In commemoration of City Weekly's 40th anniversary, we are digging into our archives to celebrate. Each week, we FLASHBACK to a story or column from our past in honor of four decades of local alt-journalism. Whether the names and issues are familiar or new, we are grateful to have this unique newspaper to contain them all.
Title: Disabling the Handicapped
Author: Rich Tuttle
Date: Aug. 26, 1992
It's an unusually high stakes poker game being played in the reception room right outside Governor Norm Bangerter's office. The bets do not involve money, they involve competing interests. One player bets the pumps on the Great Salt Lake. Another throws a new office building for the Utah State Tax Commission into the pot, a project which has a higher priority on the State wishlist than the one these gamblers are worried about. The Utah State Capitol is a cold and empty place at 1 a.m., and the poker game is really just a way of killing time. The only people around are the security guards, some maintenance workers and, of course, the 13 disabled people who are participating in a two-day sit-in.
Earlier in the day, there were more than 40 disabled people pushing their way into the office and demanding to see the Governor. THey had come to insist that Governor Bangerter use his power to release $3.8 million to cover a shortfall in the State Medicaid budget. The Governor did meet with them, but, as expected, he is unwilling to act until the official budget figures are released in the middle of September. In the meantime, the cuts will go forward.
As most people know, the real problem is the skyrocketing cost of medical care, but politicians find it easier to cut programs than to get control of medical costs. This is the fourth year in a row that Medicaid has been threatened. In the last three years, the Governor and the Legislature have worked out an informal agreement to cover the recurring shortfall in Medicaid benefits.
But this year, thanks to people like Representative Craig Moody and the Health Services Committee he chairs, the leaders have decided to take issue with the Federal government by refusing to pay an additional State share of the Medicaid budget. The politicians took this stand on the grounds that the Federal government was requiring greater benefits without providing additional funds.
Debbie Bettess, Jim and Linda Avery, and Ted Loosli are part of the sit-in; they've been radicalized by necessity. All are members of the Disabled Rights Action Committee. DRAC is an organization that encourages activism on the part of disabled people. For many of the people in the Governor's office, this is the first time they have been forced to take such radical action. Several of the members came from groups like the Independent Living Center, the Easter Seal Society, and the Blind Center. But those organizations are primarily service groups not meant to apply political pressure, and it is for that reason an organization like DRAC was needed.
Debbie is blind; she was disabled because of an injury at birth. Born three months premature, she experienced some respiratory distress that required the use of an incubator in a local hospital. Unfortunately, the oxygen mix was set too high, and oxygen poisoning destroyed her optic nerves and caused her to lose her eyes. As she got older, other problems began to develop, which included a degenerative joint disease that contributed to the amputation of the little finger on her right hand, and occasional seizures that have progressively led to a constant need to use a wheelchair. Debbie looks younger than her 33 years, and upon first meeting her, many people don't realize that her green eyes are not real.
Debbie has a long list of accomplishments. She received a bachelor's degree in Music Education, and master's degree in Recreational Therapy. Even with all the hard work and academic credits, Debbie is unemployed. Like 70 percent of the disabled people in Utah, Debbie has been unable to find a regular job and is totally dependent on Social Security and Medicaid.
"If you had told me six years ago that I would be involved in a sit-in at the Governor's office, I would have said you were crazy," said Ms. Bettess. "But six months ago, I would not have believed that our state leaders would put me and other disabled people in what might be a life-or-death situation."
Many members of the group believe that the leaders in the State of Utah play a cruel and cowardly game with poor people's benefits, and that game has the real potential to cost some lives. Experience has taught them that part of the problem with being disabled is that every time a politician wants to show the public how they can save tax money, it is the poor and disabled who are targeted to lose the few benefits they have. Debbie believes that if Medicaid benefits had not been cut in past years, she would still be able to walk, but Medicaid will no longer pay for physical therapy.
Although most members of the group have tried to sleep, the hard marble floors of the Capitol are not a very comfortable place to rest. The day's activity has left them tense, tired and a little punchy. Sit-ins tend to alternate between boredom and excitement. There is a basic tension that connotes the importance of the issue. The symbolism of the act is timed to news broadcasts that provide the opportunity to let the public know that, behind the cold dispassionate numbers, real people are suffering.
Ted Loosli has also learned how hard things can get for disabled people. In 1988, he was riding a three-wheel motor bike when it overturned and shattered some of the vertebrae in his neck. Since the accident, Ted has been paralyzed from the neck down, but with hard work and stubborn determination, he has retained some movement in his arms. His motorized wheelchair is a marvel of technology that makes it possible for Ted to move around with minimal assistance.
