From GateHouse News Service:BRIDGEWATER, Mass. — The parents of a Bridgewater student with Down Syndrome say the “R” word is an offensive schoolyard taunt not a technical term that belongs in their son’s schoolbook.
In February, Tom and Pauline Lewis got a friendly head’s up from their son Ian’s seventh grade science teacher about a passage on Down Syndrome in his textbook. The teacher asked if they would like Ian (pictured) removed from the classroom for that lesson.But when the Lewis’ read the passage, they realized the issue was bigger than Ian.
The textbook wouldn’t just shape Ian’s view of himself. It could shape how his classmates see him and others with Down Syndrome.
And not in a neutral way, they said, but with language they consider pejorative, hurtful and outdated.
The textbook, the 2002 edition of “Science Explorer: Cells and Heredity” published by Prentice-Hall, uses the term “mental retardation” and characterizes Down Syndrome as a genetic “error.”
“My feeling is someone could look at Ian and say, ‘You’re a mistake. You’re an error,’” Pauline Lewis said.
But Ian’s not a mistake. He’s not an error. He’s her wonderful, remarkable, irreplaceable son, she said.
Tom Lewis said he’s concerned the book might make it more likely other students will bully Ian and other children with Down Syndrome.
He pointed to the incident in April in which three Bridgewater Middle School eighth graders were suspended for bullying Williams Intermediate School student Brian Palmieri, who has Down Syndrome, for months on the school bus.
Those students used the word “retarded,” Tom Lewis said. They probably heard it elsewhere, but it didn’t help to have it reinforced as acceptable language in school, he said.
“I believe there’s a strand that connects everything. I don’t know if there was a link, but they had this book in seventh grade,” Tom Lewis said.
From the Lewises’ perspective, the solution was clear.
“We just basically said, ‘This is a no-brainer. We want the book removed,’” said Tom Lewis, a special education teacher in Boston.
But that decision turned out to be anything but a no-brainer as far as school officials were concerned.
The Lewises spoke with Bridgewater Middle School Principal Derek Swenson and asked the book be removed temporarily while they discussed how to handle the situation.
Tom Lewis said Swenson told them doing so would be a burden on the teacher and the system, since it is used district-wide, in Bridgewater and Raynham, and it would be a financial burden to replace so many textbooks. Tom Lewis replied there’s no way to put a price on his son’s safety and well-being, he said.
Swenson could not be reached for comment. The Lewises said although they disagree with him on this issue, he generally has a good relationship with Ian and has been supportive.
Superintendent of Schools Jacqueline Forbes wrote the Lewises on March 16 in response to a letter from them dated March 9. She said she would appoint a Textbook Evaluation Committee, in accordance with district policy, to conduct a hearing on the complaint.
In the meantime, the book would continue to be used, but the passage on Down Syndrome would not be taught in Bridgewater or Raynham, she wrote.
“The science textbook in question is the basic teaching tool that the seventh grade teachers use to provide instruction,” Forbes wrote.
As to the Lewises’ concern about potential bullying, she wrote: “Over the course of the last month, Bridgewater Middle School has provided anti-bullying programs to students and faculty as part of the health curriculum that includes character education, conflict resolution, bullying and cyber-bullying.”
Forbes could not be reached for comment.
Tom Lewis said Derek Swenson told him he did not think the textbook would lead students to bully Ian or other students with Down Syndrome.
“I know my kids,” Swenson told him, Tom Lewis said.
It struck Lewis later, “While this was all going on, Brian was being bullied.”
The Lewises were given 15 minutes to state their case with no discussion at the hearing, they said. The committee was made up of three central administrators, two principals, four science teachers and one parent.
Three weeks later the Lewises received a letter from Forbes dated April 5 informing them the committee unanimously concluded the textbook should remain part of the seventh grade science curriculum.
“The committee did, however, suggest that teachers meet to develop lessons that will promote awareness of and sensitivity to people with disabilities and to recognize the dehumanizing effects of language that labels individuals,” Forbes wrote.
She attached a copy of the committee’s decision, which reads, in part: “The terminology used, ‘mental retardation,’ is currently undergoing transition and widespread agreement on the replacement terminology is, itself, being debated. The committee suggests that the teachers should meet as a whole and create lessons for ‘teachable moments’ when the term ‘mental retardation’ arises.”
But Tom Lewis said the debate is essentially over. Now, it’s just a question of people and organizations catching up with that new reality, he said.
When Down Syndrome was first described as a distinct condition by British physician John Langdon Down in the 1860s, he called it Mongoloidism, a term that seems shockingly offensive to our 21st century ears but was the official, medical term until the 1960s or 1970s.
Tom Lewis said the switch to “Down Syndrome” and “mental retardation,” a broader term which applies to a variety of developmental disabilities, was probably an attempt to be more sensitive.
But another shift has taken place, and now retardation has itself become a term of derision, Tom Lewis said.
