Robert Latimer denied parole

Yesterday, a Canadian parole board in a prison near Victoria denied day parole to Robert Latimer. Latimer is the Saskatchewan farmer serving a life sentence for the second-degree murder of his 12-year-old disabled daughter back in 1993.

Some facts: Tracy Latimer acquired cerebral palsy from oxygen deprivation at birth. She was unable to walk or talk and had seizures every day, but she could smile, laugh and cry. She went to school each day on a bus, she could communicate likes and dislikes. She recognized the people she loved. Tracy had several surgeries and was scheduled for a fourth on the day of her death. (The back surgery she had to correct scoliosis and the complication afterward of a steel bar migrating in her hip sound identical to my own Harrington rod surgery experiences.)

On October 24, 1993, Robert Latimer placed his daughter, Tracy, in the cab of his pickup truck, connected a hose to the exhaust, ran the hose in the vehicle's window and gassed his daughter to death. He hid the evidence and lied about her death until an autopsy revealed foul play. Then he confessed.

But he has never expressed remorse, which is why he was denied parole:

The parole board decided the 54-year-old Saskatchewan farmer had not developed any insight into his crime. Latimer insisted during his parole hearing Wednesday that killing Tracy was the right thing to do.

He remained unapologetic and angry at the legal system.

"The laws are not as important as Tracy was," he said.

"I still feel don't feel guilty because I still feel it was the best thing to do."

While there's always been a frightening and enraging degree of support for Latimer's actions (which, interestingly, played out while Susan Smith was simultaneously being castigated for the murder of her nondisabled children in the U.S.), much of the fervor has been about the mandatory sentencing that required him to serve at least ten years in prison. The Canadian Supreme Court overturned a lighter sentence that failed to follow sentencing guidelines. He's currently spent seven years in jail.

In an appeal to his conviction, Latimer contended that he "had the legal right to decide to commit suicide for his daughter by virtue of her complete lack of physical and intellectual abilities."

Grant Mitchell, a lawyer representing disability groups in relation to the case, said yesterday:

"I think it's really sad that he's still maintaining that he committed no crime ... that killing a member of his family was a private matter that the public had no business getting involved in. And I think it's particularly concerning that when he was asked by the Parole Board whether he would do the same thing if another member of his family were in distress, he said he wasn't sure what he would do."

I agree with Mitchell. More importantly, I agree with the guilty verdict that holds Latimer accountable for murdering his daughter. I am less certain how much time in prison is appropriate, but since Latimer reportedly wished to use his day parole to spend time furthering the cause of euthanasia, I'm content that he remains in jail.

Cross-posted at Alas, A Blog

On Ruben Navarro

If you read just one thing this week about disability in America, read this.

I briefly mentioned Navarro's case here but the above link has important and better detail than the news story I linked to.

More on Emilio

I posted about baby Emilio Gonzales on Wednesday, but here's a petition to sign for him. It does appear that public attention and involvement has had an effect so far.

Emilio has not gotten much national mainstream media attention so far, but for further info on the Texas futile care law, which was signed into law by then-Governor George W. Bush, you can check out the ever-dubious Wiki as a starting point. It lists several cases that have come under the Texas law since it was signed: Sun Hudson, Tirhas Habtegiris, Andrea Clark, and Baby Emilio.

Sun was the infant of a mentally ill woman and the first American child to be refused medical care against his parent's wishes. Habtegiris was an African immigrant woman who couldn't pay her medical bills, and Clark was a 54-year-old heart patient.

It's fairly clear that this law is principally applied to people without resources, since there have been no cases of people dying under this law who were, for example, adult white males or terminally ill people who can better pay their bills or access adequate insurance. This is euthanasia for the poor.

Little Emilio and the Texas Futile Care Law

The AP story here:

A dying toddler facing removal of his life support system received a reprieve Tuesday when hospital officials agreed to keep his breathing device running until at least April 10.

The decision came hours after attorneys for Emilio Gonzales, a 16-month-old who doctors believe has Leigh's disease, filed a temporary restraining order request to prevent removal of his life support. Gonzales, who has been at Children's Hospital in Austin since December, was scheduled to be taken off life support Friday.

The deadline extension also came hours after Catarina Gonzales, Emilio's mother, appeared at the Capitol with lawmakers who support a bill that would prohibit hospitals from stopping life-sustaining treatment while a family pursues a transfer or other care.

