Rachel Litchman

Accessible Housing is Healthcare. It Could Have Prevented My Hospital Readmission.

Posted on September 15, 2021June 8, 2023 by Rachel Litchman

When my friend’s car pulled up to the front door of the hospital, I wanted to feel giddy with relief that I was finally heading home. Instead, my head spun with fatigue and vertigo. My body felt weak and my legs heavy. I kept my eyes closed the entire ride back to my nine-story apartment complex.

When we arrived in the parking lot in front of my building, I sat for several minutes in the car, trying to collect my energy. I had mentioned to my hospital care team that returning home from my six days inpatient would be a challenge; there was an issue with my apartment’s elevator, which meant to get to my room, I’d have to climb a flight of stairs.

On April 11, 1968, the Fair Housing Act was passed, which prohibited discrimination on the basis of race, color, national origin, religion, sex, familial status, and disability. In 1988, amendments were added to the Fair Housing Act that required certain “multifamily dwellings” be accessible to people with disabilities. This meant buildings had to meet certain requirements, like have doors wide enough for people in wheelchairs to get through, or have light switches, electrical outlets, and thermostats in accessible locations. If an apartment had an elevator, then the elevator needed to reach all floors. However, these requirements only applied to buildings constructed after March 13, 1991. My apartment complex, one of the few affordable ones in downtown Madison, was built in 1968. Its elevator, for reasons still unclear to me, did not start on the first floor, but on the second. This meant in order to get to my third-floor unit, I had to climb at least one flight of stairs.

As I slowly got out of the car that afternoon, my head throbbed in the summer heat. I took slow steps through the parking lot to the front doors of my building. In the stairway, I put one foot on the first step and pushed upward. My leg shook. I put my other foot on the second step and pushed upward. My leg buckled. I gripped the railing, but both legs went out from under me. I slid down onto the ground, my calf muscles tremoring with fatigue.

The 911 call led to a long night in the emergency department. Shortly after midnight, a doctor readmitted me to the hospital again because I was too weak to be discharged home. For the next three days, I remained an inpatient. When my attempts to climb the stairs with physical therapy repeatedly failed, the doctor who’d treated me during my first admission suggested I be discharged from the hospital to a nursing home.

It has been nearly a year since these two admissions to the hospital. However, the experience of being ignored by my care team, who refused first to listen to my concerns about the flight of stairs I’d have to climb to reach my apartment, the resultant readmission to the hospital, and the suggestion I be discharged to a nursing home during a pandemic, deeply impacted me.

I feel angry that my care team did not listen to my concerns about climbing the stairs to my apartment, and that anger is only amplified when I think about how my doctor suggested a nursing home as a solution to a problem a working elevator could have resolved. At the same time, I can reflect on how the doctor’s suggestion was a product of an ableist world and a city that is almost completely devoid of accessible housing solutions for people like me who have no family support.

In Madison, where I live, 67.2% renters making less than 30% of the area median income (AMI) spend more than 50% of their income on rent. 13.5% of renters making between 30% and 50% of AMI spend more than 50% of their income on rent. This means people who already have few means are struggling to find affordable housing. Even fewer of those affordable units are fully accessible. Further, the process of obtaining access to accessible housing is in itself a barrier. For example, Wisconsin programs that do exist to help disabled people find accessible housing, like Movin’ Out, require renters who use their program be able to also qualify for long-term care.

In the midst of the current COVID19 pandemic, “Housing is Healthcare” has been a mantra that has run through some medical and social justice communities to recognize the critical necessity that safe, stable, housing provides to individual wellbeing and public health. This mantra has identified housing as a basic human right that provides health through the stability of shelter. People without housing die an average of 12 years earlier than the average U.S. population. Housing prevents people like me, with chronic medical conditions, from seeing their conditions worsen. Additionally, amidst a pandemic, there has been a larger recognition of how housing protects not just individuals, but whole communities, from the spread of infectious disease. For example, in recognition of the benefits that housing provides for public health during a pandemic, the CDC has mandated state governments put in place eviction moratoriums. Even so, discussions about housing as healthcare rarely ever discuss the accessibility of the housing itself as just as critical to wellbeing.

