Wednesday, May 15, 2024

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.



Tuesday, May 14, 2024

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
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.