response to Disability Law

In response to my post Disability Law,
Stephen said...
McCain’s record of voting against issues important to people with disabilities speaks for itself. This recent complete reversal on his views is nothing more than typical McCain political pandering.

I started replying in the comment field but realized my reply is bigger than a comment.
So here goes.
I don't know McCain's record on the issue, but I'm not surprised to hear this Stephen. I do know that the quote in this article reads, to me at least, as McCain saying that his goal is to change the law to make it HARDER for people to qualify as "disabled" and thus limits the people who can seek legal recourse for discrimination and other (unnecessary, remediable) disabling circumstances.

I want to take a moment and clarify my definition of disability. To me, disability has (at least) a double meaning. That is, it can be a property of the individual when it comes to something like the ability to live without pain, the ability to think and reason at your full intellectual potential (that alone is a loaded term, "full intellectual potential". It would take another post to unpack and you all would have to bear with my halting attempts to articulate something I haven't really gotten straight in my own head. For the moment, assume I mean it in a more or less self-relative way). However, it is also and often a property of the individual in the environment. Is my now chronic joint pain disabling? Aside from the more person-based aspects of it, it certainly is in the practical or environmental sense if I cannot access accommodations like a van to get me around campus.

Here's an example. I was once told on campus that access to a certain service was a privilege, not a right. This came up when I was trying to file a deferment of student fees over the phone. "No, you have to come in in person and do it" I was told. "Can I make an appointment then?" I asked. "No. It's walk in only," was the response.

Now, it was the start of the winter semester. There was snow everywhere and my campus does a notoriously poor job of removing that snow. This means if you have any mobility issues, getting around on the sidewalks on campus is exceptionally hard. It can create insurmountable problems if you don't have the means, time and equipment included, to plan ahead. Moreover, even once you navigated your way to the building where you had to go in person to sign up for the deferment, you would have to stand (if ambulatory) in line, sometimes for over 30 minutes.

This was a problem for me. Although I can get around on my feet on all but the worst days, on most days I can't stand for a half hour, and some days I cannot stand around for much over 5 minutes. Sure, I have the option of sitting on the floor - the floor that is covered in sandy slush from the boots of students standing in line. I have the option of stepping out of line and sit in a chair and hope the people before and after me are nice enough to let me back in with no or minimal fuss (and there is likely to be fuss because due to prevailing attitudes and how I look, I would be perceived as wanting "special treatment" by my peers). Thus, neither of these are ideal options. Neither is practical, and moreover, neither allows me the minimal level of dignity and self reliance that most of us (whether more or less disableable) reasonably expect.

So what to do? It seemed reasonable to me that the university should have some way to accommodate this, and I said so to the woman on the phone. What seemed easiest was to allow students for whom the set up and culture of the campus made accessing this service in person extra difficult to access this service remotely - i.e., by phone. The woman I was talking to became contentious. Her response - deferment is a privilege, not a right.

By extension, accessing fee deferment services apparently is a privilege afforded only to students who are not easily disabled by the (remediable) environmental restrictions of the campus (in winter) and the office (year round) in the context of the culture.

Could I have arranged a van pick up/drop off, I wonder now that I've managed to secure access to the campus van. Yes. However, in the case of accessing "walk in" (ha) service on campus, you never know (a) when you'll be seen and (b) how long you'll wait to be seen and (c) how long it will take to get the business done that you came to do - all of which create problems for trying to schedule van drop off and pick up times. So the van would be a problem (they prefer 24 hour notice of pick up/drop off times and locations) and if I didn't want to end up sitting on a slushy floor or relying on the kindness of strangers, I'd have to wait until I had a full two hour block or a ride from a friend (which I hate using because my physical condition necessitates way too many "favors" already) to go in in person and conduct my business. Moreover, there was still the issue of standing around waiting in line. So it had to be a day when I wasn't feeling shitty so I could stand in line for as long as might be needed. This is truly hard for me to predict with any accuracy, which means I may need to cancel a 24 hour in advance booked van ride at the last minute (something they frown on), cancel my request for a ride from a friend (thus "burning" a favor), or rally myself to get over there only to find I am too drained to wait as long as I need to in order to conclude my business. End result? What could be a more manageable aspect of my physicality becomes a disability with financial and education access repercussions (not to mention the emotional aspects of being told my physical status makes me unworthy of this "privilege" and of being totally thwarted in my attempt at self sufficiency).

I feel this should be the spirit of any law which is meant to address equal access for people with potentially disabling conditions. That is, the law should reduce disabling situations or disabling environmental properties. Not every physical trait can be predicted, although clearly some should be (limb use, sensory differences, and stamina being high up on the list), and thus the notion of "accommodations". So when a situation or environment is such that despite being accessible for the predictable varieties of humans who will use them, any good law should grant and ENFORCE access to accommodations. Certainly, no law is going to make me pain free, but if it's written right and enforced, it will make it so I don't have to choose between hurting myself and readily accessing opportunities and/or services which are available with what are at most only minor inconveniences for other people.

