Girl With The Cane

I think I’ve finally found a blog subscription tool that’s going to work properly!

However, for those of you who were subscribers until the other tool, you may no longer receive the blog by email. I’d hate to lose you as subscribers, so please subscribe again using the new tool.

Hopefully blog subscriptions will no longer be an issue…please let me know if you have any difficulties.

As I’ve said before in this space, I blog about the welfare benefit reform and the austerity measures in Britain because, as a Canadian citizen, they deeply concern me.  I worry about what’s going to happen to friends in Britain who have disabilities and rely on benefits like the Disability Living Allowance to help with the costs of the specialized equipment and attendant care that they need to continue to live in their homes. I also worry about the anti-disability rhetoric surrounding welfare benefit reform, because I hear it in Canada and the US, too. I’ve wondered if one of those countries will be next to make disastrous cuts to disability supports.

Disability Living Allowance Cuts

The Disability Living Allowance cuts and the anti-disability rhetoric reached an all-time high in Britain this week. On Monday, 500 000 people (1in 5 claimants) have started to live in fear of having their Disability Living Allowance cut off, including veterans. They may not be eligible for the stripped-down benefits program that will eventually replace the Disability Living Allowance, the Personal Independence Payments.  All people on Disability Living Allowance will be reevaluated before seeing if will receive Personal Independence Payments, as one of Secretary for Ministry of Works and Pensions Iain Duncan Smith’s problems with the system is that people are given “lifetime awards” for Disability Living Allowance. and never reevaluated, allowing them to “fester”.  He blames this as one of the reasons that the number of Disability Living Allowance benefits claimants has risen 30% in the “past few years”.

http://www.guardian.co.uk/politics/2012/may/14/disability-benefits-slashed-half-million

Amelia Gentleman of “The Guardian” reports that disability advocacy groups believe that the 30% rise is for different reasons, and points to remarks (not made in the article, but that I have I’ve read before) that Smith Duncan’s changes are to eliminate benefit fraud. The British government itself acknowledges that Disability Living Allowance Fraud is at 0.5, so substantially cutting or eliminating the benefits of 30% of the claimants seems excessive.

http://www.guardian.co.uk/society/2012/may/14/disability-living-allowance-reform-analysis?INTCMP=SRCH

Anti-Disability Rhetoric

However, if you look at articles like this, you can see where people might get the idea that people with disabilities are just vindictive bullies out to get everything they can from whoever they can.  And that if you look like a disability, you might just be pretending to get off work:

http://blogs.telegraph.co.uk/news/cristinaodone/100157702/iain-duncan-smith-must-not-give-in-to-disability-bullies/

A couple of notes on Odones’ article:

• Those PETA-esque protest tactics (the fake blood, etc.) have apparently not been used by Hardest Hit since the ’90s.
• What is Odones’ definition of “fraud”? Does it include an alcoholic or a drug addict? If so, is it going to include a person who has committed a crime while in a manic state? When did disability become about morality and who made Odone the judge and jury?
• As far as I’m concerned, if you want to chain your wheelchair to public property, it’s as legitimate a form of protest as any. It’s not “bullying”, and it certainly doesn’t make you a member “powerful and extremist lobby”.

And if Christine Odone has witnessed people with disabilities “fighting dirty” – it’s because they’ve had to.  Because no one else will listen otherwise, and because it’s our independence…our lives…at stake. She would fight too.

Thank you to Sue and Kali and all the people using so many of their spoons to work so hard against what’s happening in Britain. You all inspire me.

In a few disability blogs and Twitter “tweets” now, I’ve seen references to spoons: using or spending spoons, not having enough spoons to do something, and how many spoons a given a given activity uses. I just assumed it was some of disability theory with which I was unfamiliar, and I kept forgetting to look it up. Yesterday I remembered, and my research led me to Christine Miserandino’s Spoon Theory.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

The Basics of Spoon Theory

Miserandino developed Spoon Theory as a way to explain to her best friend how if felt to have lupus. The premise is that people start the day with spoons, and as they perform their tasks of daily living, spoons get taken away.

