The modern-day term for an institution is a long-term care facility. It’s become “politically-correct,” but, I think, it’s evolved into a way of softening the reality and putting a patch on a major hole in the system.
The difference between the terms is simple: one’s jagged and the other’s smooth. Vulnerable people — or their families — pay a fee to live there and have professionals on-call, in case of an emergency. But the COVID-19 pandemic has been the emergency of all emergencies, and this system has all but collapsed since March.
According to The COVID Tracking Project, those in long-term care facilities represent less than 1% of America’s population, but account for nearly four in 10 US COVID-19 deaths.
I wrote last week that some of us have deemed these lives expendable during this pandemic. Such ideas are reflected — rooted — in our system. Our irresponsible system that’s existed longer than any of us. Our system of ableism that judges potential and value based on needs. Our system that once awaited a pandemic like this.
To sum up the system briefly, it’s an attempt to centralize support for those in need, whether it be the elderly or people with disabilities or other health problems. In doing so, however, it creates a situation for disaster, congregating those who, naturally, are most vulnerable to disease and have the hardest time self-isolating once contracting an illness. It creates a COVID-19 breeding ground.
The system is broken — it has always been — and now, we are seeing why we must eradicate it. It leaves little middle ground: adults with disabilities are either left to live with family members or friends or go to a facility. It grounds society in the medical model of disability, suggesting people with disabilities are unfit for society, not vice versa. Doubling down on that narrative, it isolates people with disabilities from the rest of society, from people without disabilities. It is segregation, plain and simple.
But what does a better system look like? I will first say it begins with a better healthcare system — one that fits the individual needs of all people. It can’t be so restrictive.
In my experience, agencies, insurance companies and bureaucracies dictate what are and aren’t appropriate services for those with disabilities or underlying conditions. They use slick definitions and distinctions to limit the support available, like saying personal care assistants aren’t necessary unless they would be administering medicine. We, as individuals with disabilities fighting on an island with our family and friends, don’t have much of a response. If our needs don’t coincide with what the system is prepared to provide, there’s not much we can do.
We are desperate for a more individualized system; one that doesn’t take advantage and exclude people with disabilities from society, one without the facilities that resemble ones from the 1950s and most importantly, one that’s flexible enough to fulfill the unique needs of individual people with disabilities.
In other words, we must restructure the system where people with disabilities are able to get what they need. To be independent, to obtain my rights of life, liberty and the pursuit of happiness, I need help. Able-bodied please have retained those rights from birth, by simply breathing, why can’t I — why can’t we?
The system suggests long-term care facilities are the most feasible options for us. But they aren’t, and they represent the opposite of inclusion. They isolate people with disabilities, many of whom cannot advocate for themselves, and ultimately remove us from mainstream society. It’s a system of ableism that enables itself repeatedly — so much that it’s become acceptable and normal. It is pure segregation.
This is pretty simple: the system of housing people with disabilities together needs to be a thing of the past. And if we are true to our said-mission of protecting the vulnerable, we will eradicate the system.
The response is always: how do you find people to do this work? Well, there are people currently working at the long-term care facilities who would transition great. Plus, there are millions of people each week looking for jobs. And some people wish they had a job through the government. We would be able to find the people. Finding the money shouldn’t be a problem, either. If we can find the money to support families during a months-long pandemic, we can find the money to fund assistants for those with disabilities. It all revolves around: how serious are we, as a society, about making this a country for all people?
Originally published at http://www.wheelchairqb.com on January 7, 2021.