Ableism in Britain’s NHS – Ian Shaw Put in Palliative Care with a Treatable Cancer

Ian Shaw, a 35-year-old disabled British male, is recovering nicely from testicular cancer. He’s fortunate; if Dr. Justin Wilson hadn’t stepped into his case, ableism within Britain’s National Health System might have prevented Shaw from getting chemotherapy.

"Ableism" written in white block letters on a brick wall. Keyword: Ian Shaw

Image Description: “Ableism” written in white block letters on a brick wall.

Content Note: Ableism, cancer, child death, euthanasia, medical model of disability, organ donation, parent killing child with disability

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Ian Shaw is autistic, intellectually disabled, and doesn’t communicate using words. He has epilepsy. He’s spent most of the last decade in secure units because he has behaviours that are difficult to manage, but his parents fought to get him moved into a community residential setting, and eventually got him a placement.

A few months after moving, he was diagnosed with advanced testicular cancer. Shaw’s family blame the staff at his previous placement that the cancer was not detected sooner – he’d apparently had a testicular swelling treated the year before, but no follow-up had been done.

Ian Shaw received his cancer diagnosis in December 2016. By February 2017, the tumor had grown so large that it was affecting Shaw’s spine, making him unable to walk. Doctors at Luton and Dunstable hospital said that, given the rapid downturn in his condition, they wouldn’t be able to start the planned chemotherapy treatments, and declared his condition terminal. Shaw went to live with his family and receive palliative care in their home.

Enter Dr. Wilson, a psychiatrist who has studied cancer treatment in intellectually disabled people.

Ableism in Ian Shaw’s Treatment

Knowing that testicular cancer is very treatable with a high rate of success, the story puzzled  Wilson.  Statistics support his position:

“For men with cancer that has spread to the lymph nodes in the back of the abdomen, called the retroperitoneal lymph nodes, the survival rate is about 96%. But, this depends on the size of the lymph nodes with cancer. For men with cancer that has spread outside the testicles to areas beyond the retroperitoneal lymph nodes, the survival rate is 73%. About 11% of testicular cancer is diagnosed at this stage.”

Given that Ian Shaw’s tumor was affecting his spine, even if we assume that the survival rate was even 60%, why the assumption that there was no point in trying a course of chemotherapy for a cancer that statistics show does respond readily to it?

Dr. Wilson’s theory was that there was some ableism involved, as he told the BBC:

“My concern was that perhaps judgements were made about the quality of life that he has because of his severe learning disabilities and because of the physical impact of how the cancer has spread,”

He was also concerned that the challenges of administering chemotherapy to someone with Ian Shaw’s behavioural challenges were making the hospital reluctant to offer treatment. He requested to be put in touch in with the family, who got a second opinion about treatment for Shaw after talking with him.

The University Hospital Trust for Luton and Dunstable Hospital said that Ian Shaw’s disabilities weren’t a factor in the decision to put him on palliative care, but the proof seems to be in the pudding on this one:

  • Shaw is receiving chemotherapy at the Royal Marsden Hospital – he is put under anesthetic while it happens. Not a perfect solution, but it allows it to happen
  • The tumor is shrinking  – Shaw now uses a wheelchair
  • A young man who had been told he was going to die within months has hope

If Ian Shaw was indeed refused treatment initially because of his disabilities, it was because of this medical model of disabilities that tries to tell us that “quality of life”,”quality of contribution to family/community/country”, and “quality of relationships” need to fall within narrowly-defined, highly subjective parameters in order to be “valid”. It’s a way of looking at people, community, relationships, and the world that it seems like we should have grown out of by now, quite frankly.

The Importance of Confronting Ableism

It’s not just Britain. We know that disability affects whether or not someone gets an organ donated to them in America, and whether people are granted permanent residency in Canada. We know that it was also in Britain where the courts gave a hospital permission to kill Nancy Fitzmaurice, who didn’t have a terminal illness and who was breathing on her own with no life support; she was twelve years old.

Any person could become disabled at any time. It’s important for all disabled people to know that these ableist attitudes exist within our systems, so that they can be prepared to fight them if they have to, especially  when they’re dealing with agents of systems (medical system, legal system, judicial system, etc.)

Ableism kills. We must never become complacent.

Read More about Ian Shaw’s Story

Utilitarian Thinking and Ableism

Two profoundly ableist articles had the disability community buzzing last week. Because of their subject matter, scope, and implications, it feels like many more articles were released, but it really is only two.

Content Note: Discrimination, Infanticide, Rape, Rape Culture, Systemic Ableism

"Ableism" written in white block letters on a brick wall. Key word: Peter Singer

Image Description: “Ableism” in white, block letters across a brick wall.

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The first article discusses ethicist Athur Caplan’s argument for a blanket policy that organ transplants not be granted when people have “disabilities that impair you so that you cannot have any quality of life.” He used being in a “permanent vegetative state” as an example, but conceded later that people with Down Syndrome should be eligible for transplants because “they enjoy life,” and “they contribute to their families, and their families enjoy having them.”

Well, that’s very gracious of him.

What I do like about Arthur Caplan’s article is that, while he does take a stance on his position with which I’m uncomfortable, he also puts out a call for dialogue about where the line at which organ transplant should cease to be granted (and while disabled people aren’t mentioned specifically, he does recommend that disability groups and the “transplant community” be involved), and a fairly comprehensive list of talking points. I think that disabled people and their advocates have plenty of talking points to add, but I’m going to get to that.

I think that this was one of the most important talking points on his list, from a paper by SD Halpern and D Goldberg that recently appeared in the New England Journal of Medicine: “Some healthcare professionals contend that cognitive function should not be a basis for allocating organs because it allows healthcare providers to decide that some lives are more valuable than others.” We know from the organ transplant denial cases involving Amelia RiveraPaul Korby, and Lily Parra that this is already happening.

I want to move on to the next article and come back to this one.

Peter Singer, Disabled People and Rape

The other article that grabbed the disability community’s attention this week was about philosopher Peter Singer’s recent editorial in the New York Times about the Anna Stubblefield case. Anna Stubblefield was a professor at Rutgers University when she had sex with a disabled student, D.J., and was charged with rape. She was convicted in 2015.

