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Sunday, July 28, 2019

Happy Birthday, Americans with Disabilities Act!

When the Americans with Disabilities Act (ADA) was signed on July 26, 1990, society changed for millions of disabled Americans. I wouldn’t even be born for 3 more years, but I like to think the many, many courageous activists and ordinary people who shared their stories in support of the ADA were smoothing out a path for me. It takes tremendous love to raise your voice and your fist for people yet unborn, for people you may never meet. That is what most moves me on this anniversary, that three years before my birth, Justin Dart, Ed Roberts, Judy Heumann, Bradley Lomax, and thousands of other lesser known but equally important fighters could already see me. 

And so too, they could see a world where my wheelchair and I could get into restaurants, shops, office buildings, schools, and swimming pools. Where I could realize a once radical dream of going to a “mainstream” elementary school, high school, and eventually graduate school. Where people like us were no longer hidden away. To love someone that deeply simply because they are human is an incredible act of goodness for which I can never repay these warriors. But I will always try, with my words and with my actions.

In the midst of the gratitude I feel for the tremendous progress of the last 29 years, it’s naïve to think that I am regarded today as a truly equal citizen. While my rights go as far back as the God that made me, on paper, they have been recognized for less than three decades. That should astound you, as it does me, knowing that disabled folks have been here since the dawn of time.

Yet I know that a truly equitable society requires much more than a law. Structures with ramps and wide doorways and raised toilets mean so little if they are not paired with attitudes that not only accept us, but celebrate us. And I know too well that an attitude can’t be legislated. 

I still see people like me literally applauded for existing, because expectations for us are stunningly low. I still see the surprise when disabled folks are the best at anything, from singing, to dancing, to cooking, to fill in any given activity. Because “those people” are cute and all, but they’re not really supposed to be good at anything, are they? So many people want to click, “be inspired” and move on without ever really asking about (or listening to) the actual needs of disabled people. 

The irony of this “post ADA” America is that a huge fraction of those “inspired” by disabled folks vote for policies that actively destroy our lives by defunding Medicaid, the only major payer of long-term care services that keep us out of nursing homes. They do little to disrupt the system of often unsanitary, unsafe nursing homes that snatch our freedom, because some of them think we belong there, whether they’ll say it out loud or not. And most probably do not know that I lie awake at night terrified that institutionalization will snatch me too. Because even with a loving family, the system is slanted towards putting us away. When bureaucrats quietly and without reason decide to grant disabled people insufficient home care services to survive, they often leave us no other choice but to be swallowed by the institutions that shape my deepest fears. I beg you to consider what it feels like to worry that I will be thrown away like those disposable straws we stubborn wheelfolk have insisted on keeping. (“Those people” don’t actually need to drink anything, do they?). 

I have, nearly three decades after the ADA, been told that it’s a shame that I’m disabled, because I’m very pretty. I have been told, in cheery tones, “I don’t even think of you as disabled!” as if ignoring a deep, essential part of me is a compliment. An instructor at one of the best universities in the country sneered that “people with disabilities are used to getting things on a silver platter” when I, as a lost, scared freshman asked for help finding a book.

 I have learned to reclaim the word cripple as a crisp, concise term of affection among disabled friends. It feels good to help a word used against us to evolve into one of love and power. And yet, I have also felt the sting of that word hurled as a slur out the window of a car full of fraternity brothers. That was some welcome back to campus.

By the time I was 13 years old, between the lack of accessible facilities and a psychologically abusive “caregiver,” I felt compelled to deny my body water, in the hope that I could just get home before I had to pee. In the cafeteria of my junior high, I’d sometimes wet my lips and spit the water back out. 

Do you know what that’s like to fear the very thing that makes up 60% of your being?

I still don’t see bodies that look like mine in movies and magazines. And when they do feature a person in a wheelchair, that person sits in a sporty wheelchair, has muscular arms, no sign of atrophy, no curved fingers, no sign of needing any physical help. That person does not reflect my reality. There are bigger fish to fry, yes, but frying so many fish, every single day, is exhausting as hell. Does the size of the fish really matter?

