WINAHEAD

Rosa’s Law: the Power of One Person Still Makes a Difference

“What you call people is how you treat them. If we change the words, maybe it will be the start of a new attitude towards people with disabilities. If you believe she’s ‘retarded,’ it invites taunting, stigma. It invites bullying and it also invites the slammed doors of being treated with respect and dignity.”

Just when I think that the earth has tilted so askew on its axis, that one person can’t make a difference in the world, something happens that proves me wrong. A few weeks ago, I was doing some preliminary research on P.L. 111-260, the 21st Century Communications & Video Accessibility which was signed into law on October 8. While reading the remarks by the president at the signing of this act, my belief that one person can make a difference was renewed.

In the audience that day was nine year-old Rosa Marcellino, one of the hundreds of thousands of Americans with Downs Syndrome. President Obama introduced Rosa, her brother Nick, and her parents, Paul and Nina Marcellino saying it was inspiring to have Rosa present. The president then spoke briefly about “Rosa’s Law,” which he had signed into law on October 5, 2010.

Rosa, who lives in Edgewater, Md., is the inspiration behind “Rosa’s Law,” which strikes out any mention of “mental retardation” and “mentally retarded” from federal law and replaces them with “intellectual disability” and “individual with intellectual disability.”

Mental retardation is the official term used in federal and state education law. With the support of Maryland state delegate, Ted Sophocleus, Rosa worked with her parents and siblings to have the words “mentally retarded” officially removed from the health and education code in her home state of Maryland. The Maryland General Assembly passed the legislation in 2009. Senator Barbara Mikulski (D-Md.) met with the Marcellino’s and promised to champion a similar bill at the federal level if Rosa and her family were successful at the state level. What became S. 2781 and known as “Rosa’s Law” began as a family effort when Rosa’s elementary school changed the coding on her education plan from “health impaired” to “mentally retarded.

President Obama acknowledged that amending the language in all federal health, education and labor laws to replace the terms “mental retardation” and “mentally retarded” with “intellectual disability” and “individual with an intellectual disability,” may seem to some people like a minor change.

Saying he spoke “a lot of wisdom,” the president then quoted Rosa’s brother, Nick, who became the family spokesman, speaking at the statehouse in Annapolis and later testifying before Congress.

“What you call people is how you treat them. If we change the words, maybe it will be the start of a new attitude towards people with disabilities.”

Changing federal laws to eliminate the R-word is one thing. Ending the cultural habit of insulting people with intellectual disabilities is another. Erasing “mental retardation” from the books doesn’t necessarily mean that intellectually disabled people will no longer be stigmatized. Ohio State University professor Christopher Fairman, who studies cultural taboos, points out that “retard” is just another name in the long list of terms that have been introduced, stigmatized, and then moved away from. Still, Nick Marcellino was correct when, in his testimony before the Maryland General Assembly, he also said:

“If you believe she’s ‘retarded,’ it invites taunting, stigma. It invites bullying and it also invites the slammed doors of being treated with respect and dignity.”

Perhaps to some, the language changes enacted through Rosa’s Law (S. 2871) are minor. Nevertheless, this law, and the effort of a little girl and her family are a significant milestone in the ongoing battle for dignity, inclusion and respect of all people with intellectual disabilities. And – my faith in the power of one person to make a difference in the world has been renewed.

The Platinum Rule: Disability Etiquette in Daily Life

The basic “rules” of disability etiquette are an expression of the Platinum Rule.

This summer, I helped with a mock interview workshop in which some of the participants were visually impaired. That experience reminded me that even today, not everyone is confident they understand what constitutes “good manners” when interacting with individuals with disabilities.

Many people have little or no experience of meeting, working or communicating with people with disabilities and may be apprehensive about having an individual with a disability in the classroom or as an employee, coworker or customer simply because they are fearful they will say or do the wrong thing.

Individuals with disabilities may also be apprehensive about what the classroom, or workplace environment will be like and about the attitudes of those they will interact with when they begin classes or employment. Therefore they are sometimes reluctant to express a need or concern. The result is that nothing is said—thus further isolating individuals from one another. Communication and good manners (etiquette) go a long way to dispelling apprehension and misperceptions.

I’ve written about disability etiquette” and offered training for staff at my institution, but the opportunity this summer reminded me that it never hurts to have a disability etiquette refresher.

