Category Archives: news

“We’re not his kids, we’re adults, and we’re our own people”: The Trouble with the Jerry Lewis Telethon

Today is Labour Day in Canada and the US, which for many people means the end of the Labour Day Weekend Jerry Lewis Telethon. Wikipedia conveniently describes the Jerry Lewis Telethon so I don’t have to:

The Jerry Lewis MDA Telethon (also known as The Jerry Lewis MDA Labor Day Telethon and The Jerry Lewis Stars Across America MDA Labor Day Telethon) is hosted by actor and comedian, Jerry Lewis to raise money for the Muscular Dystrophy Association (MDA). It has been held annually since 1966. As of 2009, the telethon had raised $2.45 billion since its inception. It is held on Labor Day weekend, starting on the Sunday evening preceding Labor Day and continuing until late Monday afternoon, syndicated to approximately 190 television stations throughout the United States.

On the surface this probably looks like a good thing, but digging a bit deeper: For many people, this is one of the few times they’ll see images of people with disabilities on their t.v. screen (and from a noted authority and beloved celebrity), and the entire thing is one drawn out pity parade.

Since 1991, protesters, including Laura Hershey and Mike Irvine, have tried to raise awareness about the way that the Jerry Lewis Telethon, and Jerry Lewis himself, treat actual adults with disability, and have discussed how these sorts of pity parades affect the public perceptions of people with disability. In 2001, Hershey wrote:

As we in the disability-rights movement keep trying to explain, our biggest problems come not from our physical conditions, but from a society that fails to accommodate us. Lewis’s telethon plays up the problems, without suggesting their sources or solutions. For instance, those sappy vignettes will make much of an “afflicted” person’s inability to wash his own hair, or get herself to the toilet, without any discussion of the urgent need for publicly funded personal assistance, or of the problems posed by the architectural barriers designed right into the layout of most private homes.
Trouble also arises from the fact that thousands of families dealing with disabilities in the U.S. and Canada are denied adequate medical care and equipment – necessities which should be basic human rights, not handouts accompanied by a drum roll and tally.

I’ve written about my disdain for both the Telethon and for the praises Lewis gets despite referring to people with disabilities as “half-persons” who should “stay at home”, and I think this is still an idea that people find very challenging. It’s easier to view these sorts of fund raising telethons as doing Good Things. They are supposed to, after all. That it’s still leaving people with disabilities begging for basic rights, access, and assistance that shouldn’t be necessary in this age of the Americans with Disabilities Act (ADA) and Accessibility for Ontarioans with Disabilities Act (AOWD) isn’t comfortable to think about. That the main use of these funds is for finding a “cure” – by which they mean a pre-natal test – rather than assisting families in purchasing wheelchairs or renovating a home to make it wheelchair accessible, or in assisting people with disabilities in getting support during or immediately after a move seems to surprise people. Your money isn’t going to help actual people with disabilities. It’s going to help the Muscular Dystrophy Association, and to aid Jerry Lewis in his continued insistence that he’s a humanitarian. These are not really the same things.

Many people with disabilities have written about their perceptions of these telethons, and the damage they do, as well as the issues with giving a humanitarian award to a man who treats actual people with disabilities with such disdain. Hershey’s most recent columns are Speaking Out against the MDA Telethon and Laura’s Labor Day Weekend Column. Liz Henry wrote last year about her dose of morning rage regarding the telethon, and there are many links there that highlight the issues around Jerry’s Kids. There’s also the 2007 Blogswarm, Protest Pity, which features more than 35 blog posts about the Telethon and the Protests. You can also read From Poster Child to Protester, which may be the first thing I ever read about the protests and the Issues with Jerry Lewis.

Sometimes, though, the best way to combat the pity parade is to show people with disabilities talking about their lives, and their lived experience. Laura Hershey made this video as part of the “It’s Our Story” Project. Transcript follows:

Transcript:

The ‘It’s Our Story’ titles roll while tinkly piano music plays. White symbols of sign language and a person in a wheelchair flash against the background, which is suggestive of a US flag, with the continental United States in the blue square instead of the usual 50 stars.

The video opens on Laura Hershey, a powerchair user wearing a nasal cannula and glasses. The title of the video is “Jerry’s Kids”, and I believe she’s referring to the group “Jerry’s Orphans”.

Laura: That’s actually a group that was started in Chicago by Mike Irvin, Chris Matthews, and several other people. And I worked with them a lot organziing these protests nationally. I think what the name says is that Jerry Lewis doesn’t have the right to claim us as his quote “kids”, especially as he’s not interested in our perspective. He completely trashes people who question or challenge the telethon approach. He’s attacked us in the press, calling us ungrateful, claiming that he bought us our wheelchairs which is, you know, completely untrue.

You know, whatever ego trip he gets thinking of himself as our saviour, or our daddy, or whatever it is he thinks, we reject that.

We’re not his kids, we’re adults, and we’re our own people. We don’t belong to him.

Tracy Latimer is dead because her father is a murderer

It’s always hard for me to write a post about Tracy Latimer’s murder, especially in a space that’s got a lot more traffic than my own blog does. Where do I start? How do I express to a new audience the significance this case has in Canada, and how the murder of a 12 year old girl by her father 17 years ago changed drastically how Canadians talk about disability, and how disability is treated in Canada? Where do you start with that?

This post is going to talk about the murder of children with disabilities by their parents. I would recommend avoiding comments in most of the news links, because the comments generally turn into a referendum on whether or not it’s okay to kill disabled children.

Tracy Latimer, who had Cerebral Palsy, was 12 years old the day her father, Robert, waited until the rest of their family was at church and then carried her out to the garage, stuck her in the cab of the truck, ran a garden hose from the exhaust pipe into the cab, and left her there to die of carbon monoxide poisoning. Whenever I talk about this case, I feel the need to remind the reader: this is a means of killing we have made illegal when killing dogs, because it is considered to be so painful. This is the murder people would like you to believe is a “mercy killing”.

