Category Archives: justice

ADAPT Protests partially lock-down White House! Media Yawns, Changes Subject

I spent most of my weekend pretty much glued to Twitter following ADAPT’s latest action in Washington, DC and wondering where the media was, especially after a huge group of wheelchair users blockaded one of the White House gates and 16 people were arrested. I actually thought that the White House security arresting a group of people with disabilities would surely be the sort of thing that the media would pick up on.

Foolish me! Just like with the Arnieville protests that s.e. wrote about last week, the media is basically ignoring this four-day-long protest in Washington in favour of more important things. Despite repeated hunts by me and several other people, the only mention of the protest, “partial White House lockdown”, arrests, and march is this CNN report, which only quotes White House staff and the ADAPT webpage. Apparently CNN couldn’t even find someone from ADAPT to quote directly. (Also, the photos of the event that ADAPT have posted make it clear that CNN’s report is factually inaccurate.)

[If you would like to read NationalADAPT’s tweets, a good place to start is their September 18th tweet, and just keep going from there. Their timeline includes a variety of photos taken of the event, and also will point you towards other tweeters that were there.]

ADAPT has been protesting at the White House at least once a year (sometimes twice a year) since 1997, and has been holding protests in other cities across the US for 25 years. The focus of their protests for the last 11 years has been the Olmstead Decision and the Community Choice Act.

Eleven years ago, in the Olmstead decision, the Supreme Court said that Americans with disabilities have the right to live in the most integrated setting. Yet today, states are responding to budget shortfalls by drastically cutting home and community-based services. These draconian cuts are forcing seniors and people with disabilities into nursing facilities and other institutional settings because they don’t have the services they need to remain independent.

On Sunday, ADAPT held a funeral, complete with casket, to both mourn and bring attention to the number of people with disabilities who have died in nursing homes around the country while fighting to get out of them. Monday involved marching directly on the White House. While CNN reports that 9 people handcuffed themselves to the White House gates, the ADAPT photos and Reports make it clear that far more than 9 people were involved in this action.

The Park Police had closed the sidewalk and street in front of the White House around 10 in the morning as ADAPT approached. When the police used an SUV to block ADAPT and the sidewalk, the bulk of ADAPT charged into the intersection of 15th and G Streets stopping traffic completely. The police had believed they had successfully stopped the line of activists when suddenly all the traffic was stopped and the intersection was packed with activists.

“The people they thought were meek or expendable,” said Jennifer McPhail about the police force, “were the people who had taken their power.”

While ADAPT’s actions continue today across Washington, DC, members who are required to attend court this morning after being arrested have been illegally challenged at the court to produce documentation for their service animals, and need to bring attention to ADA violations to the very people one would expect to be enforcing the ADA.

When a local Washington paper was challenged on their decision not to report anything about the ADAPT protests, their response was first that they don’t cover national protests and then, when it was pointed out this was also a local protest, that it was a matter of debate, and there were protests every day in DC. Other media sources haven’t responded to questions about their lack of coverage.

I do understand this, to a point. Certainly I’ve attended protests that have received very little media coverage, and most of that in either local papers or in grass roots news organizations. However, at what point do we start to seriously question why multi-day – or, in the case of Arnieville, multi-week – protests by people with disabilities are getting ignored? The ADAPT actions have decades of history, and touch on issues that are hot-button topics in the US right now, such as health care, funding for social programs, and the standard of living.

And yet, still, despite everything: we protest, and are ignored.

Musings: Is Existing as a PWD a form of Free Speech?

These are some things I’ve been thinking about, but haven’t yet figured out where this train of thought is leading, or what it might connect to, or what conclusions I might end up with. I’m writing this to see if virtually talking it out can help me think through it further, or hoping it will spark some ideas or brilliance in one of you! This is not meant to be an authoritative statement on these issues and there may be glaring issues I’m overlooking! I’m just hoping to have a good discussion about it.

