The Way the World Could Be

If you have spent any time at Camp McDowell in Nauvoo, AL, you have heard this phrase: The way the world could be. What started as a typical Episcopal summer camp has evolved into a lot more over time. It became the diocesan conference center, and then emerged as the place where the Alabama Folk School resides. A sustainable, organic farm came into being, along with an environmental learning center, a preschool for the children from Winston County that live close by.  This is an impoverished county at the very end of the Appalachian Mountains, in coal country, so that program was a true gift to the area.

And then, there’s Bethany Village. A complex of lodges that can sleep up to 22 people each, along with summer-camp style cabins, an enormous gathering space called “Doug Carpenter Hall,” and other charming gathering spaces. “The Doug” is like an extraordinarily beautiful barn. None of that is so different or remarkable for any diocesan camp and conference center except for the fact that Bethany Village was built to be as welcoming and inclusive as possible for people with all different abilities and needs. Whether it’s about canoeing, or swimming, or getting in and out of the shower with no fuss, there’s a place for you, full stop.

For the past two weeks, Bethany Village has hosted a set of summer camp sessions that open space for fragile people with varying abilities to experience the joys and mosquito bites (🤪) of a summer camp program. Under the direction of McDowell staff, I was the co-lead member of a program team that served a combination of regularly and differently abled children in the 4-8th grade. We had 21 one young ‘uns, 11 of them, what you’d call ‘mainstream.’ There were a number of Downs Syndrome children, a couple with autism and a few others with additional vulnerabilities.  We also had 26 “Camper Buddies,”10th-12th graders who are asked to wrap themselves around the campers to provide the care, assistance, and support our campers need to thrive at camp. I watched the camper buddies grow in love and devotion for their younger buddies, and it was beautiful.

On the last night of the session, we did what almost every session at Camp McDowell does: we had a talent show. It began with F., who had been rehearsing with her mom before camp to sing “Amazing Grace” at the talent show. She decided that was far too tame and ended up belting out “Hello” by Adele instead. She brought the house down. The raucous cheering and standing ovation were so loud it made my ears hurt. Another act brought the camp staff person in charge and a petite, peppy young camper buddy together for a burp throw-down. The duration and strength of burping that young woman was capable of left us all slack-jawed and then on the floor laughing. Only at camp.

But it was the most fragile and indomitable of the campers whose act was transcendent.  This young person walks within inches of the line between life and death all the time. Her needs are so significant we ask a parent to be along for the session in case A has a medical emergency. There is so much our culture would describe as “wrong” with her, including Downs Syndrome and several other health issues. She is nonverbal and requires help walking. And she is a scrappy, determined survivor of the worst health issues can throw at us.

Before her performance, the MC of the talent show asked the audience that was growing noisier and rowdier by the moment, to quiet down. He announced A. would be performing and showed us how to raise our arms and wave our hands to demonstrate our appreciation for her performance, rather than hoot and holler and whistle.  Everyone understood. All the campers, all the buddies, all the adults. The space went so quiet you could hear a pin drop. Then, A’s two camper buddies brought her out and “Let it Go” from Frozen began to play.  One of the camper buddies held the microphone up for A and we were gifted with a series of grunts and groans and yowls—no other way to describe her vocalizations—and there wasn’t a dry eye among the older camper buddies and adults.  

Her mom got to see her daughter do her own version of belting out a song with glee. Her mom got to see a crowd of young people (the very ones who are of an age where it is so easy to be callous and indifferent) spellbound by this one young girl who, every day, defies the odds stacked against her, who was now transcending and transforming those odds, by getting to be nothing more than a kid at camp.  

For a number of us, there was an almost unbearable tension and paradox as we watched the talent show continue to unfold in all its glory.  The words, “the way the world could be” were made flesh in the most beautiful way imaginable. And right before the show started, word had started trickling in about the shooting at St. Stephen’s in Birmingham, we heard at least one person was dead. Some of our campers and camper buddies are members there. Every single one of us knew at least one person at St. Stephen’s. After the talent show and late into the night, my fellow clergy person, a couple of other adults, and I, were up listening to, praying with, trying to remind our camper buddies of God’s unending efforts to heal all that is broken and battered in our world. 

Then, for most of the rest of the night, I lay in bed asking myself over and over again, “What kind of world are we sending these amazing and beautiful young people back into? What have we done to our children’s world…”

How It Is

This Daughter Of My Heart

Another morning began in the usual way for me–coffee, out to check the pool (one hapless little frog needed to get pulled out of the water), then to see how my vegetables are growing. My eggplant bushes are flowering quite profusely and one has two babies on it, one of the cantaloupe plants is flowering too, and my pride and joy today: there is a teeny-tiny butternut squash that looks healthy and strong on its vine.

