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Moving Beyond the R Word

by Mary Mazzoni on June 20, 2011

A word can never define or diminish a person’s immeasurable worth. But words have power. Whether uttered thoughtlessly or with intent, a word can have a strong emotional impact. To encourage and build up, or belittle and tear down.

Sometimes clinical or legal terms that have been used for years to provide protections and access to services, become weighed down by negative popular usage and need to be changed.  That time has come again.

Public Awareness Campaign

Self advocates with intellectual disabilities and their allies have worked together on campaigns such as “Spread the Word to End the Word”.  Public service announcements (PSAs) have increased the public’s understanding of the r-word’s impact.

Two powerful PSA samples can be found here and here.

What strikes me most as I watch these videos is the personal power and dignity of each person.  To state clearly their own feelings, to claim their gifts, to say no to what is unacceptable to them, and to contribute in a positive way to their community.

PSAs will not end the use of any word. In a society of free speech, each person can use the words they choose.  It’s a sad truth that racial and ethnic slurs continue to be used against neighbors in our own communities and are even directed at the President of the United States.

May we each receive the healing we need and live our lives toward the future Franklin Thomas describes:  ”One day our descendants will think it incredible that we paid so much attention to things like the amount of melanin in our skin or the shape of our eyes or our gender instead of the unique identities of each of us as complex human beings.”

On our way toward that future, I believe these PSAs are important for at least two reasons.  First, they affect people emotionally in ways that may influence their use of language.  But even more powerfully, they give people with intellectual disabilities a voice – an opportunity to say who they are and who they are not – to stand up for themselves – to call attention to their contributions to the community.  This leads to more than a change in language – it inspires respect.

Changes in Clinical Terminology – DSM-5

The Diagnostic Statistical Manual (DSM) that guides mental health practice is undergoing significant revisions.  This massive undertaking has been in process for several years and the fifth edition (DSM-5) is due for publication in May 2013.

The current edition (DSM-IV) uses the term mental retardation.  However, the current draft for DSM-5 replaces this term with the words “intellectual disability” and includes some changes to the diagnostic criteria.  The proposed DSM-5 language pertaining to intellectual disability can be found here.

It is important to know that until DSM-5 is published, DSM-IV remains in effect.  This means that psychologists, who must use DSM terminology for reports, will continue to use the term mental retardation until the new edition is published.  The term will therefore be included in reports that relate to health, education and habilitation services. When the term is used in these ways, the intent is in no way disparaging.  The systems that provide services based on DSM diagnosis must use the standard language of the diagnostic manual.  Change is on the way.  But until DSM-5 is published, we will continue to see the term used by systems that provide services our kids need.

Rosa’s Law

On October 5, 2010, President Obama signed into law S.2781, also known as Rosa’s Law.  This law, named after Rosa Marcellino, an eight year old girl with Down Syndrome, will change the use of terminology in Federal health, education, and labor laws pertaining to people with intellectual disabilities.  The changes will be phased in as laws are reauthorized and regulations are revised.

This will affect laws such as IDEA (special education), ADA (Americans with Disabilities Act) and laws pertaining to vocational rehabilitation and developmental disabilities services.  Again, we are looking at gradual change.  The term intellectual disability will replace current language as federal laws are reauthorized and relevant regulations are published. There will be a trickle-down impact at the state and local level as agencies change their names and their terminology in response to federal changes. The process will take years – but it has begun.

In the meantime, although it can be painful and distasteful to us, we will navigate the systems that provide the services our kids need.  We’ll remember that terms used by those systems do not define our kids.   And those terms are changing, because of the power of self advocates.

R is for Respect

So let’s work together to teach our children to respect themselves.  To speak for themselves, to live self-determined lives and contribute to the common good.  And let’s work together with professionals from various systems, in a mutually respectful way – as our children plan for their future. One step at a time.

Your thoughts?

What do you think about the Spread the Word to End the Word campaign?  As we transition away from the r-word, do you have thoughts or feelings you’d like to share?  We want to hear from you in the comment section below.



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