.  I was very grateful to have this reinforced constantly in the first rehabilitation hospital by a young nurse, just a couple of years older than me, who kind of took me under her her wing that summer and got me out on some evenings to movies, dinners with her friends and family, and even a trip to a casino. Everyone involved treated me like just another person along on the trip, like it was no big deal that I needed assistance to transfer in and out of vehicles and to use the stairs when there was no elevator and that I was a bit paranoid about having seizures.

My family has also had a terrific, “Nothing to stop you from trying…what can we do to help?” attitude (including my brother-in-law, who came into the family when all of this was just starting, and didn’t miss a step) right from the beginning. My sister was with me during my intake interview at the second rehabilitation centre, when one of the therapists said, “Did you leave the other hospital at all?”

Confused by the question, I said, “Well, yeah…I went out lots of times. They liked me to go home every weekend, and one of the nurses used to take me to the movies and stuff.”

My sister might not remember this, but she was annoyed. “What kind of a question was that?” she said to me later. “Of course you went out! Why wouldn’t you?”

I know now that not everyone in stroke rehab is lucky enough to have people willing to do those sort of  outings with them It was far above and beyond the call of duty for my nurse friend to do so. Thanks to my father’s experience with a family friend with multiple sclerosis who used a wheelchair and a scooter, and to my sister’s volunteer and employment experience with physically disabled people, I don’t think that the idea of me going on family outings in my wheelchair seemed especially daunting to them. Even friends that visited me in the hospitals or on my weekends at home didn’t seem at all nervous when I’d say, “Let’s go out let’s go out out OUT!!!” Once I could manage my own transfers, I was fine.

But not everyone is that comfortable with disabled people. It could have gone the other way.

Like I said, I was lucky.

Getting It Down on Paper (Or a Computer Screen)

Writing also helped me to come to terms with becoming disabled.

When I look back on my first writings about becoming disabled. one of the themes that came up a great deal was mourning. That doesn’t shock me, but today it fascinates me. I don’t have an answer to this…but I wonder if the mourning process that people that acquire disabilities go through, and that parents who learn that a child is going to be disabled go through, is due at least in part to the fact that society drills it into us that the social messaging around disability is that it’s tragic and that it inherently involves loss. If the messaging was different, would our reactions be different?

But those are relatively recent thoughts. Initially, I was doing a pretty good job at staying positive, and I understood that my life wasn’t over because I was disabled…but at the same time, I had already been feeling a little “behind” where I’d figured I’d be at that point in my life, and I needed to deal with some realities that were difficult to understand and that sometimes seemed really overwhelming.  I was monitored by a psychiatrist for a long time, and there were periods where I was very, very sad, to the point where people around me were very concerned. I did a bunch of thinking and talking that helped through it, and eventually I wrote about it.

And then, a couple of years later, I started this blog, and I (obviously) did a lot more writing. Many of my views on disability had changed when I started writing here. Many of them continued to change as I continued to write here and to interact with people with viewpoints to which I’d not been exposed before.

I think that there was a time when my disabilities made me feel powerless. It was around the time that I first started writing the book of personal essays that I published (now out of print, but I’m thinking about an ebook) that I was starting to take some power back. By the time I started writing here, I was ready to claim it.

I try to every day, even on the days that I don’t feel all that powerful. But those days are further and farther between now.

I’m disabled, and that’s fine.

 

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Commonwealth Games: Raising the Bar on Integration

commonwealth gamesSo I was going to post about the second prompt in Meriah Nicholl’s Summer Blog Hop Series Challenge over at With a Little Moxie (which puts me a month behind, lol), but I learned something about the Commonwealth Games that I’d like to talk about first.

I don’t usually watch televised sports, and in recent years that come to include the Olympics and the Commonwealth Games and any other Games…including Opening and Closing Ceremonies. So when my friend asked if I’d seen the para-athletes involved in the opening of the Commonwealth Games, alongside the non-disabled athletes, I had to say no, but I was genuinely sorry that I missed it. I’ve always wondered why the Paralympics are so set off from the actual Olympics, especially when it comes to the Opening and Closing Ceremonies. Disabled or not, all these athletes not all Olympians, so shouldn’t they all be involved in the Olympics Opening and Closing ceremonies?

So, very cool that in the Commonwealth games, they were.

Then my friend further blew my mind and said that in Commonwealth games, disabled and non-disabled athletes compete in the same Games, and that the Commonwealth Games were the first Games to do this.

This I needed to investigate. So I did.

Integrated Commonwealth Games

My friend is not in the habit of not being wrong, so no surprise, when I looked this up, that yes, in this year`s Commonwealth games there are 5 sports and 22 medal events in which the events for disabled athletes happen within the same Games as those for non-disabled athletes: athletics, swimming, powerlifting, lawn bowling, and track cycling. Integrated. No waiting for a separate Games for disabled athletes.

