Friday at the Gimp Compound or Dizzying up the Girl

So, about ten days ago, my trach's cuff burst. In my throat, in the middle of the night. And just for fun, this happened when I was just coming down with a virus of some sort and happened to be sitting on the toilet. I was with a new nurse -- new to me and new to the profession, so she'd never seen a trach switch before. And my Mom had never done one, but we woke her up for the opportunity. Dad was there too -- it was an exciting event for us all.

But it went very well. When I'd last had a scheduled Parts Replacement Event, I'd asked the doctor to show both my mother and the nurse present how to do it. We were mostly prepared. We only lacked sterile lubrication to make it easy to slide the new one in. But in the excitement, we didn't pay the usual attention to the exact amount of water to fill my cuff comfortably with.* And we didn't adjust the strap around my neck just right -- because I have a scrawny neck, the trach can be shoved in too far so that it curves against the back wall of my windpipe and the opening is curved up against the front of my windpipe, which both hurts and impedes delivery of air.

What with the virus and this trach switch requiring fine-tuning for optimum breathing and comfort, I've been pretty dizzy the last ten days. Oh, and I've just finished weaning off the Effexor Dr. Perky placed me on in rehab, so that might be contributing to my dizziness too.

I've got an appointment for a blood gas** next week and I've spent part of today with the cuff filled beyond speaking-capability in order to better approximate the exact settings I used in the hospital, which is when I was last monitored by RTs and a pulmonologist. I've been the vent expert in my life since I came home with the machine last March.*** Ironically, state-paid home health care for a vent user requires hired nurses, but nurses are not trained in the specialty of vent management unless they get special training to be ICU nurses or the like. Nurses also are not typically allowed to do trach change procedures, though obviously it is necessary that they be prepared to step up in a setting like mine if I need one in an emergency.

Respiratory therapists get training on ventilators, what the settings all mean, how they effect a patient, and they learn to do trach changes and take blood gases (and do the lab work) as part of their routine in a rehab hospital like I was at. I very much enjoy the individual women who are employed as nurses for me, but geez. The rules don't quite fit the purpose and I need an expert just now.

Oh, and there's a new nurse coming to work here tonight. I don't know if she's ever done suction, worked with a vent, or what. So finding that out is my job tonight. I'm dizzy and tired and fed up with these regulations that don't really give me the full expertise they claim they do.

______________________________________________

* The cuff is the inflatable part of a trach that puffs up in the windpipe to ensure that the air going in the tube gets to my lungs and doesn't go upward and out my mouth and nose instead. The trach I currently use, a Bivona TTS, inflates the cuff with sterile water instead of air, which other kinds of trachs use. So when it burst, I immediately got about 7 or 8 ccs of water in my lungs in addition to not getting the vent air where I needed it. And we added about 5 ccs more before being certain the cuff was blown.

The photo above is the Bivona TightToShaft trach kit, which includes the trach itself (top left), the obdurator (shaped in a gentle curve like the trach, it's hard plastic that fits inside the trach tube to help with insertion), and the wedge or "tooth" (top right, used to unhook the installed trach from the vent tubes for suction or getting on clothing). The red cap to seal off neck breathing while leaving the trach installed and cheapo trach tie I do not use but both are also in the picture above. You can't really see the cuff, but it looks just like a little condom on the end of the naked trach. The tiny photo inset shows the cuff inflated.

** A blood gas (or arterial blood gas, ABG) is a blood draw taken from an artery in order to measure oxygen, carbon dioxide and other stuff. In this case, it helps determine if my ventilator settings are giving me too little or too much air.

*** When I say that I am the vent expert in my life, I mean that I know more than any person who comes in contact with me -- including the dude from the medical supply company who is supposed to come monthly and do a maintenance check on my machines. I know what the codes are for the various alarms when they go off, I know what the settings of frequency, sensitivity, tidal volume, expired tidal volume, PIP, PEEP, MAP, etc. all mean generally and in terms of what I suposedly need. I know how to cancel the alarm and change settings depending on if I am getting sufficient air, which varies according to how full the trach cuff is. I know that a high pressure alarm usually means there is condensation in the sensor tubes and I know the ways to fix that. I'm happy and proud I have learned all this in the past year, and it was my responsibility to do so, but given that I am required to have nurses in my presence constantly in order to receive state aid for home care, I am not thrilled that I know more than every single professional around me and that their nursing training does not mean they bring the actual vent machine expertise to the job.

Resolutions for the new U.S. Congress

Pelosi was signed in as House Speaker today -- exciting and historic, that. I don't have much faith in her "100 hours" plan because the most important topics for this new Congress to address are too complicated to solve so quickly, but I do have hope for the year. Disability issues top the list of concerns Pelosi and the Democrats need to address:

1) Ending war and increasing peace in Iraq and Afghanistan -- From a purely economic perspective, responsible health care for injured American military personnel already endangers all of us:

More than 1.4 million U.S. soldiers have been deployed to Iraq and Afghanistan since late 2001, and about 26 percent have filed disability claims, according to raw data provided by the Department of Veterans Affairs. That percentage could grow as soldiers leave the armed forces.

''I see the whole thing as a mini-Medicare, another huge entitlement program, which is going to be sprawling out over the course of our lifetimes and our children's lifetimes,'' said Linda Bilmes, a Harvard University public finance professor and co-author of the Stiglitz study. "The big costs come when they get back . . . they stand a good chance of being really underfunded and not taken care of properly.''

Veterans groups worry that they'll be forced to compete with other government programs for funds. Not enough attention is being given to the future mental health and medical needs of Iraq and Afghanistan war vets, they say, especially given how those wars differ from previous ones.

This doesn't even count the much higher costs to Iraqis, with civilians dying from non-war-related, preventable health conditions now due to an almost total lack of access to medical care:

Zainab may be one of the 655,000 Iraqis who would be alive today if the Bush administration hadn't launched its criminally conceived and executed war. Violence caused most of the excess deaths. But 54,000 people died from non-violent causes, such as heart disease, cancer and chronic illness. They were victims of a health care system eviscerated by mismanagement, ill-placed priorities, corruption and civil war.

PetitPoussin comments on another tragic example here.

Congress' number one priority needs to be working honestly to end this conflict. Our job is to make them keep at it until it's done.

2) Universal healthcare and Medicare policy reform -- From the corrupt Republican Part D drug plan to federal requirements for proof of citizenship, recent reforms have complicated health care for thousands of Medicare recipients and shut others out altogether. Not to mention the over 46 million Americans who remain completely uninsured.

3) ADA Restoration Act -- Okay, this doesn't sound nearly as urgent as the two problems above -- and it isn't. Except that the war and increasing lack of health care contribute to the number of Americans with disabilities who must rely on the anti-discrimination law to remain a productive part of society. With Mark Foley and his vendetta against the ADA gone, Democrats have a chance to truly support disabled people by bolstering the ADA against further beatings from the Supreme Court.

