Tuesday, August 2, 2016

Erasure



Where is the outrage? It’s limited, at best (see “No hashtag”). Why? The messages that society sends and accepts again and again form a drumbeat of “better dead than disabled” and “disabled = less than fully human.” Hard to get outraged when you can’t see someone as fully human in the first place.
via Forbes Magazine, Emily Willingham's article This is What Disability Erasure Looks Like 

I know some of you took notice when you read about the guy who slaughtered 19 people and left 26 injured in one of the worst attacks on the disabled in history. The worst, of course, would be the Nazis' extermination of them. That the latest massacre happened on the same day that we here in the United States were "celebrating" the anniversary and progress of the Americans with Disabilities Act (passed in 1990) and collectively freaking out over the circus that is our election season is ironic, at best. At worst, the relative lack of attention to this horror is -- well -- entirely predictable.

Do we know the names of these disabled people who died at the hand of a person who worked there, whose intent was evidently known by police authorities. I don't know who they are. I haven't seen a single photo of any of them, either. According to international newspapers, no names or photos or descriptions of lives were published.

These disabled people were, basically, erased.

I got a lot of reading done during the week I spent in Hilton Head.  I finished Claudia Rankine's remarkable book Citizen: An American Lyric, a collection of essays and prose poetry that is unlike anything that I've ever read and that quite literally blew my brain up in a million bits only to settle down in what is, perhaps, an entirely different formation. It's a book about race and erasure, about resignation and what happens to the body, the body of color, specifically, when it is continually thrown against -- literally and figuratively -- a white culture. The essay about tennis player Serena Williams should be required reading for every literate citizen of this country.

You begin to think, maybe erroneously, that this other kind of anger is really a type of knowledge: the type that both clarifies and disappoints. It responds to insult and attempted erasure simply by asserting presence, and the energy required to present, to react, to assert is accompanied by visceral disappointment: a disappointment in the sense that no amount of visibility will alter the ways in which one is perceived.


I also finished a new novel titled Pond, by Claire-Louise Bennett. It's a strange and haunting piece of fiction that is wildly eccentric, intensely interior and difficult to describe, but I loved it. Here's a passage that I marked immediately, not realizing until later why it resonated so much with me:
I feel quite at a loss for about ten minutes and it's a sensation, I realize, that is not entirely dissimilar to indifference. So, naturally, I handle it rather well.

I thought of both passages immediately when I read Emily Willingham's brutal article This Is What Disability Erasure Looks Like that appeared in Forbes on July 27th.  Read it and come back.


A man prays at a makeshift altar in front of the Tsukui Yamayuri En care centre for the disabled in Sagamihara, Japan.Photo: The Asahi Shimbun


I thought of Rankine and Bennett's passages immediately after reading the Willingham article because of my own experience raising Sophie. If you've been reading this blog for a long time, you know what I'm talking about. Here's what I'm talking about. Every casual gesture of a physician, every failed treatment, every fight with an insurance company, every IEP meeting, every I could never do what you do, or would you have had an abortion if you knew? The what a waste her curls are, aren't they? and she'll never be a model so we won't reset her broken leg, Is this medically necessary and Would you consider putting her in a home? Erasure.

What, exactly, do you not understand about love of your child? No matter.

Anger and the necessary energy to make presence known morphs, eventually, at least for me, into resignation, a seeming indifference, a handling well. I handle well. I handle well. In dreams I am a dragon on the edge of a dark cave, my tail a trail behind me, its scales hard green, an accumulation of years.

Swish.

 

36 comments:

  1. And once again, you open my eyes, you calmly and lovingly show me what is right before me.
    The beauty. Sophie. Loved into and through this life.

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  2. When a disabled person dies, many condolences tend to include the sentiments that the passing was a relief or that the person is in a better place.


    The Japanese culture has its own set of rules. The families of those persons killed and injured did not want the names made public. I do not know if it has something to do with their disabilities bit could

    I was heartened by the comment that a taxi driver there made, that he (the murderer) was the worthless one

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    1. I won't pretend to know the specifics regarding disability culture in Japan, but II don't think erasure is limited to them alone.

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  3. People who make the remark that they don't know how you do as you do, are often being honest that they truly do not know. There are many out there who do not, cannot, will not. They either give up the child to institution, fostering, adoption, or just not put the time that such a dependent should be getting. Tragically, some even attempt and succeed in doing away with disabled ones, as this discussion is pointing out.

    It is also a simple fact that most people do not want to do that sort of caretaking and do not want to need it for themselves. Yes, many would rather be dead. So these are truths that we need to address, as it is not just talk, but realities. You may not think of yourself as a hero or angel, but for many you are as it is beyond their imagination that they would do as you do, and many won't do it.

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    1. Thank you, Cath. I always appreciate your thoughtful comments.

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    2. As long as it is understood here that sometimes, the choice to place a disabled child out of parental home for care is not generally stemming from unchecked selfishness or a lack of love for the child in question. There are extenuating circumstances for some, particularly in places where home supports are lacking. I personally have respect for any parent who sits down with him/herself and admits to being unable to do the job properly, and so makes that very difficult decision.

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  4. "Anger and the necessary energy to make presence known morphs, eventually, at least for me, into resignation, a seeming indifference, a handling well." I understand this intimately in terms of race, in terms of being the mother of black children in a society that prizes whiteness. I understand it intimately in terms of being a fat person in a culture that prizes thinness. In terms of disability, I only glimpse it through my own mobility issues, and through the intense, vivid, passionately delivered education you have allowed us here. I am grateful for it, grateful for the light you shine on our indefensible lack of knowing, so grateful you speak up for beloved Sophie, who lives in my heart now, in all our hearts, who will never be erased. As Cath says above, you are a hero and angel to many, and you are a fire breathing teacher too.

