[016] "I Know Myself As A Whole Person"
CAREGIVERS v3: On "living the conviction that Together We're Better," and the simple dignity of recognizing our own capacity to be kind.
Hello, Tired Ones,
Another week, another sign of life, another reason that showing up’s still worth it.
In my work as a writer and designer for culture change, I come across important stories about progress that’s actually working for people. That refuse the false choice: sweet indulgence, or the bitter pill.
Stories that help us to remember: before there was bureaucratic care, or self-care, there was simply, well, care.
So come on in, sit down. For the next few minutes at least, there’s no rush. The week is young, after all.
January’s care workers: Community caregivers
“Before you know what kindness really is/ you must lose things,/ feel the future dissolve in a moment/ like salt in a weakened broth…”
Sourcing notes: Photo by Mihai Lazăr on Unsplash, poetry excerpt by this week’s poet, Naomi Shihab Nye.
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For two weeks now, I’ve been part of a reflection workshop facilitated by four artists and community workers: Caralyn Quan, Emi Hosotsuji, lighthaüs, and Devynne. The intention is to help process last year, and they wisely invited guidance from an Anishinaabe elder we’ve known for years named Gerard Sagassige.
Gerard reminded the group to remember the lives of our ancestors – and the ancestors of the land we live on, for those of us who are guests there. The struggles we’re facing right now aren’t so novel, after all. We can look to the generational footprints of those who’ve already crossed the territory we are walking on.
A song, for pairing
"The Towns We Love Is Our Town" by Bing & Ruth, from the album Tomorrow Was The Golden Age (2014).
A minimalist orchestral ensemble build a warm fire from the cool embers left by the originators of the genre like Phillip Glass. Listen to more.
Sourcing notes: via Wikipedia.
A healthy idea, to chew on
Judith’s Great Questions: 2021, by John O’Brien for the Inclusion Press, December 29, 2020. Featuring a collection of quotes from the writing of the late disability activist Judith Snow.
On caregivers who are “living the conviction that together we’re better,” and the capacity of allied communities to overcome everyone’s barriers to being an active participant in communal life:
Under the category of disability, I am a lack, a problem that is supposed to be fixed if possible, hidden if I can’t be fixed and, at the very least, considered something that shouldn’t have happened.
Those of us who have been labeled tend to go through life as if people do not see us because they are looking over our shoulder at somebody they think we should have been. Someone looks at me and sees the person that doesn’t use a wheelchair, the person they think I would have been if I didn’t have spinal muscular atrophy.
Because to see me as I am is somehow not right, not bearable. The culture constantly is telling me, “This kind of body is right and your kind of body is not.” So even though I know myself as a whole person, I still daily experience the sense that this is not the right way to be. […]
I live in a world that’s about categories and structures. A world in which the category of disability is powerful in my life. I am also in a a personal relationship with the Creator of the universe. Both are true. I am both disabled and not disabled at the same time.
The question is, from which stance can I live my life most power fully both for myself and for the community. From which position am I more able to contribute? More able to experience a fulfilled life? More able to bring richness as a legacy beyond when I will personally be present in the world?
I don’t think disability is the position from which I can be powerful. I think disability is the position from which I can be controlled. […]
The point of inclusion is not to help people who would otherwise be excluded. The point is that when we live separately we all cut ourselves off from the power of joining people’s different kinds of relationships and experiences. Separation simply limits our experience of life. Inclusion brings us a much richer community. To be inclusive means to open up a dialogue.
This is not a discussion about “How can I help you?” It is not an intellectual exercise.
It is a dialogue in action for all those involved to discover what the others bring that has not been seen before, what the others make available that has not been possible before.
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Judith’s engagement with the great questions she investigates in this collection was existential. From her earliest self-awareness until going to bed late on the night she died, she never knew herself apart from the need for personal assistance with the most basic of life’s tasks. Her survival depended on her gift of drawing people into deeper connections and deeper thinking... Always her quality of life depended on the openness of the people who attended her. […]
The struggle for inclusion influences everyone’s capacity… to respond to the great questions in their own life. What is my life’s highest purpose? How do I serve my community and its diverse members? How does my love and desire find expression? How do I cope gracefully with fallibility and failure in myself and others? Judith was extraordinarily passionate and daring in her personal involvement with these questions. Her many adventures and experiments gave living color and credibility to her advice and teaching.
