Tag Archives: health care is an accessibility issue

Recommended reading for May 4, 2010

RMJ: Disability and birth control, part 1

Widespread (rather than individual) centralization of birth control in feminism alienates and marginalizes their already problematized bodies: trans women, intersex women, older women, women with disabilities that affect their reproductive system, asexual women, women who want to get pregnant. Not to mention the loaded history of otherwise non-privileged bodies with birth control in light of the eugenics movement.

Eugenia: Siempre eqivocada

The fact is that, with regards to medical care, the old customer service adage is reversed: if the customer is always right, in Bolivia, the patient is always wrong. In Bolivia, where higher education is less of a universal right than a luxury for the few, poorer, uneducated Bolivians are taught to treat doctors and other professionals as their superiors.

meowser: BADD 2010: The Total Erasure of Partial Disability

In order to “make it” at anything I thought was worth doing, you had to be willing to do some serious OT, put in the extra time, go the extra mile, get that extra degree while still working full-time, put your nose to the grindstone. In other words, prove you weren’t just some lazy slacker who didn’t want to work. And I knew I…just couldn’t. And I felt terrible about that, especially when I got into my 30s and realized that all those overworked, underpaid copy editors (and other people who had done the nose-to-the-grindstone thing) now had real careers making real money, and I was still stuck at the McJob level.

Jha: My Invisible Disability

My depression is a setback. It means I cannot be continuously gung-ho about things like I would like to be. It means that sometimes I have to withdraw from the world or be overcome with exhaustion. I am easily fatigued. Some days, I want to sleep in the entire day and not have to face the world. Other times, I imagine being in a situation where I wouldn’t have a tomorrow to deal with. This doesn’t make me a failure, and it doesn’t make me, or anybody else like me, any less of a person deserving basic respect and consideration.

Latoya: Open Thread: Science, Conclusions, and Assumptions

[O]ne of the most common requests for content on Racialicious tends to come from people who work in public health. One issue in particular they have asked me to spotlight is the issue of clinical trials. For many years, the assumption was that the effects of medical conditions and medicine side effects would be similar on everyone, even though the only people involved in clinical trials were white males.

Valerie Ulene (Los Angeles Times): When prescribing a drug, doctors have many choices — too many, in some cases

Nobody wants to be told that he or she has a medical problem that can’t be treated, that there’s no medication that will help. For most common ailments, that’s rarely a problem; the trouble comes instead when it’s time to choose a drug. Sometimes there are just too many choices.

And, of course, there are numerous posts from BADD 2010, organized and collected by Goldfish at Diary of a Goldfish!

A Conversation With a Pharmacist

[Scene opens with a loooooooong wait in the pharmacy before my number finally “pings” on the digital number-pinging thingy, as I struggle out of my chair, and hobble up to the pharmacist’s window, and hook my cane on the window ledge for emphasis as I hand over my ID and number slip, wincing in the fluorescent lighting on the other side.]

Army Medic Pharmacist: One moment.

Me: No problem, Specialist. (I am well aware that two of my three expected prescriptions require me to wait as they are counted, twice, some other fun stuff, though I no longer have to run around to get them, and have to be signed for, so I amuse myself by reading the literature he hasn’t bothered to hand me yet.)

[AMP returns with the Civilian Pharmacist]

Civilian Pharmacist: You have taken pregabalin with topamax before?

Me: Yes.

CP: What about this antacid?

Me: No. But I assume it is the same as my previous one.

CP: Yes.

[I sign for one med. CP hands me two bottles.]

Me: There should be a third script.

CP: No, only the two.

Me: There should have been a vicodin script as well.

[CP raises her eyebrows at me]

CP: You are on pregabalin.

Me: Yes.

CP: That is a time released pain medication.

Me: Yes ma’am.

CP: You don’t need vicodin with a time released pain medication.

Me: With all due respect, ma’am, I usually have both.

CP: Well, there isn’t a script for it, and I don’t think you need it.

Me: Well, ma’am, there should have been one, and I am going to ask you to call my provider about it.

