Saturday, June 29, 2013

Smorgasbord Saturday

If you only have time to read one piece today, I highly recommend you take a look at the Tammy Duckworth story. This week made me proud to live in a country where young girls are growing up with the phenomenal examples of women like Ruth Bader Ginsburg, Wendy Davis, Edie Windsor and Tammy Duckworth.

Wednesday, June 26, 2013

Musings On Fiftieth Anniversaries

In what may go down as the most action-packed news week of 2013, the country was witness to the gutting of the historic Civil Rights Act by the United States Supreme Court, the heroic filibuster by Wendy Davis of a restrictive abortion bill in the Texas legislature that led to its defeat, the country wondered where in the world the man is who leaked classified material that revealed a domestic spying program, likely decisions on the constitutionality of DOMA and marriage equality, and what looks to be the passage of immigration reform in the United States Senate.

As I think about the implications of all of these events, it is not lost on me the date on which today's immigration reform vote falls. Fifty years ago President Kennedy stood at the Brandenburg Gate and delivered a speech primarily on the relationship between the East and West with the backdrop of the oppressive Berlin Wall. By announcing that all free men were citizens of Berlin, Kennedy challenged the very heart of Cold War policy that erected a wall in the German city and decried any form of government that would do such a thing. Fifty years later and his country is about to vote on legislation that would further strengthen the wall to our southern border, preventing those who wish to make a new life here from entering. Not only do we have a fence separating our soil from that of our neighbor, we are essentially voting to fortify that fence not just in physical structure itself, but in the existence of 20,000 to 40,000 border patrol agents over the next decade. The irony of this is palpable.

The month of June, in fact just under twenty-four hours from June 11th to the 12th in 1963, saw the troubled, segregationist stand of Governor George Wallace at the University of Alabama, a speech committing himself and his administration to civil rights by Kennedy and the assassination of Medgar Evers. This is not an insignificant anniversary, either. Considering the Court's ruling against Section 5 of the Voting Rights Act and what could have been the final nail in the coffin of affirmative action, these issues are not behind us. Meanwhile, a man goes on trial in Florida for killing a young black teen who posed no threat to him, but happened to look as if he might be trouble. Fifty years ago, men like Medgar Evers, Kennedy and John Lewis certainly could sense change coming. But as Congressman Lewis noted yesterday in his reaction to the Voting Rights Act ruling, he never thought he'd live to see the day when any branch of our government determined that historic legislation no longer necessary or constitutional.

As the world awaits a sighting of Edward J. Snowden, the now infamous leaker of classified material that revealed a domestic spy program carried out by the NSA, we are reminded of the risks once taken to release the Pentagon Papers. That "leaker" is now heralded as a hero. He is as much a reason for the end to the Vietnam War as any single individual in the country. That leak may have happened in the time period officially known as the Cold War, but we know from the last few days that we are experiencing a diplomatic chill today that is similar. We are seeing those old Cold War sentiments and fears surface between what were once the world's two superpowers. We feel that icy chill from China, Ecuador and Cuba. The difference between now and Kennedy's day? We are not "eyeball to eyeball" with the threat of nuclear retaliation. The Soviet Union crumbled, the Berlin Wall fell, our nuclear arsenals are shrinking and President Obama is calling for additional disarmament, but underneath all that progress lies the expanse between words and actions.

Today the Senate will vote on the most progressive bill on immigration policy in decades, though imperfect. Today the Supreme Court will rule on cases that may have finally caught up to public opinion. Edward Snowden will either surface or he won't. Wendy Davis will be a hero to many, particularly women in this country who value their right to make their own reproductive health decisions. And another anniversary of something historic that a young, Catholic president did fifty years ago will pass. In some ways, we are lightyears ahead of where we were that June day in Berlin when all eyes were on President Kennedy. In others, in the words of the great Aaron Sorkin, "we are absolutely nowhere."

