The Disabled God, by Eiesland
Jan. 20th, 2023 07:57 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
lb_leeI'm very dopey from painkillers, so I'm rambly!
One of our friends sent us a gift of books to keep us entertained during our recovery, and one of them is The Disabled God: Toward a Liberatory Theology of Disability, by Nancy Eiesland, made in 1994. It was recommended by a blind minister friend of ours, who we met doing Arisia disability panels together back before the pestilence, and now we have a copy! I'm only about 50 pages in, but it feels like a breath of fresh air and is definitely giving us food for thought for Madgic #3: God, Forsaken. The focus of the Disabled God is on physical disabilities in a Christian context, but a lot is still applicable!
"The bodies we inhabit and the lives those bodies carry on need not be perfect to have value." (15)
"In American society, the temptation to hide our difficulties from others is endemic. For the person with a disability, denial has dangerous consequences. Physically, denial seduces us to ignore glaring physical warning signs. Emotionally, denial leads to atrophy. Ignoring disability means ignoring life; it is the precursor to isolation and powerlessness. Another option for the person with disabilities is to focus on the pain, emotional and physical. For some the pain is great, so it is no wonder that it occupies a prominent place in everyday life. But the telescoping of our lives into simplistic categorizations of good and bad, pain and pleasure, denies that the lives of people with disability, like all ordinary lives, are shot through with unexpected grace, overwhelming joy, and love returned. Life is simply a mixed blessing." (15)
I sometimes think folks have trouble knowing what to make of me. They see the books we've made about the grim parts of our history, and they have a hard time squaring it with my happiness. Since a lot of people equate happiness with the avoidance of pain, they can't wrap their heads around the idea that I can be happy AND regularly in intense pain, so they think either my joy or my pain must be not as big as they are. And that's not true! I tried the whole pursue-pleasure-avoid-pain model of happiness, and it never worked for me.
"Between rejection and uncritical acceptance of symbols and myths there is a third model: 'the symbol gives rise to thought.' [...] Meditation on symbols 'starts from speech that has already taken place and in which everything has already been said in some fashion.' The task [...] then is not to telescope history into a generic universal symbol, but to remember what has been symbolized already and how complex those symbols are." (23)
"Historically, rather than naming ourselves, the disabled have been named by medical and scientific professionals or by people who denied our full personhood. These professionals considered disabled persons to be less intelligent, less capable of making the 'right' decisions, less 'realistic,' less logical, and less self-directed than non-disabled persons. Thus 'capable' persons and experts needed to define the experience of disabled individuals." (25)
"People with disabilities have been encouraged to see our needs as unique and extraordinary, rather than as society-wide issues of inclusion and exclusion. [Accessibility] means opening the meaning of 'normal' to the ordinary lives of people with disabilities." (28)
"DeVries has sustained her self-definition as different and ordinary. She has developed numerous strategies for protecting herself from people's attitudes that her body is inferior and unacceptable." (36)
This book is fond of saying "ordinary and nonconventional," or "different and ordinary," and I really love that. Part of why I still like the name healthymultiplicity.com is that juxtaposition, in a culture that insists that multiplicity is inherently an unhealthy way to be (and a subculture that, in backlash, considers "healthy" to be an inherently ableist concept). I want to open the meaning of "healthy" to plural lives, not just let it be co-opted by the mainstream as a synonym for "approved as normal by society." When I say healthy multiplicity, I don't want it to mean, "good at work and school, able to pass as singlet, not 'crazy' or 'cringe' or impaired." I want it to be an embracing of life on our own terms, finding what happiness and stability suit us, regardless of whether it is "normal" or "high-functioning." Health should be so much more than "how well you're able to do what society wants you to do."
This book also goes into some interesting cripping of embodiment--what it means to have a body, what it means to have YOUR body:
"Although DeVries has rejected prosthetic devices that encumbered her rather than increased her mobility, she has incorporated functional ambulatory devices into her understanding of her intact body. She describes the battery for her electric wheelchair as 'my legs' and the mobility she gains from her wheelchair as 'walking.' In so doing, DeVries subverts the notion that she has a 'natural' body and other 'unnatural' accoutrements. Her body doesn't stop with the bones and flesh. She incorporates devices that promote her self-definition as a healthy, mobile, and intact woman.
