Friday, March 29, 2013

Clay Marzo: Dichotomy of the Surfing Savant

The amazing weather we've been having here in Portland (and a tip from the lovely Ann Fullerton) prompted me to write this week's blog about accomplished surfer Clay Marzo. Marzo, a 23-year-old from Maui, has always felt more comfortable in water than on land. He entered his first surf contest when he was only five years old, and by the time he reached 14, Marzo signed on with Quiksilver after sending in a video of his surfing skills to the company's team manager, Strider Wasilewski. He has been described as a prodigy, a genius on the water. However, for most of his life, Marzo has struggled to shine on land in the way he does on water. He is uncomfortable in social situations, fidgety and unfocused, and often comes across as rude and awkward. Clay Marzo, world-class surfer, has Asperger's syndrome.

Marzo, called "The Surfing Savant" by Rolling Stone, wasn't diagnosed with Asperger's syndrome until he was 18 years old. Before then, everyday tasks and basic interactions, like sitting through a family dinner, were an unexplained struggle. When his parents allowed him to be tested for Asperger's at Wasilewski's request, Marzo and his family were actually relieved by the diagnosis. Now they had an explanation. Knowing why he could be wholly focused on surfing while not being able to focus on anything else allowed Marzo to embrace both aspects of his life. He, along with various autism specialists, attribute his talents to Asperger's, noting that his ability to hyper-focus on surfing enables him to excel at it. Wasilewski calls Marzo's Asperger's his challenge and his gift.

While Asperger's is what gives Marzo his unique, all-out, go-for-broke surfing style, it has also kept him from doing what many other professional surfers do, like entering and winning contests. Traveling is often a nightmarish experience for him, and, of course, there are all the social obligations with fans, sponsors, and the press. Marzo often copes with these stresses by pulling out clumps of his hair or by getting high to calm his nerves. When he does compete, though, he amazes onlookers, often scoring perfect tens. His inclination to be in the moment allows Marzo to risk big moves that others wouldn't dare. However, this way of living is also a hinderance, not only to his safety, but also to his ability to win competitions. Although his skills and tricks far surpass many of his competitors', Marzo can get trapped in risking too much and paying the price for it. In one competition, for example, all he needed to score was a six in order to win. This is something he could have easily managed with a few well-executed twists, but always thinking one moment at a time, he went all-out and fell, losing the winning seat.

Since his diagnoses, Marzo has gone to therapy sessions and has made considerable progress in learning how to manage life on land. Still, he is happiest and most comfortable in the water, where he thrives and never fails to push himself and awe spectators.

Had any of you ever heard of Clay Marzo? Can anyone relate? Is anyone else as amazed as I am by this man's surfing? Let's hear your comments!

Friday, March 22, 2013

"My Life": Smoothing the Foster Care Transition

If you picked up a copy of The Oregonian on March 18th, you may have seen an articleregarding Matt Shea, a recent college graduate with Sotos syndrome who grew up in foster care. When he was a senior in high school, Shea participated in the “My Life” program at Portland StateUniversity. My Life is an investigative project conducted by a team of PSU faculty members (including MHKC's Ann Fullerton!) that studies the transition of youths with and without disabilities as they leave the foster care system.

With the help from an almost six-million dollar award from the Eunice Kennedy-Schriver National Institute of Child Health and Human Development (NICHD) and the Institute of Education Science (IES), two related studies will be conducted over a five year period and will involve around 350 people, aged 16-18 years, who receive foster care services through Child Welfare Offices in Multnomah, Clackamas, Washington, and Marion Counties. The investigation involves randomly assigning youths to either an intervention group or a control group. In the intervention group, participants will receive individual coaching and mentoring for a year in addition to lessons in applying problem-solving skills, accomplishment tracking, and connecting and building beneficial relationships with other adults. The idea is to help young people better achieve their goals as they transition out of foster care.

Matt Shea, 23, proudly displays his diploma from OWU.

