Katie Jones and Deus ex machina

The story of Katie Jones has been circulating slowly on disability listservs and blogs since the December 9 article in the Chicago Tribune. FRIDA provided an early link to the story, and since then Crip Chick, Shiva, Bint, Trinity, Brownfemipower have all addressed aspects of Katie's story and the larger issues. Comments everywhere have been... illuminating.

I haven't written about this before now because these sorts of articles from the mainstream media -- this one involving children, parental control of a child's well-being, disability prejudice, personhood and consciousness, health care in the U.S., living with the aid of machines, "special needs" schooling, and "right-to-die" versus the right to not be coerced to die -- contain so much information that is either misleading, incomplete or biased that I can't think where to begin.

Katie Jones is a second-grader in Lake County, Illinois, who has severe cerebral palsy and whose parents have sent her to school with a DNR order (Do Not Resuscitate) prominently attached to the back of her wheelchair. Taking that much at face value, the implications for Katie, her parents, her young classmates and school employees are complex and profound.

Add to that some mind-boggling facts about both the case and the media coverage of it: The Tribune article portrays cerebral palsy as a terminal disease, and while I'm not well-versed on the very wide range of abilities and medical issues people with CP possess, none of the many people I have known personally have ever been about to drop dead. So that portrayal is dangerously and cruelly incomplete. The Tribune article doesn't discuss the fact that Katie apparently does communicate thoughts and feelings beyond those independently interpreted by people around her. You must dig to the caption of photo 4 at a sidebar link to even learn she is capable of expressing her feelings at will. And this, at the article's end:

Before the bus arrived, Beth Jones weaved a French braid into the school girl's long brown hair, while Allie [Katie's four-year-old sister] held up a feeding tube. A machine could do the job, but that makes group hugs difficult.

Besides, anything that beeps isn't allowed in the Jones house.

"When we took her home from the hospital, where there were so many machines, we made the no beeping rule," Beth Jones said.

The group hug part is completely untrue. I've had a feeding tube for two years now, and I can say with absolute certainty that there is nothing about attaching a thin plastic tube to the end of it and running that tube to a machine that makes it hard to hug or be physically close to people. It's actually less a problem for physical intimacy than an IV in the top of the hand would be, whether that IV is connected to a hanging bag or a machine. Feeding through the tube manually is a perfectly reasonable way to use the tube since basically this just entails using a giant syringe or holding the tube up and letting gravity allow nutrients to travel gently into the stomach, but attaching falsehood and phobia to machines that do this same task contributes to the pervasive ableist belief that people are better off dead than using medical technology for the long-term.

And the "no beeping rule"? There's the real reason for the DNR right there. Better dead than using a machine that might make some noise.

I understand machines are scary. I get that because I've needed to make my own adjustments to them and also because I see it in peoples' eyes every day. And I do understand people have different points at which they might choose not to live beyond, though I'll add that there seems to be little reflection upon or respect given to the people who live quite happily beyond those points.

I'd like to hear much much more about the Jones' "no beeping rule." Is it because Katie is terrified of the beeping? Does the beeping represent an identifiable point beyond which Katie's parents don't feel they can handle her care? Or is the beeping too public? Too intrusive? Too medical? Why is an alarm that can signal a problem that should be addressed juxtaposed against the myth that without machines Katie will die "peacefully" from choking or suffocation? Why is this type of beeping so forbidden in our technological age where cellphones and dozens of other machines chirp at each of us all day long?

It's not really the beeping, of course. And the answer to Trinity's question:

Now why is [info that Katie shares thoughts via a communication device] tucked away in the photoshoot and not right there by the article, which is written in a way that suggests she is not aware what is happening?

seems to be that it didn't seem relevant to the point of the article. Katie's consciousness and feelings were not important in an article about whether or not she lives or dies and whether or not she gets to go to school in the meantime. What her thoughts about all this might possibly be is not once pondered in the article.

Further discussion can also be found at Wrong Planet, an online forum for people with Asperger's Syndrome.

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.