House Democrat Steny Hoyer in 2004 speaking at the Tony Coelho Lecture in Disability Employment Law and Policy at the New York Law School:

When we wrote the ADA, we intentionally used a definition of disability that was broad -- borrowing an existing definition from the Rehabilitation Act of 1973.

We did this because the courts had generously interpreted this definition in the Rehabilitation Act. And, we thought using established language would help us avoid a potentially divisive political debate over the definition of "disabled."

Therefore, we could not have fathomed that people with diabetes, epilepsy, heart conditions, cancer and mental illnesses would have their ADA claims kicked out of court because, with medication, they would be considered too functional to meet the definition of "disabled." Nor could we have fathomed a situation where an individual may be considered too disabled by an employer to get a job, but not disabled enough by the courts to be protected by the ADA from discrimination.

The .pdf file of Hoyer's speech is locked from copying and pasting here, but I encourage you to follow the link and read the four principles he gives for the restoration of the ADA that Congressional action can provide. Briefly, these are 1) restate Congressional intent, 2) focus the law on discrimination and not details of an individual's disability, 3) disallow the courts' argument that disabled people must be saved from harming themselves, and 4) reassert that accommodation means finding solutions together rather than creating an adversarial relationship between employers and employees.

That's my short list of work for the new Congress to tackle. Not too much to ask.

Minimum wage for everybody -- yes, even the disabled

Arizona voters passed a new minimum wage that goes into effect this week and for the first time it will not exempt disabled workers from economic parity. As you might imagine, this disturbs many people who run business using sheltered workshops where pay is adjusted according to perceived differences in worker productivity.

According to the New Standard News:

Some 5,600 employers pay sub-minimum wages to about 424,000 workers across the country, according to a 2001 report from the US Government Accountability Office. More than half make less than $2.50 an hour.

Marta Russell, disability rights activist and author of Beyond Ramps (an excellent analysis of the economic ghetto created for disabled persons in a capitalist society), comments:

"‘Commensurate wage’ is an Orwellian tag for a law that legalizes inequality," said disability-rights activist and author Marta Russell. "It degrades the disabled laborer to equate his [or] her productive capacity as less than [that of] a non-disabled laborer and to not give them equal pay. Who is to say that the disabled worker’s labor is not equal to or more productive or profitable for their employers than the average couch potato’s?"

And:

"All laborers should be paid at least a minimum wage, and preferably a living wage," Russell, who uses a wheelchair, told TNS. "That is the only way to raise the disabled workers in question here to an equal economic level with non-disabled workers and lift some of them up out of a below-poverty-level existence. To be paid anything less is to further enslave the disabled worker more than workers in general are already enslaved."

"Frozen girl" discussed on TV tonight

If my sources are right, there should be a discussion tonight on CNN's Nancy Grace show of the "frozen girl" and the ethics of her parents' choices that are recently making news. From the BBC News:

Ashley X was born with severe and permanent brain damage, called static encephalopathy.

The nine-year-old has the mental ability of a three-month-old baby and cannot walk or talk.

Her parents argue that keeping her "frozen" as a girl rather than letting her go through puberty and growing into a woman will give her a better life.

They authorised doctors to remove her uterus to prevent menstruation, to limit her breast growth through the removal of breast buds so that she would not experience discomfort when lying down, and give her doses of hormones to stop her growing taller.

Opponents have accused Ashley's parents of "Frankenstein-esque" behaviour - of maiming the child for the sake of convenience.

From the website of Ashley's parents:

The “Ashley Treatment” is the name we have given to a collection of medical procedures for the improvement of Ashley’s quality of life. The treatment includes growth attenuation through high-dose estrogen therapy, hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley. We pursued this treatment after much thought, research, and discussions with doctors.

And further details on the procedures:

In early 2004 when Ashley was six and a half years old, we observed signs of early puberty. In a related conversation with Ashley’s doctor, Ashley’s Mom came upon the idea of accelerating her already precocious puberty to minimize her adult height and weight. We scheduled time with Dr. Daniel F. Gunther, Associate Professor of Pediatrics in Endocrinology at Seattle’s Children’s Hospital, and discussed our options. We learned that attenuating growth is feasible through high-dose estrogen therapy. This treatment was performed on teenage girls starting in the 60’s and 70’s, when it wasn’t desirable for girls to be tall, with no negative or long-term side effects.

The fact that there is experience with administering high-dose estrogen to limit height in teen-age girls gave us the peace of mind that it was safe—no surprise side effects. Furthermore, people found justification in applying this treatment for cosmetic reasons while we were seeking a much more important purpose, as will be detailed below.

In addition to height and weight issues, we had concerns about Ashley’s menstrual cycle and its associated cramps and discomfort. We also had concerns about Ashley’s breasts developing and becoming a source of discomfort in her lying down position and while strapped across the chest area in her wheelchair, particularly since there is a family history of large breasts and other related issues that we discuss below. The estrogen treatment would hasten both the onset of the menstrual cycle and breast growth. Bleeding during the treatment would likely be very difficult to control.

It was obvious to us that we could significantly elevate Ashley’s adult quality of life by pursuing the following three goals:

1) Limiting final height using high-dose estrogen therapy.

2) Avoiding menstruation and cramps by removing the uterus (hysterectomy).

3) Limiting growth of the breasts by removing the early breast buds.

The surgeon also performed an appendectomy during the surgery, since there is a chance of 5% of developing appendicitis in the general population, and this additional procedure presented no additional risk.If Ashley’s appendix acts up, she would not be able to communicate the resulting pain. An inflamed appendix could rupture before we would know what was going on, causing significant complication.

I plan to watch the show tonight and then discuss this further.

Choosing a college

Sitemeter tells me that someone wandered here with the Google phrase "I'm a disabled teen looking for the right college" despite the fact that I've never said anything that would be specifically helpful in that regard. But since I did find the right college for myself back in 1987 when I was a disabled teen, I'll give it a shot and invite anyone else with suggestions to add them as well.

My entire reason for being compelled to check out Arizona State University as a school to attend came from when I was a shy freshman high school girl and overheard the only other wheelchair user at my school (a senior guy) mention ASU while we were riding the short bus to school one morning. Or maybe he was talking about UofA, but I got it in my head that Arizona would be hospitable in ways that Illinois was not.

I had the grades to get in most places, but never considered anything Ivy League-ish because the ADA didn't exist then and I was well-aware that the older the building, and the more historical the building, the less it would be useful to me. I don't recall how many schools I visited my senior year-- not so many since I was fixated on ASU -- but, inexplicably, I visited Wisconsin's Whitewater campus too. No contest because of one issue -- snow.

My Dad, my twin sister and I scouted out ASU on Halloween day of my senior year in high school. I recall this because Bert and Ernie were the first two individuals I met on campus and this no doubt effected my decision. Giant costumes of Sesame Street characters somehow epitomized the joys of college for me, I guess.

