It was 15 years ago that Karol Hays got the diagnosis: multiple sclerosis.
"I was 25," she remembers. "I decided it was time to travel the world. I immediately ran to the Virgin Islands, Morocco, any place. I had to live fast. Who knew when it could end?"
Karol Hays won't be going to the Virgin Islands any time soon, if ever again. Her illness has weakened her, massively and irresistibly.
Pay her a visit, and she will shake your hand firmly, like the young businesswoman she used to be. But a handshake is one of the few physical acts that Karol Hays can manage unaided. "I spend most of my time in bed," she says. "That's not exactly the way I had it planned."
Still, Karol Hays is luckier than most of the 30,000 handicapped people in the Washington area. She is one of five women living at an unusual group home for the handicapped in American University Park.
The goal of the home is to allow the handicapped to be as self sufficient as they can be. The home, operated under the auspices of an agency called Independent Living for the Handicapped, is the only one of its kind in the Washington area.
At hospitals and nursing homes, a paid staff does almost all the work and patients often feel like projects rather than people. At 4815 Chesapeake St. NW, the atmosphere is as dynamic as a college dormitory.
Want spaghetti for dinner tonight? There's a consultation most afternoons, and whatever the decision, the hand on the frying pan belongs to a resident, not to a nurse.
Am I playing the radio too loud? Should I invite my son and his girl friend to visit me on Saturday, or should I make it Sunday? Can you lend me five bucks? These are the kinds of questions that are called out from wheelchair to wheelchair, from friend to friend.
As 30-year-old Eileen Winters describes it: "Living here is a lot of fun at times." Adds Karol Hays: "If I had been in a nursing home, I would have been in a sterile room with two other people, no peace of mind, no privacy. If this place hadn't been here, I'd have been up the creek."
The place is there largely because Beverly Price wouldn't allow it not to be.
The mother of a 32-year-old handicapped son, Price is a stylishly dressed, decorously spoken woman who wouldn't be a bit out of place at a Junior League dinner. But she is a slugger and a slogger.
She obtained a $90,000 federal grant to rehabilitate the Chesapeake Street house by relentlessly lobbying the City Council. She looked at 258 houses all over the city, day in and day out for more than year, before choosing Chesapeake. She is so dedicated to the handicapped that, every election day, she ferries handicapped D.C. voters to and from the polls in her specially equipped van. If you are looking for heroines, look no further.
Price rejects the suggestion that she is a spark plug. "The disabled people in ILH are the ones who push us along, not vice versa," she said. "We're not trying to be do-gooders.
"We're pioneers, really. Do the handicapped really want this? Would they rather sit at home and tell themselves that they really want to live with their parents? How much dependency is really there? Those are the questions that we're trying to answer."
Of course, the goal of self sufficiency will never be reached at the Chesapeake Street house. Eileen Winters, who has cerebral palsy, can dress herself, put on her own leg braces and make one heck of an omelette. That puts her far ahead of Karol Hays and the other three residents of the house.
But there are dozens of acts, routine for others, that would be fruitless for Eileen even to attempt. Five fulltime staffers and between 10 and 12 volunteers work at the Chesapeake house. They are careful to aid the residents, not to jump in and do tasks for them. Still, without the staff, the members of the household simply couldn't function.
But look at it another way: without Chesapeake, there wouldn't be a shred of brightness in the lives of five people. A few years ago, says Karol Hays, looking up from her blue floral-print sheets, "suicide was a very real possibility. Not now. Not at all."