Writing Process Blog Hop

writingThis is my response to a Writing Process Blog Hop that came to me via Andrew Pulrang of Disability Thinking.

Yay blog hops! Good times. Thanks, Andrew!

What Am I Working On?

Obviously, I’m blogging…probably not as much as I should be, but I’m working on it. I’m also trying to get some more freelance work, so I’ve been focusing on that as well.

But I’m also feeling like it’s time for a follow-up for the small book of personal essays that I wrote in 2007, about my experience of having a stroke. It’s out of print, so don’t ask how you can get it, lol. But if the essays aren’t included in this new book (because my first book was that small), I might just make it an ebook so that anyone who might be interested can read it if they’d like.

I feel like it’s time for a follow-up book because, reading my first book, I realize that I’ve learned more than 2007 me could ever have thought possible about disability. I read it now, and I’m kind of shocked at the way that I used to look at things. Despite being around disabled people for over a decade when I’d written it, I really didn’t know much about ableism beyond its very obvious manifestations (and couldn’t tell you that discrimination against disabled people is called “ableism”), or disability pride, or cure versus acceptance…

I think that there are signs in my first book of my activist voice starting to emerge, but it definitely wasn’t talking loudly. It’s time for a book where it’s out there.

So that’s in the works. It’ll probably have some of my blog posts in it.

Also, I’m between day jobs right now, so I’m looking for work. That’s challenging for a number of reasons in my area, and I’m hoping that something will come up soon.

How Does My Work Differ From Others in My Genre?

I think that I’m different because a lot of my blog posts end up being like news stories. They didn’t start out that way – when I was producing a post a day, it was mostly my opinions, and it was easy to put a couple a week, if not one a day. Then I started commenting on news stories and the issues behind them, and I wanted to provide background on the story, and then make sure that background information was from accurate sources with links to it, and then I’d say my opinion – and that cut down on how much I could produce, because those blog posts are long and they take time to do. But I actually like writing long pieces. I loved writing essays in high school and university.

Dave Hingsburger has been blogging once a day for years and never seems to run out of interesting things to talk about. Sometimes I wish my blogging style was more like that.

Why Do I Write What I Do?

I remember being in elementary school and seeing the kids in the segregated special education class out on the playground at recess and wondering why no one wanted to play with them. I got involved in the disability services sector when I was 15, decided at 21 that I wanted to get some official training to make disability work my career, and then had a stroke and became disabled myself. After getting that training and living and working as a disabled person, I decided that I had some things that I wanted to say (that I hadn’t said in my book), about disabled people and society, and discrimination, and accessibility, and…everything that I write about. So I started a blog.

Writing is one of the few things that I’m really good at, so I use it to draw peoples’ attention to these disability-related issues that are important to me.

How Does My Writing Process Work?

I get ideas from Twitter, Facebook, and a Google alert that I’ve set up for “disability”. If there’s a disability story that’s big news in the community and it’s something applicable to my blog (like when the Judge Rotenberg Centre talked to the FDA advisory committee, for example), I’m very likely to blog about it.

Some stories that I blog about may not seem directly applicable to disability, but I may do so anyway because I’m interested in the implications that the story may have for disabled people. That’s why a lot of stories were showing up in the blog for a while about abortion and misinformation about birth control. Disabled women (intellectually disabled women in particular) aren’t having their voices heard in this debate, and are hurt by misinformation about safe sexuality. So I write about those stories. Same with issues like the voting process – we don’t generally hear about how these issues affect disabled people, but they do, in specific ways that need to be explored. So I believe that it’s appropriate to write about developments around these issues in a disability blog.

Many people in the stroke blog community consider me a stroke blogger, but I always wonder if they’re curious about the fact that I rarely post about my stroke, or stroke in general. I’m not sure why this is.

