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CrippledBitch
CrippledBitch is Emily Wolinsky, a disability rights activist with a neuromuscular disability (NMD); who fights ableism with a plastic keyboard instead of a sword.
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Disabled Trump Supporter Drowns In Toxic Sludge Made of Internalized Ableism
A flashback punched me in the gut this morning when I read the op/ed in Time.com, “I’m a Woman with a Disability who Voted for Donald Trump. Here’s Why…” by the culturally “assimilated” Melissa Ortiz. I recalled my first months assimilating to living in Austin, Texas in the summer of 1999. I moved to this red state as a newly minted Edinboro University graduate with a hot commodity B.A. in English literature (paid for by Federal student loans), and started applying for that first “real job” which would make my parents proud and ultimately pay the government back with interest.
Poor as poor could be, I existed thanks to a monthly Social Security Income check for $700 combined with credit card debt and meager savings (the Social Security Administration only allows recipients to have up to 2k in savings). I lived in a rent-reduced Section 8 apartment complex for the elderly and disabled. I got to my job interviews via the city’s accessible public transit system made possible by a recent mandate (ADA) to make public buses accessible. My power wheelchair was bought and my body, which sat in that power wheelchair, was dressed by a Personal Care Attendant (PCA) paid for by the State of Texas Department of Health and Human Services. While I didn’t have the words WELFARE RECIPIENT or SYMBOLIC EMBODIMENT OF ENTITLED or PRODUCT OF PROGRESSIVE AGENDA SOCIALISM tattooed on my forehead, I might as well of had these tats at the time because for some folks, the markings were obvious.
And there I was, on a 100 degree day in the summer of 1999, sitting and steaming myself in the odor of sweat and poverty at a bus stop in downtown Austin, waiting on the #37 to take me within walking distance of my one-bedroom accessible abode, when I saw out of the corner of my eye a small, shiny new, minivan parking nearby. Minutes after parking, a slick ramp slowly unfolded out of the side door and dropped gently to the sidewalk with a tap.
Almost two decades ago, assistive technology like a ramp van with hand controls did not come cheap or easily. To me, the idea of driving a van of my own existed in science fiction novels and shows like Star Trek. When a woman, instead of a wide-eyed alien, pushed herself out of the shadows of the air-conditioned van, my mouth dropped open. This woman represented everything to me - freedom, independence, power. She instantly transformed into my hero, my mentor, my far into the future Facebook BFF…
I pushed my power joystick forward, ditched the chance at catching the next bus, and drove toward this professional looking and wheelchair using goddess with the magic carpet ride glimmering in the heat behind her.
“Hi! Your van is wonderful! Wow!”
The Goddess rolled her eyes, sighed with a push of her wheels in the direction of her destination, and ignored me. But I couldn’t let her go, so I tried to make eye contact and asked, “How did you get it?”
Her head spun around like that kid from the Exorcist and she spat words of green pea soup at me.
“I got a JOB and PAID for it.”
And then she sped up and rode into the sultry stinky night.
All hopes of peer-to-peer support and mentorship squashed, this future Trump supporter wheeled away leaving me covered in a sludge of shame. I didn’t have words to label her reaction and my embarrassment at the time, but this, I’ve since realized, was one of my first adult encounters with ableism and internalized ableism dished out by a peer with a disability.
When a fellow cripple, who should get the struggle, puts you in a place of feeling shame for assumed entitlement, it hurts more than when able-bodied politicians, family, friends, employers, etc. do it. The sludge from the Temporarily Able-Bodied (TAB) washes off more easily. Most people with disabilities realize what people without disabilities don’t. TABs don’t comprehend how difficult and expensive it is to live life with a disability when most housing and transportation isn’t available or accessible (Hey, Uber, I’m talking to you). TABs don’t understand that due to this Americanized expectation for perfection, how limited job, social, and professional advancement opportunities are for the disabled (our unemployment rate is twice that of the TAB). And TABs definitely don’t get that every disabled person I know would happily trade a life of poverty for a life of potential and privilege if it were easy to do just that. Not once in my 39 years have I ever encountered a crip who proclaims, “I love, love, love living in extreme poverty and taking from the tax payer!”
It was naive of me to think that this woman would not want to mentor me or help a crip sis out. It was naive to think that she didn’t laugh, but rather did a fist pump when she heard the condescending saying, “The Only Disability is a Bad Attitude”. In 1999, the Trump supporting cripple didn’t know she’d exist yet. Hell, Texas’s very own Governor, Greg Abbott (deemed by disability activists as the “Anti-Gimp”) had only been collecting his $14,000 per month in damages for the accident that caused his disability for a little over a decade. It would be years before he would take high office and vote to cut spending for Texas children with disabilities and mental health supports because if he could do it (with 10 million+ in damages) we could do it! It would be years before I realized that internalized ableism slices so deep that wounds caused from it never heal. These crusty wounds are filled with foul ooze that contaminate all it touches. Internalized ableism is toxic sludge inching over the treads our wheelchairs leave; it made its way to my bus stop on that very hot summer day in 1999; and it oozed into Time.com today.
Speaking of today. Today, thanks to this big and complex government that at one point in my life qualified me as disabled enough to receive income, housing, healthcare, and vocational rehabilitation assistance, I now am a full-time employee of the state of Texas and pay income taxes that fund all the programs I once used and a few I still use. I now pay property taxes because I’m a home owner. I get to work every day because I drive my own modified magic carpet ride with hand controls. And I’m proud to pay the government back while I still am physically and mentally capable enough to work a job. I’m happy to pay interest on my student loans just like millions of Americans. I quite enjoy knowing that my tax dollars fund healthcare for people who can’t afford health insurance and need medical equipment like I use. What comes around should and does go around.
