Monday, November 2, 2015

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 

29 comments:

  1. Bravo, my friend! I think you nailed it here. I really do.

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  2. Thank you, Elizabeth, for this post. I have a 'retarded' cousin, bipolar illness is a thread through the generations in my family and my mother was deaf. People asked all the time if she had a foreign accent or they yelled when they spoke to her because she was hearing impaired. The ignorance of others was a part of our lives as children. We knew that my mother was fully intelligent and that yelling did not help her hear any better but she was an oddity to most of the world. We were also trained 'not to stare' at those who were different, that my mother's disability was somehow shameful. And my cousin wasn't taken outside very much.

    What a bunch of mixed messages.

    When I read Andrew Solomon's book, Far From the Tree, my heart opened and broke simultaneously. Our fear keeps us separated from our human brothers and sisters, in whatever form they show up. I sit with parents who decide to keep or abort a DS baby. I care for families who have a child who is different from his or her siblings. As far as we've come in terms of disability rights, we still have much farther to go. In acceptance and kindness. Everyone is valuable. Everyone has something to offer. Everyone.

    And you're right. There is a hierarchy of acceptable disorders. Mental issues fall to the bottom. Our streets are full of mentally ill people.

    I could go on but I'll stop. Thanks for stirring this particular pot.

    Love,

    Beth

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    1. Thank you, Beth. And I think Andrew Solomon's book should be required reading for all humans for its compassionate perspective.

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  3. So well written and said and felt as always. I can't wait to buy your book for me and the public library. Beautiful quote. Yesterday's post had me shaking my head as I recently had a big fight with my co worker about please never use that word. She refused to get my point.

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    1. Keep on keeping on, Bethany! Thank you for your support --

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  4. I think your words are rich with power from your experience, intelligence and observations. And, I would not agree that it's entirely a social construct, unless you are implying that our society is capable of all evolving into a Zen like state at some point, nirvana, all of us- which I don't mock, and sometimes wonder if it might be, the way Buddhists believe we are truly headed, and here and there, I see glimpses of that. But the way we human beings are NOW, even without a society, living on a mountainside of your own construct, for life, to be thrust from multiple possibilities to fewer is never comfortable or easy or welcomed. If I can run and then can only walk, I am going to mourn that, not because walking is 'lesser' but because running is so beautiful, and it was something I can see, I felt was within my reach, but then was not. Like those who want children and cannot bear them- they grieve not because they are supposed to, but because it is their spirit's response to an earthly desire. xoxo Thank you for being always so alive in the mind.

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    1. Thanks, Maggie, for your thoughtful words.

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  5. My heart goes out to you and Sophie.

    I'm sure the person thinks they did nothing really awful. They feel like saying such things are funny. It's the cultural norm.

    Maybe someday, people will realize how careless words can suffocate the already suffering...I mean your pain of watching others put your daughter below themselves based solely on their perceived intelligence.

    I can't believe Sophie was right next to you. Maybe Sophie said something amazing, silently, feeling powerful. Someday maybe they'll create technology to make it possible to hear her voice.

    Perhaps your words will combat those words into oblivion.

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    1. I imagine Sophie feels quite powerful much of the time in her silence. Thanks for your kind words, Bea!

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  6. I'm glad you're writing a book about this, Elizabeth. It's a complex topic and I'm sure that those of us who have little direct experience with disability do not appreciate all the nuances. I'm not sure I ever considered the divisions that may exist between disabled people. Humans have a tendency to generalize among all populations, whether talking about gender, race or ability, and it never serves us well.

    I'll be interested to hear what you think about Garth Risk Hallberg's book. I just started "Let the Great World Spin" by Colum McCann, which I'm reading because I'd heard that it is similar to Hallberg's book in scope and subject matter. I intend to read it too at some point. We just got it in the library and it looks HUGE.

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    1. (And by the way, isn't Garth Risk Hallberg a great name for an author?)

