Fathers Voices: A Journey of the Heart
James May,  Final Keynote Speech
Seattle Central Community College, October 23, 2004

What a magic moment to stand before you today, to celebrate nineteen years of directing this program. Thank you for coming. I hope the conference has been grand. I know it’s my favorite day of the year.

When I titled this speech over eight months ago, “A Journey of the Heart,” I had no awareness that I would need actual heart surgery five months later. Thanks to many of you in this room for your support, love and encouragement. I am back up and running. Today really is about the heart, literally and emotionally!

Many of you in this audience know me, others don’t. Let me give you a few background pointers so as to expand on Paul Blair’s introduction. I used to be a high school teacher so I never miss someone falling asleep! I am also not a very serious guy and I love to laugh. Physically I have shrunk in this job. I use to look a lot like John Wayne and was 6 feet 5. Now I am 5 feet 7 and often sit in a rocking chair.

I have been called many, many names, including Mr. Snow Cone, the Grand Poo Bah of the Fathers World, and of course, Moses, and I have been told I look like Ernest Hemingway, Sigmund Freud or Gabby Hayes and that I sound like Garrison Keilor.

There are so things I will always remember about this job, including:

Travel, travel, travel… ah, the joys of travel. Flying around the country is hardly as romantic as people make it out to be: lousy food on a low per diem, crowded planes, cheap hotels - and often darn lonely nights. Sometimes I just came home and grumbled, “never again.” But also thanks to hotels we haven’t bought a bar of soap in almost two decades!

A former “white knuckle flyer,” I traveled over one million miles and visited all but four states. Some places I hope never to see again in this lifetime include Detroit, Michigan, Jackson, Mississippi, and especially Wichita Falls, Texas -- the falls are fake! My memoirs will be titled, “Life on the Rubber Road” to pay homage to all the chicken I have consumed at innumerable banquets and conferences.

So you ask, what are you going to do now?

I will be shopping at The Gap for Old Farts. I will be a professional Santa Claus. I am already up and running. The Santa suit I use at the Bellevue Fathers Network is in memory of Benjamin Fuhrmeister, a young man who passed away. His parents asked that we use donated funds in his memory. Putting that suit on is a spiritual experience - it really is!

I will write several books, do some leisure traveling, take improved care of my health, and return periodically to this program. I assure you that you are in good hands for leadership. And I will continue to tell stories. I was raised in a family of storytellers, and I know that stories contain powerful truths and passion.

Okay, James, how did all this get started back in 1986? What drove you to do this work?

I became tired of the negative images of men, the belief that men are derelicts and deadbeats when it comes to their children. I still get angry when I see images of men as buffoons, testosterone driven womanizers and boozers, and most certainly not very involved with their kids. Madison Avenue is promoting lies, and I wanted to do something about it. I wanted images of men to change from Alfred E. Newman to men who were involved, and loving - men with big hearts.

All this aside, it really all started with my dad. As some of you know, I contracted juvenile rheumatoid arthritis when I was fourteen. I was a special needs kid long before the term was ever coined. I went from a typical, happy-go-lucky kid, whose primary love in life was sports, to a depressed, very unhappy young man, at times even suicidal. It was tough enough being an adolescent, but an adolescent with a serious chronic illness was often overwhelming, both to me and to my family. Shy and introverted, I spent far too much time by myself at home. I did however become quite an astute observer of the changes that were happening to my family.

The changes in my dad were perhaps the most interesting of all the family members. We had always been quite close. A truck salesman, he started to spend increased time at his job, more time on the road, and we gradually grew apart. Rarely did he speak with me about the illness, and he seemed distant and detached. I really needed him, and as I approached my high school graduation I felt abandoned and angry. My reaction was that he just didn’t care.

In my late 30’s I attended graduate school in counseling. We were given an assignment to talk to our parents about a traumatic event that occurred in our family when we were young. My mind immediately flashed to my contracting arthritis at age 14. With some trepidation I called my dad (my mother had passed away by that time) and asked him if I could come over and talk about how it had been for him when I first became ill. He was agreeable to that, but he felt there really was not much to discuss - fifteen minutes or a half hour would be plenty.

