CW: Institutionalization
Going to the bathroom at night is a challenging task for Issac Wide. Movement is a challenge. His daily routine is built upon a care system designed to maintain his safety and dignity. That routine has been compromised lately, and he feels his dignity waning. The safety and care he has relied on for so long, have put him at risk.
Wide, 30 lives in Bradley Stoke, England. He lives in supportive housing run by the Milestones Trust. Born with spastic quadriplegic cerebral palsy, he needs two caregivers to help him transfer between his wheelchair, the bathroom, and bed. His local council provides overnight care. Unfortunately, they only provide him with one caregiver.
Care is supposed to be designed to make him and others feel safe. For most people without disabilities, going to the bathroom is a simple task. For him, going to the bathroom is a task filled with fear and shame.
Wide is not alone. When the support that makes life manageable disappears, there is a loss of security and stability. 36-year-old Ravi Mehta who has Duchenne Muscular Dystrophy, knows all too well what this feels like.
Last year, he went to the hospital to have the settings adjusted on his ventilator, something he had done many times. Even after doctors cleared him to go home, he couldn’t go home. Without 24-hour care, he was not able to leave the hospital. What was meant to be a routine appointment, has become a months-long stay at the hospital.
Lucinda Ritchie, 33, had every reason to think she would be supported when she was ready to go home. She had been in the hospital for nearly a year and was looking forward to returning to her accessible home, where, with the help of full-time nurses, she lived independently.
What happened next was a nightmare. Without her consent, she was moved to a nursing home an hour from where she lived. Even as she protested, the ambulance staff went so far as to turn off her power wheelchair. It did not take long for her condition to deteriorate; within a matter of days she was back in the hospital.
The future she had been in charge of was now in the hands of a system more interested in fixing what it saw as a problem than in supporting her. “This is akin to torture,” she said in a video from her hospital bed, asking what the point of her life was.
These stories are not anomalies. They reflect a long history in which disabled people were institutionalized not because they needed to be, but because society failed to provide the necessary support for them to live in their communities By the 20th century, much of the focus was on promoting independence and inclusion instead.
Yet today, that progress is unraveling. When home healthcare workers are underpaid, when funding is cut, or when bureaucratic hurdles disrupt services, hospitals and nursing homes become the default option. Independence becomes a privilege granted only when bureaucratic barriers are overcome.
In the United States, these challenges shape ongoing debates around Medicaid. For millions of disabled people and older adults, Medicaid is not just a program—it is the lifeline that allows them to stay in their homes. It funds personal care assistants, private-duty nursing, and other services that help prevent unnecessary institutionalization. Without these services, many people would have no option but to enter long-term care facilities.
Unfortunately, this reality is all too familiar to me. Due to my cerebral palsy, I have depended on personal care assistants since childhood. My PCA helps with dressing, bathing, cooking, and other everyday tasks that make independent living possible.
Without this support, I could not stay in my own apartment or maintain connections in my community. Medicaid is the cornerstone that allows me to live life on my own terms.
Last month, that care became uncertain. My PCA hours were cut. I spent three exhausting weeks preparing an appeal, collecting medical documents, and explaining why every hour mattered. Last week, my request for a fair hearing was denied. I have reached out to local legislators, hoping someone will listen before the consequences become irreversible.
Though often seen as budget cuts, these decisions impact whether daily life remains stable for people like me. They determine if we can get out of bed, prepare meals, use the bathroom safely, go to work or school, and stay active in our communities.
For millions of disabled people, the impact of these systemic failures is already painfully evident. For many others, the fear is not only what has happened but also in what might happen next if the support systems that hold their lives together continue to deteriorate.
Sources:
Hixenbaugh, Mike. “Families Caring for Disabled Relatives Face Unthinkable Choices as Medicaid Cuts Loom.” NBC News, 15 May 2026, https://www.nbcnews.com/news/us-news/trump-medicaid-cuts-threaten-caregivers-disabled-family-members-rcna344930.
Holmes, Jonathan. “Lack of Toilet Overnight ‘Humiliates’ Disabled Man.” BBC News, 21 May 2026. https://www.bbc.com/news/articles/cy82v8l02y8o
Witherington, Erica, and Nikki Fox. “Disabled Man ‘Rotting’ on a Hospital Ward – Despite Being Fit to Go Home.” BBC News, 19 May 2026, https://www.bbc.com/news/articles/c2e2zvlyy38o.
Witherington, Erica. “Disabled Woman Put in Nursing Home Against Her Will Says She Feels ‘Betrayed.’” BBC News, 24 Feb. 2026, https://www.bbc.com/news/articles/czj1ndzz9xyo.