Happy Canada Day!

canada dayThis is my third Canada Day post.

Along the themes of my other Canada Day posts, I’d like to reiterate how lucky I am, as someone who’s needed a lot of medical treatment, to live in Canada. Cost wasn’t a factor in my decision (and ultimately, as I had next to no money when I discovered that I’d need brain surgery, my family’s decision) to have my AVM treated.

Heck, I could barely have afforded the first ambulance ride to the first ER visit, let alone the ER visit itself, if I’d lived in a country without universal health care. Even with my family helping as much as they could, how could we have afforded the 14-hour brain surgery with one of the best AVM surgeons in North America, let alone the rehabilitation that came afterward?

My new friend Cheryl Green wrote a great essay about brain injury for the “Criptique” anthology (which I highly recommend, by the way) in which she talks about many things that I could ramble about for hours…but today, as a Canadian, I’m struck by her observation that significant recovery after a brain injury (I use “recovery” even though I’m trying to avoid it…it’s not sitting well with me today) is often due to being in a privileged position. Well, if my story is any indication, that’s certainly true.

My Canada, My Privileged Recovery

Stories vary from region to region, as some provinces as definitely wealthier than others right now. The late Elizabeth McClung had a terrible time getting health services when she was really struggling, that would have been easier for her to get if she’d lived in my province, as British Columbia was struggling to pull itself out of debt after the Olympics after at the time. She experienced a much different health care system than I did. That wasn’t right. It was heart-breaking and infuriating to read her writings about what she was going through.

I didn’t live her experience:

I didn’t have to fight with insurance to stay in rehabilitation (in-patient or out-patient). In fact, staff fought for more inpatient rehabilitation for me once my allotted stay at the first hospital ended.

Nursing support was available for when I wanted to come home on weekends from the first rehabilitation hospital.

I didn’t have trouble getting onto the Ontario Disability Support Program. If I hadn’t, my family would have supported me, but the huge financial burden of paying for my medications was lifted because access to a drug plan came with ODSP.

When I was concerned that I’d had another small stroke, after being discharged from the AVM clinic, a phone call was all it took to get me back in for some diagnostic tests. A person I know who lives in the US never got diagnostic tests done after his stroke. He couldn’t afford insurance at the time.

Canadians DO pay for Health Care

As I’ve explained to the intellectually disabled people that I’ve worked with around tax time each year, Canadians do pay for health care with their taxes. That many people do not have the positive experience with the health care system that I have makes me sad – not just because it proves that there are parts of it that are most definitely not working well, but because it gives ammunition to those that would say that because some people have had a bad experience, the whole thing should be scrapped, especially to friends Stateside that seem to think that Canada’s system looks like what Obamacare presently looks like.

Just some notes on Obamacare:

Yes, the roll-out was problematic, and there were some responses by the Democrats (including Obama himself) that made me want to :headdesk:.

I still think it’s a step in the right direction.

For anyone not clear on my position on this: Canada’s system is not perfect. But the fact that money (or lack of it) doesn’t have to be a consideration when Canadians are evaluating healthcare options *is* one of the things that makes me proud to be Canadian.

It does make us privileged, but that’s not something about which we should feel badly. It’s just something to keep in mind.

May I always be mindful. Elizabeth helped to teach me that. I miss her.

Happy Canada Day!

“Criptiques” is available here, and is a must-read.

Comments { 0 }

When “Disabled” is a Dirty Word…Thoughts on Terminology

disabledI’ve been part of a discussion in an online group of disability advocates, most of them disabled themselves, about disability terminology. The specific question posed was: Are we disabled or impaired?

I don’t know any of these people very well. They all seem very nice and very committed to what they do, and I enjoy hearing their perspectives. But the discussion has left me confused. My takeaway from it was that the people in the group did *not* like the word “disabled” and were disturbed by my comment that a growing number of people in the disability advocacy/activism sphere don’t like person-first language. And I’m not sure how well my comment went over that I was puzzled that, for a group of disability advocates, there seemed to be an attitude in the group of “I am *not* disabled! I am *not* one ONE OF THEM!” To my mind, everyone seemed to be twisting themselves into pretzels to find a self-definition that didn’t include “disabled” or “disability”.

They’re all entitled to their preferences in this area, of course, and I stressed several times that when I’m doing advocacy work, I ask the person their preference for disability terminology and respect it. Just because I prefer “disabled” to “person with a disability” doesn’t mean that everyone has to go with it!

Apart from the philosophical reasons that I like “disabled”, I feel it’s an accurate word. I’m a disabled person, and my disability prevents me from doing everything that I was able to do when I was non-disabled, sometimes in very significant ways. I think it’s important to acknowledge that.

I’m Disabled and I’m Okay With It

Some people might be surprised to hear me say that. I know that in some jobs, people felt like I was setting people I supported up for disappointment by suggesting that they could do things that they had no hope of being able to do.

I don’t agree, but I do acknowledge that it’s complicated. I really don’t believe that I have the right, ever, to say to anybody, “No, you can’t do that, no matter how unlikely it seems to me at the time that they’ve set a goal that they’ll actually reach someday (due to whatever reason). People have the right to have dreams. I worked with people to come up with a plan for putting in place what they wanted to happen in their life. If someone wanted to become a Broadway dancer then damn it, we’d look into what someone had to do to become a Broadway dancer.

Sometimes I’d be able to put get people started on making dreams a reality. One young man wanted to enroll himself in a particular community college course, but needed a reading comprehension course that, because of his special education program, he’d never taken in high school. I got him signed up in an academic upgrading program to get the course. But we talked very frankly before did it. We talked about how there wouldn’t be the Educational Assistant support that he’d had in high school and that, while he could certainly ask the teacher and his parents for help, he’d be working very hard and could possibly find the course difficult to manage. We talked about strategies to help. We talked about staying in touch every week so that we could monitor how this was going and see how we could meet any challenges that might arise.

I believe in dreams, but I’m also a planner. I’m very practical.

I couldn’t always make peoples’ dreams come true. But everyone has to learn to deal with the reality that they’re going to have dreams that aren’t going to come true. I wanted to be a ballerina once upon a time, but learned quite early in life that it wasn’t likely to happen. I’m just not physically built for that kid of career. I learned the hard way that I’m not going to be, no matter how low my weight is.

It was hard to hear when I was ten years old that I wasn’t going to get into the National Ballet School because I was too chubby, but they did not say, “Stop dancing.” People that I supported learned, once we looked into what it would realistically take to make some of their dreams come true, that these things weren’t likely to happen for them, either. But I tried to find ways for them to keep that dream alive in their lives in other ways – so that they never heard “Stop dancing” either. I’d never suggest to someone that they abandon a dream…I might suggest that they go at it another way, though. Again, sometimes I think presenting that as an option is the responsible thing to do, as a support person for disabled people

So yes, I believe in encouraging people to dream big. But I also believe that “The Only Disability is a Bad Attitude” nonsense that implies that a disabled person can accomplish  anything if they try hard enough is unfair. As support people, we need to nurture disabled peoples’ strengths and talents and support them as much as possible to accomplish what they want to in life. However, we also need to be realistic that disability (at least at this point in its history as a social creation) presents limitations that sometimes, as unfair as it is, people can’t get around. We do disabled people a disservice to suggest otherwise.

