The main focus of many advocacy programs is a long waiting list: if we raise more money, we can reach more people and the list will get shorter. Some organizations have found that this approach is not always effective, and have developed innovative alternatives. For instance, Family Services Toronto (with the support of The Metcalf Foundation) has taken a very proactive approach. They noticed that too many people on the waitlist feel like the seasons are passing without things changing. And we focused on ‘Light Seekers’: people on the waitlist open to other types of non-therapeutic supports – from peers, groups, etc. (Read about “From Waiting To Living”.)
Traditional waiting lists are stubborn and persistent – it seems that for every person served, two or three new folks join the list of waiters. In the above story, people are motivated to take action themselves. They learn to solve their problem in other ways, and are able to LEAVE the waiting list. This in turn frees up resources for others.
The strategy behind projects like From Waiting To Living does require a significant shift in the organization’s culture and training practices. Staff are no longer simply administering a fixed program – each intervention requires creativity, a spirit of innovation, and willingness to consider quite new perspectives.
I would be interested to hear about others who have had success with similar approaches!
Recently, I read the book, The Art of Stillness: Adventures in Going Nowhere by Pico Iyer. Now, I am reading SIXTY – A Diary of my Sixty-First Year by Ian Brown. Iyer and Brown are similar in many respects: they both are excellent writers, global citizens and keen observers. Having said that, I would much prefer having Pico Iyer as a guest in my living room.
For Pico Iyer, physical and sensorial constraints actually provide stimulus for deeper insight and – adventure! Following the likes of Leonard Cohen, he turns simple, everyday moments into epiphanies. Ian Brown, on the other hand, seems fixated on the symptoms of physical aging, and says little about the tender spiritual impressions that aging brings. It seems there is nothing in sight but the end.
Much of modern healthcare and social services seems to be about caring for people – focusing on their needs, minimizing pain and waiting for the end. But what we really want to do is care about people and create many magic moments together. This is healing.
Note: Thanks to my old friend Cynthia Dann-Beardsley for inspiring the last paragraph of this post.
Is she there? Who can say where there is? What are the consequences if we get it wrong?
A recent CBC Ideas podcast – Open Minds explores these questions, and challenges widely-held assumptions about the nature of consciousness. Even if a person with a traumatic brain injury does not respond to an MRI scan, she may in fact be conscious on another level. The researchers have found that intensive behavioural assessments at the bedside, actively involving family and friends, reveal activity not detected by the machines.
Unfortunately, the results of MRI scans are often used to justify critical decisions. For instance, the person is labeled “vegetative,” and shuttled off to a long-term care facility, where there is little or no chance of recovery. In the worst case, there can be pressure to harvest the organs, as a gift to people who still have the possibility of a “useful” life before them. So it’s really important to make the best possible diagnosis before making any decisions, especially irreversible ones!
One surprising aspect of the research is the development of 2-way MRI processes that enable the subject to respond to simple questions with MRI signals. This opens up a whole new realm of possibilities for communicating and building relationships with people who were previously thought to be “brain dead.”
The podcast concludes with a discussion about the “philosophy of disability” – the practice of thinking through issues without giving privilege to able-minded or able-bodied perspective. Lots of breakthrough possibilities!
Marshall McLuhan wrote Understanding Media in 1964, and 52 years later, we are still struggling to understand. Media literacy is a wicked oxymoron – a contradiction in terms. I often feel baffled, confused, and even overwhelmed.
What happens when my identity is constructed by disconnected random events? I felt this way yesterday when I visited the Constructed Identities exhibit at the Tangled Arts Gallery.
What happens when I make choices freely, and guide my life accordingly? I am learning that people with visible or defined disabilities make great teachers. For this reason, I am looking forward to the upcoming ReelAbilities Film Festival – understanding media in new ways.
Here are links to trailers for the featured films:
A Whole Lott More
The Way He Looks
The Rainbow Kid
Touch Of The Light
Marshall McLuhan wrote that all the trouble began in 1844 with the introduction of the telegraph. This was the first major challenge to our Western “Gutenberg” consciousness, and electronic technology still continues to disrupt our comfortable mental patterns today. It is truly amazing that researchers like Sara Diamond at OCADU are able to make sense of the (apparent) chaos, and contribute to solving practical human problems. (Watch video.)
McLuhan also explains how the transition to the electronic age involves a reintegration of all the human senses, and of the “tactile” sense in particular. The visual sense becomes much less important. “…the means of storing and moving information become less and less visual and mechanical, while increasingly integral and organic. The total field created by instantaneous electric forms cannot be visualized any more than the velocities of electronic particles can be visualized.” (Understanding Media, 1994, p138)
So it’s ironic that there is so much emphasis these days on information visualization. We also need to emphasize activities and processes that engage and integrate the full sensorium. And this, in a word, is ART. (See the Arts tag on the sidebar for some examples!)
Collective disruption in action
It is widely known that success in the technology industry depends on the ability to disrupt markets and eliminate traditional competitors. The very concept of the “mature” industry is now obsolete – markets are in constant flux. Even large firms like IBM are continuously forming new partnerships and re-inventing themselves in the process.
Organizations that look after the needs of our elders, however, have been largely unaffected by this trend. Even high-end services have been commoditized. Wealthier seniors may have a longer list of menu options, but the basic system design is pre-determined. Will that be vanilla or chocolate, madam?
So, it was with great interest that I discovered Collective Disruption, a joint creative-research endeavour among health researchers and artists. Readers of this blog will know that several months ago I posted a video about their Cracked theatre production – creating a space to grapple with difficult questions. I finally got around to seeing a live performance in Hamilton yesterday. How refreshing to see researchers, actors and people affected by dementia collaborating with a playwright, and what a stirring result!
This group embodies our core value of prevailing personhood. In one scene from Cracked, a daughter comes to visit her mother, who now has advanced dementia. She is very hesitant to approach her, and says, She was my hero. The father, who is holding his wife in his arms says, She still is my hero. Nothing here is easy, comfortable or predictable – it’s all so inefficient. Still, the collective disruption of dementia brings everyone together on a new level of understanding.
People are now realizing that child behaviour “disorders” are in fact not disorders at all. A recent video, Childhood is not a mental disorder, tells the story very powerfully. Growing up is a turbulent rite of passage – and it is a right of passage. Our efforts as parents and educators to suppress it are counterproductive, to say the least.
It is not so easy to realize how many aging “disorders” are in fact natural processes. Millions (billions?) of dollars are spent to “cure” aging, and most of this completely misses the point. Peter Whitehouse, for instance. explains that the widespread hysteria relating to Alzheimer’s disease is largely unfounded. (Watch his videos about the Myth Of Alzheimer’s.)
As Bernard Lievegoed explains, aging is nothing to be feared, particularly if you have been spiritually active in the earlier phases of life. (See “Key Concepts” tab.) Aging brains often present difficult challenges, but this does not diminish the value of the person. It just changes the level of communication.
Apple blossoms, summer foliage and ripe apples bring me joy – and perhaps some sadness when they wither and fall to the ground. And yet what power rests in that tiny hard seed?