Tag Archives: Disability

Awesome free resource!

I am so thrilled with the free books available at Herperian.org. They are designed for ease of use and medical accuracy, and take into account limited resources in remote locations. Each of the books is available in multiple languages.

squatting position for pushing stage

I downloaded “Where There Is No Doctor”, “Where Women Have No Doctor”, and “Book for Midwives.” I haven’t had time to read them completely. Each one is more than 500 pages! I glanced through the midwifery book first, and was thrilled with what I saw. The section on the second stage of labor discourages frequent cervical checks, for example. It also has illustrations of alternative pushing positions, or in this case, physiologic pushing positions. The section on breastfeeding has accurate, non alarmist but very true information that formula can be harmful, including an illustration of an emaciated baby with diarrhea, warnings about unclean water sources, and the valid point that formula companies use predatory advertising practices to sell their product.

“Where Women Have No Doctor” has some overlap. There is a great section on abortion, with nonjudgmental language, and emphasis on safe abortion and management of complications. the chapter begins with reasons why some women choose abortion, and the first one is “She already has all the children she can care for.” Many people ignore the fact that most women who choose abortion are already mothers, and in developing countries with high maternal mortality rates, there is real danger to their already living children if their mother has an unwanted pregnancy. The midwifery book has a training chapter on manual vacuum aspiration.

Safe abortion is a safety net

Both books have good sections on family planning. Even though they are designed for practitioners in remote areas and perhaps minimal training, there is a good balance between necessary actions and not overstepping and perhaps causing harm by doing interventions with a lack of training. For example, the section on IUD insertion states that insertion can cause injury or infection, and should be inserted only by someone who is trained, but does not have alarmist contraindications. And, the book warns against putting in IUDs without permission, and the right to refuse an IUD.

The women’s health book also has a nonjudgmental section on sex workers, with information on risk reduction and negotiating condom use. It also has a section on women with disabilities.

I downloaded the Spanish version of the women’s health book. I figure I can read it to improve my medical Spanish, and I may be able to use it as a translation tool.

OK, I have gushed about the books enough. Go check them out!

Thanks, KK!

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Reply turned post, Trisomy 18 and mental masturbation style

I can get really frustrated by people who enter into philosophical arguments about serious medical ethics questions online. Many of these people have a definite agenda, often controlling access to abortion, but try to couch it as some sort of intellectual exercise. Many of these commenters are men who toss around large words like “autonomy” and “qualitative determination.” This happens all over the interwebs, and I know better than to spend my time hunting down every blowhard that litters a comment section with his ideas on viability and fetal rights.

However, I clicked through a link on my Washington Post headline newsletter on Trisomy 18, since it is a topic that genuinely interests me. Presidential candidate and notorious crusader against contraception and abortion Rick Santorum has a daughter with Trisomy 18, one who is questionably lucky to have survived the few years she has, and has been hospitalized yet again. I was generally pleased with the accuracy and tone of the article. I hesitantly stumbled into the comments section, and then happened upon a perfect example of what I like to refer to as mental masturbation, from a commenter named “johnbmadwis”, which he wrote in response to a comment drawing the logical connection between the suffering and medical expense of Santorum’s daughter, and his position on the ability of other families to choose this road for themselves:

But haven’t you just made Santorum’s point and fueled the fire of the pro-life proponents? That is, the pro life advocate’s long held belief that abortion rights advocates are not really talking about rape and incest, but rather personal evaluations of the quality of life of the fetus or externalities such as heartache and expense. Regardless of the condition of the fetus, pro life advocates would say society has a moral interest, they’d say imperative, in preserving the life of such a fetus from individuals such as yourself, who may want to terminate that life due to such condition. At what point, if any, does that societal interest give way to individual autonomy? Would you truly advocate for the ability to terminate that life after birth? in the last weeks of pregnancy? 3rd trimester? viability? Whatever the point, what is the guiding principle? Individual autonomy? Quality of life? (determined, assuredly, by one other than the one whose life is at stake – so, whose individual autonomy?) at what point does one achieve individual autonomy? Does a fetus have individual autonomy At some point the life of the fetus does, presumably, outweigh the individual’s autonomy, right? When? Is individual autonomy equally valid if it were exercised for clearly base purposes such as mere inconvenience or desire, say, to have a boy instead of a girl? Who should make that qualitative determination? Society? The individual carrying the fetus. The affected fetus? The personal choice of a couple does affect the life of another human being in your scenario, so, it is reasonable to ask you when, if ever, do you believe that personal choice must give way to other principles or interests?