Story Time

Once I was well enough after my stroke, I went to community college get my Developmental Services Worker diploma. The DSW diploma is specific training for those that want to work in support positions with intellectually disabled people. I’d planned to start the two-year program before my surgery, but had to defer a year after my stroke.

I asked the program heads when I started, “Given my disabilities and the physical nature of a lot of support work, is this program still appropriate for me?” I was told that they were committed to student success, and that I’d have all the accommodations that I needed to complete the program.

Which they did provide, in spades. In fact, I told Student Services a couple of times to back off and stop trying to push things on me that I’d clearly said I’d didn’t need. But I’d asked them the wrong question, and in retrospect I’m annoyed that they couldn’t see it. Because while it was awesome that they made it possible for even me to complete my community placements easily  (and some of those did require physical work that would be difficult even with my level of functioning now), I saw quickly once I started job-hunting that those sorts of intense accommodations weren’t available in the entry-level support positions primarily available to people who had just graduated from the program. The community college told me they’d get me through the program. They didn’t tell me that it was going to be very, very difficult for me to get a job.

I couldn’t do lifts or transfers.

I couldn’t get certified in the NVCI holds. Even getting the required First Aid certification that let me participate in my school program had been dicey.

I was useless for group home work. For logistical reasons alone, let alone safety ones and ones related to preserving dignity, supporting someone with just about any activity of daily living really required two functioning hands. Not to mention that I couldn’t cook and that folding laundry took me forever.

I couldn’t drive a car.

I did get a job after a year with a School Board as supply Educational Assistant, which shocked the hell out of me. They didn’t realize just how disabled I was until they’d actually hired me, and advised me that I wouldn’t likely get called often. When they did call, I worked my ass off at the stuff I could do and constantly challenged myself, asking for accommodation for only the tasks that had the potential to put students at risk. By my third year, some Educational Assistants were asking for me when they had to take time off.

By that time I’d also gotten a job with an agency with whom I’d volunteered. It was a case coordination and planning job, so direct physical support wasn’t required. When I needed transportation to complete tasks, the agency found ways to facilitate it. It was a great job, and I was sad when, as often happens with these government-funded jobs, it suddenly ended.

So yes, there were jobs, but I wouldn’t get either if I applied for them now. Funding has changed service provision in both the education and social services sector since I had those jobs, and I’m even less cost-effective now than I was then (even if I was good at what I did).

I don’t regret for a moment going to school to get my DSW certification. It was a good decision at the time, for a number of reasons. But I wish that I’d been told, “We’ll get you through the program. But your odds of getting a job aren’t good, because your disabilities don’t make you a good fit for most of the most of the jobs that people start out in this sector.” I feel like the administration was so focused on making sure that any disabled person could complete the program that they lost sight of the fact that the program’s ultimate goal was to prepare us for *employment*. I feel like they did me a disservice by not acknowledging my disabilities and the limitations that they create for me, as a person living in a society largely designed for non-disabled people. Society is simply not far enough along in its progression toward a true culture of inclusion that I can work in the environments in which my DSW diploma primarily trained me to work – ones that require employees to provide often physically demanding direct support, with a minimum of staff present at any given time, so that it’s very difficult to accommodate my particular disabilities. Fact.

And in those sorts of environments where client safety needs to be  the number one priority, I’d rather believe I’m a liability and not be in those sorts of jobs than insist that I’m not and discover that, say, in an emergency situation, I am. If I’m one of even three staff that has to get everyone out of a group home in the middle of a night because of a fire, and there are people in the house that need assistance with lifts and transfers to get into their wheelchairs, I’m a liability.

I’m disabled, and I don’t understand why it’s a dirty word.  When I acknowledge and accept the fact, I can plan how I’m going to create the life that I want in spite of it – even if that’s not the life that I always wanted.

The good thing about not always getting what you want is that sometimes you end up getting something better. :)

Sorry this was so long…still thinking this one out, obviously. Have a great weekend.

Comments { 9 }

Happy Blogaversary to Me!

balloonsI like the end of May and beginning of June because I get to post about 2 cool things fairly close to each other – my yearly stroke update and my blogaversary post!

GirlWithTheCane (the blog) is three years old today. I started it as something to do while I was looking for a job and it’s one of the most fulfilling personal projects that I’ve ever undertaken.  Not just because it’s writing, which I love to do, and not just because it gives me the chance to write about things that are very important to me, which is awesome – but because it’s brought me in contact with so many amazing people!

This year I learned a lot about autism. I’ve been writing for Ollibean.com and reading the work of the other people that contribute there…reading the the things that they read…and the thoughts of people like Lydia Brown, Judy Endow, Henry Frost, Renee Salas, and Amy Sequenzia have educated me, touched me, deeply humbled me at times, and caused to me to examine how I look at autism and autistic people and at disability in general. It’s been a very educating year.

I’ve been disabled for fourteen years now, been in the developmental services field for over twenty years,  and sometimes I feel like I still know very little about it all.

Thank you to everyone who keeps coming back to read, and to all the people who’ve been such a support. I love that I’m not only writing about these things that are important to me but that people actually read it. :)

Cheers,

Sarah

 

 

Comments { 2 }

Ontario’s June 12th Election and “End The Wait”

end the waitOntario, the province in which I currently live, is electing a new Premier on June 12.

Even if you’re not from Ontario (or not from Canada), you can pretty much guess the major issues around which this election revolves: jobs, taxes, transit and transportation, energy, education, social services, and health care. Here’s a cheat sheet on the major issues and the major parties’ position on each, for those so inclined.

Developmental Services and “End The Wait”

One of the issues that’s getting only minimal press is the state of developmental services in the province. Community Living Ontario has been trying to bring attention to the situation during the election through its “End The Wait” campaign.

I knew when I stopped working in social services that things had been teetering on “crisis” when it came to supports for intellectually disabled in the province for probably longer than I wanted to admit, and that it seemed like it was getting worse instead of better. I knew that say, if an individual was living at home with family and things to got a crisis point where the person couldn’t stay, finding an emergency placement was next to impossible. I knew that young people with high support needs were finding themselves in nursing homes, which aren’t even overseen by the same Ministry that looks after social services, because there were no spots in group homes. I’d spent the last year filling out applications with individuals and families for funding like Special Services at Home and Passports, saying even we filled out the forms, “You should know that you shouldn’t get your hopes up for this, at least not right now. The funding is frozen, and there’s a wait list. But you never know when they’ll unfreeze it, and it’s good for families to apply because it shows that there’s a need in the sector.”

