I'm getting too old for this

If I haven't spelled this out before, I have to pay a lot more attention to what my body is doing than most people do. That includes major things like driving, minor things like scooping coffee into the filter in the coffee maker, and potentially disastrous things like walking down the stairs.

When it comes to our basement stairs, I have rules. I go slow. I watch my feet. I have at least one hand free to hold the railing. I pay attention to the act of going walking up or down the stairs and try not to get distracted.

Sunday night, I broke all the rules. We had a minor plumbing disaster - turns out the garbage disposal was loose, which vibrated the heck out of the PVC sink pipes. The sink pipes came apart in two places. Water everywhere.

First, I cleaned up that water on the kitchen floor. Then I called our plumber friend who said he could come out the next day. After that, I went to clear out the cupboard under the sink.

I had the bright idea to put some of the stuff from under the sink on the wall shelf on the cellar stairs. I gathered up a bunch of stuff in both hands and started down the stairs. I made it about four steps down when my feet went out from under me and I slid down - hard - for a few steps. My sneakers were wet and the steps are bare wood - bad combination.

Oddly enough I didn't drop anything. I did bang my left ankle and skinned both my elbows. After setting things on the shelf, I went back up and washed my elbows. They were sore.

I was a little leery of the stairs after that, so I found a box and filled it with the rest of the stuff in the cupboard and stuck it in the back bedroom.

As the evening progressed, I became aware of more aches and pains - took some aspirin and a muscle relaxant and went to bed.

The next morning, my left elbow was causing me lots of trouble. As long as my arm was extended, it wasn't too much of a problem. But the more my arm flexed, the greater the pain - to the point where blowing my nose with two hands was almost impossible. After a great deal of research during the day, I decided the likeliest thing was that the injury had resulted in olecranon bursitis.

You can read the description if you're interested, but it explained the pain and swelling. And I changed the treatment from aspirin to alleve. The elbow started to improve and I can blow my nose again. :-)

So - within the next week or two, I'll be getting some kind of non-slip material for the cellar stairs. And I'll probably be better at following my rules.

The thing is, no is perfect in adhering to a routine or set of rules - me included. Stuff like this happened to me when I was in my twenties and thirties, but I was a lot more flexible then.

It hurts a lot more now. Gotta start getting serious about "Stephen-proofing" the house. --Stephen

Unexpectedly Long Hiatus - Expansions and Contractions of Life

I am mortified that I neglected this blog for so long. My apologies to anyone who had developed an interest in it.

I wish I could promise it won't happen again, but it might, because this blog is one of those "add-ons" in my life - meaning I do it when I have the time, energy, and concentration to write on it after having met the core obligations of my life - family and job, mostly.

The trouble is, I get into really (and uncharacteristically) highly productive periods. I take new things into an already crowded life and manage it all joyfully for awhile - sometimes a long while. Then something gives and I have to retreat to managing my core obligations until I am ready to start expanding my workload again.

It's no easy feat. For one thing, there's the "executive dysfunction" to deal with. Many of us who fall outside of the neurotypical range have trouble managing the minutiae of everyday tasks and obligations - I'm no exception. Rather than going into a long treatise on what that means, I'll share the following song that I originally discovered when my friends at the Turner & Kowalski blog posted it:



So does every line of this song apply to me? No, but it's definitely familiar territory. Periodically, the juggling of the absolute essentials can pretty much occupy all my time and energy.

In the months since I last wrote, we took a nice vacation at home with Diane's (my partner) sister and niece. I've only had to travel out of town once - for which I am very grateful. We've had to deal with Diane coming down with the Swine Flu and get sicker than she's been in maybe 20 years - but we got through that.

We also have a new member of the household. He's a three-legged 11-year-old cat named "Oliver." Long story. If you're on Facebook, you can join his fan page here.

That's all for now. At the very least, I'll try to post some links to some good stuff I've come across over the past few months that are relevant to the topics this blog is supposed to cover. --Stephen

Autube: A conversation with Stephen Drake

Well, if anyone is curious as to what the voice behind the typing sounds like, I am up live on a podcast on Autube.

