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Archive for the ‘Disability Rights’ Category

Celebrating a Life Well Lived

Tuesday, October 25th, 2011

On Thursday night at 10:00 PM Eastern time, PBS will feature a fabulous movie as part of their “Independent Lens” programming. Written by Eric Neudel, the film is “Lives Well Lived,” about the disability rights movement; it features, among others, my cousin Frederick Allen Fay, who died last month at his home in Concord, MA.  It was one of my greatest honors to be asked to lead the worship service for him, for he changed the lives of many — including mine.

Here is a portion of my remarks:

How does one do justice to a man who is so much larger than life? How does one do justice to a man who spent half of his life flat on his back and yet was more powerful than a phalanx of soldiers?

As we ponder that, I need to tell you that, as a child, Fred wasn’t my favorite cousin.  He was a few months older than my brother Peter, which meant that both of them were two years older than I. Peter and Fred were into sports and girls and … teasing me.   I really liked Bruce and Margaret and Jean and Aunt Janet and Uncle Allan and their wonderful dog Bandit. Fred was OK, but no, he wasn’t my favorite.

That all changed after his accident.  Or, I should say, after he transformed his life – and mine, and many others – following the accident.  He was not only my favorite, he became a personal hero. Except that he didn’t like the idea of being put on a pedestal.

Now, in my life, I’ve been fortunate to meet – if only in passing – Desmond Tutu and Martin Luther King, Jr.  And I’ve read a lot about Jesus and Gandhi, Mother Teresa and Nelson Mandela, the Dalai Lama and Franklin Delano Roosevelt and others who changed the world. Speaking for myself, Fred is way up there with these other luminaries – so much larger-than-life, so able to make wise and loving choices especially when they’re difficult or unpopular. What is it that they have-or-think-or-believe that gives them the faith or the vision or whatever-it-is to become pioneers in courage?

Ever since Trish and Derick asked me to develop and speak at this service – one of the great honors of my life – I’ve struggled to discern what makes a hero. In addition to Fred and Jesus and Gandhi et al., I’m thinking about 9-11 and the firefighters in New York and the airline passengers in Pennsylvania who looked death in the eye and decided that a brave life was more to be treasured than a long life.  So, for two weeks, Fred, 9-11, hope, and heroism have all been spinning together like the makings of a milkshake in the blender of my mind.

It took a while, but I finally “got” it. Some of it has to do with opportunity, but there’s more.  I finally “got” why Fred, powerless by the world’s standards was the most powerful man I ever had the privilege of knowing up-close-and-personal. I finally “got” what underlay Fred’s “can do” attitude even when he – physically at least – “could not.”  I finally “got” why my young and rambunctious children preferred to spend the day at home with Fred than out sightseeing or going to the playground or a movie.

Namely this:  what Fred had in common with Jesus, Gandhi, FDR, MLK, the Dalai Lama, Mother Teresa, Desmond Tutu, Viktor Frankl, and other champions of justice has everything to do with power – specifically, the use and misuse of power.

It is often the case that someone abused as a child grows up to become an abuser himself. Physically and emotionally, one inflicts the injury upon one’s children that was inflicted up them. That goes for groups and countries also: a few crazy Muslims that were oppressed by their US-supported governments felt justified in lashing out against their tormenters – to whit 9/11.  We, the most powerful country in the world, then felt victimized and retaliated against those countries that harbored the abusers. It’s a perpetual seesaw of victim – abuser – victim – abuser…

And if it’s not the seesaw of violence, it can be the less obvious but equally destructive iron triangle of victim-abuser-enabler.  People involved in Al-Anon or other codependency programs know how easy it is to accommodate those who are addicted or abusive. When we’re caught in that victim-abuser-enabler triangle – and most of us are at one time or in one way or another – we identify ourselves by our lack of power.  We think of ourselves as “less-than” – less-than-perfect or less-than-powerful in a cruel and unjust world, whether because we are black, female, physically challenged, of the wrong religion, or children of alcoholics, or the child who wasn’t the favorite, or one who lacked the advantages of his peers… well, you get the idea.  We self-identify by what is missing – our lack of influence and power. We don’t recognize, embrace, or live our God-given power in healthy ways.  When we do claim our power, it’s often at the expense of others, making them into victims or enablers.

But not Fred.  Not Jesus or MLK Jr. or Mandela or FDR or the other truly great men and women in history. They never self-identified as “less than.”  They never got trapped in the vicious triangle of abusive power. What makes Fred so remarkable is that he never felt sorry for himself; he owned his power without oppressing others. Further, it upset Fred when folks put him on a pedestal because that necessarily meant that he was “more-than,” and the other was “less-than.”

But this only half the equation. Too often, we think of power as a limited resource, like money and food, without enough for everyone to be comfortable.  For me to enjoy as much power as I want, you need to have less.  It’s a dog-eat-dog world – right?

This is what I realized while thinking about Fred, Jesus, Gandhi, et al. – true heroes declare their power AND teach others how to claim theirs.  They empower those who think of themselves as “less than.”

So where do we go with this?  Before answering that question, I’d like to share Fred’s response when I asked how he managed to stay positive and playful.  (I was feeling sorry for myself after some life challenges and wanted to know how Fred avoided self-pity.) “How do you do it,” I asked.

“Granddaddy,” said Fred. “Huh?” I replied, to which he continued: “When I came out of the surgery and realized I was a paraplegic, I thought about our grandfather after that terrible car accident that broke his pelvis when he was 83.  No one expected him to live, or, if he did, it would be in a wheelchair. But other people’s assessments of what Granddaddy could not do didn’t stop him from doing what he could.  It took six months, but he was up and walking with the help of braces and special shoes.  He sometimes used a cane, but rarely. He never stopped hobbling out to pick blueberries, or make a fire, or serve people food and drink.  He never complained, and he never stopped enjoying life.  So whenever I feel sorry for myself, I remember how much fun Granddaddy had in living and how much he enjoyed people and vice versa.  So I consciously work on being grateful and it brings joy.  I wouldn’t change my life for anyone’s.”

In closing, Stephen Covey talks about the four aspects of a quality life: living, loving, learning, and leaving a legacy.  The legacy Granddaddy left was a can-do spirit and a joy in living regardless of physical challenges. Fred’s legacy is all that plus an awareness that we don’t need to be trapped in a victim-abuser-enabler triangle.  We can embrace our power and we can give it away.  As Granddaddy was a transforming image for Fred, so was Fred for me – and I hope you.  By sharing our gifts and power with others, we, like Fred – and Jesus and Gandhi and the others – can and will change the world.  And the saints and heroes in heaven and on earth will cheer.

If you’d like to read more about Fred, please go to my brother Peter’s website ( or do a Google search — you’ll be amazed at the range of his influence.  Though physically limited to a wheel bed in a Boston suburb, his moral and spiritual presence has been felt throughout the world. Truly, we give thanks to a life very well lived.