One of the nicest compliments I ever received for my work came in an unexpected way; in fact, I had to think about it for a while to decide if it truly was a compliment.
I was teaching my 2-day seminar in Denmark for the first time a few years ago. Because I was concerned about barriers that might arise as a result of different languages, cultures, and care systems, I began Day 2 by checking in with the class to see how they were feeling about the material I had presented on the first day.
A nurse with several years’ experience in long-term care raised her hand and replied, “This I the first time in my career that I have seen people with dementia as normal people.”
That comment gave me pause. My seminars do not ignore the very real changes that occur in people’s brains or the very real challenges they face. And yet, in all her years of practice and all the professional education she had received, this was the first time she had been encouraged to see the person living with cognitive change as a person much like her.
That comment took me back to the 2011 “A Changing Melody” conference in Toronto, where I met Jim Mann, a former business executive from British Columbia who was diagnosed with Alzheimer’s at age 58. During our conversation, Jim told me, “My life is not what it used to be—I have to accept that there’s a ‘new normal.’”
Recalling Jim’s remark made me realize that the Danish nurse’s observation was, for me, truly a compliment. In fact, the insight she shared was exactly what I had been attempting to instill in my seminars without fully realizing it: to remove the stigmas and preconceptions around dementia and help us to see the “normal people” who live with the condition.
Ah, but there’s the rub. Stigma is not only omnipresent in our society; it has become our modus operandi for raising awareness. At the same Toronto conference, Christine Bryden said it like this:
What is the cause of the stigma and fear? It’s the stereotype of dementia: someone who cannot understand, remembers nothing, and is unaware of what is happening around them. This stereotype tugs at the heartstrings and loosens the purse strings, so is used in seeking funds for research, support, and services. It’s a Catch-22, because Alzheimer’s associations promote our image as non-persons, and make the stigma worse.
Just a few days ago, an example of the pervasiveness of stigma could be seen in the Chicago Tribune. The purpose of the story was to explore the difficult decisions surrounding advances in early detection of Alzheimer’s. Here are the opening two sentences:
“Before Alzheimer’s begins to steal the mind, hints of the disorder circulate in the blood, potentially giving people a way to find out if they’ll fall victim to the disease years in the future.
“The question is: Would you want to know?”
The article lists some good reasons why an early diagnosis might be valuable for some people, as well as the comments of those who would rather not have any advance notice.
But the problem lies in those first two sentences. As long as we portray Alzheimer’s as “stealing the mind” and something we “fall victim to,” why would anyone rush to a diagnosis and embrace such a stigmatized life? The truth is, once the label is attached, the person begins to disappear in our eyes, becoming diminished, discounted, and even dehumanized.
Fighting this stigma should be our first task in improving the lives of those who live with changing cognition. It is a hard sell, but it is the best way to find new solutions for care and support. What I have learned since that seminar in Denmark is that normalizing people leads us to new insights and solutions to which we had previously been blinded by a narrow, deficit-based view.
This has long been the mantra of the differently abled in our society. The Australian comedian Stella Young, who died on December 6 at age 32, lived with osteogenesis imperfecta, “brittle bone disease.” She recently gave a TED talk in Sydney where she made it clear that she was not put on earth to inspire us, and by all means not to be pitied. She was simply a normal person, doing normal things in the manner that her physical situation dictated.
What Stella wanted was to be seen as a normal person and to live in a society that made accommodations to her needs to enable her inclusion. Such accommodations are both structural and attitudinal. Stella made the statement that “disabled bodies are inherently political.”
So why can’t disabled minds be equally political?
It’s time to take that step. Let’s make 2015 the Year of the New Normal.
Dr. Al Power is author of Dementia Beyond Disease: Enhancing Well-Being.