Thursday, July 9, 2020
During this Disability Pride Month, I have spent many quiet hours thinking about what disability pride means to me. I wish I had a perfectly neat, simple, eloquent answer, but I don’t… because I don’t think disability is a neat, simple experience.
I used to feel pressured to hide the painful parts of my disabled existence, for fear that the non-disabled world would only see those painful experiences and assume that being disabled was full-stop miserable. But I’ve learned to acknowledge those painful, messy parts of my living in this body, because they are real and we as a community do ourselves a great disservice when we push away our pain.
So, here goes. I am 27 years old and my body hurts every single day without exception. Cerebral palsy is literally in my bones. I imagine there’s some wacky calculation, like dog years (OK, I’m kidding!) to figure out the true age of my hips, which seem like they moved to the retirement community for chronically achy joints long ago. I carry both the physical scars of multiple surgeries and the invisible scars ground into the deepest parts of me by ableism.
I can still see seventh grade me, the little girl in the red wheelchair who hid in the elevator before school rather than get stepped around, stepped over, or awkwardly placed at the only accessible lunch table that was otherwise used for detention.
I can see the nurse’s aide, who when asked to help me to an inaccessible hospital bathroom replied that “this floor is for people who walk.”
I can see my middle school self, refusing to drink anything in the hopes that I could get home without peeing. My refusal was mostly about avoiding an abusive caregiver, but also about the fact that finding an accessible bathroom that fit a real powerchair, not an imaginary stick wheelchair, was basically impossible.
I can see that high school girl who felt invisible when she wasn’t invited to hang out with a non-disabled schoolmate after sixth grade until college.
And with me always is the reality of our collective disabled grief. Too many of my disabled friends, comrades, and community members have died, and while they leave behind incredible legacies, the brutal hurt of losing them from medical complications, from disease progression, or from the failure of care systems never ever fades.
Nor does the hurt of wrestling with the strange contradiction that sometimes the same disability that bonded us, that helped create a wildly beautiful human being also snatched that person from me too soon.
All I know is that when non-disabled society marks their deaths by imagining them springing up from their wheelchairs and walking in the afterlife, I want to scream that they were perfect as they were.
There’s the constant fear that the long-term care system will fail me, that the patchwork “system” society has cobbled together to support us will no longer be enough and I will be taken from my community to an institution where I cannot make my own choices.
There’s the guilt in knowing that the above scenario is already the truth for too many people just like me.
So, where’s the pride in this? Being disabled sounds pretty hard. Well, it is. But we don’t talk enough about joy. The joy that’s specific to being disabled, the joy I wouldn’t know had I been given another reality.
To my disability, here are some of the things I love about you.
I love the community you gave me, the way I can spot a fellow wheelchair user and connect us in seconds, usually with fewer than six degrees of separation. My mom and I have a tongue-in-cheek (but only kind of!) routine where we see another wheelie in which we say, “OK, do we know them? Camp, PT, or doctor’s office…we must!” It’s a stereotype that we all know each other, but the secret’s out, we kind of do!
I love the way you’ve taught me to embrace interdependence. You helped me realize early on that independence is the biggest lie ever told. We all need each other in some way and when the rest of the world can understand that, we will heal some of society’s most broken parts.
I love the way you’ve taught me to call bullshit when a well-meaning person declares that they “don’t see me as disabled.” Because anyone who doesn’t see me as disabled flat out doesn’t see me.
I love that you’ve given me the privilege of laughing with “crip siblings” who lovingly accept my CP squeals and occasional accidental kicks when I’m very excited…the same people who make my tighter hand fly around wildly when I have a burst of emotion.
I love the way you’ve helped me to know God. No, not in the corny “disabled children are special angels of Jesus just for existing” way. The God you’ve revealed to me is a hodge- podge God, too big to fit neatly into a strict set of religious rules. A loving God who already calls this disabled body glorified. A God who builds ramps to Heaven.
I hope that when people think of me they will call to mind my disabled joy and not just my struggles.
I accepted long ago that some people will always think less of me because I am disabled.
But I do not have to think less of myself.
I am human and I do not love myself perfectly in every moment of the day. But still, the love is there, thriving inside of me in a society determined to make me hate myself.
That is what I’m proud of today, this month, and every day I am alive That the joy of being disabled exists in me, alongside and wrapped together with the painful parts of living in a body deemed disposable.
That joy is mine and no one can have it.
