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Disabled & Sick: We’ll Manage

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Don has Marfan’s syndrome. It’s a genetic condition that he was born with. It’s the cause of his height (he’s 6’10” tall, 2.09m), his overall build, the way his fingers are shaped. It’s also the cause of his intense chronic pain, his wheelchair use, and his risky heart condition. It’s a spectrum condition – some people don’t have the chronic pain, but do have serious issues with their eyes. Some people don’t know they have Marfan’s until they have an aortic aneurysm and drop dead at 22 with no warning. Don grew up thinking he wouldn’t make it to 25, and his 30th birthday is next month.

Don also has Cancer. His cardiac specialist noticed the lump in his thyroid last year, before his serious ear-related surgery [1. I like to joke about his having too many holes in his head, but it turns out the problems with his mastoid were so bad that he could have died from a brain infection. Don’s health is never having to say you’re exaggerating.], and the whole thing’s been weaving its complicated way through Nova Scotia’s health care system ever since. He had surgery to remove his thyroid in September, with a doctor who assured us not only that there should be no problems with his surgery [2. Don can no longer speak above a whisper.], but that he should fully recover in a week or two.

Don still hasn’t recovered from surgery.

My mental jury is still out on whether or not Cancer is a disability. I think Susan Wendall makes a pretty good argument for it, by talking about how people with Cancer go through both social stigma and a lot of pain of treatment, but I admit to not knowing anyone with Cancer who’s described it as a disability, and I’m big on self-identifying. In this case, though, I’m going with Cancer = sick, because it’s allegedly cured. Everything’s fine now.

Except for the bit where none of the doctors along the way have known how to deal with Don’s disability at all. It’s like they somehow missed “Disability 101” in Doctor School.

We had the doctor who decided to start bending Don’s fingers back with no warning, discussion, or permission, apparently just to see how far they’d bend back. How this is relevant to a thyroid consultation, I don’t know, but Show & Tell Marfan’s Syndrome is pretty shite behaviour when one’s waiting for a Cancer diagnosis. Similar stunts have happened so often – bringing in additional students so they get a chance to “see a classic Marfan’s Patient”, like he’s a specimen in a zoo, or having Don’s classic Marfan’s features pointed out and discussed at length, as though he’s not right there.

The technician who did Don’s chest x-ray (to make sure there were no clots of Cancer in his lungs) baby talked to him, we can only assume because of the wheelchair, since we haven’t been able to get anyone to actually acknowledge that happened, let alone that it was a problem.

When he went in for the ultrasound on his neck… Oh, gosh, where do I begin? With the wheelchair inaccessible waiting room (you can wait in the hall!), or the refusal to allow Don’s wheelchair to even be in the room when he was being examined? As though able-bodied people are asked all the time to leave their only means of getting away behind. Plus, you know, the refusal to believe either of us that it’s common for people to play Show & Tell Marfan’s Syndrome.

And then there’s Doctor Fail. Oh, Doctor Fail, I hate you so much. The fast recovery time you assured us would happen, even when we both emphasized how long it took Don to recover from surgery previously, because he has a chronic pain condition. The bit where you prescribed far too low a dosage of thyroid replacement medication for someone of Don’s size, to the point where his energy levels dipped so badly he couldn’t handle reading fanfic because the plots were too complicated for him to follow, and he couldn’t get out of bed at all. [3. The radiologist increased his dosage to five times the amount. That was weeks ago. He’s still recovering.] Or, hey, the bit where you insisted that all mailed-out appointments needed to be confirmed by phone – despite knowing that Don can’t talk on the phone anymore because of the damage your surgery did to his vocal cords.

The latest round of fail is the radiation therapy he needs in post-Cancer treatment. I don’t even know how to describe the level of care he will need for this. They will need him to come right back off the thyroid meds. They need him to not be within 6 feet of anyone for any length of time. They need him to shower every single day, and then clean the shower out immediately. They need every plate he touches to be washed immediately, and all of his clothing washed immediately after taking it off.

When Don tried to point out that this is not something he can do, even when his thyroid meds are working just fine [4. Don has a homecare worker because normal showering and the like isn’t something he can currently do without aid], the response was a very cheerful “Oh, you’ll manage!”

Y’all, we are not managing. I can’t tell you in words how much we are not managing.

