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Aug. 25th, 2015 10:51 pm
Time Travel
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nightengaleskndI am reading (re-reading) a book written in 1952. The book opens in 1940 with the birth of the author’s daughter, and ends in 1952 when the daughter, Karen, is 12. It’s a true story, possibly one of the first books written by the parent of a child with a disability about that experience. My edition came out in 1983 and includes a forward by the author written that year.
I did not read the book in 1983, when I was seven. I was precocious and a voracious reader of books about disability, but not quite that precocious. I probably got my copy in 1988 or 89, when I was about 12 myself.
Karen – for that is the name of the book, as well as the name of the child, well, person, really – was not my first introduction to cerebral palsy, since it had come up in some of the books I had read on disability in the children’s section of the library. It was my first in-depth look, however. So I delved right in.
It was also an early look at historical factors in disability, in a lot of ways, more immediate than the books I’d read about Helen Keller or Louis Braille in many ways. At some point, I realized that Karen was about the age of my parents. At every point, I realized the forward was written in my lifetime.
Karen’s parents were advised to place her in an institution. I’m not sure I’d previously realized that was something still done in this century. Which is to say that century, now that it’s the next century. At one point, they were told that the solution for cerebral palsy was known in China, which was to leave such children on a mountain top. That was a solution for disability I’d previously only encountered in history class in a description of ancient Sparta. I’d push these all off as things in the past, but a co-worker with two preteen children told me of bringing her infant daughter to a new pediatrician. She mentioned her older child had autism, and the doctor asked if he lived at home. (Yes, there are children with disabilities who do not currently live at home. No, this was not common enough in 2000 to have made it an OK thing to ask.)
Karen was written, and Karen took place, and Karen lived before the civil rights laws were passed to protect people with disabilities. Children with disabilities did not have a legal right to an education. Accessibility wasn’t expected pretty much anywhere. Karen’s parents, the book author, Marie Killilea and her husband, founded the group which later became United Cerebral Palsy. It was years before I encountered this organization again, and years further before I made the connection.
The language is at once old and new. The term “handicapped” was used. I know it’s supposed to make me cringe, but I’ve always actually preferred it to the term “disabled.” Killilea also describes a family meeting held around 1943, where they decided to always describe their daughter as “not being afflicted with cerebral palsy, but affected by cerebral palsy.” That’s pretty progressive for 1943.
Some of what we know about cerebral palsy has changed. We now only term something CP if the causative injury occurred in a developing brain, generally before, during or shortly after birth. Their doctor used the term more loosely to describe motor impairment caused by brain damage, including accidents or injury to adults. The categories of CP have changed some. The treatment recommendations have changed more than some. As I learned contemporary medical theories, I have had to unlearn my historical ones.
I recognized myself in the book in only one spot. I still do. It’s not in the description of spastic muscles, which I don’t have. It’s in the description of overflow, where one body part starts moving involuntarily when other parts are active. I was about 12 when I realized I had this after reading about it.
Karen is a high school graduate by the end of the sequel and over 40 by the time the forward was written. I’m nearing 40 myself now. Karen and I were children together in the text and are middle-aged together in the forward. Only Karen Killilea, who I believe is still alive, is really in her 70s.
I’ll probably read it again in a few years.
**************************************************************************************************************
I am reading (re-reading) a book written in 1995. The book opens in 2058. It’s a cross between science fiction, mystery and romance. (I skim over the romance sections just enough to make sure I’m not missing any plot.)
I did not read the book when it first came out. I probably got my copy in 1998 or 1999. But it was written in 1995. I have to keep remembering that.
I’d describe the book – the series, really – as low to mid sci fi. It has regular trips to the moon but no aliens. The main character is a NY police detective who ends up marrying the richest man in the world. That’s a spoiler for the first book, but since the book was written in 1995 and there are now dozens in the series, I think it’s OK.
Their past is our future. There’s a made up Urban War. 9-11 never happened. Guns have been outlawed, which doesn’t stop people from killing each other, often more than once per book. Prostitution is legalized and regulated. Food is mostly vegetarian and there are shortages of chocolate, coffee, real meat. Some of the slang is exactly the same, and some is ours with the labels rubbed off. Hospitals are called “health centers,” which I suppose meant my former employer was forward thinking when it rebranded itself a Health System instead of a Hospital System. Or it may have been past thinking, since we don’t know when, between 1995 and 2058, this shift occurred.
