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ljwritesMuch like music, disability issues are something I grew interested partly due to my friends, most notably attackfish, vmuzic, and chordatesrock. As with so many other subjects, Longform for me is the intellectual equivalent of dipping my toes--I'm not at the stage where I'm working on a specific project and dive into books, articles, and everything else I can get my hands on, but when a longform article comes up that is relevant to the subject I'll save it and read it.
Apropos of joining the![[community profile]](https://www.dreamwidth.org/img/silk/identity/community.png)
disability list here are some articles I enjoyed, starting with physical disabilities, continuing into cognitive disabilities, and ending with social issues:
Articles on Congenital Physical Disabilities
The Miracle of Molly
This one is about a girl born with Fanconi anemia, a genetic disorder that causes "bone marrow failure, leukemia, and usually death in early childhood." Her parents made a controversial decision to have another, healthy child through genetic screening and IVF so Molly could have a bone marrow transplant and the hope of a healthy life.
There are a bunch of more stories of fatally ill children and I struggled with whether or not to include them, since degenerative diseases do in fact cause disabilities eventually. In the end I decided I would let this one be a sort of stand-in for all the rest, partly because (and I realize this decision is problematic on its own) Fanconi anemia also causes visible disability in the form of hand and arm abnormalities, so the article is more recognizably about disability.
The Meaning of White
In addition to being the story of a mother dealing with her daughter's albinism (I hadn't known that sight was a particular difficulty of those born with albinism), this is also wonderful ful story of worldviews. Though the author, a folklorist, knows the scientific explanations and genetic causes of her daughter's condition, she also finds meaning and solace in the stories human beings tell about whiteness.
The Princess and the Trolls
This is another "sick kid" story I came close to leaving out of the list, but I when I reread parts of it to refresh my memory I realized Adalia Rose did in fact face significant challenges in everyday life, in addition to having a short life expectancy due to her progeria (early aging).
Plus, if you want to examine both the highs and lows of social attitudes toward those who are different, look no farther than the highest of the highs in Adalia and her mother poo-pooing the idea that they are inspirational or brave--and the lowest of the low in the ugliness of the internet trolls who flung all sorts of vile epithets at her and threatened violence. Prepare to tremble in rage if you're planning to dive into this one.
The Hazards of Growing Up Painlessly
Ashlyn Blocker was born with congenital insensitivity to pain. This might not sound too terrible at first, but the dangers become obvious when you think through the implications. Basic self-preservation, such as not sticking one's hand in boiling water, is not a matter of reflex but one of reason for her, and she is unable to access the warnings from her own body. I not only learned about a disability and the challenges (difficult, but by no means insurmountable) of living safely without pain, I also gained a whole new appreciation for my own pain responses.
Seeing at the Speed of Sound
I have a particular interest in learning about deafness and Deaf culture because of a future writing project, and this article about lip-reading was highly illuminating. I didn't know 30% was a high rate of comprehension for lip-reading in English, for instance. I loved reading the author's thoughts on language and communication, and I ended up thinking that maybe communication loses nothing of its value when it is frustrating, when it takes work, when you take a risk of embarrassment and awkwardness. Isn't the willingness and courage to work together and be awkward together a form of communication in itself?
Those insights have applications beyond disability, in foreign language learning for instance, and I think that may be why I'm so intrigued by deafness. It is to my knowledge the only disability to give rise to entire sophisticated and complex languages (now threatened, some say, by cochlear implants), and I think the histories and conflicts of Deaf communities are fascinating microcosms for the examination of issues like language, thought, identity, and culture.
Articles on Acquired Physical Disabilities
The Crime of His Childhood
This is a piece on Josh Miele, who had acid splashed on his face by a neighbor at the age of 4 and lost his sight and suffered extensive damage to his face as a result. He is now a successful software engineer who worked on software for the Mars Observer among other things, did a lot of work on software for the blind, and does quite a bit of volunteer work.
I like how this story debunks common misconceptions about disability, particularly acquired disabilities. For instance Miele showed wisdom, I think, in treating his disability as a reality to be accepted and adapted to instead of a pathology he was obligated to consume his life overcoming. He did go through extensive and difficult treatments and surgeries, which was natural given the seriousness of his injuries, but put his foot down when it came to an experimental surgery scheduled when he was 11 or 12. To quote: "He told his family he was always going to look different — why go through all this pain just to look a little less different? This is how it was, and it was time to start accepting his blindness and his face, and for him to start living his life."
Josh Miele also puts the kibosh on the idea that being more careful would somehow have prevented his injury. The author, who lived in the same neighborhood as his subject when the crime happened, was one of the children who was forbidden to open the door to strangers in the wave of panic that followed. Here's Miele's response:
"That's so fascinating, but you know, it wouldn't have made a difference. I was a cautious kid. I knew who was outside the gate. I knew Bassy. You would have opened it, too."