Under the current law, doctors are obligated to give only 10 days notice before withdrawing treatment when further care is deemed medically futile, even over the wishes of the patient and family.

From the letter FRIDA (Feminist Response in Disability Activism) wrote to Texas Governor Rick Perry:

.... It is not the severity of Emilio's illness that is at issue here. Rather, we are opposed to the state-sanctioned removal of Emilio's life support and the violation of his human and civil rights and protections. We also join his mother, Catarina Gonzales, in her condemnation of doctors "godlike position," and believe her fight for the right of Emilio to live is life-sustaining and life-affirmative. Counter to the perspective of doctors, we do not believe it is undignifying to be on life support....

Compare Texas' law and the hospital's decision to this recent NYT story on hospice for infants and the comfort and closure it provides for family.

Euthanasia in Oregon

David McDonald at DAWG Oregon (Disability Activists Work Group Oregon) had a friend named Tracey. He knew her for seven years and worked directly with her at a day program she attended for adults with developmental disabilities. David says she was "fiesty" and uncompromising, a loner, but a "tough chick."

Tracey was small. At age 44, she was just 4' 8" and 80 pounds in her wheelchair. She wasn't very communicative -- "non-verbal" is a more clinical term for it -- but as one of three caregivers for Tracey David spent five years working closely with her, helping her eat, changing her when needed, taking her for rides in his truck where they shared long one-sided verbal exchanges. David says she was quiet but had a big spirit. He knew her and called her friend.

In April of last year she was diagnosed with stage 3 colon cancer. David tells much of the story at his blog:

She had a profound developmental disability and was non-verbal. In order for critical health care decisions to be made on her behalf, she needed representatives who knew and cared about her to gather and interpret medical information and weigh all her options.

An Advocacy Team was assembled including myself, two other staff members from her day program (who knew her well), and her Individual Service Plan (ISP) team. This consisted of a management staff representative of the day program provider (who saw her a few times a year), the owner of her foster home (who supervised her direct caregiver) and a county case manager (who was assigned my friend a few months earlier, and didn’t know her). A close friend of the day program representative was brought on board to act as health care representative (who didn’t know my friend prior to her diagnosis).

That makes seven people, if I count correctly. David indicates that they got off to a fairly sensible start and yet:

We all met and decided that the case manager would look into what was covered under her health plan, the health care representative would get the medical record and a 2nd opinion. She committed to providing these documents to the team as soon as she got them. I said that I would look into treatment options. Without any of this being accomplished, other than the information I shared about diet and exercise being critical, she was placed in hospice about two weeks later.

What should have been a committee convening to manage Tracey's continuing health care during a critical time apparently became a select and fractured mini-ethics committee that determined Tracey's life wasn't worth saving. This decision wasn't initially made formally, it seems, but through the actions of a few or even through the very act of creating the "Advocacy Team" to make decisions appear legitimate.

David says (italics mine):

From the beginning I insisted that in order to responsibly represent my friend in making decisions about her health care, we needed to see the medical record, the 2nd opinion, and make sure we all knew what her options were. The rest of the ISP team was more interested in allowing her to die without any medical “interference.” In fact, in early June, without access to any medical record, I was asked by the day program representative to sign a form that would indicate that I agreed to refusing treatment – I declined.

I complained of medical neglect for months while my friend received no treatment. While I was researching diet and exercise, part of the team enrolled her in hospice and cancelled her home health aide; the case manager claimed she had no idea how that happened. While I was complaining of a service plan that didn’t address supports for her condition, the case manager scheduled a meeting to discuss a burial plan.

David and another member of the Advocacy Team complained and were subsequently quietly excluded from future decision-making. The health care rep on the team took a 10-day vacation to Greece while Tracey waited in limbo with her medical records not even available for her team to read. David contacted Oregon's Protection and Advocacy agency for help on the day she was enroled in hospice. Instead of consulting the hospice program before a client is committed to it, Tracey's team consulted with hospice only after she'd been enrolled in the program for two weeks.

David's objections to this complete failure to address his friend's immediate medical needs resulted in him being labelled "disruptive" and "ancillary," and against Oregon laws about changing the advocacy team while critical care decisions are needed, attempts were made to kick him off the team. Lawyers got involved and communication became even more complicated.

Meanwhile, Tracey was bounced out of hospice in July because she was not "homebound." She'd been attending the day program all this time, riding the public lift to get there. Still, leaving hospice didn't mean actual treatment for her cancer.