[Staring contest ensues between Me and CP. I win. CP picks up phone and asks AMP for Dr. Awesome’s number. I can hear Dr. Awesome on the other end apologizing for forgetting the script, that the computer wasn’t working right when I was in her office, which it wasn’t, and that she forgot to put it in before leaving the office, and would put it in the next day she was in.]

CP: Dr. [Awesome] apologizes for your inconvenience. You can pick up the script on Monday.

Fin.

Recommended Reading for November 25

On Living with Pain and Taking Care of One’s Self

I have been managing my chronic pain and taking care of myself for years. But taking care of myself requires the cooperation of other people, and that can be the most difficult challenge to overcome. I cannot take care of myself or be well if others do not take my pain seriously. Just because I was able to do X yesterday does not mean I can do it today. The pain comes and goes. Once it starts I have to let it take its course. But society caters to people who are able-bodied and physically strong. Illness and pain are not compatible with the typical pace of life, and I admit I have anxiety about falling behind.

Living with an invisible disability can be exhausting – not only because chronic, searing pain is energy-draining (in my case), but because it leaves behind no evidence. Communicating with others about my pain often leaves me feeling misunderstood and isolated. Sometimes I want to wear tops that reveal my scar all the time, in order to silently “prove” there’s a *real* reason I just want to lie down, can’t carry that ten pound box, or don’t want to stay out all night partying. I cannot shake the feeling that other people doubt me or believe I use chronic pain as an excuse to get out of doing certain things.

Insurance Company Revokes Depressed Woman’s benefits over Facebook photos

Mental illness is no exception to this rule: people think they know what it looks like, that they can spot a person with a mental illness a mile away, and that if a person doesn’t live up to those expectations, they’re either seeking benefits they “don’t deserve,” or seeking attention. And with regards to depression specifically (as it’s the topic of the original article, and my greatest knowledge base), they tend to think that if someone isn’t spending all of their time crying, frowning, or refusing to get out of bed, they can’t possibly have it.

Your Scooter Means You’re Poor

I have learned that differently abled means poor to many. It means that you are not working. It means that you have no identity or interests. I understand for many being differently abled means poverty because we live in a world that does easily make the accommodations that are necessary to participate in paid work. Knowing that this is the case, why does the stigma attach itself so ferociously? If a person is unable to work because of a lack of accessibility, why do we feel the need to persecute them because of the way our society is designed?

When I tell people that I write, the answer is usually that it makes sense. It does not occur to anyone that I chose this because of a love of writing and sharing ideas. Writing is something that I was interested in from the time that I was a small child. Because I am doing it, it certainly is not real work. Such ideas do not attach themselves to a friend of mine, who makes his living freelancing in this area. Sitting together, people will invariably ask him a multitude of questions, ignoring me completely. It is understood that he chose his work out of love and not convenience.

A Different Kind of Test

More than two dozen seniors at Lincoln University, in Oxford, Pa., are in danger of not being able to graduate this spring — not because they’re under disciplinary probation or haven’t fulfilled the requirements of their majors, but because they were obese as freshmen.

It might sound like a joke, or a violation of individual rights, but James L. DeBoy, chair of Lincoln’s health, physical education and recreation department, said he sees it as his “professional responsibility to be honest and tell students they’re not healthy.”

In the news:

Disability turns laughing matter in Channel 4 comedy show [Headline is really misleading past the first few paragraphs of the article] [Also, oh gosh! People with disabilities don’t all agree on everything! I love that they spelled that out in the article, but it always bothers me that this is considered news.]

Penned by writers from Skins and The Thick of It, the series features six disabled characters marooned on an island, including a blind man, a woman with cherubism and a paraplegic man. Each character is played by a disabled actor with the same disability, and one complains about the number of non-disabled actors portraying disabled people.

Liz Sayce, chief executive of the Royal Association of Disability Rights (Radar), says: “There is likely to be a storm of comment from disabled people and non-disabled people alike over Cast Offs. Some disabled people will find it funny and real – portraying disabled people as adults who swear, drink and have sex. A real break from covering disability with kid gloves, or not covering it at all. Others may well find it offensive.”

