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It's not the Greatest Oppression, but it's *Mine*.... *pet-pet*
Let me be clear: my cup hath runneth over with privilege my entire life, and I know it: White, cisgendered, heterosexual, economically affluent, English-as-first language, First-world citizen, cognitively normal, and probably more that I haven't even considered.
Still....
This last week, especially early on, when I thought maybe Hurricane Irene would be a Category 3, and headed straight for my house, I couldn't help wonder what would happen if I was ordered to evacuate, and this shelter would be destroyed while I'm away (right now, it looks like it will be a middle-strength Category 1 -- still serious, but not strong enough to blow off my roof, and I've weathered a few Cat 1s here, before, just fine -- I'm certainly in a far better position then even close-by neighbors who live in areas right by the ocean, and the we've been in a drought -- not like when Isabel hit, at the end of an extremely waterlogged summer).
In my Catastrophic Thinking Mode, I'd concluded that I would be S.O.o.L, and my life would effectively be over. And it would be better for me to die here, rather than face a life without this home; I just don't have the resources to get a new house that fits me from scratch. I'd have no choice but to move into a nursing home -- and a bare-bones one at that -- without Internet, and thus access to my friends and community support. ...And now that I've written that out, it sure does look like more Catastrophic Thinking Mode, and if the time ever came to that, other solutions might become clear.
But, in any case, it's gotten me to thinking about how I got here. And I've come to the conclusion that the fact that I have Cerebral Palsy, specifically (and not just Physically Disabled, in general) is a major factor.
Cerebral palsy, according to the latest C.D.C. National Health Interview data, affects roughly 0.4% of the population.
It's not the most common cause for general physical disability (including blindness, deafness,* fatigue, chronic pain, immune deficiency, etc.).
It's not the most common cause for mobility impairment among people in general (spinal chord injury, arthritis, M.S., stroke, etc., are all more common).
It's not the most common disability, in general, to affect people from childhood onward (including cognitive disabilities, immune deficiency problems, etc.).
It is the most commonreason label for a cluster of reasons that young children are mobility impaired.
When a TV show for toddlers and preschoolers (such as Sesame Street) features a "kid around the audience's age in a wheelchair (or using a walker or crutches)" as a synecdoche for all difference, to teach tolerance, there's a pretty good chance that that kid is living with a cerebral palsy diagnosis.
And even though (as I have said here, before) no two people with C.P. ever have the same condition, the main facets of C.P. do (In my not-so humble opinion) give us reason to see ourselves as part of a common community and subculture within the broader Disability Community.
To whit (and this is all My Own Opinion -- even if you have CP, too, I do not claim to be speaking for you -- this is just the result of a brooding and ruminating over the years:
*I'm including deafness for those Hearing people who lose their sense of hearing, but do not identify as culturally Deaf.
Still....
This last week, especially early on, when I thought maybe Hurricane Irene would be a Category 3, and headed straight for my house, I couldn't help wonder what would happen if I was ordered to evacuate, and this shelter would be destroyed while I'm away (right now, it looks like it will be a middle-strength Category 1 -- still serious, but not strong enough to blow off my roof, and I've weathered a few Cat 1s here, before, just fine -- I'm certainly in a far better position then even close-by neighbors who live in areas right by the ocean, and the we've been in a drought -- not like when Isabel hit, at the end of an extremely waterlogged summer).
In my Catastrophic Thinking Mode, I'd concluded that I would be S.O.o.L, and my life would effectively be over. And it would be better for me to die here, rather than face a life without this home; I just don't have the resources to get a new house that fits me from scratch. I'd have no choice but to move into a nursing home -- and a bare-bones one at that -- without Internet, and thus access to my friends and community support. ...And now that I've written that out, it sure does look like more Catastrophic Thinking Mode, and if the time ever came to that, other solutions might become clear.
But, in any case, it's gotten me to thinking about how I got here. And I've come to the conclusion that the fact that I have Cerebral Palsy, specifically (and not just Physically Disabled, in general) is a major factor.
Cerebral palsy, according to the latest C.D.C. National Health Interview data, affects roughly 0.4% of the population.
