Every curb cut, every elevator, every accessible office building, every designated parking place, every independent living center exists for the same reason - someone with a disability saw a need close to home and decided to do something about it.

For decades, people with neuromuscular disorders have been leaders in expanding rights and opportunities for people with disabilities. For example, people served by MDA have been the first wheelchair-using students in their school districts, high schools and colleges. They've pushed for curb cuts, ramps, paratransit systems and automatic doors in public buildings. They've served on mayors' and governors' and presidents' advisory groups; testified before city councils, state legislatures and Congress; and used the media to raise public awareness.

A sprinkling of recent achievements by advocates with neuromuscular diseases includes: making a fishing pier, a river walk, bathrooms at a state fair, music festivals, college campuses, libraries, churches, voting places, post offices, stadiums and historical buildings in their communities accessible to wheelchair users.... monitoring handicapped parking spaces and notifying authorities of violations.... creating local resource lists and services.... offering sensitivity training to businesses and public agencies.... serving as mentors to children with disabilities.... establishing and running independent living centers.... fighting discrimination and breaking ground in public access, housing, employment, travel, personal assistance programs, assistive technology, health care and social services.

Virtually all this occurred when people corrected situations that affected them personally. Their efforts rippled out into an improved community for others.

Following are stories of five advocates who personify some of the key qualities that it takes to make effective change. Each of them saw a need in their neighborhood, city or state, and decided to take action:

PERSISTENCE

Last year, Kenneth Rotar, 31, almost single-handedly persuaded the Wisconsin Legislature to maintain its program of home health care services for people with disabilities. Now, he's got his sights set on the airline industry and a local music festival.

Being unable to see a concert at last year's Summer Fest in Milwaukee spurred Rotar, who lives in Madison, to bring accessibility to the attention of the 14-day festival's organizers. Some changes were made in this year's festival in late June (1996).

More important, Rotar is part of a formal task force planning large-scale changes for next year's festival. The group is addressing improvements for people with hearing, visual, movement and other disabilities.

Poor treatment as an airline passenger led to his determination to get wheelchair spots put on all new or refurbished planes, allowing passengers to fly occupying their own wheelchairs. He calls the temporary wheelchairs now provided to take people to their seats "glorified dollies" and "torture chairs" that make him feel he's being handled "like a piece of luggage."

Rotar begins each project by doing "a lot of research to find out exactly what some of the roadblocks might be, what some of the problems are, who the players are."

After consulting with the Federal Aviation Administration and the Aviation Protection Agency, he's working with the office of Sen. Russell Feingold (D-Wisc.) to draft legislation on the airline issue.

He also prepares to answer the major arguments against his position. To the airlines' concern about the cost of losing a first-class seat to a wheelchair, he suggests using removable seats that can be installed or removed in a matter of minutes, depending on need.

Similarly, when the Legislature proposed to cut Medicaid support for people with disabilities in 1995, Rotar uncovered a federal protection that would ultimately cost the state more than it hoped to save.

Too often, when people with disabilities see things they'd like to change, they assume someone else has tried and nothing can be done, said Rotar, who has spinal muscular atrophy. But with many projects, he has found, "I'm the first one to bring them up. Either way you've got to get over that excuse and go ahead and do it."

Formerly an accountant and now a writer, Rotar said, "The motivation for me is almost a morality type thing. I feel I have the ability and if I don't use it I'm throwing away a gift. Someone's got to do it, so I sort of rationalize that it's my job."

Among the rewards of his activities: "It gives you a sense of accomplishment and a chance to make the world a better place. We [people with disabilities] are often left with the feeling that we don't have a place in society, or maybe we're just taking and being taken care of. This is a chance to say, 'No, I am important. I am contributing.'"

Although he appreciates the need to make financial arguments for the causes he supports, Rotar is concerned about the long-term implications.

"Our country has got to be very careful about putting money first. What I'm afraid of is, if we keep using the bottom line and the dollar and not morality, that our society is heading down a slippery slope."

PATIENCE

Elaine Canady, 40, has lived almost all her life in Helena, Ark., a town of about 7,500 on the Mississippi River. As a child, she said, "I was a regular old shut-in. I didn't hardly go anywhere." She never expected to be independent.

Today, she works as a secretary and is helping make her town more open and accessible for those with disabilities.

Canady, who has spinal muscular atrophy, began a group called DREAMS for disabled Helena adults and parents of children with disabilities. The members share emotional support and information on technology, implementation of the ADA and communicating their concerns to the community.

Canady keeps informed through publications, organizations and workshops held across Arkansas, then conveys information about pressing issues to the group and to local business and community leaders. Nonetheless, progress in her small town, where many people seem unaware that the ADA exists, is slow.