Wednesday, March 18, 2020
In This Time of Quarantine, We Are Finding New Ways to End Social Isolation. When We Beat COVID-19, The Fight to End Social Isolation Must Continue
In these #Quarantimes, since the outbreak of COVID-19, I have been thinking a lot about the harms of social isolation. Since long before the outbreak, the consequences of isolation have been well-documented. Social isolation has been linked to health problems from depression to heart disease. About 20% of U.S. adults report feeling isolated on a regular basis. One of the Grand Challenges of Social Work is to eradicate social isolation.
The quarantine represents an especially intense version of isolation and we cannot downplay that fact, but some degree of separation from society is sadly, business as usual for too many people. For disabled folks and others living on the margins of society, social isolation is an ever-present reality. In other words, feeling left out and left behind, for us, is nothing new. A report by the organization Scope found 85% of disabled adults report feeling lonely.
As a person with cerebral palsy, I can certainly relate.
Rigid care schedules make spontaneous meetups nearly impossible. Public transit is still off-limits for many wheelchair users faced with access barriers as well as for those with spatial and processing impairments that make trains and buses disorienting. For people who can’t go out without assistance, opportunities to leave the home may be restricted to the few hours of care covered by Medicaid. By the time routine tasks are completed, there may be no time in the shift left to go anywhere. Too many disabled people can’t find affordable, accessible housing and are literally trapped in inaccessible homes. The income restrictions placed on disabled recipients of benefit payments and Medicaid leave little extra cash for any “fun” social outings. We are old pros at self-entertaining and our non-disabled peers ought to take note.
I am well-aware of my privilege within the disabled community. As a white, cisgender, straight woman with a stay-at-home parent who has devoted herself to making sure I’m part of the community, I am very fortunate. My father earns enough money to give us a comfortable life. I live in a safe, accessible house. I have an accessible van that I can use if someone drives it.
And still, social isolation weighs heavily on my spirit.
Beginning in junior high, as my peers became able to go out without assistance, I got left behind. I don’t believe there was any malice, but rather a sense of being inconvenienced, as other kids (and other adults, for the matter) had little interest in seeking accessible spaces to hang out or in navigating my care needs. Most of my high school and junior high friends were others with disabilities who attended different schools, and the peak of socialization for me was my coveted session at summer camp and Friday night phone calls with friends in other schools about whose bus had the most notable screw up.
I was “lucky” that very few people outwardly bullied me in those days, but there was something nearly as horrible about feeling like I wasn’t even there. Often, remote socialization tools, like the phone and the now memorialized AIM chatroom, sustained me and reminded me who I am on days when I felt invisible.
Now, at age 27, I still consider isolation to be the most difficult part of my disability. Too many people still can’t be bothered to get to know me. Grown adults, even those in social justice circles, frequently don’t seek accessible spaces or don’t invite me rather than make accommodations for my care needs.
I don’t expect everyone to create perfect disability access on the first shot, but I wish more folks would make a real effort. I can count on one hand the number of others’ homes I am able to visit because most homes are not built to be accessible and the government offers no financial support or incentives to make them so.
Paratransit is a notoriously good way to miss an event, mass transit in my area is largely inaccessible, and traveling is not logistically or financially possible at times because I must travel with a personal care assistant. I was very fortunate to live away at my university through a unique support program, but even there, the societal barriers that lend themselves to isolation were numerous.
Since I’ve moved back home, four surgeries in an 18- month period have caused me to joke to friends that I’m becoming a houseplant, climbing towards the light and occasionally sipping water. When it’s tough to get out and the world keeps moving around you, it’s amazing how quickly the texts dwindle, the calls stop, and you start to feel like a vague afterthought to some people. That said, the people who continually check in, send silly GIFs, and make a point to include me in their day mean more to me than they can possibly fathom.
As a disabled person, “virtual” connection is a lifeline. Facetime, snail mail, social media, and texting are the meat of my ability to be with others. This is especially true given that many of my friends are scattered around the state and the country, a large percentage of them also struggling to get out because of care schedules, finances, or failing health. Other than the glaringly obvious fact that everything is closed and we are all worried about the virus, my interactions with my friends are largely the same amid the pandemic.
Right now, people in mainstream society are collectively, actively looking for ways to break isolation.
