Treatment of Disability

How do you know you are disabled? Who decides that? Who do you think should decide that: doctor? social worker? government? teacher? yourself? parent? employer? private insurer? Who ultimately decides that? Can it become a tertiary identity upon external decision? Is the decision internal?

In literature there are two common “models” of disability: social and medical. In reality, disability simply has an interdisciplinary nature. Disability is so damned subjective that it is absolutely in the eye of the beholder. How disability is defined is dependent on the personal opinions and professional attitudes. This is the common element I have found in my research.

So how does disability occur? Where is disability first addressed? For most people, at the doctor’s office. Okay, if you become disabled in childhood, how does the continuum of care continue so they do not feel abandoned? Are there disabilities that require no follow-ups, at all? What happens when the known doctor leaves? Will the new doctor read the ginormous file? Oh, the variables of the unknown.

Interprofessional Collaboration and Continuum of Care are myths in most people’s realities. These concepts that academics work on are very idealist. Do not misunderstand, I fully desire for these concepts to be realized. They are only the reality of certain classes. As much as Canadians will not admit, we are classist. The working class are largely excluded from many of these studies because they cannot afford to participate, let alone take time off work to go see a doctor. I grew up in a reality where doctor visits were only when absolutely necessary and you had to be near dying to call an ambulance (and if you need one then pray that it won’t take three hours to arrive). The other class that ends up excluded are often single, welfare and working moms because they cannot afford to arrange childcare or take the time to work on themselves because their kids are their priority (or they are so far in depression that they cannot even be bothered to take care of themselves). For many, these scenarios are reality and it will not change any time soon.

So, how do people with disability receive treatment? They get basics, maybe end up on welfare because they haven’t any supports. If they are lucky to have a medical plan, they may access services when they can afford them or be allowed to take time off to attend the appointments. Family doctors are hard to come by and difficult to see, so one-off appointments often result in scheduling medication, not addressing any of the issues. Maybe the person is depressed because they cannot engage in life due to not having their medical devices they cannot afford. Or maybe the devices they have are in need of repair and they have no idea where to go. Unfortunately, doctors cannot afford to purchase them either but they can prescribe medications that a patient may or may not be able to afford. Doctors have only a few minutes and will often deny medical conditions and pain because they do not believe the patient. It is a vicious cycle.

So what happens? How does one overcome the treatment of their disability? By becoming assertive, respectful advocates. How do they learn to do that? Some get lucky and are picked up by neat little non-profits that receive government funding. Others have to have extreme information resilience to chase lead after lead like a wall street junkie selling stocks. There is a reason that there is a strange stereotype of angry people with disabilities — waking up knowing you have barriers to overcome just to participate in society with your peers every friggin day is exhausting. Some are able to keep a sense of hope, and some a sense of humour. Resilience is necessary for survival. Feeling worthy of being kind and respectful in advocating for your own well-being and health is empowering. The treatment of disability should be done with great patience and open-mindness so people with disabilities feel safe and able to receive treatment.

Here are some of the articles in the back of my mind for this post:

1. Campbell, F. K. (2009). Medical education and disability studies. Journal of Medical Humanities, 30(4), 221–235.

2. Couser, G. T. (2011). What disability studies has to offer medical education. Journal of Medical Humanities, 32(1), 21–30.

3. Minihan, P. M., Robey, K. L., Long-Bellil, L. M., Graham, C. L., Hahn, J. E., Woodard, L., … & Alliance for Disability in Health Care Education. (2011). Desired educational outcomes of disability-related training for the generalist physician: knowledge, attitudes, and skills. Academic Medicine, 86(9), 1171–1178.