Recommended Reading for Wednesday, 21 July 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

A wheelchair user competing in a marathon, caught in the act of leaning forward for more power.

Photo by Flickr user widdowquinn, Creative Commons License.

Cathy Heffernan at The Guardian: Comment is Free: Stop stonewalling deaf jurors

When I received a jury summons a few years ago, I opened it up excitedly, conjuring up scenarios casting myself as a female version of Henry Fonda in 12 Angry Men, heroically leading my jury through society’s murky prejudices to deliver a landmark decision and liberating an innocent in the process. (I had a rather romantic notion of jury service back then.)

But something stopped me in my tracks. I saw that deaf people were included among “incapable persons” under the list of ineligible people. I was stunned. I’d just graduated from university and yet here I was, considered by the Irish court system as “unfit to serve on a jury”. What’s more, I was expected to meekly sign this summons and return it – in other words, agree to their exemption.

Dr. Rob at Musings of a Distractible Mind: A Letter to Patients With Chronic Disease

Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain – is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

Oregon Health and Science University: Racism Shapes African-American Women’s Views on Depression Care (via Racialicious)

“These women were extremely wary of most depression treatments and providers they associated with ‘White’ systems of care. Although they acknowledged that violence, depression and substance abuse adversely affected their health, discussions about health care revolved around their perceptions of racism,” said Christina Nicolaidis, M.D., M.P.H., principal investigator and an associate professor of medicine (general internal medicine and geriatrics), and public health and preventive medicine in the OHSU School of Medicine. “Based on our findings, we recommend health and mental health providers endeavor to better understand and acknowledge how racism informs the experiences and perceptions of their patients.”

The expectation of being a “strong Black woman” also was a significant barrier to recognizing depression and seeking care. Co-investigator S. Renee Mitchell has used this finding to launch a campaign asking: “Strong Black woman – what are you burying, your feelings or the myth?” The research team also has organized several community depression and violence awareness events titled “Redefining the Blues.” An additional event is planned for the fall.

Kai Wright at Colorlines: HIV in Poor U.S. Neighborhoods as Intense as Developing World

The first is straightforward: Poverty and HIV are tied in the U.S. To establish this fact, researchers looked at HIV prevalence, or the share of a given population that is infected. They found HIV prevalence in high-poverty neighborhoods to be more than double that of the nation overall. Moreover, within high-poverty neighborhoods, prevalence among people living below the poverty line was double that of those living above it. If silence equals death, so does poverty.

The study’s focus on heterosexual adults is significant and generates the second important finding: that epidemics in poor U.S. neighborhoods are of similar intensity as those in poor nations globally.

Ames Alexander at Charlotte Observer: Advocate for mentally ill to meet Obama

“The president wants to mingle and meet and talk to people with disabilities where the law has made a difference in their lives,” said Andrew Sperling, director of legislative advocacy for the National Alliance on Mental Illness (NAMI), a leading group for those with psychiatric ailments.

Cian O’Luanaigh at The Guardian: Comic superhero Echo fights stereotypes of deaf people

Echo uses both American Sign Language (ASL) and a Native American system developed for communication between tribes speaking different languages. The sign systems appear throughout the comic, both when Echo is signing and as background art.

9 Comments

  1. It may be because my pain just shot up (that’s what I get for going upstairs), but the bit of the letter shown here made me cry.

    See Dr Ego on Friday, pain and nausea are sooooooooo fun, hai na?

  2. Whatever you do… don’t read the comments on the Guardian article, unless you’re in the mood to be angry. I made that mistake (as I frequently do, even though I really know better) and now I just… argh.

  3. good on the racism shaping depression treatment recommendations that the medical/mental health professions change to accommodate the needs of non-white folk and to acknowledge the racism in existing medical and mental health institutions.

    the study on hiv/aids in poor and non-white communities in the us is enraging. we are a wealthy fucking society; we can easily afford to do things that would alleviate not only the disparate impact of hiv/aids but the disparate impact of poverty on non-white people and communities. but we have a political system where we will pay dearly for shit because it is racist. it is more desirable to lock up non-white people than to have a drugs policy that actually works. so there’s not a fucking chance the representatives of white resentissement are going to do what’s needful here.

    also fucking do not care about how scary i am to doctors. i keep being told i need to understand the perspectives of caregivers and damn few of them seem to be told they need to understand mine. yeah i’m difficult and complicated and all that shit but get the fuck over it. y’all just have to live with treating me. i get to live this. and when you shitheads take me off my pain meds because you’re worried about depression? like severe unending pain isn’t fucking depressing? my capacity to sympathise with your fear and frustration is fucking gone assholes. yeah i know there are different readings for this than ‘i’m going to hurt you and it’s for your own good’ (oh hi abuse trauma echoes i missed you so much) but i really am not interested in any of the others.

    angry moira is angry. going back to under rock now.
    kaninchenzero´s last blog post ..expletives

  4. K0, the advice to patients letter made me fucking furious, too. Frankly, I really don’t care if they find me scary, either. I have yet to find a doctor who gave me respect without me “coming on too strong” at the beginning, and again and again and again every time they disrespect me or decide they’re not going to listen to me. And I’m not going to try it (not standing up for myself at the beginning) again.

