Question Time is a series in which we open up the floor to you, commenters. We invite you to share as you feel comfortable.
Tell us about a positive experience you’ve had interacting with abled people.
Yearly Archives: 2009
Quotation: Why We Do Disability History
[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”
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.
The frustration of incremental progress
The place I work does a lot of trainings for other organizations on health care programs. A number of health care programs are available only for people with long-term disabilities, so the trainings always include a fair amount of discussion of what disability is and who is disabled.
My organization is relatively progressive and puts a priority on protecting vulnerable populations. We have a section of the training talking about the government’s requirement to provide translation and interpretation services for people who do not speak English. We discuss programs for minor children who want to obtain family planning or pregnancy services without their parents being notified. We highlight the special rules for homeless people to work around their lack of a fixed mailing address or phone number.
When it comes to disability issues, though, there isn’t always the level of awareness and sensitivity that I would like. Recently, I was sitting with two co-workers talking about potential interactive activities to add to the training. One co-worker suggested making a poster with photographs cut out of magazines that we should show to the trainees and ask them to point out who is NOT eligible for Medicaid (the U.S. goverment health program for very low-income folks).
“We can use the photos to show them that people on Medicaid aren’t just homeless people pushing shopping carts on the street,” she said. “And it’s also good to remind people that you can’t tell someone’s disability status just by looking at them.”
“Yeah,” responded another co-worker. “It’s always good to remind them that someone could have a mental health disability or something like fibromyalgia that you can’t see just from looking at them.”
HURRAH, I thought. People who are aware of these issues of disabilities that aren’t immediately apparent by looking at a photo. People who want to include this information in a training, want to highlight it with an interactive activity, to make sure everyone understands that. This is progress. This is positive.
“We could Britney Spears and Lindsay Lohan on the poster,” my co-worker continued. “Nobody knew how crazy both of them were at first! I mean, who would have imagined that they were so totally loopy and unhinged? They’re SO CRAZY!” And then she and my other co-worker laughed and laughed.
I froze. Do I mention that we don’t actually have access to their medical records or diagnoses so have no idea what’s going on with them other than what’s reported in the not-at-all unbiased mainstream media and gossip columns? Do I mention that if we go by what’s been reported, I have the same diagnosis as Britney and could be considered just as “loopy and unhinged”? Do I distinguish between drug and alcohol problems and mental health disorders? Do I argue that laughing at people with disabilities that way undermines the message they’re trying to convey with the activity?
I didn’t say anything. I’d already used up a lot of my “humorless” allotment arguing against using an example of a welfare recipient as a single mother with 11 kids so felt that to make any inroads on this issue, I’d have to disclose my own status, which I just wasn’t willing to do. So I let it go by.
Incremental progress.
Chatterday Open Thread.
This is our weekly Chatterday! open thread. Use this open thread to talk amongst yourselves: feel free to share a link, have a vent, or spread some joy.
What have you been reading or watching lately (remembering spoiler warnings)? What are you proud of this week? What’s made your teeth itch? What’s going on in your part of the world? Feel free to add your own images. (Anna insists that these should only be of ponies, but I insist that very small primates, camelids, critters from the weasel family, smooching giraffes, and cupcakes are also acceptable.) Just whack in a bare link to a webpage, please – admin needs to deal with the HTML code side of things.
Today’s chatterday backcloth comes via Epicute. The yellow icing, little black icing sunglasses and red smile, and red, yellow and orange gummy rays combined to make my day feel brighter. For a detailed recipe and instructions, check out Betty Crocker Recipes on flickr.
Quote: Not a lack
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.
Injury versus disability
I have an injury – animal bites on my face, forearms and hands from a skirmish with a feral cat outside my office building. I’ve got quite a black eye with puncture wounds on my cheek, so my injuries are immediately visible. I’ve also got severe swelling in my left index finger so I can’t bend it or use it for anything, and bumping it against something sends extremely sharp pains through my hand that last for about half an hour.