Recently, the federal circuit court in California heard a case about whether the city of Hermosa Beach could ban tattoo shops entirely. The plaintiff – a man who wanted to open a tattoo shop in the city – argued that the ban was an impermissible  restriction of his free speech rights. The court wrote a long decision (pdf) considering not whether having a tattoo was something protected by the First Amendment, but whether the actual act of tattooing someone was conduct with sufficient expressive content to be considered as speech. So the court was thinking about whether the act of giving someone a tattoo counts as speech – if the tattoo artist is the equivalent of a painter or a photographer and adding artistic judgment and content to the representation, or if they are more like a computer printer printing out text or images designed by someone else.

This meant the court spent a lot of time discussing the idea of “expressive conduct” – behavior that isn’t actually “speech” in that the person is not speaking words, but is behaving in a way that communicates a message or idea and so is protected the same way that speech is. In the United States, the Supreme Court has already considered a whole bunch of activities and determined that they should be protected the same way that speech is. For example, burning the United States flag, wearing a black armband to protest the Vietnam War, and nude dancing are all activities that aren’t directly speech, but convey a statement or message and so are protected the same way that speech is.

I started thinking about the idea of “expressive conduct” – behavior that conveys a message or statement – and was immediately struck by how existence as a person with a disability could be seen as expressive conduct. Using a wheelchair or cane or braces while out in public seems to me to express a statement: “I am a person with a disability, I exist, I share public space with you.” This is, as we’ve discussed here at FWD and many others have expressed, a radical statement, a powerful message. To me, it seems equivalent to the message expressed by wearing a black armband to protest a war – it is a political statement of resistance.

The law of expressive conduct recognizes that not every instance of the behavior is communicating an expressive message. If, for example, I had mini American flags as part of a table decoration and one fell into a candle and started burning while I wasn’t paying attention, that flag burning would not be sending the same message as intentionally burning a flag at an anti-war demonstration. My accidental flag burning would not be sending a message and so would not be protected as speech. Similarly, a PWD alone in their apartment likely isn’t sending any message or statement with the mere fact of their existence – they might be typing or painting or speaking and sending a message that way, but not simply by existing. So PWDs wouldn’t automatically “become” speech – only when their existence communicates a message.

I’m not entirely sure where that gets us. In First Amendment law, when conduct is considered speech because of its expressive content, it is protected by the First Amendment, which means that the government cannot restrict it without passing certain protective tests. So theoretically, arguing that disability is a form of speech would let PWDs argue that governmental restrictions on their presence are in fact restrictions on speech. But since the First Amendment only protects speech from restriction by the government, not from private businesses or in private life, I’m not sure that would add any protections that the Americans with Disabilities Act doesn’t already provide. So I’m not sure this analogy would be helpful in extending the existing legal rights of PWD.

I’m also unsure how people with invisible illnesses (like myself) fit into this analysis. My being in public does not automatically communicate to people that I exist as a PWD, because my disability status is not apparent from looking at me. So I don’t start communicating this message until I affirmatively disclose or mark my disability status.

I also wonder if this forcibly ascribes expression or speech to PWDs who do not think they are or want to express that radical message.

I don’t really have a strong conclusion to any of this – I’m still rolling it around in my head to see what if anything it turns into. But I like the idea of acknowledging that when PWDs with visible disabilities are engaged in sending a message as powerful as burning a flag.

What do you think? It’s ok if you don’t have a clear position one way or the other but just have thoughts or reactions!

Betty Anne Gagnon and Murder Most Foul

Content note: This post includes discussions of the murder and abuse of people with disabilities.

Betty Anne Gagnon was 48 years old when she was found curled up in the front seat of a pickup truck in the parking lot of a petrol station near Edmonton, Canada, in November 2009. Her face was heavily bruised and her body bore clear evidence of abuse.

She was dead. The coroner determined that blunt force trauma to the head was the likely cause of death. That was, in the literal sense, the cause of death, but what actually caused her death was ableism.

