Tag Archives | social attitudes

Update: Joe Scarborough Clarifies Comments Regarding James Holmes and Autism

Joe Scarborough’s reaction to criticism from autism advocates about Joe Scarboroughhis statement on James Holmes’ shoot-out in Aurora, Colorado last week may been prompted by an autism diagnosis was quick. The commentary was made on Monday’s edition of MSNBC’s “Morning Joe”, and Scarborough issued a clarification the next day.

http://www.examiner.com/article/joe-scarborough-issues-statement-clarifying-comments-on-autism-aurora-shooting

I don’t know.

You Never Get A Second Chance to Make a First Impression, Joe Scarborough

I don’t get MSNBC. I’ve never watched “Morning Joe”, and until yesterday I wouldn’t have known Joe Scarborough if I’d fallen over him.

So what are my impressions now?

I remember thinking when I first viewed the video of Joe Scarborough’s now-infamous “autism commentary” that he was rambling toward the end. It felt to me like he’d lost his focus. I heard him talking about the challenges of raising a child with Asperger’s Syndrome and thought, “He’s close to burning out. It’s hard for him to talk about this.” It felt to me, after listening to the video several times, that there was a point where he stopped talking about James Holmes and Aurora and started talking about the stress of supporting a family member who just doesn’t fit into society very well.

But take a look at these sentences: “Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale. I don’t know if that’s the case here, but it happens more often than not.” I don’t know how to read this any other way than:

  1. Scarborough believes that the type of socially-disconnected individuals that conduct mass-shootings are more often than not somewhere on the autism scale (there’s no evidence to suggest this.)
  2. Scarborough’s point in bringing all this up is that he believes that James Holmes could possibly be on the autism spectrum.
I suppose that it could be a matter of unfortunate juxtaposition of comments about two separate things: Joe Scarborough’s list of the characteristics that he believes mass-shooters  possess, and autism as an example of a mental health disability that causes isolation and requires a strong support system. But if that’s the case, it’s a very unfortunate juxtaposition, to the point of being unprofessional for a news commentator; Joe Scarborough owes people with autism not just a clarification, but an apology for linking James Holmes and autism in such a way that people who don’t know better walk away after hearing his words saying, “I didn’t know that autistic people could get violent like that…I’d better be careful.”
I’m also not impressed with a bit of “victim-blaming” that I see going on in his clarification. I went through the responses to Joe Scarborough’s remarks that I could find from the major autism advocacy groups, from some well-known journalists and disability bloggers, and what I could find in the media online. I never heard anyone say that he linked “all violent behaviour” to Asperger’s. I believe that’s a significant overstatement, and to say directly afterwards that those who did make that suggestion “missed my larger point and overlooked the fact that I have a wonderful, loving son with Aspergers” is just obnoxious. Here’s a tip on trying to make peace with people that you’ve insulted, Joe: Don’t insult them further by suggesting that the whole affair was their fault.

Bottom Line for Joe Scarborough

You’ve clarified. Now apologize. You’ve got nothing to lose and it really is the right thing to do.

 

 

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We Need a New Word for “Disability”

I’m stuck on terminology. I’m becoming increasingly disillusioned with the  disability word “disability”.

In my last job, I worked hard with the people I supported to help them realize that they had disabilities and to realize what that meant in their lives. I did this  for two reasons:

  1. The agency’s terminology of choice was “intellectual disability”, in consultation with self-advocates.
  2. “Disability” is so widely used that people really do need to know what it means for them. They need to be able to say, “I have a disability and because of it I need…” and they need to understand “disability” in order to understand and makes decisions about applying for supports that may be available to them.

I didn’t realize until recently though, that I just don’t like that word “disability” anymore. I’ll probably still use it, just because it’s such a socially recognized word, and I’m not sure yet what word I’d use to replace it. But I’ve really started to think about it.

