Archive | May, 2012

Intellectual Developmental Disorder and the DSM-V

The deadline for public input on revised diagnostic criteria for autism in the DSM-V is June 15th. There’s been a lot of controversy on this, so be sure that you’re well-informed and that you voice your opinion about any of your concerns. See this blog post for a starting point on where to research what’s been going on with controversy:  http://www.girlwiththecane.com/diagnostic-criteria-for-autism/

Also bear in mind that there’s been controversy over the revised diagnostic criteria for mental retardation, starting with renaming it Intellectual Developmental Disorder.

Yes, “Mental Retardation” is Diagnostic Criteria

And bravo to the American Psychiatric Association for finally moving away from it in the DSM-V.  Services providers Canada and the US have been using the less emotionally-intellectual developmental disorderloaded “intellectual disability” for at least as long as I’ve been involved with developmental services, and the US government has recently made a commitment to use “intellectual disability” in its disability legislation. It’s going to be much easier to get people to stop using “retard” and “retarded” in reference to people with disabilities when there’s no clinical term with the word “retard” in it to give those slurs any false air of legitimacy. Like most things, however, this particular redefinition of diagnostic criteria isn’t that simple:

  • “Mental retardation” changes to “intellectual developmental disorder” (as I mentioned).
  • The criterion that the disability begin before age 18 disappears, replaced by one that the disability begin “during the developmental period”.
  • The IQ criterion, now 70 or under, becomes more flexible, shifting the focus more to  the individual’s level of adaptive functioning.

“Intellectual Developmental Disorder” Doesn’t Roll off the Tongue…

Advocates at organizations such as The Arc and the American Association on Intellectual and Developmental Disabilities fear the DSM-V’s use of “intellectual developmental disorder” and the departure from the more standard “intellectual disability” will confuse people. I do agree that this could potentially happen. However,  it’s not like the official diagnostic term hasn’t differed from the everyday language for years.  I have never in my career, unless I was speaking specifically in clinical terms regarding the official DSM diagnosis with a colleague who understood my context, spoken about “mental retardation” in my work. I use “intellectual disability” with the people I support, with their families, and, the overwhelming majority of the time, with colleagues.  I probably still will, unless a superior directed  me to use “intellectual developmental disorder”. I doubt I’ll be alone.

Now for the Famous “That Being Said…”

I’m fascinated by the “developmental” element in “intellectual developmental disorder”, particularly in light of the fact that there will be more flexibility around the IQ standard. A lot can happen to a child before age 18. They may not be born with a condition that traditionally causes an intellectual disability, but what if a traumatic brain injury caused by a car accident leaves a teen with the severe deficits in adaptive functioning that a teen with an intellectual disability might experience? Or impair ability to perform on an IQ test to the point where it looks as if the teen’s IQ has suffered a drop into the zone associated with intellectual developmental disorder? The developmental element provides a way to assist clinicians to differentiate between what is truly an  intellectual developmental disorder and what disabilities require a different diagnosis and perhaps more appropriate treatment and supports.

Because Diagnosis Determines Supports

For a long time, Ontario’s definition of developmental disability (often used interchangeably with “intellectual disability” in the province) was IQ-bound (as is the DSM-IV’s diagnostic criteria for mental retardation).  I’ve seen how this can make decisions tricky about who gets and doesn’t support within the developmental services sector, particularly for people with an IQ in the low 70s. People in this “borderline” zone got from services that they needed because of a couple of IQ points.

Watching how the IQ criterion sometimes prevented people from getting services that they need, creating more cracks through which people could fall, was very frustrating for me and for others in social services. Knowing that Ontario’s definition of developmental disability is now less IQ-bound and more skills-based is a relief. I was relieved the see the APA making a similar shift in its proposed diagnostic criteria for intellectual developmental disorder. Unfortunately, I haven’t been in a position to get any hard data about how that shift is working for people with developmental disabilities in Ontario, but the move does make intuitive sense to me.

