Daily Archives: 24 March, 2010

Recommended Reading for March 24, 2010

recommended reading

Vaginismus and biofeedback on Dr. Oz

Unlike a few months ago when Dr. Oz did vulvodynia, this time he did not have a representative from a vaginsimus awareness organization on the show. Perhaps this is because there is no such nationally recognized vaginismus organization (that I’m aware of,) as there is with the National Vulvodynia Association. There are patient-led organizations, treatment clinics, support groups, and doctors prepared to address vaginismus, yes. But for some reason Dr. Oz did not have anyone from one of these groups on the show to talk about it. Instead, he called a random audience member, Ronnie, onto the stage.

I think it is no coincidence that on this episode, without the direction of someone experienced in dealing with vaginismus, it was treated more flippantly than vulvodynia was a few months ago. Vaginismus was compared to panic attacks, localized to the pelvic floor.

One Hell Of A Ride

I’ve been talking to several people about cures and quality of life, and I find I’m struggling to organise my thoughts on my own quality of life. I’ve blogged extensively about this, both the negatives and some of the positives. But some of my interlocutors seem to want one-line generalisations like “given the choice, one would naturally chose not to be blind”.

But I can’t do that. I can’t put the whole of my disabled experiences in tidy one-line summaries like that.

T-shirt Slogan Fail

The stigma surrounding mental trauma and non-neurotypical brain conditions is a huge barrier to full emotional health. When people are unable to talk about their condition for fear of being ostracized, or losing a job, or being kicked out of housing, or losing custody of a child, or coerced into treatment regimens they don’t consent to “for their own good,” the silence they are forced into only exacerbates their suffering. It cuts them off from potential sources of support. [And let me be very clear that the fears listed above are not irrational and paranoid: they are very real occurrences; I’ve experienced a couple myself.]

I’m all for people taking steps to eradicate the stigma of having a mental illness or non-neurotypical condition, and I think it’s great to have allies in this struggle. So for the most part, the goal of the website is a decent one, and I was happy to see that the site also contains good information for people just starting out in trying to understand what it means to have a mental health condition that can impair one’s day to day quality of life.

But.

In the news:

US: Vermont cop tases and tases a mentally ill homeless 59 year old woman

A cop in Barre, Vermont repeatedly tased Ann Osborn, a 59-year-old mentally ill homeless woman who was standing in a parking lot with her arms folded.

Fiji: Hospital faces major wheelchair shortage

Health Ministry spokesman Iliesa Tora said the lack of wheelchairs was a problem especially at the Colonial War Memorial Hospital’s Emergency Unit. CWMH’s Emergency Unit, known to cater for the very critical and serious cases, now faces a problem to provide wheelchairs to assist those who can not walk or find difficulty to walk in to see a doctor. It was confirmed that wheelchairs were shared among patients and in some cases caused delays for those who needed immediate attention or wanted to go to the toilet.

Happy Ada Lovelace Day!

Uncategorized

Ada Lovelace Day is a celebration of women inventors & women in the sciences. It is also a poorly-disguised excuse for me to history geek at everyone around me, since, of course, we can celebrate awesome scientists both past & present.

I know that this list is fairly quick & dirty – the history of technology & medicine is not really my strong point, I must admit, and I’m still hoping to get a broader list next year and in future years. I also, of course, want to live in a world where one does not feel obligated to spend a “special day!!!!” celebrating the achievements of women because those achievements are no longer underplayed, undervalued, or just ignored. But, since I live in this world, with my own limitations and my own need to learn more, this is the list I have.

A (short) (biased) List of Women Who Invented Stuff Relevant to the Interests of Some People With Disabilities:

Dorothy Crowfoot Hodgkin won the 1964 Nobel Prize in Chemistry.

A British biochemist and crystallographer and the 1964 Nobel Prize winner in Chemistry for her determination by X-Ray techniques of the structures of biologically important molecules. Dorothy Crowfoot Hodgkin used X-Rays to find the structural layouts of atoms and the overall molecular shape of over 100 molecules including: penicillin, vitamin B-12, vitamin D, and insulin.

