Wednesday, April 17, 2024

Art for Change: When Connection and Conversation Are the Outcome

"(dis)robe Gaia Gown", worn by the artist, in conversation with a fellow Covid long-hauler.

I could see him drifting across the polished concrete floor of the convention centre, blue-jacketed arms spread into a perfect reflection of the very wide smile that punctuated his neatly-trimmed ebony beard. He was studying the very sad-looking portrait of my recently-divorced brother that adorns the train of the gown I had on display. He circled the gown slowly, hands splayed as if to catch every bit of story it offered, taking it in with sparkling eyes and smiling, smiling, until he looked into mine, and said, "did you make this?"

"Yes," I answered. "It's called '(dis)robe: Nursing Gown'. Tell me about your big smile!" And he told me he felt seen. We talked for a long while about how crippling our societal expectations can be for people of all genders. We talked about how trapped the painted man looked, even though he held the mannequin by a dog-collared lead. We talked about how the patriarchy crushes all but the wealthiest people--it was never about men versus women; it's just a few billion pawns fighting for survival under the shoe of someone much more powerful. And what if we were to work together, instead?

I just finished a four-day stint of exhibiting some of my wearable art pieces at the Art Vancouver fair. This gave me opportunity to reflect quite a bit on why I do what I do. My purpose as an artist hasn't changed, but it has deepened and I suppose I feel it more intensely, now. I'm here to connect people with each other, with their own authenticity, and with a more equitable, sustainable future. My art is a conversation-opener. Conversations like the one I had with this blue-jacketed man are the cornerstone of social change. They're the space where the change takes root in our hearts.

See those two people talking at the back of the image below? They're talking. Their hearts are making change. During this show I also spoke with many children who wondered what was "going on with the boobies" on that Nursing Gown, or whether they could touch the insects on the Gaia Gown, and I saw children pull their mothers around the skirt to identify the flowers they knew. People wondered where they might wear such unusual dresses, or why anybody would want to. "Definitely not to work!" One of them exclaimed.

The main piece of this winter's artistic journey for me was the Long Covid gown, '(dis)robe: Hospital Gown' (image at the top). It involved over 300 selfies contributed by Covid long-haulers from around the world, transferred to an altered donated hospital gown. From the back of the gown, trailing from a drawing of my son's hands (because when my Long Covid was at its worst, he used to help me walk by gently pushing my back), was a hospital-blanket train covered in some of the most common symptoms of Long Covid. These are the symptoms that millions of people worldwide live with every day, often confined to home or bed, invisibly. So the train is supported by a wheelchair that is also partially hidden. There's symbolism in everything I do, and this was my opportunity to give a voice to the millions of people who, like me, live mostly invisibly with Long Covid.

And when I got too exhausted (shaky, blurred vision, heart palpitations) from wearing the gown and talking to people, I could just step back and sit in that wheelchair. A purpose-built wearable art piece! This is what comes of making art that truly deals with my own personal experience.

I invited many people from the Long Covid community to attend, so it was no surprise that this was a conversation piece for long-haulers, nurses and other health professionals. Some people even came to delight in finding their own faces on the gown! But it was also a chance for us all to be visible to others--many of whom had never realized Long Covid was happening in the world. Education is change-making.

This weekend was, for me, an opportunity to see other people becoming; changing, evolving, and questioning themselves. It was an opportunity to hug so very many lovely souls, and to express gratitude for their thoughts and opinions. There were people just visiting from afar, people who came to support artist friends, and people who were also showing work at the fair, or working to organize. There were people who came just to buy a pretty painting, but ended up chatting about climate change, gender politics, and the healthcare system. My own display confronted people with sometimes-difficult topics, and yet they bravely engaged. This reminded me that while we sometimes want to hide from challenges, humans are mostly courageous, and generous with our intentions.

I was not the only artist there trying to change the world through art. Humanity is a great kaleidoscopic spectrum of beautiful people, reaching across so many circumstantial divides to connect and thrive. We're like all the network of roots, mycelium, compost and microorganisms in the forest floor: a vibrant bubbling potion of hope, and a foundation for continued life. In following our own paths with so many tentative, compassionate feelers, we're finding our way.

Video of (dis)robe: Gaia Gown performance

Wednesday, April 3, 2024

(dis)robe: Hospital Gown

This wearable art project about Long Covid is finally finished and filmed (thanks to Taliesin River!) It's also available to see on Instagram if you like, in a different format:
Thank you SO much to the hundreds of people who participated, who shared this journey and who have held my heart as I worked on this. It has been my huge honour to represent you all in this way; to create something that can speak for us.
(dis)robe: Hospital Gown will be performed and displayed at the Art Vancouver fair, April 11-14, 2024. 
(To see full-screen video, click "YouTube" when it begins playing, and watch on YouTube.)

Text of the poem from the video (Emily van Lidth de Jeude):
It's Not Over
                  from behind the windshield
           waiting for my blood-test
           I see you getting        back to normal
                  walking on the sidewalk like
                                              it’s easy
                                because Covid is over
    telling me
           don’t worry
                  it’s safe now
           just get some exercise
        you’ll feel better       stop masking
           because covid is over
              and you don’t see
    that behind my mask I’m masking
                         my disability

because now my normal is different than yours
           and the Covid is not over
              when I walk       the blood
                pools in my legs and my lungs constrict
                  and the pox come back       the shingles
                    and the screaming       lungs
                     hold fluid         exhaust me
                     and the world becomes blurry
              I can’t see
you anymore because my mind is blurrier than the windshield

but it’s not over when I get home       I will stop masking
     what I’m living with       collapse       shake
           never mind the bone-ache
        I will treat my fever and sleep
     for a week
and it won’t be over

but now, because a blood-test means hope
with a hand on my back he walks me to the lab
he took the day off work to drive me here
I long to work again     just walk       even
                                     to feel valuable
but I don’t tell him that
because his burden is already
              too much

in the morning he rolls me
presses pillows under me
and pulls underpants onto my feet
so I can reach them       he strokes my hair
and brings me food and asks
if I’m OK
                         and I say better
                          than yesterday
                     I’m afraid of his fear
              and it’s ironic consolation
          that I’m one of many millions
             that my small adventure
                today    to the lab
                 is not even possible for so many of us
                    for whom Covid
is not over

    and four years of doctors wringing hands       telling us
           there’s nothing they can do and we should learn to
                         maybe we just have asthma       or anxiety
                              maybe we’re just sensitive
                                                    or lazy
                  and it never ends
                                                                 and it’s not over
          we keep persisting
          go for more tests
          visit more specialists
          explain to more family
                                                     it’s not over
                                                 but we keep persisting

and in moments of despair
looking out from the pall
we quietly tell other long-haulers
because they’ll understand                    we wish
                                                          it was over
                  and in silence
              with blurred vision
         and shaking hands
                we hold each other up
           by the hundreds and thousands
                                                 by the millions
                                               we keep persisting
                              it’s not over