Monday, 9 December 2013


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.


Amy Watson said...

I love this post. I do think it's people's coping mechanisms dealing with a disability to say things like " it's a blessing" and " God gave them to you because you are such loving people". Really? Come on. Just say it sucks. Everyone knows it does, saying stupid things isn't going to change that, it will just get the person or family with the disability mad.

I'm not saying that having CF hasn't made me a better person. Maybe it has. How would you know? Does it make me more aware of mortality and try to do things and travel all over the world instead of waiting for them? Yes it does. Does it make us closer as a family and make me try and seek out my friends and have good relationships with them? Yes it does. But would I be like that anyways? No way to know.

I think that you have to take all the positives from having a disability and use them. Because there are many negatives. But glossing over those doesn't make it less negative, it just makes people not realize that they are there. Which maybe in turn makes people not want to give money for research. Perhaps the negative of diseases should take a lesson from cancer advertising and put things like " I can't have kids" " I can't walk up a flight of stairs" " Every day I fight to breath while you are smoking and killing yourself" to impact people.

Initially when you asked " would I get rid of cf" I would say yes in a second. But I do think having a disability has taught me things that maybe I wouldn't want to lose. But they can come up with a cure anytime…..

( that is the end of my rant)

Anonymous said...

This is a great dining room table discussion........What about all the disabled people who are interviewed that say "I don't let this (whatever disability) define me". Really - can it not define you just as being raised in whatever community, in whatever family, in whatever university. All those things define us so why is there such a need to not let a disability define you. Espically when it has been with you from birth how can it not define who you are. It doesn't have to be a negative thing as you have both already beautifully said.
As we have heard over and over this week - the strength of character comes not in the bitterness of what our lives are but in the ability to forgive. I would think sometimes we have to forgive our bodies the inablility to do what we want it too.
But.....I will still pray for a cure.......

Helen said...

Good discussion everyone, no one mentioned that we (the limping masses) have more compassion for other limping people. Which makes me wonder maybe it doesn't for everyone who has shit that happens? But I feel like I have had a glimpse into just how shitty it could get and that has given me empathy. And cause my disability is recent, I know I wasn't like that before.....however as for any other part of having just sucks like Amy said