Thursday, 31 July 2014

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.


Monday, 28 July 2014

Commonwealth Games: Raising the Bar on Integration

So 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.

Monday, 21 July 2014

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

I'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 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.

Sunday, 13 July 2014

On Faith and Intellectually Disabled People: Jesus Saves

I 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.

Thursday, 3 July 2014

Disability Visibility Project Underway

In 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.