Time To Change

jo ann cropBy: Jo  Ann Simons

Everything about my new car is different. The location of the cup holders have changed, the layout of the audio system is not the same as in my old car and I am having trouble figuring out how to operate the defrost.

And when did the white appliances in my kitchen become passé and who decided that stainless steel was the correct choice?

Change is everywhere; sometimes they are minor inconveniences and other times they shift our collective thought and action.

We have to get used to both kinds.

This week we learned that, finally, the Social Security administration will become the latest federal agency to start using the term “intellectual disability” in lieu of “mental retardation.” Officials cite the change in response to the “widespread adoption” of the term “intellectual disability”.

We are witnessing the final end of the use of the “R” word. The movement to eliminate this word from our language began by self-advocates, who fiercely objected to its use and championed its elimination. They were joined by their families, friends and organizations (Special Olympics and Best Buddies  started The Spread the Word to End the Word campaign) who together stewarded a new era.

This change did not occur, as in the case of my cup holders, because of  engineers and designers of social policy, but from the widespread grass roots activism of persons with disabilities, their families and professionals.

Photo by Twitter user @sunshower70- http://bit.ly/19G5OX0

Twitter user @sunshower70 effort to end the “R” word: baked cookies for her daughter to distribute in school, to show support for her brother – http://bit.ly/19G5OX0

This has reinforced my belief in what Margaret Mead  said, “Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.”

I propose that advocacy be considered the most important program for funders and policy makers, instead of an afterthought. Think of the possibilities!

Imagine what we could accomplish if the small group of committed people had armies of supporters behind them.

Jo Ann Simons is a Disability Advisor to the Ruderman Family Foundation and President and CEO of the Cardinal Cushing Centers

Read our last post: An Invisible Hate Crime

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Filed under Disabilities rights, Disabilities Trends, perceptions of disability

6 responses to “Time To Change

  1. JasonLieberman

    Jo Ann, as always you make some good points, but I fear when policymakers and funders see advocacy as a primary part of their mission, they may seek to set the agenda and in doing so may crowd out the voices of people with disabilities and their families. The “R” word campaign was good for all because, as you stated above, self advocates began the campaign. Funders and organizations joined later in support of the self advocates’ agenda. That is they joined an existing advocacy campaign rather than dictated the campaign’s agenda to the disability community.

    If organizations, agencies and funders plan on taking an more active role in advocacy, we need to figure out a way to make sure those with disabilities have more of a voice within the decision making process of those funding and policymaking organizations. We need to have more people with disabilities on Boards of Directors, grant review committees and other positions with true power and influence over to set the agenda. Only by taking such steps can we insure that the voice of the people for whom the advocacy is supposedly occurring actually gets heard.

    • Jason, Thanks for reinforcing the importance of making sure that those with disabilities have a voice. We have much to do to ensure that persons with disabilities are at the head of the table.

  2. Advocacy is the driver of innovation and policy change (and language adaptations!-so happy that the R word is vanishing!) Self-advocates and family members can do so much to raise issues, concerns, cite values that provide foundations for change so that they can inform others as well as participate on decision making bodies, forums, committees and the like. When I met with my first “inclusion” committee I wondered why there weren’t any people with disabilities on the committee? Why were others making decisions without those whose lives were directly concerned? We were so new at this inclusion stuff that we were still in “fix it” mode, doing things FOR people with disabilities, not WITH them. It is changing and that’s why it’s so important for self-advocates to be at the table. Great blog!

    • Thanks Shelly. It was a lesson I had to learn myself as I was so used to advocating for my son from the moment of his birth-for medical care, early intervention, inclusive schools, camps, sports and all the rest that comes with raising an independent child, that I had to be reminded that the torch needed to be passed to him.

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