SunRise B&B Refuses Service to Visually Impaired Man Because of his Service Dog

My dad let me know about a story I missed last week, about a Toronto couple being turned away from a bed and breakfast in Prince Edward County, Ontario because of the service dog traveling with them. The owners of the Sunrise B&B in Bloomfield, Ontario are, according to CBC.ca, “upset about what happened,” but stand by their decision to insist that Jill Greenwood, her husband David (who is visually impaired), and his guide dog Romy, find alternate accommodation.

I have thoughts.

Content Note: Ableism, human rights violation, expectation of accommodation

Golden labrador guide dog lies on the grass, alert with head up. Dog's black harness is visible. Just off to the side, we see the ower's legs in blue jeans, and their white cane. Keyword: SunRise B&B

Image Description: Golden labrador guide dog lies on the grass, alert with head up. Dog’s black harness is visible. Just off to the side, we see the ower’s legs in blue jeans, and their white cane.

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Legally Speaking

John and Joan Stenning, the proprietors of the Sunrise B&B, say that the Greenwoods didn’t tell them them that they’d be coming with a service dog. They say that had they been told, they would have informed the Greenwoods that their “no pets” policy includes service animals.

That set off alarm bells in my head (as I’m sure it does for many readers) because most businesses know better than to try and bar a service animal.  However, in Ontario, a number of factors have collided to make the bed and breakfast industry a strange little pocket of the hospitality industry where lawyers can apparently argue that the Stennings didn’t break the law by denying service on the basis of a service animal:

However, the Accessibility Directorate of Ontario did confirm that denying service to some because of their service animal violates the Ontario Bill of Rights, so I can’t see how how the Stennings or their lawyer can argue that they’re in the right.

Let’s unpack this a little more.

Public vs Private Space

I don’t know what the law has to say the status of your house as private space once you decide to rent rooms in it. But it seems to me that once you decide to open a business that lets the public into your life like that, you give up some of the right that you have to pull the “private space” card. I presume that no one held the Stennings at  gunpoint and demanded that they open a B&B. Anyone going into that business has to know that while they definitely have the right to set boundaries (within reason) about what guests can do, they also can no longer do exactly as they want in their home, all the time.

They may have to change behaviour to reflect that other people are in the house (keeping music and TV volume low, shorter showers, ensuring public gathering areas are always tidy.)

They may have to meet safety standards that they didn’t before.

Human rights standards need to be met. The Greenwoods aren’t interested in taking this to court, but maybe the next people with service dogs will be. The Stennings were just a step from violating the law under the AODA, and, if I understand the pending legislation correctly, would be in the wrong were it currently law:

(2)  No person, directly or indirectly, alone or with another, by himself, herself or itself or by the interposition of another, shall,

  (a)  deny to any person occupancy of any self-contained dwelling unit; or

  (b)  discriminate against any person with respect to any term or condition of occupancy of any self-contained dwelling unit,

for the reason that he or she is a person with a disability who is keeping or is customarily accompanied by a service dog, or who requires the accompaniment of a support person or the use of an assistive device to assist them with their service dog.

(Lawyers can feel free to tell me how I’m wrong, because the Stennings’ lawyer thinks I am…and Lord knows I’m no lawyer…)

And let’s not forget, they apparently violated the Ontario Human Rights Code.

If you don’t want to keep your home space private and not have business law affect it, don’t choose to run a business in your home.

And even if they weren’t in the wrong, or their behaviour had little chance in the near future of putting them in the wrong if repeated…what has refusing the Greenwoods service at the SunRise B&B got them? A bunch of negative publicity all over the internet – at least four different news articles, not including my blog post, plus the bad reviews on Facebook and the B&B listing sites.

I wonder if it was worth it.

Best for the Stennings and all other B&B owners who’d prefer to discriminate against those that use service animals to start thinking about how they’re going to deal with this issue, because mark my words…it won’t quietly go away.

Business Needs to be Business at the SunRise B&B

And if the Stennings and other B&B proprietors don’t like that idea…well, it’s really too bad.

People who rely on service animals aren’t doing so to be difficult. They have the animals because they’re disabled and the service animal helps them to function in society. Guide dogs in particular (like Romy) are expensive, highly trained, and they have papers to show they’ve been trained.

Denying someone service because of their guide dog is as bad as denying service (in an accessible building) to someone who uses a wheelchair, over concerns about the dirt that the chair will track in or that other guests will be disturbed by the sound of the elevator or find the electronic doors to be too slow to open and close, etc.

