At this point in my life, I am much better at drawing pictures, or structured learning and thinking pictures (mind maps), than writing out a long list of arguments.
I have “street cred” in making the points in these two mind maps. Been there, done that.
Before making the main points I’d like to tell a short story. In addition to the information in this first mind map, between 1993 and 2010, I ran many “evaluation and technical assistance centers” for the US Government on their identified and funded innovative and targeted HIV/AIDS Services programs.
The biggest lesson I ever learned as a professional during this period was that the people with the disease knew a lot more about the problems with the service system (and how to fix them) than I did. I was “schooled” in 1993 by 19-year-old Scott, a brilliant young man who was the President of Bay Area Young Positives, a peer organization. Although he never graduated from high school before he graduated to the streets of San Francisco, he knew far more about how to fix the system than I did. Before I could meet with him at a next scheduled meeting four months later, he had died from AIDS.
I thought about Scott for years as I do about many others like him I met over the next five years who have been helped by the miracle of modern combination antiretroviral therapies. In my professional judgment, at the time I knew him, Scott was probably in advanced stages of AIDS-related dementia. Yet at that time, he knew more about why the service system failed than I did. Even though he was handicapped by the communication system of the time (words and more words and anger and more angry words), he did make it clear that we were all fucked up and did not understand facts standing right in front of our noses. He was right.
Pictures and websites and 25 years of advancement in communication methods should make us better at jointly solving problems with the service system.
Sadly, in the area of dementia, these methods have not been used to their full potential.
We have to fix the websites of most dementia-related organizations. Those websites are not providing information to all (INCLUDING and especially to persons with dementia) as well as they should nor are they encouraging all to react to the contents although they do encourage all to make contributions, join research studies, visit their web stores, and come to their clinics for treatment.
Ask someone with dementia how they feel about your dementia website. You might get “schooled.” And that would be good.
Click on the images to expand them.
Why I feel I can “yell” at you …
and what I have to say …
The two most important doctors I have for trying to remain self-sufficient are Dr Google and Dr Me. Both are largely dependent upon useful and quality and relevant information on the Internet. Unlike my providers who require appointments weeks (months) in advance, Dr Google and Dr Me are available to consult 24/7 without cost. Make your website communicate better to Dr Me (who has dementia) and you will help him and Dr Google maintain my ability to understand and care for myself.
Make it so. Please!!!
PS. The methods I advocate throughout my blog and book are ones that cost pennies per day for an individual to use and which would also greatly improve websites very inexpensively. Mind maps, sketchnotes, cartoons, doodles, color coding, informative videos … all ideas that work better and are not expensive to implement.