I have decided to coin a new philosophy around the support of people who live with changing cognitive abilities. I’ll publish my first draft right here, but it’s really not an entirely new invention—merely my own synthesis of many threads of thought.
Nothing is truly our own, and my work has always stood on the shoulders of—or linked arms with—many talented individuals. These include many colleagues, and especially many people who are living with a diagnosis of dementia—the “True Experts.”
What was the final spark for further defining this concept? Probably just the latest in a long line of questions I am frequently asked: what do I think about Hogeway, about “memory care,” about Alzheimer’s cafes and day programs, about the US National Plan, the ethics of dementia research, about how we should interact differently with younger-onset folks (or folks with dementia of this or that stripe or stage)—or maybe the recent talk about the anniversary of the Americans with Disabilities Act and the WHCOA mention of “dementia-friendly communities.”
So what I have done here is repackaged, renamed, and hopefully evolved the concept a bit more. And while my manifesto will not be as world changing as Karl Marx’s, it will hopefully do more good than Ted Kaczynski’s:
Toward a Philosophy of “Radical Inclusion”
The hallmark of this philosophy is that we not only stop putting the illness before the person; we actually relegate it to a place where it is no longer a barrier to inclusion and engagement in all things. Here are a few of the precepts that immediately come to mind:
- The person will not be stereotyped or stigmatized—not by a diagnosis of dementia, nor by the age of onset, type of pathology, or any system of staging.
- All opportunities for living should enable diverse engagement, and people should not be segregated due to the label of dementia (or the stage).
- All opportunities for social interaction should enable a similar degree of diverse engagement.
- Different cognitive abilities should be given the same status as other differently-abled adults, with legal protection and workplace concessions to help keep any person gainfully employed who can reasonably do so.
- Those who are unable to be gainfully employed should have access to volunteer opportunities that meet her/his desires and abilities, and to access a full range of civic, leisure, educational, and aesthetic experiences.
- Every person has a right to know her/his diagnosis, and all discussions around aspects of medical treatment should involve the person, physically present, with all attempts made to communicate the information and ascertain one’s preferences.
- Capacity in any decision should be presumed first unless proven otherwise, and incapacity for one decision should not automatically determine incapacity for other decisions without a more thorough and nuanced investigation.
- No national plan or policy discussions should take place without the input of several representative people living with the diagnosis. There should be no tokenism; rather, the same sized contingent that would reasonably represent any other interest group in a policy discussion.
- All ethics committees convened to review proposed research should include representation by people living with the diagnosis.
- Ideally, people living with the diagnosis should inform research of all types—to reflect on the goals and give an opinion as to whether they feel the nature of the research would be of benefit to society at large.
- Communities must retool to become more inclusive of people living with different cognitive abilities (much in the way ADA has changed access for those with different physical abilities—but along the lines of “cognitive ramps,” as I discuss in my talks and writing). And once again, such planning needs to include a fair representation of people living with the diagnosis.
- Education should target not only professional staff and family members, but also the community at large, in order to better accommodate successful community inclusion.
- Education needs to be holistic, proactive, and strengths-based, and focus on wellness, not simply illness. Ideally, people living with the diagnosis should have an opportunity to vet course syllabi on the topic and to actively participate in the teaching.
- Educational conferences should make every attempt to include people living with the diagnosis—on planning committees, as speakers, and as volunteers or paid staffers.
- Stigmatized language regarding the person should be regarded to be as unacceptable as similar language that has been banned from use for other groups, defined by their race, creed, nationality, illness, or ability.
As Daniella Greenwood of Arcare Aged Care once said to me, “At its core, everything is relational.” The separation of people living with a diagnosis of dementia from all facets of life not only marginalizes, stigmatizes, and disempowers them, it also catastrophically disrupts this central relational dynamic, either by severing important relationships, or by reframing them within an unhealthy power dynamic of “carer-sufferer,” which denies opportunities for meaning and growth and leads to excess disability. (Now I’m starting to sound a bit like Karl…)
This is a first draft. Ideas for expansion and refinement are welcome. Meanwhile, I am going to print this out and nail it up on a few doors…