*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.
uhm...this is gonna sound weird since you don't know me at all, and i've just been lurking, lurking, lurking...
but i'd like to give you a great big smoochie kiss for this. = )
great post!
Posted by: indiemama | January 25, 2008 at 01:50 AM
So last night I was watching one of Cole's murder mystery shows and they thought maybe the mother killed the teenaged daughter, because daughter had just survived a car accident and would NEVER WALK AGAIN! Over and over people kept positing that this was a life NOT WORTH LIVING.
No wonder the idiots are so hard to extinguish with PR like that.
Posted by: shannon | January 25, 2008 at 09:02 AM
hey lisa, you should direct Dan Wilkins at The Nth Degree to this post. I bet he could make several catchy t-shirts out of it. He has a fun sens of humor and makes all kinds of disability culture and empowerment shirts. and he's a quad. :)
www.thenthdegree.com
Posted by: marisa | January 25, 2008 at 04:30 PM
Wow, someone sure pist you off, remind me again, why should you care??? Cause it sure isn't worth any of your time or energy. Sven
Posted by: | January 25, 2008 at 06:34 PM
Hmmmm....Sven. I know who you are. You give yourself away not so much by the name but by the way you spell pist.
I'll tell you later why this pissed me off especially today. It wasn't the random usual well-intentioned but unenlightened person saying this stuff, it was someone who should know better and who kinda wouldn't let it go.
I'm sorry. I think I fell asleep really early and missed your call.
Posted by: Lisa | January 25, 2008 at 07:19 PM
I love your blog because it always makes me think. Thanks.
Posted by: vanessa steck | January 26, 2008 at 10:07 AM
You always amaze me with what a great, thoughtful mother you are. A mother of TWINS. I know it's not winning the Nobel prize, but you're a model I use when making parenting decisions myself.
Uh, it occurs to me this has nothing to do with your post, but I've been meaning to say that for a while.
Posted by: Alanna | January 26, 2008 at 10:27 AM
Yeah so many times when I say I am legally blind I get the reply that they will fix that someday.
Oh joy I feel maybe I should go hide in a closet until then.
I have so many similar experiences it is nice to know I am not alone.
I have thought of starting a stupid list of things people say and do.
I don't write about it too often but your writing helps comfort
Thanks
Posted by: Angela | January 26, 2008 at 09:46 PM
I have to admit that I do think of you as remarkable, amazing, inspiring... because you are raising twins and you can still form complete sentences. I only have one four month old baby and I can barely cope with him! You have two, and you've been doing it for three years! It boggles the mind.
Posted by: Skye | January 27, 2008 at 01:11 PM
Yeah, I admire you too. I don't think it's for any icky reasons. But you're tenacious, and I really admire that in people. (I think I am tenacious too, and it's a thing I like about myself.)
I'd take a cure for RA. Although it has given me some good things, I'd love to be able to take long walks again and have more stamina. I would not, however, take a cure until it had been around for awhile and shown not to kill people. I'm not that desperate. So, I guess my main point is the same as yours, I'm also fine the way things are.
Posted by: cherylc | January 28, 2008 at 10:35 AM
Oh Lisa..you are fucking amazing and I **heart** you!!!
xx
Posted by: Debbie in the UK | January 29, 2008 at 01:12 PM
I started working in a group home a few months ago with three awesome guys--one with a wicked sense of humor, one who's just like a grumpy old man at 22, and one who is really, honestly the salt of the earth--and sometime in the first month stopped feeling sorry for them. I didn't realize I had been feeling sorry for them until I stopped. Now they just ARE. Yeah, they need help with hygiene and with making healthy choices. But they are members of my community, and in a way that transcends our staff person/client relationship, they are part of my family. I get just as much from them as they get from me, maybe more. Especially that last guy...I swear there's more energy in one of his hugs than those of anyone I know (and NOT because he's SPECIALLY BLESSED as a disabled person, but because he's just amazing as a human being). One night I was sitting with said guy as he was getting ready to sleep. He's really social and hates to be alone, and he was having a hard time when he first moved into his new house sleeping all night. As I was sitting with him I said to him, even though I'm pretty sure he couldn't understand me, "X, I like you exactly the way you are. They only reason I'd wish you weren't disabled [he has the mental age of 18 months] is so that you could have a wife to put your arms around and talk with until dawn." I guess I realized then that he was just him, X, and it was about me projecting what I thought he needed based on what I feel I need in my life.
I am so sorry this is so long. It was just to say that I am starting to get it, I am learning. Thank you for being here and writing.
Posted by: sster | January 29, 2008 at 09:00 PM
Lisa- that was such an inspiring post...ok just being sarcastic here. Seriously - well said. I don't love your blog because of your disability I love it because you are so damn smart and have given so much good information here that helps me practically and mentally all the time. So I think it's your ability - being so smart and a great writer and so open that is the draw for me.
Well said. I hate the pity party crap too. I am not disabled but because Ellie is, we become "other" by default and our lives are "forever compromised, oh how sad, blah blah blah" I sooo hate that BS and you are so right it's just a petty way for those around me to put themselves above me so that they feel better about their sorry selves. In a way I think that Ellie's disability has separated the wheat from the shaft in terms of friendship. So great post!
Posted by: Kathryn | January 31, 2008 at 08:20 AM
I HATE pity! You said it well. When people bring up my arthritis, they always say stuff they think is supposed to make me feel better ie. "I have arthritis in my elbow; my legs hurts" etc. Don't do this.
Posted by: Gina | February 01, 2008 at 09:02 AM
Well, I think ANYONE who is raising twins is remarkable, whether they have their full facilities or not.
You do not SOUND disabled! And you are truly lovely to look at.
Lantana
Posted by: Lantana | February 02, 2008 at 03:41 PM
I just read this from the Disability Carnival. It demonstrates just how much further society needs to go in recognizing ALL people as being ok exactly as we are.
Posted by: David McDonald | February 14, 2008 at 12:54 PM
This is an excellent, thought-provoking post. I love what you want on your T-shirt. More than this, your words on pity and inspiration are perfect! I have tried several times recently to articulate "the pity/inspiration paradigm" as you put it to my extreme frustration--you hit the nail right on the head.
Posted by: terri | February 16, 2008 at 08:36 AM
Lisa, this post absolutely rocks! :)
Posted by: Deaf Mom | February 20, 2008 at 05:23 PM