Olmstead Anniversary and the "right to die"

Today, June 22, 2007, is the eighth anniversary of the Supreme Court decision in Olmstead v. LC and EW. LC and EW are Lois Curtis and Elaine Wilson, two women in Georgia who had spent most of their lives in institutions because of disabilities, despite it having been determined that they were each capable of living in a much freer environment. For disabled people, the Olmstead decision is comparable to Brown v. Board of Education in the way it has legally declared that segregation is an unacceptable public policy. And Olmstead was only possible because of the ADA.

Elaine Wilson died in 2004. Here, from The Atlanta Journal-Constitution article published at the time of her death:

In 2000, [U.S. District Court] Judge Shoob accepted a settlement that the state would guarantee the women community-based housing, training programs and employment.

At that hearing, Ms. Wilson testified to Judge Shoob: "When I was in the institution, I felt like I was in a little box and there was no way out."

Of the plaintiffs' testimonies, Judge Shoob said: "I was amazed. They were both so articulate. At a party after the hearing, they gave a talk about how it felt to take care of themselves and what a wonderful life they were leading. I went up on the podium and hugged each one of them. I'd never done that before."

Ms. Wilson had been shunted among institutions and shelters from age 15 and subjected to shock treatment and psychotropic drugs "that knocked her out and ruined her kidneys," said her mother, Jackie Edelstein of Atlanta.

"When I first met Elaine in 1999, it was very hard to see someone with a valuable talent," said Harriet Harris of Lithonia, executive director of Circle of Support Inc., which provided Ms. Wilson with caretakers. "She was very angry and defensive, having spent so many years fighting for survival. Like someone who had been wounded over and over, it was very hard to trust anyone."

Once Ms. Wilson was placed with a caretaker and given independence, her life changed dramatically.

"She blossomed," said Legal Aid attorney Sue Jamieson of Atlanta, who took on the case in 1995. "She took an interest in cooking and church and her personal appearance. She wanted to do advocacy for other people so [she] acquired training in presenting workshops and giving speeches.

"She developed a PowerPoint presentation that described her life. When I heard it, I was extremely moved. I had no idea that Elaine had acquired that level of sophistication. She had exploited her natural skills and abilities to a degree I would never have believed possible. It makes you wonder how many other people like Elaine are out there."

In 2004, on the fifth anniversary of Olmstead, activist Zen Garcia noted:

Olmstead v. LC & EW began as a civil rights case for two women who desired life in the community, but it ended up being a case representing the rights of all people, symbolizing to many of us the decades of legal government segregation and civil rights abuse.

We learned that, at the same time states were fining nursing homes for abuse and neglect, they were giving them bonus for keeping the cost per resident down. This caused an outcry from advocates across the nation.

Since incurring my own disability I had noticed a cycle of misrepresentation that condemned people like myself to nursing home placement. At the time, I was involved with the Georgia Department of Medical Assistance's Long Term Care Advisory Board, and I gave speeches at most of the DMA's Public Outreach Forums, declaring on several occasions that "It is not a lack of money that is the central issue when it comes to long term care, but whether states and corporations have the right to profit at the expense of the people."

Michael Gottesman, a Georgetown University Law Center professor, says it costs less money to provide for mentally disabled people in the community than in an institution. "The evidence is overwhelming in that regard," he insists. "It's politics that explains the states' resistance. It's a combination of the employees in these institutions don't want to lose their jobs, the administrators don't want to lose their kingdoms, and there are still lots of folks out in the community who are happy with continuing to lock these people up and keep them out of sight."

And, of course, Georgia is also where, in 1989, quadriplegic Larry McAfee languished in nursing homes and a hospital ICU for so long that he petitioned the courts for the right to die. Mainstream media mostly leapt on the story of a crip who felt he'd be better off dead, but as history professor and disability activist Paul Longmore writes:

He told Joe Shapiro of U.S. News and World Report that the worst thing about his disabillity was that people treated him as though he was "invisible." He told ABC's Nightline: "If you're a citizen or resident of Georgia and you become ventilator-dependent, you'd better be prepared to become an outcast unwanted by the state." His mother said that he was "thrown around like a bag of rotten potatoes that nobody even wants." "You're looked upon as a second-rate citizen," McAfee told Shapiro. "People say, 'You're using my taxes. You don't deserve to be here. You should hurry up and leave.'" "It gets to the point," he said, "where you realize that this is your life, . . . and in my case, it's not worth pursuing."

