There exists a relationship between patients with any condition and the researchers. For some conditions there is barely an acknowledgement of each other. For others, such as AIDS, the relationship is much tighter, with a strong knowledge interchange between the two communities.
In Parkinson’s, as in so many other conditions, we use terms such as awareness, advocacy and activism often rather broadly. Sometimes even synonymously. Yet, to my mind, there are subtle but important distinctions between the terms. Awareness of the condition is essentially the entry point into the whole spectrum of patient engagement. It is the point at which the person with Parkinson’s begins to develop an understanding, both personal and general, of the condition. Advocacy is a level up from there. In the context of Parkinson’s, advocacy can be defined perhaps as public endorsement of the importance of research. It is the point at which the person with Parkinson’s changes from being a net recipient of information and/or benefit to a net contributor, in essence sharing their knowledge and experience. Activism can, on the one hand, be seen as synonymous with advocacy but, to my mind, the term has slightly different connotations. Activism is a more dynamic term, suggesting greater vigour. One might almost think of it as a more forceful, aggressive even, form of advocacy. Activism is also perhaps the form of advocacy most likely to effect action.
Let me explain.
The AIDS community is often held up as an icon of the power of patients to exert change. This change was not achieved by gentle advocacy but by forceful activism. A simple Internet search for the term “AIDS advocacy” generates 61,900 hits, while a search for “AIDS activism” finds 186,000 pages, more than three times as many. This is of course a crude measure but nonetheless makes a clear point – people with AIDS are more activists than advocates. And this has translated into tangible results – better access to drugs, improved treatment paradigms and hugely enhanced public understanding of the condition. Indeed, the AIDS community were very much involved in translating AIDS from the death sentence it initially was to a long-term treatable condition.
Similar searches, in the context of Parkinson’s, are illuminating. “Parkinson’s advocacy” yields 5210 pages while “Parkinson’s activism” finds a mere 42. In essence, although we have a community of advocates, we are not necessarily seen as activists. Although it is a simplistic analysis, one could suggest that this inertia is hampering research. The researchers do not know what we, as people with Parkinson’s, see to be the research priorities. Following the AIDS model through, more activists translates into greater action. We are not making the transition. To my mind we need to take that step from polite advocacy to more forceful activism. Because that’s how we will exert action.
The AIDS community has shown us the way or, at least, a way. We need to learn from their successes and failures how best to exert leverage on Parkinson’s research and researchers. How can we most effectively make our issues their issues?
We need to come up with the answers.