consider pain: why the social model of disability fails

pain punctuationToday I am spurred to rant about the social model of disability and why it’s inadequate.

The social model says, essentially, that disability, rather than being a characteristic of an individual, is created by society. On its surface, this is super useful. For instance: if a building has stairs, and a person cannot go up them because they use a wheelchair, then the disability is caused by the lack of a ramp, and by the lack of universally accessible design more broadly. Problems are also caused by ableist attitudes, both interpersonally and within larger power structures.

So far, I totally agree. When the built environment is designed on the assumption of a normative set of physical or mental abilities, then all who fall outside that set have trouble navigating it. Which includes almost all of us, eventually, as we age. It’s good for pretty much everyone if we shift the environment to be friendlier to a wide range of people with disabilities.

But the social model is not enough.

For over twenty years, I had a slow-growing spinal cord tumour that caused gradually increasing chronic pain. By the time I was diagnosed, I was hurting almost 100% of the time. Sitting, standing, lying down, moving, staying still: always pain. If there was an escalator or elevator, I would take it. Accessible seating, great! But none of these things stopped the hurting.

So you know what pisses me off? People insisting that all disability is socially constructed. Because yes, sure, some elements of the built environment made things harder on me. And absolutely, certain social systems did me no favours. But my body fucking hurt. From the inside. In nerves and tissues. This wasn’t because of building design or bigotry. It was because I had fucking cancer—long-term, long-undiagnosed, recurring. If angels had magically come and transported me to every place I needed to go, gentle as a drifting feather, I would still have been in unbearable pain.

And you know what helped? Diagnosis and treatment. Like, good old-fashioned Western medicine: an MRI, surgery. When the tumour grew back, a pain clinic, and eventually another surgery, and radiation. Not a ramp or an elevator or a more anti-ableist attitude on the part of a social structure. Not pride in my disability, or a new identity as a person with a disability (though I did acquire the latter as part of the process). Just straight-up medical help. Scalpels and anaesthesia and staples. Evil death rays. I have many, many beefs with the medical system, and I had to fight some truly shitty battles to get the treatment I needed. But the end result was: it worked.

When activists and theorists say “disability is created by society,” or worse, “ALL disability is created by society,” the subtext I hear is, “Your pain is (was) inconvenient to our project of changing the world, so shut up about it and get with the program.” This is bizarre, it seems to me, because “it hurts” is like a basic unit of human experience. And with exceptions for various voluntary ordeal-type experiences and pleasure transmutions, we all pretty much understand that pain sucks. So it doesn’t seem like a stretch to say that ending pain should be a pretty fucking obvious, easy goal for any movement that values, well, human beings.

As such, while I can fully get behind the need for accessible design and improved social attitudes, there is zero reason why that should come at the price of obscuring people’s actual physical, bodily pain, or de-prioritizing their access to speedy and well-targeted treatment.

I have fought many a doctor who said “your pain isn’t real” or its equivalent.

“I’m sure you’ll feel better soon, just rest some more.” (This, when I was barely able to leave the couch.)

“How are your stress levels? You might need to deal with your anxiety.” (I don’t have anxiety. Anxiety is a real mental illness which merits treatment, not a handy excuse not to take someone seriously.)

My all-time favourite: “You might just need to learn to cope with this.” ACTUALLY YOU MIGHT NEED TO GET ME INTO A PAIN CLINIC OR I MIGHT LITERALLY DIE, YOU SMARMY PIECE OF SHIT. (I fired that doctor.)

So why would I accept even the barest hint of that attitude from within the disability and anti-ableism movement? What use is a great set of anti-ableist politics if those politics try to convince me that my disability lives out in the ether somewhere, intangible and diffuse, taking form in staircases and inappropriate seating, in contradiction to my lived bodily experience?

According to People With Disability Australia, “From the medical model, a person with disability is in need of being fixed or cured. From this point of view, disability is a tragedy and people with disability are to be pitied. The medical model of disability is all about what a person cannot do and cannot be.”

Yes. I needed to be fixed and cured. My disability was a tragedy: it robbed me of more of my life than I can bear to look at head-on some days, and I’m still picking up the pieces even two and a half years past the end of pain. I don’t want anyone’s pity, never have, but if pity ever motivated a medical professional to hurry the fuck up and help me? I’d have taken it. (In fact I think my stoic demeanour didn’t inspire enough pity and that in turn stretched out my suffering—but that’s a rant for another day.)

My disability was all about what I could not do or be. There is no silver lining. There is no narrative, political or otherwise, that redeems my suffering. The only application of the social model that I would have found useful would have been if it had somehow been about easing my access to treatment and cure as diligently as it wants to ease people’s physical access to buildings.

I know that my experience cannot be universalized to all people with disabilities. Some disabilities don’t hurt at all. Others cause pain but the physical pain is vastly outstripped by the social barriers in terms of the severity of consequences on a person’s life. Still others hurt, but in ways that have more to do with the emotional or mental spectrum than the body, or that blend the two. Social stigma tends to accrue to the most visibly disabled people, and chronic pain is notoriously invisible for many of us. We may face lots of other stigma, especially from doctors, but many of us don’t get stared at on the street.