Facetime, texting, Snapchat filters that make me snort, and phone calls are suddenly the stars of everyone’s show. If anything positive is coming of this, it is that society is finally embracing more than one definition of togetherness… and making joyful, wonderful, much needed outlets for people who can’t leave their homes. I’m wondering what those who called my insistence on a virtual conference option in grad school “distracting” and “a lower quality form of engagement” are thinking now.
Do they realize that their dismissal of virtual interaction was rooted in ableism, classism, and privilege?
Think of the distance forms of connection made mainstream, made precious, in a matter of days.
I have seen virtual concerts.
Classes are popping up to learn a new skill online.
Broadway shows are being streamed.
People are checking in “just because.”
Cheesy and beautiful mass sing -a-longs are happening.
We are finding new, inclusive ways to say “I love you” to our fellow human beings.
And I, a person who is regularly stuck in the house, can see quite plainly how many social and entertainment options are available to those facing isolation when each and every one of us makes a genuine effort to create them.
I have ways to hang out with people that I have begged and prayed for on my loneliest days.
Why did it take a pandemic?
The point of this discussion is not to ask for your pity or set up an Olympics of who has it the worst. Nor is it to judge anyone who has overlooked people isolated on a regular basis.
Instead, it is to beg you to keep the innovation coming. When the pandemic ends, when we come out glorious survivors who have lived and loved in new ways, don’t stop fighting to bring people together.
Make virtual hangouts a regular option. Call on corporations to improve delivery services. Keep those online concerts, classes, and Facetime visits coming. Normalize virtual connection and give those tools to those who most need them the most. Check on your people. In these challenging times, we are coming together in new, meaningful ways to make sure everyone, everywhere knows that they are not alone.
When we beat COVID-19, that doesn’t have to change.
 National Institute on Aging (2019). Social isolation, loneliness in older people pose health risks. Retrieved from https://www.nia.nih.gov/news/social-isolation-loneliness-older-people-pose-health-risks on 18 March 2020.
 DiJulio, B, Hamel, L. and Brodle M. (2018). Loneliness and social isolation in the United States, the United Kingdom, and Japan: An international survey. Retrieved from https://www.kff.org/report-section/loneliness-and-social-isolation-in-the-united-states-the-united-kingdom-and-japan-an-international-survey-introduction/ on 18 March 2020
 Bedei, C. (2019).How I deal with loneliness when my disability stops me from leaving the house. Retrieved from Refinery 29 at https://www.refinery29.com/en-gb/loneliness-chronic-illness on 18 March 2020.
Image: Snapchat photo of me with a silly stretched out face and a caption that says "Meet My Work From Home Co-Worker"
Friday, December 13, 2019
The Cripples at Christmas collection 2019! I hope you enjoy and share with your friends. An image description is below each image
Day 1: The wheelies asked NORAD to spend their resources tracking missing paratransit buses instead of Santa
A letter says “Dear Santa, We know you’re coming but we can’t say the same about paratransit. Thus, we’ve asked NORAD to track them instead. Sincerely, Every Disabled Person Ever
*NORAD= North American Aerospace Defense Command; they are the creators of a classic Santa tracker website
Day 2: Unlike the Christmas commercial in which a woman finds a new car waiting outside, the wheelie looked out the window to find a behemoth shipment of catheters
A wheelchair user stick figure looks out the window by a Christmas tree and sees a large box with a bow from Coloplast, a catheter supplier. She says “OK, well, they put a bow on it at least.”
Day 3: When he had to take Access-A-Ride to Whoville, a very late Grinch had to settle for stealing Easter…
The Grinch stands near an Access-A-Ride bus and says “This has been really anti-climactic.”
Day 4: The “Aging with CP” grab bag was full of gifts nobody asked for…
Three wheelie stick figures have speech bubbles. One says “I got arthritis in the grab bag!” The others say “I got scoliosis!” and “Hip dysplasia! I was hoping for a Starbucks card or at least a crappy box of candy!
*CP= cerebral palsy
Day 5: The chronic pain Christmas carolers serenaded the town with their hit song “Ow Christmas Tree.”
Lyrics are surrounded by music notes, “Ow Christmas tree, ow Christmas tree, how achy are your branches!” A nearby wheelie says, “This song is a real pick me up!”
Day 6: After taking a course in Disability Studies, the Misfit Toys realized they didn’t need to be rescued by Santa.
A train with square wheels says “The social model really rocked my world.” A spotted elephant remarks “Go ahead Santa! I already have plans for Christmas.” He holds a sign reading “Misfit and Proud!”
