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.
Yep, I definitely hear you on this post. At least in school, I did get one bathroom break a day. Now, however, I have to wait until my boyfriend comes home and I don't always make it, especially when I'm on my period or close to being on it.ReplyDelete
As someone just starting on the journey of PA I find your "from the brain and the heart" analysis and personal impacts inspirational. No one can truely know another, but at least I have a basic idea of the things I don't know and will never experience. May I keep some of those "don't knows" in the front of my brain when dealing with the person I am going to support. Thank you for helping to education me and make me a better PA.ReplyDelete
Thanks for sharing, it was interesting to read!ReplyDelete
Amber is my sister and i just wanted to Thank you for this article...my sister would have strongly agreed with you that while pee jokes are funny, the real life issues dealing with it are not. I am so glad that she was able to help so many and that even though she is gone, she left behind a legacy that will be remembered always.ReplyDelete
That law was famous on that time. Still now. We should respect and take care of all wheelchair person. Nobody knows whoever will lost their power and fall into a wheelchair. I thing a senior can realize the difficulty of it.ReplyDelete