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The medical consequences of being told you’re terminal when all you are is disabled

Many thanks to the Crippled Bitch, Emily Wolinsky, for permission to reblog this.

I beg you to consider this analogy:

Imagine two children.

The first child is a child with a severe nut allergy. Let’s call her Lilianna. Lilianna, 95% of the time, is very healthy, happy, bright, and capable, but as soon as she encounters a nut, nut dust, or nut oils, this child goes into convulsions and is minutes away from death. This child needs life-saving injections delivered immediately to her system so she won’t convulse and/or go into anaphylactic shock. Lilianna needs accommodations at school, so teachers and staff are aware of her allergy. Special arrangements may need to be made during the day and after school so this child can safely participate and attend in activities. She may need to go to the doctor on a regular basis for treatments and therapies. Finally, Lilianna will have to learn to read labels, prepare and cook food differently, and advocate for herself for the rest of her life.

In the case of Lilianna, would you say that she is:
A. Terminally ill
B. Disabled

The second child I want you to imagine is a child with a severe neuromuscular condition, like Spinal Muscular Atrophy. Let’s call her Sally. Sally, 95% of the time, is very healthy, happy, bright, and capable, but as soon as she gets a chest cold, she has a hard time coughing due to weakened muscles. This child needs life-saving pulmonary therapies delivered immediately to her respiratory system so she won’t drown in her phlegm. Sally needs accommodations at school, so teachers and staff are aware of her condition. Special arrangements may need to be made during the day and after school so this child can safely participate and attend activities. She may need to go to the doctor on a regular basis for treatments and therapies. Finally, Sally also uses a wheelchair and other equipment that allows her to move and be comfortable. She will have to advocate for herself for the rest of her life.

In the case of Sally, would you say that she is:
A. Terminally ill
B. Disabled

Now consider your two answers. If your answer is B (disabled) for the first child, Lilianna, and A (terminal) for the second child, Sally, you are in the majority and I’m very sorry to say, but you are ableist. I know, it’s hard to process that, but if it’s any consolation, it’s probably not your fault. After years and years of skewed media, pity pornography, and a telethon about kids with neuromuscular disabilities (NMD) deemed terminal in order to raise money to “save” them with a cure, most people have arrived at the wrong answer to the questions above. Because of this stigma based from a foundation of medical model induced abelism, poor Sally is now facing an infinitely harder life as an adult than Lilianna is.

Fast-forward to little Sally’s first sexual relationship.

Yeah, I said sexual. Jerry’s kids grow up and have hot sex.

Sally grows up and starts attending college. She meets a guy and they hit it off so well that soon they are like most college kids these days and having horny sex. All of Sally’s friends tell her to go to Planned Parenthood to get on birth control. Oh wait, scratch that. Planned Parenthood is a dirty word for some reason, but that’s another essay for another time. All of Sally’s friends tell her to go to see her gynecologist to get on birth control. Sally doesn’t want to get pregnant and she’s embarrassed to talk to her parents about this guy she’s fooling around with, so she makes an appointment and takes one of her girlfriends with her to see the a gynecologist for the first time.

Guess what happens?

The doctor enters the room and completely looks past Sally to her friend. When her friend tells the doctor that she’s at the office to accompany Sally, the doctor looks at Sally dumbfounded. Sally explains that she has Spinal Muscular Atrophy, which is, “kind of like Muscular Dystrophy”. She claims that even though she uses a wheelchair, is 65 pounds, and can barely move, she is sexually active and trying not to get pregnant. The doctor’s mouth drops and he thinks back to all those years of watching the Muscular Dystrophy Association’s Labor Day Telethon. Wait, he thinks. Aren’t these kids supposed to be dead already? Aren’t they terminal? He figures Sally is an unusual case.

The doctor regains his composure and hands her an office dressing gown and a cup, tells her to go to the bathroom and provide him with a urine sample, return to the room, undress and get on the table. He says he’ll be back in the room in a few minutes. Sally, already incredibly nervous, feels panic take over. She looks at the doctor and explains that she needs assistance getting on the toilet and the exam table. The doctor has a terrible back, and young Sally looks fragile with a back curved into an S shape and tiny bony frame. He’d hate to try and lift her onto the table and hurt either of them. The doctor looks at her friend. The friend shrugs. Sally states that her friend cannot lift her. By this point, the doctor realizes that he’s just going to have to go by Sally’s word. He asks her when her last period was. He asks her if she has used condoms. He decides to write Sally a prescription for birth control and tells her to start taking it the Sunday after her next period ends. He tells her that they can do her pelvic exam another time and suggests that next time she bring someone who can lift her on the table.