Autube, funded by the Dan Marino Foundation, is "an issues-driven web channel enabling exchange of ideas for people with autism." The site is designed and operated by Kent Creative. The podcast is an edited version of an interview of me that was conducted by Jon Kent, president of Kent Creative.

A few words about the interview:

• My intonation is uneven and my speech hesitations worse than usual - a result of doing the interview while imitrex and a migraine battling it out in my skull.
• There are a couple of places where I laugh (kind of) and it might seem weird. In at least one of those places - talking about "aversives" - it was more of a nervous "tic" talking about something I hate looking back at, but feel I have a duty to do just that.
• A lot of specific information about media coverage and advocacy groups was edited out of the interview. This is understandable but regrettable. Hence, the quote from a leader of a Canadian "right to die" group equating the length of a girl with cerebral palsy's life with a prison sentence is mentioned. Also missing is a lengthy discussion of the coverage of Katie McCarron's murder - and the role that specific advocacy groups played in promoting a "blame the victim" theme in coverage of her death.
• Finally, this is in audio only. The site is a new one and they are working at providing print transcripts of podcasts.

So, for anyone who is interested, here is a discussion of some of my journey through life and the advocacy work I do now:

A conversation with Stephen Drake (mp3 format)

That's all for now. --Stephen

Minefields, stumbling and explosions

Well, I made it through the conference. But, as the title suggests, I didn't do it without managing to set off a few "mines" of the social variety.

Some of it was unintentional. At a preconference meeting, I have it on good authority that at least one of my contributions came off as interrupting, slightly off-topic and maybe rude. That's me when I'm trying to behave.

I've written a long account of the major events that sparked some explosions in the NDY blog. Here's an excerpt describing a key event I want to discuss here:

For me, things came to a head on the first day when a representative of the LaRouchePAC stepped up to the audience question-and-answer microphone. He read a piece of crap he called “research” that labeled Obama’s health care plan (what we know so far) as a “Nazi plan.” To my disgust and horror, over half the audience broke out into applause over that.

(Note: Below, "Alex" refers to Alex Schadenberg, who is the E.D. of the Canadian-based Euthanasia Prevention Coalition, which organized the conference.)
I took Alex aside and told him that he had no idea what just happened and how bad it was. The LaRouchePAC is one of several entities attached to Lyndon LaRouche, conspiracy enthusiast. Pretty much no one of any political stripe who wants to be taken seriously becomes associated with the man or his group. (BTW, the guy from the PAC got in for free with a “media pass” – probably from his home printer, and then did the un-journalistic move of leaving promotional materials. He also didn’t ask any questions. Maybe this gives you an idea of the ethics – or lack thereof – in how they operate.)

Alex let me take the podium in response. I can’t remember everything I said, or the argument I had with the guy from the PAC. But I knew it wouldn’t be enough, especially with repeated exposure to material that had nothing to do with euthanasia and assisted suicide.

There are a few things I should share here about what went on within my brain and body during this short span.

I don't get panic attacks, but my body can do a good imitation of one in high-stress situations. When I know I am heading into a high-stress situation, I take a beta blocker in advance. That medication dampens the bodies response to stress hormones and adrenalin.

Stupidly, I had not taken one that day.

So, when I went up to Alex, I did so knowing I was risking a full-scale physiological rebellion. In fact, when talking to him and when I went up to the podium, my legs were shaking badly and I was having trouble controlling my breath. Fortunately, it didn't escalate into facial contortions and even worse problems with breathing. I may have looked enraged rather than alarmed and pissed, but I looked in control.

And it was necessary - letting it go would have signalled acceptance or approval, making the work ahead much more difficult. That includes damage control.

As you can read on the NDY blog, I followed up with more of the same the next day, this time with a body becalmed with a beta blocker.

As you might imagine, some in my audience - justifiably - heard what I had to say as a criticism or even attack on them. This is seldom done in the context of a "coalition."

