大象传媒

Recently I received a message from a journalist : 鈥淎lice, I thought about you often when I did my story on an extraordinary, emerging advocate鈥�18-year-old Alexis Ratcliff, a vent[ilator] user, who has lived in a North Carolina hospital for five years.鈥� He continued, 鈥淣ow [the hospital has] sued her to force her to accept placement in a nursing home out of state. And NC Medicaid isn鈥檛 putting together a place for her to live at home.鈥� 

When I tweeted about this article, people were shocked that a young disabled person had lived in a hospital for five years. But it didn鈥檛 surprise me at all, even decades after the passage of the Americans With Disabilities Act in 1990 and , a 1999 Supreme Court ruling that found it鈥檚 tantamount to segregation to force disabled people, who could otherwise live in the broader community, to live in institutions. The Olmstead ruling also insisted that public entities must provide community-based services for those who wish to use them. This is a struggle I understand intimately.

Born with a neuromuscular disability, I am a wheelchair user and have a tracheostomy, a hole in my throat connected to a ventilator that allows me to breathe. I have a team of caregivers who work for me around the clock. Medicaid covers some of the cost, but I also have to crowdfund out-of-pocket costs that total $840 per day. This is not sustainable, yet here I am, treading water until a medical or financial crisis forces me to abandon the family I鈥檝e built with my cats, .

Some disabled people must live in a nursing home or hospital due to their complex medical needs and the lack of and . Medicaid, , is structured in a way that forces disabled people into impossible situations. States are required to provide care in institutions, but community-based services are optional, often with long waitlists. found that nearly 700,000 people with disabilities are on lists for these services, with an average waiting period of three years. Ratcliff is one of many people who have their entire lives on hold because of institutional bias. 

Two years ago, I was in the ICU, which left me unable to speak or eat by mouth. I was determined to return home, but we could not find the additional help I needed. When my sisters relayed this to the discharge planner, he matter-of-factly said we had two choices: Family members would have to indefinitely fill in the gaps, or I could be transferred to a facility outside of the county. I burst into tears. I raged silently, but my face expressed my terror at this prospect. I felt so powerless and fragile, tethered to structural ableism designed to warehouse people like me purely because of our bodies. I have always been vulnerable and dependent on others, but in that moment, I, like so many disabled people, was seen as nothing but a burden, a drain on society, a collection of diagnoses and expenditures. 

My sisters consoled me, saying, 鈥淲e鈥檙e going home, and we will make this work,鈥� pulling me out of the depths of shame, guilt, and fear. Without their support I could easily have been persuaded into thinking that living in a facility was the only option. So many people are in this system designed to disappear us. This haunts me daily.

In January 2024, I was reminded again of in a nondisabled world: My feeding tube ruptured, and I couldn鈥檛 get it replaced until the following week. Meanwhile, the tube began coming out and my abdomen became distended, tender, and rigid. When I could not tolerate the pain anymore, I went to the emergency room. 

I arrived to discover many patients, staff, and health care providers unmasked. When I lay on the exam table to have my tube replaced, I could not communicate the excruciating pain I was in throughout the procedure because they would not allow my smartphone or caregiver in the room. I tried mouthing words, but no one could understand me. My body shivered, every nerve ending tingling as I tried to hold on. 

Two days in the hospital felt like two years. Laws like the ADA require only the bare minimum of care, and there is no enforcement. Compliance cannot be forced, even on people who do not see you as fully human or deserving of the right to access the same space.聽

Disabled people constantly navigate hostile environments, especially health care settings. Here people in positions of power can say whatever they want while patients have to give citations, articulate clearly and effectively, and have the presence of mind to push back during acute, potentially fast-moving situations. I have been advocating for my health with doctors since I was a child, but this latest experience shook me. They gaslit me about my valid concerns of mistreatment. Even with all my social capital and resources, I was reduced to nothing. I thought of all the patients on the same floor who were alone, scared, and suffering.

When will disabled people be free to just be and to fully participate in society with autonomy and dignity? Liberating disabled people is a constant collective effort that at times feels like a distant mirage. Alexis Ratcliff had no choice except to live in a hospital for many years and now is being forced to leave even that semblance of a home. I only recently created a home of my own, which took decades of planning, scheming, and manifesting. The constant labor of ensuring my freedom weighs on me heavily. It should not be so hard to survive鈥攁nd survival is not enough. 

wrote that 鈥渃reating access is a critical way of showing up in solidarity.鈥� If we lived in a world that placed access above all, creating access would be a collective responsibility. In this world, cultures of care would ensure that carceral institutions like nursing homes are abolished; people, not profits, would be the priority; care would flow generously without restrictions from the state; and people like me would be secure knowing we are valued and wanted not for what we can produce but for who we are. This world鈥攁n accessible one centered on justice鈥攚ould be ruled by a simple phrase always put into practice: 鈥淣one of us are free until we all are free.鈥