Dave Bakke: Kathy’s spirit lives on in Diana
Exerpted from the State Journal-Register in Springfield, IL
September 23, 2009
Dave Bakke: Kathy’s spirit lives on in Diana
“The framework that society has set up for people with disabilities is meant to help them. Diana Braun and Kathy Conour found it suffocating.”
Thus began a 1999 story I wrote about two remarkable women who became as one. Diana has Down syndrome, but is physically mobile. Kathy’s cerebral palsy put her in a wheelchair, but did not diminish her intelligence. One was the body. The other was the mind.
The two met at the Dixon Developmental Center almost 40 years ago and formed a team that enabled them to live in their own home in Springfield, free of any institution. They had already seen enough of that life.
It ended Saturday, when Kathy died at Memorial Medical Center in Springfield. Her obituary can be found here.
“She’d been preparing herself for a long time,” says Kathy’s cousin, Springfield dentist Dr. George Conour. “Her health was continuing to decline.”
Kathy’s death comes just a couple of weeks before “Body & Soul: Diana and Kathy,” a documentary film of their life together, will make its nationwide debut on public television. Locally, it will air on Tuesday, Oct. 6 at 9 p.m. on WSEC and several times on Thursday, Oct. 9 on WILL’s various channels. Check your local listings, as the saying goes.
From that 1999 story: Pete Roberts, director of the Springfield Center for Independent Living said, “ … two people with disabilities – one with a physical disability and one with a cognitive disability – getting together … The reality is that it doesn’t happen often because you can’t legislate friendship. I’ve spent 25 years looking at this issue. I don’t think I’ve ever seen a relationship quite like this.”
Diana called last week to let me know that Kathy was in intensive care at Memorial. She said they had been eating in a restaurant when Kathy “turned blue.” Kathy never regained consciousness before a fatal heart attack ended her life at the age of 66.
Kathy was a Springfield native, an only child. Her cerebral palsy didn’t stop her from becoming a college graduate. The fact that she lived far longer, probably 30 years longer, than the normal life expectancy for someone with her form of cerebral palsy was due mainly to her friendship with Diana. With Kathy’s severe rigidity, living to the age of 66 is off the charts.
Kathy’s late mother, Josephine, had been adamant that Kathy would never be put in a nursing home, but even Josephine was never sure that her daughter could ever live in her own home until she saw it happen. The irony was that Kathy lived long enough to see her mother enter a nursing home.
Kathy and Diana became effective advocates for disability rights, speaking at conferences and attending showings of their movie in Illinois and across the country.
To Diana, Kathy was “Kath” or “Ding Dong.” Every day began with a ritual in which Diana helped Kathy prepare for the day. In their younger days, Diana physically lifted Kathy out of bed. By the time I met them 10 years ago, Diana was using a mechanical winch to do the lifting because her back was shot.
From 1999: “From her bed, Kathy watches the Home Shopping Network while Diana prepares the coffee, rolls and pills. Diana puts the pills in Kathy’s mouth. Kathy drinks her coffee through a straw; Diana holds the cup.”
After that first story, I would sometimes get e-mails from Kathy about disability issues. In a wry touch, her e-mail name was “bytchee.” She laughed when I asked her about that. She laughed often when she was feeling good.
After Alice Elliott, a New York filmmaker, came to Springfield to document Diana and Kathy’s life together, there were more stories to be written. The film is moving and funny and inspirational, just as the women were.
“’Body & Soul: Diana & Kathy’ will tell everyone of (Kathy’s) courage and humor,” Alice said in an e-mail after Kathy’s death. “I’m in shock, as you can imagine.”
When I talked with Diana on Monday, she and George Conour had been busy making arrangements for the funeral, which will be Friday morning. It was a difficult experience.
“I’m shot to pieces,” Diana said. “I was not ready at all.”
Realizing that this time would come, arrangements had already been made. Kathy’s will stipulates that Diana will continue to live in the house. A trust has been set up to help with her living expenses.
One last excerpt from 1999: “Someday, Kathy and Diana will be buried side by side. Until then, they can look back with satisfaction on two lives lived exactly the way they wanted to live them – free.”
Though Diana has lost her co-pilot, she is determined to go on by herself as much as she can. She is already making plans to attend a disability rights conference in Utah that was scheduled before Kathy became ill.
“I’m not going to let anything stop me,’ she said. “I’m going to keep on going.”
Though Kathy’s body is gone, her fighting spirit will still be with Diana, urging her not to give up.
Everybody has a story. The problem is that some of them are boring. If yours is not, contact Dave Bakke at 788-1541 or firstname.lastname@example.org. His column appears Wednesday, Friday and Sunday. To read more, visit www.sj-r.com/bakke.