In the Blog
The Myth of Informed Consent
One thing that you find out pretty quickly when you have a disability is that the moment that label is applied to you, you never really get to own or control your body again. There are lots of different ways that doctors can control your body when you have a disability. For example, they can place a hold on you which declares you a danger to yourself and others and that means that you are basically incarcerated in a hospital for 72 hours which theoretically can only be extended so many times, but can end up resulting in far longer hospital stays. They can put you on a community treatment order where you are made to comply with a doctor’s treatment plan for you such as attending regular ECT treatments as a condition of being able to remain in the community. Although both of these examples primarily apply to mental health, don’t be fooled into thinking that those with physical or cognitive disabilities are any better off.
Theoretically, informed consent is supposed to allow patients to be informed of exactly what procedure will be done to them, how the procedure works (with as much detail as the patient is comfortable with), provide the patient with an opportunity to ask any questions that they might have about the procedure, including benefits, drawbacks and other options and allow patients the opportunity to refuse to consent to a procedure they don’t feel is necessary or beneficial. However, I think that true informed consent is rarely, if ever, realized. There are too many other factors that intervene.
There is a huge power imbalance between doctors and disabled people. It goes beyond the usual social view of doctors as experts. As disabled people we are pretty beholden to doctors. After all, they are the gatekeepers to things like disability supports and benefits. They are the ones who control many aspects of our lives, like the accommodations we get in school, whether we are placed on holds or community treatment orders. There is the danger that if we do not agree to do all of the things that our doctors tell us then we won’t be seen as legitimately sick or disabled. If we were truly disabled then we would obviously jump at any chance at improvement, and if we don’t then maybe we have really been faking having a disability all along.
Also, hand in hand with this is the idea of what makes a “good” disabled person. A “good” disabled person is one who never complains, who never questions, and does it all with a smile on hir face. “Good” disabled people are the ones who we see on TV or read about in books. Actually, I love Blind Rage an Open Letter to Helen Keller (It’s in an academic journal so try to access it through your local library if you don’t have access through a school, but it’s well worth the read) so much because it completely turns the idea of a “good” disabled person on its head. However, coupled with the idea of needing to meet whatever demands doctors make of us, there is also the desire to be the “good” disabled person. The one who accepts whatever the world has to offer with a smile and with grace. The one who doesn’t let the things go on in the world get hir down.
In the end though, it is about how disability is seen. Disability is abnormal. We need to fix it. If we do the treatments that doctors recommend it will make us more “normal.” We’ll be better able to blend in with non-disabled people. It’s the allure behind so many things in the disability world. It’s why we’re given hearing aids that blend into your skin and hair, why there is so much of a focus on rehab and physical therapy, why we want to teach Deaf people to speak and lip read, and why we push disabled people into treatments, procedures and surgeries that may not be effective, or may have painful and risky consequences for the promise of appearing more “normal.” When you can choose to be like everyone else, why would you choose to stay in a “broken,” “defective” body? Why would you choose to continue to struggle in a world without support or resources if we can do things that might make you be able to gain more functioning than you had. Though whose definition of functioning is used is definitely up for debate.
It isn’t to say that all treatments, surgeries, procedures etc. are unnecessary and wrong. Sometimes there are medically necessary and helpful procedures, and often times we are able to prevent deaths through medical intervention now. Disabled people however are disproportionately targeted for procedures that show only mild promise of benefit, or that provide benefit only to an able-bodied world such as procedures or treatments that work to ease the appearance of some disabilities. I firmly believe that every person has the absolute right to make the decision that is best for their body and their life regardless of what that decision is. However, I also feel that without being aware of everything that goes into these decisions, consent is an illusion. I think it is important to shed light on the hidden reason for why some of these things might be seen as so “necessary” and to understand the factors that are truly at play before people can realistically say that they are informed.