How Soft Skills Can Conquer A Hard World
Life, Death, Luck, Love
My elder brother Phil was born 70 years ago in Detroit, Michigan with a tiny bit of a tag on one chromosome. That, plus a difficult forceps delivery, caused him to have cognitive brain damage and a slight case of cerebral palsy. He has never been able to develop an intellectual capacity beyond second grade level. Still, he was lucky enough to be born to my parents who dedicated their lives — and our family — to loving and honoring him as a complete human being, endowed by God with a whole spirit, recognized by the state as a full citizen.
Being held in this regard spiritually and legally has not stopped him from being victimized, since his slow reasoning and poor speech make him a soft target in a hard world. As his younger sister I have spent my whole life watching his struggle unfold. He’s been bullied, robbed and beaten, targeted by the community and police for crimes he didn’t commit, denied education, rejected in love and friendship, and one of his most trusted caregivers embezzled $12,000 of his Social Security funds. But he has also gone to public school, been supported by state programs so he isn’t homeless, and had the dignity of daily work. He’s been sheltered in group homes for decades and with the exception of The Embezzler, he’s been treated extremely well and even loved by staff members.
Phil’s life has been so good that he’s the first generation of people with cognitive disabilities to live this long. Most used to die in the institutions they were sent to from childhood or infancy. Whether treated well or meanly they were regarded as beasts, and they would pass from our presence young and without notice. Instead, Phil has been here for 70 years weaving his unique life experience in with the rest of ours, and making many lives richer for it. I just heard from a colleague that folks with cognitive disabilities are living well into their 80s now, causing a whole new raft of issues in appropriate housing and care, but that’s another story.
What Happens When We Care
This story is about Phil, his partner Wayne, who died this week, and the far reaching benefits of growing up with love. Phil and Wayne met around 1955 in a special education Sunday School class that our church was enlightened enough to sponsor. Since Phil is older than me, and I saw him, and people like him, enfolded into daily life at home and church I naturally grew up to accept this as the way things should be. So did our whole congregation of people who were young in the 1950s and 60s, as well as the families of Phil’s and Wayne’s extended social networks.
In fact, all over Detroit and the U.S. we were in the midst of a civil rights social revolution that for the first time acknowledged all sorts of historically marginalized people. That’s when larger society really began to wake up to the full meaning of the Jeffersonian ideal that all men are created equal. (And yeah, as a woman writing this, the M word still rankles but that too is another story.)
Being acknowledged as equal does not mean Phil and Wayne were universally treated the same as me, but they’ve had pretty good lives. They were together long enough to become true partners and not just friends. They worked at different jobs and in sheltered workshops when those jobs dried up. They received Supplemental Security Income (SSI) and health benefits. And most importantly their civil rights have been honored and even championed. So their lives have not been inordinately disproportionate in dignity from mine.
A lot of people have worked hard to make that so. And this week when Wayne died after a long illness and a brief struggle, I’ve seen a slice of this up close and personal again, even though I’m thousands of miles away. As a whole cast of characters played their parts to treat Wayne and Phil with love and dignity this week, I have been so moved.
Wayne has had a family to shepherd him to the other side. They flew in from around the country. They were with him when he died in hospital. They gave him a proper burial. Phil was included in these rites of passage. He was taken to the hospital to say goodbye. He was with the family at the funeral home and introduced as a special friend. He was included in the family dinners.
Friends from Phil’s and my childhood have come forward, as has the group home staff, to make sure Phil gets to do the things any grieving partner would. They made sure he was clothed in dignity. The pastor who performed the service for Wayne also knew Wayne for years, and was able to speak personally about the man.
These family, friends, and staff reached out to me, Phil’s family, to keep me in the loop of how these important, human rituals were unfolding. Together, we had a perfectly human experience. And as is supposed to happen, we have turned this death into something that will live well in the hearts and minds of all who were part of it, even marginally so.
And then we can move on with peace, and hope for the future not only of our own lives, but for the continuation of life on this planet. These ceremonies of love help us believe that before us and after us, life worth living will go on.
Somewhere In Detroit, Somewhere In Syria
This morning while in that delicious fog somewhere between asleep and awake, my soul reminded me that I’m a social creative known for inspiring viewpoints and generosity of heart precisely because from birth that’s what’s been modeled for me. I was surrounded by — and learned how to replicate — the kind of love, respect, and community that would support guys like Phil and Wayne in their life and death story in Detroit this week. Okay, maybe it’s somewhat in my nature, but as a lifelong scholar of these things I know at least 50% — and I think more like 80% — of that is nurture.
And just as clearly, I realized that somewhere in Syria, or on the road out of that so-forsaken country, a little girl’s life is being shaped by her own nurturing at the hands of her family, her companions, her community. I pray that she has parents as strong and creative as my own, who take something very hard and personal and turn it into something that’s good and bigger than them. I pray that she has the luck of my brother Phil: born with a heavier burden than any child should have to bear, but fortunate enough to live in the best-so-far place and time to bear it. I pray that she can grow up to feel the soft embrace of enough love to grow into her full humanity and dignity, despite the world’s hard treatment, as Phil and Wayne had the opportunity to do. And in the face of overwhelmingly terrible things happening in too many children’s lives in Syria, in Michigan, and in every corner of the world, I pray, I pray, I pray that not only their lives will go on, but that their spirits will too.
