Sick of Exclusion: Making Space for Chronic Illness in Disability Advocacy Spaces
By Gloria M. Bennett
When I developed an autoimmune disease at the age of 28, I didn’t think of myself as disabled. I was sick. I saw the two as separate states of being. Disability, I thought, was static and predictable, existing the same way every day. That wasn’t my experience. I struggled to get out of bed for more than a few minutes at a time, used mobility aids, and needed support in many basic tasks of living. But the level of my symptoms fluctuated — from fatigue to fevers to neuropathy to cognitive changes, nothing about my experience was the same two days in a row. With my symptoms, my abilities varied, too. Some days, I had the energy to complete full paintings or build furniture. Other days, I couldn’t hold my arms up long enough to wash my own hair. Illness moved in waves.
As I found a diagnosis and treatments that worked, my experience slowly shifted. Some days I could go hours without needing rest or assistance. I shopped for clothes, took my dog to the groomer, and played with my niblings when they visited, without the need for support or a mobility aid. But when I pushed too hard, caught a virus, experienced a higher level of stress, or just had a bad day, I’d land right back in bed, my needs and abilities shifting, once again.
The unpredictable nature of my chronic illness made me unsure if I belonged under the umbrella of disability. It felt somehow like stolen valor — claiming an identity I didn’t fully inhabit one hundred percent of the time. What I didn’t want to do was treat disability like an outfit I could don and discard as it suited me.
But I wasn’t the only person feeling this sense of confusion. When podcast host and writer, Brianne Benness, coined the term “Dynamic Disability,” it finally gave me and other chronically ill people language to explain our experience to others. Describing what pushed her to name this phenomenon, Benness writes:
“Two years ago, I would have said that I had an invisible disability…But at the time I didn’t recognize that I also had a static disability: my needs and abilities didn’t really change much from day to day…[Now] I can walk downtown for a coffee or to buy groceries and I can dance at my friends’ weddings. But when people see me doing these things, they usually don’t recognize all of the attention and rest that have allowed me to enjoy those moments. And in those moments, I genuinely don’t need accommodations. My disability is no longer static, it’s dynamic. My needs and abilities are different from day to day.”
A dynamic disability is exactly what it sounds like — a disability that lacks consistency. One that demands different accommodations on different days, and sometimes, none at all. This new phrase helped me to find comfort in my identity as a disabled person, and within the disability movement.
But as I’ve expanded my work into broad disability rights spaces, I’ve occasionally encountered less solidarity than expected. There are some activists that still harbor the same belief I did: that illness and disability are two distinct, unrelated experiences. In some contexts, people with chronic illnesses are still intentionally excluded from disability movement spaces, and the reason is more complicated than it seems.
In the Western medical tradition, disability and illness were long conflated into a singular, dehumanizing category — “invalid” — a word now widely recognized as a slur. It was understood that a person whose body was considered non-normative was wholly unable to participate in society, unless they could be medically “fixed” or “cured.” This view of any state of disability or illness as “globally incapacitating” was cited as justification for violating the rights of people with disabilities, including involuntary institutionalization and eugenics via forced sterilization. It also resulted in a standard of pity, shame, and ostracization for those who could not, or did not want to, be “cured.”
The fight against these practices is still being waged across the world, today. But instead of rejecting the mistreatment of all of the people that fell under the umbrella of “invalid,” some activists built their arguments for disability rights by first accepting the premise — that a group of globally incapacitated people existed, to whom this type of thinking applied. A number of important battles, including against the medical model of disability, are fought and won on the back of this distinction: Defining disability in opposition to systemic illness. Framing disabled people as deserving of rights because they’re healthy.
In her 1999 book, “Exile and Pride: Disability, Queerness, and Liberation”, Eli Clare says, “To frame disability in terms of a cure is to accept the medical model of disability, to think of disabled people as sick, diseased, ill people…. My CP simply is not a medical condition. I need no specific medical care, medication, or treatment for my CP; the adaptive equipment I use can be found in a computer catalog, not a hospital.” (Clare in Wendell, 2001)
Clare was right, as are other disability rights activists — the medical model of disability does everyone harm, and should not be the prevailing way of framing disability in our societies. However, the emphasis placed on divorcing disability from a medical context often makes chronically ill people the scapegoat. In Clare’s quote, it’s easy to recognize the purpose that “sick, diseased, ill people” play in the comparison. We are the wretched thing that disability is not — a state of existence in need of correction.
Although the chronic illness community as a whole also rejects the medical model of disability, our ill health incapacitates many of us, leaving us restricted to our homes for lengths of time. It also keeps us in close proximity to the medical field. Some individuals may even desire a “cure.” That desire doesn’t stem from internalized ableism, some deep-seated need to feel “normal,” or negate support for a movement to a more inclusive model of disability. But it does complicate what inclusion actually looks like. For most chronically ill people, treatment is a necessary part of alleviating pain and surviving. That treatment, and our experience in general, often includes a great deal of medical ableism. Talking about an accessible, equitable world for chronic illness demands talking about medical systems.
This invocation of the medical system represents a history of violence that has been wielded against disabled people for centuries. In many ways, it seems more important to reject language that puts medicalization and disability in the same sentence, wherever it’s coming from, than to engage with the ways it contrasts and complicates the movement. To reject the abuse that resulted from the conflation of disability with systemic illness, many disability spaces have felt compelled to reject sick people, too. And though the cause of this reaction is somewhat understandable given the historical context, we can now recognize it as a form of lateral ableism that removes our autonomy, reinforcing sick peoples’ role as objects in and victims of the medical system — a role that these activists reject for themselves.
While the inclusion of diverse disabilities can be a challenge in some movement spaces, it is not universal. As I broadened my understanding of disability, I found something more than language to describe my experience. I found community in the Disability Justice model and movement — a movement that not only included chronically ill people, but that made no distinction between sickness and disability. As performance art collective, Sins Invalid, writes in Principal 7 (Commitment to cross-disability solidarity) of their seminal “Principals of Disability Justice,”:
“We are building a movement that breaks down isolation between people with physical impairments, people who are sick or chronically ill, psych survivors and people with mental health disabilities, neurodiverse people, people with intellectual or developmental disabilities, Deaf people, Blind people, people with environmental injuries and chemical sensitivities, and all others who experience ableism and isolation that undermines our collective liberation.”
Disability justice’s focus on collective liberation as opposed to individual rights means that nobody, regardless of their type of disability, becomes scaffolding in someone else’s climb to equality. The fifth principle of disability justice, which focuses on the wholeness of the individual, means that it’s okay, too, if things are complicated and messy. As human beings, some of us will have close relationships with the medical field. As sick people, much of our advocacy work is in relation to healthcare access and equity. Those things can be true while we also insist that disabled people don’t need to be fixed or cured to have value. That we are whole people, not patients. That the world is not built to include the plethora of ways our bodyminds exist, but that it can and should be. We can hold multiple truths at once, and use them to care for each other.
As case numbers of Long COVID grow, it is more important now than ever that disability movement spaces take steps to include people with chronic illness. I encourage other disability rights activists to think about what that inclusivity really looks like. Maybe it’s mandating n-95 masks at all in-person events, or guaranteeing virtual access to meetings. Whatever that first step is, 2024 seems like a great year to take it.
About the author
Gloria M. Bennett is a disabled woman living in Upstate New York with her dog, Bogey Lowenstein. She has a professional background in international relations and writes creative nonfiction at the intersection of fatness, gender, disability, and politics. She is a contributor at HuffPost and is currently working on a memoir about becoming chronically ill while living in Scotland.