Thus, my limited understanding of how the language of the law has been interpreted is that it has had the effect of creating increased disability (with the definition of disability being one which includes the context of the person in his or her environment) by assuming an overly narrow interpretation of what it means to be traited in a way that makes you more easily disabled and what it means to disable.

I added a link to this blog which I have only had a chance to explore briefly, but it looks pretty good. It's an advocacy blog for the ADA Amendments Act. I'm looking forward to reading more on this issue and following it in the coming months.

Disability Law

I find the last paragraph of the excerpts from the AP article (below) to be a great example of doublespeak.
For more in depth information on the bill referenced below and the issues surrounding it, go here.

McCain vows to back changes to disabilities law
By Jacques Billeaud, Associated Press Writer
Jul 26, 2008

COTTONWOOD, Ariz. - Republican presidential candidate John McCain is pledging support for a proposal to expand protections for disabled people under an 18-year-old landmark civil rights law.

Speaking from Arizona by satellite to a disabilities forum in Columbus, Ohio, McCain said Saturday that revisions to the Americans With Disabilities Act must leave no doubt that it was intended to protect from any discrimination that's based on physical or mental disabilities.

The Supreme Court generally has exempted from the law's protection people with partial physical disabilities, as well as people with physical impairments that can be treated with medication or devices such as hearing aids.

"We must clarify the definition of a disability to assure full protection for those the law is intended to serve," said McCain, who was spending the weekend at his nearby northern Arizona getaway.
...
McCain said blame for the narrowed scope of the law shouldn't be placed on the Supreme Court, but rather on Congress. "In all due respect, I would put the blame right back on us for not writing legislation that is strong enough and specific enough so that the Supreme Court wouldn't even have to consider these cases," McCain said.

consent

The capacity in which I deal with consent processes is quite different from the issue at hand in the story below. The people I am obtaining consent from are in a research setting, not a treatment setting. Thus, in the contexts I am most familiar with, the issue of withdrawal or refusal on the part of the patient/participant is to be assumed a basic right. As a researcher, I am very careful to not only explain this but to make the environment felicitous to such a choice on the part of the people who reply to recruitment for our studies. As a teacher, I give my students examples of behavior which would constitute a "cost" for withdrawal, such as adopting even a negative tone of voice or posture with a potential or actual participant.

My point is, I am biased. I realize that this withdrawal/refusal bias is not quite appropriate when it comes to medical treatment as opposed to behavioral (or medical) research. So I try to keep that in mind as I turn over the story below about a mother who refused two (related) types of Lupus treatment for her minor daughter. Still, I can't help feeling that the choice to bring neglect charges here was a poor one. How much information was she given? And most importantly, were the medical providers aware of and sensitive to the reality of this woman's distrust which was fueled by - if not entirely based on - the suffering her daughter was experiencing?

It's not the best written story. As with any media account, there is trimming and fluffing. I've taken out what seems to be fluff but I can't make up for the lack of information. Still, it's the only story on this case out there at the moment. It's a tragic situation, one I can't help relating to somewhat since I also have trust issues with medical providers which have lead to some very and I'd say inappropriately contentious encounters. I can only imagine I'd be the same way if I had a kid who was sick.

I present the information in the article as food for thought. The issue being not whether the mother's judgment was correct or incorrect but whether the issue of patient or patient advocate/guardian trust could be better recognized and better addressed in such situations.

Excerpted from the Hartford Courant
Girl In Medical Dispute Dies
By Hilary Waldman and Colin Poitras, Courant Staff Writers
March 12, 2008
Chelsey Cruz, a 15-year-old who ended up at the center of a custody battle between her mother and the state that left each side accusing the other of harming her, died suddenly Tuesday.

The state Department of Children and Families last August filed charges of medical neglect against the girl's mother, Kimberly Castro, and took custody of the East Hartford teenager.

Castro had disagreed with three teams of doctors who treated Chelsey for lupus.

DCF stepped in following a complaint by child welfare authorities in Massachusetts. Chelsey at the time was being treated at Children's Hospital Boston.

Doctors from Connecticut Children's Medical Center in Hartford and Yale- New Haven Children's Hospital had filed complaints with Connecticut authorities, contending that Kimberly Castro was hurting her daughter by objecting to the treatment they recommended. Those charges did not stick.

After the Boston complaint, however, DCF placed Chelsey in the custody of her grandfather, who agreed to follow the doctor's orders. Both sides were awaiting a final ruling in the case when Chelsey died.

In an interview last autumn, Chelsey, an honors student, said she felt her mother was acting in her best interest. She said her biggest wish was to go home and be healthy.

"I feel kind of angry that I'm not able to be with my mom right now," Chelsey said in October.