I was up earlier than usual and the house was still quiet so I came back in to read the online NYTimes. One article caught my eye; an article about parents dealing with Sabrina, a young girl on the autism spectrum. You can read the article here. I hope you will. Every muscle in my body clenched up as I read the article. I didn’t exactly have a flashback but, dear God, I knew what was being described down to the core of my being.

There is a ‘severe mercy’ for parents like the Benedicts, like Sherod and me. We discover that there is nothing, I mean nothing, our child can do that can separate him, her, they, from our love. In our experience, love was not enough. When we finally found a behavior therapist who understood what María actually needed, she explained we simply had to quit trying to discuss her episodes of out of control rage with our girl. Insight would not lead to behavior changes. Whatever understanding she might gain from us trying to talk about the rage reinforced the behaviors we so dreaded. Once she had de-escalated after these episodes, we needed to learn to go on as if nothing had happened, even if she had left us, or herself, bleeding, bruised, and overwhelmed. The only way I was able to follow that guidance was to let go–of my fear, my anger, my despair, my very primitive instinct to strike back. This was a kind of radical forgiveness I could never, ever have learned if my daughter hadn’t been entrusted to my care.

Carol, the behavior therapist who worked with us, helped us open space for María to live in our home until she was about to turn 16. That NYT article paints the picture pretty thoroughly–adolescence on steroids is not a pretty thing. And then, one day, Carol and the rest of our girl’s support team sat us down. María was now too strong, she was becoming increasingly cunning, she was at high risk for running away, and the SIB (self-injurious behavior) was becoming unmanageable. When María turned 16 a few weeks later, she would qualify for placement in BARC Housing–an intermediate care facility in Davie, a few miles from our home. ICFs are actually nursing homes. This one was geared to individuals with cognitive and behavioral challenges. Providentially, a bed had opened up at BARC, which in and of itself was sort-of miraculous. If memory serves me correctly, at the time there were only 1000 beds in ICFs in all of Florida for people with all the challenges María was burdened with–and in that year, Florida’s population was close to 19 million. Think about that ratio!

In the very last week before she was able to move to BARC, our girl spun out of control worse than ever, and on the advice of her team, we Baker-acted her, had her admitted to a psych unit as a stop-gap measure while the last pieces were put in place for her move. On June 5th, 10 years ago, our girl was taken to BARC house from the hospital. That day was especially anguishing because it was the first anniversary of my mom’s death. And along with the anguish and grief, there was a relief I felt more than a little guilty about. For the first time in over a decade, Sherod, María and I were all safe.

Every few years, we tremble. A note will go out to the families of BARC residents to ask for help to plead with the state government. All across this country, the push has been to move to a model of ‘community based care.’ On paper, it sounds fabulous; you and your loved one will be wrapped in all the support necessary so everyone can thrive. You’ll get help all the way from folks to cut your loved one’s toenails to behavior specialists, to highly trained home assistance. But all that costs money. A lot of money. And state legislatures all across the country have cut, and cut, and cut, funding so you end up being on endless waiting lists just to get the most basic services; 5 or 10 year waiting lists are not unusual. When Florida’s legislature moves in the direction of cutting funding to ICFs, it is a matter of life and death for our girl and for most, if not all, the residents in need of the care she gets at BARC. So we plead, we ask friends, neighbors, anyone and everyone we can think of, to help us lobby so those cuts won’t go through. To date, our efforts have worked. That in no way reassures me that cuts won’t come that will jeopardize the sustainability ICFs

I share all this because it falls under the umbrella of “Mental Health.” There simply are no words to describe the white-hot rage I have felt since last Tuesday, hearing so many politicians in Texas and in the Senate, talk about the Uvalde massacre in terms of “issues of Mental Health” that besieged “one evil young man.” The ones who squawk the loudest, trying to frame what happened in terms of a single individual with mental health issues are the exact same ones who have made it brutally difficult for our most vulnerable to get the help and support they need. In that regard, those politicians have as much or more blood on their hands as Salvador Ramos.

If you read this blog post, I hope you will consider sharing it with others. Even more, I hope you will read and share the NYT link with others. I know we don’t, and I suspect the Benedicts don’t, ask for sympathy or pity. Rather, I hope our story and theirs might help someone see the kinds of hell-scapes that exist around mental health in this country. It will take a lot of us for asking more of our elected officials for anything to change.