Project manager and former special education teacher, Lisa McMahon, hopes that her involvement with My Life will allow her to see a difference being made beyond the youths she meets personally. "As a high school teacher," she says, "I was able to impact each student in my class. As a researcher of intervention, I hope to see the day our intervention is used throughout the state." McMahon also expresses that her interest lies in people, especially teens, and their abilities to decide what they want and then work toward achieving those goals with whatever support they deem necessary.

It sounds like an interesting study with some real potential benefits. Teenagers who grow up in foster care tend to face a multitude of challenges as they move into young adulthood, like finding jobs and getting into colleges. Sometimes they even have to cope with homelessness, mental health issues, or single parenthood. The odds of dealing with these troubles increases among teens with disabilities. If the results of these studies are positive—which, according to the pilot study that was conducted, they should be—the transition out of foster care services can be much more successful for many young adults like Matt Shea, who is now back in Portland after graduating from Oklahoma Wesleyan University, a goal he made and achieved with the help of his My Life coach, Alison Turner. Pretty fantastic, isn't it?

Are any of you interested in working with young people, either with or without disabilities? Being a counselor at Mt. Hood Kiwanis Camp seems like the perfect way to gain experience for so many types of careers, especially in social work, counseling, and teaching fields. Lisa McMahon's advice? "Try it out! Find as many experiences as you can to spend a day in these worlds so you can truly feel what it's like. With the side note of being really strong in your self care. Some days are really hard emotionally and you need to be able to get refilled so you can come to work tomorrow with a smile."

In a project like this, would you be more interested on conducting the research or going in as a counselor, working with people like Matt to help them reach their goals?

Friday, March 15, 2013

All Kinds of Minds

It's mid-March already! Sometimes I can't believe how quickly time passes. This week's post is going to be a little shorter than usual in terms of word content, but that's because I would really like everyone to watch the TED Talk below. It's a little long, but it sheds quite a bit of light on the mental processes of people with different types of autism.

The talk is given by Temple Grandin, one of the most prominent adults with autism today. She is a doctor of animal science, a professor at Colorado State University, autism activist, bestselling author, and inventor of the hug box, a device used to calm children with autism. I found her talk particularly interesting and inspiring not only for the message it supplies—the world needs all kinds of minds—but the way in which the message is presented. It's an enlightening look at minds across the autism spectrum as explained by a woman with firsthand experience in the subject. Not only does Grandin give excellent examples of how different brains function—for instance, she compares certain human minds, like her own, to those of animals, who are sensory-based thinkers—but she is also an example herself. So while viewers are listening to her insights, they are also seeing how what she says plays out in real life with real human beings.

So many talks are given by people who have second- or even thirdhand experience with the subject of their discourse. Those talks can be very effective; just because the experience isn't firsthand doesn't necessarily make the information invalid. But something about not only talking about a subject, but actually being the subject allows viewers to get a whole new level of understanding and insight. Therefore, I implore you to take the time to watch this video. It's nice to look at things from different perspectives, right? (That's why I love it when you guys share your stories and experiences. Please continue to do so!)

How do you learn best? I, for one, am a visual-verbal learner and could totally relate to what Grandin said about learning social skills as if she were in a play. Do you guys have any interesting learning techniques?

Friday, March 8, 2013

Google's "Autism" Fix: Good or Bad?

My friends and I used to do it all the time in middle school: type the beginning of a phrase into Google search and see what results Google suggested. We were curious, and often the results were funny and entertaining. But this week, Google has been making a few changes within their auto-complete search function after a group of autism activists blogged about the offensive nature of the search engine in regards to autism.

Last week, if you had typed “Autistic people should” into the Google search engine, the following suggestions would have appeared:
Autistic people should be killed
Autistic people should die
Autistic people should be exterminated
Why autistic people shouldn't have children
Now, however, the results are slightly different. They're milder, perhaps, and certainly less violent. It's a big move for Google, since changing the search results means more than just deleting a word here and there or blocking a phrase from appearing. The computer's algorithm must be altered to encompass a variety of potential search words, so it's a timely process. But in the eyes of many activists and the national group, Autism Speaks, the time taken to make these changes is well spent.

