Problem Chylde: In Her Solitude

I’m restricting my personal gripings about feeling like a shitty ally to this one sentence.

A while ago I linked to Crip Chick’s entry about Katie Jones, a young schoolgirl with cerebral palsy (CP) whose parents placed a “Do Not Resuscitate” court order on her wheelchair. The December 9th Chicago Tribune article, titled “Schools ponder role as child nears death,” tried to paint a sympathetic portrait for why the parents would make this decision and how, after a two-year discussion on the subject of Do Not Resuscitate orders (DNRs), the school officials decided that it would honor the order’s wishes. The previous policy required school officials and emergency medical personnel to do whatever emergency procedures were possible to keep Katie alive; now the presence of that order changes that reaction.

In Katie Jones’s case, as Shiva at Biodiverse Resistance points out, there is nothing to suggest that she is any nearer to death than anyone else:

Despite the title of the Chicago Tribune article being “Schools ponder role as child nears death”, there doesn’t actually seem to be anything here to explain why she is supposedly near death, apart from the vague “increased susceptibility to infection” (which is true for a lot of people with a lot of impairments, but doesn’t necessarily prevent them, with medical people who actually regard them as human beings with the same right to life as any other, from having a “normal” life expectancy). Katie has “severe” cerebral palsy; from how she looks in the photos of her on the Chicago Tribune website, i know several people with CP as severe as hers is, who were not expected to die at the age of 8.

From what I can understand about cerebral palsy, it is also not a terminal illness. It can manifest in people in different ways, affecting different parts of their physical abilities. But having cerebral palsy does not place a person in an immediate danger of death and a person can live with cerebral palsy into adulthood. People with cerebral palsy are aware of their surroundings, can communicate with others, and are capable of cognition; the willingness of able-bodied people to recognize this awareness, to engage in communication with people with CP, and to take people with CP’s perspectives into account is an entirely different matter. Trinity elaborates on this point:

As Amanda at Ballastexistenz has pointed out over and over in blog post after blog post, there are many different ways to be aware of things and many different ways to have that awareness respected or disrespected. Since the only thing I know of this child is that she apparently likes school, it makes the most sense to me, not knowing much about the whole thing, to try to give her as many of those good experiences as possible. CPR and the like might eventually facilitate that, so why the DNR? Why now? She’s not dying.

And the thing that really bothers me is the statement that only the doctors and parents understand. Don’t the people actually living with illnesses (and does she have one? All I see is these choking fits, which are for some reason “worsening”, despite that all she’s described as having is CP) understand far more than Mommy does? Like I say above, as Amanda and others point out, there are lots of different ways to be aware. And lots of ways in which severely disabled people are assumed not to be aware when they actually are.

Which is particularly disturbing given that all they mention in this article is that she has CP. The same thing I have. Which does not affect cognitive capacity at all, yet they’re talking in a way that suggests she’ll never be aware enough to tell anyone whether she wants to live.

So why not resuscitate? Why exactly is Katie Jones being denied the right to live by her parents, and why are various institutions — educators, medical authorities, the government — complying with her parents’ wishes? What does Katie Jones have to say about her parents’ decision? Has anyone asked her?

Katie Jones, who suffers from severe cerebral palsy, uses a communication device that enables her to express her thoughts by bumping the switch with her head. (Tribune photo by JIm Prisching / September 18, 2007)

Hold the phone. She can express her thoughts. She’s in second grade. What do you think her answer will be if someone asks, “Do you want to live, Katie?” The article does not bother asking once, but it did take a picture of the fact she can communicate with people. It also let us know whose experiences set the blueprint for this order:

[Dr. Kimberly] Battle-Miller, who began as a pediatric critical-care doctor more than 10 years ago, has been baptized in the kind of emotionally charged emergencies that only the doctor, nurse or parent of a terminally ill child can ever really know.

Remarkably enough, I think the able-bodied can know the kind of emotionally charged emergencies that affect a loved one they’re caring for. But they’re not the ones carrying orders not to resuscitate them everywhere they go. This little girl, whose experiences no one has asked about, has that order. What will she be denied in the scope of this order? Let’s look at the Tribune article to see.

But they will not perform cardiopulmonary resuscitation or use a defibrillator. Nor will they intubate her, a procedure that puts a flexible plastic tube down the patient’s throat to provide ventilation.

Don’t let the fancy jargon fool you. “Cardiopulmonary resuscitation” is good old-fashioned CPR.