Betty had developmental disabilities. For 14 years, she lived independently with a caregiver in Calgary, but later moved in with her sister and brother-in-law. During the almost five year time period before her death, she was confined in a cage made of chicken wire, and forced to sleep in a tent smeared with her own feces. Or locked in a dog run in the yard. Or in a decommissioned school bus. Her ‘caregivers’ openly admitted this at the inquest into her death, where they described leaving her in the unheated bus with no toilet facilities, and they talked about the events in the hours before she was left to die in a parking lot, about how she was cold and struggled to breathe. Oh, but they called emergency services for help after they dumped her.

They are being charged with manslaughter, ‘unlawful’ confinement, and assault. I understand how the law works, and how the statutes are organised, and I understand why they cannot be charged with murder, but this was murder. It was murder after years of dehumanisation and abuse. It was murder. It was the complete and utter, total devaluation of human life.

Last week, a vigil was held to honour her, and to draw attention to the abuse of people with disabilities. As attendees at the vigil pointed out, caregiver abuse is common, it’s not commonly addressed, and sometimes it ends in cases like this.

The thing about cases like this is that they are endless. Every week, it seems, I am reading about another person with disabilities being murdered by ‘caregivers,’ and these cases drop off the radar very quickly, but I remember them. We remember them. We also remember the narrative that surrounds most of these cases, where we are reminded that caring for people with disabilities is such a burden and there must have been circumstances involved that we don’t know about, because how could we, it’s so hard to be a caregiver.

Of course, none of us are caregivers. It’s either/or, right? You are either a person with disabilities, or you are a caregiver.

I always thought, personally, that it’s pretty hard to dehumanise people, but apparently the media has no problem doing that. Very rarely do cases like this stress that there was a person involved, a human being, who is now dead. Dead because of social attitudes about the value of disabled lives, dead because of narratives reinforcing latitude in circumstances, dead because no one reported the abuse or because if someone did, the report wasn’t taken seriously. Dead because, sometimes, the media treats murderous ‘caregivers’ like misunderstood heroes.

It is sickening, and I mean that in a physical sense, to read article after article about people killing people like me, and getting away with it. And it is enraging to see how little coverage these cases get, a throwaway that happened to pop up when I happened to look at the screen, and would have missed otherwise. How many other devalued lives have been snuffed out without any awareness on the media’s part at all?

Betty Anne Gagnon was a human being. She had feelings, memories, experiences, and life. And that was taken from her because of her disabilities, because people determined that she wasn’t a person, and therefore didn’t need even the minimum standard of care you would give to a human being: A bed, a warm room, food, a place to use the toilet. She was locked up in an outdoor dog run in Alberta in the winter.

The media reported on the vigil, but didn’t really provide hard statistical information about the abuse and murder of people with disabilities, beyond making vague references to the fact that we are more likely to experience abuse. Many of those articles were specifically framed to focus on caregivers, not actual people with disabilities. Caregivers to ‘speak for those who can’t,’ reminding us, yet again, that those of us who cannot communicate in a way that satisfies others are deemed ‘silent.’

When we talk about ableism, about social attitudes, this is what we are talking about. We are talking about the fact that Betty’s life was deemed worthless because of her disabilities, and that every mainstream narrative reinforced that, right down to the complete lack of interest in her death on the part of anyone other than a handful of disability rights activists.

I remember the Bettys of this world, because so few people will.

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.

Quick Hit: Parents of Disabled Children

This is gonna be short ’cause I hurt and it’s hard to think and type and all that shit what’s good for writing.

Another parent of disabled children has killed ou children. Ou regrets having done it and immediately notified police of ou actions. Responses of shock and horror from media and across internets.

But. It doesn’t take long before there are articles like “Parents of Children With Autism: We Struggle Alone” at the Dallas Morning News. This is bog-standard parent of autistic child shit and not worth reading. (Y’all may consider yourselves warned about clicking through and especially about reading any comments that may be present.) It is easily summarised: Parents say, “Oh that was so horrible I’d never ever never even think for a moment of harming my autistic child. But…” There’s a lot of subtextual sympathy for the person who murdered ou children. Just as there always is. In the midst of all the parents-are-on-their-own there are blithe assumptions that help is available. It costs a lot of money but is available. All the accompanying photos are of apparently white people in nice homes.

