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April 14, 2006 | Read comments | Post a comment

Not My Advocates

I got an email from Steve Drake the other day about an email he'd received from the Hydrocephalus Association looking for stories from people with hydrocephalus and their families. Drake, Research Analyst for Not Dead Yet, says says he's "in what is referred to as the 'first generation' of shunt recipients."

"The form is horrible in its wording," he said. "It's all about asking what 'obstacles' have been 'overcome.'" 

But the real icing on the cake is at the end of the form, where there's a chart provided. It says, "please provide a subjective assessment of development of the person with hydrocephalus at this time by putting a check in the appropriate box."

The categories are: "Cognitive", "Social/Emotional", "Physical" and "Other". The choices to check off are, in reverse order:

  • Severely Impaired
  • Delayed & Challenged
  • On Par w/ Age Peers
  • Over-Achiever

Drake noticed a funny thing right way, even leaving the many language issues aside: "If I care to rate myself 'above-average' or 'excelling' in an area," he said, there's no category for that: the only available category is for "Over-achiever."

"In other words," Drake said, "no matter how I see myself, I am pathologized -- seen as dysfunctional.

"I am bothered by just about every bit of the language in this form and the attitudes it conveys," he went on. "Sheesh. These are supposed to be advocates.

"Not mine, apparently."

I could add my 2 cents' worth, but don't really think I need to. Maybe I'll just offer an echo: "These are are supposed to be advocates?"

Drake's email and my subsequent exchanges with him about it put me in mind of a draft of a report I was given to read recently. It's not a final report yet, so I'm not going to say anything specific about it, except to say that it offered more evidence -- as if we needed more -- that "professionals" (the vast group of medical folks and researchers who "do" stuff to people with disabilities) are still firmly wedded to the medical model and steadfastly refuse to abandon it. Researchers continue to plod along as though the Americans with Disabilities Act were not in existence. They make no reference to it at all in their work. They look at "problems" people face and find not discriminatory policies and practices but deficiencies in the individual who is disabled. Much like the people responsible for creating the Hydrocephalus Association form, they try to determine if individuals have "adjusted" or "learned to overcome" obstacles.

You'd think, 16 years after Congress passed a law acknowledging that problems disabled people face are largely those of discrimination, some of these groups would wake up and smell the coffee.

Posted by mjohnson on April 14, 2006 08:00 AM


Great comments.

I have developed rating scales many times in my career, and I have to say that the choice of anchor terms is absolutely crucial to obtaining a valid, interpretable result. If ones biases show through (as in choosing terms like "over-achiever" as the one way to express performance above the norm), the only result can be a biased survey.

In this case, my guess would be that the results will show a ceiling-effect where respondents just can't bring themselves to use that uppermost point of the scale. And, of course, people like Steve will just refuse to fill the silly thing out. Thus, "real world experiences" of "real hydrocephalus sufferers and their families" will likely show that they shouldn't expect too much. Shouldn't be encouraged to excel. Shouldn't be challenged. Shouldn't be viewed as "like the rest of us" in terms of even having dreams and aspirations.

Posted by: Bob Scopatz on April 14, 2006 12:18 PM

I am a parent of a child with multiple disabilities and an advocate, hopefully one of the good guys!
: ) It's scary when people who are supposed to be on the same side do things like this. For example, we have autism groups fighting to KEEP aversives/restraints in our state so as not to "limit parental choice". Over my dead body would they do that to my daughter. On a professional level, I also spent seven years as a project supervisor at Mathematica and absolutely agree that this is a skewed Likert scale. This bias will steer the results in the pre-selected direction. I thought we were all supposed to be working together.

Posted by: Lauren Agoratus on April 14, 2006 01:36 PM

Bob and Lauren (and Mary, of course),


Strange coincidence - a guy who used to work here as an intern dropped by to have lunch with his ex-supervisor. The ex-intern has hydrocephalus. So when we traded pleasantries, I shared this stuff with him. He got it immediately. There are a few areas he considers himself "above average" in, and gets that he doesn't have that option on this form. (We didn't get into the language for disability areas or the questions - not enough time.)

I haven't been able to bring myself to write the public address of the Hydrocephalus Association yet, but I'll probably work myself up to it over the weekend. I did manage to find one public listing of an email address for one of the doctors on the HA's medical advisory board - someone I impressed favorably before I went all political. ;-) I emailed him a nice note of reintroduction and alerted him to my concerns about the questionnaire - and that they are now public. We'll see if I get a response from him or from the HA.

Posted by: Stephen Drake on April 14, 2006 02:16 PM

But don't you just LOVE being applauded for having overcome the impediments that people have put your way? Expletive!

Such an outcome-biased list of options would not get a green light from a statistician. Furthermore, it would be much more informative from a qualitative perspective to ask "Why?" for each question. Sure, not everyone will bother, but that information is often more enlightening than the sheer rank-number crunching. It can also illuminate more issues that need to be assessed, by asking the people who actually do the experiencing rather than by asking the people who create the questionnaires.


Posted by: andrea on April 14, 2006 04:45 PM

PS Don't you just love the way the questionnaire does not seem to expect responses directly from the target population being surveyed?

Posted by: andrea on April 14, 2006 04:48 PM

I just went to the Association's website to leave a comment and could not find a "Contact Us" spot anywhere. However, if you want to contact doctors, find a hopsital or give the group money there are lots of contact points.


Posted by: Rus Cooper-Dowda on April 15, 2006 09:49 AM


the "contact" button is located kind of inconspicuously in the upper right hand corner. If you access the site in a small window, you might not see it at all.

It's just a button - with an email address:


And Andrea...

The marginalization of people *with* hydrocephalus is pretty blatant. The site for the Spina Bifida Association of America may be too tied to the medical model for my tastes, but they have a survey up that is much less objectionable than the "story" request sent out to HA members. (I am not a member of HA, although I paid a membership fee one year. I guess they keep me on their mailing list out of either charity or a failure to update their membership files.)

Posted by: Stephen Drake on April 15, 2006 01:09 PM

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