Sometimes I felt like I could hear their hearts breaking.

Why “End The Wait”?

That was nearly 3 years ago.  According to “End The Wait”, this is the current breakdown on where supports for intellectually disabled people stand in Ontario:

  • 25 000 intellectually disabled children and adults are on wait lists for supports
  • 7000 intellectually disabled people are on wait lists for supports that would allow them to live in a home of their own.
  • Support agencies haven’t had their budgets raised in four years.

The 2014 budget promised $810 million to the developmental services sector over the next 3 years to deal with the wait lists and provide needed infrastructure for expanded services and innovative service provision, with funding made available over the next 12 months for individuals in crisis situations. The incoming government needs to commit that they’ll follow through on that promise, though. “End the Wait” asked the candidates for the Liberal, Progressive Conservative, and New Democratic Parties if they planned to follow through on this commitment.

The responses from the candidates to queries from “End the Wait” are posted on Community Living Ontario’s website. Obviously the Liberals have given this the most thought (or at least done the most work to make themselves sound educated about the issues.) The NDP committed to the funding, and typed a few words that said very little about their “plan” for developmental services. The Green Party kept it very short and sweet, but also committed to providing the funding as promised. The Progressive Conservatives didn’t bother to answer the query from “End the Wait”. Take from that what you will.

Where Does That Put The Voters?

In an election that, for me, is very much about trying to determine who is least among several evils, you’d think that the Liberal party’s knowledge of the issues and their attempt to talk a bit in their letter to Community Living about how they’d make use of the $810 million would move them up a step for me. The Liberals promised a significant amount of money before, dispersed over 4 years, but a requirement for agencies to provide more supports with the same amount of money in 2009 coupled with an outright pulling of the 2010 funding means that agencies really got half of what they should have (Read more here. The report is interesting, even if I don’t agree with their assessment of direct funding and its implications). I’m just suspicious of the Liberals in Ontario in general right now. And I’m a member of the Liberal Party of Canada!

So, if you’re in Ontario and you started reading this hoping that I’d have some words of wisdom about which party is best going to best represent the issues for disabled people in Ontario, and intellectually disabled people in particular, I’m afraid that I couldn’t tell you. I can tell you who won’t do it, though (my opinion only…”End the Wait” and Community Living Ontario haven’t endorsed anyone): The Progressive Conservatives. Not just because of Tim Hudak’s failure to respond to “End The Wait” and its concern, but because of hid commitment to merge ODSP and Ontario Works (programs with two very different mandates), and the similarities in his platform to that of Mike Harris in the 1990s. I may have only been a teenager, but I lived with a teacher. I remember. The “Common Sense Revolution” wasn’t kind to vulnerable people or the people that worked hard to support them, and the developmental services sector won’t see a penny of that $820 million if he gets in.

Give this one some thought, Ontario, and be sure that you vote on June 12th. And sign a petition to go the politicians. End The Wait.

Comments { 0 }

Fourteen Years Post-Stroke, It’s all Good

stroke2I was actually planning to write this post, my annual “anniversary of my brain surgery” post, right when I was supposed to this year – May 29. But then Joe Scarborough pissed me off and I got distracted. So my post about how it feels to be heading  into my 15th year as a stroke survivor is a little late.

I know that there are people who started reading this blog and following me on Twitter because I said originally that it was going to be a blog about my stroke experience. I wonder sometimes if they think, “But she never talks about her stroke…?” Truthfully, I don’t really think about it all that much anymore. It flashes through my head when I’m trying to do something like open a jar, or move something with one arm/hand that requires two for good reason (I recently killed a printer this way, discovering the hard way that printers don’t like being dropped from even very small heights.)

But I don’t even really think of myself as a stroke survivor anymore. I’m just me. I had a stroke. I live with the way that it changed me, and life goes on. The experience put me further along a path on which I was already, because I’d already been volunteering in the disability sector when I had the stroke. But I don’t want what I’ve survived to be what I focus on for the rest of my life. Maybe that’s why, for the last couple of years, the anniversary of my stroke (or my rebirthday, as one of the online support communities to which I belong calls it, but I’m not really crazy about that terminology…nothing about me died about that day except for some neural pathways) has blown right by me.

But here’s the “State of the Union” at we head into my 15th year as a stroke survivor:

  • I still have very little use of my left hand, but really just because my thumb doesn’t move. Other than that, my hand has low tone, is generally quite relaxed (lies relatively flat, doesn’t sit curled up into a fist), but still has very basic range of motion. I can’t flex my wrist. If I use my other hand to wrap weak hand around a car door handle, I can open it, but eventually my thumb will move away from a grasp position to lie flush against my palm, and grasping will become very difficult. Getting my hand to do much of anything for very long is like trying to coax  my tw0-year-old niece into doing something she doesn’t want to – I may have some success initially, but sheer will just isn’t enough. It means that I do very unglamourous-looking things like open chip bags with my teeth, and when I’m out eating with people for the first time I give my standard warning that while I try to make it as presentable as possible, sometimes it’s just – not. But, on the other hand (ha! I made a pun!), I make one-handed living look quite natural, to the point where an acquaintance didn’t realize that I couldn’t use my left hand until I recently pointed it out to him.
  • My left  arm is still weak, but has good range of motion. I can use it to anchor things when I’m trying to perform tasks, and it’s strong enough that, if necessary, I can carry something in the crook of my elbow if I bring my arm tight against my body.
  • I can perform most of the tasks that I need to do on a daily (and sometimes not-so-daily) basis with one hand. This has included (because necessity is the mother of invention and I’m quite stubborn), getting a cat into a cat carrier. I am still learning to cook, with the help of a very kind and patient friend – this is coming along slowly.
  • I can walk up to 2 kilometres without a break. Walking that distance takes forty-five minutes to an hour. I could probably go further. I can support my full weight on my weak leg for very short periods and I can do very, very small hops, supported, on it. I’m starting to practice going down the stairs leg-by-leg instead of bringing one leg down a step and then bringing the other to meet it.
  • They’ve finally found a drug cocktail that will completely control my seizures, and I’m over two years totally seizure free. I even have my learner’s permit. I’m not driving, though. I need an adapted wheel, and for that I need a car on which to put the adapted wheel…and right now that’s just not in the cards.
  • I still have no sensation in the top of my head around the brain surgery scar, but that’s to be expected, I think. I think that the sensation on my left side is pretty good, but I thought it was pretty good when I broke my left little finger a couple of years ago and didn’t realize it, so I hesitate to speak authoritatively on that.
  • I still lose my words or mix them up especially if I’m tired or if I’m trying to get a lot of thoughts out quickly.
  • I may have mild narcolepsy. This, as far as I can tell, has nothing to do with the stroke. I’ve always had sleep issues, and had some investigation into them even before my stroke. I decided that it was time to do so again when I started falling asleep at my desk chair a few months ago and not realizing it until I’d woken up. I fell out of my chair one of those times. I’ve got enough scrambled in my head that I don’t need to risk whacking it off the floor and knocking anything else loose, so this sleep investigation appears to be the next medical chapter.
  • With the hired nerd job and my freelancing work, I’m back to working full-time – more, most weeks. It’s tiring, and I often crash for a day on the weekends.

