science

by

What about the “right-to-live?”

I remember when Jahi McMath died—for the second time. 

Senior year of high school, I came across an article about Jahi McMath, a 13-year-old Black girl who was declared brain dead after her tonsils were removed. It was Jahi’s first surgery, and she was scared. She didn’t want to go through with it, but her mom convinced her it would make her life easier (Jahi had sleep apnea, and removing her enlarged tonsils was intended to help). After speaking with the doctor, Jahi consented to the surgery, and she was fine for about an hour afterwards.

Jahi’s blood vessels were unusually close to the surface of her throat; the doctor had noted this in his chart for her, but the post-op staff was unaware. So when Jahi started coughing up blood, they didn’t see it as the alarm that it was, although Jahi’s family did. They repeatedly raised the alarms for her, but no one listened until her heart stopped.

Jahi was declared brain dead; her brain had stopped functioning due to the massive blood loss. In California, brain death is legal death. But Jahi’s family didn’t accept that. Her mother, Nailah, was convinced Jahi was still alive; Jahi responded to some stimuli and questions. Nailah asked Jahi if she wanted to be taken off life support, and Jahi said no through physical movements her mother taught her.

In the long legal battle that followed, Nailah and her family were forced to flee the state with Jahi under threat of legal action and jail time. Nailah’s insistence that Jahi was alive, and refusal to take her off life support, violated California’s medical ethics, so they went to New Jersey, where families can reject the notion of brain death on religious grounds—Nailah technically “kidnapped” Jahi to do this. There, Jahi had at-home around-the-clock medical support from nurses and doctors who were willing to lose their medical license or be shunned from the medical community; the doctors that treated Jahi were treated as quacks by the medical community. In the view of the community at large, you cannot treat a body that is already dead, and although Jahi’s body was not dead, her brain technically was. The California hospital where Jahi had been declared dead consistently disavowed the McMath family’s efforts and actively disparaged them for “desecrating a body.” But they were wrong.

With consistent care, and rogue researchers willing to look into her case, Jahi was able to exhibit signs of life, brainwave activity, and even underwent puberty. In 2017, a neurologist at UCLA independently confirmed that Jahi was no longer “brain dead.”

Jahi died—for the final time—in June of 2018, not even six months after the New Yorker article was published due to internal bleeding from abdominal complications. Despite overwhelming evidence, the hospital that issued Jahi’s death certificate refused to ever accept Jahi’s recovery and overturn her death certificate.

In 2020, I, much like Jahi, was preparing to go into surgery to get my tonsils removed for sleep apnea, just as she had been. Her name haunted the back of my mind in the days counting down to my surgery, but I, just like Jahi, spoke with my surgeon and asked him how many times he had done the surgery, what the risks were, how long he had been a surgeon. I had the insight that a 20-year-old had and a 13-year-old didn’t, but we were in the beginning of a pandemic, in the middle of the shutdown, and my mom wasn’t even allowed in the waiting room with me. Though I was nearly certain I would be fine (my surgeon routinely did much more complex and precise surgeries, like removing tumors that had grown into the blood vessels of the throat), I was alone when I frantically pulled the anesthesiologist aside and had to shamefully admit that I had been taking quinine pills until yesterday morning, a stupid superstition I had bought into as a way to stave off a Covid infection.

Quinine, for those unaware, is an herbal supplement that used to be used as a “cure all” back in the days of the Black Plague and the Spanish Flu. It didn’t work back then, but I’m a big believer in the placebo effect, and I needed to take something to put my mind at ease. One of the side effects of quinine—that I didn’t know until the morning before my surgery when I actually read the bottle—is that it can thin your blood. This makes you a higher risk for surgery; you’re more likely to bleed uncontrollably because the blood is much harder to coagulate. The bottle said to stop taking quinine two weeks before surgery. Feeling like I was going to cry, and possibly even about to die, I waited anxiously to be taken back and prayed that I would wake up afterwards.

Obviously, I did, or I wouldn’t be writing this right now. But I’m aware how lucky I was, and am. Jahi’s case is in direct opposition to Terry Schiavo’s: Terry Schiavo was a White woman declared brain dead who the hospital refused to stop treating, whereas Jahi was falsely declared brain dead and refused further treatment. Jahi’s family noticed this too; they knew if Jahi had been White, she would have likely received the attention she needed, and even if she had still been declared brain dead, her family’s choices would have been respected. Having come after both of them, and being light-skinned myself, I know my family would have had the respect and space they needed to make whatever decision for me they felt was right if my surgery had gone wrong.