"DeVries's self-image is also shaped by unique social relations because of her disability. DeVries includes in her self-description images of herself dancing and running. While these images are shaped, in part, by her active imagination, they are also formed by the intimate relationship between DeVries as her able-bodied sister.
Says DeVries, "[...] Ever since Deb [younger sister] could walk, she was taking care of me. I saw her body move from childhood's awkwardness to adult gracefulness and strength. But not only did I see this, I felt her movements. iN a sense, part of her body was mine too. So, since I knew how her body moved, I could coach her in dancing."
"Her question highlights an experience she knows to be outside able-bodied categories. To suggest that she embodies not only her own, but her sister's body as well, does not fit the 'normal' understanding of the world and may sound pathological to some. [...] Her experience reveals a transformed understanding of independence, premised not on physical detachment by rather on relatedness and solidarity." (37-38)
This makes total sense to me, and I think a lot of people do aspects of this, whether they're disabled or not. When I lost my wedding ring, I remember feeling it like a punch to the gut. I was used to the familiar comforting texture of it on my finger, the symbol of what it meant. It had indeed become part of my self-image, even though it didn't do anything but shine. And obviously, we headmates share a vessel, which is ours even as it doesn't belong to any single one of us.
Another disabled woman, Mairs, describes her "nonconventional body" as "encompassing artificial body parts": "I don't think about my brace any more than I think about my cane. I've incorporated them, I suppose: made them, in their necessity, insensate but fundamental parts of my body." (43-44) "Carefully she moves toward the realization she can live in her 'crippled' body and urges her reader to accompany her. For her, as for many people with disabilities, this is an ambiguous discovery. It means days of lumbering, plodding, punching through life. This is not self-pity; it is realism." (45)
"Difficulty and doing things the hard way have their uses, Mairs has discovered. She found 'how I can not merely admit to having a difficult life but also use the difficulties I've acknowledged to enrich the life.' These horrible things need not diminish us; they can make us more fully aware of the full range of things human. [...] Mairs has fashioned a difficult life, in contrast to our constant search for ease and painlessness. Her difficult life need not be denied or descried [sic; I think she meant decried?]. It need only be lived." (45-46)
One of our friends sent us a gift of books to keep us entertained during our recovery, and one of them is The Disabled God: Toward a Liberatory Theology of Disability, by Nancy Eiesland, made in 1994. It was recommended by a blind minister friend of ours, who we met doing Arisia disability panels together back before the pestilence, and now we have a copy! I'm only about 50 pages in, but it feels like a breath of fresh air and is definitely giving us food for thought for Madgic #3: God, Forsaken. The focus of the Disabled God is on physical disabilities in a Christian context, but a lot is still applicable!
"The bodies we inhabit and the lives those bodies carry on need not be perfect to have value." (15)
"In American society, the temptation to hide our difficulties from others is endemic. For the person with a disability, denial has dangerous consequences. Physically, denial seduces us to ignore glaring physical warning signs. Emotionally, denial leads to atrophy. Ignoring disability means ignoring life; it is the precursor to isolation and powerlessness. Another option for the person with disabilities is to focus on the pain, emotional and physical. For some the pain is great, so it is no wonder that it occupies a prominent place in everyday life. But the telescoping of our lives into simplistic categorizations of good and bad, pain and pleasure, denies that the lives of people with disability, like all ordinary lives, are shot through with unexpected grace, overwhelming joy, and love returned. Life is simply a mixed blessing." (15)
I sometimes think folks have trouble knowing what to make of me. They see the books we've made about the grim parts of our history, and they have a hard time squaring it with my happiness. Since a lot of people equate happiness with the avoidance of pain, they can't wrap their heads around the idea that I can be happy AND regularly in intense pain, so they think either my joy or my pain must be not as big as they are. And that's not true! I tried the whole pursue-pleasure-avoid-pain model of happiness, and it never worked for me.
