Friday, December 31, 2021

New Year's Eve Makes Me Sad (But I Like the Snacks)

 

For Joyce Lydon, forever loved and missed.

I’ve always found New Year’s Eve to be very sad. It breaks my heart and feels so strange to think about starting an entirely new year without the people we’ve lost; kind of like we’re continuing some weird journey while a bunch of people we love are waving as we look out the rear window, as if to say “I gotta stay here.” I imagine them getting smaller and smaller as I move forward, like when I would leave my grandparents house as a child. My grandparents would line up on the driveway, waving, waving as the car pulled away until they were just dots on the horizon. 

 

There’s a cruelty to it, writing a year on a page that people you love won’t, adding to that unwanted collection of years in which they are nowhere in the world. Nowhere and everywhere and nowhere all at once. 

 

The thought of more time and space coming between us, so formally marked by a turned page, has always stirred a certain melancholy in me and a wish that I had studied the fine details of their faces for longer, taken more pictures, been able to do that lunch date we hoped for “when things get better.” We all, I suspect, have some unfinished plans with the people we’ve lost, and no platitudes like “they lived a good long life” can truly soften the blow. Of course, there is also the brutal truth that so many lives should have been much longer. 

 

I don’t think I will ever fully escape the New Year’s Eve feeling that I am leaving someone behind when the hands of time cross over the bridge of midnight. The folks waving as the car pulls away will never be “here” again in the way that I want or wish. 

 

Yet I know we never truly leave or lose people we love. The way we hold onto them now is different. I won’t try to tell you it’s just as good. But the fact is that we hold them still, and no clock inching forward or popped champagne bottles or midnight kisses can change that.

 

To all my beloveds who have “hopped out of the car” this year and each year before that, I will always grieve for you. Part of me will always look for you in the grocery store, hope it’s you when the phone rings, yearn for the feeling of your hands. But since you can’t walk with me into this new year, I will carry you. 

 

And everywhere I go, I will share the joy that was you. 


Is you. 

 

Always will be you.

 

 And I will shout into the wind that you were real. 

 

You were real and you loved me. 

 

When I watch the night become the dawn, the first dawn of this new beginning, you will be nowhere and you will be everywhere. But mostly, you will be everywhere. I will make sure of it.



Me and my late friend Joyce smiling at a camp dance. I have a red t shirt and she has a green jersey and cowgirl style hat
                                            ID: Me and my late friend Joyce smiling at a camp dance. I have a red t shirt                and she has a green jersey and cowgirl style hat


Monday, December 13, 2021

Cripples at Christmas 2021: Annual Cartoon Series

 Merry Christmas, Happy Hanukkah, Happy Festivus! I hope you enjoy this year's round of cartoons! Image description under each drawing. 


When Santa’s team diversified and hired Gimpy, Gimpy’s neurogenic bladder caused some serious Christmas Eve delays…

     When Santa’s team diversified and hired Gimpy, Gimpy’s neurogenic bladder caused some serious Christmas Eve delays…

 

Image: Three reindeer lined up beside each other with one saying, “Dude’s been trying to pee for 45 minutes. We’re supposed to be in China now!” A speech bubble from a voice out of view says, “Can someone turn on the water?”

 


The adapted matching family pajamas were a lot less adorable when the price became clear…

    The adapted matching family pajamas were a lot less adorable when the price became clear…

 

Image: Three sets of pjs with a Christmas tree top and striped pants and the heading,“‘Regular’ Matching Christmas PJs: $50” beside three sets of pjs with a reindeer face top and plain pants. The second heading says, “Adapted matching Christmas PJs: $150”

 


Two standing stick figures and a wheelie stick figure near a large door and a sign reading, “Caution: door is heavy.” The wheelchair user states, “Santa’s Workshop? More like Santa’s Jerkshop! So much for the inclusion campaign!”

     Another Year and Santa’s Workshop Had No Automatic Doors

 

Image: Two standing stick figures and a wheelie stick figure near a large door and a sign reading, “Caution: door is heavy.” The wheelchair user states, “Santa’s Workshop? More like Santa’s Jerkshop! So much for the inclusion campaign!”