"Any time you get a ramp put up somewhere or any time you get someone to notice that it needs to be done, then, to me, that's getting something done in this town," she said. "It's little bitty victories."

To merchants, she repeats the theme that making a business accessible brings in more customers, and she enforces her point through action. "There's a lot of stores that probably will never become accessible but they'll never get my money, either."

As a child in Helena, Canady went to public school until fifth grade, then was tutored at home by a volunteer teacher. At age 16, she went to MDA summer camp. "MDA camp was like an eye- opener. It let me know that I wasn't the only person with a disability. I started seeing that there was a whole world out there that I wasn't even trying to explore," she said.

Participation in a state rehab program began a new phase of her education. Her family learned for the first time about transfer aids such as sliding boards. After completing work for her GED, she went away to college, where she lived on her own and learned to manage personal assistants, be independent of her parents and study.

When Canady found out that college campuses were required to make classrooms accessible, she attended Phillips County Community College a few blocks from her home in Helena. While earning a two-year degree in data processing, she organized a Barriers Day at the college, in which administrators and board members were escorted through campus in wheelchairs.

Slowly, Helena is improving for a new generation of people with disabilities. Among other achievements, a lawyer's office, a major bank, a video store, a card shop and an optometrist's examination facilities are now accessible to wheelchair users, as are a couple of chain restaurants. "The bathroom is still inaccessible, but at least I can go eat pizza," Canady said.

Last year, when renovations were made in the sidewalks near the high school, Canady noticed there were no curb cuts at the school. "So I called the man in charge of it and I said, 'I think this is a violation; I think there's supposed to be a curb cut at those two corners.' He called me back and said, 'You're right!' Within a week, they were in there."

Another little bitty victory.

PERSPECTIVE

Donna Leary of Rochester, N.Y., was part of the first wave of disability rights activists nearly 30 years ago. Looking back, she sees progress but also regression.

Some students with disabilities at the University of Rochester formed the Organization for Accessible Buildings in the late 1960s.

"In our naiveté we thought that, if you made things accessible, that would take care of everything," Leary, 52, recalled. "We very quickly learned that what we were talking about was attitudinal more than physical or architectural."

Their first success was getting a ramp put in at city hall. They also insisted that at least 51 percent of the members of boards of community service agencies be people the agencies served. The group had an impact on building codes in their county, and in making New York one of the first states to require curb cuts in all new curbing.

Defeating plans for a special housing project for people with disabilities, which they regarded as "ghettoization," and starting one of the country's first independent living centers, were other early victories.

"We were true Camelot type folks," she said of those days of activism. "We'd go out with picket lines. We didn't care what we did, as long as we didn't burn the building down."

By the mid-1970s, Leary and her husband, Jim, also a wheelchair user and a cofounder of the organization, got more involved in independent actions. Leary, who has spinal muscular atrophy, has served on a state committee on vocational rehabilitation, the Governor's Transportation Committee, and the City-County Council of Disabled Persons, among other positions, while building a career in human resource management and program management and raising a son.

But the Learys have been unable to take progress for granted. In the past couple of years, they've been asked to leave a movie theater and a restaurant. Being well informed on local building codes and civil rights prepared them to handle both situations.

"At the movie theater, they said they were going to call the fire department and the police because we were an insurance risk," she said.

"We said, 'By all means, and we'll call the newspapers and show them how you're in violation [because the theater didn't have the required level area for wheelchairs]. Then we'll see who gets the negative publicity.' All of a sudden they went away."

At the restaurant, management told the couple that other customers were uncomfortable with their presence. Leary responded, "If people feel uncomfortable, that's really their problem. We'll be happy to sit down and talk to anybody, but we're not leaving."

"Now we make a habit of going in there at least once every couple of months. If I were young and energetic again, I'd love to take 20 wheelchairs in there," she added.

Leary is concerned about a regression in public attitudes toward people with disabilities since the country's conservative political turn in the 1980s. "There are pockets of progress and other areas where it's literally worse than it was before 1980."

EMPOWERMENT

As assistant director of an independent living center in Scranton, Pa., Keith Williams is a professional advocate. As a person with spinal muscular atrophy and a community leader, his work dovetails with his personal interests.

Through his job, Williams, 36, promotes compliance with all aspects of the ADA and other civil rights measures affecting people with disabilities. His activities include public speaking, writing newspaper articles, testifying at the Legislature and leading regional groups. Currently he's involved in developing a rural transportation system for people with disabilities, sometimes in areas where no public transportation system exists.

Williams finds it effective to emphasize the benefits of accessibility for society as a whole. "A business may look at the ADA as a law they have to comply to," he said. "But you can point out that universal access is good for everybody. Parents with young kids in strollers love the idea of curb cuts."