Tuesday, June 25, 2013

Where New Music Tuesday and History Collide

When an artist resurfaces, there can be mixed reactions in the music world. When a true music legend resurfaces with a new album, now that's a different story. The incredibly talented Mavis Staples has released a new album, One True Vine. It is everything you would imagine a Mavis Staples album would be in the 21st century. It is her best rolled-out release in decades and arrives just two years after she won her very first Grammy. It's hard to imagine a woman this brilliant and with that amazing breadth of work didn't receive a Grammy until she was in her seventies.
 

History and this beautiful new album collide today as the Supreme Court of the United States struck down a portion of the Voting Rights Act. By striking down Section 4 of the VRA and requiring Congress to create a new formula, they've all but rendered useless the teeth of the VRA which is Section 5. Mavis Staples and other members of the Staple Singers participated in the Civil Rights Movement. The Staple Singers were, for all intents and purposes, the sound of the Civil Rights Movement. Their soul sound often opened for Dr. Martin Luther King, Jr. They provided their voices to an entire movement. Those voices won't be stifled today.

Sunday, June 23, 2013

Quote of the Day

"I admire how she protects her energy and understands her limitations."
-- Terry Tempest Williams, Refuge: 
An Unnatural History of Family and Place

Tuesday, June 18, 2013

The People Who Shape Our Lives

This morning I learned that my uncle passed away last night. He lived just past 60, an atypical life span for a man born in the 1950s with Down syndrome (life expectancy is now on the rise for those with Downs). Like many with Downs, he had a genetic heart defect--a hole in his heart. For much of the last two decades he battled dementia, as many with Downs do as they age. Several years ago he had a stroke and has since been a shell of the happy-go-lucky man I remember from my childhood.

The more I thought about my uncle this morning, the more I realized that he shaped my life in ways I had never stopped to appreciate.

I grew up knowing that my uncle was special. When I was young, I knew that he was born without something called a chromosome. I didn't know what that meant when I was a child, but I loved having an uncle who was playful like kids my age. I thought it was cool that he did gymnastics and I was proud of the Special Olympics medals that he displayed in his bedroom. As a kid, I knew that he'd spent part of his childhood at a place that wasn't kind to him. I didn't understand neglect then, but as I got older I understood why he and many in my family spoke of the state psychiatric hospital with disdain. When I was eight and nine years old, I didn't understand why this man I'd always known to be happy and caring could be angry and at times violent. As he aged and I grew up, I started to understand the relationship between Down syndrome and dementia.

My uncle, who was the same age as my mother and her siblings, was actually my great uncle. He was raised with my mother and her siblings by my grandmother, his sister, once he came home from the state hospital. This meant that when I visited my grandparents, I was also visiting my uncle. His bedroom was upstairs and he loved to sit in his recliner, often in his underwear twiddling his socks, watching his favorite television shows like Growing Pains. In his life, he worked a variety of jobs, mostly janitorial-type jobs that allowed him to feel like he was a part of a community (one of the true successes of the policy of deinstitutionalization). I often remember picking him up from work when I was a kid and his work made him so happy.

Eventually my uncle was unable to stay at home with my grandparents because of the progressing dementia. By the time I moved in with my grandparents at the age of ten, my uncle was living in an assisted living facility in Pocatello. Those were trying years for my grandparents as they faced the reality that they could no longer care for him on their own. The facility where he lived was finding it more and more difficult to deal with his behavioral problems and my family jointly decided that the best option for him was to build a group home (assisted living facility) where he could live. When I was eleven, we opened that group home and my uncle was one of the first residents to move in. For a time it was the perfect arrangement. However, the dementia was becoming more and more apparent. He went from doing anything for his dear friend and roommate with whom he shared an incredible bond, perhaps because they had Down syndrome in common, to being violent toward that roommate. He once gave me his Sesame Street blanket that had Big Bird on it so his roommate who was afraid of birds would not be afraid. I still have that blanket. It was very hard to watch his spiral downward. Eventually the group home we built for him could not give him the care he needed and he was moved into an ICF/MR (intermediate care facility for those with mental retardation). He spent the rest of his life in various facilities equipped to deal with his many needs.

