The Hardest Thing to Carry: On Disability and Grief

 Dedicated to the disabled friends and community members who have died before me. Sharing this life with you is the greatest miracle I could dream up.

 

It’s no secret that life as a disabled adult is hard. 

 

The seemingly endless search for reliable home health aides. 

 

The eternally backlogged wheelchair repair companies.

 

The countless restaurants and stores and offices that oops, weren’t wheelchair accessible after all. 

 

It can feel like a weird carnival ride.

 

But most days, I can deal with the wacky insurance phone calls, the nebulous landscape of adult healthcare, the stunningly bad adaptive clothing selection in adult sizes…

 

No one really talks about the true hardest part—losing friends, classmates, and community members far too soon.

 

Nothing prepares me truly for the call…or the text message…or the smiling portrait photo on my Facebook newsfeed informing me that another disabled person I know is gone.

 

Then there is the noise when it hits you—that primal noise, between a scream and a wail.

 

It is one I pray you never hear rising from your throat. 

 

The most difficult aspect of having a disability is our community’s proximity to early death, sudden death, and the tsunami of grief that comes with it. 

 

Many disabilities, like certain forms of neuromuscular disease progress in a relentless trajectory that puts some of my friends at risk of death in their late 20s and 30s. 

 

While life expectancy is just a number, and many people build lives far beyond the doctors’ predictions, a terrible fact is that I have watched too many young people with disabilities die when it seemed like their lives were just beginning. 

 

Co-occurring conditions can put us at risk for respiratory failure, blood clots, and infections. 

 

Then, of course, there are those who die from systemic failures within our healthcare system, even here, in the richest country on earth.

 

While my community knows these losses too well, no one is ever prepared.

 

How can you be? 

 

A day eventually came when I realized that the number of deceased peers I know could now be counted on two hands. 

 

Then came the day that number could no longer be counted on my hands at all.

 

Laying a 20 something, a 30 something, a 40-year-old to rest may be too common in our community, but it is never natural, and it is always cruel. 

 

There’s something uniquely, breathtakingly awful about sharing in the college experience with someone, a time that represents the pinnacle of youth, and then having him or her smiling above your desk on a prayer card in what feels like the blink of an eye.

 

Or going to your beloved childhood summer camp with someone, the images of that friend as a little girl with missing teeth vividly alive in your mind, and little more than a decade later, sitting beside her coffin and asking yourself how this can be real. 

 

It’s a terrible and beautiful contradiction that the disabilities that bonded us in life, that put us on the path to even meet, are the same ones that snatched my friends from me too soon. 

 

The same disabilities that if I am honest, will snatch more friends from me one day.

 

I truly believe that my friends were, and are, completely whole in their disabled bodies. 

 

Their disabilities helped make them who they are and helped bring us together. Yet, the complications of life in their perfect, beautiful, disabled bodies took them away too. 

 

How do I make sense of that?

 

The quick answer is I don’t. 

 

It’s a brutal paradox with which I will wrestle for the rest of my life.

 

And it will never feel fair that my disability allows a “normal life expectancy” while others do not.

 

It’s so easy to forget that the oxygen machines, the tracheostomies, the cough assist devices that fit seamlessly into a raucous get-together of disabled friends are also symbols of bodily fragility, and sometimes, of impending loss. 

 

As much as I view technology like ventilators as tools, not constraints, it is undeniably jarring to see a person you eat lunch alongside, laugh with, text with, the one you saw rolling home from the college bars in your 20s, bearing a new, visible marker of a weakening body.

 

And as much as I preach sincere disability pride, as much as I truly believe prejudice to be our biggest barrier (the social model of disability), there are some things, horrible things, that the social model cannot explain or fix.

 

Burying a young person is one of them.

 

I will also say this. 

 

Well-meaning non-disabled people, when wheelchair users die, like to imagine us magically able-bodied in the afterlife, with comments like “At least they can walk now!”

 

While everyone’s feelings vary on such comments, even within the community, to me, they feel like a dismissal of these people, who most often lived a full life both because of, and in spite of, the ways disability shaped them.

 

To make a disability that molded a life disappear in death feels like a disservice to all of us.

 

To view disability through the lens of suffering, without also looking through the lens of joy, is to paint an incomplete picture.

 

Without looking through the lens of joy, how can you see it all?

 

The clever wheelchair jokes.

 

The unique magic of lazy days at summer camp for disabled kids, building a world that is just ours.

 

The courage it takes to navigate a patchwork care system. 

 

The fierce insistence that disabled people belong absolutely everywhere.