We met with Disabled Student Services and they arranged a tour of campus (hosted by a disabled man) and an accessible dorm room. I stared at palm trees, which I had never been in the presence of before. I ate actual Mexican food made by people who are not bland Scandinavians afraid of cooking with spice. It was really an obvious choice, though made with lots of naivete. And it was the right one for me. Any doubts my Mom and Dad had about me zipping off to live halfway across the country when I did not even have a motorized chair until the week before college began, they mostly kept to themselves and waited to see how far my youthful enthusiasm would carry me.

Presumably wiser now, this is what I'd look for in choosing a college for a disabled teen:

• Accessibility, both architectural and attitudinal. You don't want to spend too much time fighting to get in the building or to be able to take the test, so institutional commitment to access is not enough -- it should already be substantially in place.


• Actual disabled students visible on campus going about their lives like everyone else. This includes temporarily disabled students successfully getting around because the school has a means to help them. Golf carts with student chauffeurs were part of disability transportation services at ASU. A university capable of dealing with sudden impairments of its students is more likely to be flexible enough in its accessibility services to accommodate a wider variety of needs. As a scooter user, the repair department was absolutely crucial to me.


• Diversity programs that include disability as a category of diversity along with race, sexual orientation, etc. Better yet, classes or programs in disability studies would show that someone at the school has a clue.


• Bathrooms in several places around campus that are not only accessible, but comfortably accessible. Don't enroll somewhere you'll be miserable peeing at for the next four years, it just isn't worth the stress.


• Ditto for general living accommodations. And the grocery store that you'll need to buy ramen noodles at needs to be handy too.


• Public transportation that is relatively reliable.

That's my list, for now. Anything else I didn't think of?

Miss Ability: Judging disabled women's beauty

Miss Ability has been called the surprise hit of Dutch television in 2006, but the Times Online reported last week that the rights to the program in Britain, France, Germany and the U.S. have now been snapped up. Soon we, too, can look forward to a live beauty contest where disabled women compete in nightgowns and bathing suits, then present short video films on how they've "overcome" their physical conditions -- whatever impairments contestants have must be "visible to the eye" in order for them to compete. Viewers get to vote.

Absolutely Independent, the Dutch company selling the rights to this idea asks in its prospectus:

Ever whistled at a woman in a wheelchair? Checked out the boobs of a blind babe? If the answer’s ‘no’, this barrier-breaking show will put an end to that.

According to Times Online, the company insists that "the show does not patronise disabled people." The article also adds:

British broadcasters will bid for the show in the new year. But there are fears that the trend for extreme reality shows could produce tasteless television.

It would be a shame if this led to television becoming tasteless, wouldn't it? I hope we never live to see the day. But as you might expect, the excitement precipitated by mentioning the ogling of the boobs of blind babes has gotten some attention, and the discussions has been interesting.

Report of this at MensNewsDaily shows exactly how problematic a viewer-determined pageant for disabled women could be. Well, or pageants generally:

“Who are you voting for Bubba?” “Gee, that blond chick is in a wheelchair, but she got hellava big hooters.” “Me, I’m gonna vote for the redhead, her eyepatch is so kinky” “You wankers are nuts, I’m going to vote for the broad with no arms. She’s the perfect woman, you can hit her and she can’t hit back.”

It's all there in just a few sentences, isn't it? Ableism, sexism, objectification, male privilege, fetishism, and the connection between objectification and violence, though it's all said in good fun, of course. What a relief the program is not patronizing too.

On the Snopes bulletin boards, these comments on Miss Ability:

I think that many disabled people would take any sort of recognition as a meaningful human being, rather than the state of inconsequence that is so often relegated to them, even if that recognition is based on something so limiting and empty as appearence.

Challenging? Yes. Progressive? Nope.

***

I feel like it's a little sad that we need a separate ceremony for disabled people. I mean, I know why...I know that people are weirded out. But I feel like ultimately, it would be better if disabled people could participate alongside their nondisabled counterparts.

***

I have this vague uncomfortable feeling that this is something like a modern day side show. "Look! She's crippled, but she looks hot in a bikini! And she talks, too! Amazing!"

***

While I can understand and agree with many of the concerns presented here, I do think this is a small step in the right direction. Too often, even in modern times, disabilities of any kind lead to ostracism and being outcast, whether from prejudice or people just "feeling weird". It's good that the media is finally acknowledging that the disabled can be attractive as well. I have been attracted to disabled women before.

My guess is that the above represent some fairly common opinions about disabled people and sexual attractiveness of women. Disabled people are all needy of attention and approval. It makes sense to separate out disabled women from "normal" women when the topic is beauty. Being seen a legitimate sexual subject for the male gaze is progress for disabled women. The comparison to a circus sideshow is apt, though.

Jessica at Feministing isn't sure exactly what position to take, noting that it "seems kind of cool -- at least in terms of redefining beauty standards." (Emphasis is hers.) Commenters are also divided, though I admittedly don't read comments over there often enough to know the regular trolls.

A sampling of those comments:

Now disabled people can be treated like meat too?
It was interesting that only certain disabilities were allowed. None of those "yucky" (might get in the way of guys finding them hot?) disabilities like cerebral palsy or those that can't be seen?

***

How much money went into this show that could've been better spent, say, on research or helping poor, unattractive wheelchairers build a ramp in their home?

***

I think it's even more disgusting than the usual beauty pageant. What a favor to disabled women (who are in desperate need of enforcement of laws designed to protect their rights, products they can use, and gynecologists who will examine them)--let them be part of the great American sexism show of all time.

***

Why not just include women with disabilities in the typical crap beauty pageants? Doesn't this seem at odds with the "least restrictive environment" idea?

***

In terms of the zeitgeist, this is actually possibly a step in the right direction. It's not so far to go from recognising disabled people as sexual objects to recognising them as sexual beings.

***

The emphasis on contestants having "overcome" a disability ... is completely patronizing and misleading. My disability is a part of me. I cannot "overcome" it any more than I can "overcome" being female, though both of those traits are things that often put me at a disadvantage in the world. It is something you work with and work around, potentially forever. The vital difference is that "overcoming" something means you put it behind you forever. Non-disabled people just love to hear about disabled folks who "overcame" their disabilities because, phew, that means they're fine now and we can go back to not giving a shit about them or their ongoing difficulties or their need for tougher access laws! It is the disability equivalent of the "post-feminist" label and I say it sucks.

The last two comments come from women who identify as disabled and highlight the ways in which this competition differs from your standard beauty pageant for the women contestants and the women those contestants are meant to represent. In addition to the cultural beauty standards that will inevitably be used in judging the winner, the narrative of "overcoming" also determines who is the best disabled woman.

This overcoming narrative -- particularly as part of a contest where the subjects must be "visibly disabled" -- is a paradoxical fiction. Each woman must look stereotypically physically disabled but prove she doesn't suffer the consquences her impairments or society create for that very visibility. Or that she doesn't mind. It goes without saying that the best woman in this contest will not discuss any mental illness or incontinence or lack of civil rights. She won't drool but she won't hide her limp either, because the audience needs to see that. Odds are she'll present as straight and white. She'll sing well and dream of world peace. Men find her pretty despite everything, and all is right with the world.

