A Foruitous Song...

I was lecturing on the history of disability today in my "What is Normal" class and we got up through the Middle Ages and to the beginning of institutionalization. After I got home from my daughter's soccer game tonight I was doing the dishes and listening to an old Townes Van Zandt CD. All of a sudden Townes' classic song "The Sanitarium Blues" came on and I was immediately struck by how well he captured the modern predicament of individuals institutionalized for mental illness. Townes' ragged voice and experienced tone only made the song more poignant as I thought back to a lot of the images I'd been showing in class from Christmas in Purgatory (click the link to see some of the images). It was a moment that required me to shut off the water, put down the dish towel and just listen to Townes' poetry.

Townes was in and out of rehab and institutions for much of his life as a result of his addictions, so he definitely knew what he was talking about. It still amazes me that we do this to people in the U.S. and that families choose to do this to their family members. It seems to me that with all the money we're spending on wars and financial bailouts that we could find a little cash to support rehabilitation programs and community based mental health supports for individuals and families. Sometimes I have to wonder what is wrong with this country....then I get depressed thinking about all the people we're failing in the U.S. But, this isn't the place for a post on the things that depress me. I just wanted to share Townes' great song; a song that is borne on Townes' own painful experience. Perhaps that's why the song is so powerful. So, in the interest of sharing, I thought I'd post the lyrics here for your consideration:

The Sanitarium Blues by Townes Van Zandt
(follow this link to hear the song)

The folks, they just can't take no more
Throw you in the back seat, slam the door
No stoppin' as down the road you go
Got no time to lose

Gigantic one way gate ahead
You're thinkin' man I'd as soon be dead
They decided to give you life instead
The sanitarium blues

Big ole nurse all dressed in white
Slaps you on a table in the middle of the night
Then he straps you down real tight
You're wonderin', what'd I do?

They hose you down, make sure you're clean
Wrap you up in hospital green
Shoot you full of Thorazine
The sanitarium blues

Could be TB or maybe a tumor
Eavesdropping on the doctors, listening to the rumors
Can't see your friends, hear the hum of the wheels
Hey my man, you know how it feels
Like the sanitarium blues

Then upon some sunlit day
They figure there's no need for you to stay
They're pretty sure you can't be cured
So they send you on your merry way

You hit the pavement, hang around
Nobody's on the outside to be found
You're just tryin' to stay above the ground
You start to thinkin', what's the use?
The sanitarium blues

Watch this Movie!: WarDance

Okay, I don't usually go out of my way to promote films, but last night my wife and I watched Wardance and I was literally blown away. I pride myself in being pretty tough and standing strong in the face of some pretty disturbing things...I have to in the field I work in...but this film brought tears to my eyes and left me speechless. The cinematography is beautiful and brings to life the beautiful countryside of northern Uganda, but even more compelling are the stories told by the children documented in this movie.

The movie primarily focuses on three children from the Acholi tribe of northern Uganda, a region of Africa that has been subject to terror and violence at the hands of the Lord's Resistance Army, under the guidance of Joseph Kony, for almost 20 years. Over that time the LRA has targeted the children of the Acholi as recruits and sex slaves. The stories told by the children in this movie are devastating and leave you speechless. You see these young kids, some as young as 8 or 9, who have killed people, served as sex slaves, and have seen their parents killed in front of them and yet still they manage to get on with their lives. I was particularly touched by the story of Rose. Maybe it was her beautiful face, or her soft voice, or the calm resolve that she displayed every day, but she left the deepest impression on me. I could listen to her voice for hours...the lilting, melodic phrasing of the Acholi language off her tongue is hypnotizing....

Okay, okay, I know I'm gushing and I know that this doesn't seem to have anything to do with disability...but it does! I watched these kids and about halfway through the movie I said to Lianne: "Why don't these kids seem to display any of the outward signs of PTSD?" Surely, there are the occasional breakdowns and struggles, but in general the kids documented in this film seem to get along just fine as they work through the stresses of the music competition that forms the focus of the film. As I have thought about this issue today, I have come to realize that maybe the PTSD was 1) not shown by the film makers, or 2) not present to the extent it would be in a Western child because what these kids had gone through was the "norm" in their region of the world. Now that's a terribly disturbing thing to say, but because everyone in the school and refugee camp had gone through similar experiences there was a built in support group, but also a tacit expectation that you get on with your life. This got me to thinking further: "Could PTSD also be socially constructed depending upon the societal "norm" where you live?" What do you think?