A person without disabilities or illness may start each day with an unlimited number of spoons, because their bodies are healthy and there’s nothing to stop them (save the usual limits of what the human body can do and the circumstances imposed on them by others) from them getting done what they want to in a day.

A person with disabilities or illness, because of the physical challenges she faces, may only get ten spoons to get everything done in a day. Depending on her disability, six of them could be gone just getting ready to get out the door to a doctor’s appointment. She may be able to borrow against some spoons for the next day, to be sure that she finishes the appointment, but then she might really need to rest the next day.

It’s an interesting way of looking at things. I really urge you to read Masarandino’s essay in full.

Looking at Spoon Theory – Where Do You Spend Your Spoons?

Looking back over the course of my recovery, I can definitely see the moments where I’ve had fewer spoons to spend than the average person. I think that right now I try to live like I have unlimited spoons, and I’m slowly becoming unconvinced of the wisdom of that.

My left leg and arm are much more mobile than they used to be, granted, but they’re still heavier to move than my right leg. I should probably be getting more rest than I do.

I’m choosing to spend most of my spoons  on trying to write and get my business launched, and on social interaction (which I don’t get a lot of and know I need more of).  And I work pretty hard. And I’m pretty hard on myself when other things fall by the wayside as all of this happens.

There’s other stuff, but it’s boring and doesn’t need to be shared.

My point is, maybe my spoons still just aren’t unlimited…as much as I’d like them to be.

I’ll have to think about this some more. Read Christine Miserandino’s Spoon Theory essay.  Here’s the link again:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Image credit: songbird839 / 123RF Stock Photo

This week, I was introduced to a interesting concept by tumblr bloggers thoughts_of_nothing and and gimpunk some other tumblr bloggers with disabilities about which I’ve never heard: “inspiration porn”. It all focused around this picture, which I’m sure many readers have come across if they’ve spent any time on Facebook or Pinterest:

Heck, it was on one of Running Steps’ Pinterest boards when I went to check. I’ve since removed it.  It had just never occurred to me that I should find it insulting – but I should have.  I’m going to be evaluating what I put up on the Pinterest boards much more closely from now on, to see if the pins fall into that “inspiration porn” category.

“Inspiration Porn”: Is the Label Fair? The Case Against

It’s not that Scott Hamilton hasn’t accomplished amazing things. And the value of that particular piece of photography for people with disabilities is that it encourages those who may have the resources to take life by the horns, as Hamilton did, but are letting “I can’t, because I have a disability” hold them back to get back out there and start saying, “I can,” again.

“Inspiration Porn” Is the Label Fair? The Case For

Not everyone with disabilities has the resources and supports that Scott Hamilton had/has to get out there and make their dreams a reality. And for those that are in that boat – sometimes a positive attitude just isn’t enough. A positive attitude isn’t stopping the British government from people whose disabilities are far too severe to allow them to work from having their benefits cut off, forcing them to look for jobs that they have no hope of getting when they are in such ill health. Closer to home (for me), cuts to the Ontario Disability Support Program make accessing its Income support component significantly and increasingly difficult for new applicants each year, and cuts to both the Income Support and Employment Support programs make it more and more difficult for people who are on the program to move off of it.

All of this as the unemployment rate for people with disabilities in the United States edges toward almost twice the rate for people without disabilities, and as New York City continues to put up stink about making even more than 1% of its taxis accessible.

Given these realities, slogans like, “The only disability is a bad attitude” are almost an affront. “Inspiration porn” only makes people with disabilities who are often trying very hard to cope with issues like chronic physical/mental/emotional pain, constant hospitalizations, fears about where the money to pay for housing/food/medical bills/their family’s needs is coming from (whether it’s because of unemployment or underemployment or income support cuts) feel badly because they can’t muster the support, strength, or enthusiasm to get out there and start living their dreams as people with disabilities.

So, is the “inspiration porn” label fair? Unfair? Somewhere in-between? I think I may need to think about it a bit more. It’s certainly an attention-getter, and it’s probably going to make my blog show up in more porn-related searches than usual, but I think I’ll let you decide from here.