The technology is at once strange and familiar. The protagnonist’s car flies, albeit not very well. It can drive itself, although it generally doesn’t. Self-driving cars were much less a possibility in 1995. I’m planning to own one now within a decade. I’m not sure cars will be person-drivable by 2058. I also don’t think they’ll fly. Androids supply some security and other functions. I’m not holding my breath for that one.
All phones are video phones. I believe that technology was rarely available in 1995. I thought then, and I think now, that enabling video as a default setting is simply absurd. No one should have to quickly say “video off” before answering a call from your boss while you are in your pajamas or birthday suit. Many people have mobile phones, called “links,” certainly many more than had them in 1995, but they aren’t as ubiquitous and functional as most cell phones are today. People still have to call multiple numbers to reach people. The police can’t easily trace mobile links to locate someone.
Texting hasn’t been invented yet. Or blogs. The police computer can calculate probabilities but it’s search engine can’t unearth nearly as much as Google. E-mail is a thing in 2058 (it was in1995, too) but computers are overall more independent than they are today. People have to constantly send each other information – or put it on discs – that today would be on a cloud drive of some sort. A police officer can’t just log in to access lab or ME reports but has to wait for them to be sent up.
There’s some serious tech handwaving. Police officers can apply “seal-it” to prevent leaving trace evidence at a crime site. There’s a drug, “Sober-Up” that does what it says. It’s not quite clear how Eve’s “weapon” works, except that it’s not a gun.
I’m not sure what I now expect from 2058. Regular trips to the moon? Anti-cancer shots? We’re talking about 40 years into the future. This series started about 20 years into our past, so it projects about 60 years. Things which seemed plausible to me then are laughable now. Or they’ve happened already. The plot takes a backseat to the worldbuilding.
I'm trying to read/re-read the whole series.
**************************************************************************************************************
I re-read books. I always have. At one point in my own past, I stated that any book worth reading is worth re-reading. I don’t quite follow that anymore, but I do frequently revisit old friends.
I read quickly, which helps. I re-read both these books within about a week of each other. Of course, re-reading is probably faster than reading.
Yes, I reread murder mysteries. Sometimes I remember whodunit and sometimes I don’t, but I don’t particularly care either way. Regardless, I read mysteries to enjoy watching the protagonist figure it out, not to figure out what they figure out.
I notice new and different things each time. Sometimes I notice special little gems of phrasing I’d not caught before. Sometimes I notice continuity errors.
I change over time. What struck me in a book at 12 or 14, perhaps identifying with a child character, is different than my perspective nearing 40, identifying more with a parent character. Or perhaps I still see myself in that child, but as a “was” rather than an “is.” I know more over time. Consider what I know now about cerebral palsy, reading Karen, when once most of what I knew about cerebral palsy was from Karen.
Often, when I re-read, I remember my previous thoughts and life circumstances. There are books I never revisit without hearing in my head the music I sang in chorus that semester. There are books which bring me back immediately to 8, or 18, or 28.
And time changes over time, too. In my past week of rereading, in 2015, I’ve gone from 1940 to 1953, to 1983, to 1988, to 1995, to 2058. Reading about the past in the present, remembering reading about the past in the past. Reading about the future in the present, remembering reading about the future in the past.
So I’m left with platitudes. Past is prologue. Those who do not study history are doomed to repeat it.
Or maybe I’m just left with a good book to read. (Re-read)
I did not read the book in 1983, when I was seven. I was precocious and a voracious reader of books about disability, but not quite that precocious. I probably got my copy in 1988 or 89, when I was about 12 myself.
Karen – for that is the name of the book, as well as the name of the child, well, person, really – was not my first introduction to cerebral palsy, since it had come up in some of the books I had read on disability in the children’s section of the library. It was my first in-depth look, however. So I delved right in.
It was also an early look at historical factors in disability, in a lot of ways, more immediate than the books I’d read about Helen Keller or Louis Braille in many ways. At some point, I realized that Karen was about the age of my parents. At every point, I realized the forward was written in my lifetime.
Karen’s parents were advised to place her in an institution. I’m not sure I’d previously realized that was something still done in this century. Which is to say that century, now that it’s the next century. At one point, they were told that the solution for cerebral palsy was known in China, which was to leave such children on a mountain top. That was a solution for disability I’d previously only encountered in history class in a description of ancient Sparta. I’d push these all off as things in the past, but a co-worker with two preteen children told me of bringing her infant daughter to a new pediatrician. She mentioned her older child had autism, and the doctor asked if he lived at home. (Yes, there are children with disabilities who do not currently live at home. No, this was not common enough in 2000 to have made it an OK thing to ask.)