While it is nice to not tempt those curious internet surfers into clicking on suggested searches that could lead to hateful websites, there are a few other sides to this issue. Fifteen-year-old autism activist, Sam Gelfand, believes that Google's adjustment is not necessarily a good thing.

“They’re trying to protect people from hate speech, but it’s almost a form of censorship,” he says. “In my personal opinion, everyone should be able to hear both sides of an issue.” Granted, Google's changes do not prevent users from searching for specific phrases, but giving an altered view of what people commonly search for online is, in a way, dishonest. Don't people have the right to know what is really going on? It may not be pretty, but knowing that these violent phrases are commonly searched can be helpful in the movement to change people's opinions about the developmentally disabled. Hiding the problem is not a solution. Additionally, as Gelfand goes on to suggest, the popularity of these searches can be partially attributed to curious people (like me and my friends back in middle school) who click on the suggestions, increasing their popularity.

Another perspective calls people to consider whether Google's change gives special treatment to people with autism. After all, many other groups of people, like African Americans, Muslims, Jews, men, and women, yield similarly violent and hate-driven search suggestions. So in the fight to accept people as people, not as people with autism and people without, does it make sense to make exceptions?

Or was Google correct in its move to change its auto-complete search suggestion policy? All sides pose compelling arguments. What is your opinion on this? I think it's both interesting and important since Google is such a powerful entity in our culture. Share your thoughts!

Friday, March 1, 2013

Man Fakes Disability for Profit

I recently read an article about a man in Lexington, Kentucky who was charged with two counts of theft by deception after pretending to be mentally disabled in order to increase his panhandling profits, and it got me thinking about a few things. What else is new?

The man, Gary Thompson, claims to make $60,000 to $100,000 a year thanks to people's donations, and he admits that while he does have trouble walking and uses a wheelchair, his mental disability is entirely made up. How does Thompson convince people he has a mental handicap? According to the Lexington Herald-Leader, he uses “slurred, slowed speech, contorting his face and holding one hand close to his body 'as if he doesn't have use of it'.” And if you take a look at the video below, you'll see that he appears to feel no remorse or guilt about his act.

Surely that is offensive enough. First of all, this man has turned people with disabilities into devices for manipulation and profit. Suddenly, they go from being real people with faces and lives and legitimate challenges to being tools, potentially useful archetypes characterized by a series of stereotypical gestures. And it's upsetting. What gives this man the right to capitalize on disability? Moreover, what gives him the right to capitalize on a disability he doesn't even have? Some people don't realize that what is an easy, convenient, and sometimes profitable role for them to slip in and out of at their leisure is actually somebody's life, but that somebody doesn't have the benefit of taking off the mask, of switching roles, when it is convenient. (I think this adds a bit of concreteness to what I was trying to relay in the post a couple weeks back about the film “The Idiots”.)

What may be at least equally offensive is the way the strangers who gave money to Thompson reacted after they found out he was not mentally disabled. Many people were offended themselves because they felt they had been deceived. This made me wonder whether these people would have given Thompson money if he had acted otherwise, and if so, why or why not? Does it make a difference? Should it? I'm curious why, assuming that the donors were giving money out of a genuine desire to help a fellow human in need and not just out of perceived moral obligation, it would make a difference whether that human had any sort of disability or not. Don't get me wrong, I would have been upset were I in their position, too, but I think it would be more out of anger and frustration at Thompson's insolence. Something about their reactions peeves me. There seems to be an implication that people were upset not by the offensive nature of the trick, but that somebody had succeeded in tricking them. They felt “deceived,” not alarmed or angered. Does anybody else get that sense?

Click here to read the original article, and let me know what you think about this. Do you think disabled panhandlers, either mentally or physically, get treated differently? Do you think they should? How do you feel about the way the strangers reacted? I am so curious what people think about this. Do share!