Charles always rocks back and forth when something excites or upsets him. He often sucks his lips around his toothless gums, looking like a hungry baby bird waiting in the nest. This morning, in the bright summer sunshine, he is moving ferociously in his green plastic chair, his feet tapping the flat gravestone in front of him in a two-second rhythm. The thump of his shoes barely masks his soft, wailing questions.

“Where’s Starr? In heaven? God took him?”

Jonathan Palmer, wearing a long-sleeve black shirt that hides his tattoos, moves to comfort Charles.

“He’s in heaven, buddy,” he says, rubbing Charles’ shoulder.

Throughout the funeral, Charles continues to call out for his dead friend. Over the caretaker’s six Hail
Marys, his voice can be heard.

“Where’s Starr? In heaven?”

His watery brown eyes look off in the distance, scanning the hills and sky, and never settle on the plastic box in front of him that contains the ashes of Robert Starr.

The Potrero Hill Neighborhood House balances on the top of DeHaro Street, a dark brown gingerbread-looking building that has been a community center since 1925. One of its main features is a day program that focuses on art and recreational activities for developmentally disabled adults. Lately at the Neighborhood House, there has been a disruption in the usual routines.

Three people have died since Christmas. It has been a shock to everyone, since none of them were obviously sick. The loss of Cecilia, Robert and Bill has cast a quiet gloom over the program.

Our culture has a long history of ignoring or ostracizing people with developmental disabilities. Until recently, little thought was given to their emotional needs. Therefore, few programs have support services to deal with sadness and loss. But it is clear to the staff at the Neighborhood House that the clients are grieving, and they encourage the clients to share their feelings. Day by day, expressive art and music is replacing their pain and fear and everyone is learning to appreciate life as it happens.

After hearing the news about Robert, Monica dips her paintbrush into the red, non-toxic paint and works on a giant piece of paper with large, sweeping strokes. It is a patchwork painting of green, red, yellow and brown starbursts that reach out across the paper. On the bottom, her shaky handwriting forms a title.

“All my friends are kicking the bucket,” it says.

Monica scrubs green paint off her wheelchair with a paper towel. A sensitive person, she always paints a memorial picture when someone dies. But this one seems to be for herself. Monica says it is making her feel terrible, all this bad news. She adjusts her glasses and sighs.

Some of the clients are old-timers here; they have come to the program for 20 years or more. Their friendships are quiet and subtle, but apparent to most people after a period of time. Like Dickie Lee and Monica who eat lunch together every day and gossip about the staff at their group homes and their roommates. Or Albert and Joe, both in their mid-70s, who have been friends since childhood, even though their childhood was spent in an institution in Sonoma and was not exactly happy or carefree.

Bringing up the subject of death is often difficult. Some of the instructors use art as a way to get the clients to express emotion while others use music. Max Doyle, 24, an instructor and a guitarist in a metal band, wrote a song with Charles in memory of Robert Starr. Since both Charles and Robert love Johnny Cash, it is sung country style and has Robert drinking whiskey in heaven.

There have been many paintings of God done recently. Albert is doing memorial portraits and Rene has made several drawings of war and its consequences.

Rene, flipping her black shaggy hair out of her eyes, will tell you straight off her impressions of life and death.

“John F. Kennedy, he’s alive,” she shouts. “Bob Hope, he’s alive. And Martin Luther King, he’s alive too!”

Rene grew up in Queens in the 1950s, and holds on to her favorite people with a firm conviction that they haven’t left her; they are still living. And in some ways, they are. Rene’s memories are so vivid that she brings people back to life as she talks about them.

“John F. Kennedy is alive. I saw him this morning.”

When she was told about Robert Starr passing away, Rene had a soft dialogue with herself while biting her fingernails.

“He’s dead, Robert Starr. He died in the hospital. He was my good friend, Robert Starr.”

Then she goes back to her security blanket, John F. Kennedy, drawing a black swirly bubble picture of him on blue construction paper.

Rene’s attachment to Kennedy is amazing. He is her Irish friend. And he is definitely alive. Except that Rene remembers when he was shot in Dallas. She was listening to the radio at her grandmother’s house and “crying my eyes out.” But she doesn’t care to balance her real memory with what she wants to believe. Or maybe she just wants to argue with people about who is alive and who is dead. Rene is mischievous in that way.

She will go up to Dickie Lee and say, “Ray Charles is alive.” To which Dickie Lee will yell, “No, he’s not! Get out of here, Rene!”

Dickie Lee is an ornery 56-year-old, whose dark hair is sliding towards gray. He has a passion for music. Every thought and emotion has a song to go with it. For the past few weeks, he has been singing, “Ain't No Sunshine When She’s Gone," since the sun and his friends have gone away. His idea of heaven is a place that has nothing but “peace and quiet” and good food, like “macaroni salad.”

Dickie Lee takes a practical approach to the death of his friends.

“When you gotta go, you gotta go,” he says. “No use crying about it.”

He, on the other hand, is going to live forever.

“I’m staying alive. I’m staying alive like the Bee-Gees, singing, ‘Staying Alive.’”
Sara Page, a program instructor for Monica, has had a harder time coping. She is unsure how to counsel the clients about their recent losses.

“We tell them, and then walk away. They are left to deal with it on their own, in whatever way they can,” she says with frustration. “I spend six hours a day, five days a week with these guys. I consider them my friends. There has to be a better way to do this.”

Ideally, Page would like to see a grief counselor come in and teach the staff methods they could then apply to the clients. She would also like to see coordination between the homes and the social workers to get everyone involved in times of crisis.

Ted, who goes to church every Sunday, has a traditional view on death.

“When you die, you go to heaven and see Jesus, Mary and Joseph,” he says.

Ted imagines heaven to be full of fluffy white clouds to sit on. Hell is a place you should avoid because the “devil is crazy,” he will make you do things you don’t want to do. Ted says that heaven is open for anyone who is good.

Right now, it seems like the best way to confront death is to celebrate life. The instructors are making “memory” books for the clients so each person can draw and write about their life. The idea is to share it with other people and talk about their experiences. Birthday parties will continue, and so will memorial services.