Advocacy - Keeping Informed & Taking Action

By Jean Miller
October 2004

From the Autumn 2004 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America.

The buzz is in the air and hardly any of us can escape the political commercials, articles and other heated debates that always take place in an election year, especially when we are voting for a President! If you belong to any HD on-line group, you're probably in the midst of some "discussion" on who will make the next best President of this great country! The pro's and con on each candidate could be discussed until the cows come home [in Florida, that's from a hurricane] or at least until the election is over. Those that care, vote. Hopefully, before they vote they've taken some time to educate themselves about the candidates who are competing for your vote!

But what about the rest of the year? What about the changes in the laws that are or will affect not only how you live with Huntington's disease today but most assuredly tomorrow? Are you involved? Do you follow important proposed changes to health care, research, insurance, discrimination, disability, caregiving and other related issues? Unless you belong to some political group, or are closely following health and other issues in the news, by the time most people hear about a change it's more then likely already become a law/enacted and too late for you to change.

I am sure those who have joined HDSA's Advocacy group or who belong to an HDSA Chapter are given information when legislative actions are in the mill that would affect those living with HD. But we all know that there are a LOT more issues that we should be letting our elected officials know, LOUD and clear, how the proposed changes would effect our lives.

Empowerment has been defined as a sense of confidence in our ability to bring about positive changes in the circumstances in our lives through our inalienable right to "life, liberty and the pursuit of happiness". The feeling of "Yes, I Can!" and the will to take actions, to get things done. For families living with HD, empowerment is critical if we want a better quality of life for ourselves and our family.

Advocacy is the act of speaking in support of human concerns or needs. When people have their own voice, advocacy means making sure they are heard; when they have difficulty in speaking, it means providing help; where they have no voice, it means speaking for them.

The dictionary defines advocate as both a noun and a verb. As a verb it means "pleading on behalf of something or someone". A suggested synonym is the word, support. See, you may have long been an advocate without even realizing it. Being an advocate, for any issue, means that the squeaky wheel is often the only one that gets attention in a too busy system. It means fighting for what you believe is right.

What does it mean to be an activist instead of, or in addition to, being an advocate? "Advocacy by individuals can directly improve care for a loved one. However, organized public participation, or activism, is required to alter institutional and professional policies, curricula and stands of care. Involvement is activism, rather than advocacy, if your goal is improving care for groups of patients, or systems of care, etc."

To quote a National Family Caregivers article: "Despite the difficulties we confront, life awaits us. It challenges us, more than it does the families of the able bodied and mentally fit. We all wish it would challenge us less, to be sure, but it is the hand that we have been dealt and the artistry of our life is defined by the picture we create with out "less than normal" assortment of crayons."

What? You say you don't have time to do this or don't know where to begin? Unfortunately most of us don’t have the time. But if we don’t speak out for our own rights, who will speak for us? Can we later complain when our rights are taken away or reduced beyond bringing any help, when we haven’t done anything to stop changes from being enacted?

If you want help in learning how to become a better advocate for issues concerning your life, for beginners you can go to HD Advocacy website for resources that might get you started. Bottom line, if you want changes, then YOU must let your elected officials know exactly how you feel!
HD Advocacy website has links to:

Map of Congress - locate your state elected representatives
Capitol Hill Basics - tips on writing your representative
Elected Officials - get contacts
Issues & Action Alerts -pick your favorite issue/topic and get updates
Government Depts/Agency Search - locate the home page of the agency you're
interested in!
Mega Vote - sign up to receive news that track's how your representatives
have voted

Created and maintained by Renette Davis. Send comments to Renette by clicking here.

Created: Nov. 11, 2004
Last updated: Nov. 13, 2010