People like me who have struggled in the past to even obtain housing are supposed to feel grateful for anything we get. Even if those conditions are less than ideal, the assumption is that inaccessible or unsafe housing is better than nothing at all. However, inaccessible or unsafe housing can be a risk factor for health crisis and institutionalization just like homelessness can be. Our communities need to work better to create more affordable and accessible solutions for disabled people like myself to live safely in our communities.

Community Living, Health

About

Rachel Litchman

Rachel Litchman (Rachel DL) is a queer, disabled artist, writer, and board member with Disability Pride Madison. She is currently seeking representation for a graphic memoir about her summer hospitalizations during the COVID19 pandemic, which touches upon themes of survivorship, chronic illness, disability rights and justice. You can find her on twitter @wordcalculator.

About Rooted In Rights

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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My Knowledge of My Body is Often Ignored When I Seek Medical Care

Posted on February 28, 2019June 8, 2023 by Rachel Litchman

I walk through the doors behind the front desk of the pain clinic to room number four, the white-walled, two-chaired, one-tabled examination room that looks identical to the room I was in the last time I was here. I fill out the form for the doctor to read; circle my fingers, circle my back, circle my hips, circle my knees on the image of the body to indicate where I’m in pain.

I was diagnosed this November with Ehlers Danlos syndrome, a genetic disease that affects the collagen in my body but feels as though everything from my bones to my muscles to my brain is turning to a mixture of acid and mush. It took seven years of trying to assert the existence of this pain only I could feel or see before receiving this diagnosis. At thirteen, I fell ill with stomach pain. The doctors, noting my weight loss, diagnosed an eating disorder. At fifteen, I broke out in rashes. My hair thinned. My legs quivered. My chest ached. The doctors, noting the quantity of different symptoms, determined stress and perhaps anxiety. I avoided the doctor for three years, retreating, traumatized by disbelief.

I used to believe that diagnosis could grant validity, that having a name could act as key to belief. In a medical system where disabled people’s assertions of pain are invalid, instead validated only through the certification of truth by outsiders, I believed diagnosis would grant me relief, if not from illness, then from the seven years of being told I did not know myself.

But the cycle of invalidation continues. I had not slept for two weeks. I was vomiting. My ears were ringing. My heart rate was climbing into the 180s while I tried to sleep; I told these things to a nurse one night on the phone somewhere in the fog of months post-diagnosis. She told me this was the nature of my condition and I had to better learn to live with and manage it; my degree of pain was not a matter of access to resources that could ease it, but, to her, a matter of my own failures, my own inability.

Before my doctor’s appointments, I sometimes play a game in my head. I imagine myself walking into the examination room and not smiling. Then I rewind and I walk into the examination room and smile. I walk into the examination room and do not cry. I walk in and cry. I walk into the examination room and do not speak. I walk in and speak. Loudly. Endlessly. Regardless of which role I play, I have determined that to avoid having my emotions categorized along with my pain into diagnosis, I must somehow balance myself on my already shaky, hyperextended legs, carefully at the center between extremes.

I am not new to this kind of arithmetic, the calculations made in my head of what will be seen as too few symptoms to schedule a doctor’s appointment, or too much within the limited view of health as single variable. When I was thirteen, I was institutionalized after a children’s hospital could not determine the cause of my weight loss. In the months preceding diagnosis, I was angry. I cried. I spoke. Loudly when I was taken away from my parents. I look at the records I was able to secure five years later, at the diagnosis of anxiety I was given for refusing to cooperate, for making poor eye contact, for appearing “guarded,” in the face of strip searches and supervision in the bathroom. My refusal to willingly hand over any part of myself was my self-preservation but, to doctors who could not see my humanity, it was disease.

The idea that things like a child’s grief after being ripped from her parents arms, a woman’s determination to be believed, and a sick person’s frustration and fear for their life are pathological, diagnosable, disease is ableism. It fills me with an anger I cannot and will not silence.