Thing is, I am more likely to go there than most. I understand the power that group dynamics play in the lives of people. I understand a lot of it intellectually. But I don't feel the pull - emotionally - to maintain the appearance of unity, cohesion and solidarity at any cost.

On the one hand, it leaves me freer to see when it's appropriate to break from the group. OTOH, it means I am vulnerable to underestimating the cost of breaking those norms.

Fortunately, I have someone who "gets" those dynamics in a more conventional way. When I lay my case out and Diane says she agrees, then it's always been a good move - or - to be honest - the least bad one.

S'all for now. Gotta go on another longer drive tomorrow. Be back Sunday night and hopefully posting again next week. --Stephen

Gone til next week...

I will be almost totally offline between tomorrow morning and Sunday evening. What email access (if any) will be limited.

I have to go to a conference - one of my least favorite parts of my job. To make it worse, the day before the conference involves a strategy meeting.

Great. Sitting at a table of people with smooth social skills trying to get a word in edgewise.

It's not that I can't do it. I can. And I'll probably come across as rude when I interact in a group situation (I usually do). But fortunately, I'm an invited speaker and I'm entitled to speak up - I just can't seem to do it as smoothly and ingratiatingly as the NTs dominating the group.

It used to be worse. When I was a grad student, I was attended regular department meetings. I seldom said a word. After the meetings, I'd usually reflect on some issues that were discussed and finally was asked by someone why I didn't bring those reflections into the meetings themselves - while the meeting was still going on.

What I told the colleague was that I was totally clueless as to the signals others were following to know how and when to break smoothly into a free flowing, unstructured meeting. The few times I'd tried it, it was obvious that my own attempts to break in came across as rude somehow.

To my great surprise, I was accommodated without asking. Meetings were then conducted through turn-taking, with people signalling they wanted to speak. It made life much easier as far as the meetings.

In a gathering like this, it's easier. Fellow participants allegedly want my input - so I'm expected to speak and they have to act like they want me to. (wink)

And I don't worry about being being perceived as rude, as long as I don't set out to be that way. As an activist, it's not that bad if people are a little concerned about how badly you'll depart from an atmosphere of civility, solidarity and cohesion.

It will be exhausting, but necessary work. I just wish it didn't feel like the social equivalent of trying to tiptoe my way through a minefield. (to understand that metaphor fully, you should know that my balance is bad enough that I would flunk the standard field sobriety test. Tiptoeing through a minefield is a very very troubling metaphor to me) --Stephen

A Crash Course in Neurodiversity

I've been kind of taking it for granted that most people who seek out this blog know what the heck "neurodiversity" is. Lately, I've been thinking that is a faulty assumption on my part. Luckily, there are two very recent items I can point people two that can give folks a basic grasp of the concept of neurodiversity.

First, I want to point you to this week's edition of Newsweek, featuring my friend and colleague, Ari Ne'eman. Ari is a founder and president of the Autistic Self Advocacy Network (ASAN). Here is an excerpt from the article Erasing Autism by Claudia Kalb:

Ne'eman is officially studying political science at the University of Maryland, Baltimore County, but he also runs the Autistic Self-Advocacy Network, a nonprofit he founded in 2006, the year after he graduated from high school. The task he has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a medical mystery that needs solving, he argues. It's a disability, yes, but it's also a different way of being, and "neurodiversity" should be accepted by society. Autistic people (he prefers this wording to "people with autism," a term many parents use, because he considers the condition intrinsic to a person's makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. "We're having a nation-al conversation about autism without the voices of people who should be at the center of that conversation," he says.

Read the rest of the article. It's worth your time and effort.

Meanwhile, on another continent, my friend Kev Leitch has written a FAQ on Neurodiversity. Kev is a parent of a child with autism. Like many of my contacts in the autism community, we met through the shared experience of tragedy and outrage over the death of Katie McCarron. As Kev's disclaimer clearly states, there are other descriptions of neurodiversity and he doesn't mean this to be the last word. But it's a good place for beginners (and a good read for the rest of us, too).