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    2. "Let the Great World Spin" is one of my most favorite novels ever -- I think McCann is a beautiful genius. I'll keep you posted on the Garth Risk Hallberg tome. And yes, I agree -- the name is fantastic!

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  7. In the late 1970s when I was at uni doing my never to be finished degree in psychology and remedial education, we spent long hours discussing just that. It was a time of radical changes in thinking patterns - at least it felt like it to me. Because me concepts of disability of whatever shape and expression was utterly changed when we changed the terminology from "disabled person" to "person with disability".
    Because nowhere is there a disabled person or disabled personality/individual. We all carry various disabilities for lack of another word, our societies define which of these are grave or good or bad or whatver and that definition changes all the time. In fact, there are/have been societies where what we may today term a disablity is considered a gift.

    The crime - and I mean that - is when we use the obvious or assumed disability a person may have to stigmatize them.

    I have an invisible disability, in fact it has just been upgraded to a higher severity, so much so that I get tax relief, extra holidays and if I wish I can flash my disability card to get reduced tickets to museums and concerts. And I cannot be fired that easily, I have been made almost untouchable.

    Thank you for this and so many other posts. I am very much looking forward to the book.

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    1. The power of terminology -- yes. And it's so interesting how people push back and resist that power -- I'm thinking of those who say, "It's just a word," etc. Thanks for your thoughtful comment, Sabine. I'm sorry to hear of the upgrade in severity of your disability -- your statement about being "almost untouchable" is powerful and chilling.

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  8. I agree that disability is a social construct. Katie was never disabled in our home. She was herself. It was only when we ventured out into the world that she became disabled. I also have to say that a mental disability is not the same as being stupid. Katie is not stupid. She has an amazing memory and a fantastic sense of humor. She cannot verbalize which leads many people to assume that she is stupid. She misses nothing that is going on around her. She is also bilingual. English is her receptive language and ASL is her expressive language. She does however suffer from perseveration which makes it very difficult for her to move on. Anyway, I'll get off my soap box now.

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  9. Beautifully wrought. There's one sentence I don't understand in its context next to the preceding sentences: Jean Vanier says: "A society that honours only the powerful, the clever, and the winners necessarily belittles the weak." And then she says: "It is as if to say: to be human is to be powerful." How does the second sentence inform its precedent? I don't understand what she's trying to convey in the second sentence. ???

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    1. Thanks for your comment, Ponygecko. Jean Vanier is the founder of L'Arche, communities all over the world where those with cognitive disability live alongside more "typical" persons in community. I think in the quote above, Vanier means that our humanity is not predicated on our intellect -- that power itself doesn't make us human, that if we only honor the powerful, we are then denying them their humanity.

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    2. -- "them" are the cognitively disabled --

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  10. This very much reminds me of a comment by a disabled friend of mine. We were talking about aborting because of certain birth defects or disabilities and he was understanding of certain scenarios but thoroughly against others, "The world is better because I'm in it and we need more people like me." After reading your post I'm thinking about the line he drew between physical disability and mental and how supportive he was of physically disabled improving the world but he did not say so about mentally disabled.

    So much to say there but I will live it at that and that I am grateful you shared this and got my brain churning.

    Thank you.

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    1. Exactly, HBF. And I'd implicate myself in this sort of thinking -- at least the "myself" that existed before Sophie.

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  11. Yes, the cognitively disabled are considered at the bottom of any hierarchy of the disabled. The reason being that those in that category cannot contribute in terms of discussion. They cannot communicate to most people. THat leaves them in the vulnerable situation of being considered less than human. I'm sure, Elizabeth, that you have gone through this ever so many times regarding Sophie.

    We see those who are physically disabled often in positions of power from FDR in real life history to Professor Xavier in comic world. Not so for those who are cognitively disabled, particularly those severely so affected. Any accomplishment is on part of their loved ones, caretakers, not themselves. They truly "just be",are in the state of being, and so being, test us humans in ways of compassion, intelligence, ethics, morals, as to how we treat the most vulnerable of our society. We, as a people, are not coming in well in this regard. We are still in the Dark AGes as to how cognitive disabled people are treated. Not doing so hot in the other areas either, but a true low in this area.