Nothing we’ve not seen before.

It’s notable because I happened to come across it in the print edition of the paper and its placement there. On the front fucking page of the Sunday fucking paper. Below the fold and tucked into the bottom right corner but still. Being parents of disabled children is so hard that killing them is an option many people will sympathise with is news big enough for the front page. Of the Sunday fucking edition. This is prime newspaper real estate.

The Dallas Morning News uses it for this shit. And my wife wonders why I’m so ‘hypercritical’ of news about disabled people.

Recommended Reading for 13 August, 2010

You know, if you’re into the Gregorian calendar (also, Friday 13th! Spooky!). Why hello there, gentle reader! This is my first Recommended Reading. This is very exciting for us all. While this should be a time of celebration, be cautioned: comments sections on mainstream media sites (and it’s all MSM articles in this edition of RR!) tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

A group of people lying in a circle on the grass, hands stretching towards and touching in the middle. There are three wheelchairs scattered about nearby, and some rope on the ground. Rocks are just visible to the bottom of the shot. The photo was taken from the top of a flying fox.

Photo by Louise Dawson. From the photo’s Flickr page: ‘Participants in this Outward Bound group, with a variety of physical disabilities, had just tackled a ropes challenge course as part of a 9 day program.’ The photo was taken in November 1996.

IRIN Africa (from the UN Office for the Coordination of Humanitarian Affairs): SENEGAL: Children with disability – when stigma means abandonment. Warning for some highly unpleasant treatment of disabled children.

The shame attached to mental and neurological disorders is a strong force, said Dakar hairdresser Ibrahim Gueye, the father of a child with a severe learning disability.

“In Senegalese society it is quite difficult to have a child with a mental disorder. The prevailing belief is that it is a curse; it is difficult to get family and friends to accept such a child.”

In the District of Columbia in the USA, from the Washington Post: Independent administrator to oversee D.C. compliance in disability lawsuit:

The fight over appointing an administrator is the latest chapter in the Evans lawsuit, which was filed in 1976 over the District’s abysmal care of people with developmental disabilities.

That’s right, the case has been going for thirty-four years.

From the Ghana News Agency, 50% of Brazilian buses for persons with disabilities:

Vice President John Dramani Mahama on Wednesday announced that 50 per cent of buses expected from Brazil would be friendly to persons with disabilities.

[…]

He said the constitution of the National Council on persons with disabilities was the beginning of the educational programmes that would help to redress their challenges as public institutions noting that the transport system still lacked facilities for them.

In the UK, from the Guardian, Why the next Paralympics will be the greatest ever by Ade Adepitan, Paralympian and TV presenter.

The news that Channel 4 is going to spend millions on the London 2012 Paralympics and give it 150 hours of coverage is a landmark moment. The BBC did a fantastic job of increasing the Paralympics’ profile, but it usually ended up on BBC2 – second fiddle to the Olympics. I only found out about the Paralympics when I was 14 – before then I didn’t know it was possible for someone in a wheelchair to compete in a global sports event.

In the Canadian town of Cobourg, at Northumberland News, Electronic voting a win for disability groups:

The system ensures security by sending each registered voter a pin number by mail; that number can then be used to access the electronic ballot either online or on the telephone.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading[@]disabledfeminists[.]com.

…And At This Point, I Don’t See It Stopping Anytime Soon

Courtesy of amandaw I bring you this stellar article that once again rubs in my face how brilliantly miserable the VA is scratching the surface of realizing what is wrong with they way they even see women veterans. If you read along carefully you can even see the lightly sugar-coated condescension artfully woven in TIME writer Laura Fitzpatrick’s story. It really is a piece of work, from the dismissive way she re-counts the testimony of the “presumed” treatment of a victim survivor of sexual assault at the hands of a medical professional (because they NEVER do THAT) down to the detailed description of the very girlie attire of the staff at the impressively mostly women-run facility in Palo Alto. I crave to read the way a man’s shoes click-clack on a hospital hall’s floors in such a manner. But it is a very cliche description etched in the halls of descriptive-writing history, INORITE, so who am I to argue with the laws of good writing. I am, after all, only an amateur.