We were both very nervous anticipating the discussion about to occur. In as non-threatening a manner as possible, I asked him what he remembered about that time. It was as if I had tapped into an incredible wellspring of feeling and memories. He began to cry uncontrollably and he finally burted out, "I’m sorry, I failed you as a father." His guilt, even after all these years, was immense. He just didn’t know what to do except work harder, make more money, and be a good provider for our family. Whereas I thought he didn’t care; in truth he couldn’t care enough. We talked more than eight hours that day, and forgiveness and understanding began to take place, more than twenty years later. Our family and my relationship with my father truly could begin to grow together rather than apart.

I asked myself, “How many dads are living in utter solitude and confusion?” I knew it was time to speak up and do something on behalf of men raising children with disabilities. One of my favorite writers is Kyle Pruett; in his book, The Nurturing Father, he makes the following affirmations about the importance of men in children’s lives:

“Fathering is the single most creative, complicated, fulfilling, frustrating, engrossing, enriching, depleting endeavor of a man’s adult life… a father may embrace his children but until he embraces his own unique, irreplaceable value to them as a parent, he does not have as much in his arms as he thinks.” (1987)

Let me share some “Journeys of the Heart” with you, men who have embraced their children with their heart and learned from them. Most of these stories are about men I have met from around the country and not here in Washington State. I want to protect the confidentiality of the men in this room.

When I was hired in 1986 I was assured there were requests for ten programs, to be established nationwide. There were none, except in the grant. I started calling around, makingcold calls. The reaction was almost universal: “men won’t come to support programs, let alone be a part of their child’s services” - never stated maliciously but just a belief that parenting was a mom’s job. I finally contacted a small early intervention program in Puyallup (south of Seattle) who said, “Sure, we can get some men out for an evening session.” Two days before the event I ended up in the hospital with a stomach bleed and flare up due to the medications for my arthritis. I convinced the doctor to release me if my daughter would do the driving.

We arrived at 6:30 that night, with no one there except the woman who set up the coffee. I was as pale as snow. At a little past 7:00 one man quietly walked through the door. The man was painfully shy and introverted. I don’t know who was more nervous, me or him. The silences were deafening. Finally he shared a few words about his child. I don’t even remember much about what he said. On the way home, my daughter asked me, “Dad, why are you doing this job?” At that moment I didn’t have a good answer for her.

On such humble beginnings began a national program, comprised of over 10,000 men from literally all over the world. By the time the national program finished in 1998 there were 106 programs established in 38 states! Don’t ever tell me men won’t attend support programs!!!!!!!

Finally I had an upcoming national training. I was pumped up but also very nervous. What if I flew across the U.S. and no one showed up? Ten men came into the room that evening, all with furtive glances at each other. One man was carrying a child in his arms even though we had no childcare available. I do remember her appearance. She reminded me of a fragile, porcelain doll. Not realizing there was no childcare, he held her in his arms cradled like a football. He almost never took his eyes off of her.

In almost two hours he never said a word. Finally, another man asked him if he wanted to say anything. Very hesitantly he talked about his “cloudy days.” His child had trisomy 10 and cri du chat, a very rare combination. They had gone through genetic testing and both disabilities were traced to him. One could almost palpably feel the guilt in his demeanor. As he spoke his voice became stronger, and he began to make eye contact with the other men. He acknowledged that he really didn’t have “cloudy days;” he had “cloudy weeks.” He never told his wife these feelings because he “didn’t want to burden her.” He spoke for about fifteen minutes, and when he finished, a man asked him whether he would return to the group. Immediately he said, “Of course. This is the first ray of light I’ve had in 18 months.”

I have learned that it’s the connection, the relationship that counts! Speaking for myself, life can get very lonely at times. Knowing that I can connect with someone else in ways that really matter makes all the difference. It allows me to be human, to ask for help, to give and receive support - to be fully understood. I came home from that weekend and told my daughter, “Now I know why I do this job!”