And I won’t be ashamed as my disability progresses and I need to go back to that system no matter how much the people who run it try to shame me for needing it. The people who dish out the sludge, who ignore our worth despite imperfection and our struggle, who proudly cast their vote for politicians who would rather we didn’t exist or assimilate to a culture of ableism and subtle genocide, will continue to exist and thrive in the Time of Trump. And all I can do is this:
I can be there for the young woman at the bus stop on the hot day who compliments my van and asks me how I got to this place of temporary privilege. I can smile and write down a name or two of someone who once helped me. I can offer her a ride home if I’m able. I can tell her to never be ashamed because most of us have been there and those who haven’t will probably get there someday.
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A Eulogy (for the Ableist Parent I've Always Had)
So recently, a blogger's ableist poem circulated around the disability community reinforcing the tired idea that disabled children are basically a huge disappointment to their parents. And once again, like clockwork, this crap went viral. The idea that these poor, poor moms are stuck with us abnormals is just gross, and it's the reason why kids with severe disabilities commit suicide, or are murdered, or just grow up isolated and afraid to live their lives. A parent's ableism destroys.
This mother's poem entitled, "A Eulogy for the Boy I Never Had" rambles on about how she wished she had a son who could be an athlete, she could have a conversation with, and hike with. Blah blah blah. I get that parents want to process the loss of their "normal" child, but to publish a poem like this is so masturbatory and insulting that it deserves a reaction. So guess what? I decided to react.
I copy-changed her stupid poem and wrote, "A Eulogy for the Ableist Parent I've Always Had". To be clear this poem is NOT in any way, shape, or form about my parents. My parents are great. This is in the voice of another child out there; the child that will eventually get to read mommy's blog and see what she really thought of him.
Here's my poem:
A Eulogy for the Ableist Parent I've Always Had
I gave you the book "Too Late to Die Young" after I was born.You said you liked it. I couldn't tell. I read it to you when you were here visiting and the way you stared inattentively, it let me know that you forgot.
You never smiled. It was kinda depressing, having a miserable parent. I felt bad admitting to my tolerant friends that you were always this downtrodden, always this sad.
You felt I was a burden from my diagnosis at 18 months old. It was like a conviction, a long sentence. I felt guilty telling people when they asked me how many times you woke to have me turn in the night.
You did not praise, not easily. I felt the sting of inferiority, of being parented by someone who already gave up when my friends posted videos of their parents cheering at their games. I held your hands as you cried, complaining, of my disability and wondered when you would institutionalize me.
And then you called my body broken, not really whole. You said I was terminal and gave examples of my weakness here and there. I felt embarrassed when the media or other parents viewing CNN would look at me with pity. I felt horrified when the doctors said my quality of life was destroyed, that you (and I) had suffered long enough.
When I learned that you were writing your own eulogies, I started to map out my future. Under no circumstances would you be allowed to participate in my celebrations. Selfishly, I didn't want to spend every weekend being compared to children who were normal and I didn't want to spend every last year of my life insufficient.
I planned to show you I could live. To teach you how to accept. To read to you from my favorite disability rights books and plays. I hoped you'd be equal parts inclusive and advocacy inclined. I promised myself that I'd dust off some independent living curriculum, crack my knuckles, and show you who Ed Roberts was. I committed to taking you places to see people with disabilities as artists, athletes, adventurers, and musicians.
I yearned for the day you would start to love me for me. I wanted you to rush from the crowd of sympathetic parents at the end of the blog and tell me about your new understanding and acceptance. But when that essay came and went and our communication was restricted to mono-syllabic responses, the realization started to set in. Perhaps my parent, this parent, was different from the one I had imagined.
Still I craved the day you started to get me. I wanted to take you shopping to pick out new glasses and new frames and a treat to comfort you for the coming transitions and to award you for your ability to see me as normal and strong. I wanted to drop you off at your friend's house and not be called special or inspirational, as you quietly shook your head no. Nostalgic for the parent I never had. But when that came and went and the insults and therapy appointments and angry calls and GoFundMe donations started to mount I knew, somehow, that the mourning was real. That the profound ableism had set in and wasn't going anywhere.
The Accepting Parent I Never Had was the parent of my wildest imagination. She was loving and open and witty and feisty and not perfect by any means. He was protective but allowing. Kind but demanding. She was crushed by injustices and felt an inherent need to be and do good. He was insistent that I live the life I want to live and that I choose my own path. She would love me no matter what path I took and fall in line when they needed to.
But I never had that parent.
My parent is very different from the one I imagined I'd have. I'm nearly fourteen and I know now, with almost certainty, that we may never have a conversation. I may never not feel like I ruined your life. I may never be given autonomy. I may never feel like a fundraising tool for you to gain your freedom. I may never get the support I need to want to live. These concepts may never make sense to you - or, rather, may only be important to me.
We may never have a relationship. You may never realize I'm worth it. Or here reading your poems. Or listening to you regret me.
What I know about the ableist parent that I did have is that some people are not meant to raise children with challenges, but we don't have to be stuck like this forever. We will go our separate ways in life. I will find people who accept me and encourage me to keep living. I will find a parent who may not have my blood or genes, but who will fight for me and believe in me. You will always remain there, and I'll remain here.
The Ableist Parent I Always Had should shut up now. I only imagined you anyway.
