That Went Well: Adventures in Caring for My Sister (7 page)

Meanwhile, it was time to start our next phase of the plan: let mentally disabled children go to school with normal children.

At first the whole idea sent the parents of normal children, and their teachers, into a state of panic. How could a teacher accommodate this in a classroom? The answer came from stacks of research, much of it in Europe, pointing out that the mentally disabled make up about 3 percent of any population; so if you have a classroom of thirty “normal” children, chances are you’ll have only one mentally disabled one. If you as a teacher do nothing but just let him sit there, he will absorb the behaviors of the other children and start to improve and learn little bits on his own. Contrast that idea with bundling all special-needs kids into the same room, where they each pick up the others’ odd behaviors and learn more odd behavior.

It was an idea whose time had come. Pennsylvania had already passed a law allowing this to become a reality. We wanted Utah to be next.

How could we convince everyone to let all children go to school? We decided to apply Glenn Latham’s behavior modification treatment to government officials, reporters, and legislators: we caught them doing something right and thanked the hell out of them. If a reporter put something good about our programs on the news that night, we would instigate a phone-calling or letter-writing campaign to thank him for his incredibly insightful report. If a legislator spoke even one sentence of approval for our ideas, she would get notes and calls of praise.

This startled the legislators and heads of government, who were used to receiving only criticism and pleading. Pretty soon, whenever they’d see us in the halls of the legislature, or in their waiting rooms, or in the newspaper offices, they’d say, “Well, hi. What can I do for you?”

With that sort of support, we were able to convince the Utah
Legislature to pass House Bill 105 in January 1969, entitling
all
children to a free public education, including the mentally disabled.

After a few years’ hard work on the part of parents in all over the country in the ARC, Congress passed Public Law 94–142 in 1975, and now every state had to follow suit.

We in Utah even went so far as to suggest that special-needs children who lived far from school needed to be taken by bus, the way the other children were. The school district officials agreed, after much praise from us all for their caring foresight.

The head of the bus company at the time, Charles Boynton, was nervous about being able to get enough buses and competent drivers to handle all these kids. But at the end of the first day of service, Charlie called me and said, “Well, we did it. We only have three sack lunches, two apples, and one kid left over.” (The kid was rescued shortly, happy as could be that he got to ride on a real bus by himself.)

We didn’t stop at just sending Charlie a thank-you note. We decided on a grander idea, a better way to thank all the people who cared for this cause as much as we did.

We decided to hold an awards luncheon every year. We would call it the Don Quixote Luncheon, because many people felt that pushing for community programs for people whose brains were damaged was definitely just tilting at windmills.

Fifty people showed up at the luncheon. I welcomed them, and after lunch I introduced Robert Peterson, a magnificent and well-loved baritone actor who had appeared as Lancelot on Broadway and starred in
Man of La Mancha
locally many times. He thanked everyone in the room for what they did for mentally disabled citizens. When he sang “The Impossible
Dream,” a lot of hankies came out. Then we awarded our little wooden statues of Don Quixote to a variety of people who had done major things for us that year: a legislator, a TV reporter, a small-business owner who hired a special-needs person part-time, and, of course, Charlie the bus man. We described all the good they had done. We clapped for them. I still see our little wooden statues in offices downtown.

Another thing we did in those years was make close friends with the local and state officials who ran services for groups that might include the mentally retarded. We invited them to speak at our local and regional conventions. One year, at a meeting in a mountain resort in Colorado, we made good friends with Evan Jones, a very intelligent, friendly man who ran the Division of Family Services for Utah. Over dinner one night, he announced that he didn’t think he could support our programs completely the following year, owing to budget restrictions.

We told him, laughing, that there would be consequences if he did not include every soul who needed services. He said supporting all the programs we wanted was going to be impossible.

