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capri0mniI know I've talked about this, here, before. But my recent decision to include the word "Spastic" in the title of this poem has brought the issue of how we talk about about cerebral palsy from my hippocampus to the front-left of my neocortex.
---
The following quote is the first sentence in the third paragraph on this page: Understanding Cerebral Palsy: Basic Information from WebMD.com-- a site which digests basic medical information for the lay public, and is thus often the first place many Americans go to learn about different medical conditions and symptoms.
In my Web searches regarding CP through the years, I've found this sentence quoted verbatim over and over (I swear: sometimes I think 90% of the Web is written by 12-year old boys, who think copying paragraphs out of their class textbooks = writing an essay). So that parents, on first hearing the diagnosis "Cerebral Palsy," anxious to educate themselves, and worried about their child's future will see this over and over:
(Quote)
(End Quote)
But how does this enrage me?
1) Between 35% and 50% of all
That's a mighty broad statistical range. There's also no margin of error given. I suspect that's because this statistic is made up from a compilation of many different studies done over the course of many years. But I don't know. I don't know how many different studies, how those studies were conducted, or how large the samples in each study were. It's just plain sloppy. It will likely be an ongoing Web Quest of mine to tease out the answers, but that's not something parents of a young child who needs extra help will likely have the energy for.
2) children with CP
Note Well: cerebral palsy does not magically disappear as soon as we reach the legal age of majority in our countries of residence. It's a lifelong condition. Continually referring to the people who have it only as "children" feeds into the cultural idea that we are destined to be eternally dependent.
3) will have an accompanying seizure disorder and [...] mental retardation
I realized how distinct these two sets of symptoms are when I tried to turn that sentence around: "Between 50% and 65% of people with CP have neither a seizure disorder nor an intellectual disability--" that made it pretty clear to me how one can be present, and not the other, or maybe both will be present. An analogy would be if I said: "Between 4.4% and 32% of adults between the ages of 65 and 74 have blue eyes and some level of blindness."
There are many different sorts of seizure disorders, and they are not universally linked to intellectual disabilities. Even though there may be a slightly higher correlation between the one and the other, they should not be linked grammatically as if one causes the other. As far as I can see, the two most worrisome sets of symptoms have been lumped together in order to give a higher, scarier, number, and still pass muster as being factually correct.
4) some level of
Again, that's too vague and broad to be very much help. It could very well be that all those with CP who were deemed to also have an intellectual disability have only a mild case of the latter -- just below the lower end of "normal" intelligence. But since that wording follows the scarily inflated percentages I pointed out, above, the connotation is that the "mental retardation" is likely to be severe.
5) mental retardation
"Retarded" and "Retard" are words used by bullies, with the intent to cause pain. Some would argue that, in itself, is not enough to change the language-- bullies will use whatever weapons are at hand, even if they're corrupting an otherwise good word. But even when the term is used by "Well meaning" professionals, it's used dismissively. Since the factoid I quoted above only mentions "children" with CP, I'll follow it's lead. Once children are labeled as "mentally retarded," the adults in that child's life are given license to lower their expectations of what that child's capable of. And it's perfectly okay if "school" is a fancy babysitting service, and if the children are segregated and kept isolated in their own "Special" population, not allowed to freely interact even with their fellow "mentally retarded" peers without an adult mediator present at every moment.
And even though it's the current, widely accepted, medical term used by doctors and other clinicians, the term is just plain wrong. It suggests that the people who are saddled with that label are slower to mature, mentally -- or don't mature at all. And that's false. Even people with Downs Syndrome, who are severely disabled intellectually, become adults, with maturing thoughts and feelings, and the ability to form adult relationships with other people, and lead fairly independent, adult lives, if given the chance.
Even with all the other problems with this factoid that I've already spelled out, I wouldn't be as bothered if "mental retardation" were replaced with "Intellectual disability," or even "intellectually impaired." I'm mobility impaired -- but I can still move from one place to another; I just need to do it in a different way than the mainstream, with a few more tools to help me, and more time to get there. People who are intellectually disabled, likewise, are still able to go from one idea to another-- they just need to do it in a different way, with more tools and more time.