Power and Responsibility

An earlier version of this post was published in July, 2009.

When I mention that Don has a homecare worker, and explain what that job is, I often get this question:

“Why don’t you do all that stuff for him?”

This touches on something that I’ve referred to a few times, and that’s the idea that it’s totally okay (admirable, even!) that services for people with disabilities be offered by volunteers. It gets into a lot of complicated stuff.

For example, Don’s homecare worker does things like makes sure he is clean-shaven once a week, washes his hair carefully, and does some of the stuff he needs done for his back, which suffers from a lot of sitting/lying related issues, like heat rashes and sores. She’s there for about an hour or so.

What she does for Don is a huge deal in terms of his personal hygiene. All those little things that allow him to be “acceptable” to our neighbours take energy, such as having clean hair and a neatly trimmed beard. Before homecare, Don would often go weeks, if not months, without a proper shave, and look very scruffy and unkempt. But it would be a decision for him – does he shave today, or does he make a meal? There wasn’t enough energy or concentration to do both.

The question of why I don’t do these things has a few assumptions under it. First, it implies that, because I’m his spouse, I should be in the caretaker role. I should be making sure all his personal hygiene needs are taken care of. There’s a power imbalance there that makes me uncomfortable. It puts me in role as adult, and Don in role of child, and this is just not acceptable.

The other thing is part of why this volunteer thing bothers me. Don’s personal level of comfort should not depend on my energy levels. It shouldn’t depend on my mood. It shouldn’t depend on whether or not I’m angry at him today, or I’m too busy, or if I’m home.

Right now, it depends on whether the woman who is paid to come to our home and do these things shows up. If she calls in sick, there is someone else who will come in. I know she has a degree in nursing, focusing on homecare for people with disabilities. I know she’s a professional, who has been taught the issues around disability and privacy, around personal autonomy, and around sexuality and disability. I know the process we will go through if either she or Don does something sexually inappropriate. I know the appeals process if she threatens him or he threatens her. I know what will happen to Don’s care in those situations. More importantly, Don knows what will happen in those situations. He has personal autonomy.

Don’s health needs shouldn’t be dependent on me in any way, because that’s not safe for Don.

In my experience, Feminism tends to have discussions about caregiving focusing around the fact that caregiving roles fall predominately on women, and lead to things like “the second shift”, or caregiver fatigue, or even directly impact women’s abilities in the workplace. (“I can’t work late because I need to get home now.”) I think this is an important thing to discuss, but I don’t think it’s the only part of the caregiving equation. I think we, as feminists, need to also talk about the power inbalance that comes in when one is a caregiver for a spouse or parent that has a disability.

As well, we rarely talk about what happens when the role of caregiver falls on women with disabilities? What happens to that allotment of spoons then? What view do we have of women with disabilities if their children aren’t “properly” cared for? If some other loved one isn’t getting everything they need? What happens to the caregiver/second shift issues then?

I think feminist discussions about caregiving and responsibility need to broaden out to include these complicated issues.

Recommended Reading for November 10

Transcript from Melissa Barton Interview

This is a transcript of Sharon daVanport’s interview with Melissa Barton for the Asperger Women’s Association. Melissa’s son Alex was voted out of his kindergarten class Survivor-style by his teacher, Wendy Portillo, in May 2008; Alex has Asperger Syndrome. The Bartons have recently filed a federal lawsuit.

Let’s start with, this was her way of “fixing” Alex. And when I addressed the fact that, no, we were in the process of developing an IEP for services, we had a Student Assessment Team, and we all knew that he very likely had autism and more specifically Asperger Syndrome. This was real well-known and I addressed this with her, and she said to me that this was her form of psychology, and this was how she was going to magically heal my child.

Fat, Health, Invisible Disability and the Intersection Thereof

A major downside to being flatbound ’cause of crippling anxiety and dealing with epic depression was no energy to exercise, and not being able to go outside to do so anyway.