So that’s me and writing. This is a Blog Hop and I’m tagging the following disability bloggers: Elsa S. Henry at Feminist Sonar, Linda Atwell at OutOneEar and Rhiann Johns at My Brain Lesion and Me.

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Transition Planning Resource from AbilityPath – “The Journey to Life After High School: A Road Map for Parents of Children with Special Needs”

the journey to life after high schoolI spent some time last week reading AbilityPath’s “The Journey to Life after High School: A Road Map for Parents of Children with Special Needs”, which is a transition planning resource guide for families. I did transition planning for intellectually disabled students getting close to high school graduation for 5 years.

I knew very little about transition planning going into the job. I’d been involved with the developmental services sector for a decade and done the Developmental Services Worker diploma program, so I wasn’t unqualified. However, I’d had no idea idea how complicated the process of assisting students and their families plan for post-high school life could get. I downloaded a ton of transition planning materials from the Internet and read all of it. I printed the very useful stuff out – it’s still in my files. I got good at my job. I loved that job.

One of the main things that I took away from those five years is that effective transition planning for disabled students is extremely important. The last couple of years in particular before high school graduation bring up fundamental questions for students and families:

  • What will the young person’s day look like without school to go to? What kind of adjustments does it mean for the family?
  • What kind of supports will the young person need? How are they accessed?
  • What kind of supports are lost when school ends, and who can provide them?
  • Most importantly: What the student want for his or her life, and how can that be put in place?

The stronger the plan, the stronger the young person’s foundation for adulthood.

Given how strongly I feel about the importance of transition planning, I was really honoured to be asked to attend a press teleconference to launch “The Journey to Life after High School: A Road Map for Parents of Children with Special Needs”. This book is just what I would have been looking for when I was learning about transition planning, and I think it will be very useful for families.

Here’s what I liked in particular.

It’s Very Person-Centred

The individual should be at the centre of their plan, and the “The Journey to Life After High School” kept coming back to that, constantly emphasizing that the individual should be present at their planning meetings, their IEP meetings, meetings to arrange services, etc. This sounds like it should be a no-brainer, but it’s surprising how often individuals get pushed out the process, even though transition planning should be about his or her desires, hopes, and dreams for adult life. It can become very easy for the team involved in planning to start talking around and about the person. “The Journey to Life After High School” keeps talking about the individual as the most important part of the process.

It’s Thorough Without Being Overwhelming

When I first downloaded “The Journey to Life After High School” and saw that it was 80 pages long, I thought, “Wow, that’s hefty.” But 44 of those pages are contact information for national and state resources, and a thorough reference list. The remaining 36 pages thoroughly cover the spectrum of issues involved in transition planning: school and IEP issues, employment, residential options, medical planning, benefits, power of attorney, support networks, and estate planning. The guide uses case studies, including Miss Montana 2012 Alexis Wineman, the first autistic Miss America contestant.

It’s a lot of information, but it’s well-presented, and doesn’t become overwhelming. The writers have stayed away from jargon and kept the writing accessible. As I said, the section on legislation is about America laws pertaining to disability and education, of which I only have a passing knowledge, and I found the summaries interesting and easy to understand.

It Talks About Community-Based Options as Well as Agency-Based

It’s been my experience that when parents are first exploring options for adult life for their disabled child, they want to know about heavily-supervised day support programs, group home and other agency-based options, most often because they’ve been told that these are the only alternatives. “The Journey to Life After High School” talks about these options, but also thoroughly explores more community-based options for students with all types of disabilities. It gives very practical advice about how to evaluate which housing, employment, and education options may be most appropriate and secure the support that students need to thrive once they’ve chosen a given option, plus case studies.

It Recommends That Transition Planning Start Early

Ideally, I started my work with students when they were 17, assuming that most of them would stay in school until they were 21. For a variety of reasons, I only got the full four years with a small number of them, which was too bad. Effective transition planning takes time.

