By Carl Stocker, GLOBE STAFF
By Carl Stocker, GLOBE STAFF
Middletown, R.I.
Listening is the professional counselor’s greatest skill, and clinical social worker Brian Hubbard has to. He has only 40 percent hearing with amplification, which means that clients in his brightly lit, quiet office must speak into a microphone that relays impulses directly into his hearing aid.
Hubbard used to get by with lip reading, but in recent years, an unsuccessful cataract operation and progressive blindness have reduced his vision to a pinhole obscured by bright fog.
It’s hard to imagine what it’s like to live with such a combined disability, but Hubbard, who is 43, prefers the term "physically challenged" to "handicapped," and has responded to his own challenge with bravado. He dresses dapperly in a leather jacket and Stetson and is recorded as the only blind person to have "helicopter skied" mountain peaks in New Zealand (you fly up and ski down). Being the first, best or only is important to him. "People with disabilities are usually either underachievers or overachievers. I’m an overachiever."
Athletics provides a window of mastery and freedom of movement, though sometimes at a high cost. For the last seven years Hubbard has skied by following the shadowy form of a guide. In this way he has conquered the famous KT-22 run at Squaw Valley in California, on of the nation’s steepest, and won three gold medals at the National Blind and Visually Impaired Ski Championships. But a collision with a tree on the slopes in 1987 shattered one of his legs and with it his dreams of being part of a demonstration team at the Calgary Olympics. Despite chronic pain, Hubbard continues to ski recreationally, however, and took up competitive water skiing before he even got off crutches.
Hubbard’s goals now center on Counseling of Independent Living, a nonprofit organization that he opened here last September to provide counseling by the disabled for the disabled.
As always, Hubbard’s plans are ambitious. His board of directors includes both of Rhode Islands’ senators.
Now operating on a small-business loan, Hubbard is the office’s only therapist. He hopes to hire and train additional disabled counselors and to underwrite the cost of service to disabled clients, who are often unable to pay, by getting a federal grant for a demonstration project.
Hubbard also wants to link up with local hospitals to reach accident victims and to work with a local college to create a program leading to master’s degrees for severely disabled peer counselors he would train.
Though severely disabled licensed therapists are rare and Hubbard says his organization is unique, there is an established movement toward non-professional peer counseling for the physically disabled.
The Boston Self Help Center in Brookline and 11 Centers for Independent Living in Massachusetts provide basic raining for peer counselors. And the Massachusetts State Office of Handicap Affairs for four years has been running a successful Big Brother-style program called Partners for Disabled Youth, which teams up disabled mentors with kids wrestling with handicaps.
But there were no such programs when Hubbard was growing up in Lynn. Confronting developing disabilities as a teen-ager was a lonely and terrifying process for him. His father’s alcoholism was the central drama that siphoned off most of his family’s coping abilities, on of the factors that propelled Hubbard to conceal and deny his worsening eyesight as long as possible.
His vision in youth was still sharp when he looked straight ahead, and this, plus his self-taught lip reading ("my secret weapon") allowed Hubbard to make it through the public school system with above average grades and no special attention.
But it was Hubbard’s reckless talent as a star hockey player that made him one of the boys. The moment of reckoning came at 16, when Hubbard’s narrowing peripheral vision resulted in "some real good whacks in the head" that landed him in Massachusetts General Hospital. There his problems were diagnosed for the first time as progressive retinitis pigmentosa and related deafness.
Hubbard was ordered to hang up his skates. It was the first of what would be many losses, and it was devastating both symbolically and in fact. "The high school coach treated me like a king when I was playing well. When I couldn’t play he wouldn’t give me the time of day. I’d try to talk about it with my parents, my friends, but they didn’t know what to say to me."
As his sight and hearing worsened, Hubbard struggled through the University of Massachusetts at Amherst and two failed marriages, and received a Master of Arts degree in social work at Virginia Commonwealth University. He worked for several agencies before becoming a private therapist in 1982.
Hubbard doesn’t claim that disabled people are always the most effective counselors for their peers. "There can be a hierarchy among disabled people. One of my clients was put in a college dorm for disabled students and she was never more unhappy. Among her less disabled dorm mates there was a lot of what we call ‘compassionate on-up-man ship’- telling her what she should do. It’s a control play. I saw the same condescension and patronizing attitude among some of the members of the US Disabled Ski Team."
But Hubbard thinks he can be a positive role model for disabled clients and can "generate more of a trust level in the early stages" than an able-bodied counselor could. "I understand all the ramifications of disability because I’m living with it 24 hours a day, rather than listening to the problems of disability one hour a week."
Bernard Selby agrees. He lost his sight six years ago because of diabetes and is one of several disabled clients Hubbard is working with.
"My experience with sighted counselors was frustrating, even though they were well qualified," Selby said. "There were terrible, awkward silences. More than once I’ve been talking and sure they left he room or fallen asleep. Maybe because they’re not blind they don’t realize when you can’t see them you need to hear them. Brian is much more conversational. In fact, he sometimes says just what I’m thinking, because he’s been through it, too."
Selby believes he has some insights on Hubbard’s thinking as well. "You reach a point where you decide, ‘Am I going to give up?’ You can’t be normal ever again, so your choice is to be an underachiever and sit in a room, like I did for two years, or an overachiever. Because to do what other people do, you have to be so much better. You have to try harder, be more educated, have more experience."
"Brian throws himself into everything completely, and that turns some people off. They don’t realize that he has to do it that way or he won’t do it at all. To pull an organization together like this is so difficult that he has to oversell what he’s doing just to keep treading water, just to keep from drowning."
Hubbard’s fiancée, Judy Russo, an able-bodied real estate appraiser who also likes to snow and water ski, admires the fact that Hubbard has not given in to the forces that would isolate him. "He makes a tremendous effort to connect with people."
But she worries about the athletics sometimes. "When he water skis, we try to find an uncrowded spot because if another boat comes too close while he’s wake crossing, they’re going to assume he can see them."
Hubbard maintains that while he’s never been more disabled, he’s also never been happier. "I can tell people honestly what I can do and what I cannot do. The irony is that my ability to communicate openly emotionally is greater than 10 years ago, while my ability to communicate physically has been reduced." Russo says many of her able- bodied friends find Hubbard’s tenacious hold on life inspirational. "We went skiing last weekend with a friend and she said it was the first time in her life she’d skied that well. She looked at Brian and thought: ‘If he can ski that well, I can do better than I’ve been doing.’"
The couple share a waterfront apartment in Tiverton, R.I. with a magnificent harbor view that some people might find ironic. But Hubbard says he enjoys the vista on his own terms. "I like it best after dark when I can see the lights."