Now I’m on anxiety meds and antidepressants. I still don’t have the energy to exercise, and I’m still flatbound, because the anxiety meds make so SO. INCREDIBLY. TIRED. I just made a sandwich for lunch, because I’m starving (that’s a plus to the antidepressants–I’m able to notice when I’m hungry again) and I’m wiped out. Just from making a peanut butter and apple butter sandwich, I’m exhausted.

Michigan and Acupuncture

I found out from my acupuncturist that the state of Michigan is considering requiring it’s citizens to get a doctor’s referral to go to an acupuncturists. So, in other words, rather than hearing from a friend that she went to acupuncture and that person deciding to give it a try too–Michigan wants to make it so that you have to go to a doctor first, and then, if the doctor is willing to actually give you the referral, you can go to the acupuncturist.

Many people who know about the history of midwives in the U.S. know why this is such an extraordinarily bad idea. But for those who don’t know that history–what this particular requirement would do is first and foremost, place an incredibly unfair burden on those people who don’t have health insurance. Those who are unable to afford a doctor would simply have yet another health alternative option removed from their already limited health arsenal.

Just …. arrrrgh.

My school district needs to cut $1.5 million from the budget this year. $900,000 of that comes from “an accounting error”. Think about that.


Wouldn’t you think that *somebody* might have been suspicious of a miraculous decrease in special ed costs, given that special ed is both expensive and needed by more and more students?

In the news:

Good Dog, Smart Dog

Their apparent ability to tune in to the needs of psychiatric patients, turning on lights for trauma victims afraid of the dark, reminding their owners to take medication and interrupting behaviors like suicide attempts and self-mutilation, for example, has lately attracted the attention of researchers.

In September, the Army announced that it would spend $300,000 to study the impact of pairing psychiatric service dogs like Jet with soldiers returning from Iraq and Afghanistan with post-traumatic stress disorder. Both the House and Senate have recently passed bills that would finance the training and placement of these dogs with veterans.

Recommended Reading for October 26

Linkblurt: We Are Immobilised

A disabled college student is having trouble getting around campus, after someone stole his motorized wheelchair. […] Horus had locked it up and left it charging overnight. When he returned to campus, it was gone – all that was left was the charger. […] Horus’ wheelchair cost about $5,000 and that means whoever stole it faces grand theft charges.

“It’s really difficult for me to replace it. To replace it, it would take me like a year,” Horus said.

Health Care is an anti-racist issue [US]:

See, I’m one of the 25 million Americans who are underinsured. I have health insurance — pay $350/month for it — as part of a new policy that I switched to back in January when I quit my 9 to 5 to become a freelancer/fulltime writer for awhile. I’m pretty healthy and only in my thirties, but I have a family history of fibroids (like 50% of black women). So every year when I get my annual physical, I also get an ultrasound to check for those. This year the test showed small fibroids — too small to worry about, really, not even requiring treatment, though I need to keep an eye on them in case they grow. No biggie, I thought; my doctor’s efforts at preventative care had done what they were supposed to do, and detected a potential problem early enough that I can fix it easily if necessary. Health care at its best.

When two whole cakes ain’t enough arsenal…

I was leaning against a sign that read “Bus Stops Here” and jamming to some Dresden Dolls, my trusty guide dog sitting politely at my left leg. He laid down impatiently as the minute hands ticked and still no bus in sight. Then, out of what most docs wouldn’t call peripheral vision I spotted a figure stooping for a pet-by.

What is a pet-by, you ask? It’s when a knowing pedestrian sneaks in a pet or smooch or otherwise grossly boundaries-crossing form of affection at an unsuspecting service animal. Not to be mistaken with human grabbings or other forms of harassment but nonetheless devious and irritating for both animal and human handler.

Without missing a beat and sans usual snark I said loud enough for passerby to hear that “that was a shitty thing to do.” There, I said it. That was a shitty thing for person to do. Ask first, respect my answer, move on. Clearly knowing petting wasn’t allowed, ze sneaked on by, hoping I wouldn’t notice. Too bad my dog alerts me, not liking unknown human touch too much.