“The Journey to Life After High School” suggests that some aspects of transition planning begin in middle school. I like this idea. That may seem young, but it really isn’t too young for parents to start having periodic conversations with a young person about dreams for adult life – what kind of work he or she would like to do, where he or she would like to live, hobbies, relationships, etc. By the time the young person reaches 14, when “The Journey to Life After High School” suggests that transition planning begin in earnest, the student and family will have some ideas about the skills required to meet these goals that can be built into the Individualized Education Plan (IEP) and the student’s routine at school.

It’s Low-Pressure

Transition planning is very important, as I said, and it’s very easy for parents of disabled children to take it on as yet one more thing that causes them a great deal of stress. Reading through “The Journey to Life After High School”, I really liked its emphasis on the transition plan as a work-in-progress. Sometimes what the student and the panning team comes up with works nicely, sometimes things need to be changed (often for the simple reason that the individual changes his or her mind about something in the plan). A change in the plan doesn’t mean a failure on anyone’s part.

I also like the acknowledgement that this transition period is difficult for parents as well as students. I think that parents need to hear that. We can all appreciate why leaving the structure and predictability of school is difficult for students and why this transition period is challenging (very challenging, for some), but it’s also difficult for parents who may find themselves suddenly trying to adjust to playing a different role in the life of a young person who may have needed much more attention and care than other children in the family. Letting go can very difficult. I’ve seen this, and I was glad to see it acknowledged, because sometimes parents need supports during this process as well.

People need to go easy on themselves. For most families, this is uncharted territory. I think that using “The Journey to Life After High School” will contribute to making the whole process less of a pressure-cooker than parents anticipate.

“The Journey to Life After High School: Worth Reading for Families, Staff, and Educators

I really wish that all high schools had someone to help disabled students and their families through the transition planning process. Given the resources available right now, there sometimes wasn’t a lot I could do, but at least I could help with the application forms (often confusing), answer questions, and be an advocate and a listening ear.

In the absence of an actual person to go to learn about transition planning, “The Journey to Life after High School: A Road Map for Parents of Children with Special Needs” is a remarkable substitute.

Download a copy of “The Journey to Life after High School: A Road Map for Parents of Children with Special Needs” here.

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George Takei Apologizes for Posting Ableist Meme

ableistAs I talked about in my last entry, Star Trek star and Internet sensation George Takei has been taking a lot of heat for posting the ableist meme pictured right. A woman is standing up from her wheelchair to get a bottle of liquor off of a high shelf in a short, and the caption is “There Has Been a Miracle in the Alcohol Aisle”.

George Takei said himself that he didn’t expect the reaction that the meme generated. Disabled people were swift to point out, both on his Facebook page and in the blogosphere (myself included, obviously) that it not only gives an inaccurate picture of the physical capabilities of many wheelchair users, it also reinforces negative stereotypes of disabled people. However, he also said that we wouldn’t be taking the meme down and asked people who were upset by it to “take it down a notch”.

I really like George Takei, and was quite shocked by the way he dug in his heels on this one. I figured that a man who works so passionately to reduce racism and homophobia would just see, after reading the response the meme, that this was an abilism issue and act accordingly. I actually stopped following his page on Facebook, which wasn’t easy, because I really do like him.

Which I why I nearly missed this last night, so thank you, Robin, for pointing it out to me:

george takei

Very Classy, George Takei

This is so much different than the “I’m sorry your feelings were hurt” non-apologies that come from celebrities these days.  Thank you, George Takei. I am following your page again.

I did read some of the comments on his post though (because apparently I just needed to ruin a good moment, lol), and of the ones I read, the majority were that people that had not found the meme funny needed to get a sense of humour, that political correctness was ruining the country, “back before the thot police ran the world this would have been okay”, yada yada yada. I get tired of reading responses like this. I’m pretty good about laughing at myself, but I don’t get this insistence on how I’m the bad person if I don’t find something funny that’s personally insulting.