He acknowledged that “disability” may itself one day undergo the same type of change. Society will have to cross that bridge if it comes to it, he said. But currently, disability is a non-judgmental, respectful term, which he does not consider a euphemism, so much as a non-loaded description.
He pointed to the recent name change of the state agency that serves people with disabilities as a sign of the times.
On June 30, 2009, the Massachusetts Department of Mental Retardation was renamed the Department of Developmental Services.
“Changing the agency’s name to the Department of Developmental Services reflects the Patrick Administration’s commitment to promoting dignity and respect for people with disabilities,” Secretary of Health and Human Services JudyAnn Bigby said in a press release announcing the name change.
Just 10 states still use the word “retardation” in the names of their departments that serve people with disabilities, according to a guest column in the Quincy Patriot Ledger in 2008 by state Sen. Fred Berry, state Sen. Karen Spilka and Leo Sarkissian, executive director of the Arc of Massachusetts, an organization which itself changed its name years ago from the Association of Retarded Citizens.
“… for tens of thousands of people in Massachusetts and their families with intellectual and developmental disabilities, the word retarded can be the most personal of attacks, yet it remains in the name of the state agency that provides services for them,” they wrote.
On the federal level, the U.S. Senate has taken up “Rosa’s Bill” to eliminate the term “mental retardation” from all existing laws and future legislation in favor of “intellectual disability,” Tom Lewis said.
In addition, the Internet campaign “spread the word to end the word” has accumulated more than 100,000 clicks from people who have pledged to eliminate the use of the word retardation and its derivatives from their everyday speech.
Tom Lewis said the committee’s contention there is no better term is not true.
“Developmental disabilities,” “intellectual disabilities” and “cognitive disabilities” are all widely accepted alternatives, he said.
“Federal and state officials are doing it. Why can’t we do it in Bridgewater?” Tom Lewis asked.
The Massachusetts Down Syndrome Congress, a non-profit organization with thousands of members statewide, wrote Forbes on March 8 to urge her to remove the textbook.
In the letter, Executive Director Maureen Gallagher and Education Resource Specialist Rosalie Forster do write that “the term mental retardation is being debated nationally.”
But they make it very clear where they come down in that debate. They write, “the medical term has been shortened and used as an instrument of ridicule.”
“This could be a literal teachable moment in the classroom, as well as a perfect opportunity for the Bridgewater-Raynham Regional School District to get involved in this important movement.”
Tom Lewis said Ian, 14, has been called a “trailblazer” because he is the only child with significant learning disabilities who is “substantially included” in the Bridgewater-Raynham school district that the Lewises are aware of.
That means Ian spends most of his time in mainstream classes with tailored lessons rather than in special education classes.
The B-R model is “substantially separate,” which means special needs students take separate academic classes and are included in specials like gym, Tom Lewis said.
“From the very beginning, our philosophy has been special education is a service. It’s not a place,” Tom Lewis said.
The philosophy behind inclusion is special needs students benefit from the opportunity to “peer model” and become part of a community, Pauline Lewis said. Ian has been with some of his classmates for nine years.
“The beauty of having him included is they think of him as Ian. They don’t think of him as a label,” she said.
She’s concerned the description of Down Syndrome in the textbook might change their perception of him.
“These kids have known Ian all along. They accept him for who he is. The book puts a different spin on how they’ll look at him,” she said.
Pauline Lewis describes her son as a “typical 14-year-old boy.”
“He loves sports. He’d love, love, love a motorcycle for his birthday. He loves music. He’s just a very genuine person,” she said.
He also swims with the Special Olympics and is involved with Advocates In Motion, an organization that assists children with special needs to become advocates for themselves, Tom Lewis said.
“He’s a very social, social guy. He can go into any situation and make his way,” Tom Lewis said.
Perhaps it’s an indication of how complicated this issue is that Advocates In Motion uses the term “mental retardation” on its website, though clearly in a context that is not meant to be demeaning.
The website states: “We specialize in serving children and adults with developmental disabilities which include those with mental retardation, cerebral palsy, Down’s Syndrome, autism, spina bifida, Prader-Willie Syndrome and other known developmental diagnoses such as Asperger’s, Klinefelter’s, and rare chromosomal disorders.”
Pauline Lewis said she’s absolutely in favor of including a description of Down Syndrome in the textbook. She just thinks it should be modernized.
The Textbook Evaluation Committee decision notes the 2009 edition of the textbook still uses the phrase “mental retardation” but eliminates the word “error.”
Instead of stating, “the extra chromosome is the result of an error during meiosis,” the newer edition states, “chromosomes fail to separate properly during meiosis. People with Down Syndrome have some degree of mental retardation.”
Tom Lewis said that’s an improvement.
The way he would have put it, though, is, “chromosomes fail to separate typically during meiosis” – and he would, of course, drop the “R” word.
The Lewises have appealed the decision and their appeal will be heard in open session at the June 16 B-R school committee meeting.