Tracy Latimer’s murderer, Robert, then put Tracy to bed, burned the hose that he had used to murder her, and lied to the police about how she died.

This case went to trail twice, and both times Tracy’s murder was found guilty of murder and sent to prison. He has done the bulk of his prison time according to Canadian law, and is currently doing a form of parole where he spends five days in a half-way house, and two days in his own apartment in Vancouver. This is how the law works here – in fact, I would agree with critics that Tracy’s murderer is being treated harshly by the parole board, but I also understand they want Tracy’s murderer to admit that maybe killing a child and trying to hide the evidence is a crime and that he should show some remorse. But we don’t really send people to prison here in order for them to show remorse. It’s done, let him go home.

But let’s talk about how Tracy Latimer’s murderer and the court cases around him are typically treated by the press, since Robert is in the press again, having been denied a loosening of his parole.

You’ll notice, I’m sure, that I keep referring to this as “Tracy Latimer’s murder”. If you read the newspapers from across Canada, you’ll instead see it referred to as “Robert Latimer, a Saskatchewan farmer, who was convicted of second-degree murder of his severely disabled daughter”. You will also find it referred to as a “mercy-killing”. Often Tracy’s name will only appear once, as “his 12 year old severely disabled daughter, Tracy”.

May 21, 2010: The Vancouver Sun: Latimer mercy-killing inspires new Ozzy Osbourne song: “The 10th track of Osbourne’s solo album entitled Scream, due out June 22, is Latimer’s Mercy which describes what Latimer may have felt in putting his daughter to death. The lyrics are poetic yet brutally graphic.”

July 28, 2010: The Montreal Gazette: A Wise and Sensible Verdict (This article is actually about an entirely different case, but felt the need to compare it to Tracy Latimer’s murder): “One need only remember Robert Latimer’s killing of his severely disabled 12-year-old daughter. He did it, he said, to release her from her suffering, to mercifully end her life.

Does anyone believe Robert Latimer was a cold-hearted killer?”

July 29, 2010: The Victoria Times-Colonist: Mercy killing can sometimes be honourable: (Same case as the one discussed above) “Similarly, Robert Latimer had no moral choice but to end his daughter’s agony at once by one means or another.”

August 19, 2010: The CBC: Robert Latimer wins parole review “Latimer was convicted of second-degree murder in the 1993 death of Tracy, his severely disabled, 12-year-old daughter, an act he described as a mercy killing.”

August 20, 2010: The Globe & Mail: Give Latimer More Latitude in his Day Parole: “The board needs to accept that he has paid his debt to society. He killed from compassion, according to a jury and a judge, who knew all the details of Tracy’s life and death, and was punished as a deterrent to others.”

The case is fairly consistently presented to the Canadian public as a “mercy killing”, and as the end of Tracy’s suffering. Often Tracy’s life is described as unbearable. Sometimes she is referred to as a “vegetable”. The only person who’s “side” of this story is consistently told is the man who murdered his daughter, and he is painted by the press as a man struggling against impossible odds, doing the only thing he could.

This is not what you read in the press:

In the trials, both Robert and his wife Laura claimed that Tracy was experiencing constant and uncontrollable pain. If this were true then why were they allowing Tracy to suffer when her pain was medically controllable? Their testimony conflicted with the writings in Laura’s own diary pertaining to the daily condition of Tracy. Laura’s diary stated that Tracy was often happy and smiling, and lately she had been eating well. Tracy’s teacher described her as a happy and loving person who did not show signs of extreme and uncontrolled pain, even though she had a dislocated hip. Tracy was scheduled for surgery to repair her dislocated hip which would have alleviated the pain and discomfort she was experiencing. In fact, Robert Latimer was charged with homicide on the same day that her surgery was scheduled to happen (November 4, 1993).

Many people are under the impression that the Latimers were overly burdened and lacking in support and respite service to care for Tracy. In fact, Tracy had lived in a respite home in North Battleford from July until early October, 1993. Tracy had returned home because she was scheduled for surgery. Tracy was also at school everyday. On October 12, just twelve days before Tracy was killed, Robert Latimer was offered a permanent institutional placement for Tracy in North Battleford. He rejected the placement because he said he had ‘other plans’. At this time, he had already decided to kill Tracy.

I harp on the way Tracy’s murder is treated in the press for one simple reason: The number of murders of children with disabilities by their parents has drastically increased in Canada since the Latimer case.

December 5, 1994 – Ryan Wilkieson, 16, Cerebral Palsy, Carbon monoxide poisioning similar the Latimer murder, which was in the news at the time.  Friends of Ryan’s murder, his mother, said she was distraught by the Latimer case. Murder/suicide.

May 28, 1996 – Katie Lynn Baker, 10, Rett Syndrome, starved to death. She weighed 22 pounds at her death. No charges were laid, as no one believed they could get a conviction.

November 6, 1996 – Charles-Antoine Blais, 6, autism, drowned in his bathtub by his mother. Charles-Antoine’s murderer was publically offered a job fundraising for the Autism Society of Greater Montreal, and and the head of Canada’s national autism society described her life as a total misery before Charles-Antoine’s murder. Suspended sentence.

November 21, 1996 – Andrea Halpin, 35, cognitive disabilities – shot to death by her father in a murder/suicide. He didn’t think she could live without him.

December 11, 1998 – Cory Moar,  29, cognitive disabilities – years of abuse by family members. I couldn’t find any more details after the lengthy description of the long-term injuries he sustained, because I had to throw up. You can read the inquest results in this handy PDF. Trigger warning.

