The R Word: Sticks, Stones, and Rosa’s Law

“What you call people is how you treat them. What you call my sister is how you will treat her. 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.”
–14-year-old Nick Marcellino, Rosa’s brother, in testimony to the Maryland General Assembly

Say what you will about New Jersey. Yeah, we are called the Soprano state, and, yeah, everyone in Jersey is rumored to have an attitude. You got a problem with that? But I couldn’t be more proud of its recent legislation.

The U.S. Senate passed the bill known as Rosa’s Law in August 2010, and in September it goes before the House. Terms such as “mental retardation” and “mentally retarded” will be removed from federal education, health, and labor laws. Additionally, “a person with a disability” is preferred rather than a “disabled person.” New Jersey passed a similar law in June.

The federal government removed “feeble-minded” and replaced it with “mental retardation” over 40 years ago. It was time for a more positive change.

Senator Mike Enzi, R-Wyo., a co-sponsor of Rosa’s Law, describes its intention: “The bill is simple in nature but profound in what it will do when it is enacted. For far too long we have used hurtful words like ‘mental retardation’ or ‘MR’ in our federal statutes to refer to those living with intellectual disabilities. While the way people feel is important, the way people are treated is equally important.”

If the language you use to refer to an individual identifies them as less of a person, you have taken the first step toward what social psychologist Phil Zimbardo has described as the Lucifer Effect. When a dehumanizing term is used to represent a person or group of people, it is not simply a way of putting someone or some group down. It is the beginning of evil. This isn’t simply name-calling. We are talking about it leading to one of the darkest aspects of humanity.

Dehumanization and deindividuation is at the core of evil. It was imbedded in the Holocaust, the My Lai Massacre during the Vietnam War, the mass suicide of Jim Jones and the People’s Temple in Guyana in 1980, the torture of Iraqi prisoners by U.S. soldiers at Abu Ghraib, and Willowbrook, the infamous state school in Staten Island for people with intellectual disabilities. The atrocities were so egregious at Willowbrook that its closing inspired the Willowbrook Consent Decree, a major contributing factor to the passage of the Civil Rights of Institutionalized Persons Act of 1980.

Rosa’s Law is important for several reasons. It changes how we label people with intellectual disabilities. It creates a stopgap on the insidious process of dehumanization. It is essential because words matter. Once you use a term that diminishes human dignity, it allows for the emergence of other factors that lead to mistreatment and abuse. If society condones dehumanizing language, other components of the Lucifer Effect are ushered in. Not the least of these is an indifference to the conditions, well being and needs of the people being branded.

If you think that this is simply a matter of political correctness or an effort at censorship, you are missing the real shift this legislation is seeking. Here is a brief video of the New Jersey Self Advocacy Project by the ARC of New Jersey. The people featured in this video can speak from experience about why we need this law. I encourage you to watch it. More importantly I encourage you to examine your own feelings as you hear their responses.

But change is a long time coming. In this 1962 video President Kennedy asked for “a great national effort” to cope with mental illness and mental retardation — conditions he said “cause more individual and family suffering than any other conditions in American life.”

The statistics, nearly 50 years after Kennedy’s comments, are still sobering. In the United States, approximately 3 percent of the population has an intellectual disability. Compare this to schizophrenia, 1.1 percent, and post traumatic stress disorder, 3.5 percent.

Research has given us clear information on the causes for these two well-known disabilities, but it may surprise you to learn the dominant cause behind intellectual disability.

Poverty.

Poverty may be the most important predictor for becoming intellectually disabled here in one of the world’s richest countries. Financial neediness increases factors that affect intellectual development. Higher exposure to toxins, infections, accidents, poor parenting, inadequate schooling, preterm delivery and low birth weight all occur at significantly higher rates among people living in poverty. All of these contribute to higher likelihood of intellectual disability.

Furthermore, a 2007 study revealed that American families supporting a child with disabilities were:

• 79 percent more likely to worry over running out of food
• 94 percent more likely to have cut or skipped meals for financial reasons
• 73 percent more likely to have been unable to pay their rent in the past year
• 78 percent more likely to have had phone service disconnected in the past year

It’s a vicious circle: Poverty often creates a condition under which an intellectual disability is more likely, and having a child with a disability increases a family’s poverty level.

Money isn’t the root of all evil. Lack of money and dehumanizing those who suffer from that lack is.

Senator Barbara Mikulski, D – Md., who authored Rosa’s Law, explains the need and rationale: “This bill is driven by a passion for social justice and a compassion for the human condition. We’ve done a lot to come out of the dark ages of institutionalization and exclusion when it comes to people with intellectual disabilities.”

You can watch her dramatic introduction of the law on the Senate floor here.

Senator Mike Enzi explains: “Rosa’s Law will make a greatly needed change that should have been made well before today — and it will encourage us to treat people the way they would like to be treated.”

You got a problem with that?

Neither do I. In the words of New Jersey Gov. Chris Christie, “you wonder how it took so long for it to happen.”

For More Information

Senator Mikulski’s description of Rosa’s Law appears here.

Diagnostic Manual — Intellectual Disability (DM-ID)
“The National Association for the Dually Diagnosed (NADD), in association with the American Psychiatric Association (APA), developed a Manual that is designed to be an adaptation of the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition — Text Revision (DSM-IV-TR).