The news isn’t that the VA is failing women veterans. I’ve known that for quite some time. Really, I have. I have encountered some of the treatment described to some degrees first-hand:

I remember having to hunt around for a toilet in an ill-fitting paper gown at my own exit screening, past several other open, occupied exam rooms. I was the only woman there. They had no sanitary napkin to offer me and it was an embarrassing scene trying to find a place where I could insert a tampon. I was fighting back tears when I finally found a (presumably) unisex bathroom.

So My Dear Friend Ms. Fitzpatrick’s dismissal of Anuradha Bhagwati’s story, the one she gave as testimony before the House Committee on Veterans’ Affairs is ill-received. It isn’t too far-fetched for me to imagine the way she recounts “the ham-handed manner in which a male gynecologist, upon being told by a patient that she had been sexually assaulted, left the exam room and — presumably to beckon a female staff member — yelled down the hall, ‘We’ve got another one!'”. I can easily see the inept professionals at the inadequate facilities just stumbling over how to even grasp a way to provide basic courtesy to a patient who isn’t like them. And failing. Miserably.

The news here is that they seem to have no idea how to fix it, and no set, immediate time line in mind for seeing progress. Sure, Secretary of the VA, Eric K. Shinseki recently, at a forum at the Women in Military Service for America Memorial in Arlington, Virginia, has said that he hopes to have the VA ready to serve 100% of veterans in 25 years, but what is going to happen to this generation of women veterans who are already being ignored? To the women veterans of the wars past who have been fighting for help all along already?

Because their concerns are already being swept aside. You can already see as things like their urinary-tract issues being categorized as simple “gender differences”, because women react to the desert differently. Sure, possibly. I’ve seen this intimated a few times. People looking to explain away womanly behavior in high stress situations. Oh! They didn’t want to stop the convoy! Well, why is that? Maybe because we know that women are far more likely to be killed by their fellow servicemembers than by combat in combat zones that they learned defense mechanisms, as confessed to by Col. Janis Karpinski. Women tended to drink less water, as little as they thought they could get away with, to avoid using latrines or having to stop roadside alone with men out of fear of sexual assault. And it killed some of them. If you remember, though, Karpinski was even dismissed as a woman scorned because of the Abu Ghraib scandal, anyhow, so we can’t win for losing. She was just ratting out her old boss because she got in trouble.

Some of it is true, though. Most of the VA’s 144 hospitals do not have the proper facilities to even offer privacy to non-men patients, let alone provide gynecological care, or as I mentioned above, pads. The TIME article notes a hospital in Salt Lake City which announced that it delivered its first baby this past October (the article mentions that its average patient is 78 and male), but the day after the little girl’s arrival they didn’t know how much she weighed (I cringe to think how much more they couldn’t provide) because they didn’t even have an infant scale.

Women veterans are spiking in numbers. They, funnily enough, are not the same as men. That means they are not the same as the average patient, such as that the Salt Lake City hospital are used to dealing with, and their health care with be different. Even if you line up the matching parts, the treatment for heart disease and blood pressure, to my lay knowledge, is not the same. The numbers have been growing since The Great War, and surged after we had the need to call the next one World War II. It took until 1988 for the VA to start providing even limited care to women veterans.

Today, women veterans in need of help from the VA are of an average age far younger than the average male veteran (for obvious reasons) and have different needs. They are at least twice as likely than civilian women to be homeless (with only 8 facilities in all the U.S. available to help homeless women veterans with children). They are likely to be mothers when they are. Many of them returning from combat zones — yes, combat zones, why do you ask? — are coming home to families and are more likely than their male counterparts to get divorced following combat connected tours. They are really damned likely to get asked if that is their husband’s or boyfriend’s shirt they are wearing, or asked for their husband’s social by a thoughtless agent on the phone. They are the forgotten in war. Doubly so if they served in a branch of the military that isn’t on the forefront of the public’s mind as “really the military” (as slave2tehtink has said, Aircraft carriers tend to not be zipped around by civilians, yo). Extra-specially so if you had a thinkin’ job, like “nuke” or “spook”, and your Traumatic Brain Injury (TBI), Post Traumatic Stress Disorder (PTSD), or Military Sexual Trauma (MST) didn’t happen “In Country” (Iraq or Afghanistan), the only sanctioned places where these things can occur, you know.