 

How can you see all?

 

You can’t—because suffering and joy often weave themselves together.

 

My beloved friends, colleagues, and community members deserve to be remembered in their entirety; disabilities included.

 

I will shout the worth of their lives until my last breath. 

 

But no matter how full and beautiful a life, death always stings.

 

No platitudes can alchemize the loss of my friends into something that doesn’t hurt.

 

Alexis, Wilfred, Niya, Dan, Philip, Amber, Christopher, Matthew, David, and so many others whose light is now scattered everywhere… I love you.

 

The hardest part of this disabled life, harder than any broken wheelchair, or rude social service worker, or prying ableist question, has been losing you.

 

But the best part of this disabled life, without question, has been knowing you. 

 

And when we meet again, I believe my wheelchair is coming with me, if only in some soul form that is probably…okay… definitely, not covered by insurance. 

 

Even with this great, gaping grief as the price, I would choose to know you in any and every lifetime.

 

There is no me without you.

 

And thank God for that.

 

 

In Memory of David Kirby: 1990-2024

My favorite way to use my writing skills is to let them be an instrument of love. So today, I write to honor the memory of my friend David Kirby. 

 

David and I met in 2011 at the University of Illinois, where we both lived in the Beckwith program for young adults with physical disabilities who have high care needs. 

 

When I arrived, I knew not a single person and it was truly terrifying. Not only was I navigating a brand-new place, but I was also relying on a team of caregivers who until that moment, were perfect strangers.

 

From the get-go, David was kind, funny, and gentle, always stopping to say hello. 

 

Whenever I said, “How are you, David?” he’d smile and say, “Ohhhhh not bad!” no matter how hectic the day was.

 

During the first week of freshman year, he volunteered to rescue me when I got hopelessly lost in a far-flung corner of campus on the way home from Insomnia Cookies. 

 

I’ve never been so happy to hear the whir of a wheelchair and see a familiar face. 

 

I’m sure it was tempting, but he never teased me about my less than stellar navigational skills nor did he mention the incident again.

 

I hope one day I will see him in Heaven and once more tell him, “Thank God you’re here.”

 

He was a shining example of living a full and fruitful life with a disability, not in spite of it. 

 

His life with Duchenne muscular dystrophy was filled with challenges, but it was also filled with humor, hope, and adventure.

 

I admire the peace David exuded in being exactly who he was, and I strive to make room for that peace in my own heart.

 

We in the disability community tend to recoil at the mention of “courage.”

 

Rightfully, we don’t want a badge of bravery for breathing.

 

But the truth is, it does take a certain kind of courage to live joyfully in a world that routinely discounts disabled people.

 

It takes courage to entrust your body and your most basic needs to others.

 

It takes courage to navigate a deeply ableist society and still say “yes, I am whole.”

 

So, if I may say it, David was as courageous as they come. 

 

On my last day of undergrad, I hugged David goodbye and through tears, said, “You’re a wonderful man, Dave Kirby.”

 

As I say goodbye today in a way I wish I didn’t have to, my parting words are just the same. 

 

You’re a wonderful man, Dave Kirby.

 

I promise to live a good life in your honor and for you, I will build a better world.

 

I miss you. 

 

I love you. 

 

Rest in peace.

 

 

Me seated in a powerchair between my friend David and his sister Megan who is also my friend. David is also seated in a wheelchair, wearing a ventilator mask under his nose. Megan is standing beside me. All are smiling in the dorm corridor. 2015.

"Who's Afraid of Little Old Me?" by Taylor Swift Resonates with Me as a Disabled Person: Here's Why

 Today I write not as The Squeaky Wheelchair, but rather as the Swiftie Wheelchair… I, like millions of others, waited with excitement and delight for the arrival of Taylor Swift’s 11^th album, The Tortured Poets Department (TTPD). And before you pipe up and say, “I don’t like her!”, I have great news to share: you don’t have to.

 

 I, for one, have loved following Taylor’s career, with all its angst, glitter, and unfettered girlhood bliss.

 

As a girl who was 15 when “Fifteen” debuted, and now a woman braving my 30s, these songs have weaved themselves through so many periods of my life, from my days scream singing Fearless at summer camp to long afternoons blasting Folklore to pass time during the 2020 quarantine. 

 

I—literally and metaphorically— 🎵made the friendship bracelets🎵 and what a wonder it has been.

 

Yes, there are more important things happening in the world, but we can still make room for joy… and for me, Taylor has been just that: a joy bringer. 

