How Disability Theories Exclude People with Chronic Pain
Disability is a complex topic, so naturally, there are many ways to think about it. The disabled community has different ideologies — some people view their disabilities as blessings, while others don’t like the word “disability.” There are also academic theories of disability, and as I’ve been exposed to them, I’ve noticed how people with chronic pain are excluded.
From a medical model to a social model
Until recently, disability was understood through the “Medical Model.” This model frames disabilities as defects that need to be “fixed” through medical intervention. The responsibility is placed on the individual to become “normal” and fit into society. Since then, academic discussions have begun to favor the “Social Model,” which frames disability as a problem with our society not being built for disabled people. In this model, a person who uses a wheelchair would no longer be disabled in a completely wheelchair-accessible society.
The Medical Model is flawed, as it frames disability as a bad thing and implies that disabilities can be “fixed.” And while there are good things about the Social Model (particularly, it doesn’t frame disability as a bad thing and places responsibility on society to become accessible), something about it doesn’t sit right with me: the Social Model of disability excludes people with chronic pain.
I would still be disabled in an accessible world
Of course, it would be great for society to eliminate all barriers as the Social Model suggests, and I hope it does. But for certain types of disabilities, like chronic pain, eliminating barriers doesn’t eliminate the disability. Even in a perfectly accessible world, my autoimmune disease would still cause me suffering and because of that, I would still identify as disabled. Changes in society won’t magically make me able-bodied — nothing can.
I understand the intent behind the Social Model — society should be designed for people of all abilities to participate fully. But we can’t forget that there is also an individual component to disability. My chronic pain and fatigue exist whether or not I am interacting with the world. My symptoms are constant and hinder my ability, even when the best accommodations are provided. This also applies to any other disability that causes individual suffering.
By implying that my disability only exists when I am faced with environmental and social barriers, the Social Model ignores the suffering that exists regardless of context. My pain follows me wherever I go, and I want people to acknowledge that.
Why should elimination be the goal?
I’d also like to point out that when you boil down to it, the central goal of both the Medical and the Social Models is to “eliminate” disability altogether, either through medical intervention or societal changes. But why should that be our goal? It’s time for disability academia to re-think its motivations and ensure the inclusion of all types of disability.
I hope that researchers continue to use the Social Model of disability, with some major adjustments made. The focus on eliminating barriers should persist, while also acknowledging that some disabilities will never disappear. The experiences of people with chronic pain need to be validated.
Can you tell when a flare is coming?