Excerpt:

Proviso: I am not a spokesperson for any other person and/or group. The term ‘neurodiversity’ did not originate with me. What follows is my personal opinion and what I believe the concept of neurodiversity represents. I believe I voice opinions common to many in the neurodiversity group but I may well be wrong. Sometimes I refer to ‘we’ and sometimes ‘I’. When I refer to ‘we’ I think I am repeating the consensus of neurodiversitiy opinion but bear in mind I could well be wrong.

1) Neurodiversity proponents are anti-parent.

False. I’m a parent. I’m parent to 3 kids of whom two are NT and one is autistic. I’ve never felt anyone in the ‘neurodiversity crowd’ is anti me. Kathleen Seidel is a parent. Camille Clark is a parent. Anne Bevington is a parent.

Read more: "Autism Blog - A Neurodiversity FAQ « Left Brain/Right Brain"

That's all for today. --Stephen

My take on the "cure" debate

I figure that most people who check out this blog are familiar with the conflict between the neurodiversity community (I count myself as a member) and the "cure" crowd.

"Curebies," as they are sometimes referred tend to see "autism" as something that "stole their kid from them," had a single identifiable cause, and (if we only work, spend and wish hard enough) can be "cured" - leaving a "normal" kid in place of the kid with autism. Jenny McCarthy, who was hard to avoid on the talk show network last month, is a prime example of a "curebie."

What do neurodiversity advocates want? Well, here's a brief description from the Autistic Self Advocacy Network (ASAN):

ASAN was created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about persons on the autism spectrum. Our activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research and the development of autistic cultural activities and other opportunities for autistic people to engage with others on the spectrum.

ASAN initiatives include the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), an active Speaker's Bureau and advocacy in support of autism and disability-related issues such as de-institutionalization and community living supports, educational opportunity and inclusion, employment supports and other initiatives at both state and federal levels.

Notice that there's nothing about "curing" autism in terms of their advocacy efforts.

So what's my take on "cures?"

I think that the pro-cure vs. anti-cure description promoted by cure enthusiasts invites all to ask the wrong questions.

Stepping aside from autism for a bit, let's look at two other famous people pitching for "cures."

Jerry Lewis has spent decades pitching for a "cure" for muscular dystrophy and related neuromuscular conditions (my partner has one of those other conditions). A moment of critical thinking on the part of the public is that any "cure" can only stop a progressive condition where it is - it can't replace lost muscle or effect a change that will help a 20-year-old with Duchenne muscular dystrophy walk. It can only prevent disability of any kind if the cure is administered soon after onset.

Similarly, Christopher Reeve popularized spinal cord research with the promise that he would walk again. Spinal cord injury research is important and promising. It may someday restore some movement and sensation to people to people long affected by their disability. But the only people it will prevent disability in are the newly injured. The idea that any cure will counter the bone loss and muscle atrophy of a person who has spent years without use of their legs was - and still is - a fantasy.

So how about autism and other neurological conditions?

Interestingly, I have a neurological condition with an identifiable cause.

I developed hydrocephalus within my first few months as a result of birth-related injuries.

Left untreated, hydrocephalus will result in progressive physical and cognitive disability - and probably an early death.

So I have this tube in my head that was inserted through the right side of my brain and goes into the ventricles - it drains fluid from the brain down into a chamber in my heart.

So - further disability was halted and I've gotten to live a pretty long and enjoyable life by the most important standards I know - my own.

It doesn't mean that I don't have disabilities. I am a veritable smorgasbord of neurological "soft signs."

So how do I translate that when it comes to autism? Like this:

The brain is an incredibly complex and interconnected system. Whatever thing or things develop differently in the brain of autistic persons don't operate in isolation. There's evidence in both autism and in brain injured people that the brain will reorganize itself and work in radically different ways than originally designed in its efforts to make up for the injury and/or divergent development.

What does this mean in terms of "cure"? To me, it means that if a single element or managable set of them can be isolated, a "cure" can only operate as such if it happens fairly early in the process.

I don't see any way - given the plasticity and compensatory mechanisms that have probably developed in the brain - that you can "flick a switch" and have a suddenly "normal" adult/adolescent/older child with autism.