Day 7: And for another year, they argued. Were they Santa’s Elves or Santa’s People with Elfism?
An ambulatory elf wearing a hat stands in a group of similarly dressed figures, both ambulatory and wheeling. A wheeling elf sighs “Oh boy. Here we go again!”
Day 8: The durable medical equipment shop piece for the magical mantelpiece Christmas village didn’t sell as well as we’d hoped
A wheelchair user stick figure says “Come on! Nothing says Christmas like waiting for a backordered chair part.” They sit by a fireplace with stockings hung
Day 9: Eager to find a more inclusive name for the annual secret Santa exchange, the wheelies settled quickly on Gimpy Gifter
A wheelchair user stick figure in a Santa hat holds a present. Another says excitedly “It really captures our essence! I don’t know why we waited so long to change the name.”
Day 10: The gingerbread man was left with a massive leg length discrepancy after the family dog bit off part of his leg…
One gingerbread person says “Ouch dude, we were supposed to be decorative.” A gingerbread man with a shortened leg replies “Oh well, I can get a shoe lift!” A nearby chubby dog says “Yum.”
Eager to get better health insurance, the Elf on the Shelf quit his job with Santa and began a new position surveilling SSI recipients
Two wheelchair user stick figures sit by a fireplace. A nosy Elf on the Shelf says “You made 5 cents! I’m telling!”
Day 12: No one knew how to blow a New Year’s resolution quite like paratransit
A split image of 2 paratransit buses. One says “New Year’s Eve 2019” with the declaration I will be on time in the New Year. The other says “New Year’s Day 2020” with the heading Late
Friday, October 4, 2019
"You are your own best thing."
-Toni Morrison, Beloved
I am disabled and I am tired. Tired from the constant emotional, physical, and spiritual drain of ableism. I have been spending a great deal of time reflecting on the impact of ableism and what a full-time job it is to navigate a world that simply is not designed for disabled people. Ableism tries to convince people that the mere existence of our bodies is The Problem and sometimes it tries to con me in to believing that myself. But I don’t buy it.
That’s not to say I am delighted 24/7 with all of my symptoms or that I never feel frustrated that my adductor muscle is trying to kill me. I have always subscribed to a nuanced combination of the medical model and social model when it comes to disability, because some realities, like chronic pain, can’t be explained away by the environment. But ultimately, my disability is part of my life and has enriched my experiences beyond measure.
Ableism, on the other hand, is the great taker, and god, it breaks me some days.
Ableism takes away your trust that any given building will be accessible, because it allows for a world where so many aren’t.
Ableism takes away your opportunity to go to the doctor and know that you will be treated with dignity.
Ableism allows institutions designed to “help” you to control your life, to think of you like an Orwellian “unperson” and worse, to make you feel like one, when you’re having a moment. And yet, you’re in their hands, because you still need your butt wiped today. I’d say you’re at their mercy, but there is no mercy there.
Ableism takes away a clear vision of your future, because you never know if the policies that hold up your life will be rearranged at the whim of a non-disabled politician.
Ableism takes away going to an event with ease, because what if there’s a step the receptionist failed to mention? What if the elevator’s too small? What if the bathroom is the size of a closet?
Sometimes, ableism makes it feel easier to stay home. You’ll never forget the day you, as a child, gave up on field trips because the labor of making sure you could even fit through the doorway (which mostly fell on you) finally made you say “enough.”
Sometimes, ableism takes friends, who suddenly fade away, lose interest when your needs are no longer convenient for them.
Ableism takes away things before they were ever allowed to exist, like the certainty that you could go to a job interview and not be cast aside as an “undue burden.”
Like knowing that people you meet will even know how to look at you… or touch you, in a way that doesn’t involve healthcare gloves.
Ableism is greedy. Oh, it’s greedy, and there are days when it feels like it will consume you because it wants to take away so much.
Ableism’s final toxic victory is when it makes you hate yourself.
But I made myself a promise and I renew that promise today. Ableism may take what seems like everything, but it cannot have my sense of worth. No, that one thing is mine.
If nothing else, let my life be a radical promise to love myself when you, ableism, have been relentless in your efforts to make that promise unravel.
