Removal of `mentally retarded' stigma changes perception, help offered to man

For Massachusetts adult, greatest challenge is living without label

February 21, 1999|By NEW YORK TIMES NEWS SERVICE

GLOUCESTER, Mass. -- No one taught Bruce McNeil to read in elementary school, and he stuttered so badly that a minute could go by before a word would form.

Still, McNeil says, his elementary school teachers in Salem would force him to stand before his taunting classmates and try to read to them.

They called him retarded. At first, the label stung. Then it merely hurt. As McNeil grew older, it seeped in and became part of him.

He used it to win assistance from the state, calling himself one of the nation's few mentally retarded entrepreneurs. But his laundry business failed.

Then, a year ago, McNeil got a letter that would twist everything he knew about himself into something he could not even imagine.

The state Department of Mental Retardation ruled, in a brief form letter dated Dec. 12, 1997, that McNeil, then 38, was not mentally retarded and therefore was ineligible for therapy and other help he sought.

"Suddenly I do not have the stigma of mental retardation," said McNeil, chain-smoking in his small kitchen on Eastern Avenue.

"It was OK for years to leave me in environments where no child or young adult should be, to talk down to me, scream at me, not teach me, pay me less. How much money has been used to suppress me from age 5 to age 38?"

But McNeil's most painful and confusing realization is that lawmakers, business people, banks, his clients and even strangers rallied to his side because of a disability he apparently does not have.

"It is as if he doesn't fit into a neat, politically correct box any more for people who want to help him and feel good about themselves," said Sandra Dahl Ronan, a Gloucester clinical social worker who worked with McNeil in 1990. "Now, he is just a guy who is failing, and that is not as romantic."

Labels have defined McNeil's life. Now he faces his greatest challenge -- trying to live without one.

Label meant separation

The 1960s were brutal for a boy in ill-fitting clothes, who drooled and cried a lot and spent years mostly segregated from other youngsters, in a basement classroom reserved for slow learners and mentally retarded children.

Not yet protected by the special-needs laws that took effect in 1974, McNeil was the child whom teachers and counselors had labeled as mentally retarded.

"This was not a life that God gave, but one that man created. Being segregated, constantly away from normal, healthy people, that is abuse," said McNeil, now 39. "No one ever asked me what was wrong. At school, they just said I was mentally retarded. I heard that all my life."

After years of being labeled retarded, McNeil came to believe it.

Never hiding the fact that his IQ measured from 70 to 80, a full 20 to 30 points below the level for normal intelligence, he started a housecleaning business on Cape Ann.

In the mid-1990s, he got the Massachusetts Rehabilitation Commission and some local banks to lend or give him tens of thousands of dollars to help launch McNeil's Laundry Service, a commercial business that opened with a splash in this fishing city in 1994.

Not only was the company run by a mentally retarded man with big dreams and a mouth to match, but it employed the so-called unemployables -- alcoholics, mentally ill people, long-term welfare recipients -- and paid them competitive wages.

Politicians and the news media found McNeil irresistible. Business Week, "Chronicle," ABC News, "Good Morning America," "The 700 Club," the Globe, Associated Press and the Wall Street Journal told his story in the 1990s.

The laundry failed, McNeil said, mostly because the consultants and mentors paid to help him simply did not, an accusation they have denied. McNeil, now unemployed, owes more than a half-million dollars in bank loans and other debt. He said he has never felt more alone, now that he is no longer anyone's cause.

"They would rather have the little boy who they think doesn't know any better and doesn't have the ability to think and see," he said.

State standards change

In 1992, the state Department of Mental Retardation adopted the federal standard for mental retardation, which states in part that retardation "refers to substantial limitations in present functioning characterized by significant sub-average intellectual functioning."

Before that, said Larry Tummino, assistant commissioner for DMR's field operations, the state relied more heavily on standardized tests, and anyone with an IQ of 70 points or less was considered mentally retarded.

Tummino said the department never classified McNeil as mentally retarded, although he acknowledged that teachers, social workers, psychologists and others did.

A DMR assessment of McNeil in 1997, his first ever by the department, determined that he was functioning normally by the department's current standards.

"In Bruce's records, you might see the words `mental retardation,' " Tummino said. "But today we would never just depend on the test. The new standard has actually opened the doors wider and made more people eligible," but not McNeil.

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