Overload

I should have seen this coming, because it isn't like this kind of thing never happens to me.

I am totally overloaded and realizing I need to find a new equilibrium/pattern/rhythm to work.

Over the past couple months, I've established a pretty good routine for myself. I have a regular way of checking news, blogs and websites for items relevant to the NDY blog - I also have some back-up topics if nothing comes to mind.

Things have been going so swimmingly well that I decided it was time to expand my repertoire. So, first, I started this blog in addition to the NDY blog.

Me being me, I didn't stop there. At least for awhile, until it became entrenched in my work pattern. That would have been prudent. Sensible. It would have been smart.

Nope. I registered with Facebook. There were very good reasons to do that. Disability activists from all over the world network there. It's also very popular at the moment, so if you want to build an organizational presence, it's a place you should go.

I prepared. I read Facebook for Dummies.

I was not prepared for the reality that is Facebook. It is an informational assault on the senses, with little-understood applications being offered to me, a rapidly building list of friends in my network, etc. It is a flood of data - some of it relevant to my work, some of it interesting, some of it personally important because it concerns friends.

To top it off, last weekend, a time I usually spend doing housework, catch-up and some DVR watching, was spent preparing for the Oscar Protest regarding the humanitarian award given to Jerry Lewis.

I have spent a lot of today floundering through the information overkill, trying to figure out what to write here and at my other blog. Finally, now that the day is nearing an end, I've managed to come up with something, which I hope is a step or two higher than gibberish.

As I said, this is not an unfamiliar place for me to be in. When I was younger, it took a lot less than this to overwhelm me - and I would (in a figurative sense) give up, drown, and sink.

But if you've been through this enough times, eventually you find some ways to get back on your game. A few successes help beat off the drowning feeling (mostly).

No doubt this is something that has to do with that particular grouping of assets and deficits that fall into that broad category known as "nonverbal learning disabilities."

To me, it's "business as usual."

Please stick around, though. I plan to stick with this and enjoy the readers who've visited so far. --Stephen

Outlier

If anyone reading the title for this post is expecting a review of Malcolm Gladwell's latest book, you're about to be disappointed.

This blog probably won't see too many things that current or timely. In this particular case, it's the story of how I came to appreciate the concept on a personal level.

For those unfamiliar with the term, wikipedia has a pretty good - and short - definition for "outlier":

In statistics, an outlier is an observation that is numerically distant from the rest of the data. Statistics derived from data sets that include outliers may be misleading.

Almost 20 years ago, I was a student at SUNY Brockport, nearing the end of my undergraduate coursework, majoring in psychology. One of my classmates was a woman about 13 years younger than me. She had mild cerebral palsy and controlled seizures. Except for the controlled seizures part (I've never had one), some of our motor issues were pretty similar.

Our experiences in public school were radically different. During the time that I was in elementary school, what special ed existed in my city was totally segregated - and almost a guaranteed ticket to a sheltered workshop or day treatment center.

Special ed was more established and better than that by the time my friend got into the system, but she still had to fight an uphill battle to convince everyone that she would - and should - be college bound.

Anyway, we were friends. She approached me one day regarding a final project she was doing for one of her psych classes. The set-up, as I recall, had to do with pressing one button when a control light went on - then having to hit a different button when a different light lit up randomly.

She wanted me to be one of the subjects.

That surprised me. As I understood it at the time, my reaction time was kind of quirky. I was kind of aware that parts of my brain operated at significantly different speeds. A lot of the ones having to do with reacting to surprises were the slower ones.

I objected on the grounds that I would skew the results of her project (not for the first time, I realized that the English language really needs the word "skrew" - a combination of skew and screw - to describe experimental results that are just very very wrong).

She wanted me anyway. She was emphatic and enthusiastic about it.

Cheerful people wear me down. I gave in.

I came in - I was her last subject. She asked me to hang out for awhile after the procedure.

When she came out to meet me, she had her results plotted. She was excited and cheerful.

"Well, I'm not going to use you, but this sure is interesting," she said.

She explained, laying out the graphing of responses. Pointing to a big cluster of dots on the left of the paper, she explained that these were the responses to the "control" light. My responses lagged a little, but still managed to stay within the fringes of the cluster of responses.

Then she pointed to a smaller cluster of dots to the right. She explained these were the responses of most people to the randomly generated light. Then she pointed a couple of inches to a small group of lonely dots.

"These," she said, "are your responses to the random stimulus."

I don't play video games, or any sort of "recreation" that depends on reaction time, coordination, motor skills. But the differences between me and other people seemed small.

And on paper, they were, most of the time.

Except for certain situations, where I become an outlier and skrewed data.

I don't want to give the impression this put me into some kind of funk. I hadn't changed, after all. I'd just been given a snapshot of some processes I was trying to understand myself.

Besides, I was with a persistently and annoyingly cheerful person. One of the most annoying traits of cheerful people is their ability to infect others with their cheerfulness. --Stephen Drake

"Vegetables"

Just a quick search with google yielded these:

Hydrocephalus Story: My Miriam Lynn

My daughter was diagnosed with hydrocephalus when I was about five and a half months pregnant. I was told she wouldn't live past the first few hours and would be a vegetable and would be connected to all the machines.