He makes presentations on attitudinal barriers, which include "everything from feeling sorry for the person to treating someone with a disability as a nonentity." At a recent talk to a Cub Scout pack, Williams encouraged the kids to talk about what they'd seen on TV about disability. Questions ranged from, "How do you sleep in that thing?" (his motorized wheelchair) to "Where do you sit at the movies?"

Part of his job is "getting other consumers involved ... I find that a lot of people have the interest and the ability, but they're not sure where to channel it." He guides them to "focus on a specific issue, then write a letter about it or call up a legislator. We give them a concrete task to accomplish."

In one regional group meeting, a woman who hadn't voted in several years said she'd discovered her polling place was not accessible, a direct violation of the ADA. Williams asked, "What are you going to do about it?" Now she's working toward making sure there's an accessible polling site for the November election.

Williams' motivation is "just knowing that each day there's something new, or each week there is some kind of a new barrier to be removed."

ENERGY

Annette Campbell, 43, of Abilene, Texas, is a part-time student at Hardin-Simmons University. But her real occupation is advocacy. In addition to volunteering at a hospital, she operates a service called Special Needs, helping people with disabilities and the elderly cope with the maze of local services available to them. No challenge is too large or too small - whether it's helping to start an independent living center or getting a local garden shop to donate peat moss and flower pots so homebound people can enjoy a touch of gardening.

Many of those she helps simply don't know how to deal with the procedures imposed by government agencies. When possible, she guides people to advocate for themselves.

"They may be so broken down that they've just given up. The lazy ones I don't bother with. But those that have been emotionally put down or physically broken, and they have no fight left, and we can give them a spark of hope, they'll turn around and help somebody else," she said.

Campbell shares her firsthand knowledge of what various programs offer and how to cut through bureaucratic roadblocks. "I've lived my life for the last 10 years trying to stay alive with this stuff. I do it strictly as a volunteer because I wish somebody would have done it for me."

Campbell, who has dermatomyositis and several other medical conditions, had one of her legs amputated in 1993 because of severe infections. Though she can only take one or two courses a semester, she aims to earn a degree in social work so she can continue her advocacy with a title and a paycheck.

Her own battles with agencies providing her disability payments, school tuition and medical expenses continue -trying to get the right wheelchair, fighting a cutoff of payment for medications. She faces constant obstacles, but has the energy to keep going.

Campbell is concerned that people with disabilities may lose benefits in health care, rehabilitative programs and civil rights in the current wave of welfare reform. She's also turned her energy toward increasing accessibility at her church-supported university and getting better accountability from home health care agencies.

WHAT IT TAKES TO MOVE AND SHAKE

Know the Law and Your Rights ...

Keith Williams: Brush up on the law. There's no way that people with disabilities can expect the private, or even the government, sector to comply with the Americans with Disabilities Act and other civil rights legislation if we don't know the law ourselves.

But Don't Expect Miracles ...

Elaine Canady: The ADA is an unfunded mandate. It's up to individuals to get it enforced. Some people are going to have to be sued to be aware.

Ken Rotar: It's amazing, when you drop the word "lawyer," how people react.

Donna Leary: You should not be living off the welfare system and Social Security. You need to be doing everything you can to be part of the work ethic, part of America.

Stick to Your Ideals ...

Annette Campbell: When I talk to the university about accessibility, they say, "If we do it for you, we have to do it for everybody." I say, "That's right."

Rotar: When you get people arguing about whether they even have a problem to begin with, you're sort of wasting time. I say, "Let's stop talking about if there's a problem. Let's just talk about how we're going to fix it."

But Show How Everyone Benefits ...

Williams: It's great to say, this is the law, but it's also good to point out, for example, that there are tax breaks for businesses that make themselves accessible.

Rotar: With every legislator I talked to, I tried to get the scoop on what their big pet projects were. Everyone has a button to push and you've got to figure out what that is and make it look like the work that you're doing is not to benefit you but is to benefit them.

Use the Right Tactics ...

Rotar: If you're going to have a rally, it's got to be something that's very dramatic. There is a role for that. But I think people would be much better off if they said, "Let's meet with the decision makers and try talking with them in a civil manner."

Leary: I firmly believe in using the media. With pickets and demonstrations, it's a matter of timing. Have you tried everything else? It has to be part of an overall strategy.

But Keep on Until You Get Results ...

Canady: They (the city council) are the people who pat you on the head and say, "Thank you so much for letting us know about this problem." Then they don't do anything.

Campbell: I've got people across the state that I'll call and say, "You know I'm not going to let up if y'all do this." I win in the end; they just fight me all the way.

Help Others Help Themselves ...

Williams: I would much rather work with a person who has the interest but might not be quite sure how to apply it, than have a person who is articulate and knows how to write a letter well but just won't do anything. I'd rather have that interest and try to provide them with the tools they need. People like that are sometimes the best kinds of advocates.