Before I Get Attacked

I don’t think any of that means that Scott Hamilton should stop doing what he does. It’s not his fault that people are struggling. And, like I said, I think his message has a place. Not just for people with disabilities, but for everyone. Regardless of your life circumstances, a bad attitude will get *anyone* stuck like nothing else can.

But I do understand why some people with disabilities take have adopted the phrase “inspiration porn” for these kinds of images, and why it hits them particularly hard.

I need to think about this, and write some more about it. Have a great weekend, everyone.

thoughts_of_nothing’s blog about “inspiration porn”: http://thoughts-of-nothing.tumblr.com/post/22192050450/blogging-against-disablism-day

If you’ve been watching any of my social media stuff, you know that I’ve been busy doing the “BADD Tour” – reading and commenting on “Blogging Against Disablism Day” posts (see badge on front page). They’ve given me so much to think about and and so many things on which I want to blog. But today I want to blog on something that’s been lurking in my head since the weekend: how I’m biased, and why it means that I *shouldn’t* blog on some things. Especially Ricky Gervais.

How I Decide on Blog Topics

I do it a number of ways:

• Sometimes I just blog about personal experience.
• I have Google alerts set up for “disabilities” and other disability-related terms. Often the alerts bring me news stories or updates on current events.
• I read blogs by other disability advocates and I subscribe to the ones I really like.
• I read a few well-respected disability ezines.
• I keep an eye on my Twitter feed for links to news stories and blogs that look interesting.  I have a lot of great Twitter contacts who post a great deal of useful information.

Most of the time this all works fine. I know that my writing isn’t up the highest journalistic standards, and that sometimes both sides of the story aren’t fully told – but I try to acknowledge that there always are two sides to a story. But I don’t claim to be a journalist. I definitely know that I’m not. I know that my experiences make me too biased to say I’m totally objective with what I write here, and I’m okay with that. Mostly.

It wasn’t until over the weekend, when I started looking for a place to watch “The Undateables” online, and “Derek”, the newest television series by Ricky Gervais, that I realized that even I can only take that so far.

Good Ol’Ricky Gervais

I did another post about Ricky Gervais and “Derek”, based on what I’d heard of it so far. http://www.girlwiththecane.com/derek-noakes/. I came to the conclusion that I might be unfairly biased toward the show on the basis on how Ricky Gervais had handled the “mong” incident on Twitter last year.

When I put the video post on YouTube, I took a beating for, among other things commenting on the show without seeing it. So, I’ve been trying to find a way to view a whole episode of the show online (difficult, as I can’t view Britain’s Channel 4 content from overseas, and there doesn’t appear to be a way view it in North America online that I can find, except for some brief clips). But, as I searched for a way this weekend, I suddenly realized that it wouldn’t mattered. I’ve heard so much about Derek Noakes, the character that Ricky Gervais plays, resembles somebody with an intellectual disability (Comedian Stewart Lee even said that the character resembles someone with Down’s Syndrome) that I’d be looking for the ways in which that’s true. I’d be looking for ways in which the show is mocking people with disabilities. I can’t trust myself to watch in an even remotely objective manner.

Same with “The Undateables”, which I’d also planned to view. I’ve just heard too much about how offensive it is to people with disabilities. I would be looking for it, so I could jump on it.

Maybe I just need to stay away from commenting on the entertainment world and people with disabilities, or at least aspects of it. I will have to think on it. If something comes up with Ricky Gervais again, perhaps Nicky Clark would do a guest post. A fabulous disability advocate, ahe has talked with Ricky Gervais at length about disability issues, and has a great deal of respect for him.

So…no worries, Ricky Gervais. I just can’t sort my feelings out enough about you to be fair, so I’m going to step back for now. But I’m still going to be watching, so you be fair too.