I admit that I don’t know what it takes to clean up a B&B thoroughly after a service animal has stayed there for a night or two.  But obviously other B&Bs manage it , because there are plenty of them in the US, and its Americans with Disabilities Act *does* require many B&Bs (there are exceptions, based on number of rooms to rent and whether the proprietor lives on premises) to accommodate people with service animals.    If a proprietor can’t manage whatever cleaning needs to be done, or can’t afford to hire help or someone to do it for them, then instead of painting disabled people and their service animals as a burden they shouldn’t be expected to shoulder, perhaps they shouldn’t be in the B&B business.

No other business owners in Ontario gets to pick and choose which pieces of accessibility legislation they feel like following – they have to accommodate disabled people. If added cost is involved, it’s a cost of doing business in Ontario.

Expectation of Accommodation

David Greenwood says he can’t remember whether he told the Stennings that he’d be traveling with Romy. Over and over again in the comments sections on media accounts of this story, I saw people saying that he should have made sure the the Stennings knew, in part because the “No Pet” policy for the SunRise B&B was posted on their website. To them I say:

And, as Kim Sauder said over at her blog, “Crippled Scholar”:

“It’s bad enough that systems aren’t in place to accommodate disabled people without advance warning (thus giving people an excuse to fall back on when a space isn’t accessible) but to suggest that we should have to announce our presence in situations we weren’t even expecting to require accommodations is absurd.”

Perhaps (and I realize I’m only speculating) that’s why David Greenwood can’t remember whether he mentioned he had a service animal when he made a reservation at the Sunrise B&B: it’s relatively difficult in 2017 to find a business that won’t accommodate a guide dog like Romy, that provides support because of a documented disability and has all the papers to prove it.

Perhaps he wasn’t thinking that much about it because he assumed that the Stennings, like most business owners in Ontario, know that you can’t deny service based on use of a service animal, and didn’t expect to have to identify himself in advance as disabled in order to receive accommodation.  After all, it’s also just a bad business decision to get embroiled in this sort of thing. When business owners try to bar people on the basis of needing a service animal – surprise! – it often makes the news.

As blatant ableism sometimes does.

Bottom Line

This was an unfortunate situation all around. Here are the takeaways as I see them:

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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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Conflicting Advocate Hats: Alex Spourdalakis

Content Note: Ableism, murder of disabled child, suicide, abortion

Gray sad face with closed eyes. Keyword: Alex Spourdalakis

Image Description: Gray sad face with closed eyes.

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14-year-old Alex Spourdalakis was murdered by his mother Dorothy Spourdalakis and godmother Jolanta Skordzka.

And I say “murdered” deliberately, not to garner an emotional response, but because Alex’s mother and godmother did legally murder him. They gave him an overdose of sleeping pills with the intention of bringing about his death. When it became apparent that the pills weren’t going to kill him, they stabbed him repeatedly, and slit his wrists so deeply that they almost cut his hands off. They murdered him.

All this happened in 2013, but Alex Spourdalakis’ murder and the trial are back in the news again recently because Dorothy Spourdalakis and Jolanta Skordzka have been released from prison. They pleaded guilty to involuntary manslaughter and were sentenced to time served. After getting credit for the three years that they spent at the the Cook County prison, they are now free women. They spent significantly less time in prison than Robert Latimer served for murder of his disabled daughter, Tracey or that that Kelly Stapleton will for the attempted murder of her autistic daughter, Isobel, both of which were considerably less violent crimes.

Alex Spourdalakis and Two Important Conversations

As I did when I wrote about Kelly and Issy Stapleton, there are two important conversations to have when we talk about what happened to Alex Spourdalakis. One of them is what happened to drive a mother to such hopelessness that she felt there was such a lack of options for her child that his death was the most preferable. Overall, the media has painted Dorothy Spourdalakis as a woman who couldn’t get any support to deal with Alex’s specialized support needs, but the Chicago Tribune talks about how Mary Betz of Autism Illinois visited Dorothy Spourdalakis when Alex was hospitalized to find out what supports she needed, and was told that only a lawyer was necessary. The same article talks about how Dave Clarkin, a Department of Child and Family Services spokesman, said that family members refused “referrals to community-based services ranging from respite to psychological counseling.”

Why?

What is it about services that made the family reluctant to accept them?

The second discussion is about how even if there’s a total lack of services, it’s not an excuse to murder a child. And I acknowledge that the stress level for parents taking care of disabled children can get very high — it still doesn’t make killing a disabled child excusable. There’s a perception in our culture that if a disabled child is in pain, or if we figure that the child isn’t going have what we define as “quality of life”, or if care of the child or watching the child go through the challenges potentially involved with having a disability is going to take too great a toll on the parent(s), then the child’s murder not only becomes justifiable, but understandable.

