Learning in concert
At a new school for people with disabilities, music and life-skills classes work in harmony
By Joseph P. Kahn, Globe Staff, 12/3/2002
Making sense of basic math concepts is more troublesome for Lawson, though. And therein lies the challenge facing the 28-year-old Connecticut native and his classmates at Berkshire Hills Music Academy, a two-year post-secondary school that opened a year ago with the goal of teaching its graduates, ages 18 to 30, how to lead independent and productive lives despite their various disabilities. While the academy's 20 special-needs students share an affinity for music and a curriculum built around that proclivity, they are here to learn much more than scales and harmony.
In math class the next morning, instructor Tom Gajewski patiently shows Lawson how to calculate simple percentages - for example, a 5 percent tax on a $50 purchase - using colored rods. Lawson seems flummoxed. Fifty dollars is ''a very big number,'' he says slowly.
''I'm afraid,'' says Gajewski, ''that if you went into a store and Keith [Spring, a school staff member] weren't there, you wouldn't be an able consumer, Chris.'' Lawson nods, frowning.
For another student, Tori Ackley of Southborough, winning friends and influencing audiences is almost second nature. A talented singer and keyboard player, Ackley, 20, has performed at fund-raising events from Symphony Hall to Nantucket. She recently played at a Beverly Hills benefit concert and would like to become a professional singer. Either that, Ackley says, or she'd like to educate people about her disability with the message that ''everyone is special.''
People at Berkshire Hills ''make me feel good about myself,'' says Ackley. ''They treat me with respect for who I am, not for what I look like. They're the best friends I could ever ask for.''
In a class in social skills that day, however, Ackley focuses less on cultivating friends than on drawing personal boundaries. Instructor Matt Meers talks about when it's OK to hug someone, shake his hand, or ignore him altogether. Being able to make such judgments is crucial for young adults such as Ackley, whose disability, known as Williams syndrome, combines mild to moderate levels of mental retardation with extreme degrees of social gregariousness. (See accompanying box, below.)
To succeed in life, music aside, Ackley will need to know whom to embrace and whom to bypass, whom to trust and whom to keep her distance from. And that won't be easy.
''It's frustrating for us, because they're all natural performers,'' Meers acknowledges after class. Like others who teach at the school, Meers has a musical background - in his case, musical theater and music education - yet he uses that training here more as a means to an end, not an end in itself.
''The music comes out of them naturally,'' Meers observes. ''It's the social and residential skills where the real teaching comes.'' One student may be a gifted singer, he notes. But could she load an equipment van or endure a three-hour bus ride to a concert without complaint? ''Realistically, no,'' Meers says.
Dean of studies Greg Williams echoes Meers's comments about social awareness. ''They might misread what's appropriate to share with others, especially in job situations,'' Williams says. ''It's powerful to see them develop those skills so they can move their lives forward at all levels.''
A community experience
Berkshire Hills is a work in progress, those who run the school freely admit, an experiment in transitional living and learning for a population that would otherwise have difficulty fitting into mainstream society. And like many other such experiments, its lasting value may not be as immediately discernible as its surface strengths are.
Spend 24 hours at the school, for instance, and it's natural to marvel at the musical abilities of the students who have come here from across the United States and Canada. Music is their common language, their primary connection point. They burst into song in the hallways and seldom gather as a group without sharing a tune or two. Their days are filled with courses such as ''Introduction to Performance and Musical Theater'' as well as classes in English, public speaking, and computers. One course, ''Introduction to Music Aide,'' grooms them to perform in day-care centers and senior citizens' homes, which many of them do once a week. Field trips to local theaters provide a practical context for other types of vocational training, literally helping them learn the ropes in some cases.
During afternoons, the practice rooms in the academy's main building, a sprawling, 22-room mansion near the Mount Holyoke College campus, pulsate with the sounds of music. All sorts of music.
In one room on a recent Thursday is Sujeet Desai, 21, a second-year student from Syracuse, N.Y. Desai, who has Down syndrome, plays several instruments capably - today it's the clarinet - and has performed before audiences all over the world, including Malaysia and Singapore. An accomplished athlete and Special Olympian, he also maintains his own Web site (www.sujeet.web.com).
In another room is Brian Johnson, 25, a country-music fan from North Carolina. Johnson's songwriting talents were spotlighted in the 1996 documentary ''Williams Syndrome: A Highly Musical Species'' (featuring neurologist and author Dr. Oliver Sacks). Like most fellow students, Johnson cannot read a note of music, yet he has near-perfect pitch and can play virtually any tune by ear. ''How are you doing? '' he asks a visitor, with genuine concern, on each of half a dozen occasions that the two meet during the course of a day.
A jazz ensemble gathers after dinner that evening. Watching the rehearsal is the school's director of public affairs, Sharon Libera, whose son John, 21, plays clarinet with the group.
''John could sing before he could talk,'' recalls Libera. Her son has found it especially stimulating to be among friends who can improvise musically as well as get along socially, she adds. ''The school validates notions of their own capabilities,'' Libera says. ''And for each one that's different.''
Beyond a syndrome
All four students attending the rehearsal have Williams syndrome, a genetic disorder present in roughly 1 in 20,000 newborns. While not all academy students have the syndrome - four have either Down syndrome or an undiagnosed disability, according to Libera - many initially met as summer campers at Belvoir Terrace in Lenox, at a special one-week camp for young people with Williams syndrome. The camp, which began in 1994, proved such a powerful experience that several parents hoped to start a year-round learning program modeled upon it.