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“Hey, Speedy!” grrrrrrrrr
I have always had a huge problem with the following greeting, "Hey, Speedy!" or the declaration upon seeing me, "Slow down there, Speedy/Speed Racer!", or the question, "Hey there, Speedy! Wanna race?", or the ever so (not) clever/hilarious: "Watch out! You're gonna get a ticket!" All of these various forms of patronizing comments bother me a lot. These sayings especially irk me when said by a fellow co-worker. Now, I realize that more often than not these statements do not mean to sound outwardly patronizing, but as a person who cares about language and the psychological context from where this language derives, I can promise you that it's very debasing to use these phrases, especially around a disabled person you do not know well or know within a professional setting. Ultimately, I prefer to be addressed by my given name - Emily. I do not prefer to be reduced to a fast wheelchair, which is what this has come to feel like. Today, though, something happened that made me thankful for working where I work and with the caliber of professionals with whom I work.
After, once again, waiting to use the one accessible restroom stall in my building (this time it only took 20 minutes), a coworker came into the restroom as I was leaving and said, "Hey, Speedy!" While most days I'll shrug it off and smile, today my face must have dropped and I could barely get out a hello. I was angry. Angry that I couldn't use the restroom in my workplace. Angry that a coworker, who barely knows me, can only see me as a "speed racer" and not as a professional. And I was hurt, but I didn't let my professional peer deter me from my original point of frustration.
I took the elevator up to the building manager's office and proceeded to get into a long conversation with her about my restroom inaccess issue. Thankfully, the conversation went really, really well and our building manager was incredibly receptive and open to making some changes that may influence change.
Upon returning to my office, I had a voicemail message. Surprised, yet again, and taken aback by what I heard, the co-worker, who had addressed me in the bathroom, apologized for calling me Speedy. She explained that she used the term as a term of endearment for family members, and it was more like a gut reaction when she saw me. She said she wasn't sure if she did offend me, but wanted to apologize and tell me that she wouldn't use that term again.
I almost cried.
It is so rare that an individual sees where he/she goes wrong and takes the time to evaluate their use of language. Never in my life (after being called Speedy probably over 1000 times) has anyone apologized. I called her back immediately and thanked her for her apology, as well as accepted it. It meant the world and reinforced why I love working for Austin Community College.
Image Description: A cartoon drawing of Speed Racer, a famous cartoon character. In the cartoon a boy with a racing helmet and gear (Speed Racer) is running from a sharp looking sports car. The words “SPEED RACER” in big red letters appear in the top corner of the drawing.
#disability rights#accessibility#ableism#disability advocacy#disability#Americans with Disabilities Act
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Evaluating for toilet time is shit
I posted last year on the day of my Annual-Evaluation-to-Verify-Just-How-Crippled-I-Am. My 2016-2017 evaluation happened just a few days ago and I would like to announce that I finally got my "toileting assistance" time increased from 20 to 30 minutes per day and some extra minutes for "feeding". (Wait! Hold your applause!) Unfortunately, because I have a working washer and dryer instead of a bucket outside to wash my clothes in, I can only get 70 minutes per week of help with laundry instead of 120 minutes. And sadly, I couldn't get any time for exercise because I can't walk. (I guess people who walk are the only people who exercise.) Also, Texas doesn't seem to give a shit about the fact that I can't move in bed or position myself at night. Zero minutes there. So all-in-all, it looks like Texas is granting me a total of 47 hours per week of personal care assistance. (Now you can applaud.) In a few more years, as my progressive neuromuscular disability progresses these measly hours ain't gonna cut it, but thankfully I have friends and family who will hopefully not let me end up in a nursing home. (Stop clapping.)
Here I am with two master's degrees, a full-time job, a home, two dogs, a loving man (who drinks diet coke and coffee mixed together), a garden that yields four cucumbers a year, wonderful friends, and I'm president of a non-profit that I essentially volunteer 20+ hours a week for, AND I have to spend hours begging for personal care assistance in order to survive. I'm in a position where I have to get surgery in order to drink more than 20 ounces of water per day so I can pee more than three times a day. I have to feel pain every single night because I can't move in my bed, or fear aspiration due to not being able to sit up and cough while "resting".
This is what I get in a state with Governor Greg Abbott, a man who uses a wheelchair and has a lifelong disability, because he believes that, "the only disability is a bad attitude." Explain to me how this is fair. Explain to me how in a state that is so conservative with "Christian values" how this is humane and decent.
If there were any way for me to get out of this predicament and pay out-of-pocket for my PCAs, I would. It doesn't feel good having to use state resources, but I can't afford to pay my PCAs a living wage because those wages will equal my salary, therefore negating the point of me working, which will then put me on Social Security and I'll require even more government support. (Ever read Catch-22?) I consider myself very fortunate because it could be much worse, and it is much worse for many, many, many disabled folks in the United States and around the world. I know people younger than myself with my same disability who are living in nursing homes right now. I know people who can't qualify for any care assistance whatsoever because they got married and most benefits programs do not qualify you for care assistance if you're married because your spouse is supposed to drop everything and care for you if he/she truly loves you. Right? Right. (By the way, that's a great "selling" point for your online dating profile - it totally gets you laid.)
My disability has taught me many things, but the lesson I value most is that I need to be grateful for whatever I get because it could all just disappear in a flash. Pretty much every person on this earth will end up with a disability at some point in their life. People like me and the "Anti-Crip", Governor Abbott, just got there a little sooner. My hope is that you'll read and share these words with the knowledge that you're going to be in my position one day. What are you going to do when you're told you can only have 30 minutes of toileting assistance? What are you going to do when your spouse has to quit his or her job to take care of you full-time? Ask these questions and then urge your senators and state reps to vote for theDisability Integration Act - DIA because you'll need it one day.
Image Description: A needs assessment form used by Texas Department of Aging and Disability Services completed by hand by a case worker. This form is picture evidence based on an evaluation for personal care assistance hours done in 2015.
