SOMERVILLE - It is a raw, bone-chilling day on the rugged streets of this rugged city, yet Keith P. Jones is out and about in his motorized wheelchair, steadily making his way to his favorite diner. Fittingly enough, Jones is headed into the wind.
It's been that way his whole life, one way or another.
When you're born with cerebral palsy, you have to battle constantly against the low expectations of others. When you're black and in a wheelchair, you have to combat the assumption that you are a victim of gang violence. When you're whip-smart in ways that the world may not see, you have to make the world see it.
Easier said than done, as Jones, 38, is the first to admit. "When I was a kid, there were no real role models for youths with disabilities, especially African-American youths with disabilities, no sense that you could grow up to be Barack Obama," he says. "Even now, there still isn't."
He is out to change that. Jones has emerged as a forceful disability rights activist, arguing to legislators, educators, business owners, and anyone who will listen that the cause of people with disabilities is the next frontier of civil rights. "It is the last great struggle," he says.
After years of pushing for changes in educational policy, workplace rules, and public attitudes toward the disabled, Jones is considering a long-shot campaign for the US Senate as a way to bring more attention to the issue. "We are perpetually creating an underclass," he insists. "We are perpetually under-educating a group of people. We're not seen as a workforce commodity. We're seen as a burden."
For all his intensity and sense of mission, Jones laughs easily and often, and a favorite target is himself. A composer, producer, and performer of hip-hop, he has released two CDs of his own music. "They went wood," he says wryly. "Not gold, not platinum. Wood." He and his wife, Kerlyne Pacombe Jones, are expecting a child in two months. Kerlyne is blind. "I'm her eyes, she's my hands," he explains.
To some, Jones has become the kind of role model for disabled youngsters that he lacked during his youth. As a consultant who specializes in disability issues within minority communities, he seizes every chance to use his life story to inspire disabled youngsters and to reassure their parents, opening their eyes to what is possible. "He's undaunted. He just surges out," says Richard Robison, executive director of the Federation for Children with Special Needs, which selected Jones to be a keynote speaker at its Saturday conference in Boston. "He seems to have a confidence about him that is something to be admired by anyone. The rest of us wish we had a couple of days like that."
"For a lot of parents, there's always a fear about how society is going to accept their child," Robison adds. "Keith just puts all that to sleep in a minute."
If Jones delivers a message of uplift, however, it is one without a sugar coating. He went through too much himself for that, and had too many confrontations with, as he puts it, "people insulting my abilities, or trying to put me in a box."
The only child of a single mother, he spent his early years in St. Louis. "My mother did a hell of a job," says Jones, shaking his head. "I told her yesterday, 'I could never repay you, even if I had Bill Gates's money.' "
His father, he says, was a different story. "His guilt clock went off every six years," recalls Jones. "It was, 'Oh, he's 12, I'll call him. Oh, he's 18, I'll call him.' " On one of those calls, he says, his father put two other people on the line: the daughters he had had with another woman. Jones can't help but wonder if his disability is part of the reason for his father's apparent indifference toward him. "If I sound like a bitter man, it's because I am," he admits.
But his mother was always there, steady as a rock. In St. Louis he became one of the first disabled students to be "mainstreamed," thanks to her persistence. Throughout his childhood, her constant goal was for him to learn the hard lessons of independence. "My mother was like, 'He will not be in a sheltered workshop. He will not be putting buttons on boxes,' " says Jones.
Yet even his mother couldn't protect him from his classmates, especially when they moved to Ithaca, N.Y., when he was 7 years old. As someone with a neurological disorder that impairs muscular coordination and body movement, and as one of the few students of color, he was a target. "Kids are cruel," Jones says matter-of-factly. "It was: 'Why do you look like that? Why do you talk like that? Why do you drool? What happened to you?' Everything you could imagine was hurled at me." That included, he says, racial epithets. Well-meaning adults also delivered the occasional wound, by referring to him as the "cute little crippled boy."
At 12, when he and his mother moved to Boston, Jones began to come into his own. He excelled at math and science. He developed a wide circle of friends. When he said he wanted to learn Chinese, his mother found him a class in the language at the Massachusetts Institute of Technology. She enrolled him in an art class at the Museum of Fine Arts, and even landed him a bit part one year in a production of "Nutcracker Suite."
Yet even as he was trying to expand his world, some were trying to shrink it, as assumptions about race collided with assumptions about disability. With gang violence rising on the streets of Boston, strangers would look at the black youth in a wheelchair and ask him: "When did you get shot?" (a question he sometimes gets to this day). As he neared graduation from West Roxbury High School, harboring the ambition to become an aeronautical engineer, he achieved high grades despite a daunting workload that included calculus, trigonometry, geometry, and several other courses. One day, though, a teacher pulled him aside and told him that, because he was a poor speller, Jones should be held back for another year of high school.
Neither he nor his mother was having any of that. Off he went in 1988 to Ramapo College in New Jersey, which was known for its accessibility to the handicapped. There, he grew politicized and wrote op-ed pieces for the campus newspaper (arguing, for example, that the first Gulf War was primarily about oil). Still, it was not until 1997, when he began working at the Boston Center for Independent Living, that he became fully aware there was a disability rights movement. He plunged into it, immediately recognizing it as a potential antidote to the sense of isolation many disabled people feel.
Jones became a consultant who trains front-line staff at schools and nonprofit organizations on issues confronting the disabled, especially in what he calls "the historically underserved and unserved populations": African-Americans, Latinos, Asian-Americans, recent immigrants, and the elderly. His company, SoulTouchin' Experiences, also encompasses his music production and public speaking. "I turned everything I like to do into a company," he says. "Just stuffed it under an umbrella."
Also under that "umbrella" is persistent advocacy for the policy changes he sees as necessary. For instance, Jones argues for fuller funding of Chapter 766, the special-education law, and for regular disability-awareness sessions for teachers and school administrators so they will better understand the issues that confront disabled students. "We need to understand that all kids - whether they're on a ventilator, in a wheelchair, or have dyslexia - all have the ability to learn," he says. Employers, too, need to jettison preconceptions about what a disabled person can do, he adds, a task made more urgent by the fact that many veterans of the Iraq war are returning home with disabilities.
Jones is both visible and voluble, but he knows that is far from true of all disabled people. "For every person like Keith Jones, there are 20 you don't see," he says. Perhaps that's why he refuses to slow down, and why is he is pondering a Senate run, though he admits he is "under no illusions" about his chances if he does decide to run. He is nursing ambitions to be an actor. He has just finished a new CD. He is in demand as a public speaker in schools and community organizations. One way or another, Jones is using his voice to amplify a message he thinks the wider culture needs to hear.
"It's sort of a statement that regardless of disability, I can do this," he says. "Regardless of our disabilities, we can do this."
Don Aucoin can be reached at aucoin@globe.com.