May 19, 2001: Chelsea Craig, 14, Rett Syndrome, lethal dose of prescription drugs (attempted murder/suicide) Rachel Capra Craig, diagnosed with paranoid delusional disorder, later killed herself. She had been found incompetent to stand trial.

December 30, 2001 – Reece Baulne, 34, “learning difficulties”, carbon monoxide poisoning. In the suicide note that his parents wrote, they said they were killing themselves and Reece because they couldn’t care for him anymore, having been turned down for government funding.

July 12, 2004 – Jia Jia “Scarlett” Peng, 4, autism, drowned in bathtub by her mother who has been diagnosed with Bipolar Disorder. Scarlett’s murderer was initially sentenced, but the sentence was put aside due to an error on the part of the judge. She was recently sentenced to 5 years, but was released because of “time served”.

July 31, 2004 –  Ian Carmichael, 11, epilepsy and undefined “learning difficulties”, choked to death by his father who was diagnosed as having psychotic delusions as a result of side-effects from taking Paxil incorrectly. You can read David Carmichael’s webpage in which he discusses (briefly) how he murder his son (most of the page is about how Paxil made him do it). Trigger Warning.

September 25, 2004 – Charles Fariala, 36, “assisted suicide” – he first took a dose of medication and then his mother tied his hands and covered his face with a plastic bag. Wikipedia says his mother had Borderline Personality Disorder and this was a factor in her light sentence (3 years probation), but I haven’t found any other reference to her having a mental health condition, just that there were “extenuating circumstances”.

These names are part of the reason why I think Robert Latimer should always be referred to as a murderer, why I think think Tracy’s death should never be referred to as a “mercy killing”, and why I will invite Robert Latimer apologists to kindly find their way to the Globe & Mail website, since they obviously will welcome your comments far more than I will. They will not be published here.

We convict and vilify people for murdering their children all the time. Unless their children are disabled. Then, then, then, it’s “mercy killing”, and they should be defended at all costs.

Mental Health and the Gulf Oil Spill

We are still trying to get our heads around the massive and far-reaching effects of the massive oil spill along the Gulf Coast of the United States. It’s clearly too soon for anyone to even predict what all the effects are going to be, much less estimate the severity or significance of those effects. The spill will affect the environment, the local and national economy, employment, tourism, where people live, even seafood supplies for restaurants. It is also very clear that there will long-term, significant health effects from the spill and the toxic dispersants used by BP to address oil in the ocean.

Putting all of those effects aside, I want to focus on the mental health effects of the spill. Obviously, we are still very close in time to the three month period before July 15, 2010, when an estimated 3 to 5 million barrels of oil spilled into the Gulf of Mexico, so quantifying or understanding the mental health effects is difficult. An initial report from Louisiana State University found that nearly 60% of the 925 coastal residents they interviewed “said they were almost constantly worried by the oil spill.” Another recent study done by the Columbia University Mailman School of Public Health (pdf) gives us some preliminary data on the impact of the spill on the mental health of the coastal population, focusing specifically on the mental health of children. And it is, frankly, not very good news.

The survey was limited to people who live within 10 miles or a 30 minute drive from the coastline in Louisiana and Mississippi. Between 40% and 50% of people had had direct exposure to the oil spill, either by being involved in the cleanup, coming in direct contact with spilled oil or cleanup activities, or who had lost or damaged property as a result of the spill. Excluding children who had emotional or behavioral problems prior to the spill, about 20% of the children in the sample were experiencing mental health problems after the spill. The researches estimate that only about 15-20% of these mental health problems were associated with direct exposure to the spill and cleanup activities, meaning that the remaining 80-85% of mental health problems were among those without direct exposure. Having direct exposure made both adults and kids about twice as likely to report mental health symptoms.

It will be utterly unsurprising to most readers of FWD to learn that mental health problems were related to the race and income of households. Black families were significantly more likely to have mental health problems among both adults and children. Similarly, children in households with incomes less than $25,000 were nearly three times as likely to have mental health problems than children in households with income over $75,000.

The study suggests that these mental health concerns are substantially related to parental concern and uncertainty about remaining in the Gulf Coast area. Households that indicated the family may move away from the area were twice as likely to have a kid with mental health symptoms. As the study says, “the human impact of the oil spill in the Gulf Coast’s “social ecology,” that of its residents, communities, and social networks, may only be accelerated by such uncertainty.”

One woman interviewed by the study told the New York Times how the spill was contributing to mental health problems for her family:

Shannon Drury, a mother of four in Venice, La., said her husband, a commercial fisherman, had been working for BP but was owed six weeks’ pay. For a time after the spill, Ms. Drury was forced to find work as a houseboat cleaner, coming home exhausted at night. Ms. Drury’s 11-year-old daughter has grown more insecure, she said. Another child has developed a mysterious rash that Ms. Drury suspects is infected. Tensions over money, she said, reminded her of the warning from a visiting speaker from Alaska, who said the divorce rate there had skyrocketed after the Exxon Valdez disaster. “I realize what the woman was talking about now, because it puts different strains on your family from what you’ve been used to,” Ms. Drury said.

This kind of mounting pressure is similar to the National Institute of Mental Health’s understanding of how disasters like the oil spill contribute to mental health problems. As NIMH Dr. Farris Tuma explains:

One of the tragedies that we have seen over and over again after large scale disasters, is really a spiraling downward of people who were, maybe, managing to keep their lives together, to keep their emotions and behavioral problems under control. But with some additional stress and some additional disorganization in their community- really became quite disabled by their anxiety, depression, psychosis.

