Reflecting Back...

As this is to be my last blog entry, I thought I'd take a minute to look back on my volunteering experiences--not just at Passion Works, but also at the Hickory Creek nursing home and Appalachian Behavioral Healthcare.

One thing I have noticed that's common with all three of these places is that the people within them tend to be more at ease than most, despite the increased hardship that may come from their situations. It's very peculiar. For example, one time a patient in ABH dictated me a letter to his wife, with whom he hadn't spoken in months. The letter was simple and unsentimental, beseeching the wife to please call or visit. I remember thinking how if I were in his place, I would probably break down blubbering in the middle of it.

I remember, in the nursing home, seeing a man who didn't speak and needed my full assistance to play Bingo. His only form of communication, really, was smiling when the orderly would poke fun at him. And of course, it was never fake, like many of mine are in similar situations. How anyone, faced with such mental and physical decline, such debilitating disability, could find joy in the smallest of things, befuddles and yet inspires me.

Then there's Noah. I posted a video of Noah Hogan earlier explaining the fossils in his drawing. Noah uses a walker; he has to ask me to scoot him over so I can hold a picture for him to color. Or Paul. Paul's on a respirator and can barely project his voice. Or there's Jason Licht, who draws birds because he wishes to have such freedom of movement, as he's confined to a wheelchair. All of these artists at Passion Works come in at 8:00 every Friday (like the crack of dawn for me) to work and laugh and share stories, caring not about whatever conditions burden their life. In light of this, I think the label "disabled" is misleading: these people have proved to be the most able I have ever met.

As soon as I can, I'll be adding a podcast about the collages artists were making on my final day of volunteering (among other things) to this post. Stay tuned!

EDIT: Here's the podcast.

Good Works

This week I turned my sights to Good Works, a Christian nonprofit. From the site:

Good Works, Inc is a COMMUNITY OF HOPE for those struggling with poverty in rural Appalachia. We provide biblical hospitality through The Timothy House (our shelter for the rural homeless), The Hannah House (our long term residential care-community), job experience programs, creative volunteer service opportunities and community development ministries in the context of Christian Community.

Of particular interest is the org's founder, Keith Wasserman, who apparently converted to Jewish Christianity in his junior year of high school and used and sold drugs from eighth grade to 12th. In his senior year at Ohio University, circa 1980, he opened a homeless shelter out of the basement of his house.

Keith has chosen to be homeless eight different times over the last 15 years, in seven different cities, including my hometown, Akron, Ohio. He writes that he does this partly to have his "compassion renewed." In
Keith poses before a Good Works sign.

Lexington, Kentucky, he slept next to a man who had threatened someone with a knife earlier in the day. And in Charleston, West Virginia, after being rejected by the police and shelter staff for not having proper ID, he found an unlikely friend in a pimp.

"I learned how to listen to the voices from the streets," Keith writes, "the voices of men and women who are survivors in a world in which they see little opportunity."

Keith's organization goes farther than most other Christian ones in that conversion and assimilation into the church community are its primary goals, besides providing food and shelter. From the site:

As we move along the continuum of success toward the other end, we discover it is not enough to provide another human being with food, shelter, jobs, housing, friendship, counseling or help. It is not enough that we invite them into our Christian community and they come. It is not enough that they become a Christian themselves. We have not achieved success until they become a participating and functioning member in a local Christian Community.

 Volunteers prepare to sing a hymn.

In this way, Good Works resembles Alcoholics Anonymous in its marriage of recovery mixed with dependence on a "higher power"--though with the former, the higher power is a little more defined. It raises an interesting question: do the people they help feel as if they have a duty to reciprocate by participating in the Christian community? Could this be a conduit for false religiosity, or is it likely to make the helped believe more? Let me know what you think.

CORRECTION: Keith Wasserman only sold/used drugs from the eighth grade 'til eleventh, not twelfth. This coincided with his conversion to Christianity.

Walk the Walk Raises Awareness of Mental Health Issues

Yesterday I participated in the 2009 Walk the Walk for mental health awareness and support, sponsored by NAMI Athens and The Gathering Place. It was exhausting, to say the least. There were two routes, long and short, both leading to Appalachian Behavioral Healthcare, the local psychiatric hospital. I took the long one, of course. See below for my route.


View Walk the Walk route in a larger map

The walk began as a rally in front of the Athens courthouse at 10:00 a.m., where speakers such as Rep. Debbie Phillips, State Senator Jimmy Stewart, and Mayor Paul Wiehl talked about the plight of mental health reform in Ohio. Phillips mentioned that while we're facing a budget shortfall, people are fighting for mental health issues in the House.

What was of particular interest, though, was something Stewart brought up. In the time since March, he said, funds for alcohol and drug abuse as well as mental health items have been cut more than anything else. We used to be one of the best states in this area, according to NAMI. As a result, Stewart said, many mentally ill are ending up in prison because the system doesn't have the resources to assist them.

