Shock Treatment: A Thing of the Past?

I thought electric shock therapy was a thing of the past, a bizarre—albeit effective, in some cases—treatment for severe depression and bipolar disorder, so I was surprised to find that there is a school in Canton, Massachusetts that still uses electric shock therapy, also called electroconvulsive therapy (ECT). But this school does not use ECT to treat depression or bipolar disorder. Rather, it uses this treatment to address behavioral problems in kids and adults who have developmental disabilities.

Various types of electric therapy have been around as early as the 16^th century, but ECT—the only form of shock therapy used in modern medicine—didn't become widespread in the UK and US until the 1940s and -50s. Today it is estimated that about 1 million people worldwide receive ECT every year, usually in a course of 6–12 treatments administered 2 or 3 times a week.

There is, of course, a lot of controversy regarding the effectiveness and validity of ECT. For one, reports of ECT's effectiveness are only documented in the short term. That is, the treatment may be effective, but only for one to six months, and research psychiatrist Colin A. Ross found that there was no single study that showed a significant difference between real and placebo ECT at one month post-treatment. Furthermore, most ECT research is done with the effectiveness of depression and bipolar disorder treatment, not behavioral problems among the developmentally disabled. So why is ECT being used in that setting?

As is turns out, parents have found ECT to be very helpful in treating their children. Last year, NBC New York published a story about Judge Rotenberg Educational Center, that school in Massachusetts that uses ECT on its students, and explained that while the facility gets a lot of negative feedback in response to its methods, many parents continue to show their support:

“In 2006, the parents of Samantha Shear told NBC New York they were desperate after their daughter couldn’t stop hurting herself by hitting herself in the eyes. The Shear family insists skin shock therapy was a last resort that improved their daughter’s life.
'The thought process is, “we need something severe enough to make this kid stop hurting herself,”' said Marcia Shear. 'And you know something, it worked.'”

However, many people find ECT to be an inhumane, torturous method of treatment. A video of Rotenberg released in 2002 shows a patient, Andre McCollins, tied to a mat, receiving more than 30 electric shocks, each lasting two seconds. In 2006, another student, Antwone Nicholson withdrew from the school after receiving similar treatment. Though she did sign consent forms, Antwone's mother, Evelyn Nicholson, claimed that the extent of the shocking and the potential for abuse were never disclosed.

Now Rotenberg is back in the spotlight. In a legal filing last week, Massachusetts Attorney General Martha Coakley moved to end a court order that has limited the state’s regulatory authority of the Rotenberg center since the 1980s. The state aims to get broader authority over the facility and insists that ECT is an unacceptable method of treatment for individuals with intellectual and developmental disabilities.

Naturally, I hope the state wins. What do you think? Do you have any experience with electroconvulsive therapy?

"The Idiots": An Emotional Conflict

The Portland International Film Festival has been underway for a week now. This is extremely exciting for me, personally, because I finally live in a place with the resources and interest to host such an event. I highly recommend checking it out to those who can. The PIFF is going on until February 23^rd. More information can be found on their website.

But I digress! The arrival of the film festival coupled with my involvement with Mt. Hood Kiwanis Camp got me thinking (again) about the disabled community as represented through film. As time goes on, it seems that the disabled are being more accurately represented in movies, which is great, but my thoughts were recently pulled back to a 1998 film by Danish director Lars von Trier. Von Trier is known for his typically bizarre, sometimes controversial, and often disturbing films. He directed, among others, “Dancer in the Dark,” a film about a young, working class woman who struggles to support herself and her brother as her secret visual impairment rapidly worsens. Like many of his films, “Dancer in the Dark” is emotionally jarring and thought-provoking. But the film I would really like to discuss is von Trier's “Idioterne”, or when translated, “The Idiots”.

The brief synopses of “The Idiots,” supplied by IMDb is as follows:

“The group of people gather at the house in Copenhagen suburb to break all the limitations and to bring out the 'inner idiot' in themselves.”

