Disability and Quality of Life

A few weeks ago, I read a post on gratitude for people with disabilities. It made me think: are disabled people naturally presumed to be unhappy? And if so, do we have an obligation to put up a shiny happy face to make the world know we’re not unhappy? I think indeed we are often thought of as necessarily unhappy. While it would be great if we could show some gratitude, for ourselves and others, this is unrelated to disability. Everyone can be a pain in the ass when they’re constantly grumpy.

I am a relatively unhappy and a significantly disabled person. I do not feel these two necessarily go together. And what if they do? I sometimes do feel crappy because of frustrations related to my disability. Does this make me a pitiful crip? I don’t think so.

Let’s face it: life throws challenges at all of us. It’s not like living with a disability entitles us to be grumpy all the time. On the other hand, we are not required to put up the shiny face at all times either just to show the world that our disability is not a harrowing fate.

I remember when I was aroudn fifteen participating in a preemie folloow-up study. Part of it involved a quality-of-life questionnaire. I was honest that my quality of life was pretty crap, but made a big deal out of making clear this was not due to my disability. After all, I didn’t want the doctors to think that blindness is somemthing worse than death, and, let’s be real, neonatal specialists do use quality of life to base ethical decisions about life or death of future preemies on.

Are we, as disabled people, responsible for making the world believe that disability is not a big deal? I don’t think so. To give an example, when in like 2011 two deafblind twins were euthanized in Belgium, the National Federation of the Blind (U.S) responded by playing the Helen Keller card. See, she was a major achiever and was deafblind, so deafblindness is no reason to have a miserable life. Maybe so, and I agree that a disability in itself is not necessarily a reason for suicide, assisted or not. However, the NFB did not know the specific circcumstances of these people, and neither do I. Both sides of the euthanasia debate made the case of the deafblind twins about deafblindness. What if deafblindness was only used as an excuse for the twins to get assisted suicide, while the real reason was subjective suffering that may or may not have been related to their disability?

Since euthanasia was legalized in the Netherlands in the early 2000s, the definition of unbearable suffering, which is required for euthanasia, has undergone significant inflation. Formerly, euthanasia and assisted suicide were only lejal on terminal patients, while just today, a man who euthanized his aging but non-disabled wife was found guilty but not sentenced. Maybe there’s a difference in that the man in today’s case was not a doctor, but people constantly make it about the wife’s non-disabled status. Let me make one point: if you allow euthanasia or assisted suicide but only on those with a disability, that’s discrimination. It’s not like non-disabled people can’t suffer. As sort of an inverted argument, are non-disabled people required to live in misery just because they don’t have a disability?

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