Musings on “Disability”

My arm and leg may work a bit differently than everyone else’s, but they’re still “abled”.  Some of the people I’ve worked with have been plenty more “able” in some areas than I have , even before the stroke – better dancers, better bowlers, even better cooks. And even  though I’m a mediocre dancer, a terrible bowler and can barely cook a thing, I’m not “dis-abled”. In many areas I’m very “abled”.

But what do we replace “disability” with? I was struck by “diffability” when I first heard it, but rejected it for the same reasons that I have “differently abled”: It sounds like we’re trying too hard to put a positive spin in the wrong direction on disability. “Disability” could use some positivity associated with it, but it doesn’t need a spin implying that people with disabilities are different than everyone else.

Besides, everyone is “differently abled” when compared with the people around them. My sister had trouble writing essays in high school, when that was something that came very easily to me. I struggled with math, when that came easily to her. The fact that we’re all differently abled and have opportunities to use our strengths to contribute to society is a good thing, but that aspect of “differently abled” doesn’t come out in the way it’s used now.

“Disability” – What We Need

We need a word that:

  1. Conveys the importance of focussing on commonalities, not differences
  2. Stresses focussing on what people can do, rather than what they can’t do
  3. Uses positive phrasing.

Socially, it should also be a word that we’re prepared to make obsolete. Because if there’s anything I’ve learned about working with people with disabilities for so long, and living with disabilities myself, it’s that the things that *really* disable people and keep them from living “normal” lives are external to them. The barriers that create “disability” are out there in society, and society needs to become prepared to tear those barriers down:

  1. Make buildings/websites/transportation/processes more accessible.
  2. Design supports so that people with disabilities had a better shot at employment, education, income support and appropriate housing.
  3. Make our communities places in which everyone can participate fully and safely.
  4. Open peoples’ minds and hearts and find ways to change attitudes that disable people.

Let’s make the dream to eliminate “disability” and any other words for it completely, so that we all just become people with different strengths and needs trying to live together. Because, really…isn’t that what we are already?

On a totally unrelated note, I’m now writing articles about one-handed living over at Zujava. Check out the first in the series:

http://www.zujava.com/living-the-one-handed-life-general-tips

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UN Investigates Whether Torture is Happening at Judge Rotenberg Center

I clearly remember debates, as recently as since Obama’s come into power, Judge Rotenberg Centerabout whether the US uses torture to get information from suspected terrorists, and the ethical implications of doing so. It dominated the news for a while. Americans were really concerned about this question.

Why, I wonder, haven’t we been so concerned about the torture *definitely* going on (in my opinion) right under our noses at the Judge Rotenberg Center for children with autism?  I don’t know what else you call restraining a child face-down for seven hours for refusing to take off his coat and shocking him 31 times for tensing his body and yelling.

All Part of Judge Rotenberg Center’s Treatment Plan

This was part of Andre McCollins’ treatment plan. Even though it left him catatonic and put him in the hospital for nearly 6 weeks, Judge Rotenberg Center stood by it’s actions and fought against a bill that would prevent it from using aversive shock treatment.

The 2002 video that brought all this to light (which Judge Rotenberg Center fought to repress), was made available to the public in April. Some of the footage is here. Be warned that it is difficult to watch:

http://www.youtube.com/watch?v=UcQwsq-PKCg&feature=fvwrel

A US Senate Committee held a hearing into the aversive therapy used at the Judge Rotenberg Center, and the UN has been asked to rule on whether what’s happening at the Center is torture.

http://www.myfoxboston.com/story/18840703/2012/06/20/un-investigating-judge-rotenberg-centers-use-of-shocks

Judge Rotenberg’s reaction to this? The Parent Association said:

“We are outraged that these people would use our vulnerable children as pawns. The right to choose the appropriate and safe treatment for our children, when nothing else has worked, must remain an option for the small percentage of children for whom this is a matter of life or death,”

Judge Rotenberg’s response to all the attention it received from the 2002 video of Andre McCollins is here, for what it’s worth: http://www.judgerc.org/

And the government ultimately sided with them. The proposed shock ban was left out of the state budget, and the Judge Rotenberg Center can continue to use shock treatments for therapy.