Nathan Robinson’s “Current Affairs” article about Peter Singer’s editorial is very good and should be read in whole. It shows how Peter Singer actually argues that in the court proceedings for the Anna Stubblefield case, D.J. was treated in an unfair and ableist manner. Writer Astra Taylor interviewed a disabled woman who was in the courtroom during the trial and who absolutely agrees with Peter Singer.

Robinson’s article doesn’t explain, however, why Peter Singer then couldn’t leave well enough alone and suggest that if a person is intellectually disabled to the point where they don’t understand consent, they can’t withhold it, and therefore they’d presumably enjoy sex whether it was forcible or not. D.J. couldn’t speak, but even if they presumed an intellectual disability, Peter Singer posits, he must have liked the sex because he wasn’t struggling.

It reminds me of the 2014 case in Georgia where Judge Christopher McFadden overturned the “Guilty” conviction for a man that raped a woman with Down Syndrome three times in 12 hours because she didn’t “act enough like a victim.”

As Robinson says:

“The New York Times therefore just published a philosophical defense of raping disabled people, and Peter Singer has — somehow — reached a new low on disability issues. (Actually, to be precise, an argument that it’s not clear what the harm is in raping disabled people, along with the implication that non-consensual sex acts against physically and mentally incapacitated people aren’t actually rape anyway if the victims do not know what consent is.)”

Peter Singer’s argument is disgusting, but not unexpected. He has in the past:

  • Debated whether it might be moral to kill disabled babies, and decided that in some cases it might be immoral to let them live.
  • Said he couldn’t raise a child with Down Syndrome because it wouldn’t make him “happy” not to raise someone that would be his “equal”.
  • Suggested that the lives of intellectually disabled people are worth less than those of non-disabled people.

Peter Singer is a utilitarian philosopher. It’s important to note that, not just because of the reasons (outlined by Robinson in his article) that utilitarian thought just doesn’t work well when you use it to discuss people, but also because it makes so many damn assumptions.

And we all know how much I love those.

Utilitarian Thought and Assumptions

Let’s go back to Arthur Caplan’s article for a moment.

Because there aren’t nearly enough donated organs to meet the demand for them, the approach to how people get them has always been somewhat utilitarian, to make sure that they go to people who need them the most, who will get the most use out of them, and who will follow the post-transplant regimen properly. It’s unfortunate, but difficult decisions need to be made when allocating scarce resources.

However, there’s an assumption at the foundation of Arthur Caplan’s argument that intellectually disabled people are in a different class than non-disabled people. Not only should their suitability depend on the practical criteria outlined above, but also on a determination that it’s worth keeping them alive to begin with: Do they “enjoy life”? Do they “contribute to their families”? Do their families “enjoy having them?”

Utilitarian thought claims to be logical, but it’s so rooted in ableist assumptions that it’s downright dangerous when it’s applied to disabled people.

If you could go along with Arthur Caplan’s reasoning and (apparently) believe that those criteria are even remotely fair to propose, how would we measure how well they’re being met? What evidence of being “enjoying life” would a transplant team be willing to consider? Who does a person have to make “happy” to be considered? What barriers to potentially enjoying life (or to expressing that enjoyment?) should be taken into consideration? What does it mean, to “contribute to a family”? Does family have to be biological, or could it be friends? Should those two types of families be weighed differently, and how? What about people who, through no fault of their own, have seen little or nothing of their families and haven’t had the chance to make that many friends (like those that have been instititionalized for most of their lives)?

Is it right to assume that, in the absence of information from the person, that just because they can’t have what a non-disabled person considers a good quality of life, that they’re unhappy and wouldn’t want their life prolonged by an organ transplant?

Utilitarian thought claims to be logical, but it’s so rooted in ableist assumptions that it’s downright dangerous when it’s applied to disabled people.

Peter Singer assumes that there’s no harm when an intellectually disabled person who doesn’t understand consent and doesn’t struggle is raped. He can’t know that. He can’t read minds. He assumes that a low IQ = no inner life. As a bioethicist, he should know better. His assumption that everyone responds to rape by struggling is easily refuted. I hope that by now someone’s made him aware of just how ignorant he sounded.

I’m willing to believe that Arthur Caplan actually wants to do some good, even if he’s misguided, but I suspect that Peter Singer is really just an ableist fuck who tries to use ethics to justify his positions. And I’m sorry that the New York Times saw fit to print his tripe without a balancing article correcting his assumption about how rape could affect an intellectually disabled person, and that advised that lack of consent doesn’t imply consent. Don’t have sex with someone if you don’t have their consent, period.

Bottom Line

As icky as these articles are, I’m not all that shocked by them.

I wish I was.

It’s just not a shock anymore to that these attitudes like these are still out there. It’s disheartening, though, to always come up as the option that’s not as preferable in these utilitarian reasonings, especially when the ableism is so obvious and especially when it affects resource allocation and safety on even as a hypothetical.

True equality still seems a long way off.

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Rest in Peace, Anthony Corona

I’ve just heard about Anthony Corona’s death in December. I have thoughts.

When I was in school to become a Developmental Services Worker, which is the certification most preferred by the Ontario government for those who work in support positions with intellectually disabled people, the curriculum didn’t include Crisis Prevention Institute’s Non-Violent Crisis Invention certification that most agencies required in staff at the time.

Content Note: Ableism, Restraint, Abuse, Neglect, PWD Death

Small, lit, white candle held in someone’s cupped hands lights the darkness. Keyword: Anthony Corona

Image Description: Small, lit, white candle held in someone’s cupped hands lights the darkness.

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The school I attended didn’t believe in the NVCI certification; its philosophy was that workers should absorb any violence directed at them by the people they supported.

I argued with my teachers about this; I didn’t think it was fair to potentially many people, depending on the circumstance. I had a rock-solid belief, supported by the NCVI philosophy, that restraint should be a last-resort measure. But I also wanted to be sure that if I found myself in a situation where a person I was supporting was agitated and at risk of hurting self, others, or me, that I had the tools to effectively de-escalate the situation, and if a restraint (or hold, as NCVI calls it) was the tool that was necessary — well, that was regrettable, because the situation ideally should been escalated before it got to that point, but if the person was so out of control that a hold was necessary then the analysis of how we got there could wait, because the safety of everyone involved was at that point the primary consideration.