If the child is disabled.

We’re disgusted by parents who kill their non-disabled children.

But when the child is disabled…different story. And there needs to be more discussion about that — there needs to be more discussion about how when you kill a disabled child, you are killing a child, period, and the deliberations of the justice system and the penalties for that action need to reflect that.

Read this blog for more about the murder of disabled children and two important discussions

Dorothy Spourdalakis and Jolanta Skordzka were originally charged with first degree murder, they should have been convicted with first-degree murder, and they should have received the appropriate sentence. Parents and relatives don’t get to decide which children get to have a future and which don’t.

I was speaking about this last week, and a friend said, “Careful…you’re starting to sound pro-life again.”

Alex Spourdalakis and Conflicting Advocate Hats

When Zika first emerged, I blogged about how abortion for ableist reasons sometimes makes me feel conflicted as someone who is both pro-choice and opposed to ableism, and how I deal with that conflict. Alex Spourdalakis’ story brought up some internal conflict as well, once my friend explained his statement…how could I be so judgemental of Dorothy Spourdalakis for denying her son the right to live based on her own needs, when I essentially gave women who had abortions a free pass for doing exactly the same thing?

“That’s *not* what I do,” I said.

“Isn’t it?”

I went home and thought about it.

And lost a bit of sleep.

And decided that no, that’s *not* what I do, although you’re certainly welcome to disagree.

Sounding the Same, But In Fact Very Different

Very soon after starting this blog and reading other peoples’ blogs, I started coming across perspectives that made me question, for really the first time, what my stance on abortion was going to be if I was going to be a disability activist. It was a more complicated question than I’d thought, and it made me fine-tune my stance to “It’s not a baby until it can live outside the mother” which can both simplify and complicate the whole business.

For the purposes of my friend’s query, however, it makes things very simple — for me.

I mentioned earlier that I wasn’t using the word “murder” in this context to evoke emotion because Alex was legally murdered. I just as deliberately *won’t* use the word “murder” when I’m talking about abortion because “murder” is a legal term that presupposes that a fetus is a person. And there’s where the rubber hits the road for me. My friend may be correct in that the language that I use to talk about the murder of disabled children sounds like the language that some (not all) pro-life people use to talk about abortion, but the two situations couldn’t be more different in my eyes.

Alex Spourdalakis was a person with rights guaranteed to him by both the United States Constitution and by the United Nations. He was a minor in his mother’s custody, which meant that she was responsible for his well-being. Her rights as a US citizen do not guarantee her a child that is easy to take care of, but in the state of Illinois a parent can voluntarily surrender a child should care of that child become too difficult for the parent to manage — it’s a drastic step involving relinquishing parental rights, but it’s not as drastic as making a profoundly ableist assumption that a disabled child has no chance at happiness in life and that death would be preferable to life in “the system” and committing murder based on those those assumptions.

Even though Dorothy Spourdalakis’ intention was obviously to kill herself after murdering Alex, her suicide note indicated that his murder was about what *she* couldn’t deal with putting him through anymore and with what she didn’t want for him (as it seems to often be in these cases.) A picture circulated through the media, showed the following excerpts from her handwritten note, touted as reasons that Dorothy believed Alex Spourdalakis was better off dead:

  • Alex will not be neglected and abused by the medical community anymore.
  • Alex will not suffer under “the system”
  • Alex will not be discriminated against anymore
  • Alex will not be treated as “retarded” or less than human because he is disabled and cannot speak for himself.

I have empathy for parents that are beaten down by a lack of support and the pain of seeing their beloved children suffering. I really do. But justifying the murder a 14-year-old who is “disabled and cannot speak for himself” in the name of getting him away from those that would treat him as “less than human” would be laughable if it wasn’t so infuriating. After all, what could be more dehumanizing than deciding that you have the right to take that child’s life based on your assumptions on his feelings about it? So forgive me if I can’t buy Dorothy Spourdalakis’ noble-sounding rhetoric.

Murdering your child because of any of the things she mentioned (or, as I believe it more accurately is, a parental desire not to see a disabled child deal with those things) is not okay. It’s simply not.

