Forgotten

Dear Debriefers, 

It’s 6 months since I was admitted as a part-time wheelchair user to my local university hospital in Madison, Wisconsin. And it’s 5 months since I was discharged from a rehabilitation facility, unable to stand or walk, as a new full-time wheelchair user.

I dragged myself up the twenty stairs of my inaccessible home. Since then, I have been stuck, unable to independently go outside, get groceries, packages, or any of the mail left in my mailbox at the bottom of the stairs. As well as my physical disabilities, I live far below the federal poverty line, unable to afford wheelchair accessible housing.

Most of the time I am alone. Social media provides me with the majority of my connection to other people. However, the stories of disability I see there make me feel the weight of my segregation and an expectation that I be a different kind of disabled in order to deserve friendship and care.

Poverty, searing pain and severe chronic illness restrict my access to relationships. I have never in my life felt so disconnected from community or fought so hard for it.

Original writing like this is made possible by support from readers.

Living in my community

The only way I know the seasons have changed is the feeling of my apartment walls getting slowly colder. I press my hand to the plaster and a chill travels from the palm of my hand down my spine. I haven’t seen a leaf, a bush, a blade of grass, or a body of water for more than a few brief minutes since I entered the hospital July 30^th last year.

My second-story apartment, above an over 100-year-old ex-funeral home, is both my haven and my prison. When I moved in four years ago, I was able to walk up and down the stairs. I didn’t know that rent in my city would soon increase at the fastest rates in the country. I didn’t know that I’d be unable to afford to move somewhere else when my mobility and my ability to access sustainable employment decreased as well. 

My only way to access the outside world is a door at the bottom of a stairwell that leads to the street. I cannot get there unless a friend hoists my forty-pound wheelchair down and then back up the stairs, while I drag myself down and back up using my arms. It is exhausting and physically degrading. I only leave when I need to go to doctor’s appointments. 

However, the energy required to coordinate these brief trips out of my apartment and basic care needs leaves me unable to ask friends how they are doing, to share moments of joy or gossip, to be a good friend. I am too exhausted to reach out except for help with things I need: groceries, prescriptions, packages, trash disposal, replacement keys.

Yet, according to the government, I am “living in my community”. I am not institutionalized in a nursing home or other long-term care facility.

“You need to move.”

Besides my friends that come to my apartment to help with appointments and groceries, the other half of my small world are caseworkers. They come into my apartment every month or so with clipboards and paperwork for me to sign, to assess my eligibility for long-term care services. They leave with the promise of government-funded care dangling in front of me, still unprovided.

One of them shares her concern. “Your living situation is not safe. You need to move.” She tells me about other disabled people she knows living in more accessible housing. But I am not like the “other” disabled people. The rent of those accessible places is far beyond what I can afford. I am poor and estranged from family. 

The case worker overlooks the nexus of ableism and capitalism that insists, in order to deserve care, I either belong to somebody or I buy my way into community.

Living in my bed

My days are spent lying in bed, staring at the wooden bird mobile on the ceiling, pain searing through my legs. Spasms and fatigue make it hard for me to type, text into my phone, or talk to friends.

This isn’t just the occasional flare that knocks me out of a trip to the grocery store, or ability to speak every so often. It is every second of every day, a staggering amount of invisible suffering that makes me feel more in touch with the dead than the living.

I feel most alone at night, the wind whispering against my window. The only things to keep me company, beside my pain, are my stuffed animals on my bed and cocoon of heavy blankets. It feels like I’ve entered the underworld. 

Searching for solidarity

For solidarity, I search for disability stories. But I feel lonelier than ever when I find them. 

A varsity football player paralyzed in an accident comes home from the hospital to a celebration with friends and family and a fully remodeled home. A student with cancer has classmates who organize a 5k fundraiser while she goes through chemotherapy. A chronically ill wheelchair user travels the world.