Meet Me At Camera Three, Massachusetts Government

I’m sure that no one will be surprised that I call “bullshit” on all this. We treat our prisoners better than we’re treating these kids. Refusing to take off your coat is not a matter of life-or-death. Even if we lived in a world where you could justify shocking a kid because of that behaviour, you can’t justify retraining them for seven hours and shocking them 31 times. And I don’t really care that most children in treatment at the Judge Rotenberg Center don’t get shock therapy treatment. One child getting treated the way Andre McCollins did is one child too many.

Shame on you your endorsement of the continued abuse of children with disabilities. I hope that the UN says unequivocally that Judge Rotenberg Center is torturing these kids and shuts the place down. Shame on you too, administrators of Judge Rotenberg Center. I’d like to know how you sleep at night, knowing what goes on in your facility.

Okay, I’ll Stop Here

You get the point. Probably best to just stop here before I say something I really regret.

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Goodwill Industries…Champion for the Disabled Worker! *rolls eyes*

The National Federation of the Blind in the United States has called for people to boycott goodwill industriesGoodwill Industries International. This story actually broke about ten days ago, so many of you likely already know about it.

The Issues Behind the Call to Boycott Goodwill Industries

The issue around the call to boycott Goodwill Industries is that the National Federation of the Blind had discovered that Goodwill had been paying some of its workers with disabilities significantly below minimum wage – as low as $1.44 an hour. Apparently it’s permitted to do this through a nearly 75-year-old provision of the US Fair Labor Standards Act. The National Federation of the Blind is seeking to have this provision repealed, supported by 45 other organizations in the United States. But it’s taking more immediate action through the call to boycott Goodwill Industries.

I hope that they can find some way to get it into legislation that people with disabilities have to be paid minimum wage. I know that from watching the struggle in Ontario to get businesses to pay people with intellectual disabilities minimum wage that until recently, success has varied from region to region and business to business. Especially in towns made up of mostly small businesses that don’t have a corporate policy dictating hiring practices and may not have a lot of money to spare.

Work is Work and Employees are Employees. Period.

I’ve seen people with intellectual disabilities do a lot of different kinds of work.  People I’ve worked with have cleaned tables and taken out the trash in restaurants, stocked shelves in grocery stores, done cleaning in a variety of establishments, answered phones for businesses, and  even started their own businesses like walking dogs and doing housekeeping.

Sometimes in those days (as it is now), it was appropriate for someone with a disability to go do a job and charge a flat rate for their services. I remember working with a woman who got $15 a week from a local business to come do their cleaning each week. It took her about hour. That was reasonable compensation for her time and effort.

However, in those days I also saw people with intellectual disabilities go into businesses to help out with activities that were required to keep the business running, such as facing shelves, and not get paid or get paid very little. That’s not appropriate or fair. The employees were expected to face shelves. Having someone do it freed up their time to do other things. That made the work that these people with intellectual did an important part of store work, for which they should have been compensated properly (at the minimum wage)…even if it was the only thing they did as an employee and even if they did it for only an hour a week.

Yeah, I’m Taking This Personally

Those days weren’t so long ago…but it’s gotten a lot better. The tide’s turned quickly on this one (at least in Canada, and at least from what I can see). I’m really grateful that it’s gotten easier for people with intellectual disabilities to earn a decent wage.

But am I offended by this type of nonsense coming from Goodwill Industries? You bet I am. I’ve focused on intellectual disabilities so far, but everything that I’ve read about Goodwill Industries’ discrimination has been about people with disabilities in general. And I’m a person with disabilities.

Goodwill Industries, Meet Me at Camera Three

Hi Goodwill. As a person with disabilities, I’m really insulted that you think that my time and energy is worth so much less to you than those of a person without disabilities. I’m angry that you think it’s okay to pay me slave wages because I have a disability. And I’m furious that you think it’s okay to contribute to the further social devaluement and hardship of a group that’s already socially and economically vulnerable.