Yet, while McAfee petition to die was granted, he lives on. Significantly, the granting of his petition stated that permission for McAfee's ventilator to be turned off so that he would die would not be ruled a suicide, but the natural consequences of his paralyzing injuries many years earlier. This is just how deep the "better dead than disabled" idea runs: Allowing McAfee's wish to die through assistance in flipping a switch would've been legally ruled a natural consequence of a car accident.

But it turns out that being freed from the nursing home made McAfee's life worth living again. (Joseph Shapiro's report of McAfee's adventures is well-covered in his book, No Pity, an excellent, concise and readable account of the history of disabled people in the United States.) As for institutionalization and assisted suicide, the general consensus among disabled folks who speak on this is that being treated like a human being does that -- it makes life livable and worthwhile.


Photo description: The picture is by photographer Tom Olin from a recent ADAPT action in Washington, D.C. A black woman wearing a pink t-shirt solemnly holds a bright orange placard that reads "Real People, Real Choice" while dozens of demonstrators are visible behind her.

Setting the record straight about Jack

The following via email from Steven Drake of Not Dead Yet:

In 1993, Jack Kevorkian told Time Magazine, “If they will allow themselves to be strapped to a wheelchair for 72 hours so they can't move, and they are catheterized and they are placed on the toilet and fed and bathed. Then they can sit in a chair and debate with me."

Kevorkian is talking about us – we're some of the people who were here throughout his trial and conviction for the murder of Thomas Youk. Many of us have similar conditions to people – especially women – who make up the bulk of Kevorkian's body count. We have significant disabilities and chronic conditions.

Given the recent press coverage, this might surprise you, since Mike Wallace and Kevorkian only referenced “terminally ill” people on Sunday night. The Associated Press and the New York Times have been describing his body count this way as well.

They're wrong. In 1997, the Detroit Free Press documented the numbers of non-terminally ill people who died in his hands in the series “The Suicide Machine.” This was reaffirmed later when the results of a study were published in 2000 in the New England Journal of Medicine.

The press hasn't played into such blatant misinformation in such a big way since they gave the Bush Administration a “pass” on its suggestions that Saddam Hussein was responsible in some way for 9/11.

Jack evaded us at his trial – living up to his word has never been a strong point with him. We're here now – to challenge him, his allies, and the press who keep passing off their lies and misinformation.

Unlike those who found, or were taken to, Kevorkian, unlike those who got death instead of the real supports they could have used to rebuild their lives as disabled people – we’re Not Dead Yet, and we’re here to set the record straight.

Some links:
1993 Time issue with Kevorkian on cover. Table of contents here.
Detroit Free Press coverage of Kevorkian. Scroll down for "The Suicide Machine" series that documents the many people Kevorkian killed who were disabled, not terminally ill.

Finding the language, making the connection

I've written in the past about being a disabled person before disability studies provided a real forum for discussing social issues about living with a disability. When there were no other disabled girls in my high school and only black studies or women's studies to use as models of systematic and group oppression, and when there were no books available on disability from a social model perspective, I was the kid applying these other theories to disability in my high school and college papers.

Some instructors accepted this, some didn't or tried to lead me back to the "real topic." My immediate family were able to see much of what I did, but I didn't have the language then to really discuss it with them. If I recall correctly, the tabloid paper version of the Ragged Edge -- known as The Disability Rag then -- was my only proof as an isolated teen that my experiences and the socio-political connections I was making about group oppression weren't all in my head.