The Bottom Line

I do have concerns:

  • I’d prefer that the APA stay away from the word “disorder”
  • I think that the developmental period in which a person needs to develop the signs of  an Intellectual Developmental Disorder in order to receive the diagnosis needs a description.
  •  I think that diagnosticians are going to want to know how much latitude they have with the IQ criterion, but I assume that they will receive information about that.
We’ll see how this goes.

Please submit any concerns on proposed redefinition for diagnostic criteria in the DSM-V before June 15:

Intellectual Developmental Disorder: http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=384

Autism Spectrum Disorder: http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=94

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My Brain AVM: May 29, 2000 – Open-Brain Surgery!

I had two surgeries to fix my brain AVM. One was the open-brain surgery, of open-brain surgerycourse, but the first was an embolization. People who have had an angiogram or angiography will be familiar with embolization. The doctor fed a wire through the artery in my thigh, up through my body into my brain. He used an adhesive attached to the wire to reduce the size of the AVM. That’s a very simplistic explanation, but it’s the gist of what happened.

I have to comment on this, because I still think it’s amazing. I’d never had surgery before or anaesthesia before.  The anaesthesiologist asked me to count backwards from 100, and suddenly I wasn’t awake – and then I was. It seemed like I had just closed my eyes. I wouldn’t learn until later that the surgery had taken four hours.

“Can we get this started?” I said, annoyed.

“It’s done,” said a nurse that I didn’t recognize. “You’re in the recovery room.”

I was stunned.

Bring on the Open-Brain Surgery!

I don’t remember much of the weekend that followed. I do remember being so convinced one night that I heard my dog’s toenails on the floor in my room that I called the nurse to ask who had let her in (more a testament to the drugs they’d given me than anything else). She assured that there was no dog in the room…but my family’s mutterings during altered states of consciousness in hospitals is a whole other blog post.

I do remember the night before I went in for my open-brain surgery, just a couple of days later. I was still in the hospital. I sat with my family. I called my friends on the pay phone.  I took a shower, since I didn’t know when I’d next get one after the open-brain surgery. I made sure that my dad knew where my letters to everyone were, in case something went wrong with the open-brain surgery. I did sleep, surprisingly.

And early in the morning, twelve years ago today, I waved to my dad and my sister as the nurses wheeled me away on a stretcher for open-brain surgery.

There wasn’t much prep. They only had to shave a little bit of my long hair, which was really nice, because I’d been psyching myself up to lose all of it. I thought that they just automatically shaved your head for open-brain surgery. I’d later cut my hair short, but I was happy to keep it for the moment.  In the operating room, I talked briefly with my neurosurgeon, Dr. Tymianski. The anaesthestiologist had me count back from one-hundred, and suddenly I wasn’t awake -

- and then I was. And I was annoyed – because there was a tube down my throat and a piece of plastic over my tongue, and no one would move it. You can read about that here: http://www.girlwiththecane.com/finger-spelling/

Sometimes things don’t happen quite the way we think they will.  Dr. Tymianski and his surgical team weren’t able to totally fix all of the AVM during the open-brain surgery. A piece had to be left, which later sealed itself off and is no longer an issue. A bleed in an area not far from the AVM site a couple of days after the open-brain surgery caused the stroke that wiped out my left side and so drastically changed the course of my life.

But I knew the risks. Dr. Tymianski told me that there was a 10% chance that the open-brain surgery would cause irreparable damage, and a 15% that it would cause damage that we could repair. That meant there was a 75% chance that nothing bad would happen. And I’d gotten through my first stroke with no damage, but statistically, if I left the AVM alone, I was going to have at least one more. Who knew damage the next one might cause?

So I played the odds and I hit that 10% that no one wanted me to hit. As my father said, “You can’t expect someone to put a Mixmaster in your head for 14 hours and come out totally unaffected.”

But he also said, “Just because your life turns out differently than you expected, doesn’t mean that it has to turn out worse.” And he was right. :)

Let’s all toast to that today: Just because life turns out differently than you expected, doesn’t mean that it has to turn out worse.