The architectural standards that are the meat of the ADA are frequently an afterthought, if they are a thought at all. I have never been able to ride the train at my local station. A nurse’s aide at a prestigious hospital told my mother, while stating that she didn’t lift, that the hospital floor was for “people who walk.” Except she didn’t say walk; she mimed walking, in a condescending manner I keep replaying in my head. Every time I see a character with a disability, I silently pray that the story won’t end in magic healing or suicide. I worry that one day when I die, someone will say “at least she’s walking in Heaven,” unaware that a Heaven in which I would not recognize myself is not a Heaven at all.

Did you know I almost wept the first time a non-disabled person asked me if I want children? It is so uncommon for anyone to see us as potential parents that I thought no one would ever ask. 

And yet, I know that all of these struggles are infinitely more complex for my multiply marginalized siblings in the movement, disabled people who are black, brown, LGBTQ, undocumented.

On this 29thbirthday of the ADA, we as disabled people must also consider the ways we have let each other down. To this day, within our own community, we build pointless hierarchies among ourselves, constantly debating who “has it hardest.” On at least a weekly basis, I hear physically disabled folks tout their lack of cognitive disability, as if our siblings with cognitive and psychiatric disabilities are somehow less worthy of respect. I still observe a disdain in our community for what I call “doubly disabled couples” as if having an able-bodied partner proves a superior kind of normalcy. Our community still centers disabled people that are white, heterosexual, cisgender, males, and as a person of privilege, I must do my best each day to make space for those our movement too often ignores. We split into harmful factions by disability type, forgetting that the enemy is ableism, not each other. We owe it to ourselves to have many difficult, necessary conversations.

On July 26, 1990, President George H.W. Bush declared, “let the shameful wall of exclusion finally come tumbling down.” The truth is, the wall is still tumbling and won’t truly fall until our laws and our attitudes are truly grounded in intersectional disability justice. 

If you’ve read this far, you perhaps think I’m “angry.” Maybe I am. Maybe we all should be. Because we are capable of so much more.

Image: Kathleen wearing a blue "disability power" shirt designed by her friend Cole Anderson. She is seated in a wheelchair with a fist extended upward in front of an "I love NY" logo.

Friday, March 15, 2019

I Can Pee Out Of My Belly (Or, My Mitrofanoff Surgery)!

Anyone who knows me can tell you that in my world, “let’s share a fun fact!” is roughly equivalent to “let’s take a field trip to hell on a paratransit bus!” Oh, wait. That’s redundant. Anyway, fun facts are usually shared in circles of sweaty, anxious people at an office retreat who are all silently wondering if there are free bagels at the end, playing with their cheery “Hello my name is stickers” and counting the minutes until they can release the farts they’ve been holding back for the duration of this forced bonding experience. 

It’s a timeless struggle that takes courage, wit and character—coming up with a tidbit about yourself that is not too dry, but not too weird. In these times of trial, you will likely identify a random woman from another department whose name you will never recall, but for reasons unknown you will always remember that her “personality animal” is a wallaby—a piece of information that does exactly nothing for your professional growth. 

Well, friends, before you die just thinking about fun fact circles, today I am sharing a fun fact about myself that I think is pretty neat: I can pee out of my belly! 

How? I recently had a bladder surgery called the Mitrofanoff procedure.  

The Mitrofanoff procedure, in a nutshell, involves the creation of a channel between the bladder and the surface of my skin. The channel is created using an unlikely hero, the appendix, which has been repurposed from uncool, rejected vestige organ to nifty pee tunnel. I am overjoyed that my appendix finally has its moment to shine. It told the others it would be famous one day! The opening on my belly is called a stoma and looks like a tiny red circle. As I have full sensation in my body, I can feel the urge to pee and can drain my urine from the channel using a small tube called a catheter. When I feel like I need to go, I insert the catheter into the stoma and my urine flows through the tube into a small plastic bag, which is torn open and emptied into the toilet. When I’m done, I throw away the catheter and the bag and go on my merry way. 