I am continually amazed and saddened at how isolated many men are. Raising kids is tough work, raising kids with developmental disabilities is doubly so! We need to share, talk, brag, and yes, cry at times. We need to learn from each other! I have heard such phrases as: "That I can’t control the disability still leaves me confused;" “Having a kid with a disability is like hitting the Red Sea and it doesn’t part for you;" “That I can’t seem to do anything just drives me crazy." Many fathers echo the lines of Henry David Thoreau, “Most men lead lives of quiet desperation.”

I went to Bangor, Maine in the dead of winter; I am not exaggerating when I say it was a near death experience. It was that cold, well below zero. My luggage was lost in flight and didn’t show up until the morning I left. Bangor is a blue-collar town, and most of the men in attendance at the first meeting worked in factories. Around ten men walked in and two men immediately recognized each other. “What are you doing here?” “Well, what brings you here?” Each man had worked side by side for five years and never once mentioned that they had a child with a disability. They left that evening very different people. They were not so alone. They had a unique camaraderie. Their child hadn’t changed, they had! They had built a relationship.

Bill Kegg, here today from Pittsburgh, came to his first WSFN conference five years ago. Out of that trip was born the fathers’ program of Western Pennsylvania School for Blind Children - an absolute marvelous place. Now Bill’s program eats a bit higher on the hog than our programs do. The night I was there they had steak and a decadent chocolate dessert. Six men were there, one fellow traveling 200 miles each way to attend. It was a convivial group and laughter was freely shared. As we went around the circle one man showed a picture of his three kids, but he only talked about two of them, including his daughter with special needs. He was very emotional.

As Bill and I were cleaning up, the man stuck his head back into the room, carrying the same picture. “You probably wondered why I didn’t talk about my fifteen-year old son. He died last year.” With that he broke down into tears. It was a moment of immense feeling and connection. As a species, men just do not have many places to grieve, nor do some think it is necessary. Just put your nose to the grindstone and work harder. No wonder we die five to six years earlier than women do!

I gloried in the humor and the celebration that men brought to their programs. Here are several examples of comments that cracked me up. Greg Burns, from this morning’s panel, once said his week was a “P & P.” When I asked him what he meant, he replied, “prayers and Prozac.” Another dad relayed this story. His child asked him, "Dad, are you a homosexual?" "What do you mean by homosexual, son?" "Do you have sex at home?" I could go on for another fifteen minutes. Yes, some of the humor is rather dark and even inappropriate; this is how men often convey their emotions.

As you well know, success for a child with disabilities comes in very different ways - often slow and measured from what typical children can do. Many men don’t talk about their children at work, because they know that in comparison their kids don’t measure up. My belief is that you men find even greater pride in your child’s accomplishments than most fathers do, because even the smallest stride forward is huge, even monumental.

This idea is encapsulated in a man with a large bushy beard who made it clear he wouldn’t sit in the circle with the other men. He never said why, but he just wouldn’t be a part of it. He was attentive and listened to the other men. At the end of the session I suggested we all talk about one or two things that makes us proud of our kids. “Let’s brag a bit.” He immediately bulldozed his way into the group and raised his hand. His son, as I remember, was fifteen and profoundly disabled. The man talked about the dreams for his son disappearing one by one. What he wanted was for his boy to “close his jacket” on winter days. Nothing seemed to help - buttons, Velcro, adaptive devices.

The last week he had come home from work and his wife said their son had a surprise for him. The man began to cry but without obvious embarrassment. His son could finally shut his coat. “It was one of the proudest moments of my life.” I thought to myself, only in a group like this one could that ever be shared, and ever be understood.

Another man shared his story about his nine-year old son finally being toilet trained. He hadn’t attended the fathers network in many years, but he called the school and found out there was a meeting the next Saturday. Upon arriving he realized he knew no one. But he knew he would be understood and welcome. With great relish he conveyed how proud he was of his son. Upon finishing there was a round of applause and high fives throughout the group. When he was leaving he said, “I might not be back for several years, but I know you will be here. Thank you!” Always brag and share your child’s accomplishments!!!!!