What, you mean catastrophe and crime are things that can happen randomly to anyone, not some unimaginable Fate Worse That Death that can never ever happen to me because I'm careful and eat my veggies? Ridiculous! Perish the thought!
Forever After: A Warrior Wounded, a Family Challenged
This is a series of articles about the Schei family, and the incredible challenges they face ever since their eldest son Erik suffered catastrophic brain damage in Iraq. As I read I found myself haunted by the central moral question surrounding Erik's mother Christine's decision not to take Erik off life support even though she knew it wasn't what Erik would have wanted, knowing that he had suffered irreparable damage. She is a heroic woman, no doubt about it, and at the same time I wondered if she was just unable to say good-bye. I also wondered if she wasn't doing all she did more for her sake than Erik's.
The articles are also interesting because they're a good reminder that disability is not monolithic. Deven, Erik's brother, was also wounded in Afghanistan and lost parts of one leg, most of the hearing in one ear, some sight in one eye. He suffered traumatic brain injury and has chronic pain. Despite the obvious difficulties, though, Deven's life after Afghanistan--marriage, a job, independent living--is something Erik can never hope to have, not when he needs a special machine in his bedroom, two helpers, and thirty minutes just to be dressed and start the day. Erik admits at least once that he wishes his mother hadn't fought to bring him back.
It's a sobering look at the human costs borne by military families and the very real consequences of profound disabilities like Erik's. I found myself asking, whom does one's life belong to? Can anyone even say their life is their own and no one else's, when it is so entwined with those of loved ones? On the other hand, does life have such an absolute value that it should be saved no matter what the cost, without any regard to the patient's wishes or quality of life? I didn't have any answers, but the questions stayed with me long after I read these excellent articles.
Learning to Accept, and Master, a $110,000 Mechanical Arm
And here is the bleeding age of assistive technology: complex and experimental prosthetics that actually respond to thought and commands--sort of, after special surgery, lots of practice, and constant trial and error. It's so strenuous to get used to and so difficult to use that half the veterans who lost upper limbs choose to get by on one good arm rather than get prosthetics, in contrast to lower-limb amputees who almost all get prosthetics. Corporal Sebastian Gallegos has kept at it anyway, and dreams of making the Paralympics eventually.
So those are the articles on physical disabilities I've read and enjoyed. Comments and additional resources are very welcome, of course. The next part of this post will link to and comment on articles that deal with cognitive disabilities.
Apropos of joining the
disability list here are some articles I enjoyed, starting with physical disabilities, continuing into cognitive disabilities, and ending with social issues:Articles on Congenital Physical Disabilities
The Miracle of Molly
This one is about a girl born with Fanconi anemia, a genetic disorder that causes "bone marrow failure, leukemia, and usually death in early childhood." Her parents made a controversial decision to have another, healthy child through genetic screening and IVF so Molly could have a bone marrow transplant and the hope of a healthy life.
There are a bunch of more stories of fatally ill children and I struggled with whether or not to include them, since degenerative diseases do in fact cause disabilities eventually. In the end I decided I would let this one be a sort of stand-in for all the rest, partly because (and I realize this decision is problematic on its own) Fanconi anemia also causes visible disability in the form of hand and arm abnormalities, so the article is more recognizably about disability.
The Meaning of White
In addition to being the story of a mother dealing with her daughter's albinism (I hadn't known that sight was a particular difficulty of those born with albinism), this is also wonderful ful story of worldviews. Though the author, a folklorist, knows the scientific explanations and genetic causes of her daughter's condition, she also finds meaning and solace in the stories human beings tell about whiteness.
The Princess and the Trolls
This is another "sick kid" story I came close to leaving out of the list, but I when I reread parts of it to refresh my memory I realized Adalia Rose did in fact face significant challenges in everyday life, in addition to having a short life expectancy due to her progeria (early aging).
Plus, if you want to examine both the highs and lows of social attitudes toward those who are different, look no farther than the highest of the highs in Adalia and her mother poo-pooing the idea that they are inspirational or brave--and the lowest of the low in the ugliness of the internet trolls who flung all sorts of vile epithets at her and threatened violence. Prepare to tremble in rage if you're planning to dive into this one.
The Hazards of Growing Up Painlessly
Ashlyn Blocker was born with congenital insensitivity to pain. This might not sound too terrible at first, but the dangers become obvious when you think through the implications. Basic self-preservation, such as not sticking one's hand in boiling water, is not a matter of reflex but one of reason for her, and she is unable to access the warnings from her own body. I not only learned about a disability and the challenges (difficult, but by no means insurmountable) of living safely without pain, I also gained a whole new appreciation for my own pain responses.