 

A calendar with 24 spaces is filled in with various doctor specialties including gynecologist, urologist, gastroenterologist, spine specialist, orthopedic, podiatrist, orthotist, dentist, opthamologist, neurologist, and psychologist. Also mentioned are blood tests, internist (flummoxed by your many issues), a urodynamics test, “urologist again,” “Botox for spazzy arm” “gastro again,” and “wheelchair clinic after 6 month wait.” A wheelchair user asks, “Where’s the candy  The “Doctor A Day” Advent Calendar Was Markedly Less Charming Than the “Chocolate A Day” Version

 

Image: A calendar with 24 spaces is filled in with various doctor specialties including gynecologist, urologist, gastroenterologist, spine specialist, orthopedic, podiatrist, orthotist, dentist, opthamologist, neurologist, and psychologist. Also mentioned are blood tests, internist (flummoxed by your many issues), a urodynamics test, “urologist again,” “Botox for spazzy arm” “gastro again,” and “wheelchair clinic after 6 month wait.” A wheelchair user asks, “Where’s the candy?”

 

Image: A stick figure in a wheelchair wearing an elf hat sits by a Boggle game represented by letters with motion lines. The person states, “This assignment really isn’t working out.”

 The elf with the CP Startle Reflex Went For A Vocational Rehab Consult After Years of Assembling Boggle Games Had Frayed His Nerves

 

Image: A stick figure in a wheelchair wearing an elf hat sits by a Boggle game represented by letters with motion lines. The person states, “This assignment really isn’t working out.”

 

Two ambulatory figures in elf outfits sit on a mantle beside an elf in a wheelchair. Various speech bubbles are shown drifting from “The Land of Unsolicited Opinions” such as “Cinnamon yoga!” “Cinnamon works wonders! And it’s natural!” “I sell cinnamon smoothies!” and “My cousin is a cinnamon spiritual healer!” The wheelchair user muses aloud: “Does Stacey seriously think my devastating, lifelong joint pain can be solved with cinnamon?”  *In Elf on the Shelf lore, cinnamon is considered like vitamins for elves

Image: Two ambulatory figures in elf outfits sit on a mantle beside an elf in a wheelchair. Various speech bubbles are shown drifting from “The Land of Unsolicited Opinions” such as “Cinnamon yoga!” “Cinnamon works wonders! And it’s natural!” “I sell cinnamon smoothies!” and “My cousin is a cinnamon spiritual healer!” The wheelchair user muses aloud: “Does Stacey seriously think my devastating, lifelong joint pain can be solved with cinnamon?” 

*In Elf on the Shelf lore, cinnamon is considered like vitamins for elves


An Operation board game box with the text “Now featuring: Fucked Up Spine, Weirdly Deformed Hip, Arthritic Knee, Dislocated Shoulder, Spastic Foot, and Neurogenic Bladder”

   “Operation” Came Out With A New Edition To Be More Relatable For Disabled Folks This Christmas

 

Image: An Operation board game box with the text “Now featuring: Fucked Up Spine, Weirdly Deformed Hip, Arthritic Knee, Dislocated Shoulder, Spastic Foot, and Neurogenic Bladder”


Image: A reindeer with a tube in its belly next to a can of formula that reads: “Kate Farms ‘Magic Reindeer’ Made with Real Glitter 100% Oatmeal
    For the Local Reindeer With a G-Tube, The Formula Version of Magic Reindeer Food Was A Welcome Surprise

 

Image: A reindeer with a tube in its belly next to a can of formula that reads: “Kate Farms ‘Magic Reindeer’ Made with Real Glitter 100% Oatmeal


Image: A sign that says “Introducing…the RoHoHoHo! ‘Superior Pressure Relief From the Folks Who Brought You Christmas!”


  Eager to Get In On the Pressure Sore Prevention Market, Santa’s Workshop Put A Festive Spin On Wheelchair Cushions

 

Image: A sign that says “Introducing…the RoHoHoHo‘Superior Pressure Relief From the Folks Who Brought You Christmas!”


Image: A drawing of Santa saying “Tell the accessible media department we had lots of assholes this year.”

     A request for a large print naughty list had Santa’s paper budget stretched thin…

 

Image: A drawing of Santa saying “Tell the accessible media department we had lots of assholes this year.”