It’s not perfect. Some days it’s very frustrating – not because I can’t get done what I need to get done (because I really can, for the most part…and I have a bunch of people who are more than willing to help with the things with which I do need help, when that’s necessary), but because of the (mainly attitudinal) barriers that make life challenging for most people with disabilities. I’m very mobile, but physical barriers (particularly poor snow ice and removal on sidewalks, stairs and ramps) is still a danger for me.  I’m still not always the greatest at asking for help, or accepting it when it’s offered…but I work on it.

I work on it. Isn’t that all any of us can do?

Considering that the doctors in the first rehabilitation hospital in which I spent time didn’t think that I’d get enough arm function back to really do much with my life again, things are going okay. As I’ve told people many times, lots of people have come out of the same surgery that I had with far more health issues than I did – and I had the benefit of great physiotherapy, and lots of it.

I also had (still have) wonderfully supportive family and friends, some of whom I met through writing this blog.

So there are many more positives than negatives, overall. And I look forward to telling you all about them again on May 29th next year. :)

Comments { 6 }

Joe Scarborough Continues to Misinform the Public about Autism

Joe ScarboroughSo Joe Scarborough is at it again.

This marks his second appearance in the blog for passing off his opinions about autism as fact on MSNBC (and, researching this story today, I found out that he’s done it a third time that I missed), and I’m writing about it to add my voice to those that are asking that he please not do it again.

We’ve already got PETA warning people this week about a totally unsubstantiated claim that there’s a link between autism and consumption of dairy products. We don’t need Joe Scarborough expounding on what appears to be a favourite talking point about a supposed link between autism and violent behaviour.

Quite enough of that has been going on since last Friday.

Mass Killings and the Media’s Love Affair with the Autism-Violence “Link”

It’s been just over a week since Elliot Rodger opened fire in Isla Vista, killing 7 people and wounding 13 others. And, of course, the media has been making much of the fact that he was autistic, although some sources are now disputing that he was actually diagnosed; see here and here.

Here are 4 articles from major news sources I found just by doing a quick search, that commented on the fact that Rodger was autistic, implying a link (more strongly in some cases than others) to his violent behaviour:

California killer’s father struggled with money, court documents show

Mental illness in spotlight after UC Santa Barbara rampage

Virgin killer’s parents read his hate-filled manifesto then called police then rushed to stop him when they heard of murder spree on their car radio

Elliot Rodger is Isla Vista drive-by killer

And, of course, Joe Scarborough felt compelled to comment, as he did regarding the gunmen in the Aurora, Colorado movie theatre shooting in 2012 (he stayed blessedly quiet after the Newtown shootings), that Rodger had Asperger’s Syndrome (which now falls under the umbrella of Autism Spectrum Disorders). It makes perfect sense to him to talk about this, as he knows there’s clearly a link between an autism diagnosis and the tendency to commit this sort of violence. He’s done this twice about Elliot Rodger.

Except that the consensus is now that there’s not a link. I’d expect Joe Scarborough to know this, as a media person.

I’d expect that Joe Scarborough would have done his research on this, and that he’d know that scientists no longer put much stock on the studies that originally suggested those findings (see this article for a brief summary of the research). Perhaps he thought that there’s a bandwagon on which to jump at the moment, given that the Washington Post wrote an article recently about a new study suggesting a link, but it’s looking like even that study was flawed.

The research just doesn’t support the idea. But Joe Scarborough wants to keep talking like it does. And it’s important that he stop.

Why is it Important, Joe Scarborough?

I’m not writing about this because I had particularly strong feelings either way about Joe Scarborough or MSNBC before this latest “commentary”. Granted, I wasn’t a huge fan of either. But my cable package doesn’t let me get MSNBC so it’s kind of a moot point. I rarely watch 24-hours news channels these days anyway.

I have strong feelings now. I definitely wouldn’t watch MSNBC, even given the opportunity, as long as they think it’s okay to let this sort of ablism continue to happen on the network.

This is important, Joe Scarborough, because after a highly emotionally charged event like the UCSB shootings, people are upset and hearing selectively. From what I saw and read, the media was a bit better than after Newtown especially about explicitly stating that even though the shooter was autistic, experts didn’t believe that it was a factor in his behaviour, instead of just jumping on the “autism = violence” bandwagon with no qualifying statements. I will give them that. However, people were (are) understandably in shock, and sad…angry, scared, and looking for the “why” behind the event, and in that state, hearing “Elliot Rodger had high-functioning autism” (yes, I’ve seen it put that way, even though using the functioning level label is quickly falling from favour within the disability community…there are sensitivity issues in the coverage for which the media does not get a free pass) is going to stick with them.

Especially when a media figure like Joe Scarborough goes beyond speculation and starts deliberately giving out information based on pseudo-science and/or outdated research. It’s bad enough that 24-hour news networks speculate about the details of a story because they don’t know enough facts yet and they still need to fill time (and regular CNN viewers know that it’s come back to bite that channel in the ass before). It’s quite another to start giving out the wrong information about a group that’s already fighting misinformation campaigns and discrimination when the right information is easily accessible.

It’s unethical and irresponsible on Joe Scarborough’s part, and it’s just another sign of how devalued autistic people truly are in society that MSNBC hasn’t reprimanded him for it, or reprimanded him more publicly, if they did. He did release an “apology” in an off-air statement after pushback after his remarks after the Colorado shootings, but there was nothing on-air.  If he’d started going on, on-air, about an unsubstantiated claim that belonging to a certain race made someone more likely to commit mass violence, I would think (hope) that the network would shut it down promptly and emphatically and require, at the very least, an on-air apology. Certainly two repeat offenses would likely result in the person being fired.

Why is this different? Why has Joe Scarborough gotten away with doing this three times?

Imagine How It Must Feel, Joe Scarborough

I know that the autism witch hunt after these events has gotten to the point where one of the first things I ask myself after hearing about a mass shooting like the one at UCSB is, “I wonder how long it will be before someone asks whether the shooter is/was autistic.”

I’m not autistic, so I can’t understand what it must feel like to know, for autistic people,  that it’s never very long.

I try to think how I’d feel if the question was about an unsubstantiated link between stroke and violent behaviour that the media kept insisting on bringing up, and as someone who would be then be affected by the question, these feelings come to mind:

Dread.

Fear.

Anger.

Helplessness.

Sadness.