That night, some of our group entered his hotel room and short-sheeted his bed. How they got into his room, I’ll never know. I was horrified. But the next day at the luncheon, where he was the speaker, he spoke of the hazards of working with folks in the ARC, who were bent on doing right by our citizens who could not speak for themselves. He then reported the short-sheeting and laughed. It was very curious: for some reason, instead of being insulted and offended, he felt pleased to be a part of our riotous little gang.

And oh yes, P.S.: we got most of the people on the list served that year. We learned there are many ways to get things done.
Nationally, parents in other states were matching our work stride for stride (though possibly they drew the line at short-sheeting beds). It was exciting work and we considered our job done. These young people and adults would be cared for in day programs always and forever.

We were so naïve. We didn’t realize it takes eternal vigilance.

“N
ever doubt,” said Margaret Mead, “that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” She also said that in those years the National Association for Retarded Citizens was the most effective voluntary action group in the country. I was honored to be invited to be on their national board, and I traveled to meetings twice a year and enjoyed every second of it.

Mom worried that I was spending too much time on this effort when I could be doing other things. “What other things?” I asked.

“Well, you’re a writer.”

“I’m writing a column a week! What more could you want?”

“Well, I don’t want you to neglect your children or husband.”

“Mom, we’re fine. I’m the Brownie leader! My girls are not neglected.”

“Your own daughter just resigned from the Brownie troop.”

“Now don’t pin that on
me.
Marriott is not a joiner. I can’t help that.”

Dad worried too. “Irene’s away at Devereux now. Why would you put so much effort into this movement when you don’t have to?”

“Dad, listen to me. I did not finish my Stanford education, and I’m still doing dribs and drabs of classes to graduate from the University of Utah sometime in this century. I want you to know that I am now getting the education of my life, on how politics work, how you get bills through the legislature, how you effect social change. Stanford was
nothing
compared to this.”

It was true. I learned more about how government works by being a volunteer with this group than I ever could by taking political science in college. This was front-line stuff. I learned who the players were and how to make friends and influence people. I reminded Dad of Bobby Kennedy’s famous campaign question, which he applied to the whole nation as he ran for president: “If not us, who? If not now, when?” That’s how this work felt for me and for the folks I worked with.

Irene was still at Devereux. Mom and Dad and I went to visit her one family weekend when she was in the chorus of
The Mikado.
She proudly showed us around backstage, and then took us to her room, which she shared with another girl. I could see the girl hurry to leave as Irene came in. The room was neat and clean. We had hopes, for just a minute, that Irene was happy there. But then she sat down on the bed and said, “When I’m coming home to live with you again?”

“Honey, don’t you like it here?” Mom asked, sitting down by her and putting an arm around her.

“I want my own room, Mom.”

Our hearts hurt. We all want a room of our own.

Later, when we met with her staff, we learned that she hit her roommate often. They had tried bribery, withholding of privileges, everything they could think of to stop the behavior, but it wasn’t working. Also, they had to shower her every morning, instead of letting her take her own showers. They said her personal hygiene was just not good, that she needed to wash the parts of the body that needed it, and she never did. She screamed every time they did it for her.

I think I would, too. But how else could she keep clean?

We left her there, but I knew Irene would love to have the chance to live in her own community and not be isolated on a campus far away, pretty as it was. Mentally disabled adults whose parents are aging and dying need community group homes.

In Utah in those years, most of the state funding for the mentally disabled was sent to the state training school in Utah County. A certain state senator from that county had most of his family members working at the school. The idea of allowing the communities to set up group homes for this population would be okay,
as long as it was funneled through the state institution
. One always wants first cut of the money, of course.

So the state institution had a complete hammerlock on all community services, and the officials dragged their feet on setting up any services outside Utah County. The good senator even thought of a hugely expensive park and playground “for all of Utah’s handicapped children.” It would, of course, be placed
on the grounds of the state institution!
And even more marvelous was that the man chosen to head up this grand new park was the senator’s brother.

