In response to my affirmation of pride yesterday, I received an email. It was a fairly painful read and I've been emailing back and forth throughout the day. In brief, the writer is a person with a disability and questioned the idea of disability pride when life can be so hard and people can be so cruel. I was asked if I didn't, every now and then, simply wish my disability away. I'm going to attempt to answer that question here. For those concerned, I have discussed this with the writer of the email and guaranteed that I would not, in any way, provide identifying information. With that assurance, I was given permission to make reference to our correspondence.
So, have I ever simply wished the disability away? And if I have, how can I claim disability pride?
Yes, of course, I have had moments of such severe frustration that I have wished to be other than I am. That is true of many aspects of myself. When I was younger, I wished away my sexuality. Throughout my life, when treated differently because of my weight, I wished away the pounds. At moments when I wanted to feel handsome, I wished away plain features. And, therefore, of course, I have wished away my disability. I say it this way to ensure that people understand that disability, like every other aspect of my being occasionally brings me pain, and it is natural to wish away pain.
However, it is also important to understand why I wished away my differences, my disability. It took me some while to get this myself, but it was important in my development as a human being and as an adult. Every single time that I wished to be other than who I was, it was because I was dealing with a situation or having a moment where there was real unfairness, where I was experiencing lack of access or lack of opportunity or prejudicial thinking because of ... pick one ... sexuality, weight, disability. It was never the sexuality per se ... but those who would hurt me because of it. It was never the weight per se ... but the unjust judgements that lead to denial of jobs, opportunities, promotions. It is never the disability ... but the lack of access, the restriction of movement, the prejudicial thinking that categorized me differently.
It is a tendency of human nature to hold oneself responsible for the violence visited upon oneself. Victims always wonder if it was what they wore, what they said or how they acted that caused hurt, violation, victimization. It is easier to find fault with self, to punish self, than to stand tall, point at the world and name injustice. The world is so big and so uncaring that it seems that a small, frightened or angry voice can have no effect. Yet in the inner world of self that voice is loud, effective and has power. I gain power back by sitting in judgement of myself - in the world within my skin, I can inflict pain and punishment. In the world outside my skin, I have little power and can inflict only minor consequence, if any at all.
So I hold my disability, no wait my sexuality, no wait my size, responsible. I wish myself different. It's easier than wishing the world different.
Have I ever wished my disability away on days without hate or without barriers or without bigotry.
Have I ever wished to be different when I was with friends, laughing and being ordinary.
So I admit to being human. To wish away moments where discrimination, in whatever form, hurts me.
Can I therefore claim disability pride?
Because pride is a process. It's a day by day experience. It is a combination of will and willingness to face life as it exists, to unburden myself from responsibility that does not belong to me. I am responsible for how I will behave in the face of a store I cannot enter, a job I am unfairly refused. I am not responsible for the physical or the attitudinal barriers that exist. I am responsible for speaking out, for stoking my own fires of protest. I am not responsible for changing a single mind. I control what I can and that's all.
And one thing I control is my will to pride and self acceptance.
I do not give it away or surrender it simply because there are moments, fragments of hours, where I give in.
No, I will not surrender the only thing that makes it all possible.
The belief that who and what I am is worthy of every breath I take.
That belief can only come from pride.
And the occasional cup of tea.
THE GRASS IS ALWAYS GREENER...
Whenever I have wished myself more like everybody else I remind myself that I AM just like everyone else... that my concept that everyone else doesn't have their own complicated story of differences is a MYTH. True not everyone may be disabled, or gay for that matter but everyone has SOMETHING that they wish at one time or another was easier to deal with. Not to mention when I thought that way it was heteronormative and ignored things like non-visible disabilities!
My very first thoughts were like Nathan's - the grass is always greener. But, I liked Erma Bombeck's book title - The Grass Is Always Greener Over The Septic Tank.
I doubt there is a single one of us who has not had a day when they wished they had different skills or attributes or talents or looks or - fill in the blank.
For example, while I don't mind my age, I can't do anything about it. I sometimes wish I was younger or older - but I can't change that even if it presents challenges today - I have to live with it and deal with what I have and who I am.
The world is often unfair and you are so right - we have to speak out when possible to assure the health, safety and well-being of all.
This is a very powerful post - seems like I say that a lot!
You are so right - we do take on the blame for injustice that happens to us. When someone is constantly getting the message that they are not worthy of love and belonging then they begin to believe it and feel shame in who they are. Our society has such a low tolerance for diversity. You identify three ways in which you feel so different from the social "norm" that you feel rejection. The problem with these social attitudes is that we as a society are rejecting and relegating to the margins people who we really need - that would be everyone! We need the contributions of everyone to be really whole and complete and to survive. Unless our society can get to a point where we celebrate diversity and everyone is welcomed I believe we will perish.