In the past Stewart helped push a bill through the Ohio House and Senate that would enable behavioral health boards to allocate more funds to non-Medicaid programs. Unfortunately, Governor Strickland vetoed this bill.

After the speakers spoke, a band made up mostly of music therapy students played as participants assembled on the courthouse steps to pose for a group picture before embarking on the road ahead. The first stop: The Gathering Place. Walkers went through the building, collecting snacks and pamphlets along the way and brandishing signs about mental health awareness.

The long walk encompassed the Ridges and its surrounding nature walk through some woods. Parts of it reminded me of Y tu mama tambien, a movie in which the characters pass roadside graves while driving to some unknown destination--a tinge of the tragic underlying every experience, even the most life-affirming ones. We passed two graveyards and a memorial bench that struck me particularly--a man who was born in 1980 and died this year, who loved chess. "So long, and thanks for all the fish," the memorial read, quoting Douglas Adams' opus The Hitchhiker's Guide to the Galaxy.

I interviewed the acquaintances I made over the course of the walk. One of them, named Lauren Holz, volunteers at The Gathering Place for her Economics of Poverty class. She said she has the most fun playing Euchre with the clients. Holz' little sister has Obsessive-Compulsive Disorder, so she has firsthand experience with mental health issues. She said the OCD's been most severe when Holz is at college, as her sister couldn't control her being there.

Another person with whom I walked was Tim England, whose sister has Attention Deficit Disorder. He said his mom doesn't want to put her on meds because they make her "real down."

Tim Roessler was an interesting fellow. He spoke before the walk, and has been going to The Gathering Place for "six or seven years now," ever since his accident, in which a wall full of freight fell on him, causing one leg to be shorter than the other, among other problems. He became homeless, which brought on a deep depression. TGP helped him, he said: "If you don't have anyplace to go, you get depressed, but if you can mingle, you don't focus on it as much."

Roessler used to be a "world-class athlete"; he said he should have gone pro in baseball and possible football. Instead, he joined the service to fight in Vietnam, and by the time he got back, he was too badly injured to play.

Scott Kreps, the director of TGP, said the Walk was "the best one yet," with about 450 people attending. "It was a great way to start a conversation about mental health and the need for services," he said. When asked about the funds raised, he said "not a huge amount was raise, maybe a couple thousand," and that it was more about awareness about issues and a community event.

"Anytime this many people in the community come together, it shows we do have some human capital here. We have a long way to go, though," he said.

See below for some pictures from the event.

The History of Disability

Volunteering at Passion Works this week, I couldn't think of what to write about. I tried to make up lists of the artists' favorite movies and such, but thought it trivial. After some time reflecting, however, I've decided to examine the history of developmental disability, and disability in general. After breezing through a Wikipedia article, I came to a particularly interesting section:

The segregation of people with developmental disabilities wasn't widely questioned by academics or policy-makers until the 1969 publication of Wolf Wolfensberger's seminal work "The Origin and Nature of Our Institutional Models",^[13] drawing on some of the ideas proposed by SG Howe a hundred years earlier. This book posited that society characterises people with disabilities as deviant, sub-human and burdens of charity, resulting in the adoption of that 'deviant' role. Wolfensberger argued that this dehumanisation, and the segregated institutions that result from it, ignored the potential productive contributions that all people can make to society. He pushed for a shift in policy and practice that recognised the human needs of "retardates" and provided the same basic human rights as for the rest of the population.

The publication of this book may be regarded as the first move towards the widespread adoption of the social model of disability in regard to these types of disabilities, and was the impetus for the development of government strategies for desegregation. Successful lawsuits against governments and an increasing awareness of human rights and self-advocacy also contributed to this process, resulting in the passing in the US of the Civil Rights of Institutionalized Persons Act in 1980.

This change in perception reminded me of one that occurred with homosexuality in the '70s, in which the orientation was removed from the Diagnostic Statistics Manual of Mental Disorders (DSM). What I wonder is, why has it taken society so long to recognize that people are people?

See below for a timeline of significant events when it comes to disability.

Disabilities on Dipity.

Source

As you can see, we've come a long way.

The Gathering Place

Yesterday I visited The Gathering Place, a nonprofit for people with mental illness. It was situated atop a high hill on Congress St., in a house with lofted ceilings. As I sat down to interview the director in his modest second-floor office, he excused himself for having to finish an e-mail. The computer was ancient. As we talked, the telephone rang intermittently, and Scott Kreps, the director, picked it up; people came in and out and one of the clients even sat down and said he'd partake in the interview as well. Scott was the only staff person present. He had a lot on his plate.

I asked Scott what services The Gathering Place provides. He replied that the organization provides a "range of mental health services," from crisis support that has people phoning in dealing with harming themselves or being suicidal, to on-site services to do with medication, family, or increased symptoms from illness, as well as therapeutic support. The Place especially emphasizes peer support.