Helen Free invented the home diabetes test

Three years after beginning work at Miles, she married Albert Free (1947). Often working together, they became two of the world’s leading experts on urinalysis, an essential clinical procedure with countless applications. Free first developed dry reagents for use in laboratory urinalysis that are now, in tablet form, standard around the world. She went on to develop more consumer-oriented devices. The most important of these was a “dip-and-read” test that for the first time allowed diabetics to monitor their blood glucose level instantly and at home.


Gertrude Elion invented the leukemia-fighting drug 6-mercaptopurine and drugs that facilitated kidney transplants.

Gertrude Elion patented the leukemia-fighting drug 6-mercaptopurine in 1954 and has made a number of significant contributions to the medical field. Dr. Gertrude Elion’s research led to the development of Imuran, a drug that aids the body in accepting transplanted organs, and Zovirax, a drug used to fight herpes.

Dr. Marie Curie is known to the world as the scientist who discovered radioactive metals.

Together with her husband, Pierre, she discovered two new elements (radium and polonium, two radioactive elements that they extracted chemically from pitchblende ore) and studied the x-rays they emitted. She found that the harmful properties of x-rays were able to kill tumors.

Rachel Fuller Brown and Elizabeth Lee Hazen invented the worlds first useful antifungal antibiotic – nystatin.

As researchers for the New York Department of Health, Elizabeth Lee Hazen and Rachel Fuller Brown combined their efforts to develop the anti-fungal antibiotic drug nystatin. The drug, patented in 1957 was used to cure many disfiguring, disabling fungal infections as well as to balance the effect of many antibacterial drugs

Bessie Blount patented a device that allowed amputees to feed themselves

Bessie Blount, was a physical therapist who worked with soldiers injured in W.W.II. Bessie Blount’s war service inspired her to patent a device, in 1951, that allowed amputees to feed themselves. The electrical device allowed a tube to deliver one mouthful of food at a time to a patient in a wheelchair or in a bed whenever he or she bit down on the tube. She later invented a portable receptacle support that was a simpler and smaller version of the same, designed to be worn around a patient’s neck.


Patricia Bath invented the Cataract Laserphaco Probe.

Patricia Bath’s passionate dedication to the treatment and prevention of blindness led her to develop the Cataract Laserphaco Probe. The probe patented in 1988, was designed to use the power of a laser to quickly and painlessly vaporize cataracts from patients’ eyes, replacing the more common method of using a grinding, drill-like device to remove the afflictions. With another invention, Bath was able to restore sight to people who had been blind for over 30 years.

Betty Rozier and Lisa Vallino invented the Intravenous Catheter Shield:

Betty Rozier and Lisa Vallino, a mother and daughter team, invented an intravenous catheter shield to make the use of IVs in hospitals safer and easier. The computer-mouse shaped, polyethylene shield covers the site on a patient where an intravenous needle has been inserted. The “IV House” prevents the needle from being accidentally dislodged and minimizes its exposure to patient tampering. Betty Rozier and Lisa Vallino received their patent in 1993.

Krysta Morlan [who has cerebral palsy] invented the cast cooler:

Krysta Morlan’s first invention was a device that relieves the irritation caused by wearing a cast called the cast cooler. The portable cast cooler works by pumping air into a cast through a plastic tube. Krysta Morlan was in grade 10 when she invented the cast cooler. Still in high school, Krysta Morlan then invented the Waterbike, a semi-submersible, fin-propelled pedaled vehicle.

Françoise Barré-Sinoussi was half of the team that discovered the human immunodeficiency virus (HIV):

Françoise Barré-Sinoussi and Luc Montagnier discovered human immunodeficiency virus (HIV). Virus production was identified in lymphocytes from patients with enlarged lymph nodes in early stages of acquired immunodeficiency, and in blood from patients with late stage disease. They characterized this retrovirus as the first known human lentivirus based on its morphological, biochemical and immunological properties. HIV impaired the immune system because of massive virus replication and cell damage to lymphocytes. The discovery was one prerequisite for the current understanding of the biology of the disease and its antiretroviral treatment.

Feel free to add to it in the comments, or link your own posts regarding Ada Lovelace Day!