Thanks for a thought provoking post once again
I am concerned that this comment may get me some ire. I mean no disrespect as I too have a disability. I also work as service dog trainer & have worked a CIL in the past so I have a little bit of experience on both sides. I too have days when I wish my disability were not there. I cannot drive so most of my wishing has to do with transportation issues. Cause geez louise it'd be better some days to drive!! But in my community I see so much bitterness among others with disabilities. Esp people who came to their disability later in life. I have CP I was born this way and have no other point of reference. But it seems as tho people of the first group seem to want to distance themselves from me and others who were "born this way" if they are some how better and deserve more respect or something because they were once normal. On the other side because my CP seems at least to the outsider to be fairly mild, somehow I can't truly understand the struggle of those with different or "more issues". It seems to me that we can't really have a pride in the same way some of the other groups do. Until we can learn to stop making so many sub groups and see the bigger picture. That said even when I wish my disability away I don't think I'd be who I am with out it. Generally I am quite comfortable being me until someone around me points out what makes me different in a disrespectful way. Thanks for the post! It got me thinking :D
Bravo Dave. I have to let this percolate for a bit. Great thought provoking comments.
Very thought provoking discussion. All my life I have wished that I was someone else, usually someone I have met, or know but not very well. Thinking about this, with the benefit of hindsight and maturity, I think that I was expressing my sense of *It's Not Fair*.
The things that make me feel most like this are not my chronic illness which has a disabling effect on my daily life and gives me a poor prognosis for the future. Nor my Asperger's. Nor my size, weight, appearance in any way.
What makes me wish to be another, is that I was born in and grew up in a rather lacking family. Although not nearly as dysfunctional as some, it did not give me what I needed, what any baby and child would need.
This has left me far more *disabled* than anything physical that I have. Less able to cope with life. And it's invisible, so no-one really knows how hard it is. I know, that is very self-pitying. But it's honest.
Once again I am impressed by the thoughtful comments from readers here. Discussion and, occasionally, disagreement which occur here is always respectful. For that I am grateful. lillytigre, I think you have a real point that needs much more discussion. The divide between those born disabled and those who became disabled can often seem very wide. We are one community but sometimes it seems fragmented and unwelcoming. We have a long way to go, but open dialogue helps. Your voice and perspective is always welcome here.
Lillytiger is absolutely right. There are many divides in the disability community. We'd be a much greater force to be reckoned with if we had better unity and cohesion within. It's no surprise that the outside world doesn't view us as a culture/community/movement the way other groups have been recognized. So many of our own don't even want to claim membership in our community.
Also, while I agree with your sentiments, Dave, and love the pride message, I don't know if I can so simply draw the line between when I do and don't resent my disability, and always blame outside forces. Sometimes I resent my body for lacking the strength to do what I want, or even what I used to be able to do. Sometimes I resent that a simple cold can so easily turn into a major illness for me. Sometimes I resent the fact that my life expectancy is significantly shorter than normal. Sometimes I resent the restrictions on how I can express myself physically. Etcetera. I don't see how I can attribute those things to external barriers and attitudes. There's nothing anyone can do to change these factors; they're just the facts of my disability.
Don't get me wrong--I spend most of my time in the pride camp. I'm greatful to be me. I'm glad that I can offer my unique gifts and contributions to the world. I wouldn't trade the things I've learned, accomplished, experienced, etc. But I have my dark moments of wishing it all away too. And sometimes the causes are outside. Usually the causes are from outside, actually. But sometimes, that's not the case. Just another opinion. :)
I've been trying and failing to put a response to this together.
I don't doubt that every disabled person, whether born with it or acquiring it later in life, has times when they wish it wasn't there. I know I've been there. Even just a few more inches would make some things a lot more convienient. But it's not going to happen, and even if it were possible, I wouldn't do it. Too late. At thirteen, I'd have done ANYTHING. Now? Nope.
It must be such a totally different experience to become disabled as opposed to always having been. Perhaps that's part of the reason so many people assume we all wish our disabilities away; because they can't imagine not wishing one away if they had one. And then some high-profile people have practically made careers of trying to "overcome" their suddenly-acquired disabilities when their time might have been better spent on other activities.
I could hide away from the world and wish for the impossible, or I could get on with my life. I choose the latter.
I have pride in my disability. But I can think of times that I wished not to have certain parts of my disability, not because of societal barriers but rather inherently. For example, my hypersensitive hearing. Sure, it would help if our society didn't seem determined to bombard us all with noise at every opportunity, but I've also had trouble with things like babies crying and such, which are obviously not due to a societal barrier.
But I know it's all part of a mix that includes my favorite traits as well, so I put up with it. And besides, it's not like my life is ruined just because I get overloaded sometimes.
Sorry Dave if this is hijacking your messages but I've met so few people who understand my disability- part of the issue raised, if people understood each other more we'd be more accepting of other people and of ourselves.
Hi Ettina, I too have hyperacusis plus other headaches all due to a head injury. How do you find hte strength to just take it in your stride and just deal with it? I find this very challenging and tend to avoid rather than cope.
NoiseyWorld, not hijacking at all, welcome to the discussion.
Hi Dave, thankyou :) I'm enjoying reading your blog, an intelligent view of life with disability, not enough of that about, although I found you via Ouch! which manages that too :)
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