It also provides "an environment," which includes food, support programs (some social), such as creative writing and poetry, stress management and music therapy. Members of the organization vote on its rules and issues, and half of the board of trustees is clients.

The 317 Board funds the majority of TGP's services. They give $118,321 a year--a "really small" amount, according to Scott, considering it's split among three different agencies (one in Logan and another in McArthur, Ohio). Scott gets paid hourly instead of having a salary.

"As the executive of an agency, to be hourly...it's wild," Scott said.

He said he tries to raise money, but "it's an even greater challenge for community mental health. There's a stigma. If it were a center that provided services for Parkinson's, we'd get a check from Michael J. Fox."

Scott's directed the TGP for four years out of its 33-year stay in Athens. He reemphasized that the main problem facing people with mental illness today is stigma, citing an opinion poll in which people believed those with mental illness were 30% more likely to be "dangerous" than they thought 15 years ago.

Mental illness' relative invisibility is also a problem, according to Scott.

Scott, reclining in his office.

"It's a silent crisis," Scott said, comparing mental illness once again with Parkinson's. "Parkinson's is easier to understand. As it's a physical illness, people want it gone, whereas with mental illness you can't see it."

Finally, if there's one thing Scott could change about TGP, it'd be its financial resources.

"We could buy coffee," said one client who had wandered in. That's a good starting point.

Clients gather around a table to eat and converse.

Sheltered Workshops

While volunteering at Passion Works this week, I got to wondering about sheltered workshops in general, of which Passion Works is one. According to Jim Larson of the Morningside blog, organizations like Passion Works are actually more outdated. From his post:

I am reminded of the passage of the Vocational Rehabilitation Act of 1973. It was the impetus for us to move from therapeutic arts and crafts to industrial based sheltered employment in the 1970’s and 1980’s because of the influx of federal money which propelled the growth of facility based services.

From what I found of other sheltered workshops in the area, Morningside's change was consistent with others. Most, if not all, provide contractual services, as opposed to offering original products like works of art. And the fact that Passion Works originated after the 1970's and 80's shift to contractual work but still based itself on art production is befuddling to say the least. One possible explanation is that it doesn't have the budget that other facilities possess, being located in Appalachia, to perform the large-scale operations that contractual work requires.

A quick glance at the map below will show you that Passion Works also has fewer staff relative to other local sheltered workshops. Green tacks indicate low number of staff, yellow medium and red high. Purple tacks indicate that the number of staff is unknown.

Interestingly, all the workshops in a 45-mile radius from Athens, Ohio seemed to cluster in a "V" formation to the north and south, and the next-nearest one besides Passion Works is in Logan. The latter fact shows that there's not many choices for people with developmental disabilities when it comes to employment in Appalachia. It's mostly either work in the community (doing janitorial work most likely) or don't work at all, and that's a sad fact.


View Sheltered Workshops near Athens in a larger map

Jason Licht

Yesterday I got a chance to interview Jason Licht, featured artist at Passion Works for October. Here's what he had to say:

Jason is hard at work. (image from Passion Works)

Jason's favorite thing to draw is his "one weird take" on a flower, seen on one of the birdhouses Passion Works sells.

This flower is one of Jason's personal faves.

"It started as something to do; now it's showing up everywhere," Jason said. On his work in general, he said, "I figure my job is to try to drag Passion Works into the 21st century, instead of the 1960s."

Jason has worked with the studio for seven years now. He remembers the old building, which was a "glorified storage closet"--literally. It was used as a King Midget car factory beforehand. Jason said there were sometimes seven or more artists crammed into the tiny room, and that there wasn't much room to do anything, and the light hardly worked.

Jason has been labeled Passion Works' "resident philosopher." He says he got it because he "comes up with different ways to put stuff that's out of the norm."

About his art, Jason said he "(wants) to be different. I wanna use the normal colors in an abnormal way." Birds commonly show up in his work, as they symbolize freedom of flight for Jason, which is counterposed to his being in a wheelchair.

"The closest thing I got to where the wheelchair didn't matter was when I climbed a wall," Jason said. He used a special harness at Ping and "did pull-ups" to get to the top. "It was so exhilarating; for one fleeting second the wheelchair didn't matter. I wasn't the guy in the wheelchair, I was the guy who made the climbing wall my bitch," Jason said.

In his spare time, Jason enjoys talking on amateur radio. He's been licensed for 19 years, starting in high school. Surprisingly, he doesn't have a handle, yet he's taken three tests to obtain the highest licensed classification--Amateur Extra. He said you can't talk on every frequency right away, per the FCC, which surprised me--I had a CB radio around sixth grade and would even talk on the emergency channel for fun.

Jason has the highest operator privileges.

Jason had this to say about his job: "For anyone considering getting down (to Passion Works), get your ass down here. Art's born in here."