I’m not naive enough to think that this sort of thing still doesn’t happen. But, considering what you do, you were one of the last organizations that I would have suspected of doing it.

You’ve got a lot of damage repair to do. Better get on it.

 

For Readers Outside the US: I can’t find any information about Goodwill’s hiring practices in other countries, or whether advocacy organizations in other countries are supporting the boycott to ban Goodwill Industries. Does anyone have any information?

 

More about the call to boycott Goodwill Industries:

http://www.nfb.org/national-federation-blind-urges-boycott-goodwill-industries

http://www.disabilityscoop.com/2012/06/12/goodwill-paying-less/15827/

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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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Rabbi Boteach Talks About Children With Disabilities

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

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

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

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

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

What I Like About Rabbi Boteach

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

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

Rabbi Boteach and I Disagree…

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

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

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

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Blogging Against Disablism Day

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

What is Disablism?

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

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

The Disablism of Overprotection

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

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

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

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

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

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

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

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

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Britain’s “The Undateables” Explores Disability and Dating

The Undateables  - I didn’t know how to react. I’ve always found British television to be very edgy

The Undateablesand imbued with a humour that American and Canadian television just can’t seem to replicate (for example, the British version of The Office, which predated the American version and is howlingly funny – and I’m a fan of the American version as well). Is naming a reality television show about people with disabilities trying to find love another example of this edginess? Or is it just a poor, poor choice of title for a show that’s a step backward for people with disabilities?

Who are The Undateables?

I couldn’t access clips from the episode that has aired already, but I read the descriptions of the three episodes that air this season. The first episode follows three people on at least one date:

  • Richard is an amateur radio enthusiast with Asperger’s syndrome. He will only date women who live within a five-mile radius of his home, and won’t eat on a date.
  • Luke, a stand-up comedian with Tourette’s syndrome, is scared to date for fear that his disorder might cause him to call his date an insulting name.
  • Penny has brittle bone disease. A trainee teacher who has never dated, she is 3’4″ tall. Her  ideal man is 6’0″.

Future episodes of The Undateables include an amateur poet with learning disabilities, a skateboarder with facial disfigurements, and a student with Down’s Syndrome.

Reactions to The Undateables

Many people, both with and without disabilities, found the billboard campaign that Channel 4 used to advertise The Undateables very insulting. The title of the show, and the implication that people with disabilities are “undateable” seemed a huge issue among the people that left comments on Channel 4′s website about the show’s first episode. However, most people seemed willing to at least watch it, and that’s where the viewership became more divided. While the majority of commenters seemed to feel that The Undateables could be very useful in breaking down stereotypes about people with disabilities and dating, others argued that the show was humiliating for and exploitative of those involved , more focused on getting ratings through controversy than educating people about disabilities, and naive in its presentation of the issues that people with disabilities face on a daily basis.

Even the press seems divided. Samir Raheem of “The Guardian” used the word “ridicule” when talking about how The Undateables treated its participants in the first episode. From the way he described the episode, it sounds like I’d agree. The show apparently referred to the participants as “extraordinary singletons” and the dates with whom they were paired as “extraordinary people”; “In the world of matchmaking, people with disabilities can be a hard sell,” Raheem reports the voice-over saying; finally, the show seemed to make it a point to pair the participants with other daters with disabilities (as if we can only date “within group”), or with people that would set the participant up for failure, such as the dater that found Luke’s Tourette’s funny and was disappointed when he didn’t call her a name. For Luke, who believed that the Tourette’s wasn’t necessarily the problem, but more his extreme shyness around women, that’s only going to cause a scenario that practically ensures that Tourette’s would become an issue.  Read Raheem’s entire review here of the first episode of The Undateables here:

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

Lucy Mangan of “The Guardian”, however, felt that The Undateables was “kindly, thoughtful, and full of inadvertent comedy”, and not at all exploitative. She felt that leaving in bits like Richard putting on far too much aftershave and then  explaining that “when you’re going out on a date, you’ve got to be sure,” was less patronizing than leaving them out. I disagree. It’s one thing to have a camera follow you around on a date. It’s quite another to have people point out grooming faux pas that, because of your disability, you might not realize you might be making, and include it in a matchmaking program. It *is* patronizing, and the role of people with disabilities in our society is not to make us smile nostalgically and say, “Wow, I did that once…poor bastard.”