Safety.

Which is partly why I was so upset to hear that after being held in restraint on his bus ride home from school last December, 18-year-old autistic youth Anthony Corona died. I didn’t hear about this when it first happened, but it’s come up again recently because the coroner found he died from positional asphyxia — he’d had his head held between his knees for twelve minutes, blocking his airway and circulation, and he died soon after the people restraining him had discovered he’d stopped breathing.

There is no excuse for this.

Corona, who was also intellectually disabled, seemed from accounts to be out of control when he was restrained — he’d thrown a half-full bottle of water at an aide and physically attacked another student. At 5’10” and 190 lbs., he was a large young man, but could have been restrained easily using a two-person NVCI hold, removed from the bus without breaking the hold, and held and periodically repositioned by employees (who could have spelled off by other employees, if necessary) outside the bus until more assistance arrived. He, the employees doing the hold, and anyone else in the area would have been safe, provided that the hold was being done properly by trained individuals.

CPI does not sanction (nor does any other system of behaviour management of which I’ve ever heard) forcing an individual’s head between their knees and holding it there for even ten seconds, let alone twelve minutes. This restraint caused his death by positional asphyxia — and the determination that autism and was a contributing factor needs to be struck from the coroner’s report. Autism is not a lethal condition, and the suggestion that behaviours exhibited by Anthony Corona (ones that the coroner has apparently linked to his autism diagnosis) contributed to his death is ableist victim-blaming.

Shame on the coroner.

I wish that I could see the police report, because several things have struck me as I’ve read media accounts of Anthony Corona’s death and events leading up to it on which I’d like clarification.

Restraint on the Bus

Anthony Corona was “harnessed” into his seat (this account also mentions that he was harnessed) for the two-hour bus trip to and back from Bright Futures Academy each day. Also, school president Becca Colucci said that students are seated on the bus based on their behaviours. Another Bright Futures Academy student on the bus told a reporter from the Press-Enterprise that staff often didn’t secure Anthony in the harness and that he knew how to slip out of it. Becca Colucci corroborated this.

Restraint should always be the last resort. Was a harness and chain (whatever role it played) truly the least restrictive option for bus transport for Anthony, given that it restricted his movement for a total of four hours a day? Was it fair not to give him the choice of with whom he wanted to sit (or at least near?) This institutional approach to transportation practically guarantees behaviour issues in people prone to them, especially given that, as the student mentioned earlier also told the Press-Enterprise reporter, staff generally could be “quite rough” with Anthony and seemed reluctant to deal with him. This points to staff-related issues around Anthony that needed to be addressed, for everyone’s safety, before we even get into what happened on the bus, particularly around putting a safety plan in place for both school and bus.

Anthony Corona’s Safety Plan

Even though Anthony was secured in his seat, if he had a propensity toward behaviour that could put himself and/or other people risk, a safety plan for that contingency should have existed so that in an acting-out episode, all staff know details like what holds are and aren’t authorized, when the bus should be stopped, what the other students should do and who should initiate that, who at the school should be called, etc. — in short, making sure everyone knows their role, has the information they need to perform that role effectively, knows from whom they’re supposed to take instruction, and what the chain of communication is. If they can’t get on board with the safety plan, they need to work somewhere else, because these plans exist for a reason: to keep *everyone* safe until the person is under control again.

Apparently a safety plan did exist. We’ll come back to that.

T here were 21 students on the bus the day that Anthony Corona died, with only 2 aides and a driver (even though there can be up to 6 aides on a bus.) Even if Anthony Corona was the only one on the bus whose behaviour the school considered a particular risk (and given that Bright Futures Academy serves “special education students referred by local school districts due to significant behavior challenges”, that’s probably not the case) two aides in this setting isn’t enough. Things must have seem stretched enough that a student felt compelled to intervene when Corona became agitated, which is absolutely inappropriate, and why there should have been enough aides on the bus to both safely de-escalate acting-out behaviour and clear the area to the greatest extent possible. If someone has become violent, other people need to be kept safe as well.

Now, the bus driver pulled over once he realized what was going on, and tried to help. However, it’s difficult to tell from media accounts what he was authorized to do. This article states that “Bright Futures staff were properly trained” before Anthony Corona’s death and subsequent restraint retraining for staff, so we’d expect that the bus driver could help out safely and effectively in this situation. However, the driver told the police that he was “unaware that Corona had a plan to control his behaviour”   Also, when the driver pushed Corona’s head between his knees, he was “trying something that his supervisor said had calmed Corona a few weeks ago”. The supervisor hadn’t reported the incident to the school.

In other words, he tried a new technique that presumably hadn’t been approved for use, with no idea of how it might interfere with what the aides were doing or how it might affect Anthony Corona (and, as a result, the people around him.) The aides let this happen despite knowing (presumably) that the technique wasn’t part of the safety plan.

For twelve minutes. This wasn’t a mistake that happened because someone made the wrong decision in a moment of panic. There was plenty of time to deliberate on whether they were doing the right thing, and they continued to use a technique that they must have known wasn’t approved.

Training

As history professor and disability activist David Perry pointed out, it wasn’t so long ago that Ethan Saylor and Eric Garner died for the same reason that Anthony Corona did —positional asphyxia. No trained person should have forgotten so soon that some restraint positions can be lethal.

When you get right down it, no trained person should figure that it’s safe to keep someone’s head pushed between their knees for twelve minutes. Shame on them and the people who “trained” them.

Shame On All of Them

The institutional practices, lack of coordination, and the assumptions both underlying and arising from both aren’t things that can just be apologized away, nor totally solved by the seat belt clips that the school bought to transport students more securely. Shame on Becca Colucci, for thinking that Bright Futures Academy’s “deepest sympathy” to the family and retraining in restraint for all bus staff are enough to address this. Apologies barely sufficed when an autistic student with epilepsy had a seizure and seriously burned his leg after allegedly being left unattended by Bright Futures Academy staff in 2015. When a vulnerable person that parents have in the care of your school dies at the hands of your staff (Colucci even told police that she didn’t believe that Anthony Corona was restrained correctly), retraining staff in restraint is only part of the answer — and the tip of the iceberg, really, because restraint should always be the last resort. Another part of it is the person in charge having the decency to resign.