So, here's my challenge to you: watch the movie and then let me know what you think. Even if you don't want to let me know what you think, WATCH THIS MOVIE! DO IT! TONIGHT!

As an added bonus, much of the music on the soundtrack comes from one of my favorite artists of all time: Geoffrey Oryema (here's his MySpace page). Geoffrey is also an exiled member of the Acholi tribe documented in this film and his music is absolutely transcendent. Just another reason to watch this film...

Here's the trailer:

Creature Discomforts Introduces New Characters: Who is your Favorite?

So, I'm finally getting around to writing on the new Creature Discomforts ads developed by Leonard Cheshire Disability, a large disability service agency that operates throughout the UK. I would imagine from reading the LCD site that they are very similar to the ARC or independent living centers here in the U.S., although their reach and agenda seems to be much broader than just delivering services. They work globally and claim to work with NGO's in 52 different countries and has six regional offices in Asia, Africa, Latin America, and the Caribbean. One of the more impressive campaigns pursued by LCD has been the Creature Discomforts series of PSA's.

I first stumbled across the Creature Discomforts series last fall as I was preparing to teach a new liberal education class at the University of Idaho called "What is Normal Anyway?" The class encompassed an entire year where we explored the construct of normality, especially as it applies to the (mis)construction of ability and disability. One of the first assignments I had the students do was go out and collect media items that portray disability and then we, as a class, would critique the portrayal. One of my students stumbled on this site through her research. After viewing many disempowering or downright stigmatizing portrayals of disability it was refreshing to see the ads on the Creature Discomforts site. As a class we went through all of the ads on the site and discussed the issues presented: access, stigma, etiquette, rights, and even sexuality are covered in these short 30 second PSA's and present a message that counters the dominant discourse about disability being a tragedy or a flaw in the individual.

When I first watched these ads there was an air of familiarity about them that I couldn't quite put my finger on, but after doing some further reading on the Creature Discomforts site I realized that the characters seemed so familiar because the animation was done by the same studio that created "Wallace and Gromit", Chicken Run, and other animated classics. Even though these are short 30 second PSA's they still retain the high production values we have come to expect from Aardman Animation and perhaps even more impressive is the fact that LCD and Aardman Animation went out of their way to hire disabled voice talent for each of the characters. In the U.S. we often see nondisabled actors playing characters with disabilities...like Daniel Day Lewis in My Left Foot, or Cuba Gooding Jr. in Radio, so it's nice to see that even for an animated ad campaign like this where the viewing audience can't tell who the voice talent is, the producers placed a high priority on authenticity and reached out to involve the disabled community in the UK...especially in Cardiff.

So, I'd better wrap up this post, but before I do I guess I should get to the point of the post, but first a little background. LCD did a first run of these Creature Discomforts ads a couple of years ago and they were so popular that they went back to Aardman Animation and asked them to develop a second run with all new characters. They've been releasing a new character every couple of weeks this summer. So I wanted to get my humble readers' opinion on their favorite character(s). Of course, that means all two of you will have to respond to this post...LOL...but seriously, what is your favorite ad? Who's your favorite character?

My favorite character you ask? Well, that's a tricky question because I like a lot of them but I think that Tim the Tortoise is my favorite of the original run of PSA's. There's just something about his voice that vaguely reminds me of my grandfather...and the scenario Tim discusses is really down to earth. Everyone likes candy right? I love his last line here...makes me chuckle every time, although there's a certain element of dark humour to it.

In terms of the new characters I think that the ad with Roxy the Rabbit and Millie the Mouse is the most groundbreaking...therefore it's my favorite. There is still this societal taboo around discussing sexuality, and especially around the sexuality of individuals with disabilities. There is this notion among many people that people with disabilities can't or shouldn't be allowed to be sexual beings. In fact many parents of children with disabilities have a very difficult time with this issue and seek to keep their child from fully developing into an adult by sheltering them from issues of sexuality and attraction. Taken to the extreme this infantilization of disabled people results in phenomena like the Ashley X scandal of last year that further drove a wedge between parents groups and self advocacy organizations. Even the most committed of advocates for disability rights sometimes struggle with the issue of sexuality, because it is the ultimate admission that a person with a disability has a right to engage in the procreative process like anyone else. So, that's why I like Roxy and Millie...they directly address this issue.