Innerview: Jodi Lawrence's hope is cure for hydrocephalus

"Justin is a miracle. When he was born, we were told to expect a vegetable," she said of the premature, 1.5-pound baby. "My husband and I decided to research and learn as much as we could, and give him the best life possible. "

Life with hydrocephalus

My life with this hyrdo began 46 years ago. The doctors told my parents that if i lived past 10 years of age i would be a vegetable (ha I'm not a cabbage). Anyway my parents fought for my treatment. the doctor didn't want to insert the shunt until my first birthday but they ended up doing it at 6 months of age.

By "quick," I mean that about ten minutes worth of effort on my part yielded these particular stories of fellow "ex-vegetables" with hydrocephalus. If I wanted to put some more effort into it (and probably will at a later date), I know of several more stories that don't use the "V" word, but include the prediction that the baby with hydrocephalus won't walk, talk, interact or think.

"Vegetable" isn't a word that's in any medical dictionary. Doctors are free to attach any idiosyncratic definition to the word that they see fit.

Personally, what I'm more interested in is are the motives of medical professionals who put this term forward in discussions of the prognosis and options for the newborn in question. These particular stories, even combined with my own "vegetable" story at birth, don't give us a lot to go on in figuring that out.

However, these aren't the only ones that I've come across over the past 15 years. I'd suggest that the term "vegetable" is an opening gambit in which the medical professional wants to move the discussion into one of two areas:

• Storage (e.g. institutional warehousing);
• Disposal (death through withholding or removal of lifesaving measures)

If that hypothesis is correct, it makes these stories - and my own - survivor stories. "Vegetable" is the kind of word that can lead to a formidable body count - if applied to enough people successfully.

More on this in the future. And if anyone out there reading this blog has their own "vegetable" story, I'd love to hear it. --Stephen Drake

Friday the Thirteenth Special: Mutant, Feral Hydrocephalics

In case anyone wonders why I made sure to put some very natural-looking baby pictures up on my blog, today's entry should give one good reason. By a strange coincidence, today is Friday the Thirteenth - and the opening of the newest version of the flick by the same name.

It's a perfect day to share the quaint legend of Melon heads - there are three regions that have legends of monsters by that name, but the Michigan variety is most relevant to this blog. Today, while searching google for items related to hydrocephalus, I found this article on "Melon heads" from plumbot.com:

The melon heads of Michigan are said to reside near the ruins of Felt Mansion in Laketown Township. According to one story, they were originally children with hydrocephalus who lived at the Junction Insane Asylum near Felt Mansion. The story explains that, after enduring physical and emotional abuse, they became feral mutants and were released into the forests surrounding the asylum. The Allegan County Historical Society asserts that the asylum never existed; however, the story has been part of the local folklore for several decades. Laketown Township Manager Al Meshkin told the Holland Sentinel that he had heard the tales as a teenager, noting that his friends referred to the beings as "wobbleheads". Some versions of the legend say that the children once lived in the mansion itself, but later retreated to a system of underground caverns.

Now, to be honest, I have mixed reactions to this. Part of me, who loves movies like Hellboy, thinks this is really really cool and wonders if I can get anyone to photoshop my baby pictures so I look like a feral mutant.

There's another part of me, though, that worries about the impact of making monsters out of people with hydrocephalus. Part of that concern was validated by a short article in the book Weird Michigan.

In Encounter with a Melon Head, Kellie Topp-Bedrosian gives an account of being startled and scared by the appearance of a large-headed man on the grounds of the Felt Mansion, when she was on the grounds at night while in high school. When she told the story to her father, he told her not to return to the place and told her about the Melon heads:

Years ago the Felt family sold the mansion to a seminary and a small insane asylum was built on the grounds. It was then sold to the state of Michigan and the state turned it into a low-security prison. My father told me that the asylum specialized in patients with extra fluid in the brain, causing their heads to swell. After funding for the asylum was cut, most of the patients were "set free." Many of the Melon Heads had already developed an intense hatred for normal-looking people and chose to stay on the grounds away from society, and they built homes out of the tunnels that run under the mansion.

Here's how I see the story: Proper place for kids with hydrocephalus is institution. When the state cut funds and "set them free," these same people (not kids now) shunned society, sticking to the grounds and found tunnels to live in. And would come out occasionally to prey on "normal-looking" people, who they hated. Charming - I wonder how community inclusion of people with disabilities is going in that area of Michigan.

Serious question: how would Topp-Bedrosian, or anyone else terrorized with these stories as a child, react when given the news that their own child had hydrocephalus? --Stephen

This seems appropriate - my first "hydro" talk

About 12 years ago, I constructed, designed and maintained a webpage about hydrocephalus - with my own particular slant on related issues. The site vanished several years ago, along with the account used to host it.

Fortunately, I still have the files and will post most of them here over time.

I figured today would be as good a day as any to pull out a slightly reworked version of my very first speech on this related bunch of topics - given mostly off-the-cuff at a hydrocephalus symposium in NYC. I was invited on-the-spot to join a panel titled consisting of "patients, parents and siblings."