Which leads me up to things being inadvertently funny. I know from working with people with intellectual disabilities that they sometimes do things and have conversations where they don’t mean to be funny, but are. It does happen. But the key there is, “they don’t mean to be funny”. So you don’t laugh. Because no one likes to be laughed at because they misunderstood how to say or do something.  It’s not “kindly” or “thoughtful”.

Read Lucy Mangan’s review of the first episode of The Undateables here: http://www.guardian.co.uk/tv-and-radio/2012/apr/03/the-undateables-horizon-tv-review?newsfeed=true

The Undateables airs twice more in the UK. I’m hoping that it doesn’t have a second season, let alone an American version.

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The New York State Group Homes Situation

I found an awesome commentary on the New York Time’s “Abused and Used” series that I thinkNew York State group homes should be required reading for everyone. I think that you can get the message without having read the articles, but for those who like a bit of backstory: The “Abused and Used” series examines a review that the New York Times did on some previously unreleased data about the mortality rates in New York State group homes for people with intellectual disabilities. The Times found that in the last decade, 1200 deaths have in state and privately-run New York State group homes have been attributed to unnatural or unknown causes – that’s 1 in 6. And that number is the start of a story of abuse reports, poorly-trained workers, lack of safety protocols (and little or no review of safety protocols when a death happens) and little accountability for residents’ safety in New York State group homes that just made me feel sick.

http://www.nytimes.com/2011/11/06/nyregion/at-state-homes-simple-tasks-and-fatal-results.html?_r=2&pagewanted=1

What the New York State Group Homes Situation Tells Us

There’s obviously something in our society that’s still very apathetic toward people with disabilities, or the situation in New York State group homes would not have happened – some governing body would have seen what was happening and snapped to attention long before it got to this point. I like Zoe Wool’s take on it (this is the required reading I was talking about earlier):

http://savageminds.org/2011/11/06/valuing-life-death-and-disability-sorting-people-in-the-new-york-times/comment-page-1/#comment-708957

The problem is (and the family of  one the residents who died also said this; see link to article in the first section) is that we don’t value people with disabilities in our society. Wool suggests it’s because we value people with disabilities relative to what kind of contribution they make (or made), rather than on their inherent personhood, to the point it determines how we speak about them.

Or whether we try to assist them to have a life or,  just try to keep them alive.

That sort of difference shouldn’t exist. Everyone with a disability should have access to the resources that they need to not only live safely and with dignity, but to have equal access to the community and opportunities to build the life that they desire that people without disabilities do. We don’t need further inequality lines within the disability community itself.

What to Do?

This is why we have to whole-heartedly support efforts by people such as Nicky Clark to stomp out disability hate speech. Because when you can call people with disabilities disgusting names, it’s not that much further to believing it’s okay to do things like slack off on those boring, inconvenient little things that you have to do in your job to keep them safe (like make sure food is cut up small enough so they won’t choke and then actually stick around to see that they don’t choke while they’re eating; see link to article in the first section), and just a bit further to justifying withholding food. I don’t know how people get to the point where they physically and/or sexually abuse residents, but apparently plenty of both was going on as well, rarely reported to police, and dealt with internally by moving the abusing staff to another home where they would abuse again.

http://www.nytimes.com/2011/03/13/nyregion/13homes.html?pagewanted=1

And I don’t know why people like this even want to work in group homes, or how they get past the interview process, but obviously in the New York State group homes a whole lot of them did…and now we’re seeing what happens when they get shuffled from house to house instead of fired and when the system doesn’t have enough safeguards to make sure the damage they do doesn’t happen again.