Granted, this is a small number of events. But the Games adds new events each year (track cycling is new this year). Also during these Commonwealth Games, intellectually disabled swimmers competed for the first time: Daniel Fox of Australia won won the Gold,  Mitchell Kilduff, also Australian, took the Silver, and Thomas Hader of England got the Bronze in the men’s 200 freestyle S14 para-swimming heat on July 26.

And apparently the Commonwealth Games has been considering integration for a while. The first demonstration para-sport events happened in 1994, and the Games became fully integrated in 2002.

Maybe everyone is laughing at me right now and saying, “Silly non-sports person. Everyone knows that the Commonwealth Games are integrated.” But I have to wonder if people do, because it seems to me that people would be at least talking about holding the Olympics to a higher standard of integration if they did. This feels like it should be a game-changer (no pun intended) to me.

It feels like we should be further along in acknowledging that everyone’s athletic dreams are valid, and shouldn’t be dismissed because someone is disabled.

It feels like Paralympians should be much closer than they are now to getting equal billing with non-disabled Olympians. But, not being a Paralympian, I don’t know if I can even legitimately say that. It’s always seemed to me like the media and the world treat the Paralympics like an afterthought, like something that’s just around to tune into after the main event is over, but perhaps I’m wrong. Maybe the people who compete in the Games don’t feel like it’s treated that way at all.  I just feel like the Commonwealth Games have the right idea, and wonder why the Olympics haven’t taken the same steps, especially since the Olympics wasn’t always like this. Both before and after the creation of the Paralympics, a number of disabled athletes have competed directly with non-disabled athletes in the Olympics (sorry, Wikipedia is the best I can do on this), and the Paralympic Games themselves are relatively new.

Really, what is there to prevent, in any Games, events for disabled athletes and non-disabled athletes happening alongside each other?

More Things “Olympic” and Integration

I’m particularly excited about the intellectually disabled men participating in the swimming events at the Commonwealth Games. It seems like it’s become awfully easy to  to pigeonhole intellectually disabled people into the Special Olympics which, while providing a valuable service, may not be a sporting environment that necessarily meets everyone’s goals. When I was involved with the movement, I was amazed by the athletic talent that I was seeing in some of the competitors. I wondered why, when they could could easily keep up on a team with non-disabled people, they weren’t participating on those teams?

Why was a segregated team their only option if they wanted to play sports?

The general answers that I got were that people like being on the Special Olympics teams with their friends, that they were comfortable, that it was place for them to feel good about themselves and a good way to learn and practice social skills and lessons about sportsmanship without the pressure of a more conventional league or team. All of which are true, so it’s a great thing that the Special Olympics teams are around for those that prefer that sort of environment…and it’s been gratifying and comforting to see that all of the Special Olympics teams with which I’ve been involved have had amazing coaches and volunteers who have been truly committed to making sure that all the team members get as much out of the team experience as possible, which is fantastic.

But aren’t we in the business of giving people options and trying to break down barriers? I don’t believe in pushing people into situations where they’re not comfortable, but I also don’t like the idea that non-disabled people play with non-disabled people and disabled people play with disabled people.

Kudos and thank you to the Special Olympics movement for getting us this far, to the point where it’s accepted and recognized that intellectually disabled people deserve the chance to be involved in sports and, that it’s given the world the chance to see how much they benefit from the experience. But you don’t get to the Commonwealth Games through Special Olympics (at least I don’t think you do). Shouldn’t the Special Olympics experience be now one of the options for team sports for disabled people, instead of *the* option?

After all, intellectually disabled athletes are now being integrated into the swimming events at the Commonwealth Games, as  disabled athletes into the games in general.

Bottom line: The bar has been raised. Your move, rest of the sporting world.

By the way, here’s some other stuff that happened last week

1. In America, the UN’s Convention for the Rights of Persons with Disabilities passed a Senate Sub-Subcommittee vote, and its ratification will be debated in the larger Senate. There’s been much resistance to ratifying this UN treaty, despite the fact that 146 countries have already done so. The concerns, all on the Republican side, are that ratifying the treaty gives the UN too much power over families of disabled children, particularly those that are home-schooled. Please let Senators know that you’d like to see the CRPD ratified!

2. The Americans with Disabilities Act turned 26!  How has the ADA helped you?

3. Traumatic Brain Injury activist Cheryl Green and I had an awesome conversation that she’ll be making into a podcast…I’ll let you know when and where you can hear it! Find out more about Cheryl here.

 

 

 

 

 

 

 

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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.

Friends

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.”

Activist

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.

Family

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. :)

Cheers,

Sarah

 

 

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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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