The term “idiot” comes off as crass and offensive when one learns that the movie is about a group of friends who pretend to be mentally disabled in order to challenge society and liberate themselves. Whether von Trier meant to offend or not (and to whom the offense was aimed), I am not sure, but his film is extremely thought provoking. The film is painfully raw and harsh in many ways, and on the surface it can be seen as a crude and disturbing story that mistreats the disabled. However, it allows the viewer to see the unfortunate reality of many people's reactions to the disabled community.

Steep yourself in cinema and feel your brain explode with ideas.

On the one hand, there is the reaction of the young slackers who act disabled for their own entertainment and treat it as a game, sometimes even as a competition. But below that, there is their interactions with the unaware people around them. In one scene, the group goes from house to house in a nice neighborhood, selling handmade crafts. One person slams the door in their faces, and another begrudgingly hands over some money, apparently out of moral obligation and a desire to get the group to leave her alone. At this point, one of the main characters “turns off” his disability and frustratedly laments the futility of their activity, showing the audience that these people are able to rejoin “normal” society whenever they want, whereas actual members of the disabled community don't have that luxury.

An article written in 1999 by Stefan Steinberg attempts to explain a possible motive behind von Trier's creation of “The Idiots”:

“On the basis of The Idiots, one concludes that [von Trier] is evidently motivated by a dislike, even a disgust for society as it stands. At the same time he is apparently blind to any way of changing society in a meaningful way. He has chosen the well-trodden and fairly threadbare path of individual self-liberation. There is something a bit provincial in all this, but von Trier seems to be espousing the notion, popular during the radicalisation of the 1960s, that mental disorder represents a higher and superior form of perception.”

I'm not sure what to think of this, and I'm worried that I will get little response if I ask you, dear reader, for your opinion, because I don't believe this movie has a widespread audience. If you are brave enough to watch the film, I would love some input. I feel I've not adequately expressed the conflict that comes with watching this movie or why I felt it necessary to share my experience with it. I must warn you, the movie is rather graphic and unconventional, but if you can go into it with an open mind, I think there is a lot that can be taken away from it.

What films have influenced you or changed your perceptions about people, situations, etc? Help me out! Did this gratuitously long post make any sense at all?

“It is impossible to say just what I mean!” - T.S. Eliot

The Season for Loving

Love it, hate it, or don't care either way, Valentine's Day is in less than a week. Advertisements for Hallmark and Zales overwhelm our televisions and fill us with a desire for companionship and nostalgia for the days when class time was spent making and sharing valentines with friends and innocent crushes.

Oh, crushes.

There is something about having a crush that fills one with an almost irrational, though undoubtedly fascinating, sense of hope and lightness that comes with the prospect of finding love. We all get crushes, and it's great. After all, everyone has should have a chance to find love, right?

Unfortunately, there seems to be this perception that it is not normal for the disabled, especially the developmentally disabled, to engage in relationships. It is natural for all people to seek companionship and have sexual desires, so why is there a mental block when it comes to thinking about these basic needs within the disabled community? It's quite common for people with disabilities to form relationships, express their sexuality, and get married, yet many people are uncomfortable with the idea, so it is not talked about as much as it perhaps should be. Were the conversation started, we might find that there is a lot to be learned about love from the disabled community.

Paul and Andrea Annear on their wedding day

In 2006, UK-based periodical, Daily Mail, published a somewhat lengthy but endearing story about the first couple with Downs's Syndrome to get married in the United Kingdom. Paul and Andrea Annear have such a genuine relationship that one can't help but admire. As the article puts it, they “share a love and devotion so raw that it is almost painful to watch. With their simple logic and searing honesty, they enjoy a relationship which perhaps every husband and wife should aspire to.” Yes, they have a disability, but nobody could deny the immense love they have for one another.