Books for the new year

Happy New Year everyone!

Like every book lover I know, I've got a towering (and growing) pile of books waiting to be read. I thought I'd share a brief list of some books from that pile that I plan to read in 2007. All of these are disability-related and currently wedged between my full bookshelf and dresser. If you've already read them, are interested in discussing them, or happen to be the author, this is your heads-up to what I hope will be interesting future discussions here on wherever these books take us.

The Speed of Dark by Elizabeth Moon -- Moon won the Nebula Award in 2003 for this novel told from the perspective of a young autistic man. Normally a writer of military sci-fi, this story apparently differs from the author's usual genre and was prompted because she has a child with autism.

Geek Love by Katherine Dunn -- This will be a reread for me, but I haven't been back to it since I first found it at the fabulous feminist bookstore Women and Children First in Chicago when it was originally published in 1983. An amazing novel about carnival freaks and disability told in first-person by Olympia Binewski, a bald, humpbacked albino dwarf.

Crip Theory: Cultural Signs of Queerness and Disability by Robert McRuer -- From the Amazon description: "McRuer examines how dominant and marginal bodily and sexual identities are composed, and considers the vibrant ways that disability and queerness unsettle and re-write those identities in order to insist that another world is possible."

Planet of the Blind by Stephen Kuusisto -- Fellow disability blogger Stephen's first memoir.

My Body Politic by Simi Linton -- Author of the excellent Claiming Disability: Knowledge and Identity tells her personal story.

Blackbird Fly Away by Hugh Gallagher -- A personal memoir.

By Trust Betrayed: Patients, Physicians, and the License to Kill in the Third Reich by Hugh Gallagher -- A definitive book detailing the eugenics movement against disabled people in Nazi Germany. Gallagher also wrote FDR's Splendid Deception.

Wicked by Gregory Maguire -- I read this while in the hospital and unable to blog about it. An alternative telling of The Wizard of Oz from the Wicked Witch Elphaba's point-of-view. Disability and physical difference everywhere.

I also hope to read Jen Burke's A Life Less Convenient and Stephen's newest book, Eavesdropping, but I haven't bought them yet.

Looking for Harriet

For the many people googling Harriet McBryde Johnson because of her Christmas Day editorial in The New York Times, she's mentioned on this blog here, here, here, here and here.

And . . . she's back

No, not me.

I'm done with the family Christmas events but was gifted with several books, which I must read now so that I can trek to the bookstore and fondle some more.

Liz of Grannie Gets a Vibrator is back. She has been back for a while, actually, blogging as Lymphopo at her new site As The Tumor Turns. I'm honoring her with gimp status in my sidebar -- her recent medical adventures and the financial consequences of same certainly qualify her.

In my previous post, I link to my August 2006 post "Until every single penny is gone," which I wrote when inspired by how deftly Liz spoke about the financial dramas that accompany medical ones. So, update: The Liz referred to at the top of the penny post is this amazing diarist of tumordom. Drama. Adventure. Hairlessness. Cute canine-children wearing pants. It's all there, and I wanted to pass that news along before diving back into the dreamy prose of Allende's Inés Of My Soul.

Saturday Slumgullion #22 -- Best of 2006

This is the last slumgullion of 2006, and like Hugo Schwyzer, I've gathered a list of what I feel like are my best posts of the year. They aren't the ones that created the most discussion, by any means -- and in any case, whatever controversy I managed to create occurred when I crossposted over at Alas. The top five posts listed below seem to all be fairly personal accounts of my disability experience. Make what you will of the fact that I am proudest of them.

Also, go ahead and look over your own blogging of the past year and either leave a link to your "best of" list, or put the list in the comments here as part of my last slumgullion. Disability isn't a topic requirement.

August 13: Until every single penny is gone

September 4: The joys of impairment

September 25: "Is your life hard or super-hard?"

November 6: My déjà vu

December 7: Last year

Don't expect any original content on my blog here for at least a week.

Happy New Year!

Gone beta

I've finally been given the option to update my blogger account to the beta version and while I know this can cause some problems in commenting, I hope the ability to categorize posts will be useful. Anyone having trouble with comments, go ahead and email me at kay(dot)fine(at)gmail(dot)com with any comments that don't seem to go through.

Someday I hope to switch to wordpress, but I'm afraid that won't be soon.

My people

This is the travel post I never completed in time for the last Disability Carnival over at Planet of the Blind. Lots of great posts over there.

The summer of 1998 I attended the Society for Disability Studies conference in Oakland, California. It was my first and only time traveling by air without any non-paid assistance from start to finish -- that is, I lugged my own suitcase out to the scooter-accessible van that took me to the airport and lugged it back into my apartment three days later without relying on friends to get me to and from the airport as I had usually done before.

That may not be a big deal for most people, but I was entrusting my scooter -- my only means of personal movement -- to the ordeal of airplane travel, and gambling on it being there for me in an unfamiliar city I was spending the weekend in. Alone.

If anything was broken in transit, I had absolutely no backup plan, and given the regularity with which wheelchair users' power chairs are damaged by the airlines I was taking quite a risk. I'd decided the risk was better than staying home. Additionally, I was counting on a scheduled accessible van to meet me at the airport, and for everything to be in order at the hotel.

This isn't the long story of mishaps you might expect it to be.

I arrived early in Oakland and the van driver found me easily. As he loaded my bag and, well, me into the van, he chatted about how busy he had been in the past few days. He was aware that I was visiting for some sort of disability event. He said, "I've been driving your people around all week."

My people. Disabled folks.

It was an excellent welcome to town.

Book meme

I've been tagged by IrrationalPoint for this book meme, which will offer a little taste of the book review I'm currently working on.

Here's the meme:

1. Grab the book closest to you.
   
2. Open to page 123, go down to the fifth sentence
   
3. Post the text of next 3 sentences on your blog
   
4. Name of the book and the author
   
5. Tag three people

She pats your arm and tells you, "That's all he wants, Helen. Just the face. You touch the cage. You make the face. It'll be fine."

That's page 123 from Georgina Kleege's Blind Rage: Letter to Helen Keller, and the excerpt is Helen in Hollywood acting in a little known film about her own life.

Passing on the meme plague, I tag Bint of My Private Casbah, Thistle of Thistle in Vermont, and Grace at What if no one's watching?

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?

Carnival reminders

In case you missed it, the Fifth Disability Carnival is out over at Planet of the Blind. The topic is disability and travel, and the variety of stories about get-around adventures is fantastic.

The next disability carnival will be at The Life and Times of Emma on Thurs., January 11, with the submission deadline presumably Monday, Jan. 8. The theme for Emma's rendition of the carnival is disability and relationships.

If you really want to plan ahead, the Seventh Disability Carnival is expected to be hosted by Museum Freak at Take Me to the Source of Chaos, and if I recall correctly, she's hinted somewhere (can't remember where I read this) that her chosen theme might be disability and technology. MF, correct me if i am wrong. The deadline for this should be Mon., January 22, if my calendar has it right.