So, for me, it's not a matter of being "anti-cure" as much as it is a matter of tilting against windmills. And I should explain that to me, there is nothing admirable about tilting against windmills. Don Quixote thought he was fighting giants, which would be admirable. There is no point in fighting windmills. Unlike many people, I see nothing romantic about the story - just a sad parable about wasting your energy on the wrong target.

And even if you could alter the brain that radically, would the kid or adult after the "cure" be the same one as the one who previously inhabited the body?

I don't have an answer for that last one. --Stephen Drake

PS - If anyone is curious about what sparked this sudden venture into the world of neurodiversity and the issue of "cures," check out today's entry on the NDY blog.

The happy misinterpretation of successful coping strategies - or "How I Met My Partner"

The thing about developing useful coping strategies is not only can they get you through difficult situations, they can even - in some cases - be wildly successful.

In fact, part of the reason I ended up with the woman I've spent my life with for about 12 years now is that she completely misinterpreted my motives for doing something when she first met me. That made a huge favorable first impression that I haven't managed to erode entirely - yet.

I'll have to back up a bit. Back in 1996, I received an email alert about this new organization named Not Dead Yet, a disability rights group devoted to fighting legalization of assisted suicide and euthanasia. I won't bore anyone here with the story of my own growing fascination at the time with what I perceived as a "better dead than disabled" theme in pro-"right to die" rhetoric, but I was excited about this group since its reasons for opposing these policies were the same as mine - secular and based in a disability rights perspective.

The group had planned its first protest action in Michigan. The "targets" were a bioethics conference and Jack Kevorkian's house. As a grad student, I didn't have much money, but I did have a friend in the area who found another friend who allowed me to stay at her apartment for the three days I would be there.

Underneath my excitement was a fair amount of anxiety. I am a blob - a reclusive, unsuccessful schmoozer in a large group of strangers. The desire to make connections and the fear of having it all fall flat because I'm so bad at these situations always contend with each other.

Fortunately, I've learned to look for opportunities that can structure my interactions in a group like that. Find a role or job that gives me something to do rather than stay in the corner or try to find something that resembles ice-breakers in the way of conversation.

As someone who has trouble with keeping to a schedule, I compensated in the usual way and was the first person to arrive at the protest action on the first day. The person I later learned was Diane was the second person.

I asked her if there was anything I could do. She asked if I would sell tshirts. I jumped at the opportunity and spent the morning meeting people, taking their money and picking out tshirts for them, with little bits of conversation flowing the whole time.

I did a couple other things during the protest days that helped establish myself as someone who was generally bright and helpful.

But I learned later, that as far as Diane was concerned, it was that first day with the tshirts that made such a great impression on her. (We did a delicate dance on the phone in the month following the protest - political turning to personal gradually)

After we ended up together, she told me that the first thing that drew her attention was my generosity. I helped with the tshirts. I laughed when she told me and explained the entirely self-serving nature of volunteering to do that. At the time, she wasn't sure what to make of that.

Gradually, she's come to accept that really is the truth. She's seen me kind of wander around aimlessly in enough social gatherings to see that I really appreciate some kind of facilitation.

But it worked out well enough, as far as I'm concerned. And Diane says she's pretty OK with how it worked out as well. --Stephen

My take on "Autism Awareness Month"

I have a feeling that apologies for neglect may become a regular feature here. I won't bore folks with the details this time, but I've been buried when I haven't been sick (sick taking up a couple of my days).

I do have something to share today. Nonverbal learning disabilities are widely regarded as falling somewhere in the general category of "autism spectrum disorder." (I prefer the terms "cousin" or "AC" myself and have a story about that I'll share in the future.)

In deference to that relationship, and to a general concern about the general promotion of useful disability advocacy, I wrote my first blog post for the Center for Disability Rights, which is where Not Dead Yet (NDY) headquarters in now located. Below is the link and the intro paragraphs to my primer on "Autism Awareness Week."

Autism Awareness Month

Most people in the disability community are aware that April 2nd is Autism Awareness Day. If you’ve noticed that there’s still a heavy amount of autism coverage in the media, it’s because April has now been delegated Autism Awareness Month.