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Things to do instead of spending your money on Me Before You
It has been a while since I've published any writing. I've been recovering from a bout of pneumonia and the flu, which I was hospitalized for back in March. Since getting sick, I've lost a lot of arm strength and am dealing with a new normal, which means needing more help and more rest. I've also spent the last months working hard to get my life back to its usual pace and trying really hard not to die. It's kind of ironic that Me Before You, a movie that glamorizes a person with a disability choosing to commit suicide, is the event that brought me out of my writing funk. Rather than rehash all that's been discussed and framed in fifteen million ways about why this movie sucks, I thought I'd take a different spin on this protest and provide you with a list of things you can put your energy towards that will help the world gain a more positive perception on life with a disability.
#1: Don't clutter-up your psyche with stigma and stereotypes
When I was a kid, I remember seeing Steel Magnolias for the first time. Holy crap is that the saddest movie ever! I always tensed up when Julia Roberts' character went into convulsions after her sugar went low (she played a character with Type 1 (T1) diabetes) and when she died due to kidney failure, I cried for hours and hours. After that, every time I met someone with T1 diabetes, I imagined Julia Roberts shaking violently with orange juice running out of the corners of her mouth during a sugar crash, which wasn't fair or kind. In the movie, the protagnonist fights to have a baby and that pregnancy is what ultimately kills her. I always assumed that people with T1 diabetes couldn't have kids, like many assume people with neuromuscular disabilities like mine can't have kids. That movie, based on fictional characters, shaped so much of my perspective on life with T1 diabetes. The stereotypes, the stigma, all that crap, got into my psyche.
Fast forward to after I attended college at Edinboro University and shared a dorm with a whole bunch of students who were quadripeligic, many who had just graduated from extensive rehabilitation related to adjusting to their spinal cord injuries. Knowing what I knew about spinal cord injuries from my friends who lived with them first-hand, I went to see Million Dollar Baby (which is produced by the same company that produced Me Before You). When Million Dollar Baby released in the theaters, I didn't belong to a disability community of advocates and activists to spoil the film for me and, looking back, I really wish I had. At the end of the movie, when the lead character is injured and offered a community college brochure instead of rehabilitation, I about rolled on out of the theater. The blatant inaccuracies, the absolute insult to people with disabilities everywhere, hurt my heart. People were leaving the theater crying, like I did after first watching Steel Magnolias, and I left the theater absolutely enraged. I thought of all the people that just got a "taste" of disability and recovery from injury that was sooooo wrong. I thought of all the parents and friends that would feel good about injecting their depressed kids who acquired disabilities with poison because the "alternative" was "life" with a disability. The thesis of that fictional story hurt us and future quadripelgics so, so much.
Now here we are with Me Before You. A movie that is basically the result of movies like Million Dollar Baby, again reinforcing that people with disabilities can be loved enough to be let go; that people with disabilities have no quality of life; that people with disabilities should feel humiliated and shamed by their very burden that they bring upon others. Yes, there's a hot guy in the movie. Yes, Daenerys Targaryen, a hero from Game of Thrones is in it. And yes, it could be considered as sad romance that pulls at your heart strings, BUT...But. I won't pay money or encourage it. I won't take children to see it. And I will keep talking about it because people should think deeply about these issues and how stories resonate deeply into our psyche.
Suggested visiting: Edinboro University of Pennsylvania's Office for Students with Disabilities
Suggested viewing: "Ableist, Stereotypical, and Offensive" or: Why I Hate "Me Before You" by Dan Harvey
#2: Have sex with a disabled person
Probably one of the top complaints I hear from people with disabilities is that it is difficult to hook-up or get involved in a romantic relationship due to false ideas regarding our presumed lack of sexual ability or presumed inability to "feel" sex. People with all kinds of disabilities get it on in all kinds of ways all of the time. We make our kids the "old fashioned way". We reach climax. Me Before You does not help disprove these inaccuracies, and since most people don't feel comfortable discussing their bedroom behavior with the public, a person without a disability won't really understand just how wrong Me Before You is until that person gets down with the D. So rather than go and see a movie about a man who thinks he can't be “a man” because he has a disability, take out a person with a disability instead. If you do, you'll learn that Hoyer or ceiling lifts often pull double duty as sex swings.
Suggested reading: Carrie Salberg's "Dating While Disabled: A First Hand Account"
#3: Promote emotional health and wellness
Recently, a friend posted a great comic showing two buildings. One building is a place for people who need treatment for depression and suicide prevention. The other building is an assisted suicide facility, like Dignitas, where Will Traynor goes to off himself in Me Before You. The depression and suicide prevention building has stairs leading up to it. The assisted suicide facility has a ramp leading up to it. In summary: people with disabilities struggle to access services and supports, which promote emotional health and wellness, yet, many of us could "qualify" for the alternative - assisted suicide - with just the right framing of our "wheelchair bound suffering" taken from the Me Before You Screenplay of Misinformed "Autonomy". Most people with disabilities are working hard and fighting to survive on a daily basis, and yes, some do give up like the fictional Will Traynor, but we shouldn't give up on them or passively cry into our shirt sleeves at the movies.
We should all be working to make mental health services available to people with disabilities. If you know someone with a disability who struggles with depressive thoughts, or who needs to connect and communicate with someone due to social or spiritual isolation, get in touch with your area's local Independent Living Center or encourage your friend to seek out help in their community.