 

On TTPD, one track in particular has captivated me as a disabled woman navigating the judgment of an ableist society: “Who’s Afraid of Little Old Me?”

 

Before someone inevitably says it, hold your (white) horses, my friends… I am well aware that the world’s biggest pop star and I lead radically different lives. 

 

No, Taylor Swift was not thinking about ableism or my experiences as your friendly neighborhood wheelchair lady when she wrote this song. 

 

But isn’t that the beauty of art?

 

It holds different meanings for different people and at its best, highlights parallels between lives who at first, seemed to have nothing in common. 

 

“Who’s Afraid of Little Old Me?” though originally penned about the unrelenting gaze of the media on a public figure, resonates with me as a visibly disabled woman dodging the ever-present stares of the public. 

 

My slightly dilapidated body, seated in a large, pink, forever squeaky wheelchair, still elicits a torrent of unwelcome comments, from “What happened to you?” to “Got a license for that thing?” 

 

Sometimes, I am met with just a long gawk. In the grocery store. In the park. In the doctor’s office. At the mall. 

 

I’ve likened it to feeling like an exhibit, on display for prying eyes to consume. 

 

On the other end of the spectrum, many don’t know how to look at me at all, and so they avert their eyes.

 

I’ve long felt this reaction is worse, somehow, because it makes me entirely invisible. 

 

Swift sings, “So I leap from the gallows and I levitate down your street
Crash the party like a record scratch as I scream
Who's afraid of little old me?”

 

As a person whose entire life is examined, scrutinized, and critiqued, I imagine she feels that society has metaphorically sent her to the gallows, ready to find her guilty in the court of public opinion for being “too emotional,” “too crude,” “too prudish,” “too whiny.” A perceived transgression pops up in the newspaper each day, and it seems there is no right way for her to do anything.

 

I’d be remiss if I did not mention that Swift’s enormous wealth, power, and influence offer privileges few will ever have…yet, she is still human, and to live under the hypercritical magnifying glass of the media, to have millions of strangers offering their two cents on her every move so too requires a fortitude that few will ever have. 

 

Similarly, society demands that disabled people perform disability in a prescribed way. We must field those awkward questions with a charming smile and a sunny answer, because after all, they’re “just curious,” right? 

 

We must work full-time, or we’re declared lazy, yet many employers tacitly express, “work, just not in my office.” Simultaneously, public policy dictates that if we expect our personal care support to be funded, we must live in poverty.  

 

We’re told to be empowered. To self-advocate. To pave our own way. 

 

Yet should we share our experiences online and highlight the egregious disregard for our rights in this country, we’re told to stop being entitled, to be grateful… because at least. 

 

What the keyboard warriors don’t say out loud is that to them, we are the least. 

 

To be disabled is to zigzag through a sea of contradicting expectations. 

 

Disobey them and we too, are sent to the gallows, put on trial for failing to be disabled in a way that inspires and uplifts, but never challenges or unnerves. 

 

I believe America has not yet decided if disability is grotesque, fascinating, or some combination of both.

Much like fame and celebrity, disability inspires a kind of voyeurism, with those on the outside desperate for a peek behind the curtain. 

 

“Can you drink”? 

 

“Can you have sex”? 

 

“Would anyone ever date you?” they wonder, as if I’m not quite real to them beyond those inquiries. 

 

As if my life is theirs to consume alongside a bucket of popcorn. 

 

Perhaps in this way, Taylor and I are not so different. 

 

As the one who everyone recognized in school as “the girl in the wheelchair,” but few really cared to know, I did become an unwilling public figure of sorts, a mascot who never asked to be one.

 

I was reminded of this recently when an elderly man I’ve never spoken to before stopped me at the supermarket and asked if I still lived on the same street, remarking, “Oh, I’ve seen you around a lot.” 

 

Often, it feels like everyone knows what I am, but not who I am…and perhaps the biggest challenge of my life as a disabled adult has been this very loneliness—of being known and unknown all at once. 

 

Although I am quite accustomed to standing out in a room, my visible difference in most groups still feels like Swift’s “record scratch,” like crashing a party where I don’t quite belong.

 

The line … “Is it a wonder I broke? Let's hear one more joke.Then we could all just laugh until I cry” has stayed in my head for days: to stay afloat in a profoundly ableist society, to weather a world that still uses disability as the butt of the joke, is to bend and bend and bend so you don’t break. 

 

I, like many of my disabled peers, use humor as my shield. 

 

Because if we didn’t laugh we’d cry, right?