It’s frustrating as hell. And while I don’t believe that the VA is intentionally forgetting about us, I don’t believe that they are doing everything that they can to make sure that it gets better faster.

And honestly, I don’t think writers like Ms. Fitzpatrick are helping. But maybe I am jaded and have been at this for too long. But the VA needs an overhaul, stat. Pretty words from the Secretary of the VA and promises that it will be better in a couple of decades just aren’t good enough.

Recommended Reading for August 10, 2010

Wheelchair Dancer at Feministe: On the Cover [trigger warning for discussion of violence]

Regardless of how disability plays out in Aisha’s world, the vast majority of readers of TIME live in a culture that understands disability as tragedy. As shocking. As among the worst things that can happen to you (bar death). Mainstream American culture thinks it knows disability and knows how to read it. Ms. Bieber has a history of photographing disabled bodies[. . .]But the work she does in the Real Beauty series does not come through in this photograph — perhaps because of the context and placement of the image. Here she (and or the editor) uses Aisha’s disability to trade upon the readership’s sympathies and their horror: this and other unknown kinds of disability are a direct result of the US departure from Afghanistan. This is not about Aisha; it’s about the message of the article.

Cripchick at Cripchick’s blog: tell me who i have to be to get some reciprocity?

don’t feel the way white supremacy creeps into your life and plops itself in the center?

in the last wk, white ppl have:

  • told me how to rearrange my words as to be more approachable.
  • made my need to have ppl of color time about them.
  • asked me invasive medical questions about my body.
  • thanked me over and over for teaching them about oppression.

Cara at The Curvature: Disabled Student Assaulted on School Bus; Bus Driver Watches and Doesn’t Respond [trigger warning for description and discussion of severe bullying]

Most readers here who have ever ridden a school bus will have at some point been on at least one end of bullying and harassment. Many will have at different points throughout their childhoods and adolescences acted as both bullies and victims — myself included among them. Big news stories since I stopped riding a school bus have left me with the impression that little has changed. School buses are places where bullies, harassment, and violence thrive. And as all current or past school bus passengers know, students with disabilities, particularly cognitive or intellectual disabilities, are especially vulnerable.

Daphne Merkin at the New York Times Magazine: My Life in Therapy

This imaginative position would eventually destabilize me, kicking off feelings of rage and despair that would in turn spiral down into a debilitating depression, in which I couldn’t seem to retrieve the pieces of my contemporary life. I don’t know whether this was because of the therapist’s lack of skill, some essential flaw in the psychoanalytic method or some irreparable injury done to me long ago, but the last time I engaged in this style of therapy for an extended period of time with an analyst who kept coaxing me to dredge up more and more painful, ever earlier memories, I ended up in a hospital.

William Davies King at PopMatters: In Defense of Hoarding

To be sure, a special label like compulsive hoarding seems required by many of the heart-rending cases they recount, people neck-deep in the slough of their despond, overwhelmed by more whelm than can be weighed. But sadness and dysfunction are hardly rare or new. What is new is the social imperative to ram open that front door. Bring in the wheelbarrows, the commanding case worker, and the camera—especially the camera, which enlists us all in the drive to evacuate these cloacal dwellings. Reality TV rolls up its sleeves, puts on the rubber gloves, and hoards the evidence while [authors] Frost and Steketee stand alongside the labyrinth, notepad in hand, giving that Skinnerian nod.

Vulnerability Indexes, Homelessness, and Disability

(Note: this originally appeared in a modified form on my tumblr.)