And now, to my allusion to the Hippocratic Oath: Words are powerful. What they denote and connote shape our intellectual understanding and our gut reactions simultaneously. The passage I'm complaining about has only 21 words. These words were reviewed (and, I assume, approved) by a medical doctor [Reviewed by Neil Lava, MD on March 10, 2014]. But those words are sloppy, and are skewed toward a frightening interpretation of their subject. Many children will have to live with (And try to find coping mechanisms for dealing with) adults whose preconceptions are shaped by these very words. That is harmful. That is bad medical ethics.
...
At the very end of WebMD's two-page summary of cerebral palsy, two sources are cited for the information in the article, but there are no footnotes telling the reader which bits of information come from which source.
The first is openly available on the Web: United Cerebral Palsy Association.
The second is a professional handbook written for doctors: Developmental and Behavioral Pediatrics: A handbook for primary care (link to the listing in Google Books; there's no ebook version available, and Google hasn't "found any reviews in the usual places.")
---
The following quote is the first sentence in the third paragraph on this page: Understanding Cerebral Palsy: Basic Information from WebMD.com-- a site which digests basic medical information for the lay public, and is thus often the first place many Americans go to learn about different medical conditions and symptoms.
In my Web searches regarding CP through the years, I've found this sentence quoted verbatim over and over (I swear: sometimes I think 90% of the Web is written by 12-year old boys, who think copying paragraphs out of their class textbooks = writing an essay). So that parents, on first hearing the diagnosis "Cerebral Palsy," anxious to educate themselves, and worried about their child's future will see this over and over:
(Quote)
Between 35% and 50% of all children with CP will have an accompanying seizure disorder and some level of mental retardation.
(End Quote)
But how does this enrage me?
1) Between 35% and 50% of all
That's a mighty broad statistical range. There's also no margin of error given. I suspect that's because this statistic is made up from a compilation of many different studies done over the course of many years. But I don't know. I don't know how many different studies, how those studies were conducted, or how large the samples in each study were. It's just plain sloppy. It will likely be an ongoing Web Quest of mine to tease out the answers, but that's not something parents of a young child who needs extra help will likely have the energy for.
2) children with CP
Note Well: cerebral palsy does not magically disappear as soon as we reach the legal age of majority in our countries of residence. It's a lifelong condition. Continually referring to the people who have it only as "children" feeds into the cultural idea that we are destined to be eternally dependent.
3) will have an accompanying seizure disorder and [...] mental retardation
I realized how distinct these two sets of symptoms are when I tried to turn that sentence around: "Between 50% and 65% of people with CP have neither a seizure disorder nor an intellectual disability--" that made it pretty clear to me how one can be present, and not the other, or maybe both will be present. An analogy would be if I said: "Between 4.4% and 32% of adults between the ages of 65 and 74 have blue eyes and some level of blindness."
There are many different sorts of seizure disorders, and they are not universally linked to intellectual disabilities. Even though there may be a slightly higher correlation between the one and the other, they should not be linked grammatically as if one causes the other. As far as I can see, the two most worrisome sets of symptoms have been lumped together in order to give a higher, scarier, number, and still pass muster as being factually correct.
4) some level of
Again, that's too vague and broad to be very much help. It could very well be that all those with CP who were deemed to also have an intellectual disability have only a mild case of the latter -- just below the lower end of "normal" intelligence. But since that wording follows the scarily inflated percentages I pointed out, above, the connotation is that the "mental retardation" is likely to be severe.
5) mental retardation
"Retarded" and "Retard" are words used by bullies, with the intent to cause pain. Some would argue that, in itself, is not enough to change the language-- bullies will use whatever weapons are at hand, even if they're corrupting an otherwise good word. But even when the term is used by "Well meaning" professionals, it's used dismissively. Since the factoid I quoted above only mentions "children" with CP, I'll follow it's lead. Once children are labeled as "mentally retarded," the adults in that child's life are given license to lower their expectations of what that child's capable of. And it's perfectly okay if "school" is a fancy babysitting service, and if the children are segregated and kept isolated in their own "Special" population, not allowed to freely interact even with their fellow "mentally retarded" peers without an adult mediator present at every moment.