Let’s backtrack some. What prompted my appendix to have an overdue rise to glory? In short, due to my disability, I can’t transfer to the toilet independently. That means a lot of waiting around and wiggling while waiting for an assistant, a lot of pee anxiety, and about 43213421 people seeing me sans pants. While my struggle has supplied me with enough tragedies turned darkly hilarious stories for two lifetimes, it is tremendously difficult to depend on others for such an important task. If I wanted to go out alone, I had to dehydrate myself, carefully planning my (painfully minimal) fluid intake around literally everything. I knew that if I made one wrong move, I could wind up stranded amid what I like to call a peemergency. Even when I have an assistant, transferring is effortful and my trip to the bathroom can easily take double the time it would take a typically mobile person. 

Finally, my bladder is a tough customer. 

I have neurogenic bladder, meaning that my brain and bladder are basically drunk texting each other. Typically, when a person pees, the detrusor muscle contracts and the sphincter muscles relax. My detrusor and sphincter muscles are out of sync. This means that even if really need to go, the muscle will often refuse to release urine and I will be killing time on the toilet for what feels like a century. 

Between feeling tethered to other people because of pee drama and a lack of muscular cooperation, I felt like my bladder was controlling my life. The dehydration I experienced on a regular basis was endangering my health and I no longer wanted to choose between independence and having a drink with lunch. I realized how wrong it all felt last winter when drinking a full Snapple at a friend’s house seemed forbidden and foolish. Snapple fact: something had to change. 

In order to be a candidate for the Mitrofanoff surgery, one’s bladder must have certain characteristics. Specifically, it must be able to hold a certain amount of urine without leaking or refluxing into the kidneys. If one’s bladder is not able to hold a sufficient amount, it can be enlarged with an additional procedure called a bladder augmentation, which augments the bladder with tissue from the bowel. In my case, I did not need an augmentation, because as the urologist put so eloquently, “you have a really big bladder.” I’ll be adding this special trait to my resumé, as I’m sure it is prized by employers worldwide. The “biography of my bladder,” as  I like to call it, was determined using three presurgical tests: a kidney bladder ultrasounda urodynamics study, and a cystoscopy. While not pleasant, this testing is normally fairly painless. However, due to my extreme muscle tightness (thanks, cerebral palsy!), the tests were more uncomfortable for me. Both my urologist and her urodynamics tech deserve a Nobel Pee Prize for their patience during our daunting quest.

The surgery occurred on December 4th, so I am roughly 3 months healed. I spent four days in the hospital and at the beginning of the saga, there were lots of tubes up in my business, which drained my bladder and allowed it to heal. One entered my urethra, draining urine from below. The other held open the new channel, allowing it to heal sufficiently before use.

For 17 days, I had both tubes in. Having a large tube shoved all up in your business is no joke. My body treated the tube like an uninvited guest and spasmed regularly as a result. Bladder spasms feel like someone is squeezing your bladder ruthlessly and pushing out little bits of pee. There’s nothing like pausing midsentence and explaining that your bladder is currently having a complete temper tantrum. When the urethral tube was removed, I rejoiced. For the next 18 days, my urine was drained from the smaller tube holding my channel open into a bag while the channel continued to heal. Healing is hard work! On January 8th, the final tube was removed and at last, my new channel was ready to use.

I wish I could say there was triumphant music playing, my hands were ever nimble, and the first cath through my Mitrofanoff was a first prize success…. but that would be a boring story. The truth is, when I was first de-tubed, my bladder was so unaccustomed to fullness after weeks on a bag that I expertly…leaked from below and peed my pants before I could get the catheter into my stoma. I can still pee “the old-fashioned way” on a toilet (if this is possible depends on an individual’s bladder characteristics), so if I don’t cath quickly enough, I will still pee my pants, another lifelong talent. An infection meant the belly tube went in for another 7 days. On January 22, after trying 42,000 catheter types and making lots of remarks that sound like innuendos in the process (“too stiff!” “too slippery!” “too long!”) I cathed without help for the first time. In that moment, I felt like I won the lottery *envisions catheter selection show in the style of The Bachelor*.