It’s a heck of a lot to shoulder. It’d be quite a thing to explain to an autistic child (to any child): “You’re okay…they’re only saying that because they thought at one point that autistic people were more violent than other people. They were wrong about it, but they…can’t let it go.”

Let it Go, Joe Scarborough

Joe Scarborough, no one likes being lied about, especially when those lies are damaging.  If you feel the need to speak about autism in connection to mass shootings, speak about it accurately.

For the sake of your autistic son, if no one else.

With all due respect, I don’t want to have to write about you (at least not in this context) again.

For those interested…

Joe Scarborough’s commentary after the 2012 movie theatre shootings in Aurora, Colorado

Commentary on the “non-apology” and a great interview on the autism-violence “link” with Autism Self-Advocacy Network President Ari Ne’eman and journalist Mike Elk (also after the Aurora shootings)

Joe Scarborough’s first comments after the UCSB shootings – “…he was on the Asperger’s scale – big surprise.”

Joe Scarborough’s most recent comments. The general comments about talking about mental health are spot on – but he brings it back to Asperger’s Syndrome, which he doesn’t feel he can name on the air because of criticism that he’s (rightfully) received in the past after doing so.

Comments { 0 }

The TALK-SC: Sex Education for People with Intellectual Disabilities

talk-scIn a discussion with friends that came up after I published the posts about Judge Christopher McFadden and his ruling on a case involving the rape of a young woman with Down Syndrome, questions came up about whether she could really consent to sex in the first place.

“Depends on the person,” I said. “It gets complicated.”

I didn’t go into it any further because it *is* complicated, and having to talk about the issues involved with sex and sexual consent in adults with intellectual disabilities is something that’s still relatively new for the field. Society tends to treat adults with intellectual disabilities like they’re children, forgetting that they’re sexual beings with adult sex drives and the same desires as most people to be in romantic relationships. Changes in how we view the rights and responsibilities of adults with intellectual disabilities, and increased opportunities for community involvement and interaction with others, have given them opportunities to explore the world of romantic and sexual relationships that previously weren’t available to them…but have created a need that historically hasn’t been there for education and safety training.

With so many differing attitude in society regarding sexuality, confusion about it among people not facing the challenges associated with an intellectual disability, and discomfort about talking about it general, it’s no wonder that people with intellectual disabilities don’t get information about relationships and safe sexuality that they need and are entitled to.

Which is why I was so excited to hear that disability advocate Dave Hingsburger and a team of of professionals who have worked closely with people with intellectual disabilities in the area of sexuality had developed an assessment that could either be used to determine in what areas an individual needs education about sexuality (and to assess how effective that education was), or to determine (with an appropriate professional’s assistance) whether a person can legally consent to a sexual relationship. It’s called the TALK-SC.

I was very excited to see the TALK-SC. I’ve talked before about how I’ve had to work with individuals to assess their level of knowledge around sex and sexual safety. Getting the required information without prompting or putting words in someone’s mouth is tricky.

I asked Dave if I could blog about the TALK-SC. I really like it, for several reasons:

1. The Person Being Assessed Has to Consent to Having the TALK-SC Done, and Can Revoke the Consent at Any Time

The assessment instructions make it clear that the person is at the centre of this. They are to be informed about what the assessment will be used for, the benefits and risks of taking it (especially in the Consent context, which could result in them not being able to have sex until getting education in some areas of need identified by the TALK-SC; I don’t know enough about this area of support to know how this would be enforced), what they’ll be talking about, who else the assessor will be talking to, and that they can revoke consent at any time. The materials explaining the TALK-SC to the person being assessed, and the consent forms, are wonderfully plain-language. The consent forms in particular are among the best that I’ve seen.

2. The Must-Pass Questions Get to the Core of the Issues

In order to pass for Consent purposes, 6 questions have to be answered correctly, and they nicely get to the heart of the issues around public and private behaviour, consent and safety:

1. a) If someone asks you to take your clothes off do you have to?  b) Why would a doctor ask you to take off your clothes?

2. Two people are having sex. What are their bodies doing?

3. A person wants to have sex with their partner and the partner does not want to.  What are their choices?

4. You are making out (kissing and touching) with your partner, they ask you if they can touch your penis/vulva (“vagina” can be substituted) and you say yes. When they start, you get uncomfortable, can you still say no?

5. You are on the bus and your crotch is itchy, is it okay to pull your pants down to scratch it?  Why or why not?

6. You see someone really sexy in the park and you decide to go to the bushes and start to masturbate. Is this okay? What can happen to you?

These questions are part of the 5 scored modules in the TALK-C. The person must get a 70% score in each TALK-SC module to be deemed to have enough of an understanding of the issues surrounding sexuality to be able to consent to sex.

3. Professionals Are Involved

While a support person (preferably with another support person present) can administer the pre-test portion of the TALK-SC that’s designed to assess a person’s level of knowledge, the post-test (whether it’s being given as part of the process to assess ability to give informed consent, or to re-test knowledge after training) is given by a clinician or someone with experience with sexuality in people with intellectual disabilities.

Thank goodness…especially regarding the consent issue.

I probably could handle giving the TALK-SC, but making the actual ruling on consent isn’t something that someone without considerable knowledge and experience should be doing (my opinion). And it’s much more influence that I personally care to have over anyone’s life, quite frankly. I’m all for keeping people safe, but I have a healthy sense of when something’s outside my knowledge level and skill set, and I don’t like to stretch very far when other people are involved.

Which is why I overcame my initial resistance to the idea that, when conducted to investigate ability to consent, a information-gathering interview is also done with someone close to the person being assessed. I generally don’t like the use of interviews about a person where they are not present as a means of gathering information, although I do recognize that sometimes there is no other alternative. The TALK-SC instructs that the person is to be made aware that this is going to happen, they’re told about the questions that the person will be asked, and can stop the assessment if they’re uncomfortable with an interview being done with others at which they’re not present, so this is really done as ethically as it can be (again, my opinion). And for a decision with potentially far-reaching implications for a person’s life, it makes sense to get as much information about a person’s level of insight about sexuality as possible. Ultimately the ruling around consent is about keeping people safe.

4. Even a Finding That a Person Can’t Consent is Treated as Temporary

The TALK-SC definitely allows for the possibility that people may be found to be in a position where they have to be told that they can’t have sex. However, the TALK-SC is also very firm that this circumstance is to be treated as temporary, pending appropriate education, and that a prohibition on having sex does not mean that a person cannot be in a relationship and hold hands, kiss, etc. It assumes the best in people, and assumes that people can learn and grow. Any sort of support for people with intellectual disabilities should be making these assumptions.

The Importance of Tools Like the TALK-SC

As I said at the beginning of this entry (and as I’ve said several times already in this blog), people with intellectual disabilities have the right to be in romantic relationships and the right to high-quality education about all aspects of being in a romantic relationship, including sexuality and sexual safety. This is a great step forward in that area.