Which brings me back to what my friend said to me. As I said, Alex Spourdalakis (and Tracey Latimer, and everyone on this list of disabled people murdered by parents or caregivers, which is only current to the end of 2014) were people that were murdered. They had legal rights that a fetus (or developing child, if you prefer) doesn’t — and that I’m not invested in fighting for a fetus to get, frankly (or interested in arguing about why that position is right or wrong.) That’s a whole other fight to me, and one that, for a variety of reasons, I’m not willing to take on.

I do feel very strongly about the murder of disabled people and the how their murderers get the sympathy of the public and media and the leniency of the justice system. It’s a fight that I *will* take on because it’s simply not right.

Bottom Line

So that’s why my friend’s challenge to my thinking didn’t make me lose (much) sleep — and why I’ll continue to fight to make sure that:

1) There’s more investigation into why parents get pushed into these places of desperation, where murdering their disabled children seems like the only option for dealing with the challenges that they encounter on that journey

2) Ableism in all forms continues to be recognized and eliminated as much as possible.

3) Safe and affordable abortion is available to all women, regardless of their reason for making that choice.

I can manage wearing conflicting advocate hats, but I’m glad that people call me on it when my thinking appears inconsistent. I need that to stay the best advocate I can be.

Rest in peace, Alex Spourdalakis. I will not forget you.

Please read the Autistic Self-Advocacy Network’s Statement on the Sentencing of Alex Spourdalakis’ Murderers

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FDA to Ban Electrical Stimulation Devices used at Judge Rotenberg Center – Public Comment Invited

Two years after a federal advisory panel met to discuss the Judge Rotenberg Center’s use of electrical stimulation devices in behaviour modification protocols, the Food and Drug Administration has announced its intent to ban the devices. This is something a lot of people (including a past employee of the Judge Rotenberg Center) have been waiting  a long time for.

Content Warning: Torture, Abuse, Aversive Skin Shocks

"JRC" in navy letters behind a red circle with a slash through it. Underneath. in black letters: "STOP The Torture! Close It!" Keyword: Judge Rotenberg Center

Image Description: “JRC” in navy letters behind a red circle with a slash through it. Underneath. in black letters: “STOP The Torture! Close It!”

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The Judge Rotenberg Center is a facility for children in adults with developmental disabilities. It is located in Canton, Massachusetts, and has been open since 1971. It employs a number of controversial behaviour modification practices, but the most controversial by far is the use of aversive skin shocks delivered via devices called Gradual Electronic Decelerators in response to self-injurious or aggressive behaviour. Judge Rotenberg Center is the only place in the United States that still uses aversive skin shocks to condition behaviour.

Judge Rotenberg stands by its use of aversive skin shocks as an alternative for individuals for whom no other treatment is working, and insists that individuals and their families depend on it. But significant questions surround the use of the practice:

This is just a partial list. For more, read my last post on the Judge Rotenberg Center or visit Lydia Brown’s blog.

The meeting of the federal advisory committee about the Gradual Electronic Decelerators and the aversive skin shocks was a chance for both those for and against their use to make a thorough case. The meeting was in front of the FDA, in order to help them make a decision about the GEDs and the use of aversive skin shocks.

Click here to read the transcript of the FDA meeting, including testimony by autism activists Lydia Brown and Ari Ne’eman

This 126-page report also came out of the investigation into the GEDs and use of aversive shocks.

Judge Rotenberg Center – If I Had My Way…

Even if you haven’t read my past writing about the Judge Rotenberg Center, if you know anything about me I think you can likely predict where I come down on the use of electric shock as behaviour modification on anyone. I’m not an expert on conditioning, but I know enough about it…and behaviour modification programs…and basic human rights and ethical treatment, for God’s sake…that I know that even when there seems like no other alternative, delivering a skin shock to get a person to stop an “undesired” behaviour is totally unacceptable from an institution that claims to be providing support services.

Totally fucking unacceptable and something that we should not be condoning implicitly or explicitly. I’d love to see the Judge Rotenberg Centre closed down tomorrow, and think it should have been closed down years ago.

Seeing them get their electric toys taken away?

It’s a damn good first step.

The FDA Wants to Hear From You

On April 25, 2016, the FDA issued its Proposal To Ban Electrical Stimulation Devices Used To Treat Self-Injurious or Aggressive Behavior.   The Summary states:

The Food and Drug Administration (FDA or we) is proposing to ban electrical stimulation devices used to treat aggressive or self-injurious behavior. FDA has determined that these devices present an unreasonable and substantial risk of illness or injury that cannot be corrected or eliminated by labeling. FDA is proposing to include in this ban both new devices and devices already in distribution and use.