Vulnerability indexing is a new trend in homelessness services. It started in LA and NYC but is now being used a bunch of cities and localities of all sizes around the country. Instead of traditional outreach services, these projects use a “vulnerability index” survey to collect data from street-based homeless folks (rather than people in shelters, living in cars, doubled up on couches, etc). The data is then used to rank the homeless people, in order, by their “vulnerability,” or likelihood of dying within the next 12 months if they remain on the street.
That ranked vulnerability list is then used as a priority list to provide the people with services, starting with housing.

In providing housing and services, these programs use a “housing first” model, which means that unlike the vast majority of homeless housing services, individuals are NOT required to be clean of drugs/alcohol or engaged in mental health services prior to moving in. Once they move in, they’re provided with all the supportive services they want, including substance abuse treatment, mental health treatment, education and job training and placement assistance, etc.

I strongly support these programs and have been very excited to see them gaining traction in LA. (we have project 50 in downtown LA, project 30 in the San Fernando Valley, and others pending right now.) I also think these programs are of special interest from a disability perspective because of the extremely high prevalence rates of mental and physical disabilities among the long-term chronic homeless, and the way these disabilities make it difficult, if not impossible, for this group of homeless people to move towards stable permanent housing.

Here are some of the reasons I think this approach makes a lot of sense:

1. It targets the population that needs it the most, re-opens discussions about serving the chronically homeless
These projects target a subset of the homeless population – the chronically homeless. This group is defined as people who have been continuously homeless for at least a year. This is a minority of the overall homeless community (about 23% of all homeless), as most people cycle in and out of homelessness in periods of 3 months or so. The chronically homeless are generally single adults, not families, and generally have some kind of substance abuse issue and/or mental disability and/or physical disability. Most policy analysts believe that nearly every chronically homeless person has either a mental or physical disability.

This population is considered extremely difficult to serve, as lots have tried to engage with services in the past and not found it useful, so are considered “service resistant.” This is a nice way to say that most people and agencies have pretty much given up on them and don’t have any hope of bringing them into services, much less into stable housing. This is also a nice way to say that these homeless folks have correctly figured out that most homeless services aren’t appropriate or beneficial for them, so there’s little point in trying to engage with service organizations. This is partly because homeless services are not really set up for people with disabilities – getting necessary accommodations in a shelter is enormously difficult because of the already extremely limited resources available. If you have PTSD and need a door that locks in order to sleep, a shelter is not for you. If you have a service animal, shelters are not for you. If you need even a minimal level of nursing or medical care, shelters are not for you. (Not that the streets are better at accommodating disabilities.)

These chronically homeless people are, unfortunately but frankly, likely to die. the vulnerability index looks at factors that “place them at heightened risk of mortality,” including 3 or more hospitalizations or ER visits in the last year, aged 60 or above, cirrhosis of the liver or end stage renal disease, HIV+ or AIDS, or co-occurring psychiatric, substance abuse, and chronic medical conditions (tri-morbidity). When this tool has been used in communities, the most vulnerable person identified by the tool usually has all of those risk factors and has been homeless for 20+ years. Can you imagine how difficult it would be for a 62 year old man who is HIV+ and has a physical and mental disability and an active substance abuse problem to enter a shelter, especially after over 20 years of street homelessness?

Traditionally, this group of the chronically homeless is a group that people have given up on. Not just the public, but even homeless service providers. But the first iteration of this program, in the Times Square area of NYC, has produced before and after stories that are flooring. A woman who lived on the streets for 20+ years as a heroin addict is now housed and working as the concessions manager at the movie theater in Times Square. Looking at the before and after pictures seemed like she’d moved backwards in time – she looked 20 years younger. These are the people who we walk by on the street and feel like they’re beyond help and beyond hope. We just don’t think people can come back from that – and these programs are proving that assumption to be absolutely wrong.

Another benefit of focusing on the most vulnerable folks is that it communicates that same message – you are not beyond help or hope, there are programs that can provide meaningful and beneficial assistance – to the homeless community itself. If folks see that the agency promised housing to someone with a substance abuse disorder, a mental disability, and 20+ years on the street, and then delivered on that promise, they’ll be motivated to participate with the agency and trust them in a way they wouldn’t trust the shelters or outreach teams that hadn’t housed that guy in the past. These programs usually see a “tipping point” once the first few, most vulnerable, people are housed – then the rest of the community believes in the promise of potential housing and is motivated to cooperate with the service agency.