I am having a fair amount of trouble with it. I can’t open jars or plastic packaging or use a can opener. I can’t hold the steering wheel very well with my left hand. I’m right handed so I can still use a pen and hold a fork and spoon, but my typing is totally jacked up – I can use the other fingers on my hand if I keep the injured finger extended, but that makes my hand go in an unfamiliar position and the rest of the muscles start cramping and aching if I do it for long, making me rely primarily on hunt n peck typing with my right hand. (I usually type over 120 words per minute, so this significantly slows me down.)
When people observe or hear about these functional impairments, they keep saying to me “oh well thank goodness this will heal. Imagine how it would be if you permanently lost the use of your finger!” and “well at least your face won’t be that wasy forever. Let’s hope it doesn’t scar.” They seem to regard these temporary injuries as a disability simulation of sorts and are reassuting me that I won’t continue to be this impaired or have this reduced functionality only because my injuries will heal.
I, on the other hand, feel that if these injuries were permanent disabilities, I’d have a lot easier time dealing with them. The problems I’m having are largely because it is a new situation for me and my habits and unconscious behaviours are all based on my assumption that my left index finger works fine. I haven’t had any time to develop the mental awareness or the physical abilities to compensate for the problems with that finger – if the other muscles in my left hand were more used to typing without that finger, I’m sure I’d be able to type more quickly and without as much pain in my left hand. Similarly, if my brain could remember that bumping left index finger leads to extreme pain, I wouldn’t have banged it against the car door every single time and I’d buy a purse with more organization capacity so I didn’t have to dig through it with both hands to find anything.
This isn’t to say that having this injury be permanent wouldn’t have long-term effects on my functional capacity. It just means that the functional effects of my temporary injury are in no way indicative of my functioning or my abilities were this a permanent disability. And that having this injury doesn’t teach me anything about what it would be like to have this disability.
The one aspect that has been eye opening for me is the demonstration of how entitled people feel to talk to you about visible injuries or disabilities. My finger isn’t that noticeable and I’m wearing long sleeves because of the weather, so only my facial injuries are visible – and boy are they visible. Even when wearing sunglasses to cover the worst of the bruised and swollen eye, the puncture wounds on my cheek are prominent. And in the day and a half since I was injured, I have been asked to explain “what’s up with my face” by virtually every stranger I’ve encountered. So much so that I’ve already started making up stories (my favorite: “I was being attacked by a vampire but I managed to deflect him so he bit my cheek instead of my neck.”). The feeling that my body is fodder for them to gawk at and demand explanations for is new to me, as my disabilities are usually not visible and I’m used to passing in public. While I don’t pretend this temporary experience in any way lets me know what it would be like to live as a person with a permanent visible disability, this is the only aspect of my injury experience that I feel is at all relevant to understanding the experience of disability.
Recommended Reading for December 11
Note that a number of blog links, media reports, and the comments therein may contain questionable language and/or clear descriptions of abuse.
A comment on Meloukhia’s post on Glee’s “Hairography” episode:
Coming from a hard-of-hearing family, I was excited to see the deaf choir perform! I thought about going to find my little sister, who is profoundly deaf. As it is, I didn’t have to bother getting up. Why? Because the episode wasn’t closed captioned.
I’ll let that sink in. Their oh-so-inclusive episode about some Very Special Disabilities…was unwatchable for people with the exact disability being discussed.
Some of you may be wondering when we’re going to write about Glee, since the midseason finale just aired. Rest assured that Anna and meloukhia are currently working on a monster post (in several parts!) which will hopefully go up in a few days.
Fat Nutritionist: Stairway to Health, or, Let’s Judge People for Not Taking the Stairs.
The life in downtown Toronto is just plain hard on me, and clearly, the stairs are not helping my heart. So I try to make it at least a little easier on myself by taking an elevator or escalator when convenient. I like to think of this as having compassion for my limitations, though I admit, I am often embarrassed to be standing by the elevator — even though I am registered as disabled at my school, and have to wear special orthotics in my shoes and blah blah blah. I am still embarrassed because I know what people must be thinking of me — the fat lady taking the elevator instead of the stairs.
Lennard Davis in the Huffington Post: “Let Actors with Disabilities Play Characters with Disabilities” via Media dis&dat:
There is a very high frequency of Oscar winning films that depict disability, but very few of those clutching the golden statues are people with disabilities.
