Imagine you have a permanent disability or illness, just pick one at random (Let's hold the discussion between a disability and illness for a later date). For some of you, just think about your life. Now answer the following questions:
Do you think disability is just a state of mine? If you had the option to spend one year bedridden in exchange for getting rid of your disability, would you? Would your life be better if you weren't disabled? Do you think your disability or illness has made you a better person?
These were questions that were asked at the start of the 'Disability Talk Show' podcast that I listen too (yes I realize that half of my blog posts are just responses from various podcasts). The host of the show (who has albinism) asked his current guest (both who also have a permanent disability) those questions and they laughed awkwardly and answered in the briefest possible way before moving onto other topics. No one, except the host, wanted to discuss the questions in-depth.
So let's get into it.
People don't seem to ever want to discuss the possibility that maybe not having a disability would mean you would have a better life. I understand, it is a complex topic. No one wants to define what a 'good quality of life' means to another person because when we start judging that a person doesn't have a life we think is worth living, we take away their rights as a person. That is everything the disability movement has worked hard to fight. However, we should able to let people talk about how having a disability has made their life better or worse.
Would my life be better if I didn't have CF? My initial reaction is absolutely. No question. It would mean I could have kids, owalk without getting short of breath, and have a longer life expectancy. But then does having a better physical quality of life translates to my life being 'better' as a whole? Quantity doesn't trump quality and I've had a pretty kick ass life so far. Would removing CF mean that I have the same level of psychological, spiritual, or emotional health? I don't know. Maybe I would be at a job I hate with no good friends. Maybe I would be hocked on drugs or gambling. Or maybe I would be just as awesome. It is impossible to tell.
I also find it difficult to answer 'has having CF made me a better person?'. My immediate response is no. I am not in group of people that view their disability as a 'gift' or a 'learning experience'. It sucks and I would give it up in a heartbeat. I would, without hesitation, spend a year bedridden in exchange for getting rid of it for the rest of my life. And I don't think I would become a better or worse person than I am today.
However, if I never had the disability, would I be the same person? No. As much as I don't want to admit it, having a disability has affected
how I see the world so if I never had that lens, I have no idea who I
would be. Would I still have the same drive to experience as much as possible? Would I still have a never quenching thirst to learn new things? Would I see disability and discrimination in the same way? I have no idea.
The only way to be able to answer any of these questions would be if we all got a 'do over' to see how our lives would be different with changes. We don't get to do that so all we can do is wonder 'what if'. I think that some people are uncomfortable talking about how their lives, or a loved ones life, would be better without a disability because it might undermine the life that they do have. It can also be a coping mechanism to say that a person is 'better off' because of their disability. I don't think it is such a bad thing to hypothesis 'what if'. In the same way my life would be easier if I had a million dollars, I know rationally my life would be easier if I didn't have CF. Admitting that doesn't takes anything away from my life or make me feel worse about myself. I'm not distressing over the fact that I don't have a million dollars in the same way that I don't distress over the fact that I have CF.
We, as a society can't have it both ways. We want to find a cure or a reason for every disease and disability without wanting to acknowledge that people's life would be easier without them. If we are honest about how much the disease sucks, then people will understand why finding a way to fix it is important. If we hush over the bad parts, no one will try to make things better because everything is fine. So, can we stop making it a bad thing to admit that having CF (or whatever disability) sucks and that people would better off without it? Doing so doesn't make me or anyone else less of a person.