And shame on the California Department of Education for not making Becca Colucci do it. Anthony Corona may have not have been someone that some aides at Bright Futures Academy wanted to deal with, but to his grandmother and aunts he was a family member.

Anthony Corona’s “crime” would have gotten a non-disabled student removed from the bus and bus privileges suspended for a period, or perhaps suspension from school depending on the severity of the fight with the other student; at the very worst, the police would have been called, but it’s unlikely that charges would have been made.

Corona, however, a young, intellectually disabled, autistic man, died.

Something to think about as we start Autism Awareness Month.

Rest in peace, Anthony Corona.

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Ann Coulter Uses the Word “Retard” Again

When I heard that Ann Coulter, in a throwback to the 2012 election cycle (albeit a bit earlier in this time) had used the word “retard” again, I wasn’t going to write about it at first. But obviously I’ve changed my mind.

Content Note: Ableist slurs, Ableism, Donald Trump, US Election 2016

Headshot of Ann Coulter at the 5th Annual TV Land Awards - woman of indeterminate age with long blonde hair and blue eyes, smiling into the camera. Keyword: Ann Coulter

Image Description: Headshot of Ann Coulter at the 5th Annual TV Land Awards – woman of indeterminate age with long blonde hair and blue eyes, smiling into the camera.

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In 2012, after a Presidential debate, Ann Coulter tweeted “I highly approve of Romney’s decision to be kind and gentle to the retard”, in reference to Barack Obama, and I said that I was “shocked.”

I’m not shocked this time around. I’ve heard her talk a lot in the last four years.

This time, she was defending Donald Trump’s mocking of disabled reporter Serge Kovaleski. In her new book, In Trump We Trusts, she writes (as reported by theslot.jezebel.com):

“Trump denied knowing that Serge was disabled, and demanded an apology, saying that anyone could see his imitation was of a flustered, frightened reporter, not a disabled person. It’s true that Trump was not mimicking any mannerisms that Serge has. He doesn’t jerk around or flail his arms. He’s not retarded. He sits calmly, but if you look at his wrists, you’ll see they are curved in. That’s not the imitation Trump was doing—he was doing a standard retard, waving his arms and sounding stupid: “’Ahhh, I don’t know what I said—ahhh, I don’t remember!’ He’s going, ‘Ahhh, I don’t remember, maybe that’s what I said!’”

Even if I chose to overlook her use of “retard” and “retarded”…it’s a terrible argument, and Ann Coulter knows it.

Call Her What You Want – Ann Coulter is a Smart Woman

Check out Coulter’s biography. She’s a corporate lawyer. She worked for the U.S. Senate Judiciary Committee, for God’s sake. She’s a best-selling author and columnist and a respected Conservative pundit, and you don’t get to her level in the right-wing media when you’re a woman unless you’ve got some major brains in your head.

Granted, Coulter was fired from MSNBC (twice) because she’s so controversial. Personally, I think most of her expressed opinions are disgusting. But I’d bet money that a lot of her bluster is just that – bluster. She’s worked hard to get to the top and she knows that the more she can shock people, the longer she’ll stay there. The people that are buying In Trump We Trust aren’t going to be bothered that she used the word “retard”. She’s hoping that you’ll be bothered enough that you’ll buy the book to see what else she’s said, or that you’ll at least talk about this one page in her book long enough to keep her in the news a little longer so that her fans who haven’t heard about her book will buy it.

And yes, I do realize that I’m contributing to this by writing this blog post. But:

  1. I’m not going to get into the number of people that access this blog in a day, but this post isn’t going to be what keeps Ann Coulter in the news.
  2. The people who consistently access this blog aren’t likely to go out and purchase Ann Coulter’s book even out of morbid curiosity.

Bottom Line

Ann Coulter is a shock jock, and she plays that game really well.

Each time she says “retard”, she knows what the response will be, and she’ll only use it as “evidence” to support her Trump-ish narrative that America is too politically correct and that people can’t speak their minds for fear of the “thought police” coming after them. I’ve been hearing this narrative for years, and it irks me. I’m not in favour of “silencing” anyone – people should feel free to say what they want. But word choice has consequences, so people should ask themselves, “Am I willing to live with the consequences?” before tossing around words like “retard” like they don’t have any historical context and emotional weight behind them.

Apparently Anne Coulter feels so strongly about using shock value as a way to stay in the spotlight that she’s willing to live with the personal consequences of using ableist language (not to mention racist, classist and sexist language) in her speech and writing. And that’s her problem. Not yours. The best thing you can do is continue to let her know that there are consequences to using language that’s hurtful to other people.

Ann Coulter – Here’s What You Can Do

You’re not going to change Ann Coulter. But here are some things you *can* do:

  • Refuse to even read her books (let alone buy them) and tell people why.
  • When people bring up her theory that Donald Trump wasn’t mocking Serge Kovaleski, tell them that it’s a load of crap and explain why (it’s not that difficult; just go over the paragraph I cited.) Be sure to include that she should know herself that it’s a load of crap, since she’s a corporate lawyer and can presumably spot a poorly-constructed argument.
  • Continue to explain to people why “retard” is hurtful and why people get upset when celebrities use it. Mention that she’s a frequent and unapologetic offender.

But at the same time, don’t let her hateful rhetoric rent space in your head.

You’ve got much more important things to think about than the ramblings of a woman who feels irrelevancy nipping at her heels.

 

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Thoughts on “How Do You See Me?”

On Tuesday I dropped into Twitter to see what people were seeing about Primary Tuesday, and got distracted immediately by a discussion that noted disability writer and advocate David M. Perry was involved in. I jumped right in uninvited, because apparently that’s the kind of Twitter user I’ve become. I felt quite strongly about the topic once I investigated, though, which was this year’s Down Syndrome Awareness Day (March 21) video from Italian Down Syndrome advocacy group CoorDown.