My uncle's time in the group home my family built for him is just a small part of how his presence in my young life actually shaped it. When we opened the group home, my mother, brother and I lived in the facility. Unlike any of my peers, I grew up in a group home. For much of my adolescence, I had what amounted to an extended family of developmentally disabled strangers who I grew up living with.  That roommate of my uncle's that I mentioned actually took me on my first date when I was sixteen. There was nothing unusual about this to me. However, none of this would have happened had it not been for my uncle. When I was thirteen, my mother married a man with two developmentally disabled children. Acquiring two new siblings with disabilities wasn't unusual to me because I'd grown up around my uncle.

At the age of twelve, I volunteered for Special Olympics for the first time. This is something that would become a regular part of my life. Without my uncle and his long and storied (according to him, of course) Special Olympics career, I likely never would have become involved with Special Olympics.

When I began college at Idaho State, I went to work for a developmental therapy company that had once sent developmental therapy aides out to our group home to work with our residents. One of the first places I was assigned was the very facility in Pocatello where my uncle had once lived before we built our group home. I became the house parent there and was surrounded by unconditional love, a new bundle of sibling-like friends and an experience that I would never forget. I spent five years there as the house parent and there was hardly a day that I wasn't reminded that both my uncle and my sister were once residents there. Nearly every day that I went to ISU I passed the very building where I have many memories of picking my uncle up from his job when I was a kid. I often felt like he was still a part of my life, though I didn't see him much as he was by then living in a facility in Idaho Falls.

Where I find my uncle's influence in my life almost daily now is in a research project I began in 2005 about the state psychiatric hospitals in Idaho. Their history, riddled with dark periods when patients of those hospitals were considered inmates and treated as such, drove my research and that research now exists in the form of a book I am writing on the topic. Though I first became aware of a scandal at the state hospital in Blackfoot in the 1940s because I was researching Governor Charles C. Gossett, my interest in the history of psychiatric hospitals in this country and the horrific history of neglect and maltreatment that they share is driven by my knowledge of how my uncle was treated in the 1960s in those very hospitals. With every appalling account I read of how the developmentally disabled and mentally ill were treated in these facilities, I am reminded of my uncle and the terrible conditions he endured while residing in one such facility. What I read makes me angry on his behalf and makes me question how so many could have seen nothing wrong with the atrocities that took place in these facilities for so many decades.

My uncle's presence in my life while I was a child certainly made me blind to the differences between human beings. Like me, my younger brother was blind to how different the people we were surrounded by as children actually were. He had no idea that not everyone had developmentally disabled siblings in their homes. He had no idea that it was unusual for him to grow up in a group home. The term color blind is often used to describe people who take no notice of race. For my brother and I, we grew up completely oblivious to disabilities. They gave a person character, but they didn't make them any different than us. My uncle taught us that it didn't matter and we carried that with us into adulthood.

Beyond the heavy, important things having my uncle in my life taught me, there were the lighter things, too. My uncle had a bit of speech impediment, as many with Downs do, and he often repeated sayings in his own speech-impeded fashion. For instance, instead of the saying "life is hard,"it became "slice a lard" and "C'est la vie" became "shoot a bee." These little sayings pop into my head from time to time and it doesn't bother me a bit when I say them and nobody has a clue what I am talking about. Because when I say them, I am reminded of a man who changed my life forever.

When I visited my grandparents as a kid, I would sit down with my uncle, he'd get out a red plastic cup and he'd pour me half of his Diet Coke and we'd sit there, drinking our soda and teasing my grandpa. Teasing my grandpa was a favorite pastime of my uncle's. I wouldn't mind sitting down with my uncle today, splitting that Diet Coke, and stealing my grandpa's hat just to hear my uncle giggle at my grandpa's protest and say, "slice a lard." Slice a lard, indeed.

