I read this article in the Philadelphia Inquirer on Sunday. I sent Stacy a
reply and you may read it below the story. The Philadelphia Inquirer will
publish my reply this week. Please let us know your opinion of the article
and my reply

Stephen Allman
______________________________________________________________________

'Mentally retarded' stirs war of words
Some advocate change. Others say the words have a precise meaning and stigma
would attach to any description.
By Stacey Burling
Inquirer Staff Wt=10,top=50')
GERALD S. WILLIAMS / Inquirer

Nicholas Mosakowski performs during a Variety Club talent show. The
15-year-old, from Pottsgrove, suffered a brain injury as an infant.


To thousands of people, mentally and retarded are fighting words.

For years, people who are mentally retarded, their families, and
professionals who work with them have been wrangling over what to call people
with IQs below 70.

Advocates for change argue that the word retarded - or more often retard - is
now a school-yard taunt, a word too hurtful to be applied to people who want
and deserve respect.

"That's my pet peeve in life," said Roseann Mosakowski, a Pottsgrove woman
whose 15-year-old son suffered a brain injury as an infant and now falls into
the category. "I hate those words. I hate them with a passion."

On the other side are people who contend that mentally retarded has a more
precise meaning than the alternatives and is used in laws and funding
regulations. Why add confusion, they ask, when many people still don't know
the difference between mental retardation and mental illness? Plus, they say,
any new word will soon become stigmatized, too. All this energy would be
better spent trying to improve the image of people with mental retardation.

The debate has become especially intense recently. The Arc of the United
States - once the Association for Retarded Children and then the Association
for Retarded Citizens - recently removed the words mentally retarded from its
mission statement. This year, Arc-Allegheny, parent corporation of The Arc of
Greater Pittsburgh, got the more "positive" name Achieva and has purged all
reference to mental retardation from written materials. It uses "cognitive
disabilities" instead.

The 7,500 members of the influential American Association on Mental
Retardation, which represents professionals, will vote next month on whether
to change the organization's name to the American Association on Intellectual
Disabilities. The group, which writes the official definition of mental
retardation, has decided to retain that term for professional use because it
is used in so many government regulations and laws.

Steve Warren, a developmental psychologist at the University of Kansas and
former president of AAMR, supports the name change and thinks it will be
adopted, if only because people are tired of arguing.

"I think many members of the organization would just like to get past this,"
he said.

But Richard Garnett, a Fort Worth, Texas, psychologist and parent of a
mentally retarded child, thinks the new name is likely to become problematic.

"The problem is,... in 10 years, we're going to be doing this all over
again," he said.

Steven Eidelman, Arc's executive director, said his organization just spent
three years examining and reorganizing itself. What to do with mental
retardation, he said, "was the two-ton elephant in the middle of the room."
The group now tries to avoid the term, using "our constituents" and "people"
whenever possible.

Eidelman thinks the war of words is "irreconcilable." He has a bet with an
AAMR leader that the debate will be "resolved five years after hell freezes
over."

Terms such as cognitive impairment or disability, developmental disability,
mentally challenged, mental disability, even intellectual developmental
disability, all have their supporters. AAMR chose "intellectual disabilities"
because the phrasing is gaining popularity outside the United States, but its
precise meaning is "still up for grabs," said Doreen Croser, executive
director.

To the uninitiated, this was already a linguistic minefield. Mentally
retarded activists are called "self-advocates." To minimize offense, one says
that someone has a disability, not that they are disabled. The help they get
from the government is called supports, not services.

And this field's history is littered with discarded words. There was a time
when the words idiot, moron and imbecile - all terms of derision now - were
used by professionals to classify people whose brains functioned poorly.

AAMR has already had three names. It was founded in 1876 as the American
Association of Medical Officers of Institutions for Idiotic and Feebleminded
Persons. In 1933, it became the American Association on Mental Deficiency and
took its current name in 1987.

Many in the debate point out that stigma quickly attaches to new words.
Special-education students soon became "speds." A friend told Eidelman about
a boating trip he took with two teenage boys. When one fell in the water, the
other joked: "You're so developmental."

"In my view, in the broad scheme of life, what you call it isn't going to
make a bit of difference," said Arlene Jarett, a longtime Montgomery County
advocate whose 34-year-old son has Down syndrome. "It's how society views the
people and what they do to support them."

The push for a name change has come largely from self-advocates and younger
parents. Many younger parents prefer to identify their children by the
genetic syndrome that caused the mental retardation - such as Down or Fragile
X syndrome - or by other conditions that often are associated with
retardation, such as autism or cerebral palsy. In about 40 percent of cases,
there's no identifiable cause for the child's problems.

Ideally, self-advocates would like no label. They want to be known by their
names. They say, "Just see me as a person. See my strengths. See my gifts,"
said Audrey Coccia, mother of an adult daughter with mental retardation and
executive director of Visions for Equality, which monitors services for
retarded people.

Steve Dorsey, who has cerebral palsy and is active with Speaking for
Ourselves, an organization for people with mental and physical disabilities,
said his group preferred the term "mental disability."

Garnett, who is active in both Arc and AAMR, says that, among professionals,
mental retardation has a clear meaning. A term like "intellectual
disabilities," he said, is much fuzzier.

"I half-jokingly say, if the [AAMR] changes to the American Association on
Intellectual Disability, we might as well call ourselves the American
Association on People with Problems," Garnett said.

Robert Beard, a linguist and professor emeritus from Bucknell University,
said that changing terminology was unlikely to have much effect.

"The problem is that the societal prejudice is not against the word. It's
against the concept," he said. "The words that we use reflect our prejudice.
They don't determine them. Changing the word is not going to change our
minds."

Warren thinks the argument stems from the impulse to treat people as fairly
as possible and not lock them into roles.

"I'd like to think it's a peculiarly American game," he said, "because we try
idealistically to create the fairest playing field we can, and we try to
honor people's wishes of how they want to be defined."
______________________________________________________
Stacy:

I read your article about the "Mentally Retarded" stirs war of words. It was

a wonderful article and I understand how some advocates hate the use of
mentally retarded. Many people put the mentally retarded and the mentally
ill
into the same category and this is wrong. Some of the mentally ill can be
controlled by medication. The mentally retarded was born with brain damage
or had an accident that caused brain damage and depending on the severity
ofthe
brain damage they do not know right from wrong. It does not matter if your
mentally retarded or mentally everyone should be treated with respect.

I'm a 42 year old man that has Cerebral Palsy. I try to educate people about
people with disabilities by explaining how I became disabled and my
experiences. I am treated different because I walk a little funny and talk
with a speech defect but most people understand me. There are many people
that treat me like a child or someone that is mentally ill or mentally
retarded. This is wrong but I understand I must educate people that I have
goals, dreams, desires like most people do. I know some people have closed
minds and will always put me into some category. We must not ignore people
that have close minds because they could spread their prejudice to others.

Words are very important and many words do create a stigma. I do not know
what words can be used to describe the mentally retarded or someone like
myself that is physically disabled but words or labels do not matter to me.
All of us are individuals and it does not matter if you are physically
disabled, mentally retarded or mentally ill we need to be treated with
respect. Respect to me means to be treated the way you want to be treated
and to treat other people the way you want to be treated.

We need to educate society about treating people as individuals no matter
what limitations all of us have. People that have physical or mental
disabilities want to work and do what most people do. Many of us may have
more limitations but we do not want pity or sympathy. I work part-time as a
File Clerk and I realize I am fortunate to have a job. I want to earn my
money and hopefully one day make people aware that the disabled like myself
has dreams and desires like anyone else.

Stephen Allman