Karen was written, and Karen took place, and Karen lived before the civil rights laws were passed to protect people with disabilities. Children with disabilities did not have a legal right to an education. Accessibility wasn’t expected pretty much anywhere. Karen’s parents, the book author, Marie Killilea and her husband, founded the group which later became United Cerebral Palsy. It was years before I encountered this organization again, and years further before I made the connection.
The language is at once old and new. The term “handicapped” was used. I know it’s supposed to make me cringe, but I’ve always actually preferred it to the term “disabled.” Killilea also describes a family meeting held around 1943, where they decided to always describe their daughter as “not being afflicted with cerebral palsy, but affected by cerebral palsy.” That’s pretty progressive for 1943.
Some of what we know about cerebral palsy has changed. We now only term something CP if the causative injury occurred in a developing brain, generally before, during or shortly after birth. Their doctor used the term more loosely to describe motor impairment caused by brain damage, including accidents or injury to adults. The categories of CP have changed some. The treatment recommendations have changed more than some. As I learned contemporary medical theories, I have had to unlearn my historical ones.
I recognized myself in the book in only one spot. I still do. It’s not in the description of spastic muscles, which I don’t have. It’s in the description of overflow, where one body part starts moving involuntarily when other parts are active. I was about 12 when I realized I had this after reading about it.
Karen is a high school graduate by the end of the sequel and over 40 by the time the forward was written. I’m nearing 40 myself now. Karen and I were children together in the text and are middle-aged together in the forward. Only Karen Killilea, who I believe is still alive, is really in her 70s.
I’ll probably read it again in a few years.
**************************************************************************************************************
I am reading (re-reading) a book written in 1995. The book opens in 2058. It’s a cross between science fiction, mystery and romance. (I skim over the romance sections just enough to make sure I’m not missing any plot.)
I did not read the book when it first came out. I probably got my copy in 1998 or 1999. But it was written in 1995. I have to keep remembering that.
I’d describe the book – the series, really – as low to mid sci fi. It has regular trips to the moon but no aliens. The main character is a NY police detective who ends up marrying the richest man in the world. That’s a spoiler for the first book, but since the book was written in 1995 and there are now dozens in the series, I think it’s OK.
Their past is our future. There’s a made up Urban War. 9-11 never happened. Guns have been outlawed, which doesn’t stop people from killing each other, often more than once per book. Prostitution is legalized and regulated. Food is mostly vegetarian and there are shortages of chocolate, coffee, real meat. Some of the slang is exactly the same, and some is ours with the labels rubbed off. Hospitals are called “health centers,” which I suppose meant my former employer was forward thinking when it rebranded itself a Health System instead of a Hospital System. Or it may have been past thinking, since we don’t know when, between 1995 and 2058, this shift occurred.
The technology is at once strange and familiar. The protagnonist’s car flies, albeit not very well. It can drive itself, although it generally doesn’t. Self-driving cars were much less a possibility in 1995. I’m planning to own one now within a decade. I’m not sure cars will be person-drivable by 2058. I also don’t think they’ll fly. Androids supply some security and other functions. I’m not holding my breath for that one.
All phones are video phones. I believe that technology was rarely available in 1995. I thought then, and I think now, that enabling video as a default setting is simply absurd. No one should have to quickly say “video off” before answering a call from your boss while you are in your pajamas or birthday suit. Many people have mobile phones, called “links,” certainly many more than had them in 1995, but they aren’t as ubiquitous and functional as most cell phones are today. People still have to call multiple numbers to reach people. The police can’t easily trace mobile links to locate someone.
Texting hasn’t been invented yet. Or blogs. The police computer can calculate probabilities but it’s search engine can’t unearth nearly as much as Google. E-mail is a thing in 2058 (it was in1995, too) but computers are overall more independent than they are today. People have to constantly send each other information – or put it on discs – that today would be on a cloud drive of some sort. A police officer can’t just log in to access lab or ME reports but has to wait for them to be sent up.
There’s some serious tech handwaving. Police officers can apply “seal-it” to prevent leaving trace evidence at a crime site. There’s a drug, “Sober-Up” that does what it says. It’s not quite clear how Eve’s “weapon” works, except that it’s not a gun.
I’m not sure what I now expect from 2058. Regular trips to the moon? Anti-cancer shots? We’re talking about 40 years into the future. This series started about 20 years into our past, so it projects about 60 years. Things which seemed plausible to me then are laughable now. Or they’ve happened already. The plot takes a backseat to the worldbuilding.
I'm trying to read/re-read the whole series.
