As a long-time community builder, culture changer and social activist who has spent 40 plus years working with people of difference across the world to build movements that are creating new approaches to learning, caring, healing, community building and transformational change, I am honored to be part of Opening the Doors 2030.
Though my mom passed away from late stage dementia in 2017, our journey together was not the reason I joined the international dementia conversation. That happened a year or so earlier when my dear friend and pioneering physician, the late Dr. Susan Massad, and I created The Joy of Dementia (You Gotta Be Kidding!) after being introduced to traditional (read: biomedical) narratives about dementia whose tragedy-laden narrative is as life-destroying as it is wrong.
It didn’t take being a dementia expert (which were weren’t) to figure out that something else, and something very, and infinitely more humane, creative and imaginative, was needed. Because no matter where we live, what we do, or the abilities we may or may not have, human beings want health, happiness and hope. We want possibilities, not prescriptions. We want to be connected, not constrained. We want opportunities, not fixed identities, labels and diagnoses.
As two people who had spent 40 plus years practicing a non-diagnostic and powerfully effective approach to living, learning, community and caring that begins (and middles and ends) with ordinary human creativity and social relationality, Susan and I believed we had something to offer.
The “something we had to offer” was The Joy of Dementia (You Gotta Be Kidding!), a play-filled workshop and conversation series that gives participants a real-time experience in creating collaborative environment in which everyone, including people living with dementia (PLwD) and the professionals who care for them, is supported to:
While each Joy of Dementia workshop is completely shaped by what participants create, our overarching goal is give everyone, including professionals in the field, the tools and support they can use to go beyond tragedy and embrace possibility in all areas of life; to build communities of support that focus on growth rather than diagnosis; and to create with, rather than control, the emotionality and uncertainty of dementia and, increasingly, our world.
As we all know, dementia isn’t easy on anyone. Does it help that dementia continues to be framed by a biomedical industry whose very existence depends on fear-mongering and stigma? Definitely not. But in my experience, it is the broader culture, including the most well-meaning of us, that makes life for PLwD so much harder than it needs to be. As friends and colleagues with dementia consistently tell me, it is the environments – that can run the gamut from ignorant to patronizing to abusive/life threatening – that cause the most distress.
Though who of us would thrive when told to “go home and die”? Or that we don’t “really” have dementia because we’re so “articulate.” Or dismissed as victims or “objects of care” with no say in issues of life, love, sex, death and more? Or related to as consumers and clients rather than as co-creators, not just of arts-based projects, but of our lives, our communities and the world in which we all live.
But then again, none of us can thrive in unhappy homes. Or in jobs that we hate. Or in classrooms, research labs and other learning environments that are uncreative and boring. Or in conversations and relationships where no one listens.
So environments do matter. In fact, I think it’s fair to say they are the difference between dementia (or anything else) becoming a Big T tragedy rather than a moment in life which, though full of challenge, is related to with humanity, hope and an embrace of even the most dramatic of transformations.
Is creating these kinds of environments easy to do? No. Which has a lot to do with living in an alienated and individuated culture that makes it nearly impossible to see the “we.” This said, it is critical that we develop our ability to “see the we,” perhaps especially so if we practice person-centered care. Why? Because people and environments are inseparable. We are always in environments that determine how we see and relate to others. As those whose loved ones have ended up in long-term care homes know all too well, it is the environment, not the particular disease or condition, that causes most of the suffering and abuse.
So what do we do? We grow our ability to involve everyone, including those living with dementia, in the continuous co-creating of transformational spaces that meet our day-to-day needs even as they inspire us to dream in humanizing new ways.
When it became clear that older adults, people living with dementia, care facility residents and those living in poor communities and communities of color were being disproporationately impacted by Covid, Susan and I knew that we had to respond. So we reached out to the many creative, innovative and radically humanistic colleagues we’d met through Joy of Dementia to join us in creating a positive and collaborative response.
Together, we created Reimagining Dementia: A Creative Coalition for Justice (Coalition), which launched in September 2020. The Coalition has over 1,000 members in 44 countries, all of whom share a belief in creativity (the arts, theater, music, movement, improvisation and more) as a powerfully effective way to challenge the stigma and stereotypes – and address the inequities – of dementia, and to effect individual and social transformation at the broadest levels possible.
Over the last four years, the Coalition has emerged as a grassroots catalyst for change and a visible “hub” and community of support for all. By leveraging the collective resources, experiences and successes of our members and others with whom we are collaborating, we are giving everyone the creative tools, understandings and support necessary to thrive.
If you, your organization, your communities and/or networks are interested in going outside whatever boxes you want to go beyond – and unlearn whatever you want to unlearn – so that your practice caring is inseparable from community and creativity, I’d love to work with you!
Together, we can joyously reimagine what it means to be human, and transform what Anne Davis Basting calls “the tyranny of memory” into the humanizing power of innovation, creativity and imagination.
All of which, as so many have discovered over the years, is as, if not more, “curative” and healing than any pill will ever be able to do.
Here are just a few of the many individual and organizations with whom we’ve found partnership and/or inspiration.
…and if you visit the Joy of Dementia and Coalition websites, you’ll find even more resources and inspiration!