Still, it haunts me; Jahi’s story is barely told outside of fringe medical pieces, but Terry Schiavo’s is well-known enough to be casually referenced in feminist writings. Who gets the right-to-live? Who is allowed to die? Why are our bodies’ needs and wishes ignored depending on the kind of body we inhabit? I hope Jahi is resting peacefully now, but I carry the anger and fear of what was allowed to happen to her.

by

The Most Common Augmentation

While attempting to define what a cyborg is in class, I was struck with inspiration for a discussion topic on the blog. Fast forward two weeks and I had completely forgotten it, racking my brain for what I wanted to write on. I knew I wanted to write on cyborgs and how people don’t realize how common they are, but I couldn’t remember the specifi-It was memory!


http://www.putlearningfirst.com/br/grape/cyborg1.jpg 

Continue reading →

by

Fan Fiction and the Tourist Approach

Because a bunch of people have asked, here is a link to my final paper on mpreg, or male pregnancy fan fiction. Please be gentle- it’s not a prefect paper, and only scratches the surface on this subject, theoretically and otherwise. In the end, fan fiction represents a fascinating place for intersectional theories to do their thing- I wish I had more time to dig deeper on it.

by

Self-Diagnosis

According to a “recent study,” conducted by a company that maintains an online self-diagnostic tool and then misinterpreted by some website on the internet, “1 in 4 British women has misdiagnosed themselves on the Internet.”  Mind you, this wasn’t just posted on any old internet, it was posted on the Internet, so it’s totally legit, guys.  I believe it.  (By the way, Jezebel has some commentary that, while not problem-free, tickles the funny bone.)

This blog needs more color, so here's a rainbow.

Regardless, it raises some important questions about the role of diagnosis and self-diagnosis.  When overused or used irresponsibly, self-diagnosis on the internet can lead to a lot of unnecessary worry.  It’s an especially big problem in a culture that does not openly discuss bodies or illness, making it difficult to determine what is “normal” and “abnormal” for a body to do.  Female bodies, disabled bodies, older bodies, trans bodies, and non-white bodies, in particular, are susceptible to this kind of worry.  If your body was never “normal” to begin with, how can you possibly know if something is wrong?  If your body has always been strange or mysterious or untrustworthy, when does it cross the line from weird to dangerous, or sick?

I don’t have exact answers to these questions.  I do know, however, that since the majority of people cannot afford to see a doctor every time their body aches or something leaks, and since most female, aging, disabled, trans, and non-white bodies (to name a few) are not given serious consideration in the doctor’s office, the internet is an important diagnostic tool.  Several years ago, for reasons I can’t remember, I found a diagnosis for myself on the internet, and it was a major turning point.  As far as I knew, this was the way that I had always been, but at that time, I started to realize that it wasn’t the way that I would always have to be. It didn’t change my anxiety, but just having a name for it allowed me two conceptualize the phobia and my personality as two separate things.

These people stared at this x-ray for hours before realizing that it was blank.

When I later filled out an inventory or questionnaire, I hit every one of the symptoms.  But I never would have known that these were symptoms without coming across that page on the internet.  How could a doctor have possibly diagnosed me if I never expressed that anything was wrong?

Of course, my story might be unusual, and it might be somewhat unique due to my class privilege.  Still, I maintain that the internet should have a place in diagnosis, since no doctor can ever know a person’s body better than the person themself.  What do you think?  Does self-diagnosis cause more harm than good?  How can the internet be used or changed to improve diagnosis and available medical information?

by

Stress Kills, or “I don’t have time for a body”

At some point this semester I began screaming at my boyfriend, “I don’t have time for a body!” I was having a pulsating migraine, my skin was breaking out, I had had no sex drive for weeks, and had an endocrinologist appointment and blood test the next morning prior to three classes that day. I was having an anxiety attack at 1a.m.

Everyone says college is stressful. I have found that no longer having the body of a twenty year old makes it exhausting. Running around a hilly campus, trying to get to class on time, parking about a mile from any buildings. All of this physical activity is also time consuming, adding stress to days packed with classes, work, homework, making dinner, buying cat food, paying bills, keeping in touch with friends and family, attempting to relax, and trying even harder to sleep. I often find my inner dialogue about stress going something like: “It’s because I’m a woman” or “It’s because I’m not upper middle class.” I have many found my stress triggers to generally be gender or class oriented.

I found the following documentary on stress very interesting. The director, John Heminway posits stress as not only as detrimental to mental health, but as someting that can kill the body over time  through exposure to dangerous levels of stress hormones. It also argues that stress levels are relational to class structure, with lower rung workers experiencing higher, and more deadly, levels of stress hormones. The documentary follows Stanford University Neurobiologist Robert Supalski in his studies of stress hormone levels of baboons in Kenya. He measured both adrenaline and glucocorticoids in these baboons and found differing levels according to the gender and social class of the baboons. The non-alpha males have higher stress hormones than the alpha males. When most of the alpha males died off due to tuberculosis infection, the stress levels of all the other baboons in the group went down. This documentary is very much worth watching, I believe all parts of it are on youtube and hope you can check it out.

by

Design improved by (dis)ability

So we’ve talked quite a bit about how architecture and spaces treat (dis)ability as an afterthought, defining a norm and making often weak attempts to accommodate those who do not fit inside the normative box.  But this doesn’t always have to be the case. There are some really smart designers who have flipped this script- collaborating with people of different abilities in order to come up with design that is beneficial to everyone.