Content Note: Ableism, Assumptions, Erasure, Media Depictions of Disability

 

Cartoon representations of DNA strands, in light blue. In two strands, several chromosomes are replaced by the words "Down Syndrome". Keyword: How Do You See Me

Image Description: Cartoon representations of DNA strands, in light blue. In two strands, several chromosomes are replaced by the words “Down Syndrome”.

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The video in question is entitled “How Do You See Me?”, starring AnnaRose Rubright, a 19-year-old woman with Down Syndrome, and actress Olivia Wilde:

 

 

I understand what CoorDown was trying to do with “How Do You See Me?” They were using the Olivia Wilde character, “normal”-looking and someone that anyone would expect to make those statements to get people interested, and then there’s the “gotcha”: the narrator isn’t the Olivia Wilde character, like you assumed, but a person with Down Syndrome. How does that change things for you, CoorDown, asks? How do you see AnnaRose? What assumptions do you have about her do you need to challenge?

CoorDown’s intent with “How Do You See Me?” wasn’t bad. But the messaging  is bad. The optics are bad. David Perry was trying to tell a CoorDown representative this yesterday, but the person wasn’t very receptive.

Here are some things about the video that were problematic for me

Disabled People Shouldn’t Be Required to Identify as Non-Disabled

There’s an implication in “How Do You See Me?” that in order for people with Down Syndrome (and, by extension, disabled people in general) to “see” or perceive themselves as people with valued social roles, and a well-rounded personality, and dreams, and a life in the community that brings them fulfilment, they also have to self-perceive as a white, non-disabled person. Not only should it not be necessary in this day and age for disabled people to self-perceive as non-disabled in order to live like a non-person person (period…forget about skin colour), it explains why this video is drawing criticism from disability advocates everywhere.

In “How Do You See Me?” AnnaRose Looks and Sounds Like She’s Waiting to Start Her Own Life

This isn’t the case, by the way. AnnaRose goes to college, works at a physiotherapy clinic, and is a Special Olympics athlete.

Yet, in “How Do You See Me?”, we hear her voice talking about “seeing” herself being and doing a lot of things while we watch Olivia Wilde do them.

As Kim Sauder says on her blog, “Crippled Scholar”:

“The video would have been far more poignant and entirely less infuriating if it had shown the narrator engaging in the activities she described rather than Olivia Wilde.”

Mixed Messages in “How Do You See Me?”

The video posits, presumably unintentionally that it’s better to have Olivia Wilde’s face than it is to have AnnaRose’s face, with the distinguishing features found in most people with Down Syndrome. For a video created for Down’s Syndrome Awareness Day, by a Down Syndrome advocacy group, that sends a rather mixed message to me.  Piggybacking a bit on my last point, it would have been nice to see more of AnnaRose in the video, not so much of “Olivia Wilde plays a girl with Down Syndrome” and “Olivia Wilde has Down Syndrome…”, which seem to be the ways the preview for the video appears on Twitter when it’s shared – without AnnaRose’s name.

Bottom Line

Again, it’s not that I think that CoorDown intended to film something that was problematic.   But there’s an implication “How Do You See Me?” that disabled people should see themselves as non-disabled simply because of an ableist assumption that non-disabled is better. And I can’t get behind that, especially from a video that’s supposed to raise awareness about Down Syndrome.

 

 

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Ellen Degeneres and “Idiotest”

So I was cleaning yesterday and had my television set to “Ellen”.

I don’t watch “Ellen” very often. It’s not that I don’t like Ellen Degeneres. I actually find her quite funny. There’s just usually something on that I want to watch more when her show’s airing in my area and I happen to be watching TV, and I don’t have a DVR.

Content Note: Ableist slurs

White man in a gray suit with a white shirt and blue bow tie grins widely. He's holding holding a large white sign that says "IDIOT" in red letters. Keyword: Idiotest

Image Description: White man in a gray suit with a white shirt and blue bow tie grins widely. He’s holding holding a large white sign that says “IDIOT” in red letters.

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But yesterday I was distracted by cleaning and the show that was on at 3pm switched over to “Ellen” and I didn’t bother to change it, so there you go. But the show, a repeat from April, got my attention very quickly when Ellen started talking about how they were going to play their own version of “Idiotest” (a game show of which I’d never heard, on the Game Show Network) with the audience.

“Idiotest”…Idiot…

I don’t like the word “idiot”. It’s got an ableist history as sordid as “retard”. I try not to use it since I learned about how ableist it is, but when I do let it slip, you can bet that I’m very angry. Eliminating it from my vocabulary was difficult, because it’s very much a part of society’s vernacular, and I’d grown up using it (unlike “retard”, which was never allowed in my house). And most people don’t know that it’s ableist, so I cut them some slack when I hear it.

However, the fact that there’s a game called “Idiotest” (on prime-time and on “Ellen”) makes me feel a uncomfortable, particularly when Ellen said in her video that she was playing the game with the audience to “assure the world that there are no idiots in my audience”.  Obviously the research department hadn’t unearthed that “idiot” was originally a derogatory term for intellectually challenged people. People aren’t using it with that intent now, obviously, but even if it wasn’t her intent to send the message that intellectually challenged people weren’t welcome in her audience (and I don’t think that was the message), there was a subtle, albeit joking, message that people with low intelligence aren’t.

Calling People Idiots Just Isn’t Funny

The problem is that the joke isn’t really funny, and it becomes less funny when you know the history of the word “idiot”. There’s currently enough in the definitions of “idiot” on the first page of Google that any good researcher should have thought, “Uh oh, better look at this before we create a game around it.”

Ellen’s idea of “Idiotest” involved bringing people (presumably pre-selected) up from the audience and asking them a brain-teaser. The people who got them wrong (4 of 5) got called idiots and were made to sit on the stage wearing dunce caps.  Here’s the video:

They each got a great trip as a prize, but that’s not really the point. The whole “Idiotest” business hearkens back to a particularly ugly time in the school system that really doesn’t need revisiting. Children were asked questions through which they perhaps legitimately couldn’t think because of undiagnosed cognitive difficulties and learning disorders, and when they couldn’t get the answers they were shamed in front of the whole class and made to sit in the corner wearing dunce caps.

Seeing someone try to make that experience into something fun and funny made me feel profoundly uncomfortable.

