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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.