Getting the hang of catheterizing myself and getting my bladder muscles back to work after being on “vacation” has been a long, sore, wild process. You find out who your people are when you’re peeing your sheets and receiving emails from the chuck sheet company encouraging you to take a quiz about which color diaper matches your personality (yes, really…and I know you were curious, so, purple!).

  Image of a peelightful quiz from the chuck sheet company that determines your personality diaper....yes, that's a thing. How's that for an icebreaker?

 I am forever grateful to all of those people. You are the real MVPees. It hasn’t been rainbows and butterflies (mostly just pee. Lots of pee), but all the tears, tubes, and WTF moments have been worth it! For the first time in my life, I can pee independently, a dream I never thought would come true. Going into a bathroom alone feels mighty weird and mighty amazing. Bathrooms remain labyrinths of accessibility fails from heavy doors like this one:

[Video of me trying to open a door
transcript: "Oh look, another door I can't open! I love these!"]

to tiny stalls and fruitless searches for a garbage can to dispose of my catheters. But it feels indescribably good to have more freedom (peedom?) and privacy as I navigate life on wheels. I still pee the “regular way” once a day or so for nostalgia’s sake and re-strengthening my muscles is a work in progress. So is telling my dog that it’s not cool to run away with used catheters from my trash can. 

Image of Dolly, my white floof dog, trash diving


But I am getting there, and enjoying lots of water along the way. 

P(ee)S: The use of the word “journey” evokes images of a corny Hallmark specialIn the interest of avoiding the accompanying cringe, let’s call this recovery my pee-venture.

I hope that by sharing my story I have helped fight stigma around bladder issues and been a resource to those exploring bladder management options. Have questions? Feel free to contact me on the message form. Please note that specific medical concerns should be directed to a urologist who can help you decide if a Mitrofanoff is right for you.

Saturday, February 16, 2019

Disability Is Hard: On Giving Ourselves Permission to Name Our Pain

I’m going to throw it out there—something that almost feels impermissible as it rolls off my tongue, clacks on my keyboard…

disability is hard.

There, I said it. 

That is not an invitation for others to assume that my life is worthless, to assume that “disabled” is a bad word, or to assume that I think I need to be “fixed.” I have said many times over that I am proud to be disabled and I’m not lying. My disabled identity has infused perspective in my life that shores up my being as much as my bones. The people and experiences given to me because of my disability are sacred. But in the ongoing battle to have the non-disabled world recognize our value, and to recognize that so many of our obstacles are man-made, we disabled folks often deny ourselves (and others) the right to communicate our struggles. 

Yes, even the most disability positive people are allowed to have moments and days when having a disability…well…doesn’t feel awesome. 

By the time you have reached this sentence, some of you will have branded me with one of those dreaded adjectives: ableist, self-loathing, bitter. Maybe you will even call me the reason why so many non-disabled people see us as pity objects and not as whole people. But I am a whole person and that is why I am writing my whole truth. 

I am at peace with my body. Its remarkable ability to adapt, to find its own way of doing things often leaves me in awe. I don’t want to hide my surgical scars. I am fond of the way my left hand fingers fan slightly off to the side.  My strange circuitry, the overzealous puppeteer of my muscles, is beautiful in its own way. But it is OK too, to lament that my joints ache far more than they should at age 26. 

I am allowed to wish that my hip would just cooperate, to wonder what the jaunty movements of my non-disabled peers might feel like. To believe firmly in the disability rights movement and the fight for accessibility and also, to long some mornings, for the ease of popping nonchalantly into an inconspicuous non-adapted car. And oh, would it be grand sometimes to take an easy shower that felt like a quick task and not an event. 