More about the Toronto Western AVM Clinic: http://www.uhn.ca/Clinics_&_Services/clinics/vascular_malformation.asp

 

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Did you Know…

…that Girl With The Cane is the blog for Running Steps?

Running Steps is a company that provides writing and disability awareness/advocacy services. Add us to your contacts for updates!

Website: http://www.runningsteps.ca

Facebook: http://www.facebook.com/RunningSteps

Email: admin@runningsteps.ca

Twitter: @runningsteps

Our head writer, Sarah Levis, is currently one of the bloggers for Accessible Clean Taxis (ACT) http://accessibletaxi.com/the-coalition/act-blog.html, and the voice of “Girl With The Cane”. She has also officially joined the Spartacus team in the UK to see what help she can offer to their cause. See the Running Steps website for a full résumé of her writing credentials.

Sarah is also available for writing and consulting work as Ontario moves toward its goal of full accessibility for people with disabilities. Keep watching “Girl With The Cane” and the “Running Steps” site for details, or contact Sarah for more information.

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The Medical Model of Disability and Civil Rights

Big thank you to William Peace over at http://badcripple.blogspot.ca/ for linking to and commenting on the National Disability Rights Network’s recently-released report, “Devaluing People with Disabilities”. I was not aware that the report was available, and I found it fascinating.civil rights I do worry, like William, that the people who read the report won’t be the ones that really need to read it, but I do like how thorough it is, how it frames the fight for disability rights as a civil rights issue, and that it uses the voices of self-advocates. Perhaps believers in the medical model of disability (especially people who support the use of the Ashley Treatment, discussed extensively in the report) will read it just out of curiosity, or a desire to justify what they believe, getting the report outside of the “preaching to the converted” circle.

“Devaluing People with Disabilities” uses the Ashley Treatment as a jumping-off point for discussion about disability rights as civil rights, illustrated specifically in the the ways in which the medical model of disability permeates ethics committees, hospitals and court systems.  Consequently, people with disabilities are, more often than anyone should be comfortable with, forced to undergo medical procedures (or have life-saving medical procedures, treatment, or even simple nutrition withheld) because of their disabilities.

The Ashley Treatment, the Medical Model, and Civil Rights

The Ashley Treatment refers to a number of surgeries and hormone treatments performed on a six-year-old girl with physical and intellectual disabilities back in 2006. Ashley’s parents, ostensibly to preserve her quality of life as much as possible, had her growth attentuated so that she’d always remain small. Doctors also gave her a hysterectomy and removed her breast buds, so that she’d not have to deal with menses or the sexualizing effect (minimizing, the parents said, her risk of being abused). The parents called Ashley their “pillow angel”, and justified their choices for her by saying that she didn’t have the cognitive capacity to recognize what had been done to her or what it meant she’d be missing.

The ultimate legal problem with the Ashley Treatment (and any medical treatment/lack of where parents, a doctor, or a court decides that a person is too “disabled” to make their own decisions about their bodies and what they choose to do/not do to them) is that it’s unconstitutional – hence the civil rights component.  It’s very much a civil rights issue, even though most people choose not to recognize it as one. There are cases, of course, where a person with a disability has a power of attorney for healthcare, but that’s very different than a doctor advising a family to remove nutrition when there’s no terminal disease, or not perform a life-saving surgery, because a person’s quality of life and prospect for “contribution to society” with their disabilities is so “low”.

The point is, we treat people with disabilities in very different ways when it comes to health care than we do people without disabilities. We would never think of violating the civil rights of a six-year-old without disabilities by removing the uterus and breast buds – why would one even consider such treatments? Yet, for one with disabilities, it was okay to alter her body in drastic and unnecessary ways, to deny her the chance to mature into a grown woman, and to take away her option to have children.

Kurt Decker, Executive Director of the National Disability Rights Network, puts it nicely in the introduction to “Devaluing People With Disabilities”:  “These conversations happen because the persons being considered are viewed as having little value as they are.  They are considered as not fully human, endowed with inalienable rights of liberty, privacy, and the right to be left alone – solely because they were born with a disability.”

If that’s not a civil rights issue, I don’t know what is.