 

A paratransit bus with the sign: “ETA: No fucking clue”

“The Night Before the Night Before The Night Before Christmas” Told the Tale of Disabled People Boarding Paratransit A Few Days Early, Hoping to Make Christmas Dinner on Time

 

Image: A paratransit bus with the sign: “ETA: No fucking clue”

 

Image: A line of wheelchair users in Santa hats under a lit marquee advertising a sold out concert.

A Disabled Christmas Choir Performed Their Smash Hit, “O, Rolly Night”

 

Image: A line of wheelchair users in Santa hats under a lit marquee advertising a sold out concert.


Saturday, September 11, 2021

My Letter to Disabled Folks for Suicide Prevention Month


 Content Warning: Mention of suicide, ableism, mental health conditions


September is Suicide Prevention Month. Mental health is of particular concern for disabled people, who face additional obstacles like systemic ableism, increased risk of poverty and isolation, and higher rates of chronic pain. Because of these factors, people with disabilities also struggle to access mental health services as easily as their peers without disabilities. Even with a bright, vibrant disabled community, even on the days I feel proudest to live in my disabled body, navigating the world with a disability is hard. I’ve learned over many years of advocacy that disability pride is not a perfect science. You can sincerely find joy in this life, you can refuse to have your disabled being marked inferior by the world, and still, some days will feel impossible.

 

In 2018, as part of a project inspired by the LiveOn Movement, I wrote a letter to my fellow disabled folks struggling with their mental health. Today, in 2021, I’m sitting down to write to them again because I have learned so much in the three years that have passed. I hope you will read along and remember how much the world needs you, exactly as you are.

 

Dear Disabled Friend Who Feels Depressed, Anxious, and Hopeless:

 

I have been in the place where you are. It’s a scary feeling to be there and you probably feel so alone. It’s not easy to be disabled, especially in a world that constantly tells us we don’t fit anywhere. Non-disabled people easily underestimate the toll of discrimination, of fighting for basic needs, of searching for a competent personal care worker so you can do something as simple as change your clothes. 

 

Some days, it all feels like it will crush you. Disability pride, on those days, feels like a faraway concept. Like maybe it can only belong to the lucky ones. When I developed a new spinal condition in the fall of 2018 that left me with debilitating nerve pain, it was a major gut check: could I be proud in this body, the one I thought I knew, that now felt like it was burning me from the inside out? How many more gloved hands and clinical gazes could I bear on my skin, especially when most of those doctors implied that the chronic pain ruling my life wasn’t real? 

 

Sure, I’d spent my whole adult life rallying for pride and acceptance, but on those mornings that I welled up with tears from nerve pain caused by my once innocuous pajama pants, I felt like a fraud.

 

It grew harder and harder not to compare my life to what I saw on Instagram, where former classmates posted photos of marriages and babies, while I tested the fabric on washcloths to see which kind wouldn’t feel like I’d poured acid on my skin. 

 

Amid all this, when it felt like the whole world should be frozen and weeping with me, the pull of regular life still yanked at me. Phone calls, training home care aides about how to shower me, paperwork, paperwork, what to eat for breakfast. One of the hardest parts of being disabled, chronically ill, or some combination thereof is the loneliness. 

 

Oh, the loneliness. 

 

The feeling that you are a pit stop that other people will make only when they have some time out from their real social lives. 

 

Several surgeries and many months of reflection later, I know that anxiety and depression are liars and thieves. I still struggle with loneliness from time to time and I know the stress of ableism will never fully dissipate. But I am here. That in itself is an accomplishment, although a society obsessed with productivity will try to tell you otherwise. 

 

If you are reading this, you are still here too, and my god, I feel honored to be with you. I don’t care if all of your quarantine plants died, if you didn’t learn a new language this year, or if your sourdough bread attempt was a dumpster fire. The grades you earned in school, the job you have or don’t have… all of those things are so small. One of the greatest lessons I’ve learned in the time since my last letter is this: if we stopped celebrating people for what they do, and instead celebrated who they are, the whole world would feel so much healing.

 

My dear disabled friend, I’ve loved you from the beginning. Even if we never meet, my love for you remains. 