The next Carnival of Feminists is coming out this Wednesday, Dec. 20 at The Imponderbilia of Actual Life. There's still time to get submissions in by tomorrow (Tuesday) on the topics of feminism and parenting or women in history.

The most recent Change of Shift -- a nursing carnival -- is up at Protect the Airway. My recent post "Last Year" is over there with other interesting stuff. Some of it's very medical, and from a medical professional point of view, but there are posts from the patient/client point of view as well.

Tasered, trampled and beaten for being disabled

These are three recent stories, one from Pontiac Michigan, one from Gaza, and one from St. Paul, Minnesota:

"Arrested for epilespy" -- Not just arrested, but tasered for having a seizure.

"Trampled because he could not hear" -- Trauma for a 12-year-old deaf boy in Gaza.

"Arrested after running a red light" -- Deaf Minnesotan Doug Bahl went missing when arrested because he was given no access to TTY phone or email to contact family or a lawyer. He alleges he was beaten without cause, as well, and 16 police officers are being investigated.

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

Saturday Slumgullion #21 -- Currency Edition

The original news from AP via CBS News: In late November, a federal judge ruled that United States paper currency discriminates against blind people because different denominations of bills are impossible to tell apart without vision or some other assistance.

"It's just frankly unfair that blind people should have to rely on the good faith of people they have never met in knowing whether they've been given the correct change." --Jeffrey A. Lovitky, attorney for the plaintiffs in the lawsuit

This week, the Bush administration filed an appeal, stating (among other things) that blind folks can use credit cards if they want better control of their money.

Our Money Too, an organization supporting the change of paper currency debunks some myths about the process and its effects. Here's one I hadn't thought of myself:

Myth No. 5: The issue of tactilely discernable currency is a "distraction" from important issues impacting blind people.

• Tactilely discernable paper currency will increase employment opportunities for blind and visually impaired people by affording them greater access to jobs where the handling of cash is an "essential function" of the job.

• Younger blind and visually impaired Americans will have an easier time finding work in the retail sector-an industry where many young people get their first work-related experience.

• Improving blind and visually impaired people's access to a wider variety of jobs is especially important considering the fact that between 55% and 60% of visually impaired people of working age and 70% of working-age people who are legally blind remain unemployed, according to the most recent statistics from the American Foundation for the Blind.

Joseph Shapiro's NPR report on some blind people who don't feel money redesign is necessary. It's audio, but there are also images of various foreign currency that does accommodate blind people's needs at the link.

An article in the Christian Science Monitor:

Surprisingly, the ruling was not universally embraced by the more than 10 million blind and visually impaired people in America. While few deny that having differentiated bills would make life easier, some say the lawsuit sends a message that the blind are helpless. Opponents also say it detracts from other problems blind people face, such as unemployment and lack of Internet access.

A statement against currency redesign from the National Federation of the Blind:

The National Federation of the Blind believes that with training and opportunity, blind people can compete in the world with only minor modifications. The American Council of the Blind, which brought the lawsuit against the United States Treasury, promotes the view that the blind are unable to compete unless the world is modified dramatically and specifically for blind people, and that the blind must be made objects of care and pity rather than equal participants in society.

An article from the Press-Enterprise:

"I had a friend who took out a $100 bill thinking it was a $10, and paid for a cab. And the driver kept it," said Shannon Burke, a mostly blind La Quinta resident who teaches along with Davies at the Braille Institute in Rancho Mirage. "If we had some sort of way to differentiate, that wouldn't happen."

At the Howard County Maryland Blog -- "Blind Money and Wasted Resources" questions the Bush administration's assertions in its appeal of the judge's ruling.

At Majikthise, Lindsey Beyerstein writes about vending machines and the government's moral imperative.

Kathy Podgers at From the Port comments on the position of the National Federation of the Blind.

The ruling debated at Overlawyered.

At Speak Up, an unlikely but creative solution: smell-o-cash.

David Gates at Growing Up with a Disability asks "Why can't we get it?"

At Blind Chance, David Faucheux on changing currency as an "accommodation."

At The Blind Bookworm Blog, Kestrell comments on the currency ruling and on comments to her opinions.

And, at The Volokh Conspiracy, an examination of the ruling and what "meaningful access" means when talking about currency. Comments are interesting -- if infuriating -- too.

Because conservatives are using Judge Robertson's record as a reason this ruling is faulty, here's the Wiki on him.

For the curious: this is an electronic money reader. Notice it's not currently available until March of 2007, and that it costs $270.

This week at the Gimp Compound

It's been busy around here. On Monday I spent time with four new nurses who will be helping me out. It's been hard for the home health care agency to find them and my parents have spent about four sleepless nights per week for the past two months taking care of me because of the shortage in medical professionals required for state funding of assistance to a vent user. (How's that for a confusing run-on sentence?)

Two of these nurses I met a couple weeks ago and they worked actual shifts where we were adjusting to each other and they were still learning the routine. The other two nurses dropped by for the first time ever, and one of them shadowed another nurse around the house for a couple hours to start learning what the job entails. These new people were in my house and watching me or caring for me in every daily situation from 8 a.m. until about midnight, which was mentally exhausting even though they all seem like competent women who will eventually fit right in.

Tuesday I had a doctor's appointment that consisted partly of getting my primary's script for various things I having the nurses do or not do that need to be medically official. This too, is to satisfy all the state departments and supply and insurance companies that insist on being up in my life. This is the price I pay for not being able to afford severe disability myself.

I did also get weighed, which requires some sort of equipment that accommodates a person who cannot stand. (A chair with a scale attached isn't a complicated idea, but most clinics don't have one so I have to visit the ICU and lay on a hospital bed with a scale built in.) Good, good news there, and I'll write on that separately.

Wednesday I went shopping for the first time since I was sick well over a year ago! Long before I went into the hospital I was ill enough to not go anywhere for fun, so this was a big, fun deal. Yeah, I've been to Target a few times since coming home, always after local doctor's appointments. And I have eaten out and browsed a few places during trips to the Twin Cities for parts replacements events. But I haven't gone anywhere just for the fun of it since 2005. So Wednesday was fantastic!

I went with my sister and a nurse I've employed since I came home last March, and I learned something new about myself during the course of the day. Since I first became visibly disabled around about age twelve, I've always been hyper-aware of disability as a public spectacle and performance. That is, I've always known people are curious and watch, and until now I've never shaken the self-consciousness that is part of the invasiveness of physical difference.

Now, apparently, I no longer give a damn. I'm more visibly interesting than ever, of course, with the puffing vent and tubes coming out of my neck, and I still have to manage interactions caused by public curiosity, but I don't feel vulnerable to other people's gaze in the way I always have. I'll probably write more on this as I think it through.

While at a bookstore (!) looking at a table of fiction, I turned and found a man standing right next to me. Caught staring, he was quick: "I was just admiring your chair," he said.