"I give him a kiss in the morning when he leaves for work, and I shout after him: 'I love you, Paul.' He says: 'I love you, Andrea,' and I watch him as he walks all the way down the road. I know that some people say we should not have got married, but why not? We love each other very much and we look after each other,” says Andrea. Her husband, Paul, comments that Andrea makes his heart feel full, and he feels like singing and dancing when she is around.

Isn't that how everyone—regardless of ability or disability—is supposed to feel when they're in love?

The internet has become an important tool for people of all abilities who are seeking relationships, but there are some websites dedicated to helping people with disabilities find companions and romance. Sites like Dating4Disabled and DisabledSinglesConnection make it easier for members of the disabled community find love. 

Let me know what you think! Do you have a Valentine this year? What do you think about relationships within the disabled community?

Click here to read Daily Mail's article about the Annears.

Penny for Your Thoughts

This week's blog is a little shorter than usual, but there is something I received that I would like to share with all of you. A friend of mine recently gave out letters to a bunch of people whom he had gotten to know and care about. Some of them, like me, were people he had just met, but others he had known for years. The letter was essentially a request to help him change the world, to change perspectives. In this post, I am going to share a portion of that letter.

I have one favor to ask each of you. I can't force you to do this, nor is there any way for me to know if you actually ever will. However, I will greatly appreciate it if you choose to do this remedial task. I've spent the last ten months trying to save the world, and I really believe I can do it. I believe everyone has the capacity to save the world. However, most of us choose not to do so. I wholeheartedly believe that if everyone did whatever they could to make everyone else happy, then we could have world peace. It seems that we spend so much time making each other miserable. We're all perfect, but we let others tear us down. I really want all of you to believe you're perfect. Don't get too cocky, though, but just don't let the bullies win. If you get the chance to do or say something nice, then do it! If you can take a little time to put a smile on someone else's face, then why not? 

Anyway, the favor: There is a penny in each of your envelopes. I want each of you to take that penny and make a wish. Again, you don't have to do this, but I think it would be nice. You can make a selfish wish—I don't mind. You can wish for world peace. Whatever you want. I just want you guys to believe that your wildest dreams can come true, because you deserve it. Never lose hope.

Make a wish...

So, whether you share my friend's optimism or not, agree or disagree, I think there is some value to be found within his hope for all of us. I mean, really, wouldn't it be nice if we all treated each other respectably? We don't all have to be friends, but it seems reasonable that we should be able to regard one another as beings with value and worth.

I apologize if this post was a bit different or too general, but it's good, I think, to be reminded that we are all part of a human community. We're all part of a natural community, too. The point is, we are all part of something bigger than ourselves, so we have to take care of one another if we are to thrive.

Share the love, everybody!

True Heroism of the Comic Book

Perhaps it's just that I've never noticed before, but seems that comic books and graphic novels have made their way into pop culture, reaching out from their comfortable subculture following and into the mainstream. This is due in part, I think, to the slew of comic-based movies and TV shows that have been released in the past few years. Many of them, of course, are based off of classic stories and heroes who were widely known to begin with, like Batman, the Avengers, and Iron Man. But even lesser known graphic novels and comic book series, like “The Walking Dead” or “Scott Pilgrim vs. the World”, have become extremely accessible to a widespread audience. Though I can't seem to get into the superhero-style comics, I recently joined the comic-reading masses after having read Neil Gaiman's “The Sandman” and John Layman's “Chew” and decided to explore comic books and their heroes in this blog. Being new to comic culture, I had never realized the extent and importance of disability in terms of plot and character development.

Protagonists with disabilities are beginning to show up more frequently in movies and television, but they seem to have been thriving in the comic book genre since the early 1960s. Quite a few comic book characters—big characters, not obscure ones—have faced disability in a variety of forms. For example, both Oracle (previously known as Bat-Girl) and Professor X are heroes with paralysis. Doctor Mid-Nite has been around since the 1940s, and he was the first blind hero, predating Daredevil by more than 20 years. Even so, I still love the idea of the relationship between Daredevil and Echo, a Native American heroine who was originally thought to be mentally disabled but turned out to actually be deaf. I am partial to Echo's story because she had always been deaf, whereas many other characters acquired their disabilities later in life, often after they had already become heroes in some aspect or another.