It would take me the rest of this afternoon and most of the evening to share all the other stories - filled with pride and learning. I would be remiss if I didn’t pay homage to the fathers raising children with HIV and pediatric AIDS. Most of the men were passing away from this terrible illness themselves, yet they lived with a grace and a passion that was simply stunning. Eddie, Travis, Ronnie - YOU WILL NEVER BE FORGOTTEN. The grandmothers who raised the children after the parents died are venerable souls to me. In the midst of dying there was always life!

A common theme in all these stories is how one’s child - the child with the disability - makes us a better people, better men. This doesn’t take away the difficulty or the pain, but our children become our teachers. For almost twenty years I have seen men “transformed.” A few years back a man wrote me this note:

"I can’t believe it’s been 15 1/2 years! I remember carrying my son into the school and not knowing what to expect. Here I am sitting on a chair in a circle with five or six dads sharing our experiences and problems. It sounds so simple but what a powerful effect it has. As I’m leaving the school with my son in my arms that Saturday afternoon I get the feeling that I’m closer to my boy than I have ever been since he was born, but I didn’t actually spend much time with him. Thank you."

You men have redefined what fatherhood is all about; in confronting the challenges of rebuilding personal dreams for your children, you have discovered the very essence of fatherhood, true manhood - strong and compassionate, thoughtful and feeling, engaged and fully involved. You are the most courageous men I know. As defined by M. Scott Peck, “Courage is not the absence of fear; it is the making of action in spite of fear.”

You are pushing past your lost dreams and finding new ones, perhaps even better than before. Your child has become your teacher, and many of you are better dads because of it! Thank you for being my role models.

I leave you with some final thoughts:

- Men, talk with your fathers, listen to them, find out what their fathers were like, what caused them to raise their children - and you - the way they did. Martin Greenberg says, “A son’s memories of his father are images that have a life of their own. Such memories hold the key to father-child bonding.”

- Men, talk with other men, and not just about sports, work, and politics. Mainly we need to talk about our emotions (yes, that "touchy feely” stuff). Lowell Streiker says: “Good fathering flows from the realization that being a father is important, vital, demanding, rewarding, and risky. Telling your story of what it is like to be your father’s son and your child’s father to another father and another, and listening to their stories in return is ultimately the only school for fathering.”

- We must learn and re-learn that asking for help is a sign of strength.

- We must be good partners in our relationships. We can cook, clean, shop, do diapers. Hey, it ain’t half bad.... really! And we need to continue to learn about managing our anger, the one emotion men have typically been given permission to show. We must not abuse our power.

- Hug your kids everyday. Tell them you love them, and then do it again!

And now I want to thank all of you with the debut of a new video: “Fathers Voices: A Journey of the Heart” This film was produced by Ann Hedreen and Rus Thompason of White Noise Productions. They are in the audience today and I would like them to stand. (followed by showing of the video)

Leadership never happens in isolation. I want to recognize the best group of men I have ever worked with and known. Special thanks to the WSFN Steering Committee members: Paul Blair, Roy Gonzalez, Spencer Hatton, Hugh Kelly, John Mahaney, Lance Morehouse, and Rudy Perales. Early steering committee members included Clarence Burris, Frank Jen, Robert Perretz-Rosales, and Juan “Jose” Pineda. In the Bellevue program my co-facilitators have been Paul Egly, Paul Blair and presently Jack Baker - da men! Please come up front and be recognized.

Thanks to the Kindering Center and Mimi Siegel for the two decades of embracing and supporting this program.

Last, but certainly not least, special thanks to my wife Gina for her unconditional love, care and belief in me and in this work.

I thank you, and the WSFN thanks you. May you all continue to grow in your journey of fatherhood, and may the Washington State Fathers Network flourish with new visions, new programs and means for enhancing the lives of all family members. You have blessed my life and I wish you all the very best.


October 23, 2004

This is copyrighted material and not to be re-printed without the permission of the author. Mr. May can be reached at: jmay@seanet.com