Archives for June 2013

Parallel universe

Surprisingly similarI should stop being surprised. Every time I read about another family with a member who has a disability, I am struck by how similar their story is to mine. I see the same emotions, the same experiences and the same themes in every family that lives with disability.

The story told in Twin, a memoir by Allen Shawn, is no exception. Shawn, a composer and professor, writes of his twin sister Mary, who has autism. When they were eight years old, she was abruptly removed from their home and went to live in an institution.

Like my Uncle Melrose, Mary was sent away without notice to her siblings. In my family’s case, my uncle was declared a ward of the state and sent to a state school when he was 15. His parents didn’t tell my dad what they were doing and he was devastated by their decision, just as Allen Shawn was by his own parents’ actions.

Lack of options

Even though Allen Shawn’s saga played out in the 1950s, his family faced the same lack of options that my grandparents did in the 1930s. There were no services other than institutionalization available.

The Shawns, like my dad’s family, may have wanted to keep their home intact, but they couldn’t cope with the special needs of their child. There were no educational opportunities in the public schools for Mary and Melrose and there were no social services.

Legacy of grief and guilt

In Twin, Shawn writes that the sorrow that his parents endured seeped into his own experience.

As an adult, he realized that he was still “carrying the burden” of the decision his parents “had made all of those years ago, one I am sure they agonized over and continued to agonize over ever after, to send their child to live away from the family. I carried their agony with me and I carried their guilt…”Twin trees

In the same way, I took on the burden of pain and grief that my father and his family felt when Melrose was sent away. No one asked me to; it just turned out that way.

Perhaps that’s the way these things play out; it takes more than one generation to work out the anguish and heartache that comes with having to institutionalize a child with a disability.

Unbreakable connection

It is understandable that Allen Shawn felt close to his twin sister. Indeed, he believed that the connectedness that began in the womb endured throughout their lives — even though they lived apart.

Although my dad and Uncle Melrose were not twins, there was a very strong bond between them. Dad took care of his younger brother; he helped him dress and eat and go to the bathroom and he defended him from neighborhood bullies.

To a lesser extent, I felt connected to my uncle. Even though I didn’t find out about him until I was in my teens, I never forgot about him. And when I moved to the city where he lived decades later, I knew I had to find him.

[Author’s Note: To demonstrate how much the world has changed, the New York Times ran a piece about a Canadian program that offers support networks and services to families with a disabled member. It’s a model that needs to be replicated in this country and elsewhere.]

Status quo is alive and well

Change Same Signpost Showing That We Should Do Things DifferentlThere is a French proverb and a common saying that “the more things change, the more they stay the same.” In other words, change doesn’t affect reality on a deeper level; instead, it cements the status quo.

That certainly seemed to be the state of affairs when I picked up the local newspaper this morning and read that one of my state’s institutions housing people with intellectual disabilities had probably lost its federal funding.

The Austin State Supported Living Center had failed to improve conditions by a federal deadline, so it looks like Medicaid officials will withhold $29 million in funding – more than half the 100-plus year-old facility’s annual budget.

History repeats itself

Unfortunately this is nothing new for Texas institutions. When I worked at the state agency that runs these facilities in the 1990s, many of them were placed on what was called “Vendor Hold” for noncompliance with federal standards. It happened with disturbing regularity.

There are thousands of reasons for the shortcomings of institutions. Among them are that they house some of our most vulnerable people, who are fragile and often difficult to work with. Funding is chronically inadequate, and so direct-care workers are paid little and given minimal training.

Legislators are habitually reluctant to boost funding until something “bad” happens – a resident is injured or dies or an energetic reporter does an expose′ on conditions inside institutions.

But radical changes happen, too

Despite this grim reality, much has changed in how we care for people with intellectual disabilities. Since 1965, there has been a nationwide movement to reduce institutional populations and to establish more community living arrangements. Because of this effort, the number of Americans with intellectual disabilities who live in institutions has declined an astonishing 85 percent.

A dozen states have closed all their institutions and five states have only one in operation. My home state Texas, never known for being progressive, still operates 13 institutions, although it closed two state schools in the 1990s and has radically reduced its institutional census.

Many people argue that all such institutions should be shut down; that they are unnatural living arrangements and that because they are poorly funded, they can never offer satisfactory care.  Others believe there is a definite need for institutions; that some individuals cannot thrive in any other setting.

There’s probably truth to both arguments. But the overarching truth is that our society is still failing to adequately provide for those who are most vulnerable. It’s been going on since time began – the status quo is alive and well.

What is the church doing to reach out to people with disabilities?

Jesus gathered all sheep into his fold.

Jesus gathered all sheep into his fold.

I’ve been a church-goer all my life, belonging to congregations of various Protestant traditions. And I have to wonder why I so rarely see people with disabilities when I attend services.

I often encounter older folks on walkers and I take my aging mother in a wheelchair to the church we attend. I occasionally see a young person with a service dog.  But for the most part, I have almost never seen people with intellectual disabilities or any severe physical handicaps when I go to houses of worship.

My Uncle Melrose, who had an intellectual disability, attended services at a Baptist church when he lived in a group home. When he lived at a state institution, he was a regular at weekly worship on the campus.

Ostracized again

From the lack of visibility of people with disabilities in church, it appears that this is one more venue where this population is still kept separate from the mainstream of society. You would think it would be different, given that church communities are where unconditional love and acceptance are supposed to be the norm.

That’s why I was delighted when I saw that the Dallas Theological Seminary had published a number of web articles on the subject of welcoming people with disabilities into the church community.

Years ago, I was a member of a church that was also the spiritual home of a man who was visually impaired and who had schizophrenia. He had been abandoned by his family and was virtually alone in the world.

He was a very bright and curious man and he wanted to work, but had difficulty finding employment. He had his own apartment and used public transportation as well as hitched rides with fellow members of the congregation, including me, from time to time. Occasionally, he would have psychotic episodes at church or on group outings.

I was never around when these episodes occurred, but apparently they frightened the church staff.  I’ll never forget one of the ministers told me that it wasn’t appropriate for the church to help this man. We weren’t equipped to do so.

We’re all in this together

I understand what he was saying. I certainly was not trained to deal with a person experiencing psychosis. But at the same time, I had to wonder, if the church couldn’t help him, then who could?  He was a fellow traveler on the human journey. Aren’t we all in this together?

The apostle Paul wrote something that I think is apropos to this situation. In I Corinthians, he said, “The members of the body that seem to be weaker are indispensible.”

Indeed, in God’s eyes, the man from my church and my uncle were both indispensible, regardless of the limited gifts they had to offer or the deficits they endured.  I think the key here is that people like my uncle and the man at church require us to slow down and pay very close attention. They spur us to compassion and challenge us to abandon our selfish preoccupations.

If we can rise to the occasion, we’ll probably learn something about ourselves. We might even change a little bit. After all, isn’t that what going to church is about – opening ourselves up to the transformative power of the Divine?