This is not an official ruling. It’s a proposed rule that outlines why the FDA wants to bans electrical shock devices, and it’s very thorough – definitely worth reading, especially since the FDA is inviting public comment on the proposed ruling until May 25, 2016, with a specific request for comment on their proposed effective date. Comment can be provided in a variety of formats, and information on how to submit comment is listed on the Proposal.

If you have an opinion on this issue, now is the time to make it known! Remember, the Judge Rotenberg Center is presently the only entity affected by this ruling – when the electrical stimulation devices are banned, the facility cannot use them anymore. Ever.

Speak your mind to the FDA, and let’s get this chapter closed.

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Jim Carrey Tweets Picture of Autistic Youth Without Permission During Anti-Vaccination Rant

Canadians, who tend to be at least supportive of Canadian actors just because they’re Canadian, have always been a bit divided about Jim Carrey. He’s one of those “love him or hate him” actors. I’ve enjoyed a few of his films. I’ve not enjoyed more of them. A few of them I haven’t bother to see, I’m that convinced that I’d hate them.

Content Note: Anti-Vaccination Rhetoric and Autism, Exploitation, Dehumanization, Non-Apology
Cartoon. Woman with long red hair, wearing a nurse's uniform, sirs next to child with orangish hair, wearing jeans, a yellow sleeveless top, and sneakers. She is giving the child a needle. Keyword: Jim Carrey

Image Description: Cartoon. Woman with long red hair, wearing a nurse’s uniform, sirs next to child with orangeish hair, wearing jeans, a yellow sleeveless top, and sneakers. She is giving the child a needle.

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I don’t usually let an entertainment figure’s stance on an issue dictate whether I’ll see one of their films, with some exceptions. I had some serious issues with “The Passion of the Christ” and some of Mel Gibson’s public remarks, and now tend to avoid his work. I avoid some comedians because they use the R-word.

I knew that Jim Carrey’s stance on vaccinations being toxic is quite strong, but I don’t stop talking to people because they hold those views.  I didn’t see any need to boycott his films on that basis. And I still don’t.

But last week he took some the steps to get his anti-thimerosal/anti-mercury message out (Carrey insists that he’s not anti-vaccination, but against the addition of these substances in vaccinations) that crossed a line for me, and those steps have put me at “boycott” point.

Jim Carrey Uses Alex Echols’ Picture in Rant About California Vaccination Law

Upset by the law officially put into place in California last Tuesday that children must be vaccinated in order to attend school, Carey went on a 30-tweet rant about the chemicals in vaccinations, calling California governor Gerry Brown a “corporate fascist” and using images of children in distress, implying that the thermosil in their vaccinations had caused the autism.

“Salon” web magazine tells us the following about the pictures that Carrey tweeted:

  • Two pictures of crying boys were stock photos.
  • The third was of 14-year-old Alex Echols.

Alex’s picture was used without permission.

His mother, Karen Echols was very upset, and tweeted to Carrey:

“Please remove this photo of my son. You do not have permission to use his image.”

She explained later in an Instagram posting that Alex’s autism is caused by tuberous sclerosis and that he was showing signs of being autistic before he was vaccinated.

Jim Carrey removed the photo and apologized:

“I’d like to apologize to the Echols family and others for posting a pic of their kids w/o permission. I didn’t mean to cause them distress.”

I love a good non-apology.

Dehumanizing Autistic People

Cara (no last name given) nailed why Jim Carrey’s action were inappropriate in her blog post, ‘An Open Letter to Jim Carrey‘. She talks about how Jim Carrey used pictures of children in distress, one that we can confirm is autistic, hoping that they’d scare people into seeing his point of view, and his hopes that people would say, “Oh my goodness, we don’t want our children to turn out like *that*, we’d better not vaccinate!” She talks about how static pictures are inherently dehumanizing, and how autistic people as a group don’t need anything more that dehumanizes them – in the last five years, 80 autistic children and adults have been dehumanized by their parents and caregivers to the point where they’ve been murdered.

Kudos, Cara, for beautifully expressing why Jim Carrey’s actions were so wrong.

Cara touches on the other form of dehumanization that went on.

Shame on You, Jim Carrey

The picture of Alex Echols that Jim Carrey used has been used in a couple of media pieces. Is it fair use? I’m not sure. I wouldn’t use it without permission for a number of reasons, the least of them being that I figure that it’s been posted in enough places by now that Alex doesn’t ever need to come across it in another. But even if it is fair use, Jim Carrey did not use it fairly. He co-opted it for his own cause, with no concern for whether Alex and his family would be okay with that, and in his apology he didn’t say that he was wrong. That he can claim to be so passionately concerned for child safety but exploit a disabled child in that way makes me angry, and very concerned that he didn’t have that insight into why what he did was wrong until someone called him on it.