More about “Derek”: http://www.telegraph.co.uk/culture/tvandradio/9200872/Ricky-Gervais-in-Derek-Channel-4-Review.html

More about “The Undateables”: http://www.telegraph.co.uk/culture/tvandradio/9183670/The-Undateables-Channel-4-review.html

Recently, I got a ride home from an event with the woman who taught the adult ballet class in town a few years back. It was a very small class. There were three of us, including me, and then the instructor, Kate. We met for forty-five minutes on Saturday mornings to do relatively simple barre exercises: pliés, and tendus, and frappés, and battements, and several other exercises that I’d forgotten from the ballet training of my pre-high school years. It was all very relaxed, with lots of laughing. There were moments where my right arm would stretch in second position at  the barre and for a brief, wonderful moment, I’d actually feel like a just a dancer again, and not someone giving everyone else a first-hand look into ballet with disabilities.

I gave up the classes when a friend became very ill and I needed to have Saturdays open in case there was an opportunity to travel to the city to visit him. I missed the classes, though. There was a tendu combination that I could never get, that haunted me. Sometimes, when I’d wait for rides outside my apartment building, I’d put my hand up against the wall and practice it. I kept watching Kate’s ballet school schedule to see if she was offering the class, but I never saw it.

So I was very happy to hear from her in the car that day that she actually does keep it running. She just doesn’t advertise it. The same two women come, and she invited me back. I’ve just finished my second week.

Sarah and Ballet with Disabilities

I really liked that class, and still do, because I’m not a person with disabilities when I’m in it. Kate demonstrates what we’re going to do, (“Because we’re her Alzheimer’s class,” my classmate Helen jokes. “It’s all brand new every week!”) and then leaves it up to me to modify the exercise if I have to, in whatever way I have to. Which is awesome, because:

• My left foot only points very minimally
• If I’m concentrating on moving my left side, I have *no* turn-out. I’m lucky if I can get my left foot back into proper position if I lift it off the floor
• Sometimes I forget to move my left arm
• Sometimes I have to face the barre and grab it with both hands to do some exercises, or I’ll fall over.

Nobody cares that when I do the exercises on my right side, my foot arches nicely and my arm is pretty and that when I do them on my left side…I’m just a mess.  Or that I can’t do a rise, or a grande plié.  And they giggled with me when, after a particular difficult combination, I said,

“I was saying all the instructions in my head along with you, but apparently my foot decided that I could do that all I wanted, but it was just going to sit there in the air.”

(That was was a *tad* worrying, by the way…it felt like my foot was so confused by what was being asked of it, that it just wasn’t even going to try to keep up, if that makes sense.)

But that’s not the point. The point is that at the beginning of my stroke rehabilitation process, I never would have dreamed that I could feel so comfortable in a highly physical environment like a ballet class. And it’s got nothing to do with my abilities – it’s got to do with the attitudes of the people around me.

True inclusion hasn’t got anything to do with ramps and elevators and accommodations of any sort – it has to do with attitudes.

Many of the “Blogging Against Disablism” posts make the same observation – click on the badge on my homepage to read the BADD 2012 posts.

And speaking of ballet with disabilities…it may not be classic ballet, but I dare you not to be amazed by these two young people…

http://spluch.blogspot.ca/2007/12/disabled-dancers-dazzling-ballet.html

P.S. If you’re going to be staying in the New York City area any time soon and you’re looking for a hotel with amazingly accessible rooms, check out the new “Best” on the “Accessibility Bests and Worsts” page…

So, my friend Geoff (name changed) and I have been having a Facebook debate on the Rabbi Boteach blog on why God allows children to be born with disabilities. Here’s the blog in question:

http://www.huffingtonpost.com/rabbi-shmuley-boteach/why-does-gd-allow-children-to-be-born-with-disabilities_b_1464556.html

Geoff and I often debate American politics. You’d expect that it would come to blows more often than it does, him being a staunch Conservative and me being a bleeding heart Liberal. However, we find that often our beliefs match, more or less, on the basics of many things.  How we’ve arrived at those beliefs is often a different story.

We debated the Rabbi Boteach blog the way we do American politics – calmly and respectfully (well, we debate that way most of the time, anyway). And, as usual, I think each of us made the other do some thinking.