Seeing at the Speed of Sound
I have a particular interest in learning about deafness and Deaf culture because of a future writing project, and this article about lip-reading was highly illuminating. I didn't know 30% was a high rate of comprehension for lip-reading in English, for instance. I loved reading the author's thoughts on language and communication, and I ended up thinking that maybe communication loses nothing of its value when it is frustrating, when it takes work, when you take a risk of embarrassment and awkwardness. Isn't the willingness and courage to work together and be awkward together a form of communication in itself?
Those insights have applications beyond disability, in foreign language learning for instance, and I think that may be why I'm so intrigued by deafness. It is to my knowledge the only disability to give rise to entire sophisticated and complex languages (now threatened, some say, by cochlear implants), and I think the histories and conflicts of Deaf communities are fascinating microcosms for the examination of issues like language, thought, identity, and culture.
Articles on Acquired Physical Disabilities
The Crime of His Childhood
This is a piece on Josh Miele, who had acid splashed on his face by a neighbor at the age of 4 and lost his sight and suffered extensive damage to his face as a result. He is now a successful software engineer who worked on software for the Mars Observer among other things, did a lot of work on software for the blind, and does quite a bit of volunteer work.
I like how this story debunks common misconceptions about disability, particularly acquired disabilities. For instance Miele showed wisdom, I think, in treating his disability as a reality to be accepted and adapted to instead of a pathology he was obligated to consume his life overcoming. He did go through extensive and difficult treatments and surgeries, which was natural given the seriousness of his injuries, but put his foot down when it came to an experimental surgery scheduled when he was 11 or 12. To quote: "He told his family he was always going to look different — why go through all this pain just to look a little less different? This is how it was, and it was time to start accepting his blindness and his face, and for him to start living his life."
Josh Miele also puts the kibosh on the idea that being more careful would somehow have prevented his injury. The author, who lived in the same neighborhood as his subject when the crime happened, was one of the children who was forbidden to open the door to strangers in the wave of panic that followed. Here's Miele's response:
"That's so fascinating, but you know, it wouldn't have made a difference. I was a cautious kid. I knew who was outside the gate. I knew Bassy. You would have opened it, too."
What, you mean catastrophe and crime are things that can happen randomly to anyone, not some unimaginable Fate Worse That Death that can never ever happen to me because I'm careful and eat my veggies? Ridiculous! Perish the thought!
Forever After: A Warrior Wounded, a Family Challenged
This is a series of articles about the Schei family, and the incredible challenges they face ever since their eldest son Erik suffered catastrophic brain damage in Iraq. As I read I found myself haunted by the central moral question surrounding Erik's mother Christine's decision not to take Erik off life support even though she knew it wasn't what Erik would have wanted, knowing that he had suffered irreparable damage. She is a heroic woman, no doubt about it, and at the same time I wondered if she was just unable to say good-bye. I also wondered if she wasn't doing all she did more for her sake than Erik's.
The articles are also interesting because they're a good reminder that disability is not monolithic. Deven, Erik's brother, was also wounded in Afghanistan and lost parts of one leg, most of the hearing in one ear, some sight in one eye. He suffered traumatic brain injury and has chronic pain. Despite the obvious difficulties, though, Deven's life after Afghanistan--marriage, a job, independent living--is something Erik can never hope to have, not when he needs a special machine in his bedroom, two helpers, and thirty minutes just to be dressed and start the day. Erik admits at least once that he wishes his mother hadn't fought to bring him back.
It's a sobering look at the human costs borne by military families and the very real consequences of profound disabilities like Erik's. I found myself asking, whom does one's life belong to? Can anyone even say their life is their own and no one else's, when it is so entwined with those of loved ones? On the other hand, does life have such an absolute value that it should be saved no matter what the cost, without any regard to the patient's wishes or quality of life? I didn't have any answers, but the questions stayed with me long after I read these excellent articles.
Learning to Accept, and Master, a $110,000 Mechanical Arm
And here is the bleeding age of assistive technology: complex and experimental prosthetics that actually respond to thought and commands--sort of, after special surgery, lots of practice, and constant trial and error. It's so strenuous to get used to and so difficult to use that half the veterans who lost upper limbs choose to get by on one good arm rather than get prosthetics, in contrast to lower-limb amputees who almost all get prosthetics. Corporal Sebastian Gallegos has kept at it anyway, and dreams of making the Paralympics eventually.
So those are the articles on physical disabilities I've read and enjoyed. Comments and additional resources are very welcome, of course. The next part of this post will link to and comment on articles that deal with cognitive disabilities.