My chair is hardly the most interesting thing about me, as noted above, but I thanked him and edged my scooter forward a bit. From behind me now, he asked some weird technical question that proved he is probably a medical professional of some sort and was likely admiring my small laptop-sized vent, which even the highly-skilled respiratory therapists at my rehab hospital don't normally get to play with in the vent-users wing where they work. It was surely professional curiosity, and he asked something about whether it provided "oxygenation blah-blah-blah."

He was behind me and I simply shook my head and that was the end of it. But I was thinking, "Dude! I'm in a bookstore for the first time in forever! Look! A new print edition of Pride and Prejudice! Gabriel Garcia Marquez has a new book out! Let me fondle and feel the joy!"

Lunch was T.G.I.Friday's because I wanted a massive menu of cheesy or spicy or breaded and bad-for-me foods. Curiosity at the restaurant too. Did I imagine a couple people pondering for the first time how a woman with a hole in her neck at the next table would affect their appetite? I don't think so, but the difference is I didn't care.

Have I mentioned that I've been speaking now for about two months? The quality of my voice varies but I am able to leave the trach cuff loose enough that I have the constant capability and almost never write notes to communicate anymore. Out shopping, talking, eating -- a tremendously big deal.

Meanwhile, the past two nights have been spent with a hesitant new nurse, so I've felt "on the job" even while sleeping, and I'm pretty tired. But it's been a good, busy week.

I completely missed out on the latest Disability Carnival which is up today over at Planet of the Blind. Stephen and Connie have done a fabulous job and I can't wait to visit all the links.


For those who need the description: The photo above is of my portable vent where it is mounted on the front of my scooter, with the control box of my scooter in the foreground since the picture is taken from my point of view. Hanging from the handlebars is an ugly but functional homemade bracelet that holds the wedge for getting the circuit (vent tubes) disconnected from my trach for suctioning or getting dressed. The wedge looks like a large flat white forked-shaped tooth and because my sister and I are nerds and love the movie Dune, we call it "the tooth! the tooth!."

Bob Sampson RIP

To be honest, I didn't know about Bob Sampson until my sister sent me this link, but he was a remarkable man who died at age 81 this past week. The NPR audio is a bit less than 5 minutes long and worth the time to hear.

For the hearing impaired: I don't know how to get access to a transcript of this or other NPR news except to pay for it. Anyone with better knowledge, please let me know so I can pass it on when I link to audio.

Saturday Slumgullion #20

Three Guardian articles from the last two weeks -- 1) Identity crisis: Is the disability movement headed in the wrong direction? 2) Disabling the past: A look at the Middle Ages 3) The closed ward: The illogical world inside a psychiatric ward

The New York Times article, "Wanting babies like themselves, some parents choose genetic defects," looks at preimplantation genetic diagnoses that is used to favor embryos with specific disabilities. While the article itself isn't exactly even-handed or disability-positive, the comments following it are simply hostile toward disability -- genetic defectives, in the article.

New York's North Country Public Radio has a "People First" Readers and Writers on the Air series, a more literary continuation of their award-winning "Disability Matters" series from last year that included interviews and documentaries about the lives of disabled folk. Check out the audio archives with Stephen Kuusisto and Reynolds Price. Upcoming programs feature Nancy Mairs, Temple Grandin and Michael Berube.

The Hamilton Spectator article "Poisoned Lives" reports on the radioactive land Navajo's on a Utah reservation call home:

In every corner of the reservation, sandy mill tailings and chunks of ore, squared off nicely by blasting, were left unattended at old mines and mills, free for the taking. They were fashioned into bread ovens, cisterns, foundations, fireplaces, floors and walls.

Navajo families occupied radioactive dwellings for decades, unaware of the risks.

Over the years, federal and tribal officials stumbled across at least 70 such homes, records show. The total number is unknown because authorities made no serious effort to learn the full extent of the problem or to warn all those potentially affected.

The November issue of Perspectives Online, the online journal for the American Historical Association, includes a forum on disability history.

Stuart Hughes, BBC producer and blogger at Beyond Northern Iraq, who lost a leg while covering the war in Iraq is the subject of the BBC News article "Bionic man."

Autism Diva on the recent Newsweek cover story on autism.

Carnival round-up:

Deadline for the next Disability Carnival is Monday, December 11. The carnival will be up at Planet of the Blind on Thursday, December 14.

The latest Carnival of Feminists is up at Diary of a Freak Magnet.

Grand Rounds

Change of Shift

Corbet on nursing homes: Embedded

From Tim Gilmer, the current editor of New Mobility magazine:

Exciting news: a well-known magazine that claims to have the "world's largest circulation" is publishing a story written by New Mobility's late editor, Barry Corbet. Two years after he died peacefully in his home on Lookout Mountain Road, surrounded by family and friends, Barry will have his final say on the disability community's most vital issue. He will carry a familiar motif of ours to the masses -- "our homes, not nursing homes" -- and he will do it as he always did, with well-chosen words and images, deft analysis, and a heart made for understanding sometimes-contradictory human behavior.

Here's the article in the AARP's magazine. It's a must-read.

A tease:

I pulled every string to avoid going to a nursing home after surgery. I wanted to go to a rehabilitation facility. But eventually we all get to a point where our strings aren’t enough. Most people with longtime disabilities are terrified of nursing homes. Many of the young disabled arrive on one-way tickets and spend years or decades attempting to make beginnings amid people occupied with endings. Nursing homes are environments of isolation and disempowerment. They dictate when to get up, when to go to bed, when and what to eat, when to take showers and who will help, and when and if to leave.

The disability-rights movement resists. “Our homes,” we chant, “not nursing homes.” But living with a disability at home takes nerve, know-how, and resources: resources the movement is trying to build but that aren’t yet adequate for most. But too many of us languish in nursing homes until the desire to live in the outside world evaporates. We become lifers, sometimes unable even to get out of bed. It’s not going to happen to me, I tell myself. I’m too well informed. Too proactive.

And:

For 35 years riding a wheelchair has been a distinguishing mark of my identity. In the group photos the wheelchair is what makes me easy to spot. Not here. Here my persona is preempted by all these stupendously old women—there are very few men in the long-term care sections—who create gridlock in the dining room and accidentally lock wheels passing one another in the halls. Practically everyone’s in a wheelchair, but I’m the only one not new to wheels.

Wheelchairs are engines of liberation to me. They enable me to go where I want, when I want. This place reminds me why nondisabled people think they are tragic. In the custodial sections residents are propped up and seat-belted in their chairs, left with nothing to do but the impossible task of getting comfortable on old, unupholstered bones. Their heads hang down and they wait, their chairs no more than movable restraints.

Last year

My motivation to blog has been limited lately. I think this is related to an on-going preoccupation with what my life was like last year at this time and a conscious effort to appreciate my current freedom (relatively speaking) and soak up the holiday season for all that it is and can be. Precisely one year ago, I was being tranferred from the ICU of a major Twin Cities hospital to the vent-users wing of a rehab hospital. I was a quarter of the way into my 4-month hospital stay.

