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By Roxanne Furlong

In January, one of the early leaders of the disability movement, Elmer C. Bartels, celebrated 30 years as Commissioner of the Massachusetts Rehabilitation Commission. After Ed Roberts, Bartels is the country’s second appointed state director with a disability. He co-founded both the Massachusetts Association for Paraplegics -- a pioneering advocacy group that spearheaded the creation of the first architectural access boards (1968) -- and the country’s second ILC. Today he oversees an annual budget of $150 million, a staff of 1,000, has grown the number of ILCs in his state to 11 and lists numerous awards and honorary degrees -- impressive accomplishments for anyone, but especially for someone who became a quad in the days before power wheelchairs and high survival rates.

Bartels was born in Newton, Mass., a suburb of Boston. From the age of 12 he spent his summer days at Agawam Boys Camp in Maine, eventually becoming a camp counselor and attending until he was 22. He graduated from high school in 1956, and was, he says, not a terribly good student. One year of post-prep school at Hebron Academy readied him for Colby College in Maine. There he made the Dean’s list most of his four years and played interfraternity hockey.

In his senior year, 1960, on December 5, Bartels, chasing the puck around the back of the opposition’s goal, tripped and flew head first into the boards, breaking his neck at the C4-5 level. He spent a year hospitalized and in rehab, where he made lifelong friends with other paras and quads who would become advocates with him. And it was here where Bartels fell in love with Mary, his nurse.

A Beautiful Mind

Bartels grew up with three sisters. His mother belonged to various hospital and community organizations. His father, a noted endocrinologist who cared for John F. Kennedy, was told to bring his son home from rehab and keep him comfortable. “He was a medical man but he was at a loss,” Bartels says. “He couldn’t fix me. Back in the old days, there wasn’t much around, if you did live,” Bartels says, matter-of-factly. “Motorized wheelchairs did not exist then. Accessible curb cuts did not exist then. Accessible anything did not exist then. We did as best we could given there was no assistive technology.”

But Bartels’ father could help him financially, as needed, in the days before SSI. In January 1962 Bartels married Mary and finished college, graduating with a B.S. in science and math. He and Mary had a daughter, Joanne (son Jim was born 10 years later), and by the fall of the same year, Bartels was off to Tufts University in Medford, Mass. Two years later, he received a M.S. in nuclear physics and his first motorized wheelchair.

“It was an Everest & Jennings with drive belts, motors that were hardwired to the chair and if you wanted to change a motor you just unbolted and put on a new one,” he says. “Now everything is very modular.”

Master’s in hand, Bartels landed his first job at MIT as a computer programmer and a nuclear physicist. “I grew up with a computer,” Bartels says. “In fact, the keyboard and the automatic typewriter were my first assistive devices, they allowed me to work.”

The elder Elmer Bartels bought his son a VW bus, and in the days before lifts, installed plywood ramps so Mary could drive Bartels to and from work with little Joanne along for the ride. Bartels has been employed since his first day at MIT, working there until 1968, moving on to Honeywell, where he managed 35 employees, and then to MRC in 1977. For years, Mary was Bartels’ care assistant, helping him dress in the morning and, as he says, “pointing me to the door for work.”

Early Advocacy

It wasn’t just his experience that led Bartels to the role of advocate, but also, he says, his need to survive. Bartels ticks off the names of disability movement giants when he reminisces about the early days -- Ed Roberts, Fred Fay, Lex Frieden, Judy Heumann. Also less well-known pioneers like Jim Jeffers, Bill Tainter, Lonnie Dovill, Norman Kirk, Bob Harris, Bob Stetson, Tom O’Brien, Charlie Carr and Bartels’ buddy and roommate from rehab, David Hayes, known as Chairman Mao for his revolutionary leadership.

Bartels and Hayes started MAP, and one of the first things they did was submit the architectural access bill in 1968. Along with MAP, other small groups were organizing in Berkeley and New York and testifying in front of Congress, and as Bartels puts it: “flashing the metal on the state house.”

“You take three or four wheelchairs with people in them and put them in a hearing and these legislators wouldn’t know what to do,” he says. “Especially if you testified articulately on a given topic. They [legislators] were amazed that people with disabilities had intellect, so we’d get over that hurdle fairly quickly.”

It just happened that the legislator who presented the architectural bill was Bartels’ representative from his neighborhood. “We had a picnic in my house we called a ‘Wheel-In,’” he adds. “We invited the local press and TV cameras, and one of the local newspapers. We were learning how to get a bill passed and how to build a constituency -- how to get legislators to vote for our bill.”

But first, the constituency had to get into the state house via the freight elevator by way of the trash entrance.

“It was the only way into the state house. That was our first introduction,” he says. “The second was to make sure the hearing we were going to was in an accessible part of the state house. We’d make a big deal if they put it in an inaccessible hearing room and make the guys who scheduled it there lift us up the stairs to go to the hearing. They wouldn’t do it again.”

MAP’s perseverance paid off. The politicians got to know the group and their issues and began to see that access was important. During this time, groups from around the country would converge at the National Paraplegic Foundation [now National Spinal Cord Injury Association] convention. “We’d learn from each other,” Bartels says. “We were all growing around the same time at various rates. I think we in Massachusetts were right up there on the cutting edge.”

While MAP was getting legislation passed in Massachusetts, Fred Fay was working in D.C., having founded Opening Doors and working on the Washington assembly to get access laws passed. “Initially we worked independently,” Fay remembers. “Then in the late 60s we both formed chapters of the National SCI Association. In the mid-70s, I moved to Massachusetts and worked with Elmer on a number of issues and was on Governor Michael Dukakis’ committee to choose the new Commissioner of the Administration of Vocational Rehabilitation.”