Friday, June 14, 2013

TGIF Tunes



Nine years ago this week, the great Ray Charles died. The performance in this video is of Ray with the Edmonton Symphony. Even today I can remember hearing his voice for the first time. There is no one that matches Ray Charles and perhaps that is why I fell in love with his music. I find nothing more soothing and grounding than listening to the best of Ray Charles, which for Ray is nearly everything he ever wrote or performed. Happy Friday!

Thursday, June 13, 2013

'Get It Together & Grow Up'


Visit NBCNews.com for breaking news, world news, and news about the economy

If you missed All In with Chris Hayes last night, check out this clip. If you don't have five minutes to watch the entire thing, make sure you catch his monologue from midway on.

Wednesday, June 12, 2013

Deinstitutionalization

Perhaps the best piece I've read about the long-term effects of the policy known as deinstitutionalization ran in the Washington Post today. Harold Pollack, a professor at the University of Chicago and a fellow at the Century Foundation, wrote an important opinion piece on the policy. He points out the disparity between how the developmentally disabled have faired versus how the mentally ill have faired since deinstitutionalization arose.

As someone who researches the history of psychiatry in the United States in the 20th century, particularly the state hospital systems (formerly referred to as insane asylums and eventually psychiatric hospitals) of the 1920s through deinstitutionalization, I find the topic quite obviously intriguing. However, there is a lot of information out there that has a political tilt and is of no help to an historian or researcher trying to understand the implications of deinstitutionalization. Pollack offers something that is entirely useful and trustworthy. I say trustworthy for one particular reason--Pollack's brother-in-law is disabled and thrives in a post-deinstitutionalization world. I find that I trust those who understand the pitfalls and positives of the world we live in since the policy went into effect because they live it. They see the long-term implications of the policy around them.

My own personal encounters with deinstitutionalization are not unlike those of Pollack. Pollack's brother-in-law was born into a culture that believed the best thing for the disabled was to place them in an institution and essentially forget about them. My uncle was born into that same culture and his parents were told that their best option was to put him in such a place and move on with their lives. They defied this advice and raised him at home until he was nine years old. He then spent a number of years, terrifying years, in a state hospital where he was neglected and treated poorly. Eventually he returned to his family and lived with his sister for many years until his care was more than she could attend to on her own. My family actually built a group home with the goal of taking care of him long term. Unfortunately, his needs eventually exceeded what the group home was designed for and he moved into an ICF/MR (intermediate care facility for those with mental retardation).

Pollack makes many great points in his piece, including the following:
"This story reminds us that good policy ideas aren’t self-executing. They require political backing for their eventual success, particularly when the ideas themselves aren’t completely right or when the resulting policies require mid-course correction."
Something that seems missing is any sort of commitment to the policy of deinstitutionalization by those who sponsored its creation in the first place, particularly the Republican Party at the state and national level.

I cannot recommend Pollack's piece highly enough. 

Even if you've never heard of or considered deinstitutionalization and the policy implications of a decision that was made and put in motion decades ago, you will find that the policy matters today. It matters as states, particularly red states with conservative governors and legislatures, slash Medicaid budgets (particularly portions of the budget that, for instance in Idaho, provide developmental therapy, rehabilitation, psychiatry and other services to the developmentally/intellectually disabled as well as the mentally ill). 

Every day in America we encounter the product of deinstitutionalization, often without even realizing it. Our tax dollars support the programs that care for those who were once institutionalized or who would have been institutionalized if born in another era. The tables at our favorite eateries might be cleaned by members of the IDD community who enjoy every opportunity to live their lives in as normal  fashion is possible for them. And it is very likely that you know someone or are someone who cares for a disabled family member or even a stranger, whether in your own home or at your place of employment in your community. It may seem a policy from another generation, but it will forever impact generations of Americans.