This is a new thing I'm doing, where I go back through my previous blog & post shit that is still relevant in its original form. I don't have the spoons to spit out content all the time, & some stuff I have been saying for way. too. long.
Original publication date of this one? May 9, 2006. Almost exactly 7 years ago.
"Like cancer, autism is probably many diseases with many causes". (Time, May 8 2006)
Mkay. I have a few problems with that statement. First, I do not have a disease. Second, the comparison is crap. Not the "many causes" part-the part where they put a neurological difference in the same realm as a deadly disease. It's also disrespectful, but I'll get to that after the bit about suggesting alternatives to the c-word.
For all journalists writing about autism: here is a list of conditions that are much more similar in cause and how much they can screw up your life (i.e. none of them are intrinsically deadly, though a lot of people have been killed for being autistic and for some of these other conditions too):
migraines
epilepsy
depression
ADHD
bipolar
motor difficulties (fine & gross, includes mobility)
arthritis
genius
mental retardation
learning disabilities
and probably many many others. Things that don't cause death. This list is not exhaustive.
Now, why I feel the autism/cancer comparison is disrespectful. First, it's disrespectful to autistic people. We don't have something growing in us attempting to kill us. We don't have a "devastating disease" which, let's face it, cancer usually is. We don't require painful chemotherapy to stay alive. The cancer comparison is nothing but lazy writing and a way to promote funding to people trying to get rid of us.
You know who else it disrespects? People affected by cancer. Ask anyone who lost a child to cancer-they'd have that child back, autistic, cognitively challenged, it wouldn't matter. Their child would be changed (in some cases almost to someone not the kid they remembered) but they would have their baby back. Ask anyone going through chemotherapy if there's anything worse than this. Hell no. Cancer is expensive, cancer is exhausting, and cancer KILLS. Give the families a little respect. Give the people who actually HAVE cancer a little respect.
Is it really that hard to respect autistics? And families dealing with cancer? Or are we just having a vocabulary failure by all our journalists at once? Regardless of the cause, time to fix it. Get Google Health (it's the handy directory). And an apology wouldn't be overdoing it either.
The Mothers On A Mission for Hysteria* do this too, but asking reasonable comparisons of them just gets you physically attacked. We can expect, request, and even get journalists to change. Extremists, they don't. They aren't worth my effort.
*note from the future: I would no longer use the word "hysteria", instead go with "irrational fear" or somesuch. But unaltered content is unaltered.
Great point about the cancer analogy being disrespectful to people with cancer and their community just as it is to ours. I'm in the rare position of being autistic AND a journalist (although I'm not working at the moment) and I've seen the occasional really clumsy, awkward, head-desk-ey autism piece put together by people from the same company, and it made me want to shout "Why didn't you just ASK me?! I work here!!"
ReplyDeleteThis. I have (had) cancer and aspergers. The cancer was way worse to deal with. Also, while I would never want to be non autistic, I would love to have not had cancer. I am now missing my thyroid because of the cancer. I have to take daily medication for it that means I can never afford to be uninsured. There is no way these two things are remotely similar.
ReplyDeleteThis comment has been removed by the author.
ReplyDeletehttp://www.ada.gov/regs2010/titleII_2010/titleII_2010_withbold.htm
ReplyDelete"(ii) Any mental or psychological disorder, such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities. The term “physical or mental impairment” includes, but is not limited to, such diseases and conditions as orthopedic, visual, speech, and hearing impairments, cerebral palsy, autism, epilepsy, muscular dystrophy, multiple sclerosis, cancer, heart disease, diabetes, Human Immunodeficiency Virus disease (symptomatic or asymptomatic), mental retardation, emotional illness, drug addiction and alcoholism."
While some people might find it offensive to compare the prevalence statistics and funding of the ICD10 classified diseases of Cancer, Human Immunodeficiency Virus Disease, or Autism, in Public Service announcements, they all sit together in US code, as linked and quoted above, among diseases/conditions that are listed as consistently assessed as disability under the ADA definition of disability.
Some forms of Cancer are assessed as mild and some forms of Autism are assessed as mild.
There are documented cases where Autism is listed as the cause of death, in the medical literature; it is rare and not nearly as frequent as that outcome is with Cancer.
HIV is no longer considered a terminal disease.
A comparison of the statistics of prevalence and government funding in research for HIV, Cancer, and Autism, is public information available on the CDC agency website.
That is not a judgment on which disease is more difficult than the other is; it is just cold hard statistics.
Cancer, HIV, and Autism are conditions consistently assessed under the ADA definition of disability.
It is a type of disability intersectionality to suggest that Autism is somehow superior to either Cancer or HIV as legally defined disabilities, afforded equal protection under the law against discrimination, per ADA laws on disability.
There is already a case of an individual from the AIDS/HIV community taking offense that people in the Autism community put themselves on a pecking order of superiority in intersectionality.
That is ironic because that message is not coming from that "infamous" organization that only compared funding and prevalence statistics and provided no suggestion that one condition was more severe than the other was.
Paula Durbin Westby admitted it was a mistake to make that comparison of severity in the Autism Community, when approached with the offense. This message was coming, in part, from the ASAN organization and associates at that point in time.
It would be inappropriate for any government agency or charitable organization to provide a judgment call on any of the assessed disabilities under the ADA listed above as more difficult than another as that can only be determined on a case by case basis, per individual perspective.
I have not seen anyone provide a quote where that actually happened, other than rhetoric in the Autism Community.
Paula Durbin-Westby was the first person associated with ASAN to earn my respect with the quote linked below, as fair minded on this principle of Intersectionality. (That is one long word, by the way :)
I got it beat with Neuroextraterrestrialdiversity.
A 30 letter word than many people on the spectrum and the "Broader Autism Phenotype" who have seen "Star Wars/Trek" or felt like an "Alien" can likely identify with on a very personal level.
It likely exists in space and definitely exists on Google. :)
This is part of awareness and acceptance that also includes Cancer and HIV as equal partners in US code.
http://paulacdurbinwestbyautisticblog.blogspot.com/2012/07/what-do-autism-pediatric-aids-cancer.html
So, Katie, your worddump style is completely inaccessible to me.
ReplyDeleteBut I caught that "both disabilities, therefore valid" thing.
no. Not valid. They are not equivalent. Stop making my brain out to be fatal, and stop disrespecting people who are going through necessary hell to treat a fatal disease and their scared families and their survivors. Autism IS NOT LIKE CANCER. Ask any parent whose child has cancer which they'd prefer.
Or don't, because that's a fucking terrible thing to do to someone who is scared for their child. Use some empathy and think.