Where Neurodiversity Meets Feminist Theory: Part I, Part II, Part III:

Another area I see feminism and disability-rights perspectives reinforcing each other is on the question of caregiving. This might not seem like an obvious choice, since you often see feminists and disabled self-advocates at odds over this issue: when disabled people assert our right to adequate care in our own homes (or wherever we choose), feminists argue that we are also claiming entitlement to the underpaid or unpaid labor of women. (See the feminist blogswarm over Ashley X for ample evidence of this conflict).

But when you think about it, modern industrial capitalist society’s way of dealing with children, disabled people, elderly adults and every other group that needs help with daily tasks is exactly what you’d expect from a society in which women are invisible second-class citizens. When women are not valued as highly as men, women’s work is not regarded as real work, and obligations that fall under the umbrella of “women’s work” (say, care for the old, the sick and the disabled) will be more likely to be dismissed as “family responsibilities” in which government meddling is unwarranted.

Post-Trauma.net is “here to help you access information about Post-Traumatic Stress Disorder and related mental health information.” They have a list of resources available.

Recommended Reading for October 19, 2009

In the Blogs:

Them and Us

A lot of people have caught on that they need to provide access for the disabled when they build something, but apparently access is only needed for Them.

You know, Them. There’s Them, and then there’s Us. They might be disabled, but We aren’t, and never will be.

Accessible restroom? Oh, no, because the restroom is only for employees, and none of our employees is disabled (or ever will be).

Elevator to the second floor? Oh, no, because the public doesn’t need to go to the second floor, and nobody who works there is disabled (or ever will be).

Access to the stage? Oh, no. There’s access for the audience (Them), but the actors and singers and stagehands (Us) aren’t disabled (and never will be).

[This really resonates with me, especially after Campaign School this weekend. Although they did address issues of making accessible campaign literature and ensuring your office was accessible, everything was spoken of as though no one with a disability would be part of a campaign, either as a volunteer, employee, or candidate. Them, and Us.]

Marginalized folks shouldn’t always have to be “the bigger persons”

But, you know, it’s not just people of color who are constantly expected to show extraordinary compassion when faced with bias. It is women, gays, lesbians and the transgendered. It is the disabled, the obese, immigrants and the poor. Ask any marginalized person and it is a safe bet that they have been told “have a sense a humor,” “don’t be so PC,” “that’s just how so-and-so was raised,” “here’s a great teaching moment, “you have to understand some people won’t be comfortable with x, y, z,” “he didn’t really mean it.”

Via Unusual Music: College Mental Health: A Different Diagnosis:

Students interviewed for this story reported that mental health seems like a low priority on campus. Alexa at New York’s Westchester Community College notes, “Mental health seems to be something that people really keep to themselves.” She describes her community college’s scarce resources as consisting of one social worker and a two-by-three inch bulletin board in the upstairs of the student center. “I only realized it was there while waiting for three hours in the hallway to register for classes.”

Access to services — such as individual and group therapy, consultation and referrals, support groups, medication monitoring and crisis hotlines — varies from school to school. However, most college campuses would benefit from improvement and expansion of their mental health facilities and services. Students are generally granted a few free counseling sessions, but due to increasing financial restrictions, the number of sessions can be scant — as few as five visits per student.

At two of my previous universities, you were limited to less than 10 sessions over a year. I believe my current one has unlimited sessions, but you must call the office between 9:00 a.m. and 9:15 a.m. for a same-day appointment. There is no booking in advance.

In Our Own Words: Fighting for our DLA [UK] [Older post] [DLA = Disability Living Allowance]

DLA was established, after years of research, because the costs of living as a disabled person in a barrier-filled world organized by and for non-disabled people were considered to be so high. The estimated costs of disability that came out of this research were far, far higher than what is actually now given to DLA claimants. It was also emphasised that DLA should not be means-tested, because the costs of disability are high whether a person is extremely poor or generally has enough to live on.

Also, FrolicNaked did three posts about NPR’s American health care discussion. Post 1, Post 2, Post 3.

