In conversations about progressive conditions, one of the most common attitudes I encounter is that they’re awful and horrific. They leave people isolated and alone, living in nursing homes staring quietly at the wall and waiting to die. These arguments are used as the underpinning of assertions that people with progressive conditions live inherently unfulfilled lives and must long for what they don’t have. They’re also used to suggest that having a progressive condition automatically equates to a very low quality of life, which is used to make value judgments about the lives of people with disabilities.
The thing is that this attitude is based in a very outdated notion of disability, one where it is acceptable and even necessary to stick people in long-term care facilities with no enrichment, no human interaction, and minimal treatment focused on comfort care only. While that may be what some people choose, it shouldn’t be the only option. People need and deserve access to community-based care where they can stay in their homes or small group facilities in their communities, rather than being isolated in nursing homes.
It is possible to have a great quality of life while living at home, but that requires some source of enrichment and interaction. It requires being treated with dignity, as a human being, and working with people who can adapt your environment to your progressive disability. As you experience varying levels of impairment, your home can adapt with you; and, ideally, if it follows the school of universal design, it’s already ready for you, allowing you to gracefully age in place.
Being stuck in a nursing home with only a television to stare at would indeed be awful. It would be a terrible life. And there’s a reason some people with disabilities stuck in that position feel that life isn’t worth living. Yet, the problem here isn’t with the fact that they are disabled, but with the fact that society isn’t interested in creating a space for them, accommodating them, welcoming them as fully-realised human beings. If people who need skilled nursing care actually get that care while also seeing friends and family, having a chance to interact, being given opportunities for being in their communities, their quality of life improves.
The assumption that disability is isolating approaches the problem from the wrong direction. People are isolating, and they isolate other people on the basis of their disability status. When measures are taken to open up the world, disability doesn’t have to be a life of solitary confinement in a facility far, far from the public eye. It can be an active, public, fully-lived life. A different life than what nondisabled people consider to be the norm, yes, but that doesn’t make it less valuable.
Does this mean that progressive conditions would be barrels of sunshine if everyone could just stop being ableist? Of course not. There are things that don’t go away because they are medical aspects of disability that aren’t going to change; you can still be at risk of bedsores, of infections from your catheter, of searing nerve pain, of a host of other potential medical complications. Dealing with those can be frustrating and may require a lot of your time and energy. For some, these medical aspects of disability are overwhelming and always will be, even with a support network of people working around them to build community rather than shutting them out of public spaces.
To pretend otherwise would be to deny their experiences of frustration and rage at their disabilities, as well of their experience of poor quality of life because of their disabilities.
But this doesn’t mean we don’t owe people a better world. It doesn’t mean we shouldn’t try to create a framework in which progressive disability is not viewed as an immediate sentence to immurement in an isolated facility until the patient dies; it means a rethinking of disability, to think of people as much more than ‘patients’ who require medical treatment. It means reapproaching the way we manage complex progressive medical conditions. Someone living with a progressive neurological disease is going to experience escalating complications and growing problems with tasks of daily living, but that person is still a human being, and deserves dignity and respect.
Not isolation in a hospital bed with a television turned down low.
Nondisabled people thinking about disability often try to imagine their lives as disabled people, thinking about it in terms of what they think they know about disability. They know that nursing homes and long-term care facilities exist, they know that people with severe disabilities are often isolated in them, and so they decide that disability is isolating. What they don’t think about is that the question here may not be whether disability is isolating, but whether current frameworks for handling disability are isolating, if there is perhaps another approach that doesn’t leave people alone in the cold, waiting for death.
Movements like ADAPT are fighting to liberate people from nursing homes and they get scant attention from the nondisabled community. This is telling, and suggestive of a belief that it’s necessary to trap people in nursing homes rather than to help support their lives in the community, to build spaces where they are welcome instead of tolerated. It’s critically necessary to deconstruct this assumption, to build a world where people with disabilities are not immediately sent away for being ‘too difficult to provide for.’