This kind of emotional pain cannot be circled like my hands or knees or back on any questionnaire. But this does not mean it is not also rooted deeply inside my body, inflamed and aching along with everything else.

Diagnosis can be relief when it gives a word, a name, and a community for a person’s experience, but it can be oppressive when it is used as a tool for dismissal of pain, of self-definition, and of life.

At this latest appointment, the doctor enters the room and tells me it’s nice to see me in person after getting to know me on paper before we met. I wonder, though, what might be different, if she got to know me through, and listened deeply to, my own writing of myself.

Disability History and Culture, Health

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Rachel Litchman

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Disabled People are Worth More Than the Hours We Can Work

Posted on October 29, 2018June 8, 2023 by Rachel Litchman

It was my fourth day of teaching robotics to middle schoolers and during morning session, one of my students pointed to the sticker beneath my collarbone. He traced it to the knot of cords dangling beside my hip and then to the faint green light glowing from my pocket. “Is that an EKG monitor?” he asked.

“Yes,”

“I’ve only ever seen those in hospitals,” he said.

I felt a split second of embarrassment as I tried to explain the device belonged here.

For five weeks this past summer, I was a teaching assistant at my university’s summer enrichment program for academically talented youth. At the same time, I was laboring toward the tail end of a seven year-long process of diagnosis, using tension rods as walking sticks, nearly passing out on my way from the bed to the bathroom at night. My friend, who had worked a similar summer job in the past, cautioned me that the university often exploited the hours of summer to work employees non-stop.

When I looked at similar pre-college summer education programs around the United States, I found requirements such as “Must be able to traverse distances of at least one mile with or without accommodation…” and “Must be able to lift and/or maneuver at least 40 lbs.” The entry-level teaching jobs were riddled with tests of physical endurance.

This worried me. I am a second year college student at the University of Wisconsin-Madison with recently diagnosed Postural Orthostatic Tachycardia Syndrome, a chronic illness that affects the nerves controlling cardiac function, digestion, urination, and breathing. Like my peers, I work under the same conditions of our university’s student labor; I am limited to under 30 hours of work each week to prevent eligibility for employment benefit. For jobs that pay through stipends, I work eleven hour work-days regardless, and my first payment is withheld as a lump sum until far after weeks of labor have already been completed. These conditions, already, are unethical and exhausting. The added disability that causes blood to pool away from my brain from standing or sitting upright, makes even the “normal” demands of work – like staying conscious for eleven hours – dangerous.

This summer, in the absence of diagnosis, I believed I had to push my body past its physical limits. I attempted to go through the disability accommodation request process, but I fell short at the request for medical documentation. Full-time labor and part-time closures of hospital clinics on weekend had placed me in an impossible system where in order to get documentation and diagnosis, I would need more sick days, but in order to get more sick days I would need to supply documentation and diagnosis. I was stuck with my body and my words as the only verifiable proof of illness. In discussions with my boss and with an illness that is largely invisible, I learned quickly, through a system of reluctance, hesitation, and disappointed looks, that my own words, without legal mandate, were not enough to merit accommodation.

I want to be a teacher badly. My best teachers have taught me that work is not the same, or as valuable as passion or effort. At the same time, I also want to be fully conscious at the end of the day. I want the walk home not to feel like a marathon. I want my friends and family and teachers and employers to understand, deeply, that the accommodations that have the slightest of chances at making these wants a possibility are not “privilege” because neither is my right to remain conscious, my right to make it home, or my right to be alive.

This summer, I made a decision to value myself less than the system of labor that demanded I work until my body said enough was enough. By the end of day three, I had fallen far too deep into my last remaining energy reserves. By week two, I was spending the hours back from work sleeping on the floor of my room, too exhausted to move from the places I’d collapsed at night. On day thirty-five, at 1:00 AM in the morning, stuck in yet another invalidating system, trying to explain to an emergency room doctor that I was not an athlete; it was frightening for my heart rate to be so low.

I am more than my productivity and more than what those in power deem as valuable. My value is not determined by my abilities and my worth does not decrease when I am sick or dying.

