More On the Institutional and the Personal

This is a topic I feel like I harp on a lot, and there’s a reason for it; despite constant harping, people still don’t seem to get it. When we’re talking about social justice, and activism, and how to effect change, one of the most critical conversations we need to have is one about the origins of oppression and the experience of marginalization. I firmly believe that oppression is institutional in nature, that it is created through social attitudes and beliefs and reinforced in law, culture, and environment. Others do not share this belief and seem to think that oppression is a personal problem.

Schisms in theory may seem purely academic in nature, and it’s true that not all of us have the leisure time to debate them, but they are also very important. Because beliefs about the origins of oppression play directly into the way that people confront, combat, and attempt to dismantle oppression. People who view oppression as a personal problem often actively work against those of us who view it as a social one, although they claim to be working in solidarity with us on common causes. I do not view someone who thinks oppression is a personal problem as someone who is working in solidarity with me.

The most striking example of this probably comes up in the context of disability, where the medical and the social model really neatly highlight the difference in the two views. Under the medical model widely used in the United States, disability is the result of an impairment experienced by an individual that limits that individual’s ability to engage with the surrounding world. Under this model, a wheelchair user is impaired in a way that prevents walking, and thus limits that person’s activity levels.

In the social model, people are impaired by society, and their disabilities are not personal problems. That same wheelchair user doesn’t have a problem because she cannot walk, or cannot walk reliably, or cannot stand for long periods of time, or for whatever reason she uses a wheelchair for mobility. She has a problem because the world she navigates is not, for the most part, designed to accommodate wheelchairs. Because when she heads to the office, she has to magically mount a flight of stairs. When she visits her cousin’s family, none of the sidewalks have curb cuts. These are not personal, but institutional, problems.

Both models have benefits and drawbacks; I personally incorporate elements of both into the way I view disability and talk about disability. I think that the social model has a lot to offer in terms of highlighting the importance of accessibility and the need to build inclusive spaces with room for as many bodies and minds as possible. I also think that the medical model has value because some impairments are personal, rather than social. There are no accommodations that would help me with my mental illnesses, for example; there is nothing that anyone can do to address them, beyond creating a world where I could be safely out, could receive treatment without judgment. Ultimately, there are some battles I must fight alone.

The embrace of the medical model to the exclusion of the social model, though, results in a lot of very ugly situations. A favourite example comes up for me in the media a lot. Some newspaper will have a profile of a ‘brave’ disabled person in an inaccessible house who was saved by some nice nondisabled people. Maybe it’s members of a basketball team who rotate responsibilities and carry a disabled child to his bed at night, up the flight of stairs the child’s parents cannot climb. Maybe it’s the local service organization that puts a ramp on a veteran’s house so she can leave by the front door.

These articles are often warmly received by nondisabled people. And it’s no wonder, because they highlight the idea that disability is a personal responsibility and problem. Both of these issues could be resolved by universal design and mandating accessibility for homes; they are not the result of some fundamental problem with the disabled person, but with the built environment. This also came up for me in the bioethics panel paper on the Ashley X case, where the parent of a disabled child was framing disability as the problem that needed to be fixed, instead of discussing the fact that the barriers she was presenting as problems were actually social ones. That, for example, there’s no reason a wheelchair user cannot go to the beach, if it is accessible and designed with wheelchair users in mind.

The consequence of treating disability as a personal problem is that any attempts to tackle institutional ableism, to change the way society approaches disability, meet with opposition and disdain. Many disabled people themselves subscribe to the idea that their disabilities are their problem and they just need to try harder or suck it down or work more. Those people tend to undermine the work that others are doing, even if they are not acting as spokespeople on behalf of the whole disabled community, because nondisabled people can always turn to them and use them as the justification for denying access, for treating disability like a personal problem.

Disability is not the only place where this happens; I see it with gender, race, class, and so many other oppressions, a neat personalisation of political issues that becomes slippery and impossible to fight. Because if you try to talk about the structural underpinnings, you’re just ‘making excuses,’ and if you try to confront institutionalised -isms, you’re told it’s all your fault. Your responsibility. With friends like these…

The question for me is not how we can change as individuals, but how we can change as a society. Is identifying the needs and interests and concerns of groups and determining which obstacles society creates, so that we can tackle those problems. Every time I see, say, people being provided with helpful ‘tips’ on how to deal with something that is fundamentally an institutional problem and barrier, I want to hit something very hard with an extremely moldy cupcake. The problem here is not individual, and it is not anything that an individual can fix. It is institutional, which makes it something we must fix together.