It's not the most common cause for general physical disability (including blindness, deafness,* fatigue, chronic pain, immune deficiency, etc.).
It's not the most common cause for mobility impairment among people in general (spinal chord injury, arthritis, M.S., stroke, etc., are all more common).
It's not the most common disability, in general, to affect people from childhood onward (including cognitive disabilities, immune deficiency problems, etc.).
It is the most common
When a TV show for toddlers and preschoolers (such as Sesame Street) features a "kid around the audience's age in a wheelchair (or using a walker or crutches)" as a synecdoche for all difference, to teach tolerance, there's a pretty good chance that that kid is living with a cerebral palsy diagnosis.
And even though (as I have said here, before) no two people with C.P. ever have the same condition, the main facets of C.P. do (In my not-so humble opinion) give us reason to see ourselves as part of a common community and subculture within the broader Disability Community.
To whit (and this is all My Own Opinion -- even if you have CP, too, I do not claim to be speaking for you -- this is just the result of a brooding and ruminating over the years:
- Posture and movement, like vision, are given almost magical status and meaning. Slouching, crookedness, crawling, limping, are all linked, symbolically, with animal nature, rather than human nature, and also with the quality of a person's moral character. Navigating through that social stigma in the same years that we are developing our sense of Self must leave as strong a mark on our minds as differently-moving leaves on our muscles and bones.
- There is no single cause for CP, and in fact, despite (or even because of) medical advances and advanced prenatal and neonatal care, cases of CP have increased over the last 30 years. This (IMNSHO, again) puts "lame and crippled" children-who-grow-to-adults in a similar "Monstrous" category as those children who are born with limb differences (the original meaning of "monster"), simply because the condition/s are a physical manifestation of the Unknown and Therefore Scary. ...And this may be why the Official, "expert" definitions of CP still include a heavy assumption of mental retardation, even 45 years after the hospital psychologist recommended that my mother place me in an Special Institution for my entire life.
- All disabled people, whatever the cause, are more likely than not to be minorities within their own families. And therefore are less likely to find "safe harbor" in their own homes against the general bigotry of society at large. ...I recognize that the same is true for homosexual and transgendered and genderqueer people as well, but it's a lot more difficult for people with physical disabilities to "pass" as normal, and thus protect ourselves from -isms. And for kids with CP, this struggle usually starts from day one of our lives (Although the diagnosis of CP can be given as late as four years old, in the First World, 90% of cases begin at birth or earlier).
- Audrey often tells me of J's troubles with The Public (her other main client -- a just-turned-five boy with a different type of CP than mine). And her tales of woe and argh and wtf bring back memories of my own experiences -- mainly, the cultural assumption among figures of authority (Doctors, nurses, therapists, teachers) have the right to claim authority over a person with CP's body -- to physically grab it and manipulate it and perform surgeries on it... and to swoop in and pat you on the head, kiss your cheeks, move your wheelchair, etc. without so much as a by-your-leave.
I survived all that with my personhood and sense of self and integrity intact, and I wouldn't have it any other way. But I think I have sacrificed my comfort with physical and emotional intimacy to get there... And so, am now facing the Oncoming Storm and the Future beyond that alone. And that makes me lonely and sad.
BUT (lastly): - Whether the severity of our CP is Level I (walks without limitation) or Level V (Transported in a manual chair -- that is, without any autonomy of movement), we've hardly ever moved through the world normally. I've "met" (online) and know of people who didn't get diagnosed with CP until they were well into adulthood, but they've known, all their lives, that they were clumsy and awkward. Learning about the world and ourselves through that filter from day one gives us unique ...um... "leverage" in problem-solving and learning that even other mobility-impaired folks, who come upon the experience of Different-Moving later in life, don't get.
And that's why people with CP (among other disabilities) have always been, and will always be, part of Humanity -- the idiosyncratic ways that we move are the spark that leads to crucial inventions that benefit the species.
So, for that (among other things), I'm proud to be the monster that I am...
*I'm including deafness for those Hearing people who lose their sense of hearing, but do not identify as culturally Deaf.