Throughout history, in most places of the world, disabled people have been the objects of medical professionals, e.g. doctors, psychologists and physiotherapists. Our bodies (including the mind …. because the mind is a part of the body … I know, it’s shocking!) have been observed, ‘fixed’, aborted, killed, operated on and so forth, mostly for the benefit of societies that find it inconvenient to celebrate and respect our bodies. We are told that this is all done for our own health, life quality and opportunities in society. Therefore, we are meant to be thankful and generous. Many of us are raised by messages that medical professionals have a right to stare at us, poke at us, observe us without clothes on and hurt us (in the name of therapy or a treatment). In these circumstances it is hard not become powerless, afraid and incapable of setting boundaries. We can start to internalise the ableism in the health care system, which of course is usually interrelated to sexism, classism and racism, and either develop unconditional trust towards this system or no trust what so ever.
But what is so interesting, but actually more infuriating, is that this extreme interest of medical professionals in disabled bodies, is actually very limiting. As children our disabled bodies seem to be interesting because they might become non-disabled or less disabled. Everyone and their mothers want to ‘have a go’ at ‘fixing’ our assumed brokenness and they put a lot of effort in it (often with the cost of life long trauma for disabled people). If they ‘succeed’ they become heroes in the medical world and they take photos of our bodies and show them of at conferences or in medical journals. But when they don’t succeed at all or enough we stop being interesting. Because there is no benefit for them, anymore. In some cases we, as disabled people, become relieved because the pressure and the pain decreases. But sometimes this lack of interest turns into maltreatment. Some of us might experience bodily changes in adulthood and want it checked out but nobody is interested and nothing is done. Sometimes we become sick but nobody cares because we are ‘disabled anyway’. In other cases we might be going through changes in our lives or have accidents and injuries but we are just left to deal with it, because ‘there is no cure anyway’. Our bodies are seen as broken and therefore it is not worth it to ensure their wellbeing or healing.
Why am I writing about this now? As a disability activist and a person who, alongside other disabled women, runs a feminist disability movement, creates saver spaces and run workshops for the empowerment of disabled women, I’m constantly hearing stories of dismissed (female) disabled bodies in the health care system. Yes, of course I hear stories of brilliant doctors and therapists, but unfortunately not often enough. I hear of women who go to psychologists who don’t listen to them and decide all their troubles are because of their disabilities (but not oppression, loosing a job, experiencing violence or a break up). I hear of women who see gynaecologists who send them straight home because they assume they are not having sex and therefore there is no need of a check up. I hear of women in excruciating pain who are assumed to be imagining it because it is not visible. I myself, have over and over again, gone to doctors because of longterm nausea or fever and nobody sees it as anything special (until a few weeks later when I come in with a massive infection or with a kidney which has become double in size). A friend of mine recently contacted a doctor because of changes in their impairment and after waiting for two weeks the doctor replied with an e-mail saying something like; ‘I am really busy with paperwork, I don’t know anything about this and have never heard of anything like this, nor do I know any other doctor who does. Goodbye.’ There were no suggestions of other professionals or an offer to get it checked out. Nothing.
This is happening while we know that disabled women rate their health lower then disabled men and nondisabled women. This is happening while we know that the premature death rate of disabled people is much higher than for nondisabled people. This is happening while we know that diseases like cancer are being diagnosed much later than for nondisabled people. What happens is that disabled people stop seeing the point in seeking health care or become too afraid or anxious to even think about it. It also makes it very difficult, while working with and for disabled women, to suggest that they get checked out or see someone for help. Because doing so can be dehumanizing and traumatizing in itself and there is a great responsibility in advising someone to possibly go through that.
This has to stop. Disabled people do not exist for health care professionals as objects of their success stories or medical career. Our bodies do not exist only when they can be fixed or cured. Our health is not only important when it is beneficial or interesting to others. Because if it is, and it often is, our lives are in danger. Our disabled bodies exist as they are. We exist for ourselves. Our bodies are ours to own and claim and therefore we have the right to ask for medical help and treatment when needed and to be taken seriously. All. The. Time.
The Wheeling of Shame and Resistance 