Thursday, February 5, 2009

Introducing myself and this blog

I hate doing introductions. It's so much easier to write within an established context. But as hard as I tried, I couldn't think of a valid reason to avoid writing an introductory post to this blog.

I'm guessing that a lot of people who come to this blog might already be familiar with me in other contexts. The most familiar context would be that of my role as research analyst for the disability rights group Not Dead Yet, a disability rights group that helps organize the disability community's opposition to legalized assisted suicide, euthanasia and other forms of medical killing.

During an independent study course in 1991, working on my Masters degree in Special Education, I came across a 1988 article by Byron Rourke on his identification of a "syndrome" - nonverbal learning disabilities (NLD). Roughly - and I'll no doubt go into it in more detail later - the individuals have relatively high verbal scores in intelligence tests paired with relatively low performance scores. Poor coordination and visual-motor skills are near-universal.

People with "early shunted hydrocephalus" were identified as a population within this new label. People like me, that is. (Yes, those pictures on top are pictures of me)

No problem self-identifying as someone with neurological issues. I've always been aware of my poor balance, lack of coordination, poor spatial sense, and other issues that make up my version of "normal." In fact, descriptions of some of the children in Rourke's article sounded very much like me as a child - and dealt with some problems I wrestle with as an adult.

This label, though, really sucked.

According to Rourke, this Masters student would have significant problems with the following:
Concept-formation, problem-solving, strategy-generation, and hypothesis-testing/appreciation of informational feedback. Marked deficits in all of these areas are apparent, especially when the concept to be formed, the problem to be solved, and/or the problem-solving milieu(x) is/are novel or complex. Also evident are significant difficulties in dealing with cause-and-effect relationships and marked deficiencies in the appreciation of incongruities (e.g., age-appropriate sensitivity to humor). Most noticeable when formal operational thought becomes a developmental demand (i.e., in late childhood and early adolescence), relative deficits in these areas tend to increase markedly with advancing years, as is evident in the often widening gap between performance on rote (overlearned) and novel tasks.
Good thing I'd fooled my profs about the whole concept-formation thing. (wink)

Over the next few years, I became more set on a career course of engaging in policy debates where issues of disability, killing, discrimination, bioethics and myriad other elements collide. I made a deliberate decision to avoid self-identifying as someone with NLD, since I saw it as professional suicide to do so at that point. It would have opened me up to effective ad hominem attacks, based on the literature regarding people with NLD.

Since then, I've had a chance to establish myself. I may be regarded as quirky, odd, annoying -- but my competence isn't questioned very much. It's a little late to start questioning it now.

The things I do in the course of my work include - reading, analyzing and responding to research; analyzing media coverage and public discourse regarding policy issues; communicating with other activists to aid organizing advocacy efforts related to my work.

Wonder how that would have gone if people had known I wasn't supposed to be able to do any of it - or at least very well?

One more note: This blog is a work in progress. Appearances may vary a bit for awhile until I get things to where I don't want to bother with it any more.

Thanks and welcome! --Stephen Drake

24 comments:

Mark Romoser said...

First comment! Awesome!

I met Dr. Rourke when I was working at Yale Child Study Center. What I was doing was data entry and analysis for the worldwide field trial that ended up including Asperger syndrome in DSM-IV.

What Dr. Rourke was doing there was nailing down the similarities between his concept of NLD and the more widely known (especially in Europe, at the time, in the early to mid-'90s) Asperger syndrome.

abfh said...

Yes, it does look as if there are quite a few similarities in the concept of (or perhaps it would be more accurate to say the prejudice against) the two groups.

Thanks for letting me know about the new blog, Stephen!

Stephen Drake said...

Hi Mark!

I'll write more about Rourke later. That's guaranteed.

Right now, the NLD label is concentrated on deficits and tends to convey a set of low expectations to parents figuring out what kind of supports their kid needs and what kind of life they'll lead.

As I mentioned, publicly embracing the label early in my professional career would have been very damaging. Rourke has a great deal of responsibility for the overwhelmingly negative way in which NLD is viewed.

Stephen Drake said...

abfh,

To me, I think of it as areas that overlap. And the prejudice against both groups is definitely similar.

For the past few years, I've been struck by the fact that there are no prominent or positive models out there of people who have NLD or early hydrocephalus - check the wikipedia entries. Not that I'm prominent or that positive a model, but I am successful in what I've chosen to do and am pretty happy with my life.

I'm hoping that eventually some parents who've been hit with the "doom and gloom" find this blog and find out that a good life is possible.

I also know I'm not the only one "out there" with NLD who feels they're "successful" in their own view, but you have to be on the right email lists to meet them.

Virginia Beach said...

Stephen, congrats on the new blog - will sign up rigt away!! Mark Mostert

Phil Schwarz said...

"Ut oh, *you're* not supposed to be able to do *that*! Quick, call Uta!"

;-)

(Poor Dr. Frith has such a short-yet-exotic given name that she became the prop for that particular ongoing joke within the autistic community...)

Good to see you blogging here.

A propos role models: the one other person I know of with hydrocephalus besides you is the writer Sherman Alexie, a creative genius.

Stephen Drake said...

Virginia Beach,

I'm stunned that you found your way here on the first day. Welcome.