"Between rejection and uncritical acceptance of symbols and myths there is a third model: 'the symbol gives rise to thought.' [...] Meditation on symbols 'starts from speech that has already taken place and in which everything has already been said in some fashion.' The task [...] then is not to telescope history into a generic universal symbol, but to remember what has been symbolized already and how complex those symbols are." (23)
"Historically, rather than naming ourselves, the disabled have been named by medical and scientific professionals or by people who denied our full personhood. These professionals considered disabled persons to be less intelligent, less capable of making the 'right' decisions, less 'realistic,' less logical, and less self-directed than non-disabled persons. Thus 'capable' persons and experts needed to define the experience of disabled individuals." (25)
"People with disabilities have been encouraged to see our needs as unique and extraordinary, rather than as society-wide issues of inclusion and exclusion. [Accessibility] means opening the meaning of 'normal' to the ordinary lives of people with disabilities." (28)
"DeVries has sustained her self-definition as different and ordinary. She has developed numerous strategies for protecting herself from people's attitudes that her body is inferior and unacceptable." (36)
This book is fond of saying "ordinary and nonconventional," or "different and ordinary," and I really love that. Part of why I still like the name healthymultiplicity.com is that juxtaposition, in a culture that insists that multiplicity is inherently an unhealthy way to be (and a subculture that, in backlash, considers "healthy" to be an inherently ableist concept). I want to open the meaning of "healthy" to plural lives, not just let it be co-opted by the mainstream as a synonym for "approved as normal by society." When I say healthy multiplicity, I don't want it to mean, "good at work and school, able to pass as singlet, not 'crazy' or 'cringe' or impaired." I want it to be an embracing of life on our own terms, finding what happiness and stability suit us, regardless of whether it is "normal" or "high-functioning." Health should be so much more than "how well you're able to do what society wants you to do."
This book also goes into some interesting cripping of embodiment--what it means to have a body, what it means to have YOUR body:
"Although DeVries has rejected prosthetic devices that encumbered her rather than increased her mobility, she has incorporated functional ambulatory devices into her understanding of her intact body. She describes the battery for her electric wheelchair as 'my legs' and the mobility she gains from her wheelchair as 'walking.' In so doing, DeVries subverts the notion that she has a 'natural' body and other 'unnatural' accoutrements. Her body doesn't stop with the bones and flesh. She incorporates devices that promote her self-definition as a healthy, mobile, and intact woman.
"DeVries's self-image is also shaped by unique social relations because of her disability. DeVries includes in her self-description images of herself dancing and running. While these images are shaped, in part, by her active imagination, they are also formed by the intimate relationship between DeVries as her able-bodied sister.
Says DeVries, "[...] Ever since Deb [younger sister] could walk, she was taking care of me. I saw her body move from childhood's awkwardness to adult gracefulness and strength. But not only did I see this, I felt her movements. iN a sense, part of her body was mine too. So, since I knew how her body moved, I could coach her in dancing."
"Her question highlights an experience she knows to be outside able-bodied categories. To suggest that she embodies not only her own, but her sister's body as well, does not fit the 'normal' understanding of the world and may sound pathological to some. [...] Her experience reveals a transformed understanding of independence, premised not on physical detachment by rather on relatedness and solidarity." (37-38)
This makes total sense to me, and I think a lot of people do aspects of this, whether they're disabled or not. When I lost my wedding ring, I remember feeling it like a punch to the gut. I was used to the familiar comforting texture of it on my finger, the symbol of what it meant. It had indeed become part of my self-image, even though it didn't do anything but shine. And obviously, we headmates share a vessel, which is ours even as it doesn't belong to any single one of us.
Another disabled woman, Mairs, describes her "nonconventional body" as "encompassing artificial body parts": "I don't think about my brace any more than I think about my cane. I've incorporated them, I suppose: made them, in their necessity, insensate but fundamental parts of my body." (43-44) "Carefully she moves toward the realization she can live in her 'crippled' body and urges her reader to accompany her. For her, as for many people with disabilities, this is an ambiguous discovery. It means days of lumbering, plodding, punching through life. This is not self-pity; it is realism." (45)
"Difficulty and doing things the hard way have their uses, Mairs has discovered. She found 'how I can not merely admit to having a difficult life but also use the difficulties I've acknowledged to enrich the life.' These horrible things need not diminish us; they can make us more fully aware of the full range of things human. [...] Mairs has fashioned a difficult life, in contrast to our constant search for ease and painlessness. Her difficult life need not be denied or descried [sic; I think she meant decried?]. It need only be lived." (45-46)
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Date: 2023-01-30 04:28 am (UTC)