Despite the magnitude of this problem, the current resources available for these families and communities are very limited. One of the women interviewed in the study told the New York Times the only counseling resources to which she had access were a new program started by her church to respond to the spill. All of this suggests that BP should be held responsible for assisting these families with their mental health symptoms resulting from the spill. Unfortunately – and again, unsurprisingly – Kenneth Feinberg, the independent “claims czar” who will decide who gets compensated from BP’s compensation fund, said the fund was not likely to pay damages for mental illness and distress alleged to be caused by the spill.

“If you start compensating purely mental anguish without a physical injury — anxiety, stress — we’ll be getting millions of claims from people watching television,” Feinberg said. “You have to draw the line somewhere. I think it would be highly unlikely that we would compensate mental damage, alleged damage, without a signature physical injury as well.”

Please excuse me while I beat my head against the desk for about an hour or so. The implication that compensating people who have experienced the kind of mental anguish and uncertainty described above would open the door to an endless stream of claims from people who felt mildly upset when viewing television coverage of the spill is so condescending, so insulting, so wildly inappropriate that I’m having trouble responding coherently. This kind of attitude is offensive on a broad level – it minimizes the significant impact of mental health problems by equating them to obviously silly and spurious claims and implies that only physical health problems are “real” problems worth compensating.

But this attitude is even more harmful for Gulf Coast residents. This is compensation that people need in order to seek treatment and assistance with their mental health problems that they are otherwise extremely unlikely to be able to afford or obtain, so denying these claims means they’ll be left to cobble together whatever meager resources they can. As the study discusses, these are not isolated people who live in a vacuum, but will have real and lasting effects on the “social ecology” of the region, affecting entire communities and regions. And the people most likely to be left without any help are those who are already more vulnerable because of their race and their poverty. In short, administering the fund this way and denying these claims will not only perpetuate but actually exacerbate the underlying inequalities in the region, punishing poor children of color for the stigmatizing beliefs held by Mr. Feinberg.

This is especially galling as there have already been suicides linked directly to mental health problems stemming from the oil spill. William Kruse, who had two boats he expected to use for tourism over the summer, was forced to work cleanup for BP and became increasingly depressed and despondent, eventually killing himself in late June. It is almost certain that there have been more suicides that have not received national news coverage. It is unclear whether Mr. Feinberg would consider a gunshot wound to the head a physical injury sufficient to justify compensation of the underlying mental health problem.

Thankfully, the state governments are reaching out to BP for help in this area. Mississippi, Alabama, and Florida have all submitted requests to BP for money to provide mental health services to affected residents. Louisiana has requested $10 million specifically for emergency mental health services to respond to the crisis. (BP has not yet responded to these claims.) We can only hope that these states and the Congressional members who have oversight over the BP compensation fund will continue fighting so that the mental health needs of affected residents can be met.

Thanks to Karen Whyte for the suggestion for this post, as well as for many of the links and materials cited here.

Investigating Disability Hate Crimes in the United Kingdom

The Equality and Human Rights Commission (EHRC) recently announced that it is conducting an inquiry into disability hate crimes, on the basis of research demonstrating that people with disabilities are much more likely to experience hate crimes than nondisabled people. There have been several high profile cases of bullying and abuse leading to deaths in the UK that have attracted public attention in recent years; I see a lot of articles citing the Fiona Pilkington case, where a woman killed herself and her daughter after prolonged inaction on clearly documented abuse.

According to a report  issued by the EHRC (I can only find a .pdf version, unfortunately), disabled persons in Britain are four times more likely to experience violence than other people, and the likelihood of experiencing violence goes up for people with intellectual disabilities and mental illness. Almost half of the people involved in the study reported experiences of abuse. In a statement on the report, the EHRC says:

It is not the disabled person who creates their own oppression. It is others. As Sir Ken Macdonald so eloquently argued in one of his final speeches as Director of Public Prosecutions, we must overcome a prevailing assumption that it is disabled people’s intrinsic vulnerability which explains the risk they face – an assumption unsupported by evidence. At best, this had led to protectionism, constraining rather than expanding the individual freedom and opportunity which greater safety and security should provide. Only by extending the same expectations of safety and security to disabled people as to everyone else can we truly come to address the deficits in our current approach and wake up to the need to act. (source)

The new inquiry is designed to gather more information about harassment and abuse experienced by people with disabilities and what kind of support is being provided when people report it. Poor statistics are maintained on disability hate crimes and the EHRC is also concerned that a lot of abuse is going unreported. There are significant complications when it comes to reporting abuse; what do you do, for example, when your abuser is your caregiver? What do you do when you are not provided with tools for reporting? What do you do when you don’t recognise what is happening as abuse because you haven’t been given information about the dynamics of abuse and harassment and it’s all you’ve ever known? What do you do when the people you are told to report to choose to ignore your reports or claim that there is nothing they can do?

I’m hoping that it will lead to some recommendations designed to combat harassment and abuse, and subsequent action on those recommendations. It’s easy to make statements and write reports about what should be done, but it’s harder to put these things into action. Full integration into society requires being treated like we belong there, and thus far, performance on the part of public servants who are supposed to be ensuring our safety and security has been unimpressive:

Smith [lead commissioner for the inquiry], a wheelchair user, has himself suffered abuse – with “Kripple” daubed over his walls in paint and wooden wedges hammered under his door to prevent it from being opened. “I did call the police, and the first five times it was like, ‘What do you want us to do about it?'” But I did finally get one officer prepared to do something about it and installed a surveillance system. It shows what can happen if the collective denial is challenged.”

Disabled people, says Smith, can literally become “too scared to leave home” because they are “harassed and told to ignore it by everyone else, including public bodies. It’s unacceptable”. (source, emphasis mine)

Smith’s story mirrors the Pilkington case: Repeated reports were made to law enforcement, and nothing was done. Until harassment, sexual assault, abuse, and violence against people with disabilities are treated like the serious crimes that they are, they are going to persist, and they are probably going to grow worse. This requires a fundamental rethinking of the way that disability hate crimes are handled. It requires better training for law enforcement, teachers, social workers, and other people on the front lines who are in a position to intervene.

