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Wednesday, 27 August 2014

Writing Process Blog Hop

Writing Process Blog Hop

This 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.

Monday, 18 August 2014

Transition Planning Resource from AbilityPath - "The Journey to LifeAfter High School: A Road Map for Parents of Children with SpecialNeeds"

I 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.

Thursday, 14 August 2014

George Takei Apologizes for Posting Ableist Meme

George Takei Apologizes for Posting Ableist Meme

As 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:

Text of George Takei's apology for putting up ableist meme. keyword: 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...

Monday, 4 August 2014

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:

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.

Friday, 1 August 2014

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!