Cardiopulmonary resuscitation (CPR) is an emergency medical procedure for a victim of cardiac arrest or, in some circumstances, respiratory arrest.^[1] CPR is performed in hospitals, or in the community by laypersons or by emergency response professionals.^[2]

CPR consists of artificial blood circulation and artificial respiration^[1] (i.e. chest compressions and lung ventilation).^[3] CPR is generally continued, usually in the presence of advanced life support, until the patient regains a heart beat (called “return of spontaneous circulation” or “ROSC”) or is declared dead.

CPR is unlikely to restart the heart, but rather its purpose is to maintain a flow of oxygenated blood to the brain and the heart, thereby delaying tissue death and extending the brief window of opportunity for a successful resuscitation without permanent brain damage. Defibrillation and advanced life support are usually needed to restart the heart.

So, because Katie Jones has cerebral palsy, she cannot receive CPR if she goes into respiratory arrest…why? I’m not being an unsympathetic bitch; I understand her parents are in emotional straits. I understand that it is needlessly expensive to take care of a child with cerebral palsy. (I say “needlessly” because if this country prioritizes everyone’s life the way it should, not only would everyone have health care, but the disabled and differently abled will be able to receive the care and treatment they need without people paying exorbitant amounts of money simply to stay alive.)

But the parents’ need for control of the situation does not extend over Katie Jones continuing to live and having access to means that prolong her life. It is not about the parents having control. A person being allowed the chance to live trumps control. Not even the guarantee — the chance. Katie isn’t even getting that, and why?

Doctors, she said, are sometimes focused on one thing — saving lives. They lose sight of the toll such action can take on patients and their families.

Taking a break from her shift on the pediatric critical-care unit at Central DuPage Hospital, Battle-Miller recalled children who were brought in for their end of life care. The doctors and staff, she said, didn’t always know what to do.

She paused, thinking back on those early days of her career. “They had very unpleasant deaths,” Battle-Miller said. “We were intubating a lot of these kids, preventing them from dying naturally. Some of them would die on the machine. Some would survive the episode but have to keep re-living it.”

Why should doctors refocus the critical purpose of their jobs? Because Katie has cerebral palsy? Able-bodied people do not always die naturally. Sometimes the threat of death can emerge. But because this child has cerebral palsy, you’re not even going to try to revive her? Any loss of a human life is difficult. But because it’s difficult, it’s okay to give up, to deny even the most basic attempts at reviving that life? We’re not even talking about advanced machinery and invasive procedures here.

In layman’s terms, fuck that shit.

Where does the advanced machinery come into this equation? At the end of the article, it’s called the “no beeping” rule. Don’t even get me started on the damned “no beeping” rule. Kay/Blue expresses it in a nicer way than I can right now:

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?

I would much prefer the beep of a machine that keeps someone alive to one of the billions of cellphone ring tones out there. In terms of priority. Just sayin’.

So what’s the beef, people? Why do we insist on allowing tropes where we can’t imagine what someone is thinking or feeling when we are capable of asking people what they are thinking or feeling? Why do we mandate silence when there is a population of people with disabilities telling us what they experience and how they feel? To make signing these orders easier? Whose peace of mind does that benefit? I’ll leave the ending of this entry to Bint:

You know, people with disabilities really take a lot of shit off of people. We put up with the casual use of words like “retard”, “nut job“, “lunatic”, “vegetable”, every damned day. We generally don’t go around blowing up any nursing homes prisons just because we know how inhumane they are even though some folks have no problem with this sort of “direct action”. We put up with shitty housing, illegally inaccessible government buildings, and condescending store clerks every effing day. We are raped and told that it was our own fault. Yet, we still put up with that shit.

Many of us just don’t have the energy to fight every instance of injustice that we personally experience. Taking on the entire ableist system is more than most of us are willing to do. But here’s the thing: Why should we have to do it? Why aren’t YOU people fixing yourselves? Why should we have to stop you from trying to eliminate us completely?

Why aren’t we rethinking the ways we perceive ability? Why aren’t we? Why do we default to destruction even when our loved ones’ lives are at stake? Hate does not always manifest in convenient epithets or horrendous crimes. Sometimes it emerges through court orders, costs of living, and not bothering to ask the people these decisions affect the most. Silence kills. Feminists, anti-racists, anti-classists, all fighters against oppression know this firsthand in each of our communities.

So why are so many of us silent now when someone is robbed of her ability to defend her life?

Many thanks to BFP and Trinity for lighting a fire under my ass.