It requires believing that people with disabilities are human beings.

“Bullying and harassment can all too often escalate into serious hate crimes against disabled people that we have all heard about.

“Harassment in any form is totally unacceptable. Everyone in society has the right to live life in safety and with security.

“For disabled people and for those people with long-term health conditions, safety and security is a right that can’t be taken for granted.” (source)

There is a fundamental lack of recognition in many regions of the world that hate crimes are a problem not just because they involve abuse of individuals, but because they are a reflection of social attitudes. Certain populations are viewed as acceptable targets for abuse by harassers, rapists, bullies, molesters because society has made its indifference to the safety, health, and wellbeing of these populations clear. Inquiries like the one planned by the EHRC are important, and will gather valuable information about patterns of abuse and harassment in the disabled community. They need to be backed up with a genuine movement towards change, a reform of social attitudes, a confrontation of the way that the actions and beliefs of society as a whole contribute to systemic oppression.

Recommended Reading for June 21, 2010

A man in a hand-pedaled wheelchair holds hands with a standing woman below a signpost saying "John O'Groats"
A man in a hand-pedaled wheelchair holds hands with a standing woman below a signpost saying "John O'Groats"

Brine and Kath traveled from Land’s End, England, at the very southern tip of the UK, to John O’Groats, at the very northern tip of Scotland, the two settlements in Britain that are furthest apart, by hand-pedaled wheelchair and bike, arriving in John O’Groats on the summer solstice.

A Voice For Neli [this site is by the mother of a young black man with autism who was recently arrested and harassed in Stafford, Virginia, primarily due to his race and disability status]

My son was traumatized.  He has since been transferred to a mental hospital to receive treatment.  I have placed a link to the story below for the world to see.  How very sensational and yet sinister at the same time.  What is so suspicious about a young man sitting under a tree at the library.  The library is where my son goes quite frequently because there is a teen room there.  What made him suspicious?  Was it because he is a young black male?  Possible gun?  Why was the assumption made that he had a gun when there was no visible gun seen? Again was it because he was a young black man?  These assumptions are what catapulted the events of that day and has turned our family’s life completely upside down.

Bad Cripple – Conjoined Twins, Disability and Ethics

Few books I read cause me to radically alter my preconceived ideas or thoughts. One such book that did this for me was One of Us by Alice Domurat Dreger. Dreger’s book, subtitled Conjoined Twins and the Future of Normal, stunned me. Prior to reading One of Us I thought that the effort to separate conjoined twins was logical, the only viable choice parents had even if the mortality rate for such a procedure was very high. By the time I finished reading Dreger’s book I learned that my preconceived ideas about conjoined twins, largely gleaned from the mass media, was wrong. Not only did I feel enlightened thanks to Dreger but I learned much about what she termed anatomical politics.

Astrid’s Journal – On Disability and Suffering

Disability is not a tragedy. Both of these framings assume that. Someone can be suffering and have a disability, but that doesn’t necessarily mean that the person is suffering because of the disability. (Correlation is not causation!) This immediately reminded me of the first time I fought this terminology, back in 2007. My support worker wrote into my care plan that I suffer from an autism spectrum disorder. I asked her to correct it to say that I have an ASD, which she at first refused. We got into a pretty lengthy argument, in which she used all kinds of ableist misconceptions about the suffering of people with autism, until she gave in and changed the wording. Most of these misconceptions are rooted in the medical model of disability. That is, they assume disability to be an inherently bad affliction, and of course from there conclude that disability is something someone suffers from. Here are a few examples of arguments people use to base the idea that one suffers from a disability, upon…

After Gadget – Lyme Awareness Month, Part I

The next three After Gadget blogs will specifically address Lyme awareness from the service dog perspective:

  • How Lyme can affect your dog, and what you need to know about it (that your vet might not).
  • How Lyme can affect you, and what you need to know about it (that your doctor might not).
  • How Lyme transformed my experience specifically as a service dog partner.

Note: Since this blog series focuses on awareness, I’m honing in on the issues that I think are most important for you to be aware of. My goal is to prevent more cases of Lyme — especially chronic or untreated Lyme — in dogs and people. So, I’m going to skip a lot of general information. For example, telling you the name of the strange organism that causes this disease will probably not be what impels you to rethink the limp that comes and goes in your dog, or that frustrating “flakiness” of your sister-in-law. It won’t change your mind about whether you are taking adequate precautions against tick-borne disease (TBD). On the other hand, I hope this series will.

Leaving Evidence – Creating Collective Access

What is collective access?  Collective Access is access that we intentionally create together, instead of individually. Most of the time, access is placed on the individual who needs it.  It is up to you to figure out your own access, or sometimes, up to you and your care giver, personal attendant (PA) or random friend.  Access is rarely weaved into a collective commitment and way of being; it is isolated and relegated to an after thought (much like disabled people). Access is complex.  it is more than just having a ramp or getting disabled folks/crips into the meeting.  Access is a constant process that doesn’t stop.  It is hard and even when you have help, it can be impossible to figure out alone.

USA Today [so take it with a grain of salt!] – World Cup matches may boost your mental health

Scientists have shown that fans who feel personally invested in a team or, better yet, who attend games and cheer along with like-minded fans, reap the mental health benefits that come from a feeling of social connectedness. “The main thing that people achieve via sports fanship is a sense of belongingness, or connectedness, with others,” said Edward Hirt, a professor of psychological and brain sciences at Indiana University. “Sharing a common allegiance with others bonds people together in a special way. We can relate to others who share fanship with our team and feel a camaraderie with them that transcends ourselves.”