Suggested reading: Dear Julianna: Letters to Children from Adults with Neuromuscular Disabilities
Suggested PSA: "Live On. Disabled Lives Are Worth Living"
#4: Support true diversity in the arts and entertainment industry
There are people with disabilities who are struggling to make it in the field of arts and entertainment right now. Rather than spend $25 on two tickets to Million Dollar Baby Part 2: Revenge of Euthanasia, put that money into supporting the efforts of someone who really does have a disability, who is trying to succeed in a business that barely recognizes his or her existance. You could pay and subscribe to Mike Ervin's hilarious blog, Smart Ass Cripple, or buy Zach Anner's book, or go see Ally Bruener perform a comedy set, or watch Shannon DeVido perform on stage in NYC. All of these artists should be on the big screen, stage, or page, but are often overlooked to make room for actors who "look right" for Hollywood's idea of disability, or writers, like JoJo Moyes, who make their living writing formulaic drivel about experiences they have barely researched that get turned into screenplays. Hollywood and Moyes don't deserve another dime. They've already done enough damage with the dimes they have.
#5: Tell and listen to real disability positive stories
Last, but not least, you could watch one of my favorite documentaries, On A Roll: Family, Disability, & The American Dream, on the legend, Greg Smith, who died last week on the day of the Me Before You nationwide release. Greg fought for disability rights and for life each and every day of his life. Like many who have lived and died before, Greg believed what another hero activist I admire, Harriet McBryde Johnson, believed that storytelling is a survival tool. The great and nuanced stories told about disability are often about us and not by us. These stories breed pity, fear, and sorrow. Most of the time when able-bodied artists "crip up" they essentially metaproject their viewpoint onto the audience (this-is-how-I-would-feel-therefore-this-is-how-it-should-feel). Take the 120 minutes of wasted cinematic opportunity that is Me Before You and put 53 of those minutes into watching Greg's documentary. Put the 27 leftover minutes toward a discussion about this film. It will feel a hell of a lot better than the alternative.
#liveboldly#me before ableism#me before you#mebeforeeuthanasia#disability rights#dear julianna#thestrengthcoach
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Is a glass ceiling preventing you from reaching the top? Try getting into a glass elevator.
A Director position is about to post at the college where I work. I can't apply for this dream position despite the fact that I am qualified for it. Why can't I throw my hat into the ring? The job pays too much. In fact, most of the jobs I qualify for (and probably have a shot at getting), I can't think twice about because I'd actually be earning great money.
"WHAT?!? Isn't making a decent living wage a great thing?" you ask. Nope. Because my personal attendant care (PCA) costs approximately $27,000 per year. My PCA care (which, by the way, is at the bare bones of what I need), helps me get out of bed, get dressed, use the bathroom, prepare my meals, etc. If I make Director money, which would be $70-80,000, I will be charged more by the program that pays for most of my PCA care. Without PCA care, I won't survive, so I’d have to pay the penalty. This is not hyperbole. I repeat - Without my PCA care, I'd be in bed, covered in smelly body fluids, starving, and dead within days because I'm a human being and my body functions like human bodies do. For some reason, I feel like I am required to mention the whole human science stuff from time to time.
Currently, I pay an income-based co-payment to the state program that funds my long-term PCA care. The more money I make, the higher my co-pay. Earning more than $40-50,000 per year would increase the co-pay. The more the co-pay, the less money I bring home. After paying income taxes at a higher bracket (and this is after taking the maximum in medical deductions), and subtracting the $27,000 for PCA services, I would actually make a few thousand dollars more, instead of $20-30,000 more, as a Director than I do currently as a low-level Specialist. Yet, as a Director, I'd have added responsibilities. There is absolutely no incentive for me to want to compete in the workforce. I'll always lose. Well...I take that back - not always.
In order to pay out-of-pocket for my PCA services, my income "roll-away" number would need to be close to $300,000. This seems like a hefty salary, but as I said above, my PCA services are at present bare bones, such as allotting me 25 minutes a day to use the bathroom. My PCAs are paid dismal wages with no benefits. In order to keep great PCAs at more hours per day, who will get me up and ready to handle the pressures of a demanding, well-paid, position, I will need to up my hours and pay the folks responsible for my survival more than $10 per hour with benefits. That's the right thing to do. In order to qualify for a position that would pay $300,000 per year, I would need years of experience in a mid-management position. Which takes me back to my original conundrum. I can't work in even a mid-management position that would get me to my roll-away number, so I'm back to square one.
See, this example points out a major reason why people with disabilities are not working. According to the Bureau of Labor Statistics, in 2014, only 17.1 percent of people with disabilities were in the workforce. And this doesn't even factor in the glass elevator. I consider myself lucky to hold the job I do have because most states don’t have the crappy means-tested program I am in. Most people with significant disabilities just lose their services as soon as they make over their state’s Medicaid threshold ($1200 - 2000 per month), and many Medicaid Buy-In programs (if they are set-up and running) have income caps that stop people with disabilities from earning more than $60,000 (this is in Texas, some states are a bit better than others, but not much).
Because of income means tests placed on long-term care services, people with disabilities are discouraged from working, getting married (spouse's income counts), and living out our dreams. People with disabilities should be able to get into the workforce, get raises and promotions, and work towards their potential like all humans. Instead, we fear advancement, success, and achievement. Instead, we are punished daily by our social system because our human bodies and/or our minds work differently. It's really that simple and that terrible.
It may be hard for many to understand when I say that in my mind I don't ever consider myself disabled until I encounter barriers such as these. When I have to pee at 3 pm and my PCA isn't scheduled to show up until 10 pm, I'm reminded of my disability. When I fall in love and never hear the question, "Will you marry me?", I'm reminded of my disability. When I get a master's degree and work so, so hard to excel in my field, but can't apply for a position because it would compensate me well, I'm reminded of my disability. The reminders occur so frequently that I sometimes forget that I'm actually free or human or have dignity. Rather I'm restricted by people who are in positions of power, positions for which I could qualify and make a difference in, but can't reach due to my disability.