Hmm…maybe it’s time to tackle this subject again…

 

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Ableist Stuff All Over the Internet

Last week I came across four media pieces that were to varying degrees, ableist, or at least had terribly ableist comments. Stuff that really made me cringe.

Let’sget started with this.

New York Times Magazine: “The Kids Who Beat Autism”

This article was the most ableist of the four pieces, and it was painful to get through.

Phrases such as “overcoming autism” and “stopped being autistic” made me uncomfortable and suspicious, not just because they were being applied according to the diagnostic standards in the DSM (which, as we’ve seen with the DSM-V, change according to what clinicians think is most appropriate) but because I’ve heard too much about what autistic people experience to believe that it’s merely, as author Ruth Pawader states, “a constellation of behavioural symptoms”. Behavioural interventions may help autistic people to deal with some of the biological realities of autism, but just because someone has learned to “look” more neurotypical doesn’t mean that he or she isn’t autistic anymore. And frankly, the “cured” kids that I read about seemed to have so much pressure on them to become more “normal” and less “autistic” that I (and some of the commenters) wondered if looking at interventions with the aim of curing a child is something that’s particularly constructive…autism *is* a part of who a person is, and what does it say to them who they are as a person when people are aggressively trying to extinguish that part of them?

I’m not saying that I’m against interventions, especially in situations where children hurt themselves with their stims or are so frustrated by not being able to makes themselves understood that it’s obviously causing them high levels of stress, anxiety, or unhappiness. But there’s an ableist assumption in this article, echoed in the comments, that overcoming autism (or the appearance that it’s been overcome) would be the “optimal outcome” – that sort of ableist thinking needs challenged.

The New York Times – When Wheelchairs Are Cool

I was originally very unsure what I thought about this opinion piece, written by wheelchair use Brian Mattlin., about Justin Bieber’s recent trip to Disneyland in wheelchair. The word on it was that he’s hurt his knee and wanted to rest it, but speculation is that he did it to draw attention to himself and to take advantage of Disney’s policy of letting wheelchair users go to the front of the line for rides. (For the record, it’s much more difficult to get the pass that allows you to do this than it used to be, and there are far more restrictions on it.)

Unsure because Mattlin seemed okay with with people that don’t use wheelchairs using them, as long as they’re not in it for the benefits like line-jumping at amusement parks, and as long as they’re doing it with a sense of “joy and respect”:

“So go ahead and play disabled. As long as it’s done with joy and respect — not to tease or poke fun — I won’t be offended. Just don’t do it for the freebies, which are harder and harder to find these days anyway. Do it as you do anything else, because you think it’s cool.”

I don’t know how I feel about that. His opinion is based on his understanding of “crip culture” (which is different than mine, and I’m not saying that mine is the right one). Brian thinks that crip culture is about finding the fun in disability.

“Wheelchairs can be fun. Voice-recognition technology is a blast. Vans with automatic ramps are awesome. And don’t forget our coveted parking spaces. All of which help mitigate the bad stuff.”

That’s probably as constructive a way to look at it as any – finding joy in your situation, as opposed to my understanding of crip culture, which was more related to disability pride and activism (not that the two are necessarily mutual exclusive). However, it’s my sense of disability pride that’s a bit injured by the idea of non-disabled people using wheelchairs because they’re fun. Even in the early days after my stroke, when I had a burgeoning sense of disability pride, I didn’t consider being in a wheelchair fun. Not because there was anything wrong with it, but because I felt a bit shut out from the social experience using it.