I expected a bit more sensitivity from Ellen Degeneres.

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Bishop Kevin Doran Knows that Down Syndrome isn’t “What God Intended”

Content Note: Ableism, Catholic Church


Cartoon representations of DNA strands, in light blue. In two strands, several chromosomes are replaced by the words "Down Syndrome". Keyword: Kevin Doran

I put this article up about Irish Catholic Bishop Kevin Doran on the Facebook page yesterday, and it’s getting a lot of attention – enough that I thought it deserved some more.

Kevin Doran is getting attention from the disability community because of remarks he made during an interview about Ireland’s upcoming referendum on gay marriage. There’s an interview with Kevin Doran, rather hard-hitting, at the bottom of the article, which is quite interesting if you get the time, because it really shows how muddled and not-completely-formed the theology of at least Kevin Doran’s school of Catholicism is on this issue.

(Full disclosure: I don’t pretend to know what Kevin Doran’s particular school is, as I don’t know a whole about the Catholic Church, but I do know my Bible and I do have at least a working knowledge of and grudging respect for theology.)

I’ve heard his sorts of arguments before, and they made me sigh. But let’s get to what really brings me here today.

Kevin Doran’s Thoughts on Disability

I don’t think that Kevin Doran saw himself as being offensive when he said, in response to the question of whether homosexuality was something God intended, that “That would be to suggest that if some people who are born with Down Syndrome or Spina Bifida, that that was what God intended either.”

But it was very offensive nonetheless. And extremely problematic, because Bishops have authority within the Catholic Church. People believe that what they say is right. If the Bishop says that people with Down Syndrome or Spina Bifida weren’t what God intended, there are going to be people are that take that seriously, and that attitude is going to inform their actions.

Disabled people aren’t fighting enough harmful rhetoric as it is (and in the UK in particular, where the government-generated and media-driven “scrounger” continues to fuel catastrophic cuts to benefits and services?)

I know a number of intellectually disabled people who attend church every Sunday, who take great comfort from it, and great pleasure from being part of a church community. They are welcomed as any non-disabled member would be. That a Bishop not only believes in his heart that disability and the diversity and opportunities for learning (for everyone) that come along with it are not what God intended, but would publicly state it and use it as justification to deprive another group of rights that others enjoy is despicable to me.

But then again, Kevin Doran did seem to be out to out to offend just about everyone that he could with this interview, including gay and lesbian parents, and women who have been raped that are considering abortion. Perhaps he thought he should fit disabled people in there somehow as well.

Won’t you join me as I roll my eyes?

When “Christmas” Doesn’t Mean “Family”

White teddy bear in a Santa hat sits with a white-wrapped Christmas present in front of him, with a red ribbon and a big red bow. Snow falls in the background. Keyword: Family

Image Description: White teddy bear in a Santa hat sits with a white-wrapped Christmas present in front of him, with a red ribbon and a big red bow. Snow falls in the background.

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In the grocery store yesterday, sharing Christmas greetings with an acquaintance, she said that she thought the most important part of the holiday season was spending time with family…didn’t I agree?

I nodded, because it seemed expected of me, but the question irked me. I’m not sure why I’ve felt especially this year, knowing that I will be surrounded by my own family for Christmas, a keen awareness that there are plenty of people in society who won’t. The assumption seems to be that everyone has a family to go home to for Christmas, or that people with family will be looking forward to that Christmas visit home, when that’s not always the case.

When Your Family Has Forgotten You – Or Doesn’t Even Know You

When intellectually disabled people in Ontario started to be moved out of institutions in the 1970s and 1980s, many of them didn’t have any family that they knew about. Doctors had advised families to institutionalize these intellectually disabled men and women as young children and to forget about them. So, as adults that had been raised in institutions, these men and women found themselves without any family that they knew of (although some of them may have certainly had families, perhaps even family members that had never even been told about them) and in towns where support agencies had spots for them, with no connections at all otherwise.

I volunteered at agencies where staff used to invite the people they supported into their homes for holidays, to give them a place to go. It seemed natural to me, as staff were already providing most of the functions that a family would for these people anyway. But when I went away for school to train to work with intellectually disabled people, I was told that this was wrong, and that staff shouldn’t be acting as friends. If people were going to go away for Christmas, my instructors said, they should be making friends in the community and visiting their homes – they should have non-staff friends.

I understand now what my instructors were trying to say, but at the time I was angry. “Show me the families that will do this,” I said, Sometimes I still say this, when I hear people suggest that the government shouldn’t be caring for disabled people, but that volunteers and churches should be doing it – “Show me the families”.

“Show me the families that will do this,” I said to my professors, “and tell me what’s wrong with an agency person opening their home, on their own, unpaid time, to a person that they support, for the holidays,”

This was one of the first of many things on which both faculty and I refused to budge, but the trend has gone in favour of faculty’s position that day – and I do understand why. A natural support is always better than a paid one.

But it does leave people alone on Christmas Day.

(If you’re at all familiar with the abuse that people suffered in Ontario institutions like Huronia Regional Centre, I think that you’d suspect as I do that Christmas alone is infinitely preferable to never leaving an institution at all. But that’s an assumption on my part. I’ve never asked anyone about this.)

And it’s not really the point, anyway.

Christmas Isn’t Just for People with Family

My family used to have Ivy over at Christmas (we don’t now, for a variety of reasons), but Ivy is my very special friend and we didn’t think anything of it. I believe that we were an exception. There’s still a perception out there among people that don’t have experience with intellectually disabled people that friendships with them are too difficult and too much responsibility, let alone invites home for holidays. This is slowly changing, as society in general starts to have more access to intellectually disabled students through integrated programs in school and in adulthood in workplaces and churches and community activities. After all, Ontario doesn’t institutionalize intellectually disabled people anymore.

But in many ways they still walk on the edges of communities. They aren’t fully integrated. Friendships with the “normals” don’t come as easily.

Like any other demographic in society, some without families are fine with spending Christmas alone. But some aren’t. And, of course, this isn’t the only group in society with some members that may not have family with which they can spend Christmas, or who just can’t, as much as they’d like to, spend Christmas with family. Essential services have to stay running, and people have to work in order to do that. Some people simply live too far away from family to get home every year. Some people have lost family members, or whole families, and are doing everything they can to hang on at Christmas.