My girl, Echo!

In 2011, a new comic was released with the hope of not only bringing attention to disability rights and freedoms, but also to ease the tensions between the West and the Muslim world. “The Silver Scorpion” was created by a group of young disability advocates from the US and Syria, all of whom have disabilities of their own. They were asked to create a superhero who depicted everything they wanted to see in a comic book. It was a pretty awesome endeavor, and an important one in terms of both diplomacy and disability activism.

But one might ask why it is important to have superheroes with disabilities. After all, superheroes are...super. They aren't representations of real humans. Den of Geek!, a website for all things geek culture, answers that question fantastically:

“[M]edia affects how we feel about ourselves and people who are different from us. Hawkeye is a perfect example of a superhero with a Disability and why it matters. In 2012, a 4 year old boy began to refuse to wear his hearing aid. He argued with his mother that superheroes don’t wear hearing aids. Well, his mother wrote to Marvel, desperate about what to do. Marvel was wonderful and did the right thing by creating a superhero named Blue Ear who uses a hearing aid. Just like this 4 year old boy. But even better, Marvel pointed out that Hawkeye is Deaf and uses a hearing aid. We hope that this little boy became a Hawkeye fan that day. Though we were disappointed that this was glossed over in The Avengers (2012) it still shows that superheroes matter to all of us. Hawkeye is very capable marksman, fighter and archer. And perhaps for a little Deaf boy, Hawkeye is someone to look up to.”

Well said! So, thank you, comic books, for showing the world the badassery of the disabled community and for giving people of all abilities heroes worth celebrating.

Do you have any favorite comic book heroes? Tell me about them and why they're your favorites!

MLK to ADA: The Progress of Equality

This coming Monday is Martin Luther King, Jr. Day, and for some of us that at least means an extended weekend, a nice day off work or school. But for many Americans, the long weekend is a reminder of the struggle for equality among all people.

Dr. King is known primarily for his non-violent activism that broke down barriers between races, destroyed stereotypes, won him the Nobel Peace Prize, and made him one of the most revered figures in American history. While we still don't see equality for all people, America has come a long way in the past five or six decades in terms of equal rights and equality awareness thanks in part to the civil rights movement and Dr. King's activism during the 1960s. The attention given to racial equality during the '60s helped bring civil rights issues for the disabled into light, and fantastic progress has been made since then.

In a previous blog, I wrote about the Ugly Laws that were enforced throughout the United States. Like many of the Jim Crow laws that were enforced to “protect” white Americans from African American differences, the Ugly Laws were enforced to protect those who could not handle the sight of people with disabilities. But! The good news is that the push for equality, the disability rights movement, eventually led to the signing of the Americans with Disabilities Act, which was heavily influenced by Portland native Richard Pimentel. [Click to read about Pimentel and the Ugly Law.]

According to Arlene Mayerson, the directing attorney of Disability Rights Education and Defense Fund, the ADA adopted many of the strategies of the civil rights movement before it:

"Like the African-Americans who sat in at segregated lunch counters and refused to move to the back of the bus, people with disabilities sat in federal buildings, obstructed the movement of inaccessible buses, and marched through the streets to protest injustice. And like the civil rights movements before it, the disability rights movement sought justice in the courts and in the halls of Congress."

I admire those people. I admire all of the people who came before me to promote equality of all kinds. I thank those who have chipped away the boundaries that separate us based on race, religion, physicality, sex, age, everything. I know I take my rights for granted, but I'm grateful that I'm able to do so. That is, I'm thankful that, because of the fighters before me, I've not had to experience that level of inequality.

That being said, I hope everyone out there will take a moment to think about the progress that has been made and the opportunities to further that progress today and into the future. Love one another, people! You're all beautiful.

