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.
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.
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
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.
Yesterday at the University of Illinois at Urbana-Champaign, we commemorated Disability Day of Mourning to honor people with disabilities murdered by caregivers and parents. We sent the message that disabled lives are valuable and worthy. We remembered and we challenged media coverage that justifies violence against people with disabilities. For more information on how to talk about the murder of disabled folks by parents or caregivers (filicide), see this toolkit by the Autistic Self Advocacy Network: ASAN Anti Filicide Toolkit. You can also see a copy of a report by David M. Perry and the Ruderman Family Foundation speaking out against the violence: Ruderman Family Foundation Report Below are my remarks, delivered March 1, 2018 at the University of Illinois:
My name is Kathleen Downes
and I’m an MSW student working with the Social Justice and Leadership Education
Office in University Housing. I am also a disabled woman, sitting before you to
speak words I wish weren’t necessary. But sadly, they are. Hundreds of people
with disabilities have been snatched from the world by family members and
caregivers who murdered them. We’re here tonight to remember the lost and to
tell the world we will not stand for such violence. Too often, the media frames
violence against us as justifiable, understandable, and even merciful. Doing so
devalues disabled lives and promotes the dangerous idea that we don’t matter.
I’m thinking of Tracy
Latimer, a 12-year-old girl with cerebral palsy murdered when her father filled
the car with carbon monoxide. Newspapers focused on the medical aspects of her
life and called for “compassion” towards her father, based on the ableist
assumption that her life had no quality. But where is the compassion for Tracy?
At the end of her life, she was reduced to a burden, her personhood
overshadowed by assumptions and preconceived notions. Let’s not forget that
Tracy was a human being. I wonder what her favorite food was. What songs did
she like? Did she love the smell of rain, like me? In this moment, let’s remember Tracy and instead,
have compassion for a child whose life was stolen under the false cloak of
I’m thinking of Olivia, Max,
and Ben Clarence, three children with spinal muscular atrophy murdered by their
mother. Three human beings with disabilities not so different than mine. Three
human beings with gifts to give and dreams to pursue. Dreams they will never
reach, because they, too, were stolen. If given the opportunity, they may have
gone to college and experienced the joy of zipping around a lively campus. They
may have had first dates. They may have had children of their own. They may
have had so many things, had the one trusted to care for them not chosen to rob
them of a chance. I can’t help but think that they each deserved to find a
place in the vibrant disabled community, a community that every day provides
solidarity and strength for me. A community that has taught me that I have the
right to be here, despite the inaccessible buildings, cruel cyber comments, and
discriminatory attitudes that try to argue otherwise. Most of all, I can’t help
but think that Olivia, Max, and Ben could have been my friends.
It is terrifying as a young
disabled person to consider that easily, quickly in another circumstance, I
could become a name on that list. It’s terrifying that when you’re disabled,
growing up includes learning that you are more likely than others to experience
violence simply because you exist. I was reminded just how real and dangerous
ableism is last summer when I was featured in a short video speaking about the
services that help me bathe, dress, eat, and use the bathroom. Hundreds of
people attacked my very right to “be” in the world. One commenter said, “I’d
want them to give me a lethal injection if I were ‘wheelchair bound.’” Another
said that because I require physical assistance, I have need but no
contributions. A third asked in what way I was useful, if I need physical help
to do basic stuff. It’s attitudes like these that perpetuate the cycle of
violence and cause us to be treated as disposable in a system that supposedly promises
justice for all. We can change the story, but it will take all of us to say
loudly and clearly, “No more names.”
I’ll close by speaking
directly to Tracy, to Max, Ben, Olivia, Alex, Julie, Hayden, London, Justin,
Fletcher, and the hundreds of others whose memories we hold in our hearts… I’ve
said before that I do not know each of your faces, yet I do. Because they look
just like me and just like so many of the wonderful people who make the world a
better, more beautiful place. You were worthy of life. You mattered and you
always will. I love you so.
[End of remarks]
You can also see a copy of the slideshow tribute to the victims (contains alt text for screenreaders): DDOM Slideshow
"Your heart is a muscle the size of your fist. Keep loving, keep fighting."
[Image: Kathleen seated in a wheelchair speaking into microphone
wearing a black shirt with a stylized power fist that has a wheelchair symbol rising above it, designed by Cole Anderson. Behind her is a slide that honors "Those Whose Names We Do Not Know" with an image of colored, stylized candles.]
[Image: Kathleen with Lauren Bryant, smiling, both in wheelchairs. Taylor Morefield stands on pink crutches between them, smiling. All were speakers at Disability Day of Mourning]
I originally prepared this poem for a school project called Tunnel of Oppression. That project is on hold right now, but the message is still important, especially as we face the threat of attacks on the Americans with Disabilities Act. Contact your Senator by phone, text, mail, or social media. Let them know that HR 620 makes it difficult to enforce our civil rights. They can be reached at 202-224-3121 or on the Senate website And don't let anyone say, not even for a moment, that ableism isn't real. It's a scary time to be disabled in America, but we will rise. "I adamantly protest the richest culture in the history of the world which still incarcerates millions of humans with and without disabilities in barbaric institutions, backrooms and worse, windowless cells of oppressive perceptions, for the lack of the most elementary empowerment supports.
I call for solidarity among all who love justice, all who love life, to create a revolution that will empower every single human being to govern his or her life, to govern the society and to be fully productive of life quality for self and for all."
When You Say Ableism Isn't Real
By Kathleen Downes
You think ableism isn’t real? That must be charming, to be
so privileged you can overlook it all
What if I told you it was common for people to say “I’d
rather be dead than disabled”?
That the media constantly tells us that disabled means ugly,
tragic, and helpless?
That looking for a bathroom accessible to us is a scavenger
If only a damn place to pee were as easy to find
As a thousand stale wheelchair jokes and ignorant stereotypes.
What if I told you we grow up knowing that being disabled
too often means being poor?
That having more than $2000 could mean losing the care we
need to get out of bed?
That a small change in health policy could land us in a
Could you ignore ableism then?
If only a damn job were as easy to find
As a hundred broken elevators and staring strangers.
What if I told you when you say “as long as my baby’s
healthy”, I hear “Hope it’s not like you?”
That people have asked what my purpose is, if I need help
with so many things?
That I can’t go to the doctor without wondering if I’ll be
treated like a child?
If only a damn ramp were as easy to find
As a million rude questions about my body.
I could tell you so many more things
But we would be here all night.
So, go ahead. Tell me
again that ableism isn’t real.
[Captioned video below]
[Video frame shows Kathleen, seated in a wheelchair, reading her poem aloud. She wears a blue dress shirt with white dots and glasses. Her hair is in a ponytail].