It was another level of dehumanization: “I’m just going to pick you up and drop you in my cause and I don’t care what you think about it.” Shame on you, Jim Carrey.

Yes, shame on Jim Carrey, because he didn’t have to go further than Facebook to see that Alex is a growing, learning, person, deeply loved by his family and support staff.  Because they’re better people than I am, the Echols family is grateful for the awareness that this incident with Jim Carrey has brought to tuberous sclerosis and to the challenges that Alex faces every day.

And he could only manage a non-apology on Twitter.

Learn More About Alex and his Family

Another Website About the Echols Family

Learn More About Tuberous Sclerosis and Autism

 

 

Happy Canada Day…and Yay for the SCOTUS Ruling on the Affordable Care Act!

This is my fourth Canada Day post. But I’m posting a bit early because I meant to write a post over the weekend congratulating America on the Supreme Court of the United of the United States ruling on the Affordable Care Act last week, and haven’t got to it yet…and I figured that the two posts would fit well together, because all of my Canada Day posts have been about how Canada’s universal health care system is one of the reasons that I’m most proud to be Canadian.

Content Note: Healthcare, same-sex marriage

White maple leaf on a red background with "Happy Canada Day!" in red script across it. Keyword:

Image Description: White maple leaf on a red background with “Happy Canada Day!” in red script across it.

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Long-time readers will know that I’ve been a clear supporter of the Affordable Care Act from the outset. I feel quite strongly that everyone should have access to good health care regardless of their ability to pay for it. Which is why I love the liberal judges on SCOTUS so much for squeaking this ruling through, because now it’s. Not. Going. Anywhere.

CNN said about the ruling:

“The ruling holds that the Affordable Care Act authorized federal tax credits for eligible Americans living not only in states with their own exchanges but also in the 34 states with federal marketplaces. It staved off a major political showdown and a mad scramble in states that would have needed to act to prevent millions from losing health care coverage.”

I realize that Canada’s system of universal health care looks less like what’s in place under the Affordable Care Act than it does the single payer system with which America toyed, but I think that any health care system with a mandate that as many people as possible should have access to medical care is one in which people can take pride.

Laws like the Affordable Care Act and Canadian Medicare move quality, high-cost medical treatment from the realm of the very privileged to that of people who can’t afford good insurance and certainly can’t afford to pay medical costs out of pocket.

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

Because I live in Canada, cost to me (and ultimately to my family, as I had next to no money when I discovered that I’d need brain surgery) wasn’t a factor in my decision to have my AVM treated, or in determining how long I could stay in inpatient rehabilitation after my stroke, or in deciding what kind of follow-up treatment was appropriate and when. That’s a tremendous gift to people who are facing a health crisis, and to their families, who already have so many things to worry about (and, for families who live in rural Canada, may already have to incur substantial costs associated with travel/lodging/food while dealing with loss of income). I’m proud that I live in country where people feel that providing this sort of care to citizens should be a priority, and proud to be neighbour to a country that is moving in the same direction. High five, America, and  Happy Canada Day to all!

Oh, there was another very important SCOTUS ruling last week definitely needs a mention. I was online when word came out that SCOTUS had made gay marriage just “marriage” in all 50 states, meaning that now people can marry who they like (there are still some restrictions on disabled people, but I’ll get into that another day), and the rainbows went over social media in a wave. It was really something to see.

Again, congratulations, America!

I’m proud to say that Canada has been doing this for 10 years.

You’ll love it! 🙂

 

 

 

 

 

 

 

Revisiting The Goodwill Controversy: Slave Wages Aren’t Cool

I know that I’ve posted before about Goodwill’s practice practice of paying its disabled workers next to nothing. but it all bears repeating.

Content Note: Ableism, sheltered workshop, sub-minimum wage, discrimination

A drawing of a hand, white, at the end of an arm wearing an aqua suit with cuffs of a white dress peeking out at the wrist, dangles a bill of indeterminate worth (aqua with a dollar sign in a white circle centred on it) over two figures who jump and grab for it. They are wearing grey blazers, black pants and orange ties, and we can't see their faces. They cast black shadows on an orange floors. The background is light grey. Keyword: Goodwill

Image Description: A drawing of a hand, white, at the end of an arm wearing an aqua suit with cuffs of a white dress peeking out at the wrist, dangles a bill of indeterminate worth (aqua with a dollar sign in a white circle centred on it) over two figures who jump and grab for it. They are wearing grey blazers, black pants and orange ties, and we can’t see their faces. They cast black shadows on an orange floors. The background is light grey.