2. These programs make economic sense.
These targeted programs are usually seen as an alternative to simply ignoring the homeless and continuing to not spend city and county funds on them. Because there are not a lot of homeless services or programs targeting this group, the perception is that we are currently spending zero dollars on them, and any targeted program will be a dramatic increase in funds directed to the chronically homeless. This could not be more inaccurate. Actually, this group is consuming an astounding amount of public funds, through county health programs, police and jail funding, and public benefits such as food stamps or general relief funds. A recent study by the Economic Roundtable here in LA found that these most vulnerable folks are consuming over $8,000 in county funds PER MONTH, through multiple ER visits, jail time for quality of life infractions, and health care services received in jail. When these folks are moved into housing – even fully subsidized funding with inclusive supportive services – it’s a net savings for the government.

So this popular conception that we’re not already spending a bundle on these chronically homeless folks is simply inaccurate. We, as city and county governments, are already spending an enormous amount of county health funds, justice system funds, and social system funds on this group, with no discernible improvement in their quality of life or life expectancy. (This New Yorker article is a great discussion of how these costs can mount up for a single homeless individual.)

I know that cost savings is likely not the most important aspect of these programs for this audience, but these economic arguments are extremely powerful in persuading localities who do not understand why they would benefit from targeting funds and assistance at the chronically homeless.

3. The overall economic effects of the project help those homeless who aren’t directly targeted.
The economic benefits of these programs mean that there will likely be additional homeless service dollars available for use at other places in the homeless continuum of care – meaning that the program could generate benefits for the non-chronically homeless as well. This is much needed. Currently, in LA, it’s really hard to get into a homeless shelter. that’s because the “emergency” homeless shelters – where you’re supposed to stay for 30-90 days before moving into a “transitional” shelter – are backed up. Because all the transitional shelters are full. Because there’s no permanent housing available, so there’s nowhere to transition to from the transitional shelter. So the transitional shelter is serving as permanent housing and the emergency shelter as transitional shelter and the folks who need emergency shelter … sleep in their cars, or on the floor of a friend’s apartment. This system could benefit from some more cash to build permanent housing – money that might be available were we able to reduce the significant existing county expenditures on the chronically homeless.

4. Housing First and other harm reduction policies make sense.
Currently, a lot of housing placements require that the person moving in be clean and sober and, if they have a mental disability, be actively engaged in mental health treatment services. As you can imagine, this turns into a lot of chicken and egg problems. If you are a homeless person living in LA’s Skid Row, which is overrun with illegal drugs and alcohol, and have no money to afford rehab or treatment, you are never going to be eligible for that housing, even if you actively want to stop using. You don’t have anything to lose while living on the street – even going to jail gets you a bed and some food – so there’s absolutely no incentive to stop using. If you’re likely to die within 6 to 12 months, it’s likely that being high during the interim will be more pleasant than being sober.

If you’re placed in an apartment, though, you quickly learn that ongoing abuse is going to cause financial problems in affording the apartment and social problems in not disturbing other neighbors. There’s also an incentive – you don’t want to lose the apartment. The programs have found that people are motivated to enter treatment when receiving housing, even if it’s not a requirement of maintaining housing. There have been similar results with mental health treatment.

Even aside from the incentive effects, these Housing First programs are humane. I know a bunch of people who wouldn’t be able to get apartments if they had to show clean drug tests to get the apartment and to maintain tenancy, but they’re allowed to do that because they have money.

SO, in short: even though it sometimes feels a bit squicky to be ordering homeless folks in terms of likeliness to die and priority for housing, these programs make a lot of sense conceptually and have had amazing effects on the ground. Of the 50 most vulnerable in downtown LA, all of which had disabilities of some kind, 41 are currently in housing. I don’t see how this could have been done any other way.