Not Searching for a Cure

Contrary to what may people believe, many disabled people do not want a cure.

In fact, many disabled people actively resist funding going to cure their disabilities. If you are not disabled, this may be really difficult to understand. If you aren’t disabled, imagine for a moment that you live in poverty, that you cannot get a job even though you are qualified and you want one because no one will hire you, that most public spaces and almost all private homes are inaccessible to you and that every year millions of dollars are raised and spent so that you can be cured while you get little or no support to live you life and to combat disablism.

If you are disabled, you know probably  this situation very well. You also know how it feels to constantly have your entire existence undermined and devalued by the pursuit to ensure that people like you will not exist.

However, disability will always exist and is an inevitable part of life. So why spend billions of dollars trying to eradicate it when the project to accommodate disabled people and help provide people with adequate standards of living is far less expensive and far more humane.

This is not to say that disabled people should not be able to access medical care.

 

Medicalization and the Medical Model

Medicalization, is defined by Cathrine Kohler Riessman as:

The term medicalization refers to two interrelated processes. First, certain behaviours or conditions are given medical meaning – that is, defined in terms of health and illness. Second, medical practice becomes a vehicle for eliminating or controlling problematic experiences that are defined as deviant, for the purpose of securing adherence to social norms. Medicalization can occur on various levels: conceptually, when a medical vocabulary is used to define a problem; institutionally, when physicians legitimate a programme or a problem; or on the level of doctor-patient interaction, when actual diagnosis of a problem occurs.

In the disability context it means that our identities are medicalized everything that we are or will be is seen through the medical scope. Under the medical model or approach to disability, we become our disabilities and our disabilities are seen only as negative or bad because that is how the medical profession sees them.

This plays out in a lot of different ways in our daily lives. Some of them are:

Biased, Discriminatory Medical Care: Our entire medical treatment is filtered through our diagnoses. This is problematic because doctors often attribute all of our symptoms to our disability and do not necessarily investigate fully or properly. This means someone could go into the doctor complaining of a serious problem and essentially be patted on their head and sent off because this is a symptom or progression of their disability when it could be something else entirely. This means that when many disabled people seek out medical care they do not get as thorough treatment as non-disabled people. This is especially the case when it comes to psychiatrized people and psych survivors as their physical symptoms may be disregarded and attributed to ‘psychosis’ when they require treatment.

Similarly, when a fat person goes to the doctor with knee pain, the doctor will likely tell the person to lose weight. But if a thin person goes to the same doctor with knee pain, they doctor will likely examine them and do tests. Both people could have the same condition and the same amount of pain but because fat people are medicalized, they are not treated with respect and their complaints are not investigates.

Perception of Low Quality of Life: As disabilities are defined solely as bad by medicine, our disabilities are counted only as negatives in our lives – which isn’t the case for many disabled people. Further, it has been found that doctors routinely value our quality of life lower than disabled people do. The most dramatic illustration of this is when disabled people try to seek medical treatment and are denied it because doctors view them as being ‘better off dead’. There was at least one case where a disabled person had to fight to get life saving treatment because the doctors felt that they would be doing him a disservice if he continued to live.

We Are Defined as Dependent Patients: Disabled people are not seen as agents of their bodies, rather as patients who have things done to them and who are dependent on doctors to cure or treat us. This is not what disabled people’s lives are actually like.

The reality is that whatever medical diagnoses a disabled person may or may not have tells you nothing about who they are. It is a common pet-peeve among many visibility disabled people that non-disabled people are constantly asking “what do you have” or “what is wrong with you” (the second being a slightly more offensive version of the first). If you ask someone what they “have” and they tell you that they have CP, spinal muscular atrophy, fibromialgia, schizophrenia or lupus, what does that tell you about what they think about the world? What does it tell you about what kind of music they like or what they do with their free time? What does it tell you about who they are in love with or what they hope for the future? It tells you nothing about who they are.

Disability Is Individualized: the medical model of disability individualizes disability, paints it as an individual tragedy, and does not account for social barriers. Western medicine positions disability between the doctor and the patient (disabled person) where the patient has the disability and the doctor has the tools to ‘cure’ the patient. Where the doctor is unable to ‘cure’ the patient, the doctor then treats the disability. If treatment is unsuccessful (in the doctor’s view of success) the doctor then fills out forms to allow the patient to seek income support if the patient is physically or mentally unable to find and keep employment.

Doctors Have Power Over Our Daily Lives: Doctors are asked to provide medical information that is translated into non-medical resources (such as housing, food and transportation). As doctors are not necessarily skilled in the delivery of these services, they can misrepresent the needs of disabled people. Doctors are often lacking a true understanding of poverty because they are rich and they may not work to ensure their patients get access to the resources they deserve because they do not understand what many disabled people need and how badly they need it. Just one example of this is that some doctors refuse to fill out any forms for people on social assistance even if they are paid to do it and even if their patients could get hundreds of dollars a month extra to live off of.

Click here for more on ‘The Cure’.