Read “Devaluing People With Disabilities”, but be prepared – it will shock you. It should, at least.

http://www.disabilityrightswa.org/newsletter/drw-news/ashley-report-docs/Devaluing%20People%20with%20Disabilities%20final.pdf

William Peace’s thoughts on the report: http://www.blogger.com/comment.g?blogID=1556371561007953336&postID=1277439375401526973

More about the National Disability Rights Network: http://www.ndrn.org/

Image credit: cteconsulting / 123RF Stock Photo

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John Kerr: Benefits Cut, Fit to Work?

And so it begins in Britain. John Kerr of Dundee, Scotland, who is blind, deaf, eats via tube, and doesn’t communicate verbally will have his benefits cut on June 7th because the person who filled out forms on his behalf that the Department of Works John Kerrand Pensions required made an error.  I don’t know what forms, or the nature of the error; media coverage on this over the Internet is scarce. According to disability blogger and advocate Nicky Clark, however, the form was substantial (over 30 pages), and Kerr’s options now are either to find employment or go through an appeals process to attempt to get his benefits reinstated.

http://nickyclark.blogspot.co.uk/2012/05/shame-of-blame-game.html

Waiting on John Kerr Details

I admit that I’ve known about John Kerr and his story story since last Friday and held off on blogging about it. I’ve wanted to see what the Department of Works and Pensions would do.  I’ve seen the Ontario Disability Support Program send letters saying that income supports have been cut off because the recipient hasn’t provided requested information, and that they can appeal the decision; often a phone call to the intake worker assuring them that the requested information is indeed on its way is enough to get the suspension reversed before the next cheque is issued (depending on the date and the information required). But according to Nicky Clark, this error is going to take weeks to rectify, potentially leaving John Kerr and his caregivers in a very bad financial situation.

Who’s to Blame for What’s Happened to John Kerr?

I’ve seen arguments that the people who filled out the form for John Kerr need to lie in the bed that they’ve made regarding his benefits cut. After all, the government can’t be held responsible if someone makes a mistake and creates a situation like this, whether they intended to or not, they argue.

My technical writing training tells me otherwise. If these forms are so unclear that someone could make a mistake so crucial that it costs them their benefits, then they’re not well-designed enough. The design flaw could be a number of things (or many of them):

  • It’s not clear on the form what the response process needs to be. Where does the form need to go? By what date? Addressed to whom?
  • It’s not clear how to respond to respond to the questions.  On scale questions, which end of the scale is most severe, and which is least severe?  What if two answers apply to a given question? Can you attach paper if you need more than the allotted space to comment?
  • The questions themselves are unclear.  What if you have a learning disorder and you’re unsure to whom you should go for help? What about people with low literacy levels?
  • It’s unclear how crucial accuracy is. Clearly it was for this particular form.

Obviously a form can’t be developed that meets absolutely everyone’s needs, but there *is* a process by which technical writers try to make documents as accessible to as many people as possible. Government forms aren’t particularly user-friendly (as I’m sure all of you know), which is why I used to spend a lot of time with people I supported and their families assisting them to fill out forms – precisely so this sort of thing didn’t happen. Not that I’m perfect and don’t make mistakes, but I’ve filled out a lot of the forms now and find them a lot less terrifying than people I worked with and their families did.

No One Should Live in Fear of Losing Benefits Over One Mistake On a Form

Or two…or three. This story and its suggestion that you have to be a robot who doesn’t make mistakes instead of a human being who may be dealing with multiple challenges as you fill out a large government form suggests to me that this is just another way that Britain is experimenting with thinning the ranks of people on benefits. It’s underhanded and insidious, as many people (like John Kerr) do need substantial assistance filling out the forms, and are powerless as to whether it’s submitted with mistakes or not.

And it’s just plain not right.

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Teachers Abusing Students With Disabilities

It seems like more and more stories about teachers abusing students with disabilities are popping up in the news these days. There’s the story of the Cherry Hill, New Jersey father who discovered that his son, a 10-year-old with autism, was being verbally abused by hiteaching abusing students with disabilitiess teacher, and the more recent story about the 14-year-old with brain damage in who was wheeled into a box in his wheelchair and sometimes shut in it to deal with his outbursts. My question, on reading these stories has been: How many untold stories of teachers abusing students with disabilities exist for each one that gets reported?