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After viewing this video about Goodwill, I’m all fired up.

The issue is that Goodwill employs 7000-8000 disabled people in America who, due to a loophole in the Fair Labor Standards Act of 1938, legally don’t have to be paid minimum wage. And Goodwill takes advantage of this – some disabled employees get  paid as little as $0.22 an hour. It’s all documented.

Goodwill operates sheltered workshops for its disabled employees. Regular readers will know that I’m not a fan of sheltered workshops for a variety of reasons: they promote exclusion and segregation, they pigeonhole people into performing certain types of tasks, they encourage society to  of the work of disabled people, and they’re environments in which it’s difficult even for staff to assist the people they support to reach their full potential. Goodwill’s operation is a particularly good support for the idea of totally abolishing sheltered workshops, in my opinion (one that’s shared by the head of the National Federation of the Blind, Mark Maurer, interviewed in the video).

Goodwill and Employment Discrimination: The Thing Is…

Head of Goodwill International Jim Gibbons is disabled himself, so you’d think that he’d understand these issues. But he’s got it all worked out in his head about why the sheltered workshop model works for Goodwill and its disabled employees, including reasoning for why a company that could afford to pay him half a million dollars last year and that could afford to pay other executives similarly hefty salaries (including $1.1 million dollars in salary and deferred compensation to the CEO of Goodwill Industries of Southern California in 2011) shouldn’t feel badly about paying some of the company’s disabled employees less than a quarter an hour.

In the video, Gibbons spoke about people having the right to define success for themselves, about how everything at Goodwill is focused on the workers and “their strengths, their skills, and their abilities” and went on to comment, about Goodwill’s disabled employees: “It’s typically not about their livelihood. It’s about their fulfillment. It’s about being a part of something, and it’s probably a small part of their overall program.”

Gibbons wasn’t talking like he was the head of a company whose management model includes large-scale use of sheltered workshops. The language that he was using, about being committed to having disabled in an employment environment that uses their strengths, skill sets and abilities, is the language of the much more progressive person-centred approach to support.

It pisses me off that Jim Gibbons has appropriated this language to describe what’s going on in Goodwill (all suggestions appear to be that it’s not). It makes me feel sick to my stomach that he’s twisted it to imply that the people who are questioning his discriminatory employment practices are the bad guys, because everyone has the right to define success for themselves and for most of his disabled employees their take-home pay isn’t their measure of their success as a Goodwill employee.

Meet Me at Camera Three, Mr. Gibbons

Mr. Gibbons, you made $729 000 in 2011. Let’s say, for the sake of argument, that you worked 50 hours a week. That’s $280 an hour.

The employee that works 40 hours a week at $0.22 an hour has to work almost 32 weeks to make what you make in an hour, as opposed to 1 week at the $7.25 that non-disabled Americans get for the work that they do.

It’s easiest to abuse the people who don’t know that they’re worth more than the treatment they’re getting, don’t know that anything better exists, or who don’t have the resources (which more often than not require money) to help them to get out of a bad situation. You take people who already are at high risk of living in poverty, some of whom have never had a job, some who are desperate to be employed in a society where they can’t find work (or both), and you exploit economic need and the desperation for employment by paying them slave wages – and then have the nerve to twist it into, “But look how much good we do for them, and how committed we are to them.”

Some will stay because they don’t feel that they have a choice, even though they feel trapped and unhappy. But others will stay because they simply don’t realize what’s being done to them – that for (not enough, but many) people, having a job means that they get paid enough of a wage to meet their basic needs as well as having work to do that they like each day. They’ve never had a job that was like that.

That’s not making the community a better place. That’s being a huge part of the problem. And until you start to become part of the solution, Goodwill will not get my support again.

Goodwill is a tax-exempt, non-profit business that brings in over five billion dollars a year AND that gets hundreds of million dollars a year in American government funding. They’re supposed to be helping communities. Use your power as a consumer and make them accountable for the promises that they make, starting with how they treat the most socially vulnerable of their employees.