Besides all the frightening aspects of my medical condition at the time, this move to a rehab institution was a terrifying change because I was leaving behind every medical professional who knew specific details about my care that aided in comfort and minimized pain. I was gambling in my choice among several local rehab institutions I knew very little about. I was counting on all medical records being tranferred with accurate information intact. And, I was leaving a fantastic and motivating physical therapist for unknown replacements whom I worried could never compare to the woman I'd been seeing daily.

I ended up at a great institution full of compassionate, dedicated and very humane people. I was brought there in an ambulance by some guys who could easily start their own comedy act. The broken hospital bed I was put in was quickly replaced with a better one, and my rehab began again. Looking back, things went remarkably well, though there are the inevitable -- and important -- gripes I have with aspects of institutional care. I've blogged about some stuff and I'll blog about more yet.

But what's most on my mind these past weeks are the people, the specific individuals I relied upon at these institutions to literally keep me breathing. When I think back, I'm overwhelmed with gratitude for their kindnesses and awareness of me as an individual lying in that bed.

There was my primary doctor at the local hospital who announced to her colleagues within my hearing that whatever came next was entirely up to me because I was "in charge" -- a declaration that no disabled person afraid of losing her autonomy in a medical emergency can take for granted.

There was the student doctor in ICU who took the time to soothe my concerns about possible interactions between painkillers and my neuromuscular disease.

There was the respiratory therapist who gambled wrongly about my ability to breathe on my own, yet returned to my bedside after the trauma of reintubation to cheer me on for whatever came next.

There was the respiratory therapist I recall through a mid-night narcotic haze because he skillfully eased my breathing like noone else could. When I was still panicky and gasping despite a clearer windpipe, he noted with quiet humor that I could "just breathe" if I only tried.

There's the nurse who gave me courage on one of my darkest days by whispering in my ear to not give up.

There's the nurse who noted I enjoyed All My Children and put a note on my wall encouraging anyone around at noon on weekdays to tune my TV in. Maybe it seems silly, but it was a comforting routine amidst the pain and helped insure one small desire of mine was noted every day.

There's the busy doctor who bought me an audio book of Zora Neale Hurston's Their Eyes Were Watching God so I would have an activity while lying endlessly in bed.

There's the IV nurse who worked on replacing my PICC line (I had five in four weeks) while I lay there and leaked nonstop tears. Before he left he silently wiped my eyes with a compassion that makes me want to weep remembering it.

There's the young nurse who cheerfully called out "Good job, Kay!" everytime she helped me off a successfully-used commode or bedpan.

There's the nurse who checked in on me one evening even though I wasn't her patient in order to ensure that I'd gotten my weekly shampoo.

There's the male nurses' assistants that helped me with the most intimate tasks while maintaining a respect for my modesty and humanity -- not just toileting, but bathing, hairwashing, eating, and lying comfortably.

There's the nurses' assistant who couldn't find my Pizza Goldfish so he surprised me with some other munchies from some vending machine.

There's the nurse who made a point of dropping by with her big floppy puppy over the weekend.

There's the recreational therapist who saw the morning staff were very busy and hung around to feed me breakfast when I still needed the help.

There's the nurses' assistant who shared with me the concerns for her young learning disabled son.

There's the nurse who never once mentioned that her young son was very sick with cancer.

There's the respiratory therapist who automatically knew and understood my desire to learn about all the equipment I use. He'd explained a new humidifier on the vent to my parents while I'd still been in bed and unable to see what he talked about, but he made a point of coming back to it when I was up in my chair.

There's the doctor who kept popping into my room to watch and share the finals of the women's Olympic figure skating competition with me. We rated the costumes and the skating together.

There's the nurse who bought me a little squooshy pillow which I still use every night.

There's the chaplain who gave spiritual comfort by reading poems from one of my books to me. She was at ease with the speechless vent-user and good at sharing a laugh with my parents too.

There are three people I didn't like very much who each greatly humbled me by saying they would miss me greatly when I went home because of my character and personality.

There's the housekeeping guy who unwittingly made me laugh every day with his singleminded thoroughness in dusting the clock and picture frames.

There's the person who called me friend and trusted me with personal news no colleagues knew.

There's the therapy assistant who helped me exercise my limbs while we chuckled through each morning episode of King of the Hill.

There's the respiratory therapist who saw my postcards and we discussed a mutual desire to visit Barcelona, Spain for the incredible architecture.

There's the student nurse for whom I was the very first patient and her gracious way of asking for input to help her serve me and learn worried but touched me.

There's the newly graduated nurse whose error resulting in my trach being pulled completely out has provided me with endless confidence at home because I experienced that emergency under the safe care of the respiratory staff and, thus, learned for myself about worse case scenarios and that I can handle them without panicking.

There are the many people who have immigrated from far away countries and shared stories of their homelands, cultures, ethnic foods, and personal immigration struggles that continue to impress and inspire me.

There's the nurses' assistant who gave me a photo of her youngest daughter -- that child easily wins the award for baby with the chubbiest and most tweakable cheeks ever seen.

There's the social worker who provided excellent family support when the insurance company was trying to institutionalize me in a nursing home.

There are the people who became my friends and I meant to email or meet with more often, but found I missed all of the above professionals so desperately when I went home that I needed to be strong and focus on my life and recognize that I'd hopefully never see them in rehab on a daily basis again.

I haven't mentioned anybody more than once above and I haven't mentioned dozens of other folks who touched me as well. I hope they are all healthy and well and I hope others who must spend the holiday season alone in a hospital bed -- in ICU, rehab, nursing home or any institution -- receive as much compassion and companionship from the professionals who care for them.

Things that crack me up, #15

A google search leading here: "post dramatic stress."

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International Day of Disabled 2006

December 3 -- today -- is the International Day for Disabled Persons as declared by the United Nations some years ago. At the very least, the declaration obligates countries and organizations around the world to take note once a year of the state of disabled persons in their midst. Here's a sample of that news:

From The Jerusalem Post: Disabled Arabs suffer extreme difficulties. Most notably, the women, of course:

Arab males with disabilities face extreme difficulties, the study reported, but women with disabilities are socially isolated, unable to marry and, in many cases, confined to the home by their own sense of shame, social pressure and the family's reluctance to be seen with them in public.

"Some of the women with disabilities are illiterate, which limits their access to information and increases their dependence on relatives.

Among Beduin women in the Negev who have disabilities, the situation is even bleaker," said the report.

"The situation with disabled women in the Arab sector disturbed me every time it came up," Avital Sandler-Loeff, who authored the report along with Yiffat Shahak, told The Jerusalem Post in an interview. "Women with disabilities are forced to stay at home and are really not involved at all in the community," she said.

A little less balanced report (italics mine):

Arab children more likely to be disabled

The proportion of children in Israel's Arab community who are blind, deaf or have physical or developmental disabilities is double that of the Jewish population, according to the first report on disabilities in the Arab population in Israel. The report is being released today by the Joint Distribution Committee-Israel in honor of International Day for Persons with Disabilities today. The authors attribute the high incidence of disability to the high rate of inbreeding, genetic diseases, childbearing at an advanced age and a high incidence of accidents.