I would assume that any sort of assessment that comes from a team involving Dave Hingsburger would have these assumptions at the centre of it, and be firmly rooted in compassion and deep respect for the people for whom it was developed. The TALK-SC exceeded my expectations. When I first heard about it, I thought, “It’s Dave, so I’m sure it’s going to be great, but I have no idea how he’s going to pull it off,” and I really am impressed by what he and the team have come up with. It is being offered to agencies and advocates free of charge. If you’d like to receive a copy, email Dave Hingsburger at dhingsburger@vitacls.org.

The TALK-SC was developed by Dave Hingsburger, K. Beattie, T. Charbonneau, J. Hoath, S. Ioannou, S. King, S. Loftman, L. Lynn, K. Miller, M. Mudunuru, C. Outhwaite-Salmon, and S. Woodhead, with support from MacKenzie Health, Vita Community Living Services, Angie Nethercott, Patty Barnes and and Joe Jobes.

Comments { 0 }

Michael Mullins Sings National Anthem at Fenway Park – Tough Questions

michael mullinsAll right, people, prepare yourselves. I’m feeling cranky, and I may sound a little cold-hearted in this post. I don’t mean to come across that way, and I do apologize if that’s the case…but, frankly, I’m okay with it. It’s just my viewpoint, and (as always), you’re welcome to take it for what it’s worth. But I read a news story the other day about Michael Mullins, a man with Down’s Syndrome who recently sang the American national anthem at a baseball game at Boston’s Fenway Park, and it rubbed me in all the wrong ways.

Not because I think it’s wrong that someone with Down Syndrome sang the national anthem at a professional baseball game. Why would it be? Particularly since Michael Mullins does have  a very nice voice. It’s been his dream for almost a decade, apparently, to sing the national anthem before a Red Sox Game at Fenway. He’s been actively campaigning with Fenway staff for the last four years for the chance to do it.

Here’s my issue: Plenty of people who since very nicely would also love the chance to sing the national anthem at a Fenway game, and wouldn’t get anywhere near the top of the list of the people being considered for that privilege, even after four decades of campaigning for it. I suspect that Michael Mullins got the chance more because he’s disabled than because of the quality of his voice.

Voice quality was probably a factor. Just not likely the deciding one.

That’s problematic to me.

Did Michael Mullins Agree to “Raise Awareness”?

The video of Michael Mullins singing was uploaded with the following caption:

This video literally captures a dream coming true as Mike raises awareness for adults with disabilities while showcasing his amazing singing ability. Please share this video to raise more awareness and promote an amazing dream coming true.

I’ve got dreams, too. I’d love work with Jon Stewart as a writer for “The Daily Show”. But not because me having that job raises stroke awareness, or because there’s a perception that because I’m disabled, that makes whatever writing gifts I do have especially amazing. Or because, as a disabled person, my life must be so difficult that I’m more deserving of a chance than other folks than having that dream come true. All things considered, even my post-stroke life’s been pretty cushy. If we’re going to start out “Your dream’s coming true” cards to people on the basis of how great the challenges are that they face in life, plenty of people (disabled and non-disabled) should be in line for one ahead of me.

I’d rather get the job on my own steam, thanks.

I know nothing about Michael Mullins. I imagine that his life’s been difficult in some ways…perhaps many ways. Maybe he’s been had some of those raw deals that make me wonder how people go on – I have no idea.  And maybe he agreed that singing at Fenway would be a great chance to raise awareness about disabilities, and didn’t mind that the opportunity came along with the obligation to be an “automatic activist“.  It’s possible. The media paints a story, however, of him just being happy to sing, not one of wanting to be an ambassador for the disabled community.

The Importance of Treating Michael Mullins Like an Adult

What really made me uncomfortable about this story was that it struck me as a “Make-A-Wish” story – a story of a child getting an opportunity that they wouldn’t normally, being to live out a dream, as respite from the harsh and ongoing realities associated with life-threatening illness. We know that these kids wouldn’t normally be selected for the opportunity in question, but it’s their dream, and the kids have been through a lot, and who’s going to begrudge a child the fulfillment of a dream when he or she may not make it adulthood and have a chance to make that dream come true on his or her own steam?   I understand (and have always supported) the Make-A-Wish foundation’s mission.

But Michael Mullins isn’t dying, and he’s an adult. As an intellectually disabled adult, there’s a high likelihood that he often gets treated like a child – we see flashes of that in the way that both Fenway and the media talked about him – but he’s an adult nonetheless. If this story wasn’t about a disabled person, I’d bet that the majority of comments on the articles that I looked at (for example, here and here) would be along the lines of, “What makes him/her so special?” instead of, “Fabulous job!” and “Had to skip through so I wouldn’t start crying at work.”

I did consider that Michael Mullins was singing the National Anthem for a game that had been designated to promote awareness for a disability or a disability agency, in which case it would make some sense that they’d choose a disabled person for the job. I used to attend the annual Community Living Blue Jays Game at the Roger’s Dome each year, and a disabled person sang the anthem. Fair enough. That makes sense to me. But that’s not the case here, as far as I can see.

And I can’t recall that the singer at those games was ever introduced as “inspirational”, or a list of their supports being rhymed off into their introduction:

And here to perform our national anthem is an inspirational young man. He is a member of the Michael Lisnow Respite Center, which provides emotional and physical support for people with disabilities and their families. Put your hands together for Michael Mullins.”

Regular readers know how I feel about the word “inspirational” and disabled people. And while there’s nothing wrong with attending a respite center (and the announcer may have been following a convention of putting the singer’s name at the end of the introduction), his disability had to be the focus, even before his name?  There was nothing else that they could have emphasized, like the fact that he’s been singing the national anthem at local community and sporting events in Hopkinton (where he lives) for years?

As for my gripe with the media, it was about a quote in this article, where Michael Mullins is describing his family’s reaction to the news that he’d be singing at Fenway.

My brother started crying,” he said. (Mullins wouldn’t admit to it, but the staff at the center said he was a little teary eyed as well.)

If Michael Mullins wouldn’t admit to it, he probably didn’t want people to know, reporter Jonathon Phelps. Was it really respectful, in this context, to print what the staff said about his reaction when he wouldn’t admit to it himself?

Like I said, we need to treat to Michael Mullins like the adult that he is.

Michael Mullins – Things to Consider

For the record, I don’t blame Michael Mullins one bit for taking this opportunity when it was offered to him. This was his dream. As far as he was concerned, he and staff at the respite house had been working toward it for years – talking to Fenway, organizing the Facebook petition, practicing. And I don’t for a moment think that the staff or Michael Mullins’ family meant any harm – they were simply trying to make a dream come true for a young man.

But I think that the staff in particular needs to ask themselves what he’s taken from this experience, and what the community’s taken from it.

Did it advance the causes of equality and community inclusion?