Teachers Abusing Students with Disabilities: How Big Is the Problem?

The small amount of research into teachers abusing students in general suggests that the (reported) incidence is quite low.  However, students with disabilities are easy targets in educational systems where teachers are overworked and expectations are very high:

  • Students with disabilities who have been mainstreamed into regular classes are often fighting for increasingly fewer Educational Assistant supports
  • As class sizes grow, teachers have to manage learning needs on a wider and wider spectrum within one classroom with less individual support for students.
  •  In Ontario at least, while all teachers are required to take *some* special education courses are part of their training, they’re not required to specialize or stay current in it unless they plan to work in Special Education. The lack of training may mean that teachers don’t know how to deal with a student’s frustrating behaviours and may end up doing something inappropriate out of ignorance, especially if resources like IEPs and behaviour/safety plans aren’t easily accessible at all times.
And, of course, the characteristics of some disabilities make students who have them very vulnerable:
  • A non-verbal student with few ways of communicating is much less likely to report abuse.
  • Some students with disabilities may not understand that they’re being abused, and so may not report it.
  • Power differentials may make students with disabilities afraid to report a teacher abusing them.

I’m in no way suggesting that all teachers abuse students with disabilities. However, it seems telling that once parents started to wire their children with disabilities and send them to school, as the Cherry Hill father did, all sort of report of teachers abusing students with disabilities verbally began to come in. http://www.chron.com/living/article/Parents-wire-kids-to-prove-teachers-verbal-abuse-3509966.php Not that wiring your children is necessarily a good idea, because of potential legal ramifications. But I can see why a parent of a child who doesn’t communicate verbally might take that step. No matter how frustrating a teacher’s job circumstances might be, teachers abusing students with with disabilities (or any student, for that matter) is wrong.

Teachers Abusing Students with Disabilities: I Don’t Know Why This Is So Complicated

Teachers and Principals:

  • Refer to behaviour/safety plans and strategies, and follow them. If something strikes you as “Wow, I wouldn’t want that being done to my kid”, request that the plan be reviewed with your Board’s behaviour specialist or a behaviour specialist from an agency.
  • Keep families in the loop. Review behaviour plans/strategies each year at the IPRC.  Keep a communication book going between the school and home.
  • Keep each other accountable as staff for what sorts of behaviour interventions you use, when, and why.
  • Remember that when students with disabilities do report, they may not be able to do so as eloquently as students without disabilities. Sorting out the details may take more work and may have to involve paraprofessionals. The complaint is still valid, needs to be investigated, and the needed resources should be brought in without hesitation.

If you wouldn’t do it to a student who doesn’t have a disability, don’t do it to a student who has a disability. If you wouldn’t use a method of discipline with the parent in the room, there’s something wrong, and you need to reconsider what you’re doing.

Most special education teachers are in that field because they love it and they want to be there. But the ones that would put a student in a box or call students names don’t belong in the classroom. Let’s stop teachers abusing students with disabilities and keep schools safe for all students.

More on teachers abusing students with disabilities: https://tspace.library.utoronto.ca/bitstream/1807/27602/3/Sharpe_Glynn_W_201103_EDD_thesis.pdf

Story on the “box punishment”: http://www.dailymail.co.uk/news/article-2145965/Mother-distraught-school-puts-wheelchair-bound-son-box-time-out.html#comments

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Disability Living Allowance Cuts in Britain

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 aboutdisability living allowance 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 Cameron’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 Duncan Cameron’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 and all the people using so many of their spoons to work so hard against what’s happening in Britain. You all inspire me. :)

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Spoon Theory and People With Disabilities

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 Spoon Theorygiven 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 it 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

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Musings About “Inspiration Porn”…

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:

inspiration porn

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 (and Oscar Pistorius, the athlete in the picture) 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

 

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