There's a discussion going on over at Alas, A Blog that reminds me a lot of all this, though the topic is sexual abuse of men or boys and how their experiences do and do not fit into the feminist analysis of sexual abuse and violence. Richard Jeffrey Newman, the author of the post in question at Alas writes what I think is a thoughtful, sensitive and brave piece about his experiences of sexual abuse as a child and where the experiences of men like him can be discussed when the discourse of feminism on the topic is rightfully focused on how men and our patriarchal culture abuse women and girls.

I don't want to talk about sexual abuse here, exactly -- though I will note that there's an article in a recent hard copy of New Mobility that specifically talks about disabled men's problems with abuse, sexual and otherwise. Unfortunately, that particular article isn't available online. (Anyone wanting further info on it can email me, if they wish.)

I'm struck by some of what Newman says about the failure of feminism to "fit" or accommodate his experiences of child sexual abuse as a man. Similar to what I've said about myself above, Newman used feminist theory and writing to articulate his experiences:

Indeed, feminism has been central to the way I understand the world since my late teens-early twenties, when reading Adrienne Rich’s On Lies, Secrets and Silence was the only thing that convinced me I wasn’t crazy (a few years later it was Andrea Dworkin’s Intercourse).

Upon reading Adrienne Rich's feminist book at age 19, Newman recalls:

I don’t know why, but those words pushed a button somewhere in me, and I began to ask—in fact, I actually heard a voice in my head asking—"But what about me? What about what happened to me?"

I remember this sensation of finding the common thread in books about minority oppression and recognizing that they both did and did not speak about my life. There was an excitement, both intellectual and deeply personal, mixed with a bewildered disappointment that what was so obvious a connection to me was nowhere actually in print. The writings by black folks and feminists about their social exclusion and oppression made complete sense and I recognized so much of my own experiences and yet disabled girls were nowhere included as a topic of these common experiences. Disability was invisible as a minority or oppressed category and my individual story wasn't explicitly seen mirrored anywhere. I was grateful for what I had found, but still felt isolated and excluded.

Newman's experienced isolation from the heart of feminist discussions of sexual abuse extended to the use of the pronoun "she":

Nonetheless, the paradox was silencing, so silencing, in fact, that a few years later—and this was after I’d started telling people I’d been abused—in a training session at a different when day camp, when the male session leader told us he was going to use “she” as the generic pronoun referring to kids who might choose to tell us they’d been sexually abused, I found myself unable to confront him about the way that choice rendered me and my experience, not to mention the experiences of the other men and, perhaps more importantly, the boys at the camp who’d had the same experience, invisible. Yes, part of why I didn’t speak up had to do both with the very public nature of the forum I’d be speaking in and the adversarial nature of what I’d be saying, but I also couldn’t speak up because I didn’t have the words, the conceptual vocabulary not only to say “This isn’t fair,” but also to point out that boys’ experience of abuse, my experience of abuse, needed to be understood on its own terms and not as a perhaps anomolous subset of the experience of girls; and one reason I did not have that vocabulary was that it was not to be found in the feminism I’d been reading.

Again, I recognize the strange sensation of having the conversation so unjustly pass him by, like a bus slowing down to pick up passengers along a road, but failing to see you as you hurry to get onboard too. (Or, perhaps even more aptly, the bus lacks accommodation to even let "your kind" get on.) The crowd moves on without you and your search for the many little connections that make up the whole of your humanity suffers another small blow. The haunting part is the uncertainty that can taint the sense of connectivity in personal experience to that particular larger whole. For me as a disabled woman, my sense of womanhood has in the past been damaged by the inability of feminism (and sometimes, individual feminists) to accommodate disability and its contingent experiences into discussions and actions of feminism.

And yet. I find my heart hardened a bit to any complaint from a man about the use of feminine pronouns as exclusionary. This is not to say I don't see the problem Newman explains of his gender being specifically excluded from full participation in feminist discussions of sexual abuse. And I recognize that specific exclusion feels as isolating for Newman as it has for me in other contexts. Rather, my allegiances are divided here, which I also find disturbing.