The algorithm on Instagram knows that I’m sick and can’t walk. It shows me videos of newly disabled people coming back to live in their newly accessible homes. Grab bars. Wood floors. Ramps. Beautiful, long ramps that stretch over the offending staircases. In one video, a girl shows viewers how she has two wheelchairs, one she leaves at the bottom of the stairs, and another she leaves at the top. She can get to the wheelchair on the top of the stairs by taking an expensive stair lift fixed to her wall.

These social media stories make it appear that disabled people who can access community are the majority. Maybe they are. I don’t really know. At the very least, they have a lot of followers on Instagram, where they post positive, uplifting disability content. Ableism alleges that disabled people are burdens and cannot contribute anything meaningful to society, so the argument, I suppose, is that showing what disabled people can do is necessary to counter dehumanization.

Yet, I can hardly say life looks even remotely similar for me or many others who live segregated from the physical world, either trapped in our homes or disappeared into nursing homes or institutions. And we too are human.

Disorientation of loss

To be clear, I was never like the varsity football player or cancer survivor whose paralysis and diagnosis came as surprises after many years living without a disability. As a teenager and adult, I never had access to sports teams, full-time employment, late-night events, loving family, or the vast access to relationships that comes merely from being well enough to exist in physical proximity to other people.

I have always been unwell, broken, sick, crippled, living with a progressive disability which familiarized me with the constant, bottomless disorientation of loss.

At fourteen, I lost touch with my closest friends when my parents, unable to contend with the magnitude of care I required, sent me away to a residential institution. At eighteen, I ran away from my abusive childhood home and lost my family. At nineteen, I lost all remaining flickers of health and was diagnosed with several chronic illnesses that gnaw away my muscle strength, mental stamina and energy. 

At twenty-one, fatigue made me lose my ability to show up regularly in person to work. And, now, at twenty-five, I lost my ability to walk, to climb the stairs, and save a few trips between my home and the hospital, all physical access to the community.

My experiences with loss have taught me how to adapt to constant changes in my living situation and health status. However, most of the time it feels like a curse, as I’ve watched former classmates and coworkers go on to full time jobs and advanced degrees, and travel and dance, and protest, and love and get to be loved.

Access to relationships

I often wonder what would happen to them if they became disabled. I wonder if to meet their basic needs they would flail as hard as I have had to. Or if would it be easier for them because their previous non-disablement meant they lived in a world where access to relationships were abundant, whether those were mundane interactions with cashiers and bus drivers, the professional interactions in the workplace, or intimate interactions with family and friends.

I owe it to my friend Jack for making me ask these questions. On Jack’s porch, less than a month before my hospitalization, we talked about feeling segregated not just from the non-disabled community but also the disabled one.

We acknowledged that disabled people share an experience of ableism, but also the ways that privilege allowed some to access an abundance of relationships with much less difficulty. They can still work full-time employment, enroll as students, or roll out of their accessible housing.

For those of us, however, who are so marginalized by our disabilities that we aren’t able to work, to go to school, to exist outside the small spheres of our homes, whether it be because of poverty, or lack of family, or daily physical suffering created by our bodies, we don’t have access to many of the spaces where relationships happen. It is easy for us to be forgotten.

Still Here, Still Living

Forgotten. That is how I feel most days, staring outside at the trash bins beneath my window, my only glimpse of outside. I am living in a frightening shadow world where my inability to work, to walk, to exist outside of my plaster walls has made me dead to many people I thought wanted me living.

In my current crisis, relationships are not possible unless people come to my physical or digital doorstep to bear witness to me. To see or hear more, they must step into my small world, a five-hundred square foot apartment or a hospital room where nurses and doctors ask if I’ve peed or shit, blood and bruises dot my arms, and I cannot hide the depth of my suffering or my need.

I have learned that need can erode relationships because it causes discomfort. I constantly ask myself what I have done to cause that discomfort, but the more I explore that question, the more I realize that, in being unable to pretend wellness, the discomfort is me.

Contending with discomfort

My support network is now people who can contend with that discomfort. They’re mostly disabled folks who I’ve met online in support groups, friends of other disabled friends, and former professors who taught me words like ableism and how to understand what that looks like. 