"Inhuman treatment" of the disabled in rural India:

Girdher says, cases of physical abuse of the disabled are rampant in rural area citing cases where a visually challenged girl was raped in Dahod and another woman with visual impairment in the same district was rejected by her physically challenged fiance.

Also, chaining physically challenged people is common in Unjha and Makhtupur, says Girdher adding that in some other areas like Chandroda, polio patients are called “mastans” and revered by family with the belief that the person has absorbed all the ill fate of the family through his disability. “During our study, we have also come across a number of mentally challenged people who have been abandoned by families near Piradata Mazar in Mehsana district.” These are made to take mud baths by the people of the mazaar, he says. “After a thorough situation assessment in districts of Gandhinagar, Anand, Banaskantha, Sabarkantha, Mehsana, Anand, Baroda, Katch and Surendranagar, we realised that while on one hand there is very low level of awareness regarding issues pertaining to disability among both the civil society and the health workers, on the other hand, stigma attached to disability is proving a great hindrance in their rehabilitation. For many, disability is only orthopaedic. They are not aware of other forms,” he says.

Angola's Social Welfare minister pledges to help disabled folks reach fuller partnership in society. This could be a news report from the U.S. or anywhere, but it's not easy to find Angolan news on the disabled. Also, Malta.

In Islamabad, Pakistan, a reporter gamely notes that this year's International Day theme is "E-Accessibility," which is certainly important for any person to be part of this global society, but it also highlights the enormous disparities when life is so direly about survival for so many disabled people around the world. Likewise, in Kuala Lumpur, Malaysia:

E-Accessibility is the theme for IDDP 2006 but here in Malaysia, if the disabled simply have basic accessibility, they will be genuinely delighted and the nation will be one step closer to eventually being a developed country.

A Kuwaiti report on governmental observance of the day reveals typical tensions between focus on charity and a more evolved understanding of what disabled people need from their communities.

In a poignant report on war-caused brutalities and disability in Sierra Leone, a Reuters report shows the connection between violence and disenfranchisement from society:

When Bambay Sawaneh came face to face with the man who had ordered rebel fighters to cut off both his forearms three years earlier, he asked a baying crowd not to lynch his attacker.

"I told the people if they kill him it will not make my hands come back," said Sawaneh, who recognised the man during a physiotherapy session to help him use prosthetic limbs in Sierra Leone's capital, Freetown.

In what became a trade-mark mutilation during the country's 1991-2002 war, the rebels first tried to cut off the then 15-year-old Sawaneh's arms with an axe. But the blade was too blunt to cut through the flesh and bone, so they resorted to using cutlasses -- local parlance for machetes.

"I have forgiven him," Sawaneh, now 22, said of the man he once swore to kill, wiping sweat from his brow with his left stump after a bible class in the steamy coastal city.

Thousands like Sawaneh have learned to come to terms with the horrific acts inflicted on them and their families by the notorious Revolutionary United Front rebels, who financed their campaign of murder, rape and mutilation partly by the trade in gems that inspired Blood Diamond, starring Leonardo DiCaprio.

The Christian magazine Inspire talks about some success in changing attitudes in the Middle East and North Africa.

In Goa, India, an article on how attitudes yet need to change.

The Palestine News Network reports on the toll the ongoing struggle with the state of Israel puts on people living in the Gaza Strip:

And one is hard pressed to find a Palestinian man without a limp, or a bullet or shrapnel lodged somewhere in his body, or an arm that was broken and pushed back into the socket without medical care. And then there are the generation whose bodies were stiffened and twisted in their formative years. Although functional, there are those who after spending their “seventeenth year in a cupboard” in Israeli prison as an Aida Refugee Camp man did, do not move properly and are in constant discomfort.

The Rehabilitation Sector of the Union of NGOs issued its annual statement on Saturday. “The disabled Palestinians affected by such circumstances is the largest of all other sectors. More than 6,000 of the Palestinians injured during this Intifada are suffering from a disability.”

Lest we think the disability divide is mainly in developing countries, Canada's Toronto Star reports on "frightening gaps" in the quest to make disabled people more equal in society:

This week, the Ontario Association of Food Banks reported that people with disabilities, who represent 12.4 per cent of Canada's population, make up more than 20 per cent of those who need their services.

Not surprising perhaps when you consider that the employment rate for people with disabilities is about half that of their non-disabled peers, another frightening gap.

An excellent report from Jakarta, Indonesia, discusses the link between disability and poverty:

The World Bank estimates that 10-12 percent of the world's population, or over 600 million people, have some form of disability. Some 80 percent of them are living in poor countries (WHO, 2006).

People with disabilities are highly over-represented among the poor; about 82 percent of them live below the poverty line. They have varying access to networks and resources and economic power. Their disabilities don't only affect them, but also their families, social networks and their general environment.

Poverty is considered both a cause and a consequence of disability. Poverty is a cause of disability because the poor often lack resources to prevent malnutrition, and access to adequate health services that may prevent disabilities. Poverty is a consequence of disability since people with disabilities often lack access to education, health services and income generating activities and are often deprived of social and economic rights. It is estimated that only 2 percent of people with disabilities enjoy adequate access to basic needs. These factors contribute to high levels of vulnerability and social exclusion, and preserve the vicious circle between disability, vulnerability and poverty.

In Beirut, Lebanon, planned celebrations were cancelled because of the "volatile situation there," but discussion of the social vs. the medical model of disability was nevertheless discussed, as well as the war's impact on disability:

The World Health Organization asserts that 10 percent of Lebanese are disabled. Additionally, 83 percent of all disabled are unemployed - almost five times more than the able-bodied rate. Six hundred were disabled in this past summer's war, and since the cessation of hostilities cluster bombs have disabled a further 150 civilians and continue to mutilate the limbs of more.

"Is it too much to ask to go to school, work and live a dignified life?" Laqqis asks. "I know that there are too many problems to worry about in the government but we shouldn't always be pushed to the end."

Disabled folks participated in a Lebanese marathon Sunday and said it was an example of social equality that they were part of the event.

In Cyprus, disabled people staged a protest to demand their rights:

The Cyprus Paraplegic Organisation yesterday held a demonstration outside the House of Representatives in protest against what they say is the failure of the state to recognise their rights and needs.

“Instead of celebrating International Day of Disabled Persons on December 3, we have decided this year to go ahead with this symbolic demonstration to express our displeasure at the way people with heavy disabilities are treated by the government and the Parliament,” read an announcement issued by the Organisation.

According to the announcement, Parliament had rejected all of the organisation’s suggestions during the recent alteration of the Law for Public Benefits and Services, while the government has repeatedly ignored disabled people’s problems.

As for the United States, I couldn't find any actual formal celebrations or reports about this being a UN-declared day for disabled persons. Just a governmental press release sent out in advance.