Autism Awareness Month is a good opportunity to talk about some of the problems, particularly the problems that are actually promoted in the name of “autism awareness.” These problems make many people, including myself, dread the month more than I dread the Jerry Lewis/MDA Telethon, which lasts a mere 24 hours.

The disability community has long criticized the Telethon for its emphasis on a “cure” as the most pressing need for people with disabilities. To promote that agenda, people with disabilities are portrayed as objects of pity. Those portrayals act as additional barriers to the respect, inclusion and accommodations for which people with disabilities advocate.

Please read the rest. I'll be back as soon as time, schedule and energy allow. --Stephen

After 17 Years, Richard Lapointe Has a Win in Court

I'm guessing that most people who read this blog aren't familiar with Richard Lapointe. It's not surprising, since he's been incarcerated for about 17 years, convicted of the rape and murder of his wife's grandmother.

(the picture on the upper left hand side of this post is of Richard Lapointe on the left and Bob Perske on the right. Bob Perske was the first person I who told me about Richard Lapointe's legal battle, over thirteen years ago. Bob has been the most constant of the many people fighting for Lapointe.)

Richard has Dandy-Walker syndrome and hydrocephalus. He's physically clumsy and socially awkward. He is also the person who called the police to ask them to check on the grandmother, who hadn't answered the door when he knocked.

He was initially questioned and dismissed as a suspect. For two years, the police thought they had a good idea who did commit the crime - someone with a violent history consistent with the crime, but whose whereabouts was unknown. When that person did surface, it turned out his blood type didn't match the physical evidence at the scene.

With the case now two years worth of "cold," the police refocused on Lapointe. They interrogated him for 9 1/2 hours, sending him home in the early morning hours - after he'd signed three confessions. Only after he returned from work the next day did they arrest him. He's been in some jail or other ever since.

Throughout the years, various appeals have been put forth on his behalf. Two of the main arguments are that he had incompetent/inadequate legal representation. The other part of the appeal rests mainly on the - now upheld - claim that the prosecutors suppressed exculpatory evidence.

Here is an excerpt from a news story just out on the Hartford Courant:

The state Appellate Court ruled today that a Superior Court judge was wrong to dismiss Richard Lapointe's 2007 petition for a retrial, a decision that could get Lapointe a new trial in the 22-year-old murder case.

Lapointe was convicted in 1992 for the rape, stabbing and murder of his then-wife's grandmother, Bernice Martin, 88, of Manchester. He is serving a life term without the possibility of parole.

For years, many have questioned whether police fingered the right suspect, arguing that Lapointe, who has diminished mental capacity, was physically and mentally unable to commit the crime.

Lapointe's supporters and a lawyer from a national group that represents those it believes are wrongfully convicted, have pushed for a new trial for Lapointe, who has spent the past 17 years at MacDougall -- Walker Correctional Institution in Suffield.

The lawyer, Paul Casteleiro of New Jersey, represented Lapointe in a hearing for a new trial in July 2007. During the hearing, Casteleiro argued that his client, now 63, deserved a new trial on the grounds that his public defenders in 1989 did not provide him with adequate representation and that his lawyer, in a bid for a new trial in 2000, was ineffective.

For more information on the long history of the legal battles waged on behalf of Richard Lapointe, please check out the Friends of Richard Lapointe website.

More information as I get it. And I will try not to let so much time go between posts this time. Work and life have a way of eating up all of my time and energy. --Stephen

A little catch-up - and a little about the writing process

For anyone who's interested, I was quoted in a story in yesterday's edition of the NY Times. It's about the "story of the week" (at least in the NDY arena) - the arrests/investigations of the Final Exit Network members.

Link to story. My quote is on the second page about halfway down.

I'm hoping to have a video of a recent appearance on Fox News up soon. It will be useful in talking about just what it takes for me to prepare for those things.

I find that two things have really enhanced my ability to write.