Three years later Sally finally gathers up the nerve to return to her gynecologist. Yes, the doctor prescribed her birth control for three years without ever doing a pap smear; ignoring protocols, but figuring that sooner or later this fragile girl would probably be too sick to have any fun. But when his nurse practitioner came into his office one afternoon and told him that Sally had called to make an appointment for irregular bleeding, after checking his file and seeing zero history other than a birth control prescription, he remembered her. This time he knew she would need to be examined. He got on the computer, went to the search box and typed, “muscular dystrophy pelvic exam” – nothing. But he did see “spinal muscular atrophy cure”, “SMA angel”, and “make a muscle”. He typed in “muscular dystrophy pregnancy” – nothing. But he did see “donate to save a life” “girl with terminal muscle illness chooses heaven”, and “live unlimited.” He figured he’d wing it.

Twenty-three year-old Sally arrived at her gynecologist’s office a few days later with her boyfriend and a personal care attendant. Her doctor’s office was still on the second floor and the elevator was still rickety and small. It smelled like the 1970s. When she got off the elevator and rolled to the door at the doctor’s suite, she tried to open the door, but it was very heavy and no automatic openers were visible. Thankfully, her attendant held the door open. She drove into the office and navigated through the tight waiting area with chairs pushed so closely together that strangers’ shoulders were overlapping. Sally approached the receptionist window, which was three feet higher than she was. The receptionist started asking her attendant questions and Sally spoke louder. The receptionist handed her boyfriend a clipboard and told him to fill out Sally’s information for her. Just a few nights before Sally had celebrated her acceptance into a top law school, but the receptionist proceeded to call her “sweetie”, and spoke slowly when addressing her. Sally knew right away that no one here had ever had disability awareness training.

45-minutes later…

Sally’s boyfriend considered himself a patient guy. He loved Sally, but it was a little irritating that he had to take the afternoon off of work in order to lift her onto a table. He didn’t tell her that though because he knew she was more than worried about the bleeding. When Sally was finally called back to the exam room, he realized that the five of them couldn’t all fit in the room. First, he and Sally went in. They finally got the wheelchair angled right so he could cradle lift her out of her power wheelchair and put her on the table. Her attendant had to climb over the chair in order to move the wheelchair out of the room. Her boyfriend had to hold her still on the tall narrow table so she wouldn’t fall off. Sally was sweating and shaking from nervousness, like a bird captured in the palm of a human hand. Her attendant quickly came over and both of them managed to get her undressed. She couldn’t lie flat on her back and needed to rest on her right side facing the wall until the doctor was ready to see her. By the time she was in a resting position, Sally asked her boyfriend to leave the room. She was in tears. She said she wished she didn’t need him to lift her because she really wanted to, “handle her woman business alone.” Sally’s attendant shooed him off and he went out to wait for their call. While he waited, he secretly checked his Tinder app.

The minute the doctor began Sally’s exam he knew something was very wrong. The bleeding was bad. Her bloodwork from the lab had markers. She was in agony. Both of them were visibly uncomfortable. The doctor knew the probability of running more tests, especially after identifying a small lump in her left breast. He didn’t want to scare Sally, so after she was dressed and back in her chair, he quickly listed off a number of labs and diagnostics she would need to get immediately. He referred her to his trusty diagnostic lab that he had used for the last twenty years and said they would take good care of her. When Sally left, she had a folder full of referrals. This meant more doctors’ appointments. Her boyfriend said he couldn’t take off work again. Her attendant said she would go, but didn’t think she could lift her on the table safely. They’d work it out somehow.

Two weeks later, still bleeding, Sally exited another elevator that smelled like the 1970s. She went down another hallway decorated in dismal brown colors, which led to another heavy wooden door. Her attendant opened it. Sally recognized everything even though she had never been to this lab before. This familiarity was enough to make Sally downplay her symptoms that she listed on the form the receptionist handed to her attendant from “often” to “rare”. When she finally got into the mammogram imaging room and saw the machine that required someone to stand and lean into, she flashed back to three years before at the gynecologist’s office. The nurse handed Sally her exam robe and told her to undress. She asked her if she needed help standing. Sally looked at her attendant and looked back at the nurse. She wanted to scream with frustration, but this familiarity became the magical cure that she always needed. She said that she wouldn’t be able to do the exam because the equipment wasn’t accessible. The lab technician stared at her dumbfounded. “Well, why don’t we get you to another lab, Sweetie?” The tech told her all about this lab sixty miles away. Accessible public transportation could drop her off forty-seven miles away.

Sally smiled and took the cure instead.

Sally went home that night, shredded her documentation on the different types of cervical and breast cancers her doctor gave her, cancelled her future appointments, told her attendant that she’d be fine, told her boyfriend that the appointment went well, and bled daily until she died of cervical cancer six months later.

At her funeral, located at an inaccessible church, all the people who stood to speak about little Sally said that she was a SMA Angel who fought a brave fight against a terminal illness and lost like so many other angels. As mourners walked out of the funeral home, they wrote a donation check for a cure for Muscular Dystrophy.  One mourner, a friend Sally made in high school, made sure to avoid the bowl of nuts sitting on the table near the donation envelopes as she headed toward the door.

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