  5. Seconding do not read the comments on the Guardian article, Jesus fucking CHRIST.

    It’s amazing how something can seem so incredibly obvious to me (“deaf people not being allowed to serve as jurors is NOT OKAY WTF who the hell came up with that?”) and so strange and bizarre and wrong to the general population. I mean, seriously?

  6. I read the “letter to patients” before it appeared on here having been tweeted it by someone who’s been bedridden for years and who knows/knew lots of people in a similar (or worse) situation. Dr Rob never mentions ME/CFS or abuse in his letter, and it may not have occurred to him that a lot of chronically ill patients are actually scared of the doctors, having received aggressive and bullying behaviour from them at a time when they were very sick and in terrible distress, sometimes as children, and whose conditions got immeasurably worse, in some cases irreparably so. It’s difficult to respect a profession that’s caused you this much damage.

  7. I just responded to that Dr. Rob letter to patients:

    New here, got linked from elsewhere. Thank you for this post. I genuinely had tears streaming down my face from the first paragraph on – both because it is so amazing to hear a doctor understand so well our plight as chronic illness patients and get that doctors are imperfect but trying their best, and also because I’m still so frustrated. Tears of gratitude and anger flowing at once.

    I get it, you know. Doctors are human beings. And you’ve trained hard and long to learn how to cure people and we, the uncurable, are frustrating to you. But it’s a million times more frustrating for us, not only having to live in these bodies but to have to go to doctors who don’t want to treat us. At the very very very best, we get doctors who are sympathetic and well-researched and willing to treat our symptoms as aggressively as we wish to treat them. At the worst, we are bullied, ignored, screamed at, told one minute that the doctor will do anything to make us better and told the very next that there is nothing anyone can ever do for us so we better get used to it, given bad recommendations to disability offices that deny us benefits we need, and the list, as I’m sure you already know, goes on and on.

    So on the one hand, Dr. Rob, it’s nice to have a doctor lay it all out there and explain why we are so frustrating to deal with and why so many doctors dislike or even refuse to do so. It’s nice to hear that it’s not our fault.

    On the other hand, why should the solution to this problem be that we, as patients dealing with daily excruciating symptoms, who are already being bullied and ignored and abused by the society we live in, treat the very people who are supposed to care for our bodies the most with kid gloves? I am literally at my most vulnerable in a doctor’s office. That is when I desperately need someone to treat *me* with kid gloves. That is when I need to be able to be strong enough to advocate for myself, and I cannot, literally cannot, do that and walk on eggshells around a doctor’s fragile ego at the same time. It is hard enough for me to speak up, even to a caring and gentle doctor – much less a harsh and insensitive one.

    Am I saying that this means I storm around a doctor’s office making unreasonable demands? No. But I also should not have to psychologically arm myself before stepping into that office. Seeing a new doctor, or one who has treated me poorly in the past (and I’m sorry but many of us chronically ill patients do not have a lot of choice of who we can for reasons having to do with locale, insurance, and finances, etc.) puts me at severe unease. The first time seeing a new doctor, I don’t know if I’ll be getting one of the ones who will meet my eyes, tell me the limitations of what they can do, and ask me what direction I want to go in. I very well could end up with one of the ones who yells at me until I cry because I am confused, when confusion is part of my illness.

    I appreciate this post more than you know. I honestly do. For many reasons I probably can’t even articulate right now. But it still also leaves me angry.

  8. I’m so with you, Rosemary. I get that the guy who wrote this is trying to open a dialogue of sorts, but I also got angry when I read it. I just dealt with a surgeon yesterday who clearly has little experience with patients with chronic illness. He’s a sports doctor. I have RA, and need a hip replacement. He condescended to me, made me feel like crap about my various joints — “that’s terrible” came out of his mouth several times as he examined me — and he referred sneeringly to the meds I’m taking to try and get into remission as “poison.”
    I am not going back there. Fortunately, I have another, equally skilled ortho I can go to. He was kind, and gentle, and treated me like a human being.

  9. I joke that I live as a double agent as both a patient and health care provider. I have multiple chronic conditions. I have recently completed my training in pediatrics. The “letter to patients” article makes me feel ashamed of my profession.

    It is not the job of the patient to make his or her doctor feel better. It is not the job of the patient to avoid making the doctor feel out of control. It is not the job of the patient to avoid scaring doctors.

    Rather, it is the job of the doctor to learn to care for patients with complex, puzzling chronic conditions. It is the job of the doctor to learn to share control with the patient rather than need to be in control at all times. It is the job of the doctor to learn to respect the patient who comes in with knowledge and questions and ideas and to not feel threatened by patients who take that approach. It is even the job of the doctor to get a reasonable grasp on a situation without those years of prior knowledge of the patient, when circumstances require, such as in the ER, and to provide adequate and respectful care.

    Instead of presuming to instruct his patients on how they should behave in a nice, non-threatening manner at all times, imagine if this doctor spent the time and energy to train his colleagues on how to better care for patients with chronic conditions. Imagine if he taught his colleagues to respect the patient who comes in with lists and questions. Imagine if he sent this letter to his colleagues and encouraged them to examine their own attitudes and misconceptions about chronic illness and disability and to educate themselves to provide better care. Just imagine.