The next Director of Disability Services at the college where I work, or really any job that could make a difference in the lives of people with disabilities, will not be me. I guarantee the job will be done by someone without a significant disability. And maybe that person will do a good job, but I can promise you, whomever gets it won't be great, and won't understand the barriers people with disabilities face quite like someone who takes the glass elevator to nowhere every single day.
Image Description: A glass elevator on the rooftop of a building.
Special thanks to Alana Theriault for her assistance with copy-editing this piece.
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44 hours per week for life, liberty, and the pursuit of happiness
Lilianna grabbed the company laptop out of her leather briefcase and blew her nose. She was early for her first appointment and decided to review her notes before knocking on the door to the duplex that sat one hundred feet beside her. She had to pee. She always had to pee when nervous, and since this was her first day on the job as a case manager for Visions of Ability, she knew that she was probably going to spend half of it in the bathroom. She gazed longingly behind her at the package of Depends undergarments in her Honda Fit’s backseat. Those were meant for the next consumer on her list to visit today. She was tempted to grab one out of the package, but Lilianna guessed that it probably wouldn’t be too professional or comfortable to spend her morning peeing in a diaper. She would have to probably just woman-up and ask this first consumer if she could use her bathroom.
The consumer, according to the paperwork and her boss’s notes, was up for her annual reevaluation of personal care attendant services under a state-funded Medicaid waiver for working adults. Well, that’s pretty cool, Lilianna thought. This one has a job. Maybe she works at one of those workshops where people with disabilities get paid a few dollars an hour to put together binders or wrap plastic utensils? Oh wait. Lilianna scrolled down the page a bit more. This one has a, “progressive, genetic, neuromuscular disease”, “Spinal Muscular Atrophy”, with “normal intellectual functioning”. The doctor’s letter stated that the "consumer" was “non-weight bearing”, had “40% vital lung capacity” and “required full assistance for most activities of daily living (dressing, transfer, positioning, grooming, toileting, meal preparation, laundry).” Man, she thought. She can barely breathe or move. Guess she ain’t working in one of those workshops.
The alarm on Lilianna’s phone went off. In two minutes she would need to be at Constance Mumford’s front door. Right on time. This was one of Visions of Ability’s consumer satisfaction promises. Her boss had mentioned to her that consumers complained in the not so recent past about case managers showing up thirty-minutes to four hours late to meet with clients.
“I don’t really get it,” her supervisor confessed, “it’s not like these people have much going on in their lives.”
Her supervisor explained that most of the consumers on Lilianna’s caseload were elderly and some were even “vegetables". Lilianna looked down at her lap when her boss said that. This went completely against her graduate thesis on Person-First Language in Social Work. She was kind of surprised that the director of Visions of Ability could even utter the word “vegetable” in front of a new case manager.
Lilianna gathered her briefcase and made sure that the sixty-page manual and packet of forms were included. She needed to make sure that all this paperwork was signed within the hour. Lillian figured she’d spend about ten minutes making small talk, thirty minutes going through the packet, and maybe twenty minutes or so doing the assessment.
Knock. Knock. Knock.
“Hold on!” The voice behind the door was strained and had a bit of a phlegmy gurgle to it. Lilianna had an urge to clear her throat. She heard a lot of commotion.
“Do you need help? This is Lilianna Steck from Visions of Ability.”
“Hold on!” Scraping noise. “Dammit! Okay! Yeah, come on in.”
Lilianna grabbed the door handle and held her breath in anticipation. The urge to pee came back with a vengeance. The door creaked open and before her sat a person she recognized.
Her first thought was Sally. Sally was an acquaintance from high school who died a few years before. Sally was a Jerry’s Kid.
But this girl wasn't Sally. This was Constance Mumford, who sat upright in her power wheelchair wearing a pair of cut-off jean shorts that showed off her pale bony legs, and a thin baby blue t-shirt that showed off her pale bony arms. Her gorgeous mane of thick, curly, long hair and eye-makeup made her think of some kind of beautiful, doll-like, bobblehead. While her high school friend, Sally, was very conservative in appearance, Constance had a nose stud and a wheelchair heart tattoo on her lower forearm. Despite some differences in style, Constance's frame and movements were identical to Sally's. They could have been sisters.
She entered an open living area that included a small kitchenette. The living area had a big window, which faced the street. Constance's desk and laptop sat under the window and next to a huge bookshelf. Lilianna instantly recognized a few of Constance's textbooks on counseling techniques. When she looked up from the shelf, she saw two framed degrees. The master's degree was from Lilianna's alma mater.
Lilianna extended her hand forward and Constance just looked at it and smiled. Constance leaned over a bit and thrust her left hand forward using her right hand to steady it. She was poised to shake hands, but Lilianna would have to do the work to make it happen. She did. Constance's hand felt boneless and soft, but the determined look on her face conveyed nothing boneless or soft about her character.
"I'm Lilianna Steck."
"I'm Constance. Do you want to -"
Hey, I'm so sorry about this, but can I borrow your bathroom?"
"Oh, yeah, sure. You'll need to go through the bedroom. You may have to move the shower chair out of the way, but go for it."
Constance spun her wheelchair around pointing it in the direction of where to go.
Lilianna thanked Constance, put her briefcase on a futon, and headed toward the door. The first thing she noticed was that there wasn't a door on the bathroom. It had obviously been modified to fit Constance's equipment. In order to get privacy, she had to shut the main bedroom door. Constance's shower chair sat covered by a wet towel. The cupboards in the bathroom had dents and scratches all over them. Not much room for storage existed. As Lilianna peed, she noticed a packet of birth control pills on the dresser in the bedroom and a nebulizer on a shelf next to a twin-sized hospital bed. Sex and breathing. Similar priorities, she thought. Makes sense.
