*Standard disclaimer: The "you" in the following is no one single person, it is a figurative "you" based on a lifetime of dealing with "yous". If you are a regular commenter on this blog, it certainly isn't "you." None of "you" have done anything to fit this profile.
Can I just say this once and for all and never have to say it again? Could that ever be possible?
If you are going to call me remarkable, amazing, inspiring, or whatever other adjectives you want to use to put me on a pedestal...it better not be because I am disabled, or because I partner with someone who is disabled. It better be because I have won an Olympic Gold Medal or a Nobel Peace Prize or a Pulitzer or because I have brokered a treaty between waring nations or because I can tie a cherry stem with my tongue or because I have actually DONE something remarkable. And "coping" with disability DOES NOT COUNT. I didn't do anything to be disabled, I was given this gift.
And if you are going to feel sorry for me or feel pity or whatnot, it better be because my dog died or my house burnt down or my family member died. It better not be because I am disabled or because D is disabled. Or because we 'cope' or because we deal with a bunch of health shit. This is WHO WE ARE. We didn't do anything to be disabled, we were given this gift.
The inspire or pity paradigm serves only one purpose, to make us "other" and unequal to you. Either as lower on the totem pole (pity) or as on some unreachable pedestal (inspirational.) Do you know what this is all about? Do you know why you do this? It isn't about us. It has nothing to do with us. It is about you. Your fears of sickness and mortality. Your fears of your own inadequacy. Your fears about losing your own power. Your fears that you can't handle it. It being whatever you are having trouble handling. Do not pity us and think you are being understanding. Do not feel inspired by us and think you are being complimentary. In both cases, you are seeing us as less than human and as unequal to you.
And please, please, please, oh pretty please stop talking cure to us as if it is your merry way to be uplifting and to give us "hope." Guess what? I don't want to be cured. D doesn't want to be cured. I mean, sure ...in many ways it would make life much more convenient. In some instances we seek medical intervention to improve our physical functioning and health. And sometimes it crosses our minds in the same way winning the lottery, or driving in the Indy 500 or climbing Mt. Everest, or being a Victoria's Secret Model or whatever the silly pipe dream is that might cross yours. It is not the be all and end all of our lives. It is not the goal we strive for. Your talk of cure is also more about you than us. You want us to be more like you. Like a person you can be comfortable with. Like a person you don't have to consider when thinking about the rules of fair play. Like a person who had a deficit, a problem and now it is conveniently solved. Your issues around dignity, the kind of dignity that apparently you earn by going to the bathroom in the right way or being able to walk in the right way, of being too "proud" to be "a burden" --those are your definitions--not ours. We have a different idea of what dignity is. It has more to do with honesty, integrity, doing your best, being a loving person, sharing with others, than how we wipe our butts or get through a doorway we can't see.
When I think about what my life would be like if I were not disabled, it is very hard to even grasp the concept. And I'll tell you what it feels like when I do. It feels like loss. It feels like something good and intriguing and rewarding would be gone. If I think of myself as not disabled, not ever having been disabled...would I be like you? The able bodied person calling me pitiful or inspirational to make himself feel better? The person who is all into superficiality and shallowness and is so irritatingly uncreative and unresourceful? Would I not know the true value of life? Would I go blissfully on my way thinking I was immortal and invincible? Would I go through life blatantly denying the fact that I don't have control over everything?
And if we were all cured tomorrow, if there were no disabled people anymore, it feels like a loss to the world. No one would have to think about diversity. Sure there is race and cultural diversity, but they don't require people to necessarily reevaluate everything they know about the value of life and what it means. Who should live and who should die. Or how far we are willing to sacrifice ourselves to offer someone else a chance at a decent life. Where would the innovation be? Where would the resourcefulness go? What would happen in a world with no need for creative solutions or alternative methods or new inventions? Sure it would be there to an extent, but not as deeply rooted as it is now in a world where 5 out of 6 people will experience disability in their lifetime. The world needs us. They are just in denial. I think it would be kind of cool to be cured for a week, just for the novelty of the experience. But, no, I don't want to be cured. I don't know that D does either particularly, although he might grab at being pain-free.
Like everything else in life, disability has two sides to it. The one where it is a hassle, and the one where it is a gift. Even winning the lottery is a hassle if you've lost your ability to know who your friends are because many of them are clamoring for your money. When you are disabled, it is relatively easy to tell who your friends are. Instead of thinking of me or D or other disabled people when you need to feel fortunate and grateful about your life, try thinking about some people who might really need your help. D and I are fine. We are not here to service your self concept about your own lot in life. Instead, you might want to think of people who really could use your help and some of your good fortune. Genocide victims in Darfur. Child-slave labor in the third world. Homeless single mothers and their children in battered women's shelters. Disabled inmates who are trapped in (many times very abusive) residential facilities.
And if you really want to help us, then treat us as humans who are your equals. As people who can give help as well as receive. Get to know us instead of popping around during the "hospitalizations" or the times when we are lugging around medical equipment. Befriend us full-time, not just when it makes you feel better about yourself.
Being disabled sucks sometimes, sure. (Mostly due to external social justice/health care factors rather than the physical impairment itself.) But it is part of who I am. It isn't everything. It isn't the most important thing, most of the time. But it isn't invisible or some burden that I drag around like a ball and chain just praying for an opportunity to chop off. Believe it or not, I don't hate my eyes, or my ears. D doesn't curse his legs. My ears have big silver BTE hearing aids coming out of them. My eyes are asymmetrical and scarred after so many surgeries. My face is puffy from kidney dysfunction. D's legs are atrophied and often swollen and well, one is in fact missing. We do not feel ugly. We do not feel shameful. We do not feel like those parts should be hidden. This is what it means to be human, finding your soul within and beyond your body. Within and beyond these physical parts in all of their stages of wear and tear and disrepair. We have an affection for them and the rich opportunities they've brought us. They are part of us, as weird as it may sound--a part that we love.