CP post #2: The Zombie Assumption (wadya mean, it's *still* not dead?)

I wrote the following memoir snippet back on 03/03/03:

When I was born, in 1964, it was the assumption that cerebral palsy and retardation went together as the rule rather than the exception. So when I was 2, my parents were told to bring me in to the hospital for a cognitive evaluation.

My parents and I were sitting in the waiting room, having a conversation. They were facing the door; I had my back to it. Then the nurse came in, said hello to my parents, grabbed the back of my stroller, and without a single word to me, wheeled me away into another room, where I waited until the psychologist came in (most of this story comes from memories of my mother retelling it, but I still have a visceral memory in the pit of my stomach of being grabbed from behind and spun around).

Well, the psychologist starts talking to me, and asking me to do stuff, and I just stare at him, and not say a word (since I don't know him from a martian). So he concludes that I must be retarded, and calls my mother in to break the bad news... Meanwhile, she has been stewing over how I was treated by the nurse, and decides that, in order to keep her cool, she'll answer questions with only: "Yes," "No," or "I don't know."

She comes in, sits down next to me and smiles, and when the psychologist tries to demonstrate how I don't respond, I complete all the tasks without mistake (now that Mom was there, I felt okay), while she is answering every question with "Yes," "No," or "I don't know."

So the doctor takes the evaluation of "retarded" off my chart, but puts my mother down as "hostile and manipulative" (she was obviously manipulating me, since I would only "perform" with her in the room. :-P)

I shudder to think what would have happened to me if she had been the kind of woman who is cowed by authority figures, and had accepted the doctor's diagnosis...

Over the years, I've come to believe, in my head, that the automatic assumption that cerebral palsy and mental retardation are linked was just a side effect of an earlier, benighted generation, and that, as more kids with CP are welcomed into public schools, and more adults with CP get access to places like restaurants and theaters, more people will see that we're actaually just as smart as everyone else, and that, no, actually, the center of human intelligence is not located in our legs and arms.

So, imagine my dismay when I read this "Informative article" in an overview that spiralsheep linked to, just yesterday (and, what's worse, it's framed as official and expert, and intended as one of the first places parents can turn to for accurate information:

NHS Direct -- Cerebral Palsy (UK)

Children with cerebral palsy often have other related conditions. These include:

• epilepsy,


• learning difficulties,


• incontinence,


• impaired vision and/or hearing,


• difficulties speaker [sic] or understanding other people speak,
  
• delayed growth,


• curved spine (scoliosis), and
  
• drooling (unintentional loss of saliva from the mouth).

See how high "learning difficulties" are on that list, and how this and "difficulties .... understanding" are "related conditions?" That may be technically true, in a very broad sense, because all these different problems happen to be going on somewhere in the brain. But it reads as though they're saying that Cerebral Palsy is related to a learning disability, in quality -- that somehow, we can't walk because we don't understand how to put one foot in front of the other.

And here's what a similar, American-based, introductory article says:
WebMD.com -- cerebral palsy: Topic Overview (US)

Cerebral palsy is a group of problems that affects body movement and posture. It is related to a brain injury or to problems with brain growth. It causes reflex movements that a person can't control and muscle tightness that may affect parts or all of the body. These problems can range from mild to severe. Mental retardation, seizures, and vision and hearing problems can occur in people with cerebral palsy.

(The bolded text in each of these quoted passages indicates a link to further information about that word -- which serves to highlight those symptoms above the others, and draw attention to them).


Compare that to a passage from United Cerebral Palsy's webpage (an organization for and of people who actually have CP:

United Cerebral Palsy -- What are the effects? (US Charitible Advocacy Group)

Depending on which areas of the brain have been damaged, one or more of the following may occur: muscle tightness or spasticity; involuntary movement; disturbance in gait or mobility, difficulty in swallowing and problems with speech. In addition, the following may occur: abnormal sensation and perception; impairment of sight, hearing or speech; seizures; and/or mental retardation. Other problems that may arise are difficulties in feeding, bladder and bowel control, problems with breathing because of postural difficulties, skin disorders because of pressure sores, and learning disabilities

See how mental retardation is described as being a condition alongside cerebral palsy, and not a symptom? And learning disabilities are listed last, and alongside other, preventable, problems? See how there's a distinction made between making yourself understood and understanding? Really, those are two very different things. (And also, none of those symptoms are linked or highlighted -- there's no highlighting of the scary stuff. It's just stuff you may have to deal with).

But parents who are first coming to grips with the diagnosis of CP, and dealing with the shock of it all, probably are not going to turn to a user-centered advocacy group like UCP first. They're more likely to search for websites with "Health Service" or "MD" in the name. And that's where they'll read all about "Learning disabilities" and "mental retardation" in the first few sentances. And those passages are written as if retardation is common.

It's hard for me to convey just how very, very angry this assumption makes me. Because it's a dangerous one. Because it's a self-fulfilling prophecy, most of the time.

---

Also, a new icon. I won't call it "gratuitous," because I (*ahem*) made it just so I could illustrate this rant.

And, while I was taking a bathroom break from this post, I thought of a snarky t-shirt for a student in a wheelchair: "Yes, I have a learning difficulty: My teacher's an idiot!" (probably wouldn't be too smart to wear it, though)