One parent was Berkshire Hills cofounder and board chairman Kay Bernon of Wellesley. Her son Charles, now 18, attended the camp in 1996. ''It was the first time he found something that truly belonged to him, that he could do in an average way, '' Bernon recalls.
Bernon and colleagues started scouring the Berkshires for a permanent site. In 2000, they purchased a 40-acre estate that once belonged to Joseph Skinner, a former Mount Holyoke College trustee. The inaugural class of 14 students enrolled last fall. All but one returned this year, when eight new students were admitted (one has since dropped out). Currently planned is the addition of a third ''graduate level'' year in 2003-04. The program is not inexpensive. Tuition and fees are $32,500 annually. Many students are subsidized, however, through their local public high schools, vocational-training programs, foundation grants, or state departments of mental retardation.
The students, equally divided across gender lines, live upstairs in the main building and spend most of the nine-month school year on campus. Among this year's group is Jeffrey Liebold, a New Jersey man who spent 10 years working in a grocery store before enrolling at Berkshire Hills.
''Across every disability there's musical ability,'' says Libera. ''And everyone with disabilities faces barriers to their full achievement. Students here ultimately want more out of their lives, as Jeffrey does.''
Meers, Libera, and others here suggest, though, that the crucial learning takes place outside the school's practice rooms and rehearsal spaces.
Physical fitness, for example, is an area often neglected among those with cognitive disabilities, they point out. So the school offers a yoga course, plus access to a fully equipped workout room. Daily health tips (on avoiding colds, treating dry skin, and the like) are offered at the 8 a.m. group meetings that begin each school day. Medications are dispensed under supervision to those who require them. Learning how to do laundry, cook breakfast, or walk to the local mall and buy a sandwich are skills every student must master. For some, it's far easier to memorize a Beethoven sonata.
Each student also takes a computer class, no matter what level of ability he or she demonstrates. In one session, students are required to sort through an Internet offer from a ''free CD'' record club. Volunteer instructor Amy Booxbaum, a Mount Holyoke senior, asks them such questions as, ''What does this sentence mean? `If you want it, do nothing. It will be shipped to you automatically.''' She pushes students to identify where the program's hidden costs are and what charges they might incur by joining such a club.
Rehearsal for life
Making students feel ''special'' is not the school's aim, staff members stress. Whereas most of the students have been praised for their musical talents before, staffers say, rarely have they been asked to blend in with a group. Nor have they faced critical judgments about their performances, the kind of criticism that every musician faces sooner or later and needs to deal with emotionally.
''It's like I have 20 stars and have to make a constellation,'' says Greg Williams after one class. ''They need to learn when to retreat into the background, because in employment settings they won't always be stars, either.''
Says Gajewski, ''Last year we felt we couldn't hold them to the standards we do now. We're asking them to be more critical of themselves and others this year. It's warm and cozy here, but we feel more urgency'' with students facing a transition to independent or semi-independent living.
Williams received his PhD in music education from the University of Connecticut, where he ran a pilot program for young adults with Williams syndrome. Part of the program was teaching concepts such as fractions through music. ''That 10-day experience absolutely changed how I taught,'' Williams reflects. ''It made me ask, `How do I really connect with this person? What is this person good at?' I rediscovered some of the joy I'd found making music when I was young.''
A call came late in 1999, asking Williams if he was interested in joining the effort to launch Berkshire Hills.
Parents were already ''noticing this common thread,'' he says, ''that music can be the vehicle for success'' in building self-esteem. The biggest surprise last year? How eager students were to share one another's emotional ups and downs, says Williams. Compromise and conflict resolution became critical to how the group functioned, he adds. Sexuality was another issue to be addessed, as intimate relationships have blossomed at the school and will continue to do so.
Meanwhile, the academy has developed a two-track curriculum. For those students with enough musical ambition and ability, honing their performing skills - even if they play only in an Alzheimer's ward or a day-care center - is the principal focus. For others, music may be a secondary concern.
''The program's power is not just the individuals it touches,'' says Williams. ''It's the individuals these students will go on to touch. They'll take these skills into their communities at a time when music is disappearing from our culture.''
What of the future? Will Berkshire Hills graduates fare better in the job market - in life - owing to what they've learned here?
''For a long time, our kids fell through the cracks because they learn so differently compared to the regular population. And even to the special-needs population,'' says Williams Syndrome Foundation executive director Terry Monkaba. ''But now we're educating the educators, and Berkshire Hills is a great example of what's possible.''
Tori Ackley's parents, Bob and Mandy Ackley, say their first goal for their daughter is happiness. ''The second is finding a fulfilling job, perhaps even one involving music,'' says Bob Ackley. Any measure of independent living beyond that would be ''a win-win for her and for society,'' he adds.
At home, says Tori's mother, ''She's more in charge of herself now. I may not always agree with her decisions, but she's got a lot more self-confidence than ever before.''
At a Friday afternoon meeting wrapping up another busy week, Tori Ackley reflects on how life has changed since she joined the school community. The students sit in a circle, each commenting on the highlights - or lowlights - of the week gone by. When it's Ackley's turn, she cannot suppress a broad smile. Having spent the previous weekend with her family in Southborough, says Ackley, ''I came through that door on Monday and said, `Boy, I'm glad to be home.'''
Everybody claps and cheers.
Joseph P. Kahn can be reached at jkahn@globe.com.