If you’re spending Christmas with family, I hope that you enjoy it, and I sincerely wish you and all your loved ones all the best in the coming new year. And if you’re alone, whether it’s by circumstance or choice, merry Christmas and all the best of the new year to you as well…the joy of this season isn’t just for those who are surrounded by family, and I hope it finds you well.

Intellectually Disabled Adults and “Age-Appropriate” Interests

Well, I’m back 🙂 I finished my 50 000 words for National Novel Writing Month with a day to spare, took a couple of days off, and am ready to get back to my regular writing routine. And to start it off…yesterday I got an interesting email from a colleague with some thoughts on the about the perception within the support community that it’s important to encourage intellectually disabled adults to engage in “age-appropriate” activities. It got me thinking.

Content Note:  Ableism, infantilization, double standardsArt supplies arranged to make a square - paints in tubes make up top of the square, with pencil crayons in a box underneath to complete the right side and half the lower lower side, and markers and crayons to make up rectangle to complete the square. Keyword: intellectually disabled adultsImage Description: Art supplies arranged to make a square – paints in tubes make up top of the square, with pencil crayons in a box underneath to complete the right side and half the lower lower side, and markers and crayons to make up rectangle to complete the square.

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I’ve been lucky enough to see agencies wrestle with this idea, and come out on the side that if intellectually disabled adults find joy in an activity that isn’t “age-appropriate”, there’s nothing wrong with it, but apparently it’s still an issue for some people. I can see reasons why it’s a concern – intellectually disabled adults tend to be infantilized by society (and even by agencies) as it is, and why would staff want to encourage behaviour that feeds that dynamic?

But, as a society, we’re reasonably tolerant of non-disabled adults who choose to engage in “non-age-appropriate” activities. Comic Con conventions are full of adults who love to play dress-up (and their costumes are awesome, by the way). Plenty of adults collected Beanie Babies when they were the rage. I love to play with Lego, and doesn’t everyone have a favourite Disney cartoon?

And, as my colleague suggested, when non-disabled adults draw we call them artists; when intellectually disabled adults colour, we label their interest in art “non-age-appropriate” and take the crayons away.

Intellectually Disabled Adults are…Adults

I have a friend who collects knives. I don’t get the appeal. But I’m not interested in telling people what their interests should be (unless pursuing those interests is harming others), whether it’s a very “grown up” interest like collecting the labels off of wine bottles or whether it’s making window decals using a kit (which I used to do). I’d like to think that most adults feel the same way about other adults with whom they associate. But even though I think there’s increasing awareness that (gasp!) intellectually disabled adults are adults too and should have the right to choose their own interests, regardless of how “age-appropriate” they are. there are still some problematic attitudes about the whole business.

It’s a double standard. Especially so in light of the fact that while we insist that intellectually disabled people have “grown up” interests, we all too often don’t acknowledge that they’re grown-ups in other life spheres:

  • We don’t provide comprehensive relationship training and sexual safety education
  • There’s still not nearly enough education about self-advocacy skills and talk about why they’re important
  • People still don’t have much control when it comes to their services and who provides them.

These things aren’t constants across all agencies, of course. Some agencies are doing a fine job with relationship training and sexual education, and are making great strides with self-advocacy. And Ontario’s transformation of services over the last few years has been all about giving people more control over services.

However, it’s important that we as support people get our collective heads on straight on whether we want be a culture that supports all the adult rights of intellectually disabled adults, whether we’re going to continue on this path where we look at them as children (which is not only unfair to the people we support, but sends a message to society that it’s okay to do so as well), or whether we’re going to go between both points of view, picking and choosing when we view intellectually disabled people as “adults” according to when it’s comfortable to do so.

The last option isn’t acceptable, in my opinion. We have to go one way or the other.

And don’t we all know which way is the right way to go?

 

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Thoughts on Inclusion and Intellectually Disabled People

Shiny green push button with shiny grey border, "inclusion" in uppercase black letters across button. Keyword: intellectually disabled people

Image Description: Shiny green push button with shiny grey border, “inclusion” in uppercase black letters across button.

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Recently, in an internet  discussion group to which I belong, we were debating all things inclusion for intellectually disabled people.

Inclusion vs. Segregation for Intellectually Disabled People

It was an interesting experience for me, because I’ve never really heard people defend the argue the idea that moving toward community-based housing and employment and out of institutions, group homes and sheltered workshops potentially violates the ideals of person-centred planning, and that institutional residential and employment arrangements aren’t segregated…that they are, in fact, a better option for intellectually disabled people than more community-based alternatives.

I was one of the ones arguing in favour of more inclusive practices when supporting intellectually disabled people, which probably doesn’t shock anyone. Out of the three of us “inclusion types” that were talking the most, though, I was definitely the moderate one. Maybe it’s because I’ve worked with a lot of parents and seen how scared they are for their intellectually disabled childrens’ safety once they leave the home, that the constant supervision of a group home or even a more institution-like setting (Ontario doesn’t have institutions anymore, but I understand that other areas still do) becomes attractive. I can see the other side, while still firmly coming down on the idea that it’s more desirable that all disabled people , including intellectually disabled people, be as much a part as the community as possible, and that institutions, group homes, and sheltered workshops tend to work against that.

The Argument Against Community-Based Placements for Intellectually Disabled People

But, said the people arguing the other side, what if people are more comfortable in those environments and they don’t want to leave? You are taking away their choice. You are telling them, “Inclusion is the right way, and you’d better get on board, even if it means leaving your home/workplace and your friends and all the things that make you feel comfortable.” It wasn’t about segregation, they argued. It was about really listening to intellectually disabled people and what they wanted out of life.

And wow, did it ever take off from there.

We got into questions of whether people can actually make an informed choice if they haven’t experienced the alternatives, whether social systems stream intellectually disabled people into segregated settings and when that starts if people do believe that it happens (I do believe it happens, practically from the time that a child is officially identified in school as having an intellectual disability), whether disabled people having other disabled friends is “inclusive”, and medical intervention versus “warehousing” when a person does have to spend time in an institution. We talked about caregiver rights. It got heated, sometimes a little nasty. People were very passionate about their positions.