Here are a couple of informational items for context, for things I refer to in the text below. One "interesting" experience was to hear someone with hydrocephalus who was ten years younger than me tell the audience that people of his age were "dinosaurs" in terms of the standard of treatment for hydrocephalus. On a less amusing note, several of the speakers had stories to tell in which doctors used the word "vegetable" to refer to a friend, their child, or themselves. I was the last one to speak. (I've edited out a couple of things because they would act as "spoilers" in terms of things I want to write about here in the near future - but at greater length.)

Here it is:

I wanted to thank everyone here. I wanted to begin by following up on a story related by one of the speakers here. He said that his doctor had told him that people in their twenties were the "dinosaurs" when it comes to living with shunts.

I was born in 1955. (pause) I'll save you all from having to do the math. I'm 39 years old. I'm not sure what that makes me - maybe a trilobite.

You know, this is the first time I've been to a conference like this, in which I've been presented with the technical details and medical history of the shunt I live with. I'm glad I waited this long, so I could handle it. Because, right now, I feel like I'm sitting up here with a head and neck full of antequated hardware ready to fall apart at any moment.

When I was first asked to speak here I was a little taken aback by the title for this panel. I'm not a parent. I am a sibling, but my sister doesn't have hydrocephalus, I do. That left me with "patient". I haven't been a patient related to hydrocephalus for about twenty-nine years now. It's important to note that when a crisis hits, this may be a consuming role for all involved; however, when I look back on the roles I have had on my life, the role of the patient was the least important, and in many ways the most unpleasant.

OK - Going back, I was born in 1955. I developed hydrocephalus as a result of injury from forceps used in a breech delivery. The doctor who delivered me and caused the injury told my parents it would be better if I didn't survive as I would be a "vegetable" if I did. That brings me to another thing I'd like to comment on. The majority of the panelists here have had stories to tell in which some doctor used the word "vegetable". I'd like to suggest that there is something seriously wrong with medical training - the only vegetables I know of grow in the ground - it is not something that describes any human being in any shape or form.

I'd like to make something clear - when the initial physician gave his prognosis, he was wrong on two counts. The first, is, I think, obvious, in that I did not develop any severe disabilities. But he was also wrong in his apparent assumption that a person's quality of life is dependent on cognitive or physical ability.

I guess you'd probably like to get an idea of how my life has gone. Hydrocephalus was apparent within weeks of my birth. They were able to do something along the base of the spine to alleviate the fluid build-up. This held until I was three. At that point, it became obvious that intracranial pressure was building again. That was when I had the ventricular shunt put in. This never really worked very well. I got headaches several 1 to 3 times a day - my parents had to relieve the pressure by massaging the shunt. That's how we all lived until I was ten. At that time, I developed a headache that lasted for two weeks - it turns out I had outgrown the shunt. Due to advances in the shunt technology, they did a replacement instead of a revision. I've had that shunt, with little trouble, ever since.

I developed pretty precociously in some ways. I was an early talker and an early reader. I was behind in walking and general motor development. In some ways, I was fortunate to have been born as early as I was. In the late 1960s and 1970s there was a fair body of professional literature that promoted a curious perspective. Apparently trying to resolve the dilemma presented by the fact that children with significant brain damage were in many cases developing pretty well in spite of that fact. The explanation put forth in the literature was that children with hydrocephalus had verbal and reading skills that fooled people into thinking they were more intelligent than they really were. Anyway, I was spared from that interpretation.

Testing is kind of problematical for people with lifelong neurological involvement. Neuropsychological batteries were developed for people who acquired brain injury as adults, which means sudden losses of function and generally site-specific damage. Those of us who have lifelong neurological involvement more often have disruption of function. Plus, we have no idea how our own neurological functioning departs from what is "normal". As an example - It took me forever to learn to drive. I have to look at what I write in order to avoid mistakes (computers and word processors have been a godsend). I cannot talk and make a sandwich at the same time. But a neuropsych battery fails to reveal any motor problems. The tests call for me to do one thing at a time. I have no trouble with this. I can do one thing at a time just fine. It is trying to do several things at once that is difficult.

Until school, I didn't have a lot of trouble. At that point, though, problems with my organization and motor skills started to get me in trouble. I had a great deal of trouble with printing, and handwriting was really awful to learn. My hand would get confused and write wrong letters. I would know as soon as I made the mistake, because I was an excellent speller. While I always missed words on spelling tests, I was always one of the last to sit down at spelling bees. Teachers never picked up on this discrepancy.

I never had any formal labels, but I had plenty of informal ones. "Lazy" and "unmotivated" were two of them. "Underachiever" was probably the most frequently used one. No matter how many times I wrote and rewrote something, it looked like something put together at the last minute. So I started doing things at the last minute, since it didn't seem to make a difference. Finally, I stopped doing most of my schoolwork. I loved learning. I hated school. I would fixate on certain subjects and read everything I could get my hands on dealing with it. My fixations seldom had anything to do with what I was supposed to be studying.

It seemed fitting to sort of lead off with this - my first public foray into wrestling with these issues in public.

But I promise the next post will be something new and not recycled. --Stephen Drake

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