Take for example the OXO Good Grips line of kitchen utensils. We’ve all seen them- peelers with really thick handles, unusually shaped can openers. Cool looking, but not the norm in utensil design.  It turns out, this entire line was designed in consultation with arthritis sufferers, in order to create kitchen tools that they could easily and comfortably use at a reasonable price.  Now, OXO Good Grips is one of the best selling brands of kitchen utensils around the world. A simple thought- making an easier to use potato peeler- leads to better design.

But what about architecture? How can it be impacted by collaboration across abilities? At DC’s Gallaudet University, which specializes in educating those with hearing impairments, new buildings are showing innovative design meant to help the deaf that could end up in your new office building or classroom.  Walking and talking is one of the cornerstone experiences of college life- but this becomes a bit trickier when you’re speaking a language that is visually based.  Buildings offer numerous obstacles to these conversations- narrow hallways, doors that have to be opened.  Gallaudet is creating buildings with wider hallways and wider sliding doors to better accommodate students’ social life.  Eye strain, again a common college problem exacerbated by needing to use your eyes to take in every second of classroom interaction, is dealt with by thinking of light sources and room color.  Each innovation is driven by thinking of (dis)ability first, and each one something that could be valuable to the world at large.

Is this a next stage in industrial design? Instead of trying to make a product comply to Americans with Disabilities Act standards, should we instead focus on making products more inclusive from the start? It’s a bit of a rhetorical question, sure, but the real question is, why aren’t more people thinking this way?

by

Sharing the Experience? The Menstruation Machine.

Image

To the phenotypical male, menstruation will always be a mystery that we will never experience.  Or is it?

Growing up as a boy, the only information I received about menstruation was by eavesdropping on girls whispering to each other, or the odd incomprehensible schoolyard insults about PMS.  Television provided images of pads (with wings!) that women were supposed to wear in order to catch an unnaturally blue liquid, but no indication of where those pads went, or what that odd liquid actually was. Sitcoms taught men to just stay out of the way during “that time of the month,” lest all hell break loose.  It wasn’t until many years later, when I screwed up my courage and started to ask questions of my partner, that I was able to come to understand what happened.  Sort of. I mean, I could be sympathetic, but how can one be empathetic of a bodily process you can never experience?

Performance artist Sputniko! (aka Hiromi Ozaki) seems to have developed a solution of sorts to this conundrum.  The Menstruation Machine, a gleaming chrome device that straps to the abdomen, is meant to simulate menstruation for those who would not otherwise experience it.  Prior to putting it on, a vial inside the machine is filled with the wearer’s own blood.  Once on, the strap around the abdomen simulates cramps, and the vial inside slowly drips blood into the wearer’s underwear.  Sputniko! created a music video of Takashi, a drag performer, wearing the machine out on the town and experiencing cramps and bleeding:

On the surface, this seems like a really interesting opportunity for someone who doesn’t menstruate (whatever their gender identity) to experience what goes on during this part of the menstrual cycle.  But in the end, it is just a simulation, and like all simulations, it can be stopped.  And it has limitations- it does not simulate the anxiety of a late period, or account for variations in severity over time.

Obviously, Sputniko! created this as an art piece to stimulate discussion.  Can such a machine be used to bring about empathy in those who don’t menstruate? Or would it create a sort of false empathy because the experience of menstruation is a fully embodied, ongoing experience? I find myself sort of in-between these two stances. What do you think?

by

It is interesting to watch the way prescription drugs are consumed in America. We tend to obsess over the benefits of prescriptions and gloss over the possible side effects. Every commercial for a prescription drug is required to announce the side effects, but who can actually hear them? There is usually a man with low-pitched voice racing through the possible inconveniences as if they are minor possibilities.

Apart from a 4 hour erection, Viagra can also cause loss of vision, diarrhea, dyspepsia, and dizziness. It can also be fatal when taken with other drugs, especially drugs for heart related health problems. This information is not commonly discussed. Every commercial has the side effects mention as mandated by the FDA. It is the consumers responsibility to understand these side effects, ask questions, and take necessary precautions. Unfortunately, as a society we are more eager to reap the benefits then we are to take caution over the adverse effects.

I felt that Viagra was a great attention grabber for this post, but this is greater than the erection verses vision debate. There are so many prescriptions out there for a wide range of serious and minor illnesses that have side effects of varying degrees of significance. We have become comfortable putting chemicals in our body for self medication or as instructed by a health professional without thinking about the consequences. I don’t remember ever pausing to think that my aspirin can give me stomach ulcers before consuming it. Whether it is an over the counter drug or a prescription medication, we need to pay closer attention to the warnings labels, especially if the drug is a personal desire and not necessary for health maintenance, like Viagra or Latisse.