Now, we just need to get U.S. networks to air these ads during
primetime...think of the uproar it would cause here. I think it would be great. At least it would get people talking and thinking about how we treat individuals with disabilities.

Kids with Behavior Disorders in U.S. Schools: NY Times Article

This article came through the wires earlier this morning and immediately there were calls on the Disability Research list-serv to remove kids with disabilities from regular schools. There were implications that mainstreaming, or inclusion, had "gone too far". Unable to resist I entered the fray with this response that has generated a significant amount of both support and backlash....since it seems to be so divisive I thought I'd post the link to the article in the NY Times for your general edification and then my response to the article and list-serv comments below. After reading these, what are your thoughts on the issue?

My Response: "So, I have a couple of issues here with the comments made by Jeremy and Dawna on the NY Times article. First of all, there seems to be an assumption in Dawna's comments and in the article that autism and attention deficit disorder are behavioral problems when, in fact, they are merely an expression of neurodiversity. Just because a child has autism or ADD doesn't automatically mean that they will also have behavioral issues. In fact, if students with autism or ADD act out it is generally the result of a classroom or school culture that does not meet their unique needs and does not welcome them. The minute these kids are labeled, teachers, students, and administrators begin treating them as the "other" and I know from personal experience that children are very perceptive and can only stand "othering" for so long before they begin to fight back. We all have a desire to be included and accepted by the group, and children with disabilities are no different.

Second, the notion that we should maybe begin looking at "resegregating" special education or social services in general is a dangerous proposition. The minute we begin segregating on the basis of behavior, it's just a slippery slope away from segregating on the basis of diagnosis and, if taken to the extreme, appearance. Now, I am well aware that "inclusion" and "normalization" schemes are often financially motivated and I know for a fact that for inclusion to be done correctly it takes more funding than is currently allocated to the school system...but the primary problem is teacher training.

I have just completed a large scale survey of teacher training programs in the western U.S. and most regular education teachers are still graduating with little or no training on how to accommodate students with disabilities and diverse students. In fact, our data shows that if regular ed teachers get any training it is on behavior management...which creates a paradox for us in this situation. If the only training regular education teachers are receiving is on how to behaviorally "manage" students with disabilities then you are setting them up for failure in an inclusive environment because the only way they've been taught to deal with students with disabilities is behaviorally, not academically. It's like the old adage: if the only tool in your toolbox is a hammer, then every problem looks like a nail. In our research we gathered data from over 800 teachers and administrators on barriers to inclusion and the number one barrier identified by practicing teachers and administrators was a lack of training on how to modify lessons and create academic accommodations for students with disabilities in the regular education classroom. Thus, we have a lot of teachers running around our schools with hammers, and whacking every kid with a disability on the head because that's all they've been trained to do. They don't know how to academically include these students, therefore the students get upset and frustrated, and eventually act up...finally giving teachers the chance to use the hammers they've been trained to use in our colleges and universities.

Now, resegregation is the easy answer. Just make these kids disappear. Let's not deal with them, let's put them back in closets, padded rooms, and jail cells and that will solve all our problems in schools. Right? Well, I for one, doubt that it will solve the behavior problems in schools...it's always easy to blame the kids with disabilities because they can't stick up for themselves. If the author of this editorial wrote that African-American kids had more behavior problems, or Hispanic kids had more behavior problems and were a danger in our schools then there would be a nationwide call for his resignation and for his head...but since it's kids with disabilities we're talking about it's still okay. That doesn't seem right to me.

Resegregation might be the easy answer, the real solution lies in changing the way our teachers and administrators are prepared. Now they are being prepared to "deal" with students with disabilities...we need to change the system to where they are being prepared to effectively include and accommodate the needs of students with disabilities. There is a big difference, and it's a big job, but at least it's not a reactionary call for outdated institutionalization practices. Haven't we already learned that lesson?"

Disaboom Survey Reveals 52 Percent of Americans Would Rather be Dead Than Disabled - Forbes.com

Disaboom Survey Reveals 52 Percent of Americans Would Rather be Dead Than Disabled - Forbes.com

Check this out! As I read this do you know what surprises me? That the number isn't higher. On the other hand I am not surprised by the fact that rich people were more likely to choose death over disability. It just goes to show how backwards the wealthy in this country are. They seem to think that money will protect them and if it won't they would prefer to die. The ironic thing is that the rich would be the only class of people who could actually afford the treatments and supports necessary to live independently with a severe disability.