Women the world over and throughout time have found masculine pronouns exclusionary of their experiences, even -- and especially -- in the most sacred of texts and associations. After all, God is traditionally "he." I have my full share of rage about the continued use of masculine pronouns used generally. Feminism is supposed to be something of an antidote to that. So, how much can feminism be expected to accommodate Newman and other men as victims of sexual abuse in theory or active practice? How to make room for them in what would seem to be the obvious forum for their experiences of abuse by men and the patriarchal structures that deny them another forum to fully express their pain?

And to the extent that male sexual abuse victims will always be partly isolated from the full embrace of the feminist community because their gender is not central to the purpose of feminism, what does this disconnect say about the quest for disabled women to be embraced by the causes and understanding of feminism? Or latino women? Or transgender folks?

On the surface, it doesn't seem like there should be any conflict between feminism and the needs of disabled women as a group, but the rhetoric of feminist reproductive "choice" does not currently include a full understanding or support of how disabled and other minority women experience this choice differently in our society. More broadly, "choice" for feminism and most other liberal groups includes the "right to die," which fails completely to account for the very real dangers (and, in fact, experiences) for many disabled people of being coerced to die.

If feminist discussions of sexual abuse necessarily focus on female experiences, to what extent is the failure to help or support male victims a flaw of feminism? Can it be expected to find a way to better accommodate these men, or would that make feminism something else entirely? Is feminism compatible with the general range of needs of disabled women? If it isn't able to accommodate the meanings of choice when applied to the disability experience, that surely is a failure of feminism to embrace disabled women. So, what does that mean?

Acknowledging that he is writing in feminist space at Alas, Newman says (italic emphasis is his):

I do not believe that feminist discourse is a place where male survivors ought to expect either to speak or to be heard in a way that places our experience at the center of whatever is being discussed.

Is Newman sadly correct? Is not being the center but simply being marginally included enough for abuse victims, disabled women, transgender feminists, and other minorities to whom feminism would seem obligated to serve? What do you think?

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

On Terri Schiavo

As Harriet McBryde Johnson says, "The Terri Schiavo case is hard to write about, hard to think about." I've had an emotional deer-in-the-headlights response about it for quite some time now. Months. And while the legal options for saving Terri Schiavo from starvation may have been exhausted, I'll offer here some writings by others that provide the disability perspective so lacking in the mainstream debate.

Harriet McBryde Johnson on Slate, via Disability Law:

In addition to the rights all people enjoy, Ms. Schiavo has a statutory right under the Americans With Disabilities Act not to be treated differently because of her disability. Obviously, Florida law would not allow a husband to kill a nondisabled wife by starvation and dehydration; killing is not ordinarily considered a private family concern or a matter of choice. It is Ms. Schiavo's disability that makes her killing different in the eyes of the Florida courts. Because the state is overtly drawing lines based on disability, it has the burden under the ADA of justifying those lines.

Steven Drake, research analyst for Not Dead Yet:

Given the current research regarding brain activity and misdiagnosis, it's a virtual certainty that countless people have been helpless to prevent their own deaths through starvation and dehydration. There's an analogy to DNA evidence and the death penalty. Here in Illinois, the staggering numbers of innocent and wrongly convicted people on Death Row resulted in a moratorium on the death penalty. Whether you agreed with the death penalty or not, everyone was forced to find ways to make sure no innocent person ended up on Death Row again. The same amount of concern should apply to medically induced deaths, in which the numbers far exceed the number of convicted people executed each year.

More by Stephen Drake:

People on the right are killing us slowly with cuts to the budget and Medicaid while the people on the left kill us quickly and call it "compassion" -- either way we end up dead -- AND WE OBJECT.

Ragged Edge Editor Mary Johnson's outstanding comments at Common Dreams:

There isn't a single disability rights activist I've heard from who is happy that things ended up at such a sorry pass, and who isn't afraid that this will make liberals hate them even more than they now do. Yet it cannot help being noticed that it generally depends on whose ox is being gored as to what side of the states' rights debate one comes down on. We're all for federal laws when it comes to things like civil rights -- and gay marriage. We're not, though, when it comes to things we've labeled as "right to die" -- which we say are "privacy issues."

We might want to take another look at the cost of such privacy.

Further links to follow here.