Before the accident, Ted was a printer. After a long recovery, which included vocational rehabilitation and physical therapy, Ted was able to return to work. Most of the work could be done over the phone, and Ted could complete orders with a voice-activated computer. Unfortunately, although the software exists that would make Ted's work possible, the particular computer program that Ted used was not suited for the type of work that he was doing. It was cumbersome and time-consuming. Over a period of time, and out of great frustration, Ted finally realized that he would no longer be able to do his job. Now he is a consultant for organizations and businesses that are trying to become more accessible to handicapped clients. He has recognized that most employers are hesitant to hire disabled workers because of the cost involved with acquiring the needed equipment. Although Ted is not on Medicaid, he felt that he should join the protest because so many disabled people require Medicaid benefits to maintain themselves. As many as 40,000 of the 229,000 people in the state who are eligible for Medicaid will start to receive notices of reduced benefits in the next few weeks. Many are poor parents and their children. These cuts could mean the difference between people who can live independently or being forced into a nursing home. Attendant care is much less expensive than a nursing home because the attendants are only needed to help people get in and out of bed. But if the cuts go through, those people who use attendants will have to make a co-payment that could take as much as $60 per month from their $427 per month disability payments.
Jim and Linda Avery know too well what a problem the loss of Medicaid benefits can cause. In 1965, Jim was a successful businessman in Provo. He was the program manager at a radio station, owned a record shop, and a teen night club. He has a beautiful, forceful, silky, baritone voice, perfect for radio work. But with frightening suddenness, that life came tumbling down when Jim suffered a brain hemorrhage.
"I was lucky to survive," said Jim, "but I did sustain some permanent brain damage." To look at Jim, except for a small aging scar near his right temple, there is no obvious sign that he is disabled. He has a quick wit, a warm smile, and he never lets the seriousness of the issue affect his upbeat attitude. But Jim knows how quickly illness can change a life. One day he was on top of the world, and the next he was thrown into abject poverty, had lost much of his short-term memory and ability to cope with details. His income went from $40,000 per year to $1.65 per hour working at Deseret Industries. It was there that he met Linda.
Linda was disabled at the age of six when she was hit by a car. Her injuries were serious, and over time her disability has become more profound. The day after she and Jim returned from their honeymoon she had a stroke. She walks with a cane and has been progressively losing her sight and hearing. She also has severe asthma, which requires special breathing equipment when she has an attack. In 1989, Medicaid changed the rules and forced people to re-qualify every six months. There is usually some lag time for the paperwork to be processed which means that many Medicaid recipients lose their benefits for a few months each year. For Jim and Linda, the time required to re-qualify meant that they must pay their own medical costs part of the time. The result: they have had to move six times because they couldn't pay their rent while they were waiting for the paperwork to go through. If the most recent round of cuts go through, Linda will not be able to replace her breathing machine, and may be forced into a nursing home in order to get the benefits needed to pay for the various medications and equipment she needs to sustain her life. It is these life-and-death circumstances that have brought her and the other protesters to the State Capitol.
This is not the first time these people have had to fight to get politicians to make good on their promises. They recently had to protest the potential loss of housing on Block 49, where Mayor Corradini wanted to build a speed skating oval. It took six years to develop a plan that included 38 handicapped accessible housing units in the abandoned housing complex next to Pioneer Park. It is a fight that is not over, and DRAC members have written a petition that, if passed by voters, could prevent the city from making a bid on the 2002 Olympics.
By four in the morning, most of the protestors are holding a strategy meeting under the Capitol dome. Fatigue is affecting their ability to stay on the subject, and conversation tends to wander. Just as the group had run out of things to say, Jim told a joke that caused everyone to laugh. Debbie laughed so hard that one of her false eyes popped out and rolled across the marbled floor. The group fell silent as someone grabbed the wayward eye and handed it back to Debbie. After a quick inspection, Debbie put her eye back and the whole group started to laugh again. But it could have been a tragic situation. Medicaid will no longer pay for prosthesis, and if the eye had shattered, Debbie would have had to find a way to pay $750 for a replacement. But she, too, only receives $427 per month from Social Security.
Ted has a goal of being the first person to sleep under the dome of the Capitol. His chair can recline into a sleeping position, and he made an effort to place himself directly under the chained chandelier in the center of the dome. (They later learned that Ted was the third person in recent history to spend the night under the dome. The first was Reverend Harris, a former Legislator from Ogden, who had a reputation for lying down in protest over several social justice issues. The second was Governor Scott Matheson who, upon his death, lay in state for two days under the capitol dome.)
But most of their time is spent planning the next action. "We will continue to disrupt things," says Debbie. Any inconvenience we cause these people is minor compared to the disruption they cause us every day." Most of the others agree that they must take radical steps to change the way the politicians and institutions do business. They want to put a face on the numbers when decisions to cut programs are made. They also believe that decisions that hurt people must be confronted immediately.
Their action at the Capitol is a warning to bureaucrats and politicians that they can't make decisions in a vacuum. If they do, there is a good chance they will be met by a new group of angry, wheelchair radicals.