**************************************************************************************************************
I re-read books. I always have. At one point in my own past, I stated that any book worth reading is worth re-reading. I don’t quite follow that anymore, but I do frequently revisit old friends.
I read quickly, which helps. I re-read both these books within about a week of each other. Of course, re-reading is probably faster than reading.
Yes, I reread murder mysteries. Sometimes I remember whodunit and sometimes I don’t, but I don’t particularly care either way. Regardless, I read mysteries to enjoy watching the protagonist figure it out, not to figure out what they figure out.
I notice new and different things each time. Sometimes I notice special little gems of phrasing I’d not caught before. Sometimes I notice continuity errors.
I change over time. What struck me in a book at 12 or 14, perhaps identifying with a child character, is different than my perspective nearing 40, identifying more with a parent character. Or perhaps I still see myself in that child, but as a “was” rather than an “is.” I know more over time. Consider what I know now about cerebral palsy, reading Karen, when once most of what I knew about cerebral palsy was from Karen.
Often, when I re-read, I remember my previous thoughts and life circumstances. There are books I never revisit without hearing in my head the music I sang in chorus that semester. There are books which bring me back immediately to 8, or 18, or 28.
And time changes over time, too. In my past week of rereading, in 2015, I’ve gone from 1940 to 1953, to 1983, to 1988, to 1995, to 2058. Reading about the past in the present, remembering reading about the past in the past. Reading about the future in the present, remembering reading about the future in the past.
So I’m left with platitudes. Past is prologue. Those who do not study history are doomed to repeat it.
Or maybe I’m just left with a good book to read. (Re-read)
no subject
no subject
One of which is, ok, so this is what it looked like when people thought that treating a neurological condition with behavior therapy would work. They describe over and over that what CP means is not knowing how to move because you don't have the same inborn knowledge as other kids. So their solution is to do a lot of repetitive drilling aimed at teaching those skills. That was a reasonable mistake to make at the time. But it very clearly doesn't work.
Why do people expect that to work any better for autism than it did for CP?
Another is: There's something simultaneously very real and very fake about that book. I think it would suck a lot to have your parents write a bestseller about you before you were even a teenager.
any number of other things
no subject
Are you familiar with patterning? It was a theory of therapy that people had to go through certain developmental stages to progress. For example, people had to crawl. This therapy was then applied to all sorts of people including those with CP, autistic people, ADHD. People who could walk well but had a behavioral disability were put physically through crawling motions over and over to set the pattern in the brain. To somehow help with the behavioral disability.
I THINK that that's where the therapy philosophy for Karen came from. I'm not positive, but the timing and the geography and descriptions match up.
With all the problems with disability theory and therapies today, which are many, hours of passive exercises are no longer recommended for any kid with CP that I've met. (Yes, hours of ABA are still recommended for autistic kids. . . yes that's also a problem.) Also no one would ever recommend the sort of bracing in use back then.
And yeah. The thing of the parent disability memoir. I don't know if Karen is the first, but it's I think the earliest one I've read. Now of course they are a dime a dozen at any bookstore. And I read them. And yeah, having a book written about you before you have reached the age of meaningful consent is not discussed nearly enough.
And yet I think Karen and With Love from Karen are important books. And I think it's better they were written than not? I think? 60 years later?
no subject
I think the approach of assuming that CP is a skills deficit may have had further reach than just the patterning thing. Proponents of patterning are kind of cultish — I think that if it had been that, she probably would have called it patterning and not just therapy?
Whatever approach it was, I think it's the same one described in _My Left Foot_ (which was also not called patterning IIRC).
What's different about the way bracing is used now?
no subject
I have never met a contemporary person with CP who had leg orthotics above the knee. AFOs for ankle/lower leg support is generally used. Some just cover the ankle and some go up to just below the knee. Many people with spastic CP who walk, do so with knees somewhat bent, and it's considered more or less OK.
Longer leg braces with knee locks (more on that in a minute) are typically used by people with leg paraysis, such as spinal cord injury, spina bifida or polio.
The other thing I don't get, and this is made worse by the fact that I re-re-re-read, is the discrepancy between some of the information in Karen and With Love from Karen. At the end of Karen, she can get herself in and out of a chair herself. This is a plot point. Throughout With Love From Karen, she can't, because she can't lock/unlock the braces. This is possibly the major plot point. And the two are never reconciled. I've been trying to figure out if the surgery had something to do with it, but it doesn't make sense in my head that a tenotomy would.
no subject
With Love From Karen... is much less like that; it's a book about the aftermaths of that. So my guess is that she gained that skill, with great difficulty as a child. But didn't have it reliably enough for it to mean that she had independent mobility all the time.
