To Be Human Is NOT To Be Powerful

Yesterday's post Things People Say  provoked a bit of discussion in the comments and particularly over on Facebook that I thought we should hash out a bit more. Since I've been feeling as sere and uninspired of late as the California landscape, I thank you for helping to kick me in the fanny and feel a bit of pep in my step.

I am writing a book right now and have been for the last decade or more about the last eighteen years of my life. The book is, of course, about Sophie, about disability, about identity, about what it means to be human, about how we do it, how I do it and about how all these things sort of intersect. I can't attest to the quality of the book-in-progress, but one of the things I do as a writer, one of the things that I find necessary to my survival (a bit of hyperbole, but maybe not) is to write down my observations, even as they happen and to wrest some sort of meaning from my experiences through words. Words equal blood, to tell you the truth. Drip. I strive to be non-judgmental in the telling, sometimes, using words to convey emotion. Sometimes I succeeed, I think, and other times I don't. I'm not sure what happened with the post yesterday, but I do know that it struck a chord and that some people were offended for the woman I called out and others were offended by the woman I called out.

Here's the thing. Things People Say is a "thing" I use throughout my book to convey everyday experiences raising a child with severe disabilities. I try not to write about my own responses to these things but rather to tell them like they are and leave the interpretation up to the reader. That being said, I don't always do a good job, and yesterday's post was probably a good example of my being half-assed and not just coming right out and explaining things.

Beyond my hatred of the use of the word "retarded," I was struck yesterday by the irony of a physically disabled woman putting down a cognitively disabled woman. Sophie, as you remember was standing right with me. Let me say that this is not unusual. The disabled as a population are not some sort of tribe, always recognizing their kin or even backing one another up. Did you know that there are great rifts, even, between those who are disabled themselves and those who parent the disabled? I'd venture to say -- with a pretty certain authority -- that the cognitively disabled are at the bottom of the caste system, if we can stand to be non-politically correct, and while I don't want to assign rankings to discriminated peoples (all the isms), I feel pretty strongly that with few exceptions, to be "retarded" or cognitively disabled is a fate worse than death for many in our culture. And contrary to the increased visibility that others on the fringe of society are earning (not without enormous and grotesque struggle), the cognitively disabled are lagging behind. I'd venture to say that they have no voice -- quite literally -- other than mine. Ours.

I wince when I hear those in wheelchairs object to people condescending to them, not because they are in a wheelchair but because they are taken to be "retarded." The retarded are, in effect, even less than the physically disabled, relegated to an inferior position.

We live in a culture that looks on disability -- both physical and cognitive -- as something "less than." Those of us who walk are "grateful" to not be in a wheelchair.  The formerly abled who through accident become disabled often go through great trauma, feel suicidal, would rather die than lose their "abilities." Pregnant women use invasive medical procedures to determine whether their unborn children are "healthy," and when they discover any abnormality, may decide to abort on the basis of "the difficult life ahead for the child."

This is the way it is. I am passing no judgement, am a firm believer in a woman's right to choose abortion, no matter the reason.

I wonder, though, if disability is more a social construct than otherwise.

We live in a culture that defines people -- their worth and sometimes their very existence -- by their intelligence.

I'm not talking about being inspired by those with disabilities or by those of us who care for individuals with disabilities.

I could never do what you do. I don't know how you do it. 

I'm talking about truly living in concert, without pity or judgement, with those who are different than us -- beyond color, gender or sexuality and "ability."

There is a lack of synchronicity between our society and people with disabilities. A society that honours only the powerful, the clever, and the winners necessarily belittles the weak. It is as if to say: to be human is to be powerful.

 Those who see the heart only as a place of weakness will be fearful of their own hearts. For them, the heart is a place of pain and anguish, of chaos and of transitory emotions. So they reject those who live essentially by their hearts, who cannot develop the same intellectual and rational capacities as others.

Jean Vanier, Becoming Human 

Things People Say

After driving through the carwash with a mesmerized Sophie, our outing of late that relieves my guilt at not providing enough stimulation, I pulled into a local small restaurant to pick up some food for the workers who are turning my yard into a drought-tolerant paradise. I intended to leave Sophie in the car while I ordered at the outside counter, within eye-shot, in a handicapped space. The spot was filled, though, with a large, red SUV so I pulled into another spot around the corner and took Sophie out. We made our way awkwardly up to the counter (Sophie isn't walking very well these days which I'm attributing to drug withdrawals, but who the hell knows?), and because the handicapped spot is right next to the counter, I saw that there was no indication a handicapped person was in fact using it. In other words, there was no license plate or placard hanging from the rear-view mirror. I waited in a long line, keeping Sophie from sitting on the pavement, one eye on the spot, in hopes that I might call out the person who was using it without a placard. I could see inside the small restaurant, how every table was full but that there were no visible indications of disability. This doesn't mean anything. When I finally got to the window to order, I told the cashier that someone was parked in the handicapped spot without a placard, that I had a handicapped daughter and had to park a distance away, that I hoped he could find the person who had parked there and perhaps let them know. He smiled incomprehensibly at me and told me that he'd let his manager know. I ordered. He did not make any attempt to let his manager know and continued to take orders.

I girded my loins.

Excuse me, I asked a couple dipping curly fries into a white cup of ketchup, is that your red Honda in the handicapped spot?

I asked another couple with two small children the same thing.

I asked a family identically clothed in USC red and gold tee-shirts as well. I tried not to let their choice of college sport regalia affect me, pulled my loincloth a bit tighter.

Excuse me, is that your red Honda in the handicapped spot?

The man rose up and said, Yes, that's mine, and he turned to his wife, and she said, Oh! We forgot to put our placard up! 

And I said, Oh, thank you because I was going to be so upset if it was just someone using the spot! 

And she said, I always forget! I'm physically handicapped, but sometimes I'm retarded, too!















This is, of course, an equal opportunity post.

Things People Say: Beautiful Edition*

I stopped by my friend Craig's house today to check out his xeriscaping (that sounds sort of obscene or personal, but for those of you who live in areas of the world where it rains more than once every four years or so, it's what we do to cope with drought) and also had the pleasure of seeing his friend Tom. You might remember some years back when I wrote about Tom and his husband Ed whose 80th birthday party I had the privilege of attending and providing the cake. Tom and Ed have been together for well over forty years and listening to their stories about growing up gay in the thirties and forties of the last century, as well as being a couple in this one, were sobering, hilarious and fascinating. Both are the dearest and warmest of men, and it's such a privilege to run into either of them, even if was about 110 degrees outside. Today I had Sophie in the car, and when Tom walked up to it, I introduced him to Sophie. He said, Hi, Sophie! and I quickly told him that she wasn't able to talk but that she understood him. Tom said, just as quickly, Well, we have enough talkers on this earth, so that's just fine! 

Then the skies opened up with rain, cleansed my soul, and plumped up my heart so that I jumped out of the car and pledged my eternal troth to Tom for being such a beautiful, inclusive man. Just kidding on the rain part. I would have planted a giant kiss on his lips if my own weren't so damn dry. I did admire Craig's xeriscaping, though, and shed a bit of rain on my own when I drove away. I've said it before, dear Reader: sometimes it IS the small things that can make or break you.










* Things People Say is a device I use throughout my book in progress, but they're generally stories of more outlandish things people say when faced with Sophie's disability. It's been my experience that the sort of comment that Tom made is a rare exception to the rule.