Debating Rabbi Boteach

Geoff said that he couldn’t understand why I had problem with doctors working to cure disabilities. I don’t. I’m not against researchers working to find cures for conditions that cause disabilities or interventions that improve quality of life.  I do have a problem with the blanket assumption in the Rabbi Boteach blog that disability = suffering, and therefore must be eliminated. Certainly some forms of disability are very painful and very isolating and cause a great deal of suffering…but I’m not suffering. My friend Martyn, who has spinal muscular atrophy, uses a wheelchair, and can’t lift much more than a 1-litre bottle is having the time of his life doing humanitarian work in Spain right now. There are plenty of people who have severe hearing impairments and reject the cochlear implant and any improvement it could offer, for various reasons.

http://www.guardian.co.uk/commentisfree/2011/aug/05/deaf-people-cochlear-implants

“The idea that difference must always equal suffering and a yearning to be “normal” is ablist thinking,” I said to Geoff, which he appeared to understand. But he was concerned that I misunderstood the Rabbi’s desire that researchers find cures with a desire to *force* cures on people afflicted with disabilities.

I do think I came away from the Rabbi’s blog with that impression, but I really had to think about why. I think it was his use of the word “purge” when he was talking about Down’s Syndrome.  ”Purge” is such an emotionally loaded word for me that that seeing it used in relation to Down’s Syndrome had really set me off, quite frankly. In my world, you purge to get rid of things that disgust you, that you don’t want near you, that you want no part in your life. I’ve never felt that way about Down’s Syndrome or anyone in my life who’s had it. I’d rather “purge” the attitudes that make my friends with Down’s Syndrome or any other disability feel excluded, unsafe, or just generally like second-class citizens in their own towns, states/provinces, and countries.

But Geoff always encourages me to read carefully and monitor whether my emotions are getting the better of me when I’m reading, lest I miss the whole story.  I went back and read the Rabbi Boteach blog again and saw Geoff’s point that Rabbi Boteach was answering the question about children and disabilities from several vantage point: theologian, counselor to parents who’d just found out that their child would be born with Down’s Syndrome, and as a refuter to the argument about children with disabilities being advanced souls in sinless bodies. He’d always came back to the idea that children with disabilities are precious and worthy of life, and he eventually hit the points on which he and I agreed: That children with disabilities are no more or less “divine” than any other children, and that we need to find ways to rally both natural and agency supports around children with disabilities and their families to give them as fulfilling a life as possible.

And for someone that believes those things and is willing to work for them…I can overlook the other stuff that didn’t sit quite right. I apologize to Rabbi Boteach for any of my knee-jerk reactions to his wording that might have caused me to misunderstand the rest of his message.

And thanks, Geoff, for helping me get on track again.

This is just heartbreaking.

http://benefitscroungingscum.blogspot.co.uk/2012/05/do-you-know-what-youre-asking-badd.html

I generally make it a policy to stay away from religion on this blog. But I’m going to make an exception today to address Rabbi Boteach’s recent blog on the “Huffington Post” website about Judaism’s position on why children are born with intellectual disabilities (or mental disabilities, as he says).

http://www.huffingtonpost.com/rabbi-shmuley-boteach/why-does-gd-allow-children-to-be-born-with-disabilities_b_1464556.html?ref=religion

What I Can and Can’t Address about Rabbi Shmuley Boteach’s Argument

I’m not Jewish, nor do I have an academic background in Judaism. I took Introduction to Judaism in university. It was very interesting. I enjoyed it. However, I’m in no way qualified to argue the theology behind Rabbi Boteach’s argument, nor would I want to. He’s entitled to believe what he wants.

However, I was disturbed by some of the real-world implications of his theological views. This isn’t a new experience for me. Many religions have theological views that, in practice, leave me disturbed. I figure that I can talk about that.

What I Like About Rabbi Boteach

Rabbi Boteach is responding, with his blog, to another Jewish scholar’s argument that children with intellectual disabilities are highly evolved souls. God has made it impossible to sin by putting them in them in their disabled bodies, making them innocent and worthy of our reverence. Rabbi Boteach sees this attitude as “justifying” the “suffering” of the ultimate in innocent children, and therefore wrong. Since Judaism works to eliminate suffering, he argues, it’s wrong to pretend that children with disabilities have a “lofty or divine purpose.”