 

But beneath my dry wit is a tender heart, a woman who remembers hiding in the elevator in middle school because she felt so alone.

 

A woman who still gets spoken to like a child by strangers.

 

A woman whose life is consistently devalued by social service systems that quietly mutter, “benefit scrounger.”

 

A woman who bends and bends and bends so ableism doesn’t break her.

 

To withstand its crushing force, disabled people too, must develop a fortitude few will ever have.

 

But some days we break, because how could we not?

 

This verse captured my interest the most and for me, spoke to a feeling the disability community knows too well. 

 

“I was tame, I was gentle 'til the circus life made me mean
Don't you worry folks, we took out all her teeth
Who's afraid of little old me?”

 

As a disabled person, the world has branded me a circus creature, and there I sit in the ring, subject to its questions, its observations, its pity.

 

And I must field it all with grace, lest I be deemed the Bitter Cripple. 

 

The world dismisses disabled anger. 

 

After all, I am…we are… supposed to be mild. Grateful. Toothless.

 

The image of a de-toothed circus animal speaks to me because that’s what we disabled folks are expected to be.

 

Answer those questions. Bear those looks. And never, never bite back. 

 

Because they “mean well”, and you’re just sensitive. 

 

Swift continues,

 

“… So tell me everything is not about me
But what if it is?
Then say they didn't do it to hurt me
But what if they did?

… I wanna snarl and show you just how disturbed this has made me
You wouldn't last an hour in the asylum where they raised me.”

 

I found this verse compelling too, when viewed from my perspective. Countless times I have been told that ableist comments weren’t meant to hurt me, didn’t mean what they sounded like. Still burned into my brain is a grad school instructor who told me “No one will want to work with you because of your helper,” her condescending word for my aide. 

 

When I reported the incident, a superior insisted that the instructor “didn’t mean it like it sounded.”

 

A week or two later, that instructor was promoted rather than fired. 

 

To those who deny institutional ableism, who think these slights don’t cause harm, I ask, “What if they did?” “What if they do?” 

 

 

It takes unimaginable resilience to endure them, especially for disabled people who are multiply marginalized. 

 

While Swift and I have faced dramatically different types of public scrutiny, I too, could have written, “I am who I am ‘cause you trained me.”

 

An ableist society trained me to follow its rules, if not to be liked, to be kept safe in care systems eager to dispose of me.

 

If that society is not afraid of “little old me,” it is certainly afraid of what I represent. 

 

As a person who requires help with nearly everything, I represent a vulnerability that makes most non-disabled people squirm. 

 

And if there’s a thing to be afraid of, perhaps it should be the righteous anger of disabled people treated as “less than” for too long. 

 

 

 Whether she knows it or not, Taylor Swift saw me (and so many others) when she wrote this song.

 

Thank you, Taylor, for that.

 

 

 

 

 

Kathleen, a white woman seated in a wheelchair, wearing a Taylor Swift Eras Tour shirt, a Taylor Swift skirt, purple tights, and glasses.

Writer, Director, and Producer Anna Pakman Brings Disability Representation to the Buddy Comedy with “Wheelchair Money”

 To mark the 2024 Easterseals Disability Film Challenge (EDFC), I sat down with New York City writer, director, and producer Anna Pakman to hear about her latest contribution to the growing world of disability-inclusive cinema. 

 

The Film Challenge, founded by Nic Novicki, is now in its 11^th year and since its inception, has featured hundreds of submissions from nations across the globe. The EDFC’s goal is to serve as a showcase for disabled talent in film, an industry that despite strides towards greater inclusivity, has largely failed to consider disability in the overdue conversation around fostering a more diverse body of professionals both in front of and behind the camera. In fact, according to a report by the Ruderman Family Foundation, around 95% of television characters with a disability are still played by nondisabled actors. 

 

Seeking to both increase opportunities for talented disabled folks on the film scene and tell more authentic disabled stories is a quest that for Pakman, is a passion. 

 

Born with cerebral palsy, she says that she has “craved authentic stories and representation since childhood” and through her work, sets out to give voice to perspectives that were missing from the media when she was growing up. Put simply, Pakman has found that the best way to advocate for those much-needed stories onscreen is to create them herself. 

 

Her first foray into the EDFC came in 2020 with her debut short, a documentary called “My Superpower”, featuring Liz Pritchard. Since then, each of her entries in the Challenge (“Social Fitness,” “Pandora,” and “Cripfished”) has been either a winner or a finalist. 

 

Pakman hopes this year’s submission will be no different.