I Bet It’s Exactly Like That!

[Trigger Warning for descriptions of violent thoughts of self harm]

Oh, by now, faithful readers, you know where we are about to go. We are about to go on a little journey into my mind, the scary place that it is, where I open the floor to discussion about the ways that, once again! Stars and Stripes has managed to get so much so wrong. Because tonight, gentle readers, as I clutch the place that might be close to where my duodendum is and sip my Korean Red Ginsing tea, which the lady at the market told me might help my indigestion, I am reminded once again that I am my mental health are nothing but a metaphor to be co-opted at someone’s convenience!

Let me give you a little background here, because the only online version I can scrape up is this e-version of the print edition, and while WAVE found no accessibility issues with it, I am not going to guarantee that it will be accessible to everyone or accommodating of everyone’s needs. It is, however, a way around their habit of not putting all of their content in their online version (and also allows deployed troops to access the daily paper as well). The front page has the story’s picture, of a white male soldier in Army Green uniform: a light green collared shirt, black tie, green jacket with various awards and pins, a black belt, a black beret, holding a rifle with a bayonet affixed to it. The text on the photo says “Model soldiers [break] Every detail counts when you’re trying to join the storied Old Guard”. The actual article starts on page 4 if you are so inclined to read.

The Old Guard is a ceremonial guard that headquartered out of Fort Meyer, VA, and performs most of its duties in Arlington National Cemetary, similar to the Navy’s Ceremonial Guard, in that they perform many military funerals daily with the cleanest of precision. Their military bearing is expected to be above and beyond that of any other in their branch of service. Their uniforms are expected to be ridiculously perfect, with exquisite attention to the finest aspects of the details, not missing a single loose thread or even a speck of lint. A scuff on your shoe could set you back a week in training. They stand grueling hours at “attention” (The Navy’s Ceremonial Guard does this while holding the business end of the rifle and keeping the butt parallel to the ground for hours, I do not know about the Army’s Old Guard. Full disclosure: I once and briefly dated a guy from the Ceremonial Guard). Everything you know about military bearing is wrong when you arrive for duty, and it is re-taught to “look better”, including the way you turn, march, stand, dress, and press your uniforms (you are even issued special dress white uniforms that are made to withstand the repeated ironing in the Navy Ceremonial Guard).

Do you see what I did there?

I was able to give you some brief background on the very strict regulations of the Old Guard and the Ceremonial Guard without using ableist language. I didn’t once have to compare soldiers or sailors who are required to iron their uniforms exactly right, or who are trained to notice when their medals are one sixteenth of an inch off from the proper dress line to someone who actually obsesses over things like drinking bleach or shoving cork screws in her eyes. Or what it would feel like to jump from a fifth floor balcony.

Because these, my gentle readers, are actual obsessions. They actually intrude on your thoughts and disturb your life, and are really very upsetting, I can assure you. They make you do things, like pull out your hair, burn yourself with a curling iron, wash your hands again and again, and pick at the little imperfections on your skin. Yes sometimes you even iron your uniform again and again and again because you just can’t get it right and double creases are the End of The Universe as We Know It, but it might be because you are certain that if you stop then you are going to iron your hand, not because your Leading Petty Officer is going to chew you out (or your whole division, I mean, does the article expect me to believe that the entire Old Guard has Obsessive Compulsive Disorder? Because that is not on the application!) but maybe because you recently thought that you might do something very harmful to someone you loved if you stopped holding that iron very tightly. Even if your LPO has put the fear of Cthulhu in you.

Being part of an elite military unit who is honored to be charged with memorializing the fallen and handing flags to their loved ones* or escorting the President or guarding the Tomb of the Unknown Soldier is a pretty powerful thing, I am sure. The end result of the intense training, of the weeks and weeks of repeated inspections and physical demands, might very well leave some people with OC tendencies or maybe even OCD outright I suppose — I am not a doctor I don’t know and I don’t pretend to know every experience — but it isn’t the same as living with a condition that sometimes (OK, often) inhibits your day to day ability to live, interact, and (here’s the important one) do your job because you are busy carrying out compulsions to get the damned obsessions out of your head.

Yeah, getting worked up over a uniform inspection? I bet it’s exactly like that!

Only, I’ve been there and done that and bought the cheap t-shirt (hell, I’ve been the OC girl who has had to prepare for uniform inspections!).

It isn’t anything like that at all.

*I want to also point out that the article, for those of you who aren’t able/don’t want to read it via the e-reader the requirements for Old Guard: Must be 5’10 or taller, must have combat experience, blah blabbitty blah. Nothing like another exclusionary Old Boys Club for the military, so they can sit around and pat each other on the backs about how Awesome! they all are. I might note, out of some Branch Pride that the Navy Ceremonial Guard frequently wins the Joint Service competitions and they have *gasp* women in their guard.

Oh, and those people receiving flags? Always widows. Always. Way to erase anyone else who might be a surviving loved one of a fallen troop, there S&S, Army, and anyone else involve. UGH!

Recommended Reading for June 3, 2010

Two totally adorable golden lab puppies with floppy ears, wearing blue cotton bandanas with the tag "Service Dogs."
Two totally adorable golden lab puppies with floppy ears, wearing blue cotton bandanas with the tag "Service Dogs."

Service puppies in training!!

Miami Herald – Embedded therapists protect National Guard members’ mental health

Roger Duke is a Vietnam veteran, a retired Marine lieutenant colonel and a licensed marriage and family therapist. Since 2006, he’s spent at least one weekend a month embedded with a California National Guard unit. Duke, 57, wasn’t deployed with the unit’s soldiers in Iraq and Kosovo, but he’s a trusted face whom the soldiers confide in before and after their deployments. “Some of the best conversations I have with them are at one in the morning in a Humvee during a training exercise,” said Duke, who’s part of a California program designed to help returning Guard and Reserve members by attaching mental health counselors to their units.