It makes me wonder how many other states this sort of thing is happening in… :(

Archive of the “Abused and Used” series about New York State group homes:

http://www.nytimes.com/interactive/nyregion/abused-and-used-series-page.html?src=tp

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Living with Spinal Muscular Atrophy in India – Guest Blogger


Today we have a guest post by Pratyush Nalam. Pratyush lives in India, where attitudes toward integrating people with disabilities into society are much different than they are in Canada and the United States. Thank you, Pratyush, for sharing your story with us,

Being differently abled – An Indian Point of View

Hello everyone!! I am Pratyush Nalam, an 18-year old guy living in Mumbai, India. I have just finished high school and entered college for my undergrad. It is wonderful of Sarah to allow me to share my story on this blog.

I suffer from a disability called Spinal Muscular Atrophy (SMA) which is a neuro-muscular and genetic disorder. It essentially means that I cannot walk due to the general weakness of my muscles. I also cannot lift any weight heavier than a one litre bottle. I am confined to a wheelchair and cannot move on my own. This disorder has no cure so I will never be able to walk.

Nonetheless, this hasn’t stopped me from doing anything and I always live life to the fullest.
My parents have been a pillar of support for me and have ensured that I don’t miss out on anything in spite of my disability. They have fought for me to get admission into normal schools. You might find this surprising being in the West, but it is a different story here in India and other developing countries. Schools are reluctant to give admission to students like me because an additional responsibility is placed on their head. This is in contrary to Europe and America where schools are positive about admitting any type of students and go to great lengths to ensure the child is taken care of even if he has special needs. Nevertheless, I must add that I am grateful to the schools I have studied in. They have taken good care of me and I am really indebted to them.

Challenges in Society

Living with a disability here in India (or any developing country for that matter) presents its own set of challenges. The first and foremost is accessibility. This has been the single biggest problem for me right throughout my life. You have steps everywhere but ramps will be present only in a few places. It is a great headache every time I go out. I have to think twice before going out whether it is for a movie, for shopping or just to have dinner at a restaurant. This is the reason I have always used a manual wheelchair instead of a motorised one. Life is much simpler because manual ones are lighter and it is easier for people to life when there are steps.

Another major issue is the attitude of the people themselves. People look at you in a different light whenever they see you in a wheelchair. They show unnecessary sympathy but no empathy. Moreover, you get all sorts of stares when you go out. You get the why-is-this-guy-in-a-wheelchair look as if it is a sin to be in a wheelchair and not be able to walk. There are even people who think that there is something mentally wrong with me. I have had persons asking my parents if I can hear and talk! I mean what nonsense is this! It is a Herculean task to make people understand that I only have a physical disability and my mental facilities are in perfect, working condition.

The Importance of Attitude

These challenges are faced on a day-to-day basis not just by me but anyone who faces a physical disability. Awareness among the common man is extremely low in such issues. Anyway, now I have entered college. I study at the Indian Institute of Technology, Bombay in the field of Computer Science Engineering. The field of technology has been my passion since childhood and hence, I have chosen the aforementioned branch. The institute has been very kind to me and they have been provided me with a motorised wheelchair to travel within the campus as distances on campus are very large. Ramps are present at most places and they have promised to build the remaining ones so that I don’t face any difficulty.

Living with a disability has not stopped me from living life just like anyone else but with some modifications. Life has been generally good and I am grateful to God for whatever I have. I also thank Sarah for allowing me to contribute to her blog. I also blog at  http://reflectionspn.wordpress.com/. It is a more general blog and I blog on all topics. You are free to contribute to my blog too. You can contact me at reflectionspn@gmail.com  or follow me on twitter at http://twitter.com/pratnala.

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