My new favourite website: Wave: Web Accessibility Evaluation Tool. How does your website measure up?

Recommended Reading for October 15, 2009

Another busy day for me, so again, this is quick! (I’m coming to you from the past!)

In the blogs:

Reminder! Liz Henry is hosting the Disability Blog Carnival! Submit your links to be included!

Getting her privileged little way:

I was out yesterday with my sister, mother and nephew in Walmart. They walked away for a moment and while I was alone looking at something on a shelf , a woman pushing a large cart came toward me sideways. Instead of asking me to move, she banged the cart into the side of my wheelchair.

I’ve seen this type of rude and boorish behavior before. I was in her way and she is – well – able bodied. Never mind that there were half a dozen other people – also able bodied- who could have moved out of her way. She saw the wheelchair and I was the one in her way.

Two Hospitals to Address Access to Care for Patients with Disabilities [US]

Under a new agreement between the hospitals and the advocacy groups, the hospitals will survey and remove physical/architectural barriers to care, purchase accessible medical devices and equipment (including mammography equipment), review and modify hospital policies, provide appropriate training to staff. The hospitals must regularly report to patients and their advocates on the progress they are making. According to the Globe, advocates hope that the changes to be made at these facilities will serve as an example for hospitals across the country.

Seriously, I have ranted more than one in my own space about wheelchair inaccessibility in hospitals. My biggest pet-peeve is inaccessible waiting rooms. Don’s is people demanding he stand (that wheelchair is not for show), and then baby talking to him. Fun times.

The Etiquette of Menstrual Concealment Preserves Pain as well as Secrecy:

Kate Seear’s newly published study about the diagnostic delay in treating endometriosis finds that menstrual etiquette rules and the culture of concealment are among the most profound causes of the delay between the first experience of menstrual pain and the diagnosis of endometriosis, which then opens avenues for relief through either surgery or medical treatment. The delay is non-trivial: research estimates an average delay of 8 years in the UK and 11 years in the US. Reasons for the delay include minimizing of menstrual pain by doctors, family members, and others, and women’s inability to distinguish between ‘normal’ menstrual pain and abnormal pain, and, Seear argues, the social sanctioning women experience when they talk about menstruation in general or menstrual pain in particular.

I was thrilled to learn that the Disability Studies Lecture Series at Temple U will be available on line in both text and audio.

I’m not just concerned, I’m utterly appalled:

A trial is set to begin in Northern Victoria, in which 30 Australian Aboriginal participants will undergo gastric banding. Because you know, banding has worked for the ‘white population’ so let’s experiment on the blacks and see if it works for them too. And that is practically a direct quote. I shit you not

In the news:

Via UnusualMusic: A Fatal Cultural Gap: Depression Among Minorities

Major depressive disorder is a common disease, occurring in approximately three out of every 20 people in the United States.

However, members of minority communities, especially first-generation immigrants, often express their illness in a manner that is different from their white counterparts, which makes it more difficult to diagnose depression in them, said Dr. Russell Lim, who teaches cultural psychiatry at UC Davis School of Medicine.

“We (who are trained in Western medical schools) are defining depression though our cultural lenses,” said U.S.-born Lim. “A cultural psychiatrist, on the other hand, looks for less specific signs” than those outlined in medical textbooks.

Recommended Reading for October 13, 2009

In the blogs:

The Ashley Treatment Yet Again:

I read as much as I can and try to keep abreast of any new developments. I do this because I remain deeply troubled by the larger implications of the Ashley Treatment, now referred to as growth attenuation by doctors. The change from the simple and easy to google Ashley Treatment to growth attenuation is not a matter of semantics. To me, this is a way for those that have relentlessly pushed this so-called treatment as a viable option to avoid publicity. Frankly, given the hysterical reaction by the mainstream media to the Ashley Treatment I cannot blame them too much. Nothing good came from the media’s pack mentality when the story broke in 2007. The doctors that advocated for the Ashley Treatment came across as arrogant and stuck their proverbial foot in their mouths multiple times. Disability activists were unable to articulate why the Ashley Treatment was so dangerous and were quickly type cast as stereotypically angry. Utterly lost in the furor was any nuanced discussion. Sadly, not much has changed and I remain distressed because I have just finished reading an article scheduled to appear in the American Journal of Bioethics entitled “Ashley Revisited: A Response to Critics” by Douglas Diekema and Norman Fost.