Pulled up to a fold out table in the kitchen area, Constance looked up and smiled as Lilianna came out of the bedroom. "Shall we do this here?"
"Let's." Lilianna grabbed her briefcase with the paperwork and her laptop and carried it over to the table with a plastic chair. She sat down. Her mind went blank for a second and then she remembered to build rapport. "Thanks again for letting me use your bathroom."
"Sure thing. Anytime. Would you like something to drink or eat? There are some peanut butter cookies over there on the counter.” Constance turned her power wheelchair in the direction of kitchen.
“Oh, no thank you. Visions won’t allow me to accept food or drink from consumers. Plus, I have a pretty severe nut allergy.”
“Oh, that sucks.”
“It’s okay. I’ve just had to learn to adapt over the years, but I’m sure you get that,” Lilianna smiled bravely like she used to for the doctors.
“Yep, we’re exactly alike. So how long do you think this is going to take?" Constance asked and looked up at the digital clock sitting on her fridge.
"About an hour. We have some paperwork to fill out; I have to review the rules on the Consumer Directed Services option; and then we do our needs assessment."
"Oh, okay, the woman on the phone said it would take twenty minutes. I'll have to text my attendant and let her know to wait."
"I'm sorry. I'll try to rush through this." She could feel Constance's frustration and Lilianna wondered who at Visions told her that it would take twenty minutes. Screw rapport building. Lilianna grabbed the paperwork and they quickly went through the preliminary stuff. A lot of pointing and signing and pointing and signing until they got to the emergency back-up form.
"Okay, so here you need to list three emergency contacts to call if your attendant doesn't show up."
Lilianna pointed to the area on the form where the consumer was to write in her contacts.
"Wait. I thought that this is consumer directed?"
"It is."
"So why do I need to tell you who my emergency contacts are?" Constance looked irritated and Lilianna honestly didn't prepare for the question. She was told that some people may not have emergency contacts and that was a good sign that they wouldn't be the right fit for the consumer directed model, where consumers hire, manage and fire their own employees, but that wasn't the question Constance was asking.
"Do you not have emergency back-up?"
"Is it your business if I don't?"
"This form is required by the Medicaid waiver program. If you do not have three back-up contacts, you may not be a good candidate for this program and -"
"I have back-up. Of course I have back-up. I'm sorry, but it seems futile to have to explain my plan for back-up if nothing is going to be done on your end if I end up in an emergency anyway since it's consumer directed. It just seems a bit silly and Big Brother like - that's all. Sorry. I'll give you the contacts."
"You can just put your parents names down or siblings,"
Constance laughed. Her voice twisted like her spine. "My mommy and daddy?"
Lilianna felt the urge to pee again. "Well, whomever."
"My parents live two-thousand miles away. I moved here for graduate school. My sister is still in high school and she's just as crippled as I am, so I doubt she'd make a good back-up."
"I'm sorry."
"For?”
Lilianna just stared at her. What was she sorry for? Maybe it was because Constance’s parents were so far away and she was obviously pretty feeble to be without support. Maybe it was because her sister also had a disability. That must have been so hard for her poor parents.
"I'm sorry that you are here without your family."
"Why?"
"Most of our consumers have support from their families."
"Like what kind of support?" Constance asked.
This back and forth was starting to make Lilianna dizzy and feel defensive.
"Well, like if there's an emergency. A family member can get them out of bed, help them eat, that kind of thing.” Lilliana felt like she gave the right answer, but Constance didn’t look pleased.
"Is that the same support you get from your family as a woman in her twenties?”
Lilianna sat dumbfounded. Why was this chick always throwing questions back at her?
"No, but I don't have a disabil--- I mean a physical challenge." She knew that Constance probably wouldn't have appreciated the political correction like her professors would have.
"So you're saying that that's my family's job - to be enslaved to do my care for the rest of their lives?" Constance's doll-eyes got big.
"I'm not saying that!" Lilianna's voice cracked.
Constance smiled. She pulled out her phone and motioned for the form.
"Look, I'm sorry. I'll list three friends. Let's just get this done."
Lilianna was sweating. This very fragile girl in front of her intimidated her. She fumbled a bit as she went through more forms. They finally got to the nitty-gritty of the paperwork after a few minutes. It took time for Constance to write the contacts on the form. It seemed to require every inch of her body to move her pen along the paper. Her breathing even changed. Constance’s handwriting was labored, messy, and Lilianna knew that this wasn’t because she was careless or unable to make words. She was just weak.
"So now I have to ask you a series of questions about your activities of daily living for this formula sheet.”
Lilianna pulled out the form and Constance’s facial expression went hard again.
"Formula sheet? There's a formula?"
"Yes, a formula. The state has strict rules pertaining to how much care someone can receive in the home."
"What about my doctor's recommendation?”
Constance pointed to her file that had copies of all the paperwork she had given to Medicaid.
"Well, most doctors want to give their patients everything and the kitchen sink." Constance blinked and immediately Lilianna could feel the claws come out.
"So you're saying that the State knows more about my care than my doctor who I've seen for years?"
Lilianna knew where this was going.
"Look, Constance. I don't make the rules, okay? I just have to get this paperwork done. There's no point in arguing."
"I need significant hours," Constance's strained voice rose and shook. “I could die without significant hours!"
"Well, if you need that many hours how can you work? How can you live in this apartment?”
"You seriously just asked me that. How dare you suggest what I think you’re trying to suggest? Do you see the degrees from Cornell and Rice on the wall behind you? Do you think I deserve to be put in a nursing home? Don’t you get it?"
"I'm sorry. It's none of my business." Lilianna wanted to cry and pee at the same time.
“Just ask me the first goddamn question."
She read the first question on the assessment form that was both in English and Spanish.