Phil,

Don't get me frithing at the mouth. :-)

I've met Alexie and talked for awhile with him twice. I'll probably write about that in the future. (btw, you'll find the film "Smoke Signals" in my list of favorite films and it was a favorite before I knew we had hydro in common)

cripchick said...

love the blog title!

Stephen Drake said...

Thanks, cripchick!

I spent a few days obsessing over a few different really boring titles dealing with NLD and/or neurodiversity when this one popped into my brain. Nice thing is, I *still* like the title, which is a good thing, since I think I'm stuck with it now. :-)

Jennifer said...

this is true for a lot of disabilities--that what the experts think the person is capable of-- turns out to be vastly different (less) than what they can actually do.

kimba said...

Hey Stephen, I'm interested that you are in your 6th decade and have a shunt. They didn't arrive in Australia till 1957 by which time I was a year old. My NLD had arrested by that stage so I didn't get one. I guess the U.S had them first.

LIZARD66 said...

Steve,

Thanks so much for sending me the link to this blog. I think it will be of great service to those of us with shunted hydro who are now (gulp!) middle-aged.

I'm interviewing for a part-time position I really want, and my greatest fear is that my NLD will get in the way. I'm fortunate that certain facets are not a big issue for me (particularly the social), but I do fear that my short-term memory deficits, organizational difficulty, and problems following orally-given directions will be a problem. My prospective employer knows of my condition, and this could be a great help to her in understanding it better.

Thanks again,

Liz W

Stephen Drake said...

Jennifer,

I was actually fortunate in escaping the dynamics you describe of lowering expectations. Because treatments with shunts were so new, the professionals dealing with me took every step of progress (including some things that were regarded with suspicion at a later date) as totally positive.

Stephen Drake said...

kimba,

actually, it sounds like Australia and the U.S. started with ventricular shunts at about the same time. I am 53. My first shunt was a lumbar shunt in early 1956. The implantation of my ventricular shunt occurred sometime in 1959. It was very new then - there was only one neurosurgeon in the city (fresh out of the Mayo Clinic) who had actually done the procedure.

Stephen Drake said...

Lizard,

Hi! Thank you for visiting!

I hope my writings, ramblings and ravings will be of some use to people. As you note, NLD (and just about every other label) has a lot of variability. Having met you, I can vouch for your social skills - then again, since I identify as NLD, my opinion might be suspect. :-)

Over time, I'll try to point out some stuff I find on the web about NLD that I think is actually helpful instead of assaultive.

That means you won't see much of Byron Rourke's stuff here unless I want to argue with the material in front of an audience. :-)

LIZARD66 said...

OMG, LOL! :)

Thanks so much for the laughs. :) I really needed them. You might remember Kim Andersen. Her younger brother, Cortland ("Corky") died a couple of days ago after being dx'ed with acute leukemia this past fall. I'm still in shock and deeply saddened, so anything that can cheer me was needed and appreciated.

LIZARD

Stephen Drake said...

Liz,

I'm sorry. I don't remember Kim, or at least can't match a face to the name. I'm always glad when I can bring a little laughter to the right people at the right times.

BTW, there are two more posts up. I'm hoping people are reading those as well. --Steve

Big Noise said...

Thanks for letting me know about your personal blog. I know I will enjoy what's on your mind.

LIZARD1966 said...

Just lettin' y'all know I'm still here. Password giving me "issues," so I created a new acct. Still reading, too! :)

LIZARD :)

Stephen Drake said...

Big Noise aka Cila,

Thanks for coming by and good to see you blogging again!

Liz,

I think you might have tried to log into this blog. Blogger sent me an email about the same time you left your comment - reminding me of the email address I was registered with.

Translation: It was checking to see if you had attempted to hack my account. :-)

Terri said...

I met you at a Tropic Thunder event, I believe. I will be interested in your writings on NLD... My son has that diagnosis and we have found that his life--though complex in many ways--far exceeds the negative literature about the diagnosis (I also have a daughter with Down syndrome and I told the pediatrician when he was diagnosed that the literature predicted a higher level of function for her than for him... and he was already reading and doing so much more.)

Stephen Drake said...

Hi Terri,

Yep - I'm the same guy with NLD you met that day.

Almost everything I write here in terms of dealing with the world (like the "outlier" post) touches on NLD and my take on it as it relates to me.

Eventually, within the coming weeks, I'll try to pick out some specific material related to NLD and argue against it here.

Looking at the literature and comparing notes with people (and knowing my own neuropsych evals) leads me to believe I'm kind of right in the middle of the range in terms of how people are affected. My verbal/language skills are on the high end, according to tests, but that doesn't make me unique among NLDers.

ashleigh said...

i would not judje NLD forgive me if i am wrong and you did not actually say anything bad about it i just want to tell you that there is nothing bad about people with NLD i would no i have it!!

brycetphillips said...

Yeah exactly. I always resented this notion I see in the NLD literature that we don't get context or the "big picture". Its like they're saying your kid may sound smart because they read a lot of books and have a lot to say about different topics but he or she is actually just a parrot who doesn't know what any of it means. I am pretty involved in local politics and activism and like you I encounter a lot of people who find my opinions annoying but also a lot of people who value them and no one sees me as a dummy.