And even though it's the current, widely accepted, medical term used by doctors and other clinicians, the term is just plain wrong. It suggests that the people who are saddled with that label are slower to mature, mentally -- or don't mature at all. And that's false. Even people with Downs Syndrome, who are severely disabled intellectually, become adults, with maturing thoughts and feelings, and the ability to form adult relationships with other people, and lead fairly independent, adult lives, if given the chance.
Even with all the other problems with this factoid that I've already spelled out, I wouldn't be as bothered if "mental retardation" were replaced with "Intellectual disability," or even "intellectually impaired." I'm mobility impaired -- but I can still move from one place to another; I just need to do it in a different way than the mainstream, with a few more tools to help me, and more time to get there. People who are intellectually disabled, likewise, are still able to go from one idea to another-- they just need to do it in a different way, with more tools and more time.
And now, to my allusion to the Hippocratic Oath: Words are powerful. What they denote and connote shape our intellectual understanding and our gut reactions simultaneously. The passage I'm complaining about has only 21 words. These words were reviewed (and, I assume, approved) by a medical doctor [Reviewed by Neil Lava, MD on March 10, 2014]. But those words are sloppy, and are skewed toward a frightening interpretation of their subject. Many children will have to live with (And try to find coping mechanisms for dealing with) adults whose preconceptions are shaped by these very words. That is harmful. That is bad medical ethics.
...
At the very end of WebMD's two-page summary of cerebral palsy, two sources are cited for the information in the article, but there are no footnotes telling the reader which bits of information come from which source.
The first is openly available on the Web: United Cerebral Palsy Association.
The second is a professional handbook written for doctors: Developmental and Behavioral Pediatrics: A handbook for primary care (link to the listing in Google Books; there's no ebook version available, and Google hasn't "found any reviews in the usual places.")
no subject
Date: 2014-06-30 09:43 pm (UTC)"Many people with cerebral palsy also have a number of associated problems, including repeated seizures or fits, drooling problems and swallowing difficulties. Some people with the condition may have communication and learning difficulties, although intelligence is often unaffected.
Read more about the symptoms of cerebral palsy." [The original has a clicky link, obv.]
no subject
Date: 2014-06-30 10:13 pm (UTC)The United Cerebral Palsy site puts it this way (in a PDF *sigh*):
Effects:
A person with cerebral palsy may exhibit one or more of the following effects:
• muscle tightness or spasticity
• disturbance in gait or mobility
• involuntary movement
• difficulty in swallowing and
problems with speech
A person with cerebral palsy may also exhibit:
• difficulty in feeding
• impairment of sight, hearing or
speech
• abnormal sensation and perception
• seizures
• difficulty with bladder and bowel
control
• intellectual disability
• learning disabilities
• problems with breathing due to
postural difficulties
• skin disorders due to pressure sores
And, chillingly, there's this bit:
Patients who have severe forms of cerebral palsy – particularly lack of mobility, lack of availability [sic] to feed oneself, or severe respiratory impairment – are expected to have a shortened lifespan, while those who are fully ambulatory and capable of self-feeding have normal life expectancies.
HOLY-- (long swearing cut out)
Date: 2014-07-01 12:14 am (UTC)My EFFING MEDICAL DOCTORS have blithely, or 'gently' informed me that my life expectancy is at least twenty years lower than someone born without CP.
No qualifications, no escape clause, NO MAYBES, NO influence of diet, exercise, or ANYTHING.
Why on earth am I getting MORE ACCURATE data from a hobby blog than my own doctors???
Sorry. I'm not yelling at anyone, but I am seriously, seriously ticked off!