Of course I have moments of envy towards people who can dress and shave and wipe their butts without the gaze of 4234652 gloved attendants. I often want to scream at those people… what does real privacy feel like?

 Is it carefree as it seems to pass by a nursing home in your 20s and not feel like it’s just a lucky break that you don’t live there? 

What is it like for your bones to have a youth?

I am every bit the person I was meant to be and every bit grateful for that. But it shouldn’t feel forbidden to have “bad disability days” or to wring my hands occasionally and say, “This just sucks.” 

Because disability is good and bad, easy and hard, ugly and beautiful…so much like life itself. And we owe each other, as disabled folks, the space and grace to say so without judgment. Similarly, our non-disabled peers owe us the chance to acknowledge moments of pain without dismissing our lives as wholly terrible.

I love my disabled self. But it is not a perfect love. It’s a love that needs work. That’s big and real and brave, but also cracked and wounded. That feels shameful to say, but one day it won’t.

I am learning.

Friday, December 14, 2018

Crippled At Christmas Cartoons 2018

Happy holidays from the annual poorly drawn crew of crippled Christmas cronies! You have permission to laugh with them and at them. I won't tell. 
[An image description is below each cartoon]

To attract disabled customers, the famed leg lamp now came with an add on leg brace for $6000 extra. 
Image: A large box reads, “Fragile. ‘Now with overpriced leg brace!’” An ambulatory stick figure and a wheelchair using stick figure are nearby. The wheelie’s speech bubble says, “Fra-gee-lay. Must be that fancy Italian leg brace.” 

Another year and the Polar Express had only one accessible stop…
Image: A train marked Polar Express passes by a stick figure in a wheelchair who says “I am so not feeling the magic.”

The SSA began monitoring the mistletoe, eager to slash the benefits of any SSI beneficiaries who acted too married… 
Image: Two wheelie stick figures face one another beneath a mistletoe plant. A sign above the mistletoe says, “We see you when you’re sleeping.” One figure says “Something seems creepy about this mistletoe.” The other replies “I can practically hear my check being reduced if we kiss.”
SSA= Social Security Administration SSI= Supplemental Security Income

The “cost of living” adjustment at Social Security allowed the SSI recipients to buy exactly one more pig in a blanket for the New Year’s Party…
Image: Three stick figure wheelies wear party hats, looking on at an extra hot dog. The extra hot dog has a caption above it reading “Generously funded by the SSA.” One figure says, “Yes, singular. Now who gets it?” Another replies, “I don’t know, dude! I mean, they said mustard counts as a resource!”

The artificial tree struggled to find belonging…
Image: An artificial Christmas tree is in the corner, as “real trees” hurl insults such as “You can’t sit with us!” and “Ew. Look at that loser from Home Depot!” The artificial tree says “Come on, girls! I was born like this! Artificial tree limbs are not as different as you think!” A nearby sign reads “This celebration welcomes trees with disabilities!” 

Despite the Enabling Elves Employment Campaign (!), the wheelie elves could not work because the accessible workstation went to the South Pole on a clerical error. 
Image: Santa says, “Sorry, boys; can I offer you a gum drop (limit 1 per elf) for your trouble?” Two stick figure wheelchair users are nearby, wearing elf hats. One exclaims, “Damn it. We ordered the table 6 months ago!” Meanwhile, a banner boasts “Santa’s Workshop-Celebrating Disability Employment!”

The marketing department was confused as to why CP Barbie wasn’t a Christmas toy craze…
Image: A flyer reads, “Order today! She complains about arthritis! Realistic popping in hip and knee joints! Wheelchair footplates break from high muscle tone…just like in real life!” A wheelchair user stick figure says, “Hmmm…really thought the sparkly pink Medicaid card replica would draw the kids!”