I falter, I fail, I have trying moments when my worth, that one precious thing, feels slippery in my grasp… but that, ableism, belongs to me and you cannot have it.
|Kathleen sitting in her wheelchair wearing a 3E Love shirt that says "Love" with a "wheelchair heart" as the O|
Friday, September 27, 2019
I’ve said before that cerebral palsy (CP) isn’t progressive but it kind of is. While my experience is quite different than that of a person with a strictly degenerative disability, CP has proven to be an ever-changing experience and living in a disabled body requires quick adaptation to change. That’s something I wish had been an asterisk at the end of all the cheery paragraphs announcing that CP remains static over time. The cumulative impact of 26 years of spasticity is… noticeable. My muscles are engaged in overzealous pulling on my bones 24/7 in a series of what I call neurological drunk texts. And so,bones get pulled in weird directions, joints get creaky, and you find yourself thinking that if you went on a waterslide like you did at age 9, the remains of your aching spine would be floating somewhere in Hershey Park. CP quite simply is not the same from year to year or decade to decade. My once bendy knees now frozen at a barely right angle could tell you that.
I don’t see my disability as the enemy and I know that it is deeply wrapped into who I’ve become. But living in a disabled body is exhausting. I often hesitate to admit it, for fear that a society seemingly allergic to nuance will then view my entire existence as horrible. But there, I said it. This is a tough gig. My body and I are constantly getting to know each other again. I have never seen this quite as plainly as I have this year, after having three surgeries in 11 months. Most recently, my right hip was reconstructed after trying to Houdini its way out of the socket. In order to avoid several unpleasant muscle lengthening procedures, my right femur was slightly shortened, leaving it a little more than 2 inches different in length than the left. Over the last few months, I have had to recalibrate my gait, welcome a metal plate into my bone, and begin exploring the world of shoe lifts. At present, until I finish shoe shopping, my only modified sneakers have an all-over colorful dog pattern that enthusiastically clashes with my clothes on a regular basis.
All of this is to say that healing is an eye-opening, soul-opening, non-linear process that is humbling beyond words. After placing my whole self in so many clinical hands, so many gloved strangers who poke, prod, stretch, examine, and study my very being, it has been its own spiritual project to remind myself that this body still belongs to me and me alone.
I have lain awake for many nights, angry at my body for getting so twisty, so inflamed, so reminiscent of a grand old structure with a sign that says “closed for repairs.” I have spent just as many begging for its forgiveness. Sorry for the tubes and the IV pokes, for the dripping condescension of nurses’ aides too impatient for its slow, wobbly movements. But the miracle of this very human disabled body is it never asks for forgiveness. It shows up for work every single day, cradling my spirit and humming I love you even when you don’t love me. I try to pause for at least a moment each day to let the magnitude of that devotion sink in.
And then I remind myself that I am not a fraud for saying I am proud of this body and simultaneously having flashes of resentment, grief, and impatience. Great love takes work.
And healing continues long beyond the moment an incision settles in to a bodily constellation of scars.
Adjusting to a changed disabled body is something of a rebirth.
The first time we are born, we often ask later who was in the room the moment we came to be. I find myself considering that same question as I am born again, getting to know my too-short leg. My puffy stomach with the almost -magic red hole that lets me pee on my own for the first time ever. The bulge where my infusion pump works to calm the omnipresent buzz of spasticity.
Who was in the room?
The simple, literal answer is a lot of doctors and physical therapists. A lot of healthcare gloves and chuck sheets and that young man in the rehab hospital who spent the night shift scanning bladders… like the tooth fairy, but weirder.
The bigger, metaphorical answer is one that leaves me full of awe.
My rehab hospital roommate, who did not speak my language and yet, understood me and loved me. Who, as she adjusted to her own newly disabled body, taught me Baanu so a emmia, “when two carry, it does not hurt.”
The friends who answered my late night texts as I sat pooping my brains out on a bedpan while watching Password. They assured me that this was, indeed, real life, and would one day make a good sh*t. I mean, skit.
My parents, who brought that impulse milkshake, held my hair when I barfed, and repeatedly showed me the kind of person I want to be.
All the people, who during a consuming existential breakdown about the ways our society treats disabled people like disposable goods, did not judge, chastise, minimize, or shame. They sat with my pain and they listened.
Those who answered with the right emoji when I told them I peed my sheets again.
A friend’s music that served as a kind of lullaby when I swung between crying because the world is so broken and crying because the lady who delivers the hospital brownies was just so nice.
A scrap of an Andrea Gibson poem that told me there is life after survival.
So many people and things and feelings were there, in the room.
And because of them, all of them, I am on my way.
Sunday, July 28, 2019
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
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 ultrasound, a 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 special. In 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.