The university needs to create a workplace where it treats its disabled employees as human, and a system of accommodation that relies on more than the inaccessibly of diagnosis. Accommodation does not mean exception, perk, or privilege: in more than one way, it means life.

Disability History and Culture, Employment

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Rachel Litchman

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We Need to Break Through the Silence on Abuses of Institutionalized Children

Posted on July 17, 2018June 8, 2023 by Rachel Litchman

Content note: this post discusses psychiatric hospitalization and sexual abuse.

When I was thirteen years old, I was sexually abused by a staff member in a psychiatric hospital. The first time she abused me, she took me into the examination room for a routine strip-search. She stripped me of my clothes, threw a tissue box at me because I was crying, and laughed that I was “snotting all over myself.”

The second time she abused me, she took me into the exam room for an EKG. She made me, again, take all my clothes off. She had me lie naked on the examination table. In the hour-long events that followed, the ways she touched me she called “procedure.”

I did not speak about what happened in the hospital for four years. I was thirteen, unable to define sexual violence beyond heteronormative stereotypes, and told by the police officer on duty, when I asked to call my mom, that what had happened was not illegal. At that age, my privilege granted me the perspective of seeing illegal as synonymous with wrong and legal as synonymous with right. The fact that the staff member would not be punished for what she did made me believe I was not human enough to be wronged by violence. I spent the next five years convincing myself I was wrong to feel traumatized, and even as I began to research definitions of sexual violence and understand what had happened to me, I never spoke up until four years later.

As an undergraduate now at the University of Wisconsin-Madison, I am speaking more about my experiences. In April, I wrote a speech about my abuse at the hospital for Take Back the Night. Following the speak-out, a woman lingered behind on the steps and thanked me. She thought she was the only one who had been abused as a child in a psychiatric facility. Later, we met for dinner and shared our experiences; the stories she told me were proof that the abuse of institutionalized children is both a national problem and largely silenced.

I have been made to believe that the violence I experienced in the hospital was a statistical anomaly. No story of sexual abuse in a psychiatric facility has ever made it into the mainstream consciousness, and when I began to search the internet for stories similar to mine in the Chicago area, the most in depth article left the details of sexual abuse seemingly, protectively, vague. Without solid statistics or widely publicized stories of sexual violence in psychiatric settings, it feels as if I am unable to say “me too” but instead only an isolated “me.” As a result of the public silence, I feel as if I’ve been told my experiences are not about systemic dehumanization, but as a result of individual flaws.

But the abuse and sexual abuse of institutionalized people is systemic. Despite the lack of public outcry, the state-sponsored abuse and even the murder of people with psychological disabilities is a pattern. Activist, lawyer, and author of Invisible No More: Police Violence Against Black Women and Women of Color, Andrea J Ritchie, writes in her book that national statistics reveal “roughly a third to a half of all people killed by police are disabled” and a recent study by the Washington Post reveals that a quarter of individuals killed by police were labeled as mentally ill. Additionally, through Ritchie’s inclusion of women of color’s experiences with strip and body cavity searches, surveillance in bathrooms, and sexualized encounters with police, Ritchie expands the picture of sexual violence to include abuse that often gets justified on the basis of controlling images of black, disabled, and queer people as inherent ‘criminals.’

While Ritchie has put the light on the experiences of black woman and their interactions with police, she does not ignore intersecting identities of disability, class, and gender. Ritchie’s text is essential for the understanding of how the state-sponsored abuse of marginalized people often gets excluded from conversations of sexual violence and how in a white, ableist, heteronormative society, abuse of power thrives in paradoxical language; police violence against women of color is enabled by police who have the authority to define and punish violence, and for me, as a disabled person supposedly under the “care” of the staff member, her role as “caregiver” granted her the authority to define what care was even if it was abuse.

My hope is that one day people with disabilities, and not just people with disabilities, but also people whose experiences with disability are locked outside of public view, will no longer have to empathically insert ourselves, but be included already as an acknowledged part of conversation on sexual violence. Until then, it feels essential for me to say for myself, and for others abused in psychiatric settings, us too.

LGBTQIA+, Sexual Harassment and Abuse

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Rachel Litchman

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