My reply, which was thankfully limited by a character limit, is here (I added a few hyperlinks to this version, but otherwise it is unchanged):

@johnbmadwis, these questions have been answered by courts and medical ethicists. There is an obvious glaring difference in autonomy between a child who is already born and a fetus, whose existence depends entirely on the mother, whose life is intimately affected and at risk by carrying a pregnancy. Late term abortions (post viability) are extremely rare, and most states have strict limits on the conditions under which such procedures can be performed.

If you are worried about a slippery slope, it is pretty obvious the slope has been tilting towards restrictive legislation limiting all abortion, not just the dramatic but rare cases you bring up. More than 400 bills have been proposed recently in state legislatures seeking to place barriers on access to abortion, from extended waiting periods for all terminations, overreaching excessive requirements for providers and facilities that don’t extend to other, riskier outpatient surgeries, to personhood bills for fertilized eggs.

Trisomy 18 is a serious condition that is considered mostly “incompatible with life.” Not only is the fetus likely to die in utero, but if it survives, it is likely to die as newborn. The article (mostly) covered this really well. (We do know the “cause” of most trisomy 18 – nondisjunction during meiosis II – which is much more common the longer the egg has been in a suspended state of meisosis, i.e. in older mothers).

Santorum’s daughter is lucky in some ways to be a 1% in more ways than one, but this is more than just some sort of ethical masturbation in a comment section of a blog. This issue involves the emotional and physical challenges to the mother. Have you ever carried a fetus, commenter with a male sounding handle? Have you ever had a stranger put their hand on your belly and ask when you were due, when you knew the fetus would most likely die before birth, or soon after? Then there’s the suffering of the baby if it survives, and the emotional toll such care takes on caregivers – do you have any idea what it is like to work in a NICU on suffering, terminal infants? With major cutbacks in personnel in public hospitals, too.

Not to mention the health care dollars arguably misproportioned here. I got to tell pregnant mothers with no insurance yesterday that they had to pay full price, cash up front for necessary basic lab tests. These are mothers who don’t have husbands flying around the country campaigning for president. These are mothers who may and do skip important labs, or prenatal visits, because they have to choose between knowing if they have hepatitis B or food for their existing children. We got to tell a mother who was having her fourth baby and desired a tubal ligation that there was no funding anymore for it. She could pay $1400 up front to the clinic then pay more in hospital fees. Maybe she could google birth control – oh, wait, she probably doesn’t have a computer.

Enjoy wringing your hands about the autonomy of a trisomy 18 fetus. It’s a luxury.

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Autism and obesity, a confounder

The journal Pediatrics released a study recently claiming an association between autism and maternal obesity during pregnancy. As soon as I heard this study being splashed all over the media, I winced. As much as the journalists point out “correlation, not causation”, they also throw out vague warnings about obesity. On NPR this morning, the story was covered as being another casualty of the “rather striking epidemic of obesity”, and, in this article in the Washington Post, despite the lack of causation, the author warns “[s]ince more than one-third of U.S. women of child-bearing age are obese, the results are potentially worrisome and add yet another incentive for maintaining a normal weight, said researcher Paula Krakowiak, a study co-author and scientist at the University of California, Davis.”

Because, it’s all just our fault because of our behavior, right moms?