Aware of what exactly?

media and pop culture, representations, work,

Cross-posted at Zero at the Bone and Feministe.

Well, it’s Disability Awareness Month in Indiana, USA. Sound Bend, IN, network WSBT are raising awareness with a story about Sarah Schelstraete, who has Down Syndrome. It’s called Sarah’s Story: Hard at work despite disabilities. One thousand points if you can anticipate from the title what my major problem with the article was.

Now, impairments can make particular kinds of work, or work at all, difficult for people with disabilities, particularly when accommodations – be they ramps or particular lighting or a chair or whatever – are not provided. Leaving aside any accommodations Ms Schelstraete might utilise (it’s irrelevant and really none of our business) there’s no indication as to what impact her impairment might have that would make it hard for her to work at her job as the article title suggests. In fact, the article doesn’t tell us what her job actually is, but moving right along. Now, I’m not saying she definitely doesn’t have challenges related to her impairment, but rather that I have a problem with a particular narrative that this article taps into. This is a narrative that erases Ms Schelstraete’s individual situation, whatever that might be, in favour of conveying disability as something the poor dears must overcome! in their tear-inducing (to abled people) efforts! to live a normal life! which includes paid work!

Perhaps it is that push to gloss everything over that skews the narrative here, but let’s take a gander at the actual information the article provides. Ms Schelstraete is clearly a ‘dependable employee,’ as her supervisor Donna Martis says. She does her job well; interviewees are enthused about her being good at her job. There is not really a need, it would seem, to say that she is doing a good job in spite of her being disabled. She is good at her job. And she is disabled. Just like she is good at her job and a woman, good at her job and a daughter, good at her job and a resident of Indiana, good at her job and, I don’t know, maybe she likes detective shows or cupcakes or whatever. But time and again when disabled people are featured in the media, there’s a kind of shock that “those people” could achieve anything of worth – worth defined according to ableist standards around paid work, of course.

As such, I have a problem with wording like this in the article:

‘Martis said Sarah is a valuable employee who knows how to do her work, and requires little supervision.’

Or how about this?

‘Like any hard-working employee, Sarah knows one big benefit of having a job is making money. She often uses her paycheck to buy DVDs and CDs.’

Yep, just like everybody else – yet her competence must be uniquely examined and confirmed by all these people, despite her having been employed by the same laboratories for seventeen years. This is yet another example of the media trope in which PWD are achieving! through! the hardship! Would you like to know what a hardship is? For many PWD, sometimes more than our impairments themselves? Putting up with that condescending bullshit and fighting to be approached as actual people who should be approached with respect. Because handing out “well done!” stickers has nowhere near of the same value as does being treated like a person with things to offer.

These kinds of awareness-raising stories do little more than give abled readers/viewers/listeners a lift, a feel good story they can tuck away out of mind when they’re done. It’s easier for PWD to be a one-dimensional story, those people put there to light up abled people’s worlds with inspiration, prompting a whispered gratefulness that they’re not one of them. How about we raise some awareness of the social oppression attached to being disabled? Awareness ought to be raised about how many disabled people are out of work because, as Ms Schelstraete’s employment consultant Stacey Simcox says, many ‘don’t give someone the chance because they already have the mindset that they’re not going to be able to do the job even with the support’. About how disabled people so often are treated as though they’re being done a favour by being employed at all. About how work can be a struggle or impossible because of workplace bullying. Because of refusal to provide decent wages. Because employers won’t grant equitable working conditions or accommodations.

And let’s raise awareness about the valuation of work. There’s a nasty thread that runs through these kind of stories that holds disabled people to be societal leeches, a drain on resources. This kind of thinking defines human worth in terms of money, as though people are only good for how much money they contribute and how little they take from welfare or healthcare programs and such. It’s the kind of argument used against poor people who need that assistance, it’s the kind of argument that has led to women’s unpaid work in the home being so devalued. It’s thinking that tries to shame those who utilise thoroughly deserved government assistance, as though it doesn’t exist for a reason.

I am continually astounded by negative reinforcement of difference, but barely ever really surprised. You’d think efforts to raise awareness would require being aware.