reflections related to disability advocacy, family and (needed) cultural change
Monday, December 01, 2008
Unexpectedly Effective Advocacy: Strategic Use of Information II
Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.
Information and perception are always working—either for us or against us—with some attention and a few skills you can make information one of the most effective tools in your advocacy toolchest. I wrote about the setting some parameters about what to present and what not to present to support your goals a couple of weeks ago.
Now, you do NOT need to be perfect or understand EVERYTHING to advocate. And doing SOMETHING is always more powerful than doing nothing, but as a community we have full lives and want to get the most impact for any of our advocacy efforts. We don't have time or energy to waste--we need to think strategically.
I was pondering this at work this week and I thought something I learned as a nurse might help... When nurses are learning to adminsiter medications we are taught a little 5 item checklist that helps us keep track of what we are doing. When giving meds nurses need to make sure they have:
-The right patient -The right drug -The right dose -The right route -The right time
We call this little list the 5 Rights (clever, huh?) and when I think about it, this little list has some parallels in advocacy.
The right patient. It is obvious (I hope) what this means to nurses--and their patients!
In the case of advocacy I think this would mean consider your audience. Who are they? What do they want? What are their responsibilities? What do they know? What do they worry about?
Are you talking to self-advocates, parents (new or seasoned?), professionals, activists, college students or children? Or someone else entirely...
Adjust your presentation accordingly. Your examples, use of jargon and demeanor may need to change to meet the needs of a different audience--don't give the children's presentation at grand rounds at your local medical center.
The right drug. Again, it's fairly obvious how this applies to nurses. Advocates can translate this to "right message." Presenters--whether at IEP meetings or before congress--want to have a consistent pro-disability message.
Bobby Silverstein, famous for advocating for disability rights and his role in writing the ADA when he was on Sen. Tom Harkin's staff, gives this framework for issues that are pro-disability. He says pro-disability policy lead to greater:
-Equality of opportunity -Full participation, -Independent living and -Economic self-sufficiency. (Bobby Silverstein, 2003)
Right dose. Patient tolerance for medications are very individual and specific. Too much of a medication can kill....too little will not be therapeutic.
The disability advocate needs to consider this thoughtfully. When we explode or over-do in our advocacy we can kill our issue with our audience... but if we do not say enough or say it strongly enough it won't be effective. Fortunately, there is a whole spectrum of possible responses between those two extremes. Attention to this issue alone can increase the effectiveness of your advocacy immediately!
Right route. Nurses need to know if a med should be given by mouth, injected or rubbed on the skin--these are not interchangeable!
Advocates need to consider whether their particular audience will respond most to 'heart' or 'head' messages. Or a combination of the two. What media should be involved? Consider using story. Author Robert Putnam points in his book Better Together that stories have the "...possibly unique ability to express thought and feeling simultaneously..."
Right time. Suffice it to say WHEN you take your pills matters. Some need to be given on an empty stomach, others need to be given with food, or close to bedtime, or not...
Advocates also need to consider WHEN they approach their audiences with their messages. Sometimes you must respond when the iron is HOT--the issue is burning now and being heard NOW is necessary if you want to have an impact. Other times it is best to strike when the iron is COLD--when the issue needs a long term approach or shouldn't be handled at the same time as some other burning issue.
For example, when the movie Tropic Thunder came out disability groups needed to put together a visible response immediately--protesting it a month later would have been useless. But working with the studios to increase their understanding and their working relationships with the disability community was a long term project that needed to be handled over time. (In fact we are starting to see the effect of those efforts now!)
I think having a framework for handling information strategically could be useful whether you are working on an individual need, or trying to change the world. Not as a formula, but as a framework for considering your options. Give it a try, let me know how it goes!
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.