I don’t think so.

I was already pondering autism and causation recently. It has been an interest of mine for quite some time. Before I knew that I was going to go to medical school, when I got my first job at the first health food store, I was intrigued by the parents of children on the autism spectrum who would come into the store, desperately seeking anything to help. Many were trying gluten-free, casein-free diets, long before the recent gluten-free craze. Many were buying supplements. I was surprised at how many children on the autism spectrum there were. This was in the mid 90’s, and my first glimpse at the burgeoning numbers of children living with this diagnosis. I decided I wanted to work in the field, and help unravel this mystery for these parents.

Since then, my focus has obviously shifted. However, I have two cousin Susans with two sons each on the autism spectrum or with related developmental delays, which were also included along with autism in the study. One is closely related to my younger son’s father, and one is closely related to me. They are not related to each other at all. I know it is just anecdote, but I was already trying to look for a pattern – something they had in common. Why were their children affected, and mine not? I was overweight, possibly obese according to BMI, during both pregnancies. One of my cousins was, and one wasn’t.

Well, this study made things click in my head. There is a confounder strongly associated with obesity that was not looked at in the study. It is also associated with high circulating androgen levels, which have a known association with autism spectrum disorders. And, interestingly enough, both of my cousin Susans have this condition, and I don’t. It’s polycystic ovarian syndrome (PCOS). It is a lot less common than obesity, and would probably make more sense as a causation, both prevalence-wise, and physiology wise. I did a quick literature search, and couldn’t find anything on it.

I am not sure how difficult it would be to do a case-control study on this. It would be easy if I was at Kaiser. It was probably easier to look at weight and height at delivery than delve into gynecologic histories to find if there was any diagnosis of PCOS in the subjects of the study.

Well, trying to do some research on this is a definite possibility. Hopefully in the near future.

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Where real life and future practitioner life meet

So, I got to hang out in the weird interface of being a future practitioner and being a patient recently. I have been getting some tests done because of a weird skin thing I have. Whenever I think I have it figured out, I don’t. If it is all one condition, it has been going on since I was 16, so, it is obviously not an acutely dangerous condition. I have gone though, in my head, diagnoses from being dirty -> fungal infection -> systemic candida -> inverse psoriasis -> something…else? Like maybe erythema annulare centrifugum? Erythema gyratum repens? Granulomatous dermatitis? Mycosis fungoides?

Med studentitis?

Ack. Well, I just got a biopsy done, which was inconclusive, and I also had to go and get my (*ahem*) supposed-to-be-annual gynecological exam, and get various vaccines and tests to prepare for rotations. On my way in the get the check under the hood, I passed a group of what I assume were either physical therapy or occupation therapy students traversing the perimeter of the school, including the parking lot near the handicapped spaces. Many of them were using assisted mobility devices (not sure if that is the correct term) such as different types of crutches, wheelchairs and walkers. I do not think any of these students needed these devices to ambulate themselves, but were using them to see what it was like for their future patients. And, at the same time, testing out the accessibility of our building, which not only houses a huge health professions graduate school, but employs a large number of support faculty and staff. We also share the site with our clinic, which has various medical specialties, a dental clinic, an optometry clinic, and physical and occupational therapy offices.

I was running late, but I had to stop and ask their professor how they were finding the accessibility. She seemed like a great professor (from my 2 minute interaction while we were both negotiating a parking garage with lots of traffic and no sidewalk) and said it seemed to be poor in many areas, including the one we were in. The front parking and front of the building were better, but the majority of the students and patients will be in the garage.

I was so happy to see this particular group doing an excursion like this. I have seen members of these programs on our elevators and on different floors of the building with assistive devices. Sometimes they have real live people with them who have mobility barriers, but not on this particular trip. I heard students complaining about how difficult it was to use a walker for a long distance, and was happy to see them getting real empathetic experience, even if they were not getting direct input from someone who has to deal with this every day. They will get a lot of that in their careers, and I hope this helps them think about mobility and accessibility more holistically.