If we were a household of two able-bodied people, these would still be problems, but they wouldn’t be as overwhelming and dangerous as they are. If we were both two people who didn’t have mental health conditions [5. Don has Chronic Depression/Unipolar Disorder something-or-other, and I have a diagnosed mental health condition that I chose to never speak of on the internet because even the comments here at FWD include people who have merrily informed one and all that women with my mental health condition are bad.] this might be a bit less dire than it is. But as it stands, this has become a very very serious problem, and one that the medical people we are dealing with seem completely unable to address at any level, or any point.

The latest, today, was the psychiatrist telling Don to just wait things out and see if the anti-depressant that hasn’t been working for months suddenly kicks in, so the suicidal thoughts and horrible guilt at “what a burden” he is (he’s not!) both go away. Like magic, I guess. Because it’s normal, I guess, to be depressed, disabled, and Cancerous, so we shouldn’t treat it.

Our family has been in a pretty bad state for months now, because of so many people along the way, including us, assuming we’ll manage, somehow.

The support services designed for families ‘dealing with Cancer’ are not designed to include families like ours. Don can’t leave the house much, because it’s winter, and uncleared snow can be a problem. I’ve been so swamped that I’ve been out of the house for 18 hours a day at least four days a week. Support groups and services don’t seem to consider ‘wheelchair’, ‘mental health condition’, ‘complicated family situation’.

And so, here we are. I don’t think this is some tiny crack we’ve managed to slip through, but a big gaping chasm that has a bridge that’s passable only if you’re “general population”.

I honestly don’t know what we’re going to do. I guess we’ll manage.

Quotation: Why We Do Disability History

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[I promise that I am so close to being done all this reading that there will soon be less quotation-posts, but I keep finding all these lovely words, and I’m very fond of them.]

Reminders of the immediate relevance of history to contemporary issues of disability confront us daily. In but the latest example, as we write these words [in 2001], the United States Supreme Court has accepted appeals from several states which claim that Congress exceeded its constitutional authority in imposing the ADA [Americans with Disabilities Act] on the states. Congress lacked evidence to prove that state governments had engaged in a historical pattern of discrimination against persons with disabilities, this argument claims in part; without evidence of state discrimination, the general government overran its jurisdiction. The essays gathered here indicate that evidence of discrimination against disabled people reaches well beyond our living recollection. Until we can document the past with the evidence and rigor that solid historical research necessitates, the absence of disability from our written history, its suppression in our formal collective memory, jeopardizes the current quest of Americans with disabilities for full citizenship. This history matters, and not in the abstract.

– Paul K. Longmore & Lauri Umansky, The New Disability History: American Perspectives, pg 14. Sadly, there is no limited preview of this book on Google Books, but Why I Burned By Book and other essays on disability, by Longmore, does have limited preview, and I love that book to pieces, especially the last essay.

Obviously I have quoted this for truth because I’m an historian and I’m often questioned on why I consider the history I do to be both political and activist in nature. And, this is (in part) why.

Quotation: “Disability & Sentimentality”

Quotations

When the disabled body and the handicapped self are inscribed as deficient and dependent, disabled people are aligned with other social groups perceived as needing supervision, assistance, and guardianship. The idea of autonomy and independence, central to most psychological definitions of healthy adult selfhood, is premised on the presumption of physical independence, of a self that embodied its own freedom in its very movements. In the absence of such bodily autonomy there is little basis for assuming any other forms of autonomy; hence disabled people who have limited independence of movement are also often subject to limited independence of decision-making and self-governance. Disability rights activists point to several important areas where the ideas of bodily-based autonomy have infringed on the basic civil rights of disabled people, including the right to make one’s own decisions about sexuality and reproduction, the right to equal access to education and employment, and the right to vote.

– Mary Klages, Woeful Afflictions: Disability and Sentimentality in Victorian America, 1999, pg 3.

Limited Preview of Woeful Afflictions is available on Google Books.

Quote: Not a lack

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It seems difficult for nondisabled people to write about disability without reflexively imagining what disabled people are missing or how difficult their lives must be. Rod Michalko, a sociologist who is blind, writes that sighted people typically conceive of “blindness in terms of ‘lack’-lack of sight. But this conception does not really help us understand what blindness itself is. It does not generate any curiosity about what blind people ‘see,’ since it defines reality in terms of the physical sense of sight …. Sighted people seldom question these preconceptions.” Stephen Kuusisto, a blind writer, tells of the expressions of pity he encounters so often on the street: “I want to take strangers by the hand and tell them there is no abyss.” Similarly, deaf people are relentlessly depicted in popular film as pining away their days regretting their inability to enjoy music (usually classical music, which one would think from these movies has a central place in most American households).