Disabled Santa really loathed the rise of straw shaming…
Image: A stick figure in a wheelchair wearing a Santa hat sits in front of a table with cookies and a glass of milk, no straw, and a nearby Christmas tree. He exclaims, “You try drinking 52568727438 glasses of milk without a straw! I dare you!” He continues, “Damn it, Rudolph. Already told you the metal ones stab me when I startle!” Rudolph, nearby, says indignantly, “But Santa, I read it in Unsolicited Straw Advice From Non-Disabled People! It’s a bestseller!”

After Virginia established that Santa was real, she had other questions…
Image: A letter reads, “Dear Santa, Is an on-time Access A Ride real?” Santa says, “Sh*t! I hate to break a kid’s heart!”

“The stockings were hung from the chimney with care, at a height friendly to St. Nick’s brand new chair.” 
Image: Pictured is a Christmas tree and a fireplace with stockings hanging. One handle on each side of the fireplace says, “pull to adjust.” Santa, drawn as a wheelie stick figure in a Santa hat, says “It’s about time they got height adjustable fireplaces! Finally, someone realizes I’m aging!”

In light of declining mobility, the partridge in the pear tree set his sights on the accessible housing lottery…
Image: The partridge sits on a branch in his pear tree. A stick figure below says “Well, sir. Feel free to apply. The wait list for accessible units is only 67543 years long. Just make sure you meet the income limits, and be mindful that the rent will be raised should you cohabitate with the pears.” The partridge replies, “Well, f*!*” 

The wheelie was very confused when her cleverly themed cookies were not appreciated at the office cookie exchange…
Image: A group of ambulatory, non-disabled stick figures stands by. One says, “OK, the chocolate chip baclofen pump cookie was a little over the top. Another says, “I felt similarly awkward about the shortbread crutches.” The wheelchair user stick figure, dejected, says, “I made them myself! Thought they’d be a hit.”

Monday, September 17, 2018

Infographic About Plastic Straws As An Access Need

In light of the recent controversy around the environmental impact of plastic straws, I want to share this helpful screenreader accessible graphic explaining the importance of plastic straws in meeting the access needs of disabled people. Thank you HIE Help Center for making it.

Note: As a New Yorker, I can attest that I have not seen a governmentally sanctioned straw ban in NYC yet. I have reached out to HIE for clarification about the map.   
Infographic By HIE Help Center

Wednesday, August 15, 2018

The 1984 Supreme Court Ruling About Pee: Amber Tatro, PA Politics, and Access To Care When Disabled

Content note: mention of abuse, institutionalization, fluid restriction, and "caregiver" bullying

This week, the New York Times reported on the death of Amber Tatro, a woman with spina bifida who as a child, was at the center of a landmark Supreme Court case, Irving Independent School District v. Tatro,that expanded the rights of disabled students.The Court ruled in 1984 that urinary catheterization, which then 8-year-old Amber required to empty her bladder, was a “modest procedure” that could be covered under the “related services” provided by the Individuals with Disabilities Education Act (IDEA)formerly known as the Education for All Handicapped Children Act of 1973. 

The decision distinguished between medical services (provided by a doctor) and health services (provided by a school nurse or other qualified individual) and held that students with disabilities in public schools were entitled to certain health services. This decision was groundbreaking in that it allowed a great many more students to benefit from a public education. But reading this story got me thinking about a very sad truth: this child had to petition the nation’s highest court for her literal right to pee. Let that sink in for a moment. I shudder to think that if the Court had ruled differently, Tatro and many others may have been denied practical access to a public education over access to assistance with a basic body function.

While the ruling is really about a broader category of health services in the educational setting, I can’t get it out of my head that this case was about pee and the larger battle disabled folks face to have our bodies accommodated and our health maintained. So let’s talk about pee. There I said it. But not in the “ha ha! You said pee!” way… (OK. I admit it. pee jokes are funny). I mean, let’s talk about pee as a framework for a conversation about care, about access, and about what the lack of either says about the value we place on disabled bodies.