“I have decided to stick with love. Hate is too great a burden to bear.” -Dr. Martin Luther King, Jr.

Dogs for the Deaf: Helping More Than the Hearing Impaired

I recently learned (thanks to my grandmother, a former social worker who still has a mind for helping people) about an organization based in southern Oregon called Dogs for the Deaf (DFD). Now, I know I've written about animal therapy, but I feel this is distinctly different. This is not so much animal therapy as it is animal assistance. Plus I want to write about it because it's a specific, local example of an organization that brings humans and furry companions together in a way that is beneficial for both. Who doesn't love that?

Initially, I assumed that the Dogs for the Deaf's goal was to provide the deaf and hard of hearing with hearing dogs to assist them with daily activities. DFD does do this, of course, but the organization goes beyond simply providing canine helpers for the hearing impaired. A quick trip to their website revealed that DFD not only trains hearing dogs, but also provides autism assistance dogs, program assistance dogs, and “career change” dogs. I'll get into the specifics of each type of canine in a bit. The other wonderful aspect of this organization is that not only does it help people with specific needs, but it helps the dogs, too. All of the dogs trained to become animal assistants are rescued from shelters throughout the west coast. DFD's website maintains that every dog has value, and every person should have the opportunity to feel safe and independent. Dogs and applicants are matched up based on the characteristics, needs, and abilities of both the animal and the person to make sure the relationship is as mutually beneficial as possible. Interspecies matchmaking!

Now, a bit about the dogs and their training:

Hearing dogs are trained to essentially be a replacement set of ears for their humans. At home, hearing dogs alert people to various sounds, a doorbell for example, and lead them to the source of the noise. In public, they provide an increased awareness of their humans' surroundings, but no matter where they are, hearing dogs provide companionship.

Autism assistance dogs are trained to increase the safety of children with autism by “acting as anchors”. I think that is meant to be taken literally in that the dogs can keep children away from unsafe environments like traffic. As mentioned in the animal therapy post, dogs can also have a calming effect on children and may improve communication skills and personal relationships.

Program assistance dogs go to work with and assist professionals like physicians, teachers, counselors, and court room advocates and their clients. Here's a little story about a program assistance dog named Nelson:

“Nelson is a two-year-old Black Labrador who came to us from Guide Dogs for the Blind. He had a sensitive trachea and could not become a Guide Dog. Upon arriving at DFD, he rapidly became one of the favorite dogs of everyone with his loving, happy-go-lucky attitude and his desire to please. Nelson entered our Program Assistance Dog training and was matched with Janet V., a teacher of students with special needs. Dogs going into this training must be totally "unflappable" and able to remain totally calm regardless of what is happening around them. That was Nelson! Obviously, Nelson also had to LOVE children, and he did. Janet has nine middle school age students, all of whom have special needs. Nelson accompanies her to school every day. Among other things, Nelson's trainer taught him to "go touch." When he is with the students and one of them is upset or distracted, Nelson goes to the child and touches him/her with his nose to comfort and help refocus the child, enabling the student to continue with the assignment. Janet incorporates Nelson into her lessons, and he helps motivate the students to read, do their assignments, and focus. Nelson is also used as a reward; when a student has done something well, that student is able to spend a few minutes petting and playing with Nelson. Each morning Nelson greets each student, and he is helping to motivate the students to communicate. Nelson will be benefitting students in Janet's classes for many years to come, helping these children to learn, grow, and develop in spite of their special needs.”

Pretty awesome, right? The last category, “career change” dogs, are dogs who are not suited for any of the aforementioned careers, but are happy, healthy, and looking for love. They are dogs who have chosen fun and leisure pet as their career. They just need human companions.

It sounds like a great organization. So great, in fact, that Kiwanis International donated to Dogs for the Deaf, requesting that the donation be used for autism assistance dog training. So what do you think? Canine campers at MHKC? Sounds good to me!