All this to say: I don’t pretend my experience applies to everyone. But I do know I’m not the only person whose number-one priority has been to find a way to stop the pain.

When activists avoid discussing or accounting for pain, it feels like more than an oversight. It feels like a deliberate obscuring of an inconvenient truth that doesn’t fit with the agenda. It feels like creating a hierarchy where “good” people with disabilities blame society and find pride in their difference, while “bad” people with disabilities seek treatment and cure, and wish for an end to their suffering. It feels like a turning away from the body, like so many supposedly progressive theoretical models do, as a way to seek a kind of fraught legitimacy that only functions at the price of self-denial. It’s a bizarrely WASP-y, ascetic approach, and I want no part of it.

Some activists suggest that the concept of impairment can be useful here, impairment being located in the body but not necessarily resulting in disability. As in, impairment exists, but if society accommodates impairment, it is not disabling. I know that’s one way of trying to work around the issues that come with the social model, but it doesn’t entirely succeed.

Impairment still implies a functional issue—“I am unable to do X because Y.” Pain, however, is not about impairment. It’s not about functionality. Pain can effectively impair people, yes, but the primary focus is suffering. It’s a third category: pain might cause impairment, and impairment might lead to disability in the wrong environment, but pain is really its own thing. I find it really troubling how even the “impairment” alternative turns away from the body and from suffering.

Beyond that, this hits a basic consent issue. If I had been assaulted by another human being in ways that caused me equivalent pain to what my body was doing all by itself, that person would have been committing egregious crimes on the daily for over twenty years. No progressive activist would suggest that’s acceptable, or that it should be in any way minimized. If an institution or social structure was causing that pain, it would be called “institutional violence” or “structural violence” and rightly decried. So it boggles my mind that disability activists attempt an end-run around people’s non-consent to suffering by pushing for a narrative that minimizes pain.

While society needs to change both physically and in terms of attitude in order to make life easier for people with disabilities, I cannot fully support any model of disability that refuses to face the reality of actual bodily suffering. We need a hybrid model that places social change in partnership with medical options rather than pitting them against each other. We need to be suspicious of any approach that turns pain into a metaphor, broadens it into abstraction, avoids it or fails to address it directly and explicitly. Otherwise, “it’s all in society” becomes the new “it’s all in your head,” and people in pain are shut out by the very movement that should be most concerned with helping them.

Human physical suffering is hard to look at and engage with, but when theory fails to do so, it fails some people very hard.

11 thoughts on “consider pain: why the social model of disability fails

  1. I found your post on FIAFI & I completely agree. A lot of disability scholars are advocating for more nuance, just as you critique in your blog post (and as someone with both disabilities that fit well in the vanilla social model as well as the owner of chronic spinal pain, I agree with your assessment). I had more to add…but painbrain just ate the rest of it ❤

  2. I am a scientist who studies chronic pain and I totally get what you say. Pain is real and needs to be dealt with effective medicine and science. We still cannot treat effectively (let alone cure) many chronic pain disorders. This is the reality, denying it doesn’t help anybody. We need to put more resources into finding effective cures.

    It’s not just pain, suffering comes in many ways. People with traumatic brain injury, for example, develop cognitive problems and sensory sensibilities. These are not social construct, but real problems.

  3. Thank you for this. I was disabled with pain for eight years before I finally managed to get,someone to do surgery. They didn’t think the surgery would help, but I am walking again and 80%pain free (down from 100%). In the USA it’s impossibly difficult to get government assistance for pain. It’s just suck it up & learn to live with it. It wasn’t until I became suicidal that anyone took me seriously. 36 doctors are eating their words.

    1. What an awful experience. I’m so sorry you went through that, and happy you are feeling so much better now.

  4. Thank you so much for saying this. I developed rheumatoid arthritis 4 years ago and I feel completely outside current disability narratives. In fact, I actually feel guilty for even thinking I might count as disabled because I can do all the normal able-bodied stuff–I just hurt ALL THE TIME while doing it. So it’s really nice to have someone be this articulate about pain, and point out that pain is its own thing.

    1. I’m sorry you are experiencing this. 😦 But glad you feel a connection here – I truly find it so awful that pain is obscured in disability narratives. It’s just so bizarre and frustrating given how many people suffer from chronic pain. Sending you good energy – thanks for your comment.

  5. I have chronic pain so really identified with this post. I also want a model of disability that accounts for chronic fatigue. The social model tells me that my visual impairment (unconnected to the pain) can be addressed by simply having society provide me with suitable technology and other aides and an environment that is adapted for lack of sight. However, when I was found to be severely visually impaired and so registered blind I was offered an orientation course. One factoid from the course was that the brain has to work extra hard to use all these aides or even just to make the best use of whatever sight or senses remain. And this extra effort is tiring. The expectation that I can act and live like a non-blind person as long as I’m suitably accommodated by society is ludicrous. I’m more tired than the temporarily able-bodied. It tends only to be the young and otherwise healthy blind people who have any chance of assimilating the fatigue of the extra effort they must make sufficiently well to fit in with society as a whole and act as poster children for the social model of visual disability. The rest of us are then misfits who are subtly – or not so subtly – shamed for being so wrong-headed as to be actually restricted by our disabilities. Thanks for a great article.

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