The word “etiquette” comes from old French and describes a set of written and unwritten rules that govern socially acceptable behavior under a variety of circumstances in a particular culture at a particular time. Typically, these rules, based upon social norms, are not codified in criminal or civil law; but rather are enforced at an individual level by fear of community disapproval.

“Disability etiquette”, then, is a misnomer; guidelines addressing how to approach people with disabilities were initially created to challenge social conventions rather than to reinforce them. Misnomer or not, it seems to me that the “rules” of disability etiquette are an expression of the Platinum Rule.

If you are unfamiliar with The Platinum Rule, it is a moral principle related to the Golden Rule: “People should treat others as they would like to be treated, instead of – as the Gold Rule dictates – projecting yourself onto others and treating them as you would like to be treated.”

I’ve also seen the Platinum Rule expressed this way: “Treat others well because they are living a different life [than you are].” (Bracketed material my emphasis.)

The Platinum Rules for Disability Etiquette

Don’t focus on the individual’s disability
Don’t treat successful individuals with disabilities as “super-heroes.”
Don’t “sensationalize” a disability by the language you use. (e.g. “crippled with,” “afflicted with,” suffers with, etc.)
Don’t use generic labels for disability groups, (e.g., “the deaf,” “the retarded” etc.)
Emphasize abilities, not limitations. (Similarly, do not use emotional descriptors such as unfortunate, pitiful, etc)
Don’t use condescending euphemisms. This is rude and offensive. (e.g., physically inconvenienced, and physically challenged
Show people with disabilities as active participants of society.

The 2010 by 2010 Campaign

This summer, while doing some research for an article about the 20^th anniversary of the ADA, I ran across a reference to the “2010 by 2010 Campaign.” Curious, I decided to investigate.

The 2010 by 2010 Campaign is a project of the National ADA Symposium. The project goal is to collect 2,010 “Proclamations of Recommitment” to the mission of the ADA by the end of 2010. Through the 2010 by 2010 Campaign, state and local governments, schools and colleges, businesses, organizations, service providers, and advocates are invited to join the Symposium’s “Proclamation of Recommitment” to the spirit of the ADA. The proclamation can be found at Proclamation of Recommitment and is also reproduced below.

Anniversary of the Americans with Disabilities Act

a Proclamation of Recommitment to Full Implementation of the ADA

On July 26, 1990, President George H. Bush signed into law the Americans with Disabilities Act (ADA) to ensure the civil rights of people with disabilities. This legislation established a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities.

The ADA has expanded opportunities for Americans with disabilities by reducing barriers and changing perceptions, increasing full participation in community life. However, the full promise of the ADA will only be reached if public entities remain committed in their efforts to fully implement the ADA.

On the 20th anniversary of the Americans with Disabilities Act, we (_name of public entity_) celebrate and recognize the progress that has been made by reaffirming the principals of equality and inclusion and recommitting our efforts to reach full ADA compliance.

NOW THEREFORE, the ______________ (County Board of Commissioners/City Council/Mayor/President) do hereby reaffirm our commitment to work toward full ADA compliance in _________________ (name of public entity).

Information about how to submit a proclamation can found at “Submit a Proclamation”. The list of entities that have already submitted a proclamation can also be found at “The List.” As of September 25, 2010, 1,578 proclamations have been received; only 432 more are needed to meet the goal.

At least 43 Nebraska entitles and 45 individuals have submitted proclamations; in Iowa 84 entities have done so. In Nebraska, signees include the cities of Grand Island, Lincoln, Omaha and Bellevue and the Governor and Legislature of the State of Nebraska. In Iowa, signees include the State of Iowa, the cities of Cambridge, Cedar Rapids, Ames and Des Moines, and Linn County.

The National ADA Symposium is a national initiative of the ADA Network and is hosted by the Great Plains and Rocky Mt. ADA Centers. The ADA Network consists of 10 regional centers established in 1992 by the U.S. Department of Education to provide information, training, and technical assistance on the ADA. The Great Plains Network serves the states of Nebraska, Iowa, Kansas and Missouri; the Rocky Mountain ADA Center provides information on the Americans with Disabilities Act (ADA) to Colorado, Utah, Montana, Wyoming, North Dakota and South Dakota.