What Kind of Troll am I?:

If you are a reader of blogs about autism, you have seen your share of comments denouncing the views of self advocates around the web. Sometimes they are personal attacks on autistic people. Many rehash the same tired “Not Really Autistic” meme or promote urban myths about the causes of autism. Most feed pervasive stereotypes of one sort or another. Still others are so vile I won’t describe them even obliquely.

Most readers of this blog tend to be civil and capable of using reason to make their points. However, if you are someone who enjoys being abusive toward autistic self advocates and those who support their goals, you just might be wondering…What kind of troll am I? Here is a survey so scientifically valid, it is sure to be linked from AoA ASAP.

Pride & Prejudice:

Then, when I was 27, I was diagnosed with a mental illness. The doctor said to me (in effect), “You have a deeply flawed mind. It’s screwed up and you’ll have to take this medicine that slows your thinking and makes you forget everything. Learn to write it down.” Talk about a slap in the face. I ripped my clothes and dumped ashes on my head and whined long and loud to God about it. “Why me? Oh Woe Poor Poor Pitiful Me!” Then He said to me (in effect) “Deal with it. It’s what you are.” So I realized that I had no right to be proud of my mind anymore. It was kind of a release, because pride is a heavy burden, even when you’re used to bearing it. All of a sudden, I *wasn’t* better than everyone else, and it became easier to be patient and kind. Which turned into something kind of nice.

Freaks, Hercules and the Hydra [long]

Much has been written about the ambiguous nature of disabled people’s exploitation and/or free-willed participation in circuses in the 19th and early 20th centuries, and there are intersections with race and colonialism, among other things (some of which i touched on in this old post), and the film “Freaks” reflects that ambiguity, both from “within-story” and “external” perspectives – most of its cast were “real” circus performers, some of whom had already had long and celebrated careers before starring in it, and many scenes show the “freaks” performing parts of their acts, both in-context in the story and, more problematically, in other scenes that could be regarded as gratuitous (for example, the “Armless Wonder” drinking wine with her feet, or the completely limbless Prince Randian lighting a cigarette using only his tongue). Opinion has been divided over whether the film itself was an act of exploitation of its disabled performers – who were, as reported here, viciously excluded and discriminated against at the MGM studios – as well as whether its climatic scene represents a reversion to negative tropes of disabled people as monstrous and villainous, or a subversion of that trope (however IMO there is considerably more going on there – see below).

Breathtaking to behold: talking back to dismissal:

One of my biggest interests is the study of how oppression plays out, and how it is resisted, among communities that most people would consider minorities. (Note: Minority in amount of power, not in amount of numbers. So yes, women count.) Not some sort of study of victimhood the way some people would paint it, but rather how people resist becoming victims.

It is breathtaking to behold communities where enough people have worked out the way things work, that when they are hit with the usual forms of sexism, racism, ableism, heterosexism, etc., they are ready for it. They have answers to the usual bothersome questions and comments designed to disempower them. Even if the people attacking them don’t understand those answers, they at least are told a lot of the same things by a lot of people.

In the news:
Go, read this! It thrills me to no end.

CDC and disabled patients: ‘We’ll work on this together’ [US]

For many women, the inability to stay still prevents them from seeking regular breast cancer screening.

But a health education program is gearing up to encourage woman with physical disabilities to seek medical attention and get regular screenings.

“Women with disabilities are getting screened at a less regular rate because there are so many barriers with going to the doctor,” Egensteiner said.

The medical equipment used to perform mammograms also can prove a barrier for women with physical limitations.