David again (italics mine):

Finally, in early August, the medical record was made available by the Healthcare Rep. This was 4 months after her diagnosis and refusal of treatment by the other ISP team members. No 2nd opinion was included. What the Health Care Representative had been calling a 2nd opinion was an oncology consultation from a second doctor during the same hospital visit. I believe that no 2nd opinion was ever done. The doctor said that chemotherapy is the usual course of treatment and there were concerns about her communication and side effects. I discovered that the case manager and the day program representative had a meeting at the hospital with a social worker and decided then that she was incapable of chemotherapy. At the initial meeting back in early April, this was presented as a fact given to them by the doctors. I found that a hospice consultation was given, along with an in inaccurate reference to her being bed-bound and an opinion about her quality of life and disposition. There was no prognosis of 6 months as they had claimed. I also discovered that she had symptoms involving her intake and weight loss fifteen months earlier. In March an endoscopy had been recommended but wasn’t done.

Basically, other members of the team had made care decisions prior to the actual team's first meeting, and had represented those decisions to David and the rest of the team as doctors' advice. Inaccuracies about her abilities and life expectancy were stated, and then Tracey's quality of life was determined from that.

David and his wife tried to get guardianship of Tracey when it was clear that she was in danger of being given some random state guardian who did not know her, and David feared, would sign end-of-life documents like a DNR (do not resuscitate order). Tracey had had no treatment at all for her cancer, but David was not ready to give up:

I had also called protective services to report possible medical neglect, but was told they wouldn’t investigate as long as the Protection and Advocacy agency was already involved. I now feel that the one regrettable mistake I made through this whole thing was in contacting the Protection and Advocacy agency, believing that she needed a lawyer. They never gave a clear answer as to whether or not they would even represent her. In the face of reams of evidence forwarded their way, the P&A did nothing that I am aware of. A well-documented trail of deceit, betrayal, delay and cover up of information continued until I finally left the ISP team, disgusted, in September.

She continued in her day program until late November, when it was announced that the cancer had spread and she was back in hospice. At 10:00 A.M. PST on December 14, 2006 my friend gave in to “pain killers” prescribed while she was on hospice care. I believe my friend was euthanized. I believe this was because she was unable to say “yes” or “no”.

David tells me, "I visited her at home, leaving 15 minutes before she died. As I was leaving I kissed her on the forehead and told her 'your death will not be in vain.' It won't. It can't be."

On his blog, David writes, "In life she was easy to overlook, but the way she died will not be."

For that to be true, the rest of us have to care. We have to be bothered enough by the fact that a critical medical diagnosis for a woman who could not speak for herself was met with a team of people dedicated to abandoning her instead of seeing what appropriate medical care might have done to treat her.

We have to picture Tracey. (Or picture me, if you like. There were about six months when I was mostly "nonverbal," and communicated by writing notes people sometimes chose to ignore. There was a doctor at rehab that my parents had to talk to sternly several times before she began taking the time to read what I wrote about my medical care while she stood at my bedside.)

Tracey's story is a scenario that Ashley X's parents feared for their child, and whether or not you agree with the medical treatments they inflicted on Ashley (I certainly don't), concerns that she would meet a fate like Tracey's at the hands of some committee that did not have her best interests at heart are a primary justification for those surgical alterations.

For Tracey's fate to not be overlooked, we have to ensure that the structure of advocacy and care already in place for the most vulnerable of people is actually accountable for serving them fairly and well. David tells me he has the documentation showing all that happened with Tracey's ISP Team. The Advocacy Team he had been a part of was nonfunctional about three weeks after this began. It just needs to be looked at and Tracey's fate taken seriously. That's the job of the Oregon Advocacy Center. This is their contact info:

Oregon Advocacy Center
620 SW 5th Avenue, 5th Floor
Portland, Oregon, 97204-1428
503-243-2081 (Voice)
1-800-452-1694 (Voice)
503-323-9161 (TTY)
1-800-556-5351 (TTY)

Euthanasia for the mentally ill

Article here.

Slippery slope? Nah.

Holocaust memorial day

Today is the 62nd anniversary of the liberation of the Auschwitz death camp of WWII and an international day of remembrance of the Holocaust. At a ceremony in Newcastle, UK, where the six million Jews who were murdered were remembered:

Chief Rabbi Sir Jonathan Sacks called on people to remember the other victims of the Holocaust, including gay people, gypsies, the mentally handicapped and the physically disabled.

