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" 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.

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!

'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.

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.

'I Hope He Hears the Call'

"Someone walks among us 
And I hope he hears the call 
And maybe it's a woman 
Or a black man after all 
Yeah maybe it's Obama But he thinks that he's too young "

-- Neil Young, "Lookin' for a Leader"

This morning in the car I listened to Neil Young's 2006 album Living with War. I hadn't listened to the entire album since 2006 when it was first released, though "Let's Impeach the President" turns up via iTunes shuffle from time to time. The more I thought about the lyrics, the more I thought about the time in which the album was released, the more I realized there are still themes from that album that apply today. Neil Young has always been a master, but this album is more than a musical triumph; it's anger on full display against a deceitful administration and a reminder that it wasn't just Bush that provoked the ire of the American people, but the people he (and now Obama) surrounded himself with.

Without going into my many frustrations and disappointments with the Obama administration on national security and foreign policy, I can point out how eery it is to listen to lyrics like "let's impeach the president for spying...by tapping our computers and telephones" at a time like this. We've come so far in many ways and moved not an inch in others. 



I was particularly struck by "Lookin' for a Leader" due in part to Neil Young's mention of Obama. Unfortunately, sometimes it still feels like we are looking for a leader. A leader who will shun the nonsense. A leader who will stand up to the opposing party and push for measures that aren't politically popular. Measures like gun reform and closing the military detention center at Guantanamo. We need a leader who doesn't attempt to compromise with an unmoving force. Yes, healthcare is a huge win for the American people. Yes, we've ended the war in Iraq. Yes, we're slowly bringing our troops homes from Afghanistan. Yes, there have been successes, but we aren't there yet. We aren't where we need to be as a nation. Not while we skirt the freedom of the press. Not while we continue to participate in drone strikes on terrorists, foreign as well as the four Americans we have killed. Not while we remain without a clear plan for a country like Syria where people are being killed every single minute of every single day. Not while we continue to play by the same rules for the War on Terror that were written by former administration. The former administration that Neil Young not so subtly refers to as "criminals" on his 2006 album. And certainly not while the current administration continues to surround itself with the people that participated, directly or not, with the policies of the previous administration.

I am not disillusioned enough to jump on the crazy train that many on the right have with President Obama and I'm not cynical enough to join the bandwagon of those on the far left. All I want is to a see a bit of daylight between the Bush and Obama administrations on matters that are so intertwined with American civil liberties. That is apparently too much to ask.

Leave it to a Canadian to make me think long and hard about leadership. If you haven't listened to Neil Young's Living with War, I cannot recommend it highly enough. And if you haven't listened to it in a few years, now would be a good time. If it doesn't make you reflect on the current state of our country, you probably think what Bob Dylan and Phil Ochs were singing was just music.

'Wise Up Ghost'

It's official: The new collaboration between the great Elvis Costello and The Roots has a title and it will be Wise Up Ghost.

The title of the album to be released September 17th turned up in my inbox because of what Questlove had to say about it:

Roots drummer Ahmir "Questlove" Thompson, who produced along with Steven Mandel, said, "It's a moody, broody affair, cathartic rhythms and dissonant lullabies. I went stark and dark on the music, Elvis went HAM on some ole Ezra Pound s---."

I happen to have a Google News alert set up for all things Ezra Pound. Imagine my surprise when my Ezra Pound obsessing led to finding out the name of what will be a fabulous album. Come on, September!

Hitchcock: 'Hard Times for the Homophobic'

Editor's Note: The following piece was submitted by Leonard Hitchcock to the Idaho State Journal. It runs just as a nondiscrimination ordinance is being reconsidered by the Pocatello City Council. The piece appears here with his permission.

HARD TIMES FOR THE HOMOPHOBIC

It is increasingly likely that the average American citizen is personally acquainted with someone whom he or she knows to be gay.  It is also increasingly a matter of general awareness that scientific research has established that being gay is the result of biological causes.  Admittedly, a complete and comprehensive biological explanation has not yet been achieved, but it is now widely accepted that two of the operative biological factors are a genetic component, and the chemical environment in the womb. It is becoming clear, as well, that a gay sexual orientation usually manifests itself in childhood.

These two advances in public knowledge have made things tough for anti-gay activists.  Arguments that used to be effective now seem not merely unpersuasive, but downright offensive.  The fulminations of ministers and priests depicting gay people as monsters of perversity, abhorred by God, detested by the righteous, and damned to eternal suffering, were far more plausible when most people thought homosexuals to be exotic and rare creatures, like witches or atheists, and weren’t aware that gay people were there, among them, as neighbors, co-workers and relatives, behaving like perfectly normal human beings. Once gay people began to stop concealing themselves, and the rest of us were allowed to know them as they are, those Biblical characterizations came to seem both unfair and absurd.

What science has revealed about homosexuality has confounded the church’s teachings.  If being gay is to be labeled a sin, it must involve the will; it must be chosen, just as adultery or lying or idolatry must be chosen.  But if it emerges through the operation of biological forces well before it makes sense to speak of “choosing,” then moral strictures do not apply.  Being gay is, instead, morally equivalent to being black or female.  Consequently, discrimination and moral condemnation are, for a majority of American citizens, no longer defensible.

How, then, do those who are determined to keep homophobia alive carry on their crusade?  For one thing, many of them now conceal their own religious convictions and are careful to refrain from publicly attributing to gays the sinfulness and personal guilt that they believe them to bear. Instead, they pretend to be concerned about other peoples’ religiously-based opinions of gays and the danger that those persons’ constitutional right to practice their faith will be interfered with by laws that protect gays from discrimination.  Alternatively, they profess concern about preserving peace in the community if those with such opinions are not appeased.

For some anti-gay religious sects, doctrinal change has accompanied the accumulation of scientific evidence and change in public attitude.  Rather than asserting that being gay is intrinsically sinful, some denominations now take the position that it is only acting gay that constitutes a violation of God’s law.  Which is to say, desiring to have sex with someone of the same sex is excusable, because it is biologically determined, but actually having sex with that person is immoral because it is a willed act, i.e. within one’s power to refrain from performing. 

The upshot of this humane and enlightened doctrine is that you may, if you are gay, be accepted as a member of the congregation, but only if you pledge to live a life of celibacy.  This raises the obvious question: Why does God, who is surely responsible for your biological nature, implant in you a powerful desire that He then forbids you to satisfy?  Is this consistent with His goodness and mercy? 

Another tactic of anti-gay activists, in response to the fact that the public no longer seems tolerant of outright condemnation of gay people as individuals, is to attack something called the “gay agenda.”  They present the gay agenda as something sinister, conspiratorial, and subversive:  Gays are plotting to undermine Christianity, to weaken the country’s moral fiber, to infiltrate liberal organizations and turn them to their own purposes, to seize political power and pass laws that give them free rein to parade their perverse “life style” publicly and without interference. 

So, do the gays have an agenda?  Of course they do, but it is neither hidden nor nefarious, and it is fundamentally the same agenda that all victims of systematic prejudice and discrimination have been forced to formulate and act upon.  Didn’t African-Americans have an agenda?  Women? Native Americans? Disabled people?  Did we find it suspicious that those groups had agendas?  If we did, it was not because there was something wrong with having an agenda; it was simply because we didn’t believe they deserved to enjoy the same civil and political rights as the rest of us.  And underneath the camouflage of arguments about “free exercise,” and keeping peace in the community, and sinister agendas, that is what anti-gay activists assert: gay people are morally unfit to be treated equally.