– Douglas Baynton, Review: Laura Bridgman and the History of Disability, Source: Reviews in American History, Vol. 30, No. 2 (Jun., 2002), pp. 227-235.

Quote: “Who are ‘the Disabled’?”

Quotations

The disabled, therefore, are not a tangible and unproblematic collection of people but, rather, a population that is assumed to exist, a category into which able-bodied people can slot others who pose a threat to their own normal view of the world and to those who inhabit it, and into which those who identify themselves as disabled can welcome those whom they see as suffering the same marginalization and oppression as themselves. The issue of whether signing Deaf people are a linguistic minority or are disabled, for example, has generated intense debate within both Deaf communities and among disability rights activists. The problem of identity as being either Deaf or disabled derives from the way a disabled identity encompasses an individuals’ subjectivity in the same way as gender or race. Seeking to move beyond this essentialist view of identity, many Deaf people are seeking alliances with disability rights movements to counter the essentialist view that people with disabilities are inherently pathological. Those people are actively involved in the achievement of rights of people who are disabled refer to those who bask in their normality as “TABs” – temporarily able-bodied.

– Damned for their Difference: The Cultural Construction of Deaf People as Disabled, by Jan Branson & Don Miller, pp xi – xii.

Recommended Reading for December 9

recommended reading

Colored Spade

Little black girls in small Maine towns never do. Little black girls with white parents in small Maine towns are just confused. And little black girls with mental illnesses and white parents in small Maine towns are very confused.

I still don’t know my first mother, but I would like to. I know she has mental illness, like I do. I know I have a sister. I’d like to know them very much. I feel lost, drifting. It doesn’t matter how much the polar bear loves the panda cub, the panda cub will still never be a polar bear, even if she tries to bleach away her blackness.

“It”

So, me and my aide were at the park with one of my dog-walking clients. This lady and her dog come in (we are the only people there) and naturally we start chatting because her dog and my client are playing. She directs all of her conversation to my aide, who says “EVA’S a dog walker and SHE sometimes comes here” etc.

Bearing Witness

This story doesn’t surprise me. I hear from families with children with disabilities and my nephew also has a disability that requires equipment. Claims are denied and families scramble to keep the child involved in the community, using whatever they can afford. As a child grows into adolescence, he/she may find himself/herself in the same situation as the Orlando youngster- using equipment designed for babies and toddlers even when it’s not medically necessary. (There’s an important distinction there- I’m not blaming parents for using suitable equipment for safety or medical reasons. ) It can happen to adults too.

Transcript: Autism Women’s Network interview with Kristina Chew: The ABCs of IEPs

Here’s a transcript of Sharon daVanport and Tricia Kenney’s interview with Kristina Chew about Individualized Education Plans (IEPs) for the newly-founded Autism Women’s Network radio show.

…
The Autism Women’s Network mission statement is: “To provide effective supports to autistic females of all ages through s sense of community, advocacy and resources.” We also want to let everyone know, too, that our radio show is going to be supportive of all people on the spectrum, and today is a really good example of that.

We have Kristina Chew as our guest today. Kristina is a professor at Saint Peter’s College, and I believe, if I’m not mistaken, Saint Peter’s College is in New Jersey….

Personal Experience from Kate, who recovered from Anorexia

I am Kate, 31 and in recovery from anorexia. My experience of seeking treatment has taught me that often you have to fight the system and keep persisting until your voice is heard.
I first sought treatment for anorexia when I was in the early staged of the illness, aged 17, back in 1995. My family doctor weighed me and put me on a course of antidepressants. He told me that even Princess Diana had an eating disorder and implied that it was simply a phase. I felt like a fraud as I’d gone there hoping for help with my eating disorder and received nothing but medication.

Over a period of a year I saw my doctor monthly to be weighed and each time my medication was either increased or switched. Unsurprisingly, the medication had little or no impact on my illness. Eventually I was misdiagnosed again, this time with Chronic Fatigue and referred to a specialist who gave me yet more medication and put me on a graduated exercise programme to rebuild my strength. Looking back it is rather ironic that the very treatment of exercise was prescribed to an anorexic and years later my exercise addiction landed me in the EDU!