I agree. Children with disabilities face different challenges and may different ways of expressing their gifts than children without disabilities, but there’s nothing about them that makes them any “better” or “worse” than any other child.
Rabbi Boteach and I also agree that a comprehensive system of supports, both natural and agency-based, is vital if people with disabilities are to lead fulfilling lives. Good on him. However…

Rabbi Boteach and I Disagree…

Rabbi Boteach can’t seem to get away from this idea that people with intellectual disabilities are innocent children that will never grow up. I think that this stereotype is particularly damaging for people with intellectual disabilities. They *do* become adults, and we don’t do them any favours when we treat them like they’re children whose innocence makes them unable to handle learning about how the world works. In fact, that can make them much more vulnerable to all kinds of abuse.

There’s also an uncomfortable (for me, at least) slant towards “If it looks different, we should “cure” it” that runs through the whole article. Yes, Down’s Syndrome has its own set of challenges for a child and for the family supporting the child. But many, many people with Down’s Syndrome grow up to live happy, healthy lives – as do people with various disorders on the autism spectrum, cerebral palsy, spina bifida, etcetera. The problem isn’t that these people need a “cure”. It’s assumptions like, “They *must* be suffering, so they must *want* a cure!” that bother me, assumptions about what the people with the conditions feel, and about what the families that support them feel. And the message through the article of children with disabilities having “life more infinitely precious than any explanation” is difficult to reconcile with “But we’d change a huge part of them if we could.”

I don’t doubt Rabbi Boteach’s good intentions with his article. I think that he actually probably treats people with disabilities and their families with a great deal of respect and compassion. I just had a bit of trouble wrapping my head around this bit of writing. If it’s clearer to someone else, and you think that I’ve misinterpreted, please leave me a comment.

I don’t often blog on Tuesdays. But today is Blogging Against Disablism Day, and I’ve wanted to participate ever since I started this blog.

What is Disablism?

Disablism is discrimination based on disability. I’ve faced a bit of it, but overall I’ve been very lucky. I know that many people go through a lot worse than I do, and don’t feel as comfortable as I do standing up for themselves when it does happen. I’ve also been lucky to have a family to stand up for me when I’ve been unable to.

I’ve been working with people with disabilities since I was 15 years old, and blatant disablism has always been infuriating. However, it’s the quieter forms that are more insidious and that don’t get nearly as much attention.

The Disablism of Overprotection

For example…we are really reluctant to let people with disabilities (especially intellectual disabilities) make mistakes.

I once worked with a family where a young adult female with an intellectual disability really wanted to move into her own place. Her parents were very opposed to the idea. They were concerned that she’d made bad decisions about men in particular, and get herself into a bad situation.

I was willing to concede that she didn’t have particularly good judgement when it came to men. But my record wasn’t stellar, either. In fact, every one of my women friends that I could think of had one or more relationship skeletons that came out at least partly out of choices on her part that she thought were fine at the time, but that she really regretted later.

Of course we’d continue to make relationship safety skills part of the preparatory training for moving out. But was it really fair to say “No, you can’t move out,” because she might make a dating mistake? A budgeting mistake? A cooking mistake? I wouldn’t be living by myself if we held people without disabilities to those sorts of standards…would you?

I don’t advocate deliberately putting people in dangerous situations or situations that they can’t handle in order to prove a point. And I understand the impulse to want to protect a loved one with a disability from situations where they might experience failure or hurt feelings or potential danger. But it *is* a form of disablism to deny people chances to learn and grow and discern just what they’re capable of, even if that means experiencing failure or disappointment.

A well-rounded person knows how to deal with failure and disappointment. You can’t learn those skills if you’ve never been allowed to experience either.

Let’s reduce disablism by allowing people with disabilities to have a fully human experience, and all the associated emotions. It’s often difficult enough to have to live with disabilities without the overprotection of others on top.

More about Blogging Against Disablism:  http://blobolobolob.blogspot.ca/2012/05/blogging-against-disablism-day-2012.html