"Do you have any problems taking a bath or shower?" Lilianna asked.
"I do. I can't take a bath or shower independently."
"Do you shower everyday?"
"I do. Do you?”
Lilianna ignored her question and filled in the formula. Seven days per week, forty-five minutes per day.
"It takes me longer than forty-five minutes in the shower. It takes me at least an hour and fifteen minutes, and that's on a good day."
"I'm sorry, that's the maximum."
Constance rolled her eyes and then stopped making eye contact for the next few questions. She answered with a flat disassociated tone, and Lilianna awarded maximum minutes based on her answers.
Thirty minutes per day to get dressed.
Twenty minutes per day to eat.
There were no minutes for grooming.
"Wait. You can't give me minutes for teeth brushing, shampooing, and combing my hair?"
"As I said, I don't make the rules."
"How long does it take you to do your hair in the morning?"
Lilianna thought about the time she spent straightening her hair and putting on her makeup. She was also a religious flosser.
"It takes a while," she answered honestly, but she didn't know exactly how long because she never had to count the minutes.
"So according to the State, I am just supposed to have bad breath and uncombed dirty hair?"
"Let's move on."
Constance didn’t complain about the thirty minutes for shaving, oral care, and nail care per day, or another forty-five minutes for routine hair and skin care.
"What's the difference between routine hair care and combed hair? And what's the difference between brushing my teeth and oral care? Who the hell came up with this stupid form?"
"I really don't know."
"Well, they suck."
"Do you have problems getting to the bathroom and using the toilet?"
"What do you think?"
Constance smiled. Lilianna put in the max time of twenty minutes per day.
"Wait. Wait. Wait. Hold up. Twenty minutes! I get twenty minutes to use the bathroom?"
"Yes. That's what it says. That’s the maximum"
"Total?"
"Yes."
"How many times per day do you go to the bathroom?" Constance scoffed.
"I go around six times."
"I go three if I'm lucky, but I’d like to go six. And each time it takes me at least thirty minutes. Do you know how much it sucks to have to hold your pee for eight hours at a time? Can you imagine taking a shit on a schedule? I'm not telling you this to feel sorry for me, but this is fucking ridiculous."
"It is ridiculous. I'm sorry, Constance."
"Just call me Incontinence Constance."
They both broke into hysterical laughter.
"I have some Depends out in the car!" Lilianna blurted out as she cried and caught her breath.
“Shut up!" They both looked at each other and their smiles stopped. Lilliana wiped the tears from her face with the back of her sweater sleeve. The guilt returned like a heavy blanket being thrown at her from across the room.
By the time the needs assessment concluded, Constance had a total of 2620 minutes of care per week, which added up to approximately forty-four hours.
"So there it is. You have a budget of about six hours per day," Lilianna signed. Her bladder was screaming for relief.
“What about turning at night? Is that on the list?”
“Turning?”
“Yes, you know, moving in bed.”
“There are no hours for turning.”
“I can’t move. I’m not sure if you haven’t figured that out yet, but I can’t move at all. The doctor even wrote it right there if you don’t believe me.”
She pointed at her stack of documentation.
“Oh, I believe you.”
“So, you realize how dangerous this is to not be able to move at night? The pain, the cramping, the bed sores -“
“I get it.”
“No. You fucking don’t.”
Looking at Constance’s face, her doll-eyes widest of all with tears welling up in them, made Lilianna wish she never took this job. She wished she could quit right then and there. No one told her that this would be her fate at Visions of Ability, giving people like Constance only twenty minutes to use the bathroom per day and no help at night.
“How do you handle not turning right now?”
“Maybe I don’t handle it. Maybe I sleep in my wheelchair every night. Maybe I invite some guy over from Craigslist and do whatever it takes to get turned at night. Frankly, it’s none of your business because nothing would change if it were your business. The only way this is going to change is to end up so ill from neglect that I end up hospitalized. Don’t you see how messed up this is?” Two thick tears fell out of her doll eyes. “Don’t answer that. Where do I sign?”
Lilianna didn’t know what to say, so she just handed her the needs assessment form and Constance approved the forty-four hours per week. She really had to pee again.
“Constance. I’m so sorry, but -”
“It’s okay. It’s not your fault. I’m sorry for getting so angry. I’m just really-“
“I’m so sorry, but I have to use the bathroom again,”
Constance turned to stone.
“So do I.”
“Would you mind if I…”
“I would.”
“I can’t use your bathroom?”
“Nope. Sorry. You’re only allowed to go once every eight hours,” Constance said and wheeled over to the bedroom blocking the door with her power chair.
Lilliana gathered her papers and laptop, trying desperately to avoid eye contact with the consumer.
“Thank you for your time,” she said to Constance.
“See you next year if I’m still here,” Constance voice cracked.
When Lilianna got to back to her Honda Fit she about collapsed onto the ground. She could feel Constance’s eyes staring at her from the living room window. She opened the back door to the car and threw her briefcase onto the backseat. The Depends undergarments fell onto the ground. Lilianna left them behind and drove away.
Image Description: A picture of a form titled, “Needs Assessment Questionnaire and Task/Hour Guide” filled-in by hand with blue pen. Many of the questions from the story are listed on this form with the total minutes and hours reflecting the total minutes and hours in the story.
#disability rights#personal care#health assessment#spinal muscular atrophy#nmd united#not dead yet#needs assessment#social work#case management#disability integration act#olmstead#ADAPT
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The medical consequences of being told you're terminal when all you are is disabled
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.
Image Description: A picture of a standard exam room. The examination table is blue and stands about five feet tall with paper laid upon it. There is a small table next to it.
#dearjulianna#nmdunited#disability rights#accessible doctors#medical care#right to die#right to live#notdeadyet
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