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    1. Thank you for your constancy, Angella, for your eloquence and support.

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  5. Thank you for being the dragon, and for imparting the analogy. Whether we want to be or not, I certainly wish that society had not created a need for to us to become dragons. Thank you for this evocative post, and for the feeling of solidarity that comes with it.

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  6. I have recently been thinking exactly the sentiment presented in the Forbes article: that society, even if unconsciously, supports the erasure of mentally and physically disabled people. (perhaps because of the article about Geel, Belgium) No one will say it but it's there, and it angers and appalls me. Education seems a sort of antidote, but it's hard to come by - a quiet voice in the cacophony.
    Resignation is a wearying burden in it's own way, but I think your green scaled tail is more than just a dream. You're powerful and you always bring with you a swishing tail of education, we need that...hard work and wearying.
    I'm grateful to you and I try to carry that education forward as much as I can, because of your hard work.

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    1. What a beautiful comment, liv. Thank you!

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  7. So powerfully said, so sadly true. Thanks, too, for the link to Emily's piece.

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    1. Thank you, Ellen. It's so nice to see your name. I hope you're well!

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  8. Outraged! That's all I can say.

    Best,
    Bonnie

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    1. That says it best, Ellen. Thank you!

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  9. Dear Elizabeth-Two photos, one of Sophie in her beauty and the other, a man in a wheelchair before an altar to lives lost in Japan-people who were considered 'less than' by the murderer.

    Is it our fear of becoming 'other'? We are all temporarily able-bodied, as we age and our mortal bodies crumble and falter. At least that, if illness and accident don't claim us before old age. We are all impermanent, here for a bit of time, just a bit of time. And the mercy we show one another is our mandate in this life. Sophie's life is precious. And we are here to witness, thanks to your unwavering and fierce love for your child.

    XXX Beth

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    1. Thank you, Beth, for all your loving words and support.

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  10. What a fabulous picture of Sophie! She is lovely! And I will read the Forbes article now. Thank you!
    Chris M.

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  11. Absolutely understood that placing anyone, child or adult, disabled or not, elsewhere is often the most selfless, and the best option. Many times when that is done, there is some lingering regret in doing so, especially when seeing a similar situation with caretaking at home. Or instead of a regret, a reaffirmation for having taken a pass on that commitment.

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  12. It is more than I can bear. I dealt with this many times throughout Maggie's life. I invite you to re read this Maggie World: Aren't you glad you asked me here...(http://sfmaggie.blogspot.com/2014/06/arent-you-glad-you-asked-me-here.html#links)

    If people only knew, they might aspire to the perfection of a Sophie or a Maggie or a Lueza rather than considering them "less than."

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    1. Yes, Sally. Absolutely. And I remember that piece --

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  13. Thank you for the insights you provide. Your love for your daughter shines through in every one of your posts. The comment from Tanya, above ("Whether we want to be or not, I certainly wish that society had not created a need for to us to become dragons.") is very moving.

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    1. Tanya is a beautiful and fierce human being! Thank you for your kind comment, Taxmom.

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  14. I cannot believe the idiotic things people have said to you about Sophie. I've met her. She's not erased in my mind. And I continue to be blown away by your thought provoking writing.

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  15. I also suspect racism. The victims weren't white or American or European. And i agree with a commente above. Great shame in japan to be disabled.

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    1. I disagree that it's about racism. It's about ableism -- and it exists wherever the disabled are, which is everywhere.

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  16. Good lord. I am amazed at some of the things people say to you. Who says things like that?!

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    1. Oh, and as some others have suggested, I wonder if the lack of media attention given to the Japanese victims stems from culture. If the authorities didn't release their names, it would be hard to report them. I just don't know what the backstory is there. But you're right -- it's interesting that there isn't the same demand to know, as there is with victims of recent terrorism in Europe, for example.

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    2. I understand that the Japanese, like many cultures, hide their disabled. But I would argue that despite our progressive laws, these vulnerable people in our country are at risk of or experience it daily.

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  17. My heart broke when I read that story and it haunted me for days. And something that resonated for me in your words was the absolute shiftiness of comments that deny the humanity of people with disabilities because of their contributions or lack thereof ("she'll never be a model..."). While it isn't the same thing, it is reminiscent of the narrative that tells people they ought to care about sex assault and women's issues because 'she might be your sister or your mother or your daughter.' Bullshit! We ought to care about each other because we are all human beings with worth. Our relationship to other people, our ability to be a cog in the machine that is capitalism, our efforts to take care of other people - those do not determine our value, and I think it is one reason that people with disabilities are so easily erased in particular cultures. We fail time and time again to acknowledge that we are all inherently valuable simple because we are. Love.

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    1. Exactly. And thanks for adding to the discussion. You're the best!

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  18. I wonder if there is a difference in cultures or disabilities. I find that the doctors that deal with Katie are very kind. Our family doctor is also that doctor who delivered Katie which probably makes a huge difference. There was only one doctor who was an ass, but I think he was an ass with everyone. We stopped seeing him. He's the one who told me that my week old baby could end up blind. Sophie's epilepsy is refractory which means the doctors who see her are failures, by their definition. They cannot "fix" her epilepsy. Most doctors don't like not being able to fix things I've found.

    However, I do agree that society as a whole has a hard time with disability. I think it's fear. Fear that "there but for the grace of god go I" or even worse, my child. People don't want to see or hear about such horrors because it frightens them. The truth is we will all be disabled at some point in our lives and will need the help and kindness of those around us.

    What a beautiful photo of Sophie. I am always so envious of her flexibility:)

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