Threadbared – Hanky Pancreas: insulin pump accessories and cyborg embodiment [this post was so nuanced and complex and beautifully written that I hesitate to even do a pull quote because I strongly (strongly) encourage you to click through and read the whole thing]

Floeh’s designs permit wearers to make a strategic double-move around camouflage and visibility, simultaneously hiding the pump and drawing attention to its location (i.e., waist, hip, bustline). When I’m in disability-pride mode, I’m troubled by this kind of hiding, following the logic that visibility is good (i.e., wearing the pump on the outside makes us legible, shows the limits of clothes designed for bodies without peripherals, disrupts conventional, hetero feminine gender presentation) and hiding is, well, hiding, with its affective companions: shame, fear, desire for normalcy, willingness to pass.

But visibility is only one tactic among others, and hiding the pump can also be a radical act – especially if it facilitates feeling-good-while-diabetic (for example: the best act in my burlesque repertoire hinges on repurposing a strap-on harness as an under-dress pump-holder; most of the time, my solution to the dress-problem is a jury-rigged system involving a black garter with small cosmetics pouch from Benefit, bra straps, and safety pins to keep things from sliding down my leg – unless I’m already wearing a garter belt). Of course, in the case of hiding or disguising one’s pump, feeling good can also mean feeling closer to a conventional femininity and mythic norm. I don’t want to elide that possibility, but I also return to the reality of living with chronic illness: that we live in a space of contradiction, that we work with what we have & do what we need to do to claim our (sick, cyborg, incurable) bodies as desirable. In my ideal world – one I suspect Floeh wants, too – we’ll recognize that transformation can (and should) mean more than transforming the pump, or the wearer’s relation to it, to align more closely with a dominant, normate feminine ideal. Creating, enabling, accommodating, and celebrating a multitude of diabetic, cyborg embodiments — and advocating for wider access to the pump (with all of its troubling potential) for those who are uninsured and can’t afford the $6000 price tag — these are the kinds of social transformations that need to happen in conjunction with personal ones.

BBC News – Mental health research is ‘incredibly underfunded’

Only 5% of medical research in the UK is into mental health, despite 15% of disability resulting from disease being due to mental illness.  Last week, one of the major research funders, the Medical Research Council, published one of the most up to date reviews of the strengths and challenges of mental health research in the UK. It not only showed that the research that does get funded is world-class but that the UK is well-placed to lead the way in this area. The review concludes that there are several opportunities to fund more research in the UK that would help accelerate progress in developing new treatments, or lead to better ways of preventing mental illness in the first place.

7 News Denver – Is Xcel’s Tiered Rate Program A Surcharge On Disability?

Xcel Energy’s new tiered-rate program [for electricity] began Tuesday. Customers whose lives depend on electricity aren’t given an exception. Xcel users who need electricity 24 hours a day to power oxygen tanks or ventilators have to pay the same usage costs as someone who wastefully keeps on their air conditioning.”That’s what the problem is, it’s basically a surcharge for disability,” said Julie Reiskin, executive director of Colorado Cross Disability Coalition.Reiskin told 7NEWS her organization was never notified by the Public Utilities Commission prior to the tiered-rate system decision. The PUC oversees Xcel.”I was shocked we did not know about it,” said Reiskin. “It’s disturbing that the PUC saw fit to get input from Xcel, but not from the people who are directly affected by this.”

A Happiness That Forgets Nothing – You know what? I take back that shit about not hating people.

SO. My brother—my clinically depressed brother—was met by police today. You know why? Because he mentioned to his friends that he had suicidal feelings. So what did they do?
CALLING THE POLICE, TELLING THEM WHERE HE WORKS, AND HAVING HIM HOUNDED BY THEM ABOUT HIS PERSONAL FEELINGS IN FRONT OF HIS COLLEAGUES.
I am in tears right now. Enraged tears.
My brother has a mental illness. But he is still an autonomous, competent fucking person. He can make his own goddamned decisions without alleged friends having  him hunted down like a fucking criminal.

[and finally, a mystery in which I ask for your assistance! I have seen several blog mentions of this thing – product? service? – called ‘Buddy’ that has a contract with the NHS and is supposed to help people with disabilities and I cannot understand it! Perhaps you can help?]

Buddy is a post-digital social care service that seeks to improve the well-being of people living with long term conditions, and at the same time, reduce the cost of service provision. At the heart of Buddy is a social media radio which lets users broadcast from a physical device, to a range of social media platforms. By using social networks, Buddy extends the community of carers around an individual beyond healthcare professionals, to friends, families and peers. Our idea is to decentralise and socialise care, creating a more people-powered service, where friends and families are working alongside professionals to support individuals, in real time. Co-production is the jargon.

Where About Us But Without Us Leads

On 1 June 2010, E. Fuller Torrey MD wrote an op-ed column for the New York Times, “Make Kendra’s Law Permanent.” Dr Torrey is the founder of the Treatment Advocacy Center (TAC), a nonprofit group whose sole purpose is to lobby states for the passage of so-called assisted outpatient treatment (AOT) laws like Kendra’s Law in New York and Laura’s Law in California. The New York law is named after Kendra Webdale, who was killed by Andrew Goldstein in 1999.

Dr Torrey and TAC will tell you Mr Goldstein had untreated schizophrenia. They’ll tell you people like him are dangerous, they’ll tell you people like Mr Goldstein are often so sick they don’t understand they’re ill and need treatment, and they’ll tell you they know best. They won’t tell you that Mr Goldstein had been seeking treatment desperately and been turned away repeatedly.1 Continue reading Where About Us But Without Us Leads

Military Docs Treat Pain in New Ways and Shame in All the Old Ways

Gentle readers! I know! I am going to worsen my hernia by reading this stuff every day! I can’t help myself! It’s like tearing myself away from a Star Wars Marathon and a free case of Guinness and Harp on New Years Eve Back when I was child free and in college! Did you ever hear about that drinking game?