But I’ll also defend Justin Bieber’s right to use one his Disneyland excursion, and most of the commenters didn’t seem to want to do that. We don’t know exactly what he did to his knee. Maybe he truly needed to rest it, and I take exception to the suggestion that if needed to do that, he should have stayed home that day. He has a right to go to Disneyland if he wants to, and just because he *can* walk doesn’t mean that it’s inappropriate for him to be using a wheelchair, granted that he has a knee injury. I *can* walk outside without my cane. But, as I learned last year after walking around the Toronto Zoo last year for a day without it, it really takes a toll on me. John Q Public seems to think it has the right to dictate when people have the right to be “wheelchair bound” or “confined to a wheelchair” (plenty of both those ableist gems in comments) and when they should be able to suck it up and walk.  It’s only because they’ve seen Bieber walking in the past that this is even an issue, indicating how binary people are about disability: people that can walk don’t ever use wheelchairs, because only paraplegics use wheelchairs.

Ableist thought, assumptions, presumptions, and a lot of anger over a young man going to the front of the ride lines that was going to do so anyway.

Speaking of assumptions and presumptions and ableist thought…

George Takei Takes on the Disability Community with an Ableist Meme

George Takei, Star Trek star, Internet sensation, and normally quite astute social justice advocate posted the following ableist meme on his Facebook page over the weekend:

ableist

Fans were not impressed. I’ve been following Takei for a long time, and I don’t think I ever seen such an outpouring of fan posts expressing their disappointment in him. And it wasn’t just that disabled people that argued that, given Takei’s record of standing against racism and homophobia, that he’d post a meme that’s so blatantly ableist and that reinforces negative stereotypes of disabled people. Again, a person standing up from a wheelchair is hardly a miracle, and there’s an implication that the woman is faking a disability for benefits until she gets to the liquor store (playing right into the “scrounger” narrative in the UK that has the government cutting disability services to the bone).

Takei told them to “take it down a notch” and didn’t apologize or remove the ableist meme, prompting another round of comments at how disappointed were in how he handled the whole business. I can’t say that I blame them.

Of course, there were plenty of people who agreed with Takei that folks were getting offended over nothing, and who got quite vulgar in expressing that opinion. But this is the internet, and it’s why you shouldn’t be like me and read the comments.

One more…

Gammy’s Story

I’m sure that some of you have heard about this story.

An as-yet-unnamed Australian couple paid a young woman in Thailand to be their surrogate, since surrogacy is illegal in Australia. She discovered that she would be having twins, and four months into the pregnancy discovered that one of them had Down Syndrome. The couple asked her to abort the child and she refused, saying that it was against her Buddhist beliefs.

When the children were born, the couple took the twin without Down Syndrome and went back to Australia, leaving the disabled baby with the surrogate, who already has several children of her own. As well as Down Syndrome, the baby, named Gammy by the surrogate, has heart issues and a lung infection.

The surrogate has agreed to raise Gammy, and donations from around the world have raised money for the medical care that he will need, but the entire case is so sad. The Australian couple may not have felt able to handle a child with special needs, and perhaps they were told that the baby was aborted, but they knew that this woman had no money, and they just walked away from their child presumably because it wasn’t perfect.

I understand that this is a complicated case. The surrogacy business is unregulated, so discussions about what happens in these cases don’t occur.  And babies with disabilities (particularly Down Syndrome) are aborted for a variety of reasons. I don’t like that women abort for this reason, but I’m never going to tell a woman that she can’t have an abortion, even if her reason for doing so makes me sad. It just seems so short-sighted to me, when, after all the focus on having a non-disabled child, things can happen in the delivery room or shortly after…or at any time in a child’s life…that could result in a disability even more “catastrophic” (phrase in one of the comments on jezebel.com, where I first read this story) than Down Syndrome. Lots of women commenting on jezebel.com talked about how they’d definitely abort if they found they were carrying a baby with a genetic abnormality, too. One commenter said that she’d feel judged by her friends if she didn’t abort in that circumstance. The fact that there’s still that knee-jerk fear of disability in a child just…stunned me, even though I know that many women do choose to abort babies with Down Syndrome.

These things…these ableist things…just catch me by surprise sometimes, is all.

It seems like there’s still a lot of work to do.

You can make a donation toward Gammy’s care here.

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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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