Can you collect employee medical info to combat H1N1? [US] [Note: ADA = Americans with Disabilities Act]

Employer groups have been asking the Centers for Disease Control for guidance on whether privacy rules prevent HR from surveying employees about medical info designed to control the spread of swine flu. The CDC has responded, including an approved form for requesting certain types of info.

The CDC has issued a document – “ADA-Compliant Employer Preparedness For the H1N1 Flu Virus.”

Outrageous pre-existing conditions

(Originally posted a month ago at three rivers fog; in the meantime, news also came out that things like acne were considered pre-existing conditions as well: consider any and all further outrage well and fully included in the subject of this post.)

You’ve undoubtedly heard the news already. A history of domestic violence or C-section are considered, by private US health insurance companies, to be “pre-existing conditions,” which are used as a basis for denying coverage, rescinding coverage, charging higher rates, or other discriminatory practices.

Of course, this is outrageous. Why should a woman who has been beaten by some asshole be denied health care coverage? It isn’t fair.

But there’s something wrong here. And not just with this discriminatory practice — but with the people breathlessly reporting it.

Because, you see, it is being reported, not as:

Pre-Existing Condition Exclusions Are Morally Wrong, but as

How Dare They Treat DV Victims and Mothers the Same Way They Treat Women with Depression, Diabetes and Cancer!

It is being reported as different from “normal” pre-existing condition exclusions. It is being reported as being especially wrong. As being worse. A true moral violation, taking things to a new level.

But why?

Here’s the thing. Insurance companies refuse coverage to people with pre-existing conditions (anything from asthma to leukemia) because they know these people will be highly likely to incur greater costs than healthy patients. The entire rationale for excluding them is because they cost more money.

If you have had a C-section once, you are much more likely to end up having another one if you ever give birth again. If you have a history of domestic violence, you might end up with an abusive partner again, and end up needing care.

Yeah, it’s complete bullshit that these people would be refused health care. It’s downright immoral.

But why is it especially immoral to refuse health care to these women — but not to women with osteoporosis or an anxiety disorder or back pain? Or Ehler-Danlos Syndrome or food allergies or heart disease or lung cancer?

How is it any different?

Victims of domestic violence don’t deserve to suffer consequences for something that is not their fault. This is truth. It contributes to the very popular cultural myth that victims are somehow to blame for the abuse they suffer — that they must have done something to provoke it, or that they should have left, etc. All this stuff is highly damaging.

But that doesn’t make it different than telling a woman with lung cancer that she can’t have care because her disease is somehow her fault. Which contributes to the very popular cultural myth that people with medical conditions are somehow to blame for them — that they must have done something to earn them, that it’s their own fault they ended up that way, and therefore they lose rights to certain things because they are inflicting the costs of their mistakes on the rest of us.

Because if you haven’t done anything wrong, you won’t ever end up sick. If you do end up sick, there must be something you did wrong.

Maybe that woman smoked. And maybe that other woman slapped her boyfriend first. And that woman who was raped wore a short skirt and flirted with the man first. That does not make this violation her fault. This is basic feminist theory. “Blaming the victim.”

Health care is a human right. We all deserve basic health care that respects a person’s dignity and integrity and humanity.

So why are these things different? Especially outrageous?

I can’t identify any reason except one.

Because they apply to healthy women.

It’s understandable why health insurance companies would refuse care to women with arthritis. It makes sense that they would deny care to women with psychiatric disorders.

Because we, as a society, think it is OK to deny quality of life and societal access to people with medical conditions, disabilities and chronic illnesses. We have determined that it makes sense to discriminate against them. We get why these things are done. And they’re done to those people. Over there. Not to me and mine.

But C-sections? Why, one-third of mothers in the US will have a C-section instead of a vaginal birth! That affects me and mine. Therefore, it is especially outrageous — that we would be treated like we treat them.

Oh, but that’s not how you think?

Really?

What justification is there for acting as though these practices are any worse than the practice of denying coverage to women who have lupus?

There isn’t any that isn’t rooted in a deeply ableist bias.

How about we get outraged by the fact that there is any such thing as a pre-existing condition exclusion at all? I can get behind you on that one.