The frame for addressing great questions involving people likely to be excluded became clear to Judith soon after she established the friendships and self-directed system of personal assistance that supported her in pursuit of a full life. Communities flourish when they welcome the gifts of those who have been outsiders. Gifts are revealed by listening deeply to dreaming and identifying seeds for contribution. The cultivation of those seeds is the work of a committed circle of support who overcome obstacles by living the conviction that together we’re better. People have the right to a secure home of their own and reliable ways to get where they want to go – including across oceans. Some people will require adaptive technology, accommodation or personal assistance to bring their gifts to their community. Such assistance, and the public funds to pay for it, should be under the direct control of the person or those who know and love them.
A good practice, to save for later
I Know Myself As A Whole Person—Welcoming The Gifts of Those Who Have Been Outsiders.
As residents of Ontario’s long-term care facilities are left for dead, there is an established movement of people who know what it means to honour the ones who are excluded. For people who were once institutionalized, while being told that it was for their own good, they and their allies can show us the way. They have lifetimes of practice in creating communities where everyone belongs, regardless of their so-called level of ability. One major bough of this work is the “inclusion movement,” which contains many branches – such as one important little organization called Inclusion Press. Every summer since the nineties, the Inclusion Press has hosted a conference in Toronto to share learnings amongst their collaborators and peers advancing inclusion worldwide. This year’s online gathering began with an opening welcome by John McKnight, an elder of their movement who tells many stories from a few of his peers who have passed away.
John McKnight and the inclusion movement provide a rich picture of what community-based care can look like for those who are being labelled and excluded. Or, in his words, they “help us get started with the basic principles of the good life that we seek.” Given his decades of relationships in national and local organizing, I’d like to quote him at length.
He begins with Marsha Forest, a founder of the conference, whose personal motto was “All Means All.” In McKnight’s telling, that meant that everyone has something to give, something that will benefit the rest of us:
All Means All. Not some of us. Not many of us. But all of us. And for Marsha things weren't real or just or joyful, until the gang's all here.
Now, why is All so important? I think the reason is because we all have unique gifts, different gifts. And therefore to be complete in any way, we have to have them all, in order to be creative and the best that we can be. […] We need everybody's gift, especially people who've been kept out. And you know why we need them? ‘Cause we're having a party! A party is a place of hospitality, celebration, fun. A place whose memory is filled with the wisdom of Marsha Forest.
Sourcing notes: video via The Inclusion Press. [See transcript.]
Second, McKnight spotlights Judith Snow, who you heard from above, and points to the bold simplicity of her life’s vision, and the magic she carried by simply insisting that she be in control:
Some people thought that Judith lived in a wheelchair. It's nonsense. She lived in the lives of the thousands of people who came into her presence. Her motto was that "the most important thing for me is to be present."
Where shall I be? Where you are. Because if I am not present, I will not be able to see your incredible gifts. I must be present if you are to see mine, and if we are to share them. If I am present, our friendship can grow. And then we can create a wonderful vision, together and create a wonderful vision.
So open the window. And let's fly to our vision, together. And when we get there, we won't have to worry about walking or chairs, because we can then go anywhere. This can never happen unless I am present.
Sourcing notes: As above.
Finally, McKnight underlines Pat Worth, a neighbourhood organizer who believed in the power of connecting people with developmental complexities:
Pat ran away from an institution, when he was a teenager. In the beginning he slept on park benches. And he finally found his way to community. And when I met him, he contacted me, because he knew that I had been a neighborhood organizer, and he said, "I want to be an organizer.” […] He wanted to organize people who had been excluded, so that they could act powerfully, in their own way, in their own behalf, in their own words. And he asked me to join him as he went across Canada and organized these people who had been so often excluded, with labels like developmentally disabled. […]
And when we had finished, I remember Pat saying to me, "Now John, you can see, that it’s not disability we suffer. We suffer Disconnection.” […]
So, if we recognize that the worst thing we can do, is to deny your giving of your gift. Then, the most important thing is that we connect people, so that their gift can be given.
Sourcing notes: As above.
In closing, McKnight summarized the ordinary but revolutionary principles that each of their lives demonstrated:
All means all. We must be present. We must be connected.
Open the window. Let's go.
“I know myself as a whole person.”
A poem, to cleanse the palate
“Kindness” by Naomi Shihab Nye, from Words Under the Words: Selected Poems (1995).
It begins:
Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.
On the poet’s solitary companionship they found in kindness, and the simple dignity of recognizing themself as an individual:
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.[…]
Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day to gaze at bread,
only kindness that raises its head
from the crowd of the world to say
It is I you have been looking for,
and then goes with you everywhere
like a shadow or a friend.
Something sweet, for the road
And now, a very happy baby—feeling himself in the mirror.
That's all for this week.
Remember: Drink when you're thirsty, nap when you can.
Kind regards,
Chris Connolly
Manager, Personalized Care
(Acting Director, Standardized Care)
Humane Resources Division
The Dept. of Emotional Labour