Because what I really need right now is more news pounding home just how EEEEEVIIIIL drugs are and how in danger some of us are of becoming dependent on them!

Especially, WOES! Those poor servicemembers, because they would never ever have a reason to use them. Not with an almost decade of war going on in two countries and the highest rate of PTSD, suicide, TBI, and other things we have ever seen in our troops before.

Now, let me slow down for a moment, because there are some really good things going on here. This nerve blocking thing sounds pretty awesome, but I am not a medical professional of any type unless you were going by the number of dram bottles I have on hand. While I have a lot of not-so-nice things to say about the already “pins and needles” feelings in my hands and feet, I will take that in other parts of my body over what I deal with now thats-for-damned-sure. But the juxtaposition of a new therapy with the whole “drugs are bad, mmmm’kay” meme is wearing on my last pain free nerve. The shaming of opiate use is tired and older than my favorite period underwear.

As more troops return from the battlefield with chronic pain, the military has seen a spike in the number of prescriptions for opiate painkillers. More troubling, abuse of painkillers is on the rise: About 22 percent of soldiers admitted misusing prescribed drugs, mostly painkillers, in a 12-month period, according to the results of a Pentagon survey released this year.

So, how did their magical survey define “misusing”? Taking more than prescribed? One more? Two more? Because you were in MORE pain than that prescribed amount of pain managed and you were having trouble getting an appointment with your PCM to get the dosage adjusted or any other treatment? Anything beyond precisely what is on the label is “misusing” a prescription. The military has an entire month devoted to prescription drug abuse awareness…but what they don’t do much to address is the underlying need that might cause servicemembers to resort to such a thing; the fact that they might be in pain and they might not have doctors paying attention or being able to pay enough attention to them or their pain.

At the VA hospital in Tampa, all patients taking painkillers are incrementally tapered off them, Clark said.

Because chronic pain never completely goes away, the hospital’s staff emphasizes physical rehabilitation to strengthen muscles and joints near the pain source. When the injury involves the brain — as in PTSD and mild TBIs — the focus is on treating symptoms that could exacerbate pain.

“Pain may make it more difficult to treat those issues,” Clark said, because “all these things interact.”

But what about the remaining pain? The article never goes on to address what is done for that remaining chronic pain. You know, the pain that never goes away. Because we know that just sucking it up doesn’t work in patients who have chronic pain, and if all patients on painkillers are taken off of them over time…well then, what the hell is actually being done?

This new treatment sounds great for the people to whom it is available, and for the people for whom it will work, but let’s not jump ahead of ourselves and pat ourselves on the backs pretending that this is some magical solution that has suddenly rid us of the need for those nasty opiates or narcotics that are JUST. SO. BAD. FOR. EVERYONE. (You fucking addicts! I mean, c’mon, you were all thinking it!) (Right?) Dr. White is one of only six doctors who do what he does, and the article doesn’t say that the others offer his fancy treatment, nor does the article make any mention of how many civilian specialists are working on this treatment.

I worry that the VA and other military treatment facilities will look at this as a sign that they should be able to deny more patients painkillers. Progress will mean exactly nothing if it sacrifices patient care or hinders the quality of life of patients in chronic pain and with life-long illness and injury. While this article correctly talks about how chronic pain is processed differently by the brain not every uniformed doctor and military medical professional subscribes to that theory, and what the military doesn’t need right now is more doctors, medical professionals, or hospitals bragging about how all of their patients are off those evil, bad, no good drugs without offering them real help.

Recommended Reading for June 1, 2010

fiction_theory (LJ): The internet IS real life

The problem with impeaching someone’s anti-racism based on attendance at a specific march or even public rallies and protests in general is that it assumes that a) attending such events is a more real, valid, and important means of expressing anti-racism than any other means, specifically online and b) that attendance is a feasible option for everyone.

Marching at a rally or attending a protest is all well and good, but it’s not something that is an option for everyone. It’s quite ablist to ask such a question as though the privilege of being able to attend excludes the antiracist work of those who use other venues.

Mattilda at Nobody Passes: Closer

Somewhere between sleep and awake, a new day and last night and tomorrow, like they’re all in a circle around me but I’m somewhere in bed where I can almost read the sentences except they blur away from me, and I keep thinking maybe sleep, maybe this is more sleep except I don’t know if I want more sleep.

thefourthvine (DW): [Meta]: The Audience

I will not bring up my disability, because I don’t talk about it here, except to say that if that part of me appears in a story, it will be as either a clever gimmick (and a chance for a main character to grow as a person) or a sob story (and a chance for a main character to grow as a person). (No, there will never be a main character just like me. Most of the time I think that’s normal, and then I look at, say, SF and think standard-issue straight white guys must have a whole different experience on this issue. How weird would it be, to have basically all mainstream media written for you like that?)

Ian Sample (at The Guardian online): Bone marrow transplants cure mental illness — in mice

The team, led by a Nobel prizewinning geneticist, found that experimental transplants in mice cured them of a disorder in which they groom themselves so excessively they develop bare patches of skin. The condition is similar to a disorder in which people pull their hair out, called trichotillomania.

lustwithwings at sexgenderbody: Do I Owe Everything I am to The Internet?

Despite their lack of a body, my friends are still quite active in the world of Social Networking which acts on the physical world in much the same way things on our mind do. The contents of the Internet affect the physical world through many of the same processes as the contents of a mind, yet the contents of the Internet as a public mind can affect many more minds, and many more bodies than a private mind.