I don’t have abundant access to relationships, but my existing relationships are abundant with love and understanding. As such, I know I am privileged. I am alive because the people remaining in my life know how much worse my situation can get.

They know I could be further isolated, neglected, and abused in a nursing or group home. They know if I do not live at home, I will find myself not just further stripped of my voice and identity, but also inevitably exposed to death.

My disabled life is not glamorous, nor is it particularly beautiful. This life is unbearably lonely, often painful, and filled with fear of the unknown about the future. But it deserves to be witnessed.

Dreams and Altars

I may not touch snow this winter or know what my future holds. My savings dwindle and the cost of living rises. 

Yet, if you were to step into my apartment, you would see very well signs of life. There is art on my walls and desk. Stacks of mail, and recycling to be taken out. On a glass table by the living room window, fake flowers sit in the middle of an arrangement of sticks, paper cranes, and candles, my small altar to the Housing Gods. 

Inside each crane, I’ve scrawled out a message in blue marker: “I intend to be granted affordable, wheelchair accessible housing”. And, you know, if a girl can dream – and Housing Gods can grant wishes – then maybe one day I will have a stair chair, a new wheelchair, and some grab bars in my bathroom too.

All I should be able to do

I used to roll into my workplace at a local non-profit. I can only imagine whether the absence prompted by my hospitalization became a source of gossip or barely a whisper. I was “transitioned” off payroll when I needed more time to recover. 

Despite the knowledge that my worth should not be determined by my productivity or ability to show face in the community, the reality of my existence under the dynamics of capitalism is this: trapped in my home and unable to work, I have lost value.

I feel crushed by all that I feel I should be able to do but cannot do. Four months after the first government caseworker showed up at my apartment with her clipboard, my care services were supposed to start. But I received a notice in the mail stating that – before they start – these services would be terminated: “Rachel, we have found that you are not 65 or older, or blind, or disabled.”  

The unsaid message in every system that denies me support is the same: I have claimed I need help to access the community, but I should not need help. I am supposed to be more capable than I am. I should be able to self-actualize my dreams and desires. 

I want to be able to roll around my community and travel the world. However, my body simply will not function in a way that allows me to be integrated into the workforce or be perceived as productive. I fall low on the hierarchy of disabilities imposed by capitalism.

Finding my own worth

I want to tell other people’s stories, but being forced into my home has forced me to tell my own. In early December, my pain and fatigue flared so bad that I could barely move from bed. For weeks, I lost the ability to write more than a few sentences or speak. I had to put writing this essay on hold.

I felt I should be able to make my body function through the fog in my brain and heaviness in my muscles. Eventually, after an angry outburst where I tried and failed to walk from my bedroom to the kitchen, I gave up.

I took the candles surrounding my altar, lit them with a match, and arranged them inside glass jars on the floor. I opened the window and let the winter air inside my apartment. Lying on the floor next to the candles, I realized I don’t have to be like the others.

It is something that is hard to believe, and I need to remind myself of it. So I put a note in my calendar, scheduled to every third week of the month. It tells me: “Everything I need to be I already am.” 

From Home,

Rachel

Postscript: I moved last week. After putting in dozens of housing applications for income-restricted housing these past few months, one of them got approved in early February. I still haven't really processed it... but the new place has an elevator.

Outro

See more from Rachel: her website, follow her art on Instagram and support her on Patreon.

Further reading. Read more brilliant writing from disabled people all over the world.

Let your friends know. Sharing the newsletter is how people find it!

Connect. Get in touch. You can find Peter on Linkedin and Bluesky.

Help us do more. The Debrief is free thanks to reader support.

Acknowledgements

Thank you to Peter for editing this piece and taking the time to talk with me and spark new ideas. Thank you to readers and organizations whose support of the debrief makes this publication possible.

And thank you to Jack and my other disabled friends for reaching out, despite my isolation, and sharing your reflections on community and belonging.