It seemed a perfect idea to the senator, who was very powerful in the legislature and had a lot of favors to call in. While our group tried our best to explain that physically and mentally handicapped children would really like to play in their local parks like everyone else, our voices were summarily dismissed and the park funding sailed on through. Our dream of group homes in communities all over the state was fading fast.

But we were wrong. The National Association for Retarded Citizens, bless their fantastic little hearts, working in Washington with Congress, sent something our way that changed everything forever.

It was a grant application. It was called Projects of National Significance: Community Alternatives to Institutionalization. Only community people could apply. Not institution people. It came to our Council for Developmental Disabilities, whose executive director, Elizabeth Lowe, saw the whole picture of institution versus community clearly and saw her chance to help us.

We had nothing going for us except a passion for community programs and the help of Elizabeth, along with one other spy inside state government, Geri Clark, who had orchestrated all the arrangements for Columbus Community Center from behind the scenes in the state board of education. Geri had also masterminded the passing of the bill that allowed the mentally disabled to attend school.

Late one night, Geri Clark got a phone call from Elizabeth Lowe. She was whispering, as if the senator and his family might be tapping her phone. And she told Geri about the grant. “Who can write this fast and get it in the mail by midnight Monday? And it has to be signed by the governor.”

I was home saying good night to the girls. Geri called me and
said, “Elizabeth will meet you at the Hotel Utah coffee shop at eight a.m. and hand you a grant application. Grab it and get out to my house immediately.”

“Oh, okay,” said I. We had all learned to take orders from Geri. She was just like the Godfather. “What’s it for, and are you going to write it?”

“It’s for group homes, run by the community, and no, you are going to write it.”

“I have never written a grant in my life.”

“There’s a first time for everything. See you about eight-thirty.”

Geri had been so good, so successful at getting done what needed to be done, you just didn’t say no to her. I canceled all my plans for the next day and in the morning met Elizabeth, who quickly handed me the application as if handing over a spy document, and hurried away.

Geri and I waded through the instructions. The grant seemed as long as a Tolstoy novel to us. We had absolutely no idea what we were doing. She kept pouring coffee for me, fixing me soup and toast, and telling me, “You can do this.” We used the model of the Eastern Nebraska Community of Retardation, ENCOR, which had started the whole ball rolling three years before, using the research of a French outfit called L’ARCH. The French showed the amazing progress and financial savings that happen when you give mentally disabled people a chance to live in their own communities in the least restrictive environment. These group homes were staffed by young French people who loved being able to make a difference in the world. It was a model that changed the world for mentally disabled people. The
key phrase was “least restrictive environment.” Well, don’t we all want that?

We wrote and wrote for a week. My children went to school looking ragged. Paul did what laundry he could, and burgers and pizza were our fare. Every day for a week, I drove out to Geri’s and she fed me and urged me on. At night I would take it home and rewrite, trying to fit in all the buzzwords they wanted: independence, new skills for community living, integration into community, and so on. I must have managed three hours of sleep a night, but by Sunday night I retyped the whole thing (this was long before computers), and on Monday I called Dad.

I told him what I had been writing. I told him it was vital for all the kids like Irene, and I needed him to call Governor Cal Rampton, who knew and liked Dad, and tell him we needed his signature by tonight. Remembering how our group had hounded the governor with all our letters urging change, I wasn’t sure he’d see me alone.

Dad listened, hearing the exhaustion in my voice, and said, “Okay. I’ll call you right back.” He and Cal Rampton had known each other a long time.

That evening we went up to the State Capitol Building, where the governor was working late. Dad took his watch off and put it on the governor’s desk. “Cal, I am going to take exactly seven minutes of your time, and then leave you be. You know I don’t ask you for many favors, but I’m asking one tonight. Listen to my daughter.”

I explained what we had in front of us. I told the governor that by starting this project, we would be starting a new phase in caring for the disabled, in their own communities.

“This system of group homes will cost about half of what institutionalization costs,” I told him. (Current costs for institutions per person: $410 per day; community group homes: $250 per day, in Utah, anyway.)