Anna History Rants: Harlan Lane

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My name is Laurent Clerc. I am eighty-three years old. My hair is white, my skin wrinkled and scarred, my posture crooked; I shuffle when I walk. Undoubtedly my life will soon end in this time and place: 1896, Hartford, Connecticut. I spend most of my day sitting alone at my dining room window, looking at my orchard and remembering. I also read the paper and occasionally friends come to visit. I know what’s going on. Important people, distinguished gentlemen, are repudiating the cause to which I have devoted my life. Endowed with the sacred trust of my people’s welfare, they seek, without consulting us, to prevent our worship, marriage, and procreation, to stultify our education, and to banish our mother tongue simply because our way and our language are different from theirs….

– Lane, Harlan, When the Mind Hears: A History of the Deaf, pg 3.

I have issues with Lane. He outright states in his introduction that he made stuff up when he couldn’t find out what happened, and I feel he wrote well-researched historical fiction rather than an actual history book.

But still. Lane didn’t write the first book about deafness from the POV of actual deaf people (Lane is Hearing – he cites Jack R Gannon’s book as the first history written by someone who was Deaf), but he wrote the one that launched a thousand ships, so to speak. He challenged, quite viciously, the idea that deafness was something to be “conquered”, and argued that a deaf-focused history was necessary.
Continue reading Anna History Rants: Harlan Lane →

Recommended Reading for December 8

recommended reading

Human Dignity for People with Disabilities

You may remember that this past July, Susan Rice, U.S. ambassador to the United Nations, signed the Convention on the Rights of Persons with Disabilities on behalf of the Obama administration. The disability rights treaty is a comprehensive promise made by nations across the world progressively promoting the human rights of people with disabilities.

The convention is revolutionary. Last year, on the 60th anniversary of the Universal Declaration of Human Rights, ACLU Disability Rights Fellow James Felakos wrote that the convention describes disability not as “an individual’s condition but rather as the flawed interaction between that impaired condition and society’s lack of adaptation to it, departs radically from conventional thought and is a core concept of the Convention.”

Why I never expect to be right

And understanding language was only part of it. It seemed to me that everyone other than me was moving along to the pattern of music that I couldn’t detect. And that every time I tried to insert myself into the pattern, no matter how hard I tried the music turned dissonant and terrible and pushed me out again. So I would never have guessed that my ability to turn written into spoken words, or my general ability to find and memorize and analyze the world through patterns, had been impressive enough for a five-year-old to earn me a high score on a test that people believed all sorts of ridiculous things about. (Meanwhile the people who tested me thought those abilities meant so much that they would disregard my receptive language scores and all other scores that didn’t make sense to them. My guess is that my being white and middle-class also helped them forget.). I still remember the test and the manner in which I worked out the answers. I literally didn’t know the meaning of the word “test”. But my answers were apparently impressive for a five-year-old (not so much for a fifteen or twenty-two-year-old, but that’s another story.)

The Reformist The Radical

activists friends and i talk a lot about balance and energy. about how to work the system and how to do what we love (organize, create) but come to think about it, no, not everyone faces that problem. people who grow up as translators and bridge builders—folks who live in multiple communities, folks who had some privilege and were favored in some way by the system, mixed folks— are the ones who travel back and forth never knowing where they fit, what safe space looks like, when to switch up tongues. people say that both the reformist and the radical has to exist but no one feels the obligation to be both, to carry everything, like we do.

our communities fought so hard to be at the table, how could we not respect that & politely say no thank you to sitting there?…honestly our communities that we are working with don’t have the privilege for us to disengage, they need the resources, the funding, the connections that come w/ sitting at the table. (especially with disability and the daily things we need being so tied up in government). …we could spend a month with all our energy going to trying to fund something ourselves or we could use the dominant culture language skills we have to spend a day writing a grant application. …or these folks aren’t members of our communities but could be amazing allies if we put some time into it.

News:

Health Care Plan Could Cut Home Care

The impact of the legislation on Medicare beneficiaries has been a pervasive theme in the first week of Senate debate, which is scheduled to continue through the weekend.

Home care shows, in microcosm, a conundrum at the heart of the health care debate. Lawmakers have decided that most of the money to cover the uninsured should come from the health care system itself. This raises the question: Can health care providers reduce costs without slashing services?

Anna History Rants: Introduction

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My daytime work is as a Masters student in History, and I am writing my thesis on the history of disability and education. I don’t want to go into too many details, because my field is very small and I would like to one day be successful in it, so I’m trying not to leave too much of a Google-trail.

Anyway, I have been encouraged to post some of my thoughts about history & disability as I am working away at my thesis.
Continue reading Anna History Rants: Introduction →