    As for aborting, yes, as more info is available, the decision to abort those who will need extra work, have a high probability of needing lifetime care is happening. Yes, people, don't see how "they can do it", and are saying this to you, Elizabeth and others who are caretaking, because they cannot see themselves in that role and would likely take action not to be in it if the situation so occurred. Many, many people, simply will not take on such extensive care of another, even when that other is a loved one, and even more so if that other is not yet born.

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  12. Yesterday I made a comment on your post concerning " things people say". Perhaps I said it incorrectly and I apologize that it didn't come out the way I meant it or that I offended anyone. This is my effort to "hash" it out. I AM MENTALLY ILL, I have been all my life. I do NOT find it something to be ashamed of nor criticized for. Perhaps that woman was too. If so she DOES deserve a placard, I (!) deserve one. Anyone dealing with life long depression, suicidal tendencies or any of the painful effects that some of us with mental illness feel is not to be ostracized, ridiculed nor should we have to bear the experience of any of the thoughtless things that people say and do to us. I left out the final sentence at the end that perhaps I too deserve a placard for my own mental struggles.
    My comment to her was because it is extremely important to me that people recognize that there might be someone in a wheel chair or otherwise unable to walk the length of a parking lot. Some days I can hardly get out of bed or think that I will survive the day. But if I was able to use such a privilege and was questioned for it I would not feel that the question was unacceptable. That's just me. I am glad that people speak out and try to protect that privilege for those who are physically unable to move or to be able to move without pain or ease. However I would not be inclined to call someone a c..t. because they were trying to stand up. Her response was very hurtful to me but I DID feel that perhaps she deserved a placard as well and I Did feel that perhaps she was mentally ill. My purpose with my comment was to empathize with Elizabeth, which I certainly do, and express the complexities of this issue. I AM MENTALLY ILL , perhaps my vehemence is understandable - perhaps not. Perhaps I expressed my self well here, perhaps not. I do not discriminate any disability but no matter what the situation but I do not appreciate being called a c..t.

    Ironically, because we are mentally ill we often don't have patience with each other. My experience is that it is occasionally the case with us, because of anger or self esteem problems or simply fatigue at our positions in life, that we are sometimes critical of each other, not always, but sometimes. We lash back because we have been lashed so many times. And sometimes we embrace because of it as well. I Get her anger. I did not seek to offend anyone.

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    1. When I speak of "that" woman I mean the woman that I spoke to.

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    2. I understood you, liv, but I "know" you perhaps more than others reading might. I really appreciate your bravery in explaining what you wrote and educating us, too. The interesting thing about handicapped placards is that they actually ARE meant for those with physical disabilities, but those physical disabilities can be as invisible as mental illness or otherwise. Again, thanks for your sensitivity in moving through the world and in your bravery in explaining your own personal experiences.

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  13. I really appreciate your telling it like it is for people with severe cognitive disabilities. It's a view rarely expressed.

    Another advocate who has done so is Anna Stubblefield, former chair of the philosophy department at Rutgers. While she was recently convicted of raping a young man with severe disabilities (hence "former" chair), her words still ring true. Here's what she wrote prior to her trial - in the anthology "Disability and the Good Human Life", published by Cambridge University Press:

    "...disability rights scholars and activists have difficulty finding a place for [people severely intellectually impaired] within the agenda of "nothing about us without us". because they appear unable to speak for themselves. (I suspect too that some disability rights scholars and activists fear them for reinforcing the enabled public's beliefs about disability and incompetence.)"

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  14. I have little experience of severe disability, but I've noticed how differently old people are treated (by and large) here vs the US when an elderly begins to lose cognitive capabilities and their world becomes confused.
    I'm super excited to hear about your book, how far along are you?

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  15. This is so powerful. You are so full of power. Your words. Your ability to put it all together and open eyes and hearts.

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