Or did it “other” a disabled man (and potentially disabled people generally, by extension) even more so than he already was?

I know what I’d say. But, as I said, I’m feeling cranky.

All that being said, however – Michael did give a lovely performance, and you should check it out:

 

Comments { 0 }

Cry Me a River, Katrina Percy – Justice for LB!

lbI wrote this piece for the blog 107daysofaction.wordpress.com recently. I asked for permission to reprint it here to help raise awareness on this side of the Atlantic about the story. If you’d like to get involved with Justice for LB and 107 Days of Action, please click here


.

I’ve recently been made aware of the story of the death of a young autistic man in the UK that’s not getting any press that I’m aware of in the U.S. or Canada. I’d like to tell you Connor Sparrowhawk’s story.

Connor Sparrowhawk, known as “Laughing Boy” or “LB” to his friends and family, was autistic and, from what I can gather, intellectually disabled (it’s difficult to tell when going by British sources sometimes, as they tend to refer to what North Americans call “intellectual disabilities” as “learning disabilities”).  He also had epilepsy. In an interview with BBC radio, LB’s mother, Sara Siobhan, talks about how when her son turned 18, his normally happy disposition changed:

“When he turned 18 in November, his behaviour sort of…he become very unhappy and anxious. And over the space of those 5 or 6 months, he became increasingly sot of unpredictable in his actions and very unlike himself, and he became very difficult for us to manage. We couldn’t get any help to look after him in school, really, and we were struggling to keep him in school.”

LB punched a teacher’s assistant and became increasingly unsettled. The family felt that they had no choice but to send him to Slade House, a small treatment and assessment facility (seven beds) run by Southern Health NHS Foundation trust.

Sara talked to the BBC about her hopes that the staff at Slade House would be able to figure out what was causing the changes in their son, and that they’d be provided with strategies to manage his anxiety and unhappiness. She feels that Slade House did very little to help either way. But if only that had been the worst of it.

LB was in Slade House for 107 days before he died on July 4, 2013. Sara got the phone call at work from a staff member when LB was on the way to to the hospital, she told the BBC. He’d been having a bath, and been found unconscious. Sara was told when she reached the hospital that doctors weren’t able to revive him.

The portmortem showed that LB had drowned, likely as a result of having a seizure, and was originally declared a death by natural causes by Southern Health NHS trust. However, an independent report found reasons to conclude otherwise, as indicated in this summary of the report’s findings on bindmans.com:

The report, completed by the independent organization Verita, investigated LB’s death and found the following:

  1. That LB’s death was preventable
  2. That there were significant failings in his care and treatment
  3. That the failure of staff to respond to and appropriately risk assess LB’’s epilepsy led to a series of poor decisions around his care
  4. That the level of observations in place at bath time was unsafe and failed to safeguard LB
  5. That if a safe observation process had been put in place and LB had been appropriately supervised in the bath, he would not have died on 4 July 2013
  6. That the STATT unit lacked effective clinical leadership
  7. That there had been no comprehensive care plan in place for the management of LB’s epilepsy and his epilepsy was not considered as part of his risk assessment, in breach of NICE epilepsy guidance

The report follows another, highly critical CQC inspection report published in December 2013 in which the STATT unit failed on all 10 essential standards of quality and safety. Since that inspection report, the unit has been closed to new admissions.

Wow. Doesn’t seem to me like there’s much for the NHS to do but to try to determine what adequate compensation is in this situation (as if there is such a thing, when the death a loved one is involved), determine who was responsible and to what extent, “clean house” of those who were responsible, and commit to reviewing all the policies and procedures that may have contributed to LB’s death…and actually do so, of course.

But these things rarely happen that simply.

Justice for LB!

There’s not enough space today to get into the ways that justice has been put off for LB and his family, although Sara documents it all very well herself in her blog. Even a small facility like Slade House can be just as destructive as the larger warehouse-like institutions that are falling out of favour. It’s all a matter of attitudes and workplace culture. And like most stories involving professional misconduct in an institutional setting, this one gets uglier the more you find out about it.

I’d like to single out one person in particular.

Katrina Percy, chief executive of the Southern Health NHS Trust, doesn’t see why she should resign over this. After all, she’s apologized. She laments the lack of a “culture where people are able to be open when things don’t go as well as they possibly could.”

Cry me a river, Katrina Percy. That might go over if, after careful preparation and planning, LB had tried to go somewhere independently and gotten on the wrong bus to come home (he apparently loved buses). It doesn’t cut it even remotely when a young man with with multiple disabilities and epilepsy dies in the bathtub after a seizure because a medical unit (which turned out to be unsafe for patients anyway) for which you are ultimately responsible left huge gaps in both his care plan and its policies around observation during bath-time. And you don’t get to slam the family with vague comments about “people” not being “open” because you don’t want to take responsibility for this (or for the other two Southern Health facilities subsequently found to have safety failings after Slade House was investigated).

But then, as Chris Hatton has observed, all’s really not been well at Southern Health for the last while, has it? Quite sketchy indeed, Katrina Percy.

It never should have been acceptable for anything like this to happen, but isn’t the era where families couldn’t trust institutional care to meet the basic safety needs of their loved ones supposed to be over? Aren’t we supposed to know better, and act out of a ethos that demands we treat vulnerable people with dignity, and compassionate, responsible, reliable care?

I’m thinking about all the places that I’ve covered in this blog where people got hurt or died because disabled people were considered expendable and just given the absolute minimum of care. The abuses at Huronia Regional Health Centre in Ontario, Canada, happened a long time ago…Willowbrook State School in Long Island been closed for decades…but the New York State group home scandal broke soon after I started this blog in 2011, and the men profiled in the New York Times’ recent “The ‘Boys’ in the Bunkhouse” piece were only removed in 2009 from a horribly abuse group home/sheltered workshop situation that went on for decades.

This must stop.

The next time someone tells you that disabled people aren’t at risk in our society, ask them what they think it would feel like to have a seizure in bathtub full of water and not be able to call out for help.

I know that it’s something that I don’t want to think about.


 

107 Days of Action added this update when they published this piece on April 24, 2014:

Sarah’s thoughts have become even more topical in light of Katrina Percy’s ‘performance’ at the Oxfordshire Learning Disability Partnership Board. See Gail’s brilliant blog posts on this meeting Dinosaurs and Elephants in the Room and How things could have been…and the float that sank.

Then yesterday KP faced more media attention after yet another critical report and a warning notice from CQC, and Monitor announcing they are taking enforcement action against Southern Health. You can read Sara’s latest post, Love tennis in health (and social care) towers, for her thoughts on this latest development.

Comments { 0 }

Judge Rotenberg Center Should Have Shocks Banned – FDA Panel

judge rotenberg centerThursday, April 24, was a day that I’d been waiting for that day for a long time. An FDA advisory panel finally got to thoroughly hear both sides of the story of what goes on at the Judge Rotenberg Center, and to deliberate, based on testimony, whether what happens to the students there needs to be stopped.