Also... she was older and bigger in With Love From Karen. That may have had something to do with it.
Another possibility is that she had knee locks for ideological reasons and didn't actually *need* them while she was small. So maybe she was actually able to walk without them being locked. (There are a LOT of places in both books where she had abilities others didn't expect her to have and didn't want her to use.). It might be that after surgery, or after getting bigger, she became unable to walk without the knee locks and that meant not being able to manipulate them reliably affected her mobility more.
I think in any case, the bigger plot point in the second book regarding braces is that they hurt and she didn't want to be in pain for no reason.
Have you read Mine For Keeps? That's a fictional child with CP who has braces with knee locks, written I think at a similar time. By a special ed teacher who wrote a bunch of books because she wanted there to be some for her students to read in which kids like them didn't get cured and didn't die.
no subject
Yes I've read Mine For Keeps. And the sequel, Spring Begins in March. And From Anna. And it's sequel, Listen for the Singing. And Jean Little's autobiography, Little By Little. And a bunch of other Jean Little's books, although not all of them. I only own Mine For Keeps and From Anna, though. And I LOVE the narrative about how Jean Little came to write Mine For Keeps for her students, especially where her students asked all those sensible questions about Clara in Heidi and Colin in A Secret Garden, the only characters with disabilities she could find at the time.
It reminds me of something I've read more recently about diversity in children's literature. The idea is that children need both "windows" to learn about people and places different from themselves, and also "mirrors" to see themselves in books. Mine For Keeps was written as a mirror that also makes a grand window. (Or did. . . it's a bit later than Karen, 1960s, but still dated. )
So yeah, I spent my childhood reading everything I could about disability, fiction and non. . . and still do. Now I claim it's helpful for my patients?
Which it is. The question came up recently at work about books about spinal cord injury for younger children. I've found a few windows but no mirrors.
no subject
As far as I can recall, all the spinal cord injury narrative fiction was terrible Have you found any that's good?
I think that, while Mine For Keeps is dated, it's also... more real than anything more recent.
no subject
Character who starts and ends the book with a disability that is not cured
Character with the disability is the protagonist in a story, and is a character with agency
Character who has interactions and development and personality traits that are not solely about disability
Character who has interactions and development that are related to disability (in other worse, acknowledging that disability is relevant to lives)
Yeah, I haven't seen anything more recent that gets any of THAT better.
But if I gave the book to a 10 year old today I'd have to explain about residential schools for children with disabilities being more of a Thing, then, and about language shifts (use of the word "cripple") not to mention, for an American 10 year old, some things about school in Canada. And that would be a lot for a lot of contemporary 10 year olds.
SCI
The two books I liked are Wheels for Ginny's Chariot (from the 60s, I read in the late 80s) and Run, Don't walk (from the 70s, I read in the 90s.) I want to make it clear that "book I liked" is not the same thing as "good."
Wheels for Ginny's Chariot was dated even then. Ginny, a teen, has an SCI shortly before the opening of the story and now has to go to a school for kids with disabilities. There's a lot of Lesson, there, including Lesson that was true to the time but I don't like, in the benefits of oralism for deaf kids. I still wish I owned a copy - I took it out of the library a bunch of times - because I'd like to re-read it from my current life perspective.
Run, Don't Walk is. . . more historical than dated. Sam, a teen, has an SCI shortly before the opening of the story and is now returning to her old school which does not have accessible bathrooms. There is also a new student at that school, Jonny, who also uses a wheelchair secondary to what sounds like, but is never named as spina bifida. Jonny starts protesting the inaccessible bathrooms. Sam wants to attract as little attention as possible Then she finds something she wants to do and is barred due to discrimination, and starts to get what Jonny is all about.
What I like about the book - and I own a copy and re-read as an adult - is Jonny's association with organized disability advocacy. That's something I realized long after I first read it. The book is actually about Section 504 of the Rehabilitation Act of 1973. So it ends up being more about disability advocacy than about disability, in a way that I like. I believe the (I think, non-disabled) had been involved with disability sports enough to write reasonably authentically.
no subject
no subject
Around the same age, I read about CP in a medical encyclopedia which mentioned some people with CP were merely "clumsy." I brought that chapter to my mother and told her it sounded like me. I was told that people who could read and understand the book couldn't possibly have cerebral palsy. Around the same time, I brought her the autism chapter of the same book, saying, "aside from the language part, this sounds just like me." I got roughly the same answer. In 1988, there was no autism without the language part."
Finding yourself in a book, fiction or non-fiction, is so powerful.