Re: HOLY-- (long swearing cut out)
Date: 2014-07-01 09:56 am (UTC)Oh, the answer to that is very straight forward: The person behind the hobby blog has 50 years of firsthand knowledge of cerebral palsy, and 48 years of firsthand experience dealing with with the arrogance and willful ignorance of doctors, social workers and teachers, and knows that they are are not to be trusted blindly, just because they have an official name tag pinned to their lapel.
Re: HOLY-- (long swearing cut out)
Date: 2014-07-01 02:31 pm (UTC)I honestly think the difference is in personality-- I tend to retreat when exhausted (mentally, physically, emotionally).
Re: HOLY-- (long swearing cut out)
Date: 2014-07-01 03:28 pm (UTC)Re: HOLY-- (long swearing cut out)
Date: 2014-07-01 03:41 pm (UTC)My stepdad's family was more like yours-- Dad was a Boy Scout, camping, hiking, cutting wood with an axe, woodworking, you name it. Our biggest mis-communications stemmed from him /not/ believing how I grew up until my mom actually owned up to how overprotective she had been.
Thank you for your persistence
Date: 2014-07-01 12:22 am (UTC)Know what I dread about having to deal with a new doctor? The "You know you're over forty... and with the CP that actually means..." conversation. I've been flat out /told/ by doctors that I'm living with a body that should be treated as nearing SEVENTY, if not older.
And that "well, there's nothing to be DONE about it" apathy has definitely affected MY attitude toward my own health, in lots (and LOTS and LOTS) of ways.
I really, really appreciate hearing a different, FACT-BASED viewpoint.
(Do I have to add that I agree with your problems with those lousy twenty-one words X GOOGLEPLEX?) Thank you.
Re: Thank you for your persistence
Date: 2014-07-01 10:08 am (UTC)And you're welcome.
And you know what's ironic about those doctors telling you (of all people) that your life expectancy is shorter? You are on the "mildest" end of the C.P. spectrum. They're not even seeing the most obvious things about you as you walk in the door -- all they're reacting to is a two-word diagnosis in their folder.
No wonder our health system is so dysfunctional and expensive.
Doctor Bell,* come back, we need you!
*the real life inspiration for the character Sherlock Holmes
Dr. Bell!
Date: 2014-07-01 02:27 pm (UTC)Absolutely amazing to find someone who /knows/ that reference!
You're probably right, too. I /am/ having some of the problems with aging (arthritis, jumping to bifocals, continuing decline in vision-- looks like a ski slope on a graph!)
When I have to deal with my doctors, I'll remember THIS conversation!
Re: Dr. Bell!
Date: 2014-07-01 03:37 pm (UTC)Next time you go to the doctor, go armed with: 1) specific questions using medical terms -- talk to them in their own jargon, and 2) a few appropriate quotes from Sherlock Holmes-- such as the one about ignoring theories in favor of the evidence. ;-)
Re: Dr. Bell!
Date: 2014-07-01 03:44 pm (UTC)Btw, have you seen "The Madman and Dr. Bell"? I'm looking for a new copy on DVD (it's that much fun to re-watch!)
Re: Dr. Bell!
Date: 2014-07-01 06:45 pm (UTC)...But it will have to wait until August, at the least. ...I'm doing Camp NaNoWriMo this month.
Re: Dr. Bell!
Date: 2014-07-01 06:48 pm (UTC)I mean, if May is my least busy month, why can't I try the process then?
Re: Dr. Bell!
Date: 2014-07-01 07:56 pm (UTC)Sorta. There are two set months in which Camp NaNoWriMo happens. This year, it's April and July.
Like all summer camps, it's more relaxed than "real life" -- you can set your own word count goal, for example, from as low as 10K to as much as 100K (I think). You also don't need to write a novel; and you can customize your genre. There's also "Cabins," which are like private, mini-bulletin boards for up to twelve people, where you can leave brief messages for fellow "campers," and chat about whatever. In the past, I've asked to be in a cabin with fellow fantasy writers, regardless of age. But this time, since I think I'm the only one doing poetry, I'm "bunking" with campers around my age.