1. The format and context of the blog as a medium;
2. The extensive material available to my searches on google.

See, I mostly don't have a problem trying to think of something I want to write about. I don't lack for things I wish to include in commentary or a critique.

My problem - usually - is seeing way too many valid angles to attack an issue from and too many important points to make. Plus, some of those angles and points might not be readily apparent to readers without a lot of explaining.

My mental processes are wildly associative. While in grad school, I was brainstorming with a classmate for an upcoming presentation on augmentative and alternative communication. I got on a roll and probably started talking for about ten minutes until I finally ended up talking about neanderthals and theories that they used sign language instead of speech.

At that point, my friend reeled me in, pointing out that this was a 30 minute presentation and there weren't going to be too many people in the audience dealing with neanderthals.

Point taken.

So, I have learned - mostly successfully - to narrow my points and approaches when writing. That means an enormous amount of time gets spent deciding which of my fabulous insights get jettisoned, changing my mind a few times and then gritting my teeth and writing the damn thing.

Yesterday's NDY post was pretty succesful in that way, I think. I stuck to one offhand reference to American humorist Will Rogers and focused on Irving Janis's theory of "groupthink."

Today, I had the pleasure of digging out some old "dirt" on some of the current (and unarrested) spokespersons for the Final Exit Network. They both have a nasty history with defending the killing of children with disabilities.

This is why I'm grateful to google. In the past, I'd have gone nuts trying to figure out where I'd read the things I'd remembered. Even if I saved hard copies of the material I thought of, they would undoubtedly be lost if they're more than a year old.

Google is wonderful. Ten minutes and all the old archived material was there for me to use, link and quote.

I'm not sure what I would have done in a world without computers and the internet.

S'all for now. --Stephen

Speed Bump of the Day - Chaos in the Workplace

It looks like today is a wash-out, except for today's blog here. The organization that donates office space to NDY is a growing one - and today they initiated a massive office reorganization.

In reality, that meant that I spent the morning not sure of when I'd have to shut my computer down so it could be moved to my new space along with my phone. People were putting office furniture together behind me. A new person came in, anxious to take up her place at my desk.

Things finally got moved around 2:00 pm. Other distractions started then, such as the IT people coming and a trying to problem-solve a way to wire new ethernet connections into the office next to the one I now occupy.

I know this wasn't an easy kind of environment for anyone to work in, but it's pretty near impossible for me. When I do my posts on the other blog, I usually have to sort through at least a dozen approaches to whatever I'm commenting on in order to put together something that is meaningful, readable and coherent. I'm successful at this most of the time and I do it almost every day. Today was not that day.

At one point, I thought about yelling and running wildly from the building, but thought that probably isn't the type of inservice I'd like to do on neurodiversity. (smile)

It's all over now, but I don't have nearly enough time to organize my thoughts and get them put down in a way that's acceptable to me.

That doesn't mean I'll just sit here and stare out the window, although that holds a certain appeal. I have a few email messages that need answering -- less planning and organizing involved, and I can still have managed to have responded in a timely manner.

I might write about my experiences with writing in the future. Some of it's relevant to part of what Terri wrote in her own blog entry that I linked to the other day.

Until the next time... --Stephen Drake

Blog Recommendation: Barriers, Bridges and Books on "NVLD and Us"

Today I checked the blog Barriers, Bridges and Books and found two surprises waiting for me.

First, she gave a nice shout out to this blog and to the NDY blog.

Second, the topic of the day was "Non Verbal Learning Disorder."

As you might have noted, the terminology she uses is a little different than the one I used. Both "disorder" and "disability" get used. Not even the acronym is standardized yet - both NVLD and NLD are widely used.

It doesn't matter, though. Whatever variation of the term we use, we're referring to that same general pattern of strengths and relative weaknesses on tests that purport to measure intelligence - sometimes supplemented by other diagnostic tools cherished by neuropsychologists and school psychologists.

It's an "overcoming" story, but not in the sense we generally encounter in the disability community. It's a terrific "overcoming" story about her successful struggle to move past the incredibly negative "prognosis" that came with the news that her son had nonverbal learning disorders.