And they made the right decision. I just hope that they act on it quickly.

Regular readers may remember that the Judge Rotenberg Center has come up a number of times in this blog, usually in posts talking about terrible ways in which disabled people still get treated by society. It got its first mention in its own blog post, in 2012. I remember reading the article prompting it and thinking, “For the love of all that’s holy…these people give autistic children electrical shocks and call it “treatment?”

“Why hasn’t someone done something about this?”

Judge Rotenberg Centre Faces the FDA

Although disturbing accounts of use of four-point restraint boards, isolation, and food deprivation as discipline techniques have from former Judge Rotenberg Center students, most of the controversy around Judge Rotenberg Center revolves around the use of their Graduated Electronic Decelerators to deliver aversive shock therapy. Aversive shocks, unlike the electroshock therapy used to treat mental conditions like severe depression, are delivered to the skin. A statement from the Judge Rotenberg Center said that the two-second shock, usually delivered to the arms or legs, “feels like a hard pinch but is otherwise harmless and has no side effects.”

Former students, however, have told a different story. One former student described the shocks as feeling like “a thousand bees stinging you in the same place for a few seconds.” Another described flashbacks and nightmares that she has about the shock treatment. The report I linked to at the beginning of this section contains many more accounts of the physical and emotional trauma that the aversive shock therapy has caused.

Gregory Miller, a former teacher’s assistant at Judge Rotenberg Center, left because because of the pain his students were in. The Judge Rotenberg Center received FDA permission in the 1990s to use the GEDs,  but, according to Miller, at least one of the machines, the GED-4, was not FDA-approved. Media accounts (see here and here) support this. The GEDs at the Judge Rotenberg Center are illegally modified to deliver shocks up to three times greater than the FDA-approved limit. The FDA sent them a warning letter about this in 2012.

Had he known that units at Judge Rotenberg Center weren’t FDA-approved, Miller says, he would not have used them on students, despite the treatment plans calling for their use. Lydia Brown has Miller’s letter to the FDA posted on her blog, with his permission (she suggests first reading this letter, from a former Judge Rotenberg Center student, also posted with permission.) Both letters are very difficult to read, but show the disturbing scope of what’s going on behind the walls of this “school”.

Judge Rotenberg Center: The Supporters Speak Up

Supporters of aversive shock therapy, currently available in no other US facility but Judge Rotenberg Center, have said that it’s helped where all other treatments have failed. Parents testified about children in great distress, constantly engaging in self-injurious behaviours like headbanging and eye-gouging, how medicines weren’t working, how restraint was no longer an option. The Judge Rotenberg Center said in a statement:

“Without the treatment program at JRC, these children and adults would be condemned to lives of pain by self-inflicted mutilation, psychotropic drugs, isolation, restraint and institutionalization — or even death,”

But  I tend to agree with Margaret Nygren on this one.  The Executive Director for the American Association on Intellectual and Developmental Disabilities told CBS in an interview that studies have shown that the aversive shocks aren’t going to help in the long run. As soon as the negative reinforcement is removed, the behaviour returns.  Given everything that we know now about the intense frustration involved with not being able to communicate needs as simple as “I’m hungry” or “I’m in pain”, there’s no reason to continue a practice that, more and more, is being shown that it causes more harm than good and that doesn’t work in the long run anyway (see this article for more explanation).  As Nygren explains, we have to concentrate on getting to the root causes of behaviours, concentrate on communicating more effectively, and provide those that can’t communicate using in ways that we’ve traditionally been able to understand ways of effectively doing so.

It’s more work than using a GED. But I’d hope that people educating disabled children would want to do the work. I’d hope that people who said that they had children’s best interests at heart would not *want* to torture them.

Besides, there’s shocking students who are putting themselves and others in danger for when nothing else (apparently) works, and then there’s this:

“But the student told the FDA he received shocks “for things like noncompliance with staff direction, talking too much and being disruptive in class.”

Other former students testified that they also were shocked for minor transgressions. That’s not about keeping people safe. Cheryl McCollins, whose son Andre was shocked 31 times in the course of 7 hours, at Judge Rottenberg Center, at first for just refusing to take off his coat, said it best: “This is not about therapy. This about control, abuse and torture.”

Bottom line? Find another job if you think that giving electrical shocks in the face of “noncompliance” is acceptable, because you don’t belong in one where you have any access to children or members of other vulnerable groups.

Judge Rotenberg Center: Why Has This Been Allowed to Continue?

I clearly remember from my research methods classes that I took for my Psychology degree and the Behaviour Management classes that I took for my Developmental Services Worker certification that there are some things that you just don’t do, in the name of either, to humans (or animals, for that matter). I doubt that most ethics boards would let you get away with research involving shocking most animals, let alone humans, to see how it made them behave, not in this day and age. Judge Rotenberg Center has even admitted that they can’t test the GEDs as much as they’d like because of ethical concerns. So there are no ethical concerns with using equipment that hasn’t been tested as fully as they’d like on children and youth that, in some cases, can’t even clearly communicate how they feel about what’s being done to them? L.A. Markham discusses some of the other implications of this position in her article about the Judge Rotenberg Center.

This may have started off with the best of intentions, but it’s gotten seriously out of hand, under the watch of people who are supposed to be looking out for the best interest of the students at Judge Rotenberg Centre in particular, but also the safety and human rights of children in general, and despite the efforts of politicians like Massachusetts Governor Deval Patrick and Senators Brian Joyce and Tom Sannicandro. Even the UN has weighed in, declaring the use of the GEDs torture.  And yet, use of the GEDs still hasn’t been outright banned.

Why not? If non-disabled kids in a public school were being shocked into submission, people would (rightly) raise ten kinds of hell. You can count on it.

The only reason that I can think of for why this abuse has gone on for so long is that these are disabled kids and, and that when people hear that receiving an electrical shock is the “only way” to get a disabled child to behave, they accept it as a reality that can’t and shouldn’t be questioned. A sad reality, yes. But just the way it is, the way that people used to think that disabled people belonged in institutions because “that’s just the way it is.” And *that* idea really scares me, because it tells me that society hasn’t changed its view of developmentally disabled people all that much since those days. It’s easy to understand why Goodwill got away with paying disabled people pennies an hour to work for so long, considering that a school that purports to be devoted to the well-being of disabled children thinks that electrical shock as a behaviour management tool is acceptable.

As I said, the advisory panel made the right decision. They will recommend to the FDA that the GEDs be banned.

Let’s hope that everyone involved here does the right thing and makes it a reality.

FDA Summary of the April 24 Hearing

Greg Miller’s Petition to Make Aversive Shocks Illegal – Please sign!

 

Comments { 2 }

Stop Copying Plugin made by VLC Media Player