Michael Perez, Castro's court-appointed lawyer, said Chelsey was taken to Connecticut Children's Medical Center Tuesday morning and probably died of cardiac arrest caused by sepsis, an overwhelming infection that can shut down the body's organ systems very rapidly. Perez said an autopsy is planned to determine the exact cause of death.
...
The dispute over Chelsey's care began almost six years ago, when doctors at Connecticut Children's Medical Center diagnosed the girl with lupus, a disease in which the immune system mistakenly attacks the body's healthy tissue.
...
Chelsey, her doctors said, had a serious complication called lupus nephritis, which can cause devastating kidney damage. They prescribed steroids and an immediate intravenous infusion of Cytoxan, a drug approved for cancer treatment that has shown promise in stopping or slowing immune system attacks in lupus patients.

When Chelsey continued to be wracked by complications, including abdominal pain and diarrhea, her mother lost faith in the doctors at Connecticut Children's Medical Center. Castro transferred Chelsey to Yale-New Haven Children's Hospital. There, the doctors found that Chelsey's kidneys had failed.

They blamed the lupus, but Kimberly Castro blamed the medication.

At Castro's request, the Yale doctors switched Chelsey to a newer form of treatment. But that, too, caused serious side effects and Castro objected to that, too. That's when Yale called DCF, accusing the mother of medical neglect.

After an investigation, DCF determined that Castro simply no longer trusted the doctors. As a compromise, DCF and Castro agreed that Chelsey's care be transferred to Children's Hospital Boston.

But it wasn't long before the same fight Castro had at Connecticut Children's and Yale broke out in Boston. Castro did not want any more Cytoxan or the alternative drug, Cellcept. The drugs, she said, were killing her daughter.

After a lot of angry back-and-forth, an order of protection was signed in Massachusetts in late August. Until Chelsey was returned to her grandfather's home in East Hartford, a uniformed guard was posted outside her room in Boston to prevent Castro from taking her daughter out of the hospital.
...
Perez said a Superior Court trial on the medical neglect charges had just concluded in February and that Castro was awaiting a ruling. And he said, she remains convinced that the strong medications were too much for her daughter.

"Ms. Castro strongly believes there is a connection between the drugs that were being used and the results today," Perez said.
....

fuel for the fire

Another Lyme headline. The part that spooks me is the third paragraph.

(excerpted from the Stamford Advocate)
Medical board approves probation, fine for controversial doctor
Associated Press
December 18 2007
HARTFORD, Conn. -- A New Haven pediatrician who has been praised by patients but criticized by the medical establishment for the way he treats Lyme disease was reprimanded, fined $10,000 and placed on two years probation by state regulators Tuesday.

The Connecticut Medical Examining Board voted unanimously to impose the sanctions after concluding that Dr. Charles Ray Jones violated care standards by diagnosing Lyme disease in a boy and his sister and prescribing antibiotics based on a phone conversation with their mother, months before he examined them in May 2004.

The board also found that Jones broke standards by failing to reconsider his diagnoses of the children after lab tests came up negative for the tick-borne disease, which can cause painful arthritis, meningitis and other serious illnesses if not treated promptly.

Board members further concluded that Jones was wrong to prescribe antibiotics for nearly a year without repeat exams and without any arrangement with another doctor, because the children lived in Nevada, to monitor for any side effects of long-term antibiotic therapy.

Hartford lawyer Elliott Pollack, who is representing the 77-year-old Jones, said he will appeal the board's decision.
...

Other things aside for a moment, I know it's hard but try, consider that part of the board's ruling was based on the finding that Dr. Jones "broke standards by failing to reconsider his diagnoses of the children after lab tests came up negative for the tick-borne disease". I thought that a Lyme diagnosis was supposed to be more based on clinical presentation than lab values. What crazy Lyme-loving website did I get that from? The CDC, among others.

Lyme disease is diagnosed based on symptoms, objective physical findings (such as erythema migrans, facial palsy, or arthritis), and a history of possible exposure to infected ticks. Validated laboratory tests can be very helpful but are not generally recommended when a patient has erythema migrans.

On the CDC Lyme website, this passage continues with a helpful link to the current, detailed recommendations on serological testing for Lyme. If you do click there, what you get is a report called "Recommendations for Test Performance and Interpretation from the Second National Conference on Serologic Diagnosis of Lyme Disease".

The Second National Conference on Serological Diagnosis of Lyme Disease was in October of 1994.

I'm going to let you all do the math. You'll do it faster than me. I nearly had to count it out on my fingers...good thing it wasn't much older or I'd have run out of fingers!

My point. There are two, or one somewhat bifurcated one depending on how you look at it. My point is that the CT board's finding engenders and perpetuates too high a level of confidence in serological testing for the clinician dealing with the realities of Lyme presentation. The board's level of confidence would be well founded if the testing had improved much in the over 13 years since the "current" test performance and interpretation recommendations were made. It has not. I wonder now as I so often do when I read the latest Lyme fueled controversy story (or maybe more appropriately, the latest controversy fueled Lyme story) - Can't we do better than this?