There is a standard response on the part of Hollywood and Broadway when this issue is raised. The producers will say that they “tried” (if they tried at all) to use disabled performers but that they couldn’t find anyone good enough to play the part.
BBC: Bollywood shines spotlight on health disorders
Amol Gupte, writer of Taare Zameen Par, said he made the film primarily “to take a re-look at parenting”. […]
Mr Gupte, who says he makes films for “social change and sensitisation”, maintains dyslexia is not a disability but a neurological difference. “It is called the gift of dyslexia. Problems are not in children. Problems are in the system.
Leader Messenger: Residents block disabled care home
A group of Hope Valley residents is fighting a plan to convert the old Tolley winery into a home for people with severe physical disabilities.
In submissions to Gully Council, residents say SA Care’s bid to house six disabled people at the John Ramsay Cct property would attract criminals seeking drugs, increase traffic, noise and parking problems, and bring down their property values.[…]
In their submission to the council, Mr and Mrs Evans wrote: “The Pedare Estate is a quiet residential estate and let’s not upset (its) character and tranquility. The estate has one entrance/exit and is not designed for a commercial venture.”
They also said the clients of a home for the disabled would likely require medication, which could attract criminals to the area seeking drugs.
Sydney Morning Herald: Qantas refused guide dog and stranded blind woman
Qantas left a blind woman distressed and stranded interstate at night because the airline would not allow her guide dog on a flight.
Qantas is not alone. Tiger Airways two days earlier baulked at letting the same woman fly with her guide dog.
CBS Chicago: Family Sues Over Alleged Police Beating Of Teen
A Chicago family wants justice.
They claim a Chicago police officer burst into their family-owned restaurant and beat their son bloody, despite being told that the teen has autism and special needs.
Book Review: Bright-Sided: How Positive Thinking Has Undermined America by Barbara Ehrenreich
A word of caution: This review is going to be quite short, as I have been struggling with “getting words out” for the past few days. Regardless, I think this is an important book, and might be of interest to my fellow FWD-ers (bloggers and commenters!).
I touched upon the whole positive thinking movement (and why it offends me) at this very blog a while back; I’ve long had problems with the “Just think POSITIVE!” suggestion and attendant movement, and one piece that really got to the root of things, at least for me, was Ehrenreich’s 2001 essay, “Welcome to Cancerland,” which is about how positive thinking–bejewelled and be-ribboned with a heaping helping of traditional femininity and stereotypes about women, and particularly women who have survived breast cancer–has, for lack of a better word, swallowed the breast cancer “awareness” movement. [The essay is available at her website.] A revised version of the essay appears as the opening chapter to Bright-Sided, and Ehrenreich adds just enough salient facts to make reading the newer version worthwhile and not at all confusing to non-sciencey types like myself. (Ehrenreich has a PhD in Cell Biology.)
That said, the remainder of Bright-Sided proved to be a fast, engaging read. In fact, I wish it had been longer, and one chapter that could have used an expansion was the closing chapter on positive thinking’s effect on the recent U.S. economic crash. The book is also extremely U.S.-centric, but since positive thinking is one of those things that seems to have really taken flight in the North American consciousness, this is not particularly surprising. Unfortunately, with the exception of the breast cancer chapter, Ehrenreich does not specifically cover disability and/or chronic illness issues as they relate to the positive thinking movement. However, her book as a whole may have been designed to be rather “general” since the positive thinking movement impacts many people (for better or worse), not just those with disabilities. This generality is both a strength and a weakness, and I think Ehrenreich’s writing saves her points from being too non-specific.
I will leave you with a quote that stuck with me, from the book’s second chapter:
But in the world of positive thinking other people are not there to be nurtured or to provide unwelcome reality checks. They are only to nourish, praise and affirm. Harsh as this dictum sounds, many ordinary people adopt it as their creed, displaying wall plaques or bumper stickers showing the word “Whining” with a cancel sign through it. There seems to be a massive empathy deficit, which people respond to by withdrawing their own. No one has the time or patience for anyone else’s problems…When the gurus advise dropping “negative” people, they are also issuing a warning: smile and be agreeable, go with the flow–or prepare to be ostracized. (56-57)
Quote: “Who are ‘the Disabled’?”
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.