 

 The 2024 EDFC genre, “buddy comedy”, invites her “back to her roots”, she shares, citing past training in comedy writing at New York’s Upright Citizens Brigade. 

 

Her take on the Challenge is “Wheelchair Money,” the distinctly New York tale of dynamic duo Johnny (Jessie Chin) and Whitney (Pamela Rae Schuller), who following an unwelcome insurance denial, find themselves on an absurdity- laden odyssey to sell Johnny’s mint condition Princess Diana Beanie Baby to fund Johnny's desperately needed new wheelchair. 

 

Featuring picturesque shots of New York’s iconic landmarks, the film is both a “love letter” to the city and a demand to address its most egregious examples of systemic ableism, with the most prominent being a convoluted, notoriously inaccessible mass transit system. Deemed “the perfect cinematic villain” by Pakman, New York’s archaic mass transit system (“MTA”) represents an omnipresent headache for thousands of New Yorkers with disabilities who experience it more as a government-funded obstacle course than a ride to work. As a wheelchair user herself, she has witnessed firsthand the labyrinth of broken or entirely absent elevators, and subway cars she calls “virtually unusable.” 

 

Using humor as her medium, Pakman hopes to raise awareness about the inaccessible structures and systems that have forced disabled New Yorkers to become “the ultimate problem solvers.” She also hopes to remind audiences that the mishaps, disasters, and urban fails associated with navigating the city are the consequences of conscious “policy choices” that deprioritize the needs of disabled citizens, despite those citizens representing about 1 in 4 Americans. 

 

“Wheelchair Money,” Pakman’s largest undertaking yet, required grueling 15- hour days, an unwavering commitment to teamwork, and the grit to overcome a weather-related setback…and yet, she emphasizes that building an accommodating and inclusive set was not difficult. For example, when scouting locations, Pakman sought wheelchair accessible restrooms nearby, given that the team has three power wheelchair users, including herself. 

 

Also crucial was taking precautions to prevent the spread of COVID-19 on set. 

 

The ongoing threat of infection, which is more severe for disabled people with certain conditions, represents a safety consideration that Pakman takes seriously. Calling COVID precautions an important accommodation, she regards such measures as game-changers for those who may otherwise be unable to participate in the Challenge due to the risk of exposure. 

 

With sponsorship from Aptitude Medical, she provided PCR quality Metrix tests to all participants, a step she calls “the responsible and ethical thing to do,” despite the rollback of most industry- mandated COVID safety protocols. 

 

She implores other filmmakers to promote a COVID conscious set, especially given the increasing prevalence of Long COVID, which if contracted, could impact the livelihoods of the entire cast and crew. 

 

Using a 100% disabled “front of camera” cast, Pakman hopes to showcase her team’s talents and demonstrate that the inclusion of disabled actors is an investment with rich returns. 

 

Creating more opportunities for talented people with disabilities remains the driving force that “keeps me going” declares Pakman, amid the chaotic 5-day production schedule and the multitude of challenges that come with coordinating a cast and crew of busy working professionals. 

 

Danielle Perez, a disabled actress featured in Pakman’s 2022 entry, “Pandora,” was offered a role in the Spider-verse movie after Sony Pictures executives noticed her in the film. Pakman hopes the “unreal exposure” offered by the Film Challenge will continue to open doors for those in a frequently untapped pool of talent. 

 

The stakes are especially high this year, with the Adobe Foundation furnishing $15,000 production grants to turn winning shorts into a series or feature length film.

 

In addition to Schuller and Chin, who sparkle in their lead role debuts, “Wheelchair Money” boasts Mary von Aue as ex-girlfriend Felicia, Teresa Hui as the toy appraiser, and BJ Lange as the insurance agent, who bears the hilariously appropriate moniker, Gerald Douchet. Behind the scenes, Pakman partnered with Emmy-Award-winning Director of Photography Larry Langton to bring her vision to life. The participation of non-disabled crew members allowed her to build bridges across communities, demonstrating allyship and collaboration that Pakman treasures onset and off. 

 

When asked about the real-life happenings that serve as the catalyst for “Wheelchair Money,” she jokes that more often than most, she finds herself in zany situations in which she “can only laugh or cry.”

 

 Pakman, for one, is choosing to laugh.

 

To watch “Wheelchair Money” click here: Watch the film

 

To see all the 2024 entries, click here: 2024 Film Challenge Submissions

Image: Wheelchair Money: A film by Anna Pakman. Two actors, a black person with a red power scooter and a white person with curly hair are on the Brooklyn Bridge in a film poster