I have quadriplegic cerebral palsy and use a power wheelchair. If we’re talking pee, it means that I need assistance every single time nature calls. Someone has to shimmy my pants down, transfer me to the toilet, wipe my butt, and pull the pants back up. In that time, I have to hope whoever is helping remembers to wipe from front to back (for the love of God, not back to front, unless you’re on a mission to give me a fiery “weep on the toilet” style UTI) and often, I have to make awkward chat to pass the time. I’m used to this, and in the presence of a caring assistant, it’s not terrible to need help. But even when the most wonderful assistant/caregiver/parent on the planet is present, my relationship with fluid is strained and often disordered. 

I can’t nonchalantly excuse myself to pee whenever the urge hits. I have to make sure someone is around to help me. That the bathroom is big enough to turn. That the door will shut. That the bathroom is a single occupancy room should I have an opposite sex caregiver. Something as simple as peeing while disabled is a game. It affects how we hang out with friends. How we work. How we go to school. How we choose restaurants and bars and shops. How we choose houses and apartments, if there are any to choose from at all. How we date and have sex, or if we’re afraid to do either because inevitably, the fact of peeing will come up. And perhaps most significantly, how we budget our state-bestowed independence. 

You see, home-based services for activities of daily living such as toileting and showering are covered by Medicaid, but only as a presumably solo-peeing government bureaucrat sees fit. Medicaid provides a limited number of hours to get one’s daily tasks done, by way of a wonky formula that will never affect those who created it. In the course of the day, like all humans, we disabled Americans must put on clothes, shower, clean our houses, cook, and oh, maybe work, go to school, or have some fun. And yes, somewhere in there, we must use the bathroom. 

In a patchwork system that seemingly does not value our kidneys, disabled folks often get 3-8 hours to do it all, and that number varies highly by state and by “functional abilities.” But when one needs assistance doing many tasks, as I do, those hours go fast. And if one lacks unpaid support to cover the rest, it’s “speak now or forever hold your pee” when the assistant is ready to leave. That my friends, is fucked up. But in pursuit of our hard-won independence, our hard-won right to exist outside of a nursing home (that ruling didn't come until 1999), we make do. We get good at strange calculations, what one visionary whose name is unknown to me calls “pee math”.  

We get good at making our needs small, hardly noticeable even. We say “no thank you” to water and hope no one notices we’ve said “no thank you” all day. We leave social outings before our bladders fill. And even if we can pee on our own, a labyrinth of inaccessible bathrooms makes it more practical to drink as little as possible. When those of us who need hours of assistance have them, finding someone to work them is hit or miss. Getting a reliable personal assistant (PA) is like winning a weird game show, or having a lucky day on a peculiar app, where one can “wipe right” if this PA seems like a keeper. For too many of us, a not-so-great PA is our first brush with abuse, even if we once didn’t recognize it as such. For me, a high school based string of unreliable and unkind “health aides” and ultimately, a psychologically abusive “caregiver” at school were my introduction. Being entitled to “related services” like those Amber won is one thing. Getting good ones is another.  

In seventh grade, I began to measure in my head how I could drink as little as possible and get through the school day. I knew there were 8.75 fluid ounces in the juice boxes I brought to school. Even if I wanted them, I sometimes threw the juice boxes out. Other times, I just wet my lips. By ninth grade, the less thirsty I felt, the prouder I was. It was a perverse victory if I didn’t feel thirsty at all. Doing this to myself felt easier than dealing with people who didn’t think I deserved to pee. On bad days, I didn’t think I deserved to pee either. It’s unbelievable how quickly abusers get into your head. By tenth grade, a change (and a major improvement) in my school caregiving situation broke the cycle of dehydration. Slowly, I got to know water again, the substance that makes up about 60% of my being, and yet, had come to frighten me. I have a healthier relationship with fluid today and my high school days are far behind me. Still, I wouldn’t call my fluid-intake healthy. I will never completely be free of the pain that psychological abuse planted in me and by virtue of being disabled, I will always have to chase away the fear that I am a burden. 