I also hope the professor and/ or students submit an accessibility report to the powers that be at the university. All facilities should strive to be accessible, but I have an ever higher standard for a location that serves and trains people to serve people who have different accessibility and mobility needs.

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Reply turned post, no line to cross

I have a reply, currently in moderation, at Media Matters for America. On a post about Sarah Palin’s wavering condemnation and acceptance of the term ableist term “retard” as an insult. Rahm Emmanuel: he should resign over it. Rush Limbaugh: It’s satire! Glenn Beck: Silence. Family Guy: Heartless! A kick in the gut.

One commenter thinks that

The creator of Family Guy has used the program to poke fun at political figures, folks with disabilities, and people of fame and pop culture… funny enough this make Sarah Palin the equivalent of a Family Guy trifecta. There is no line to cross if you were on the otherside of the line to begin with.

I replied:

It is how we treat people we don’t agree with that is MOST important, not least important. There is a line to cross – with prisoners, with conservatives, with hypocrites, with the KKK. That’s what separates the good folks from the bad folks. We recognize the lines and respect them.

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Collaboration can be cool

I am almost done with this part of reviewing the chapters for Our Bodies, Ourselves. I was really happy that I was able to recruit some help from trans activists, a disability activist, and a female sexual dysfunction activist with whom to discuss some of the material, to help make it more inclusive. I am also passing on some resources to the editors of websites I find useful that deal with size acceptance, including size acceptance in pregnancy, women of color and lactation, and the like.

Although these topics can tend to be difficult, I am happy I have had a mostly wonderful experience reaching out. Spending time in progressive communities, and finding blogs and websites on these issues in the past helped me work with existing relationships that I was very grateful for, and I built a new bridge, too.

Being an ally can be a good thing, and can be really gratifying and worth it. I know it can be potentially irritating for members of these groups to point out obvious things to people like me (e.g. If you don’t have to mention gender, don’t mention it! When in doubt, leave it out. It’s easier than it seems. Pregnant woman Pregnant patient. See how simple? Edited to add: I in no means want to imply that a physiologically normal birth should be medicalized with unnecessary interventions. My chapter dealt with medical procedures and medical conditions, but the changes I made did not use the term “patient”. It was a quick example with an unintended backlash below.)

But, as an activist / advocate / rabble rouser myself, I don’t want to just complain, and I am sure I am not alone. I want to discuss issues with people who want to improve our culture together. No, I don’t feel like educating everyone all the time, and everyone doesn’t feel like being educated all the time. But there’s a great middle ground where we can communicate with each other. It’s a great place.

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Open call, please share and repost

I am busy reviewing and contributing to the second chapter of Our Bodies, Ourselves that was assigned to me. It is called “Unique to Women” and is about screening tests and medical procedures. I am trying to get through the technical side of writing this: checking on new screening guidelines, new screening tools, and such scientific type things. But, I really want to take into account the needs and points of view of many women, including disabled women, women of color, women from different cultural and religious backgrounds, women who are trans, men who are trans, women who are survivors of sexual abuse and/or assault, women who work in the sex industry, women who are polyamorous, women who are gay, women with piercings and tattoos, women of size, etc.

I am going to jot down items to look up. I already have some ideas. I know of many blogs out there for people with different disabilities, so I can search them for the easy to find encounters-with-medical-personnel horror stories. I know I can find plenty of health care practitioner bloggers out there (you know who you are) and submit something about a code green.

I am going to try to search out other stories on outlets available to me, but considering my short deadline, I would LOVE any voluntary submissions. The deadline is New Year’s Eve. I would love to continue the conversation past that point, but may not be able to submit anything to the publication. I am not a final decision maker editor, just a reviewer and contributor, but I will be happy to link to posts or publish them on here as comments, if people like. Or, you can email them to hilseb at gmail dot com.

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