“If you get it, it will probably break the back of the institution,” he said.

“That’s right, Governor. In time that will probably happen.” My heart pounded. I knew the parents’ groups had annoyed him with so many letters.

The governor rolled his office chair around to stare out at the valley for a minute. Then he slowly turned it back, looking through his bushy eyebrows at Dad and me. “And you know this is going to infuriate a certain senator, don’t you?”

“Yes, sir,” I said.

Smiling, he took out his pen.

“Let’s do it and see what happens,” he said.

“Thank you, Governor,” Dad said, taking his watch back. We shook hands and Dad drove me to the post office, where we mailed it before the midnight deadline.

At the next meeting of the Developmental Disabilities Council, a delighted Elizabeth Lowe announced that the Utah ARC had been awarded an $85,000 grant for community group homes. The head of the state institution turned four shades of purple, stood, and slapped the table. “Why was I not informed about this grant?”

“Look at the title of the grant,” I told him, and handed it to him. “It’s “Community Alternatives to Institutionalization.” Community people had to apply.”

A lot of murmuring, shouting, and head shaking went on as
the institution people had a little tantrum. Then we ended the meeting. Community group homes would become a reality.

We called ourselves Project TURN: Teaching Utah’s Retarded Normalization. The parent who named Project TURN, Fran Peek, was the father of Kim, who was attending Columbus Community Center. Kim can remember everything he’s ever read, and his mind counts like an adding machine. He is a walking encyclopedia of facts, dates, and names that he never forgets. His favorite reading at that time was phone books from any city, which he’d read in a couple of hours and memorize completely. The staff at Columbus saw the possibilities in Kim, and he became their filer and office payroll chief. He could do all these things, but in between, would hum and look hard at the palm of his hand. With all his talents, Kim could not dress or bathe himself.

In the future, Kim would go on to make history.

Kim’s condition is now called “prestigious intellectual mega-memory savant.” Fran and Kim were attending a national ARC meeting and met screenwriter Barry Morrow who had heard some of the amazing stories about Kim’s mind. “I want to make a movie about this,” Barry told Kim’s father.

Soon Kim found Dustin Hoffman following him around for weeks, learning Kim’s behaviors for the role of Raymond Babbit.
Rain Man
won five academy awards. At the premiere, Kim said, “Hi, Dustin. You’re the star!” Dustin wrapped his arms around Kim and said, “I may be the star, Kim, but you are the heavens.” Dustin told Fran, “You’ve got to share this guy with the world.” And Fran has done just that: working with special-education teachers, they developed a plan to teach students and everyone that “it’s okay to be different, because everybody is different.”
Kim and Fran have interacted with over 4 million people worldwide in the past nineteen years, and have logged nearly 2 million miles. Kim lets everyone hold Dustin’s Oscar, which Dustin gave to Kim.

But in the late 1970s, people were still afraid of people who were “different.” For us working on Project TURN, convincing the neighbors that we would be good neighbors, too, was an experience in itself. We have battle scars from neighborhood meetings. “Not in My Back Yard!” became the worn slogan heard over and over. Trying to convince people that retarded people are okay was a challenge. (“But just because he looked funny walking down the sidewalk, Mrs. Parsons, didn’t mean he was drunk and disorderly, really. That’s just the way he walks. You didn’t need to call the police. He was just going to his bus stop to go to work.”)

The police learned to know and protect these citizens and became their true friends. Slowly the neighbors came around to realizing these were not criminals living next door. Soon the project rented groups of apartments where these citizens could live with minimal supervision.

Things were falling into place for many of the nation’s mentally disabled. And Irene was still safely tucked away at Devereux in California. I could finally relax and follow some other interests, including my girls, my writing, and my husband. Mom, Dad, and Bammy were still free of the nagging day-to-day worry of Irene’s care. I could finally concentrate on my family and my writing. We were all going to live happily ever after.

And God was doubled over, laughing, calling her friends to hear this one.