Post-secondary schools bear no responsibility to provide an assistant; thus, past a certain age, peeing or any number of mundane care tasks can dictate not only how, but if we continue our education. In school or anywhere, disabled people have to worry about how many hours Medicaid has declared necessary to live our lives, regardless of if that number is enough for us to be as independent as possible. And so, I return to Amber, and I pump a fist in the air for what she accomplished. But I also remind anyone who reads this that the “right to pee” or to do anything in a disabled body is hardly guaranteed. Think about that next time you flush.

Sunday, April 1, 2018

Farewell, Stephen Hawking. Take Your Chair With You!

The death of Stephen Hawking is a great loss for the scientific community, the disability community, and the whole world…or the whole universe, if we are thinking like Professor Hawking. As is usual when a disabled person dies, there has been a lot of chatter about how Hawking is now “free” from his body, his wheelchair, and his communication device. The trite, stereotyped cartoons circulating show him striding away from the power chair into the waiting stars, and it is implied that a mind “trapped” in a limited body has been released to achieve true greatness. But what if I told you when I picture Hawking floating freely through the cosmos, I picture him zooming by in his chair, in a place where it truly doesn’t matter what you use to get around, because everything is 100% accessible?

As someone who has grown up using a power wheelchair, the cartoons depicting Hawking sauntering into the cosmos in a suddenly ambulatory body make me uncomfortable in ways that are difficult to articulate. But after reflecting over the past day, I can say that some of my discomfort can be summarized like this: Why does society assume that true peace and freedom can’t exist in a body like mine? Of course, if there is an afterlife, which I believe there is, we may well have no bodies at all. However, whenever the great beyond is depicted, disabled bodies are erased. Essentially, I am erased, because existing like me has been deemed incompatible with the joy of a Heavenly reward. Ouch.

Stephen Hawking was one of the greatest thinkers the world has ever known. His talent is ordinarily contrasted with his disabled body. The world saw his thoughts as brilliant, his body as broken. But the disabled body (and the disabled mind, for the matter), is not without its own magic. Those of us with disabled bodyminds live in bodies and minds that must adapt and innovate and grow every day around both medical realities and deep social prejudices that we ourselves must unlearn. The very act of taking up space on the planet without apology is one of resistance. That, to me, is pretty damn brilliant. Thus, Hawking’s talent and his disabled body need not be seen as a contradiction. Hawking made his mark not in spite of a disabled body, but in harmony with it, and when we erase that, we feed into the lie that disability and greatness cannot coexist. That lie has tragic consequences that seep into every aspect of society.

That said, “greatness” need not look like a scientific genius. Our world, especially in these challenging times, demands that we recognize greatness in all of its forms and acknowledge that greatness manifests itself as much in a man who uncovers the secrets of the galaxy as it does in the person who shares a kind word with a stranger. When I contributed to a video this summer explaining the importance of Medicaid in my life as a woman with cerebral palsy, an Internet troll challenged my very right to exist because I need help. She asked “in what way I was useful” since I need physical help “just to do basic stuff.” When another person called out her ableism, the troll replied that “unless you’re Stephen Hawking,” she just wasn’t seeing my usefulness.  While Stephen Hawking is one of the standard answers nearly anyone can give when asked to name a disabled person, remember that for every Hawking there are millions of other disabled folks who may never become world renowned professors or famous writers or movie stars…and they shouldn’t have to in order to be treated as people of value.

That troll revealed an ugly sentiment that bubbles beneath the polite veneer of society: too many nondisabled people still believe that disabled folks need to earn the right to exist. The truth is, whether one has unlocked the galaxies or merely spent the day eating a bag of chips, disabled folks deserve life and a world that makes room for us simply because we are human beings.

Don’t celebrate Hawking as an example of what humankind can do when we “overcome disability.” Celebrate him as a testament to what we can do when each and every bodymind in the universe is accommodated and supported. Stephen Hawking did not find true greatness when he “broke free” of his disabled body. He was true greatness in a disabled body. That shouldn’t be so hard for the universe to believe.