Sometime soon I'll be adding a blogroll to this site, and Barriers, Bridges and Books will be on it. Terri is a dedicated activist/advocate here in Rochester, NY. And she's a very good writer. Take it from someone who reads a lot.

So - especially if you're a parent of someone with NLD/NVLD, please read the following blog entry today for a healthy reality check:

Non Verbal Learning Disorder and Us

I might even revisit this entry in the future to share some of my own reactions, but I'm strapped for time today. --Stephen

Speed bump or road block?

In my last post, I used a tsunami metaphor to describe what life was like at the time. Things have changed a little since then.

So, as a self-appointed champion of mixed and mangled metaphors (not to mention alliteration), I'm going to talk about speed bumps vs. road blocks.

On Tuesday night, my partner left to go to DC with 50 other activists from the Center for Disability Rights. I slept just fine that night and maintained my hyperfocus throughout Wednesday.

After that, complications arose. The time of Diane's return was uncertain. It would be anywhere between midnight and just about any time thereafter. Being able to pick her up in that kind of scenario takes some planning on my part. I can't just sleep, get a wake-up call and hop in the car. As an additional complication, I try to regulate my sleeping schedule to keep migraine occurrences down.

I have to wait at least two hours after sleeping before my reflexes and motor control have settled down to the point where driving is a safe activity.

Unfortunately, I was unsuccessful in getting a nap in the early evening, managing no more than about 30 minutes of snooze time. At that point, it was about 10:30 pm.

At that point, I didn't dare to try any more sleep. At about 11 pm, I got a call saying that - if they made good time - they might be at CDR by 1 am.

Their eventual arrival was at about 3:00 am. By the time I picked Diane up, got home, helped her with her stuff and settled down for sleep, it was 5:00 am. I fell asleep pretty quickly, but woke up at 9:00 am.

I was functional - for shopping, reading, eating and light cleaning - but not much good for much else.

Reaching this point was inevitable. The question remained whether it was going to be a temporary speed bump, with me resuming my previous momentum, or a total roadblock - with who knows how long to struggle toward productivity again.

The fact that I'm writing this post suggests yesterday was just a speed bump after all, with last night's sleep doing what was needed to get me to resume course.

Wish me luck. --Stephen

Hyperload vs. Overload

First, my apologies for people who have checked this blog for the long lag between posts. My last post dealt with overload and the impairment of function that goes with it.

Why am I back and writing? My load hasn't decreased - it's increased.

Last week, a national story broke out that has put Not Dead Yet in the middle of media coverage - quoted in AP stories, the Atlanta Journal-Constitution, and Time Magazine. If you're curious about the story and what my role has been in the coverage, you can check out the Not Dead Yet blog and read the posts for the last week. And there'll be more to come. A New York Times reporter called yesterday. There was an appearance on Fox News, but I'll probably write about that separately in a little while.

On top of reading the press coverage, gathering the facts of the national story, giving interviews to the press, I've been engaging in other related activities. I've been talking and writing with people who wanted to write letters to the editor. Registering a complaint about accuracy with the secretary of a senior editor of a national newsweekly. Answering and/or deleting hate mail. Working with Georgia activists (the current center of the national story) who want to organize a presence and response there.

All of this came at a time when I was already in a state of overload. Instead of making it worse, a mental shift occurred, where I am focused, calm, amazingly organized, and able to function on just about any amount of sleep.

I think I've moved from "overload" to what I have decided to call "hyperload." It's a state where the tasks and demands are so overwhelming and important a sort of Zen-like presence takes hold of my brain (OK - it's a Zen-like presence given to muttering obscenities).

Metaphorically, it feels like riding a tsunami (yeah, I've seen those annoying commercials too). Moving fast, in control.

For now.

Sooner or later, this unnatural state will end because it can't be sustained any longer or the demands settle down. At that point, I'll be in for at least a day or two of brain-freeze. I'm crossing my fingers that a migraine isn't part of the payment.

For now, though, it feels good and it's great for advocacy. And I'll no doubt be back to posting here more as well. --Stephen

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