He emphasised this year's theme of The Dignity of Difference, saying: "At the heart of evil is dislike of the unlike, the fear of difference, the belief that because you are not like me you are a threat to me. Fear becomes hate and hate begets violence and violence turns to murder and murder becomes the attempted annihilation of a whole group.

"The great human challenge is to honour what we have in common while respecting what makes us different because if we had nothing in common we would be unable to communicate, and if we had everything in common we would have nothing to say. If we do not learn the lessons of the past then I fear for our future."

Kevorkian paroled

After serving eight years of a 10-to-20-year sentence for second-degree murder, Jack Kevorkian is expected to be free on June 1, 2007. Although he is requesting an expedited release because of allegedly poor health, it appears that Michigan Gov. Jennifer Granholm will not grant that wish. A further reminder of his past:

Kevorkian was convicted in 1999 of second-degree murder in the Sept. 17, 1998, death of Thomas Youk, 52, of Waterford, a victim of the debilitating Lou Gehrig's disease.

The death was different from others in two ways. First, it was videotaped and aired on the CBS show "60 Minutes." Second, Youk was unable to press the button to deliver a fatal dose of drugs, and the tape showed Kevorkian doing it for him, which provided prosecutors with evidence that Kevorkian had stepped past the assisted-suicide line.

Youk was one of more than 130 people Kevorkian assisted in dying. A number of the people Kevorkian "helped" were determined to not be terminally ill even though that is the condition much of the public considers part of their moral reasoning for support of physician-assisted suicide.

The disability rights organization Not Dead Yet released the following statement on Thursday, December 14:

Disability activists were disappointed but not surprised by the announcement on December 13th 2006 that Jack Kevorkian will be paroled on June 1, 2007. Reflecting on years of experience with the euthanasia debate and with Kevorkian himself, the following predictions were made by members of Not Dead Yet, a national disability rights group that organizes opposition to legalized euthanasia, assisted suicide and other types of medical killings:

1. We expect that Kevorkian will show near-miraculous “recovery” from his alleged grave medical problems. He has announced that he plans to speak and write. We expect him to suddenly show enough health and energy to make numerous media appearances and speaking engagements. We could be wrong, but we were suspicious his health problems were greatly exaggerated when his lawyer filed appeals for four years in a row claiming Kevorkian was essentially on the brink of death.

2. Pro-euthanasia advocates will be scrambling to figure out how to maintain control of the debate over euthanasia and assisted suicide. Over the past few years, groups such as the Hemlock Society have reformed and sanitized their images – even changing their name. They’ve worked hard to maintain the fiction that the goals of the euthanasia movement in the U.S. are limited to legalization of assisted suicide for people who are close to death from a terminal illness, despite the fact that Hemlock provided $40,000 for Kevorkian’s legal defense. With Kevorkian once again gaining prominence in the debate, the public will be reminded of his role as a hero to the
pro-euthanasia movement, in spite of the well documented fact that the majority of his body count consisted of people with disabilities who were not terminally ill. It’s also doubtful that Kevorkian will cooperate with the sanitized euphemisms for assisted suicide being promoted by the pro-assisted suicide activists, which will help undermine some of the very expensive public relations work they’ve engaged in over the past few years.

3. Some things are harder to predict than others. Will Kevorkian preside over any more suicides or actively kill anyone? There’s no way to know, since the only rules Kevorkian cares about are his own. The fact that he’s made a promise doesn’t mean anything – he’s made promises to courts before and broken them.

4. Mike Wallace or Barbara Walters can be expected to do a very sympathetic and biased interview with Kevorkian. They’ll downplay his history of helping non-terminally ill disabled people commit suicide and portray him as some kind of martyr. They won’t mention his advocacy of lethal experimentation on death row prisoners or disabled infants at all.

Whatever happens, Not Dead Yet and the disability community will be paying attention and responding to developments. We witnessed the long awaited justice that put him in jail. We won’t forget the struggling disabled people he preyed upon. And we won’t be silent.

From the NDY archives, some information on the now-defunct pro-euthanasia group Hemlock Society.

Other links:

Why assisted suicide is a feminist issue by Barbara Waxman Fiduccia

A 2001 Ragged Edge article by NDY's Stephen Drake about Kervorkian

Recent Detroit Free Press article on the pro-euthanasia movement's response to Kevorkian's parole