Learn more about the Brian Williams video

Jim Gibbons has responded to critics of Goodwill’s employment practices

Goodwill’s full statement

“Disturbingly One-Sided” – Annette Corriveau and the Right to Kill

I wondered why I was hearing Robert Latimer’s name recently. It turns out that on Friday there will be vigils around the United States, in cities including New York, Washington, Chicago, Boston, Tampa, Fla., Fort Worth, Texas and Portland, Ore.,  for people with disabilities who have been killed by their caregivers. But it’s been the profile of Annette Corriveau on “16 x 9”, a program run on Canada’s Global Television Network, that’s put Latimer (and the question of “mercy killing” for people with severe disabilities) in the spotlight in Canada again.

Content Warning:  Parent killing disabled child, parent fighting for right to kill disabled children, institutionalization, ableism

Large yellow happy face icon, with a lopsided frown and furrowed eyebrows. Keyword: Annette Corriveau

Image Desciption: Large yellow happy face icon, with a lopsided frown and furrowed eyebrows.

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For those that don’t know Robert Latimer, he was convicted of second degree murder when he put his daughter, Tracy, in the cab of his pick-up and killed her using carbon monoxide. Tracy was twelve years old and had severe physical and intellectual disabilities due to cerebral palsy. Robert, convinced that she was in unendurable pain, said that he didn’t want her to have to deal with it anymore. Normally a second degree murder conviction carries a life sentence in Canada, but he was released from prison with life on parole in seven years.

Annette Corriveau, according to “16 x 9”, is very much where Latimer was when he made the decision to kill Tracy. She wants to right to kill her two adult children, Jeffrey and Janet, both living with severe disabilities due to San Filippo syndrome and institutionalized for most of their lives. She made the decision that this is what she wanted to do when it became necessary to feed them via feeding tube so that they won’t choke. She doesn’t believe that they would choose to live like this, so she would like the legal right to end their lives.

Annette Corriveau and Robert Latimer Got to Speak…

I get that it’s very difficult to watch your child’s health and abilities keep deteriorating, especially when they’re in pain. Tracy was having seizures that routinely disconnected her hip. It had to have been terrible.

And I know that there’s little support in every way in Canada for caregivers of people with disabilities. There’s very little respite money or opportunities available. Supports are being cut back everywhere. The struggles are difficult to talk about. It’s a tough, often thankless job.

Additionally, for parents who are looking after children with severe disabilities, there’s always that mourning for the dreams that they had for the child. That’s why I’ve always liked “Welcome to Holland”, a story with which I’m sure many of you are familiar.

I recognize that this sort of parenting is very difficult, and empathize with the parents. However…

Who Speaks for Jeffrey, Janet and Tracy?

The “16 x 9” profile was, as anti-euthanasia activist Alex Schadenberg said, “disturbingly one-sided” . It was riddled with ableist language and assumptions. The staff that work with Jeffrey and Janet on a daily basis, that would be able to testify to the ways in which they communicate, were not interviewed.  The reporter did not challenge Annette Corriveau at all on her conviction that her children do not want to live the way they are (just because she felt that she would not choose to live if she was living that way), or ask if she’s worked with the facility in which they live to take steps to make their lives more “bearable”.

For example, it was brought up several times that Janet has not left the facility in over 20 years, but the reporter never asked Annette Corriveau if she’d worked with the facility to try and arrange some trips out into the community.

The documentary obviously took the stance that what had happened to Jeffrey and Janet was horrible and that no one could blame Annette Corriveau for thinking the way she was, like she was the victim of some cosmic tragedy that no parent should have to endure…and therefore jusified in stopping her pain in whatever way she could.  After all, as the reporter pointed out, more than half of Canada and most of the jury actually supported Latimer’s actions while the trial was going on.

I find all of this profoundly disturbing.

Reporter: “Is any of this about you?”

Listening to the interview with Annette Corriveau, and the interview with Latimer that was included in the segment, I had no doubt that these parents love their children. But I don’t buy that Latimer killed Tracy (at least solely) to ease her pain, or that Annette Corriveau wants to kill her children out of concern that they wouldn’t want to live that way. I think it’s more about parents that can’t stand dealing with the pain that their childrens’ “suffering” causes *them*. And when you don’t know how much someone is actually suffering, or what they’d like done about it (in Tracy’s case, at her age, no responsible clinician one would even have thought of asking her “Do you want to die?” if she’d not had an intellectual disability)…it’s just plain wrong.

Ask, don’t assume.

All people deserve the dignity of making their own life choices. No matter how *you* feel about what living their life must be like.

I can only be empathetic with the Robert Latimers and Annette Corriveaus to a point, and frankly I’m glad for it.

The whole “16 x 9” segment is available for viewing here

See the Council of Canadians with Disabilities’ response to the program

 

 

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