Fay says they interviewed several people from all over the country but Bartels stood out. “He had several years of programming experience and secondary line management at Honeywell,” Fay says. “With MAP he was on the cutting edge of a whole range of issues, including making the paratransit subway more accessible, getting accessible education for kids with disabilities -- he was quite a leader, and that’s what impressed those of us on the committee.”

“I was looking for the best people I could get to run my agencies,” says former governor and presidential candidate, Dukakis. “When I interviewed him, it was obvious that he was a very special guy, and because of his own disability, understood the plight of others. I believed he would be a fine commissioner and I think time has proved that I was absolutely right.”

The Scientific Approach

Both Democratic and Republican Governors have reappointed Bartels, term after term. “It doesn’t happen that people last this long in state government,” says Janna Zwerner, Bartels’ chief of staff of ten years. “Commissioners of State Voc Rehab agencies are political appointees. Sometimes you get a governor who wants to give an old friend a position. That person may not have a disability and they may not know a thing about disability.”

Zwerner says some government-naïve appointees can take two years to figure out the position, then they’re gone in another two years. She says that Bartels is currently the longest-serving state director in the country, and that it’s not just longevity that has made him effective in his position.

“Here’s where the scientist comes in,” Zwerner notes. “He wants evidence on everything, he wants to study outcome. Because he has a scientific approach, he can prove to you how productive we are and where our money goes,” Zwerner says. “He’s always had that sort of empirical impetus. And the bottom line is, our state has the best outcomes, by far.” Plus, she says, because he has a disability, he cares about voc rehab in a way that you don’t find very often in politics.

Michael Muehe worked with Bartels several years ago when he interned with MRC in the Client Assistant Program to, as Zwerner puts it, be a thorn in Bartels’ side.

“My job was to advocate on behalf of individuals having difficulty getting through the VR bureaucracy,” says Muehe, now Executive Director/ADA for the Cambridge Commission for Persons with Disabilities. “Elmer always took a hands-off approach, letting the fair hearing process take its course.”

Muehe explains that at any fair hearing, someone in Bartels’ position would have the option of reviewing the result of the hearing and overruling it as commissioner. Muehe says there were a number of controversial cases where Bartels could have overruled, but didn’t.

“He actually hired people with disabilities to be fair hearing officers,” Muehe continues. “He was really interested in consumer empowerment. He still is. And he’s still figuring out new and innovative ways to give people with disabilities the opportunity to work and live independently.

Muehe and Zwerner list Bartels’ accomplishments: Massachusetts is one of the first states to have a waiver for personal care assistant services and a PCA program for disabled people who are working; a statewide program offering VR services to persons with severe head injuries, which includes a trust fund supported by a speeding ticket surcharge of $50 ($250 for a DUI); a benefits counseling services program; an adaptive housing loan program; and an assistive technology loan program, to name a few.

“Elmer had a huge influence on me,” Muehe says. “Here’s a guy like me, someone with quadriplegia, and he was always at his desk before I got in there and he was always there when I left for the day. He’s got a great work ethic.”

His Passion, His Work

When you talk to Bartels, it takes him about two seconds to get on his favorite subject -- helping people with disabilities become part of the work force. “With the right support system, I think anybody can work,” Bartels says. “Test that theory against Ed Roberts. Here’s a guy who was tank-dependent at night, in an iron lung and a complete quad from polio. He had a 24-hour PCA support system and he became California’s State Director of Vocational Rehab in 1976.”

In 2006, under Bartels’ leadership, 3,602 people with disabilities headed off to work in new jobs. Now, when MRC surveys people with disabilities, their biggest issues are housing, transportation, and recreation. Employment is way down the list. “I take that to mean that in Massachusetts we’re doing a pretty good job of meeting people’s employment needs,” says Bartels.

At press time, Bartels was waiting to hear if the new governor, Deval Patrick, would reappoint him. “I’m 68 years old. I’m still having fun and as long as I’m healthy, I’m going to stay at this stuff,” Bartels says. “I’m going to keep showing up for work until they send me home.”

At the rate he’s going, that may not be anytime soon. A quad 46 years post-injury, he’s a model of longevity. “When I think of all the people I used to pass the donuts to during my dad’s Wheel-Ins,” says his daughter, Joanne, “the majority of them are gone. I think the reason why my father isn’t gone is because of my mom. As a nurse she’s just always paid very close attention to him.”

In December Joanne was busy finalizing the details for a surprise celebration on January 12. If all goes as planned, by the time this is published, Bartels will have wheeled into the Grand Ballroom of the Boston Marriott Newton Hotel expecting an Easter Seals benefit dinner. Instead, 500 guests -- family, friends and colleagues -- will have gathered to celebrate his 30 years at the helm of MRC, and to surprise Bartels with the announcement of an Easter Seals summer camp scholarship fund for children with disabilities in honor of his 56 years of summer camp involvement.

Congratulations will have abounded, even videotaped praise from Senator Ted Kennedy, Michael Dukakis, Tom O’Brien and Fred Fay. And amidst the luminaries and hoopla, Joanne, clipping a wireless microphone to her dad’s shirt, will have whispered in his ear, “Number one, you can only have one Old Fashioned. And number two, don’t forget to thank Mom.”

Reprinted from the wheelchair lifestyle magazine New Mobility