 

Because despite our varied lives, you share with me a sense of knowing. Knowing what it feels like to be the one who stands out in every room. Knowing the stares. The questions. The bureaucratic chokehold of systems that are supposed to help us but hold us back instead. 

 

With that shared knowing is a sacred kinship between you and me.

 

If you don’t feel proud in every moment, you are not a fraud. You are a human being who understands that joy and grief live together. 

 

You are a person who matters… and I’m proud of you…even in the moments you don’t feel proud of yourself. 

 

Stay.

 

Love, 

 

Kathleen

 

 

 

 

 

Monday, August 16, 2021

To the Disabled Students Heading Back to School, I See You

 Today I came across my 7th grade ID photo, in which I am a tiny 12-year-old girl in an aqua tank top, smiling and trying to convince myself that junior high seems like a good idea. The anxiety I felt when the picture was taken is still so real to me that it’s hard to believe 16 years have gone by. I occasionally ask myself why I saved the long-expired ID card, and I still can’t settle upon an answer, considering that it is a relic of one of the hardest, most awkward times of my life. The best answer I can come up with is that perhaps I need to see how far I’ve come. To have evidence that I really did make it.

 

As the back-to-school Walmart commercials flash across the television and first day of school photos are posted, it’s so easy to be transported back to what those first days felt like. As a disabled student in a school system still trying to catch up decades after IDEA, the first day of school was often akin to being dropped in the jungle. Among the color-coded binders and sticky, creaky lockers hung heavier questions: 

 

Will the accessible desks be in place? 

 

Will the elevator work? 

 

Will my wheelchair fit under any of the lunch tables? 

 

Will the person who helps me use the bathroom treat me like a human being?

 

Inevitably, the answer to one of these questions, or many of them, was a resounding “no.” 

 

Navigating an educational system that frequently leaves disabled kids behind made me the advocate I am today, and I will always be proud of that. 

 

But a piece of my heart will always be broken knowing that disabled kids should not be burdened with fighting tooth and nail for basic accommodations. 

 

The little girl in the ID picture couldn’t have a carefree first day of junior high because she was busy fighting dozens of little battles: ill-fitting desks, heavy doors, inaccessible lab tables, the epic search for a competent note taker. I know my story is not unique and for millions of disabled students, the same anxieties that haunted me in my school days persist. 

 

When I watch those Walmart commercials, I want to shout at the TV that for students with bodyminds outside the mold, the first day is never as simple as jauntily walking through the schoolhouse doors with a cute backpack.

 

 But oh, I dream of that day…when all that disabled students must worry about on day one is if their new sneakers fit. 

 

Until that day comes, my heart remains with the disabled kids breaking back-to-school barriers that simply should not exist. I salute the courage and grit it takes to wade through the system, to keep showing up in places and spaces that too often suggest that you don’t belong. I’m here to tell you that you do belong, in all your perfect wonder, and you always have. Anyone who believes otherwise has so much left to learn.

 

To those disabled students, wherever you are, the first thing I think of at “back to school” time is you. I know the feeling of waiting for a perpetually late short bus with an ancient wheelchair lift. The feeling of hoping for classrooms that you can freely navigate. Of crossing your fingers that someone, anyone read your IEP. As someone who needed personal care assistance in school, I know the bravery it takes to trust new people with your body. And I pray with everything in me that the people chosen to care for you will be kind.

 

I was once where you are, my head spinning with the same galaxy of worries. You are not alone, although it may feel that way right now. On your first day of school and on every day forward, you make me proud. Get out there and show the world how worthy, beautiful, and fulfilling disabled lives can be.

 

And to the non-disabled educators, classmates, and parents reading this, ask yourself what you can do to dismantle ableism in school. Ableism harms everyone and it ends when we all commit to fighting it. 

 

The fight will have been worthwhile if one day, not long from now, the next little girl in a wheelchair finds herself rolling on a much smoother path.

 


Old ID photo of me at age 12. I am a white young woman in a wheelchair with a blondish ponytail, glasses, and an aqua tank top.

Image: Old ID photo of me at age 12. I am a white young woman in a wheelchair with a blondish ponytail, glasses, and an aqua tank top.