The other scary statistic is the one that shows people with college education are more likely to choose death over life with a severe disability. These are educated people who should understand something about the social nature of disability...oh wait, that's right, most people are graduating from college with little to no exposure on disability issues. But, that's why getting disability studies insitutionalized in the U.S. is so important. If there is one thing that disability studies excels at it's showing that disability is largely a matter of perspective. We all live with the delusion that we are invincible, but really life is a process of becoming disabled. Bodies, like cars or computers, wear out over time and we all need to make a choice to either accept this fact or to fight against it. Accepting this fact is the more rational response...fighting against it leads to the conclusion that it would be better to die than live with a disability which, when viewed in light of rational actor theory, is an irrational conclusion.

So, what does it mean that more people are afraid of disability than death? An interesting theoretical puzzle that I'll be mulling over this afternoon....

WTF!: UI spends 14 grand to say goodbye to White - Dnews.com

UI spends 14 grand to say goodbye to White - Dnews.com

Okay, so here's the deal...read to the end of this post for my solemn promise. But before you get there you need to understand that earlier this year we were told by the University administration that we were in dire financial straits and that each department and college needed to give back 5% of their budget to make up for the budget shortfall. In the case of the CDHD where I work, the University decided to take back all of our returned indirect costs that we use to support administrative staff and functions. In the end, this was a much larger chunk than 5% for the CDHD and will have a significant impact on our overall ability to function. So, if the university is in such tough financial straits why do we have $14,000 to spend on sending off President White? Even if it was "unrestricted" dollars it seems that they could have been more wisely spent elsewhere. I could make $14,000 go a real long ways here at the CDHD; in fact the research project I've been working on for the past year has a budget of about $14,000 and in the end the project will have a positive social contribution. What was the positive social contribution of White's farewell party?

I know that the folks quoted in the article don't seem to be worried about the amount spent, but I can tell you for a fact that I can make a video of people saying goodbye for less than $5000...yeah the production values may not be as great as the one the UI had made of Gov. Otter and other state leaders, but it would be close.

And another thing: $3900 to plant a tree! WTF! I'm going to go home tonight and have dinner and then I'm going to plant a tree in the backyard and that will cost me about $15.50 for the food, tree, setup, and everything. So, why does it cost $3900 to plant a tree? That must be some special tree or maybe it was a gold-plated shovel.

Finally, what are you going to do with a $500 vase anyway? I put flowers and dirty things in my vases at home and I think that an old Mason jar really sets off a nice bunch of roses or lily's from the garden...I wouldn't know what to do with a $500 vase. I'd probably sell it and take the cash to buy something useful like clothes for my kids or maybe a new set of wheels for my commuter bike, and a few books with the leftover cash.

I know that I may be stepping on some toes here, but it seems to me that if the UI is in a financial crisis...a crisis that White has done little to alleviate...we should be making every effort to conserve resources and spend them in areas that are truly in need, like building maintenance, technology upgrades, accessibility repairs, student recruitment, faculty incentives, HEALTH BENEFITS (hint, hint) etc.

So finally, here's my solemn promise to all you UI alumni, faculty, students, and staff: If I'm ever a president of UI I will make sure that my send-off costs less than $200. You can get me a t-shirt, take me out to Patty's Kitchen for a burrito, and then have some balloons and beer with the leftover cash. That's all I'd need and that's my solemn promise to all you UI faculty, staff, and students out there. So , how about it? We could even plant a tree if there was some extra money. We could head to PCEI and get a local cultivar and I'd bring my shovel from home and we could plant it somewhere in the arboretum. It would be a BYOF/BYOB affair for all those who really wanted to watch me plant a tree. Sound like a deal?

Disabled Woman Left to Die in NY Hospital

They present this story (click on the link in post title) as thought it's an extraordinary event, unfortunately this kind of stuff happens all the time in psychiatric wards, institutions, sheltered workshops, and ICF-MR's. At least this case got some media coverage....but what are we going to do about it? That's what I want to know.

This just highlights the fact that although we've made remarkable efforts to increase the visibility and rights of individuals with disabilities they are still viewed by the majority of society and by professionals, as seen in the tape, as sub-human and undeserving of simple common courtesy.