The other, less moderate gentleman and I tried to explain our positions on all this several times, but I didn’t feel like I was being understood…I’d venture a guess that the people on the other side of the debate were feeling the same way, from the tone of the discussion, but it seemed to me that we were all ultimately working toward the same goals. I was puzzled as to where we were going sideways.

What I Do Know – How I Support Intellectually Disabled People in My Work

I’m not interested in fixing a situation that isn’t broken to begin with, including moving someone out of an institution, group home, or sheltered workshop if they haven’t indicated that they’d like to move and they’d like my help to do so.  There are some situations where, unfortunately, people have to move out of places because of issues related to safety and violations of rights, like when people were moved into community settings when institutions started to close in Ontario, or when medical issues arise that require specialized interventions that can only be delivered in a hospital or, say, inpatient mental health services setting, or when families are in crisis to the point where they can’t care for an intellectually disabled family member anymore and that individual must by necessity take the first placement that opens and wait there for a more suitable one.  These are tough situations, involving the health and well-being of the individual, and sometimes that has to take priority over whether a placement is community-based.

However, how can a person truly answer, “Do you want to continue living in a group home or live (or work toward living) in your own place?” or “Do you want to stay at the workshop or try to get a job somewhere else?” if they’ve never experienced anything but living in a group home or working in a sheltered workshop (or at least never had it explained to them that there are different ways that people live and work than what they’ve experienced and that they have to right, as citizens, to try these things if they want?) Maybe it doesn’t happen tomorrow, because maybe there are skills that need development and supports that need to be put in place…maybe it takes a long time to work up to being ready to live independently…and maybe it even doesn’t work the first time out because it’s too overwhelming…

But intellectually disabled people should have the right to take risks, and it’s not the worst thing in the world for them to experience disappointment. And you never know – what you think is going to turn out terribly (and I’ve been there in my work, when an intellectually disabled person that I support has announced intentions to do something and I’ve just wilted inside, thinking, “Wow, there’s no way this is going to work”) may actually turn out wonderfully for all involved. I’ve seen this happen too.

One interesting thing I noticed about this discussion was that sometimes it felt like each side was criticizing the other for the same thing:

  • There are too many rules and the individual doesn’t get to make them
  • People fall through the cracks and that leads to bad service and potential abuse

I took two classes on person-centred planning for my Developmental Services Worker Diploma, and have been exposed to it as a philosophy of support for as long as I’ve been in this field (over half my life). I’ve never taken it to mean that it’s about making choices for people, or even influencing them a certain way. Yes, it’s unfortunate that intellectually disabled people (all disabled people) are at the mercy of whatever current trends are shaping the services that they use, and if that means that means that a person has to leave a group home or sheltered workshop (or move into a group home or institution setting if you’re living in England, or even in Canada – loss of control is a theme for disabled people the world over, it just manifests in different ways sometimes), but when I worked with youth I told them:

“We’ll talk about what your options are, we’ll make a plan, and then we’ll talk to the people who can put the plan in place. If you ever want to change the plan, just say so, and we will. This is your life.”

Part of the process was, “If you don’t like doing something that we’ve set up, tell me, and it doesn’t go any further. It stops there.”

The individual always set the course. Why wouldn’t they? It was their life, not mine.

When families are involved, that kind of process is difficult.  It takes a bit of negotiation sometimes, particularly if the person was under 18 and not considered an adult. In the group discussion, I didn’t get into how my first responsibility was to the individual, not the family (with some exceptions dictated by legalities around age). It didn’t seem like a discussion that would be welcome among parents in the group.

I don’t use a specific person-centred planning tool, but I use the methodology, and didn’t understand the objections to it in the discussion.

And if you want to argue that people don’t fall through the cracks and that abuse doesn’t happen in residential settings, then I’ve got a long list of articles that you need to read.

I left the conversation when it was obvious that it was getting personal and not going much further, but not before I posted this:

I don’t know whether it was this thread or another that I wrote about Special Olympics, but I’ll say again that my experience of it is that intellectually disabled people get told, “This is a great chance for you to play sports” when some of them could definitely play sports on a level that would allow them to comfortably compete on a community league…certainly much better than I ever did before I acquired disabilities. I understand the reasons why people like SO, and it’s certainly a valuable program, and even if people can play in community leagues and would rather stick with SO for their own reasons…go for it. But people have the right to know all their options, if they’re interested in playing sports…that they have the right, as all community members do, to try community league play if they want, instead of having people assume that because they’re disabled, they “belong” in SO and that it’s the option they’d choose, so no others need to be talked about… but as far as whether people choose to associate with other disabled people, or non-disabled people, or a mixture of both, or hang out by themselves…not my call to judge their choices or to presume to tell them their choices are wrong. I just let them know what their options are and, if they want/need the help, assist them to set it all up (assuming I ever get work in this field again). Does that make sense?”

 

I think that there will always be some intellectually disabled people who require a level of care that’s more institutional in nature than inclusion advocates like me would like, because of specialized needs. I also think that there are ways of increasing agency and self-determination within these settings for providers who are really committed to doing so, and that the population who really requires this level of care is smaller than we assume. The thing that really bothered me about the arguments against community based-supports was that they seemed to minimize the fact that intellectually disabled people have rights – not rights that can be ignored or tweaked because of the individual’s disabilities to fit others’ needs, but rights that they have by virtue of being adults in our society.

We need to get back to presuming competence and finding ways to allowing intellectually disabled people to make truly informed life choices, not letting ourselves be afraid of individuals potentially making bad decisions.  We need to be okay with the lives of people we support getting a little (or even a lot) messy as they learn about being a community member and the rights and responsibilities that come along with that.

Ultimately Agreeing, But Still So Different

The thing that we all agreed on this discussion? That disabled people in general and intellectually disabled people in particular should drive the discussion in which services develop and change, and that they should have as much input as possible into that change process. I feel like we all had a lot more in common than anyone would guess at first guess. Just drastically different ideas of what that should look like, which was perhaps the most frustrating thing of all about the whole discussion.

Thoughts?