Go give them their flowers

Dear Debriefers, 

When I found out that my dear friend Arley, a renowned writer, Paralympian, and educator, died in March of 2023, one of my first responses was “Crip grief never gets easier.”

Crip grief is a feeling of brushing up against your own mortality while grappling with the reality that someone you loved is no longer here. I define it as mourning that you can feel in your bones because you’re disabled, or the person who died is. 

The truth is – for many of us disabled folks – we are often here for a good time rather than a long time. Nothing brings that more into focus than when your friends unceremoniously die.

As I think about love and loss, it makes me think about building community, and the need to recognise people sooner rather than later. 

To be disabled is to have your plans disrupted. We have to make time and space to give people their flowers when they’re alive. 

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About this edition

John Loeppky is a freelance journalist living in Canada.

Kinanty Andini is an illustrator and digital artist, from Indonesia.

We shared our lives

I couldn’t tell you the exact origin of my friendship with Arley. I know it started in a gym, probably in British Columbia. Her, an accomplished Paralympian turned PR professional. Me, an awkward kid with a basketball dream and not much else. 

After we both stopped playing, we talked more, often over text. We never shared the court and yet we shared our lives. Together we grew to understand our pasts as para-sport athletes and how it formed (and sometimes warped) our ways of looking at the world. 

Arley’s number is still in my phone. Barring any technological catastrophe, it always will be.

A privilege disabled people aren’t always afforded

I’m in my early thirties and have lost multiple teammates, friends, and mentors – most without any indication that our last conversation was imminent. In the last few years the disability activism world has also lost titans, people like Judy Heumann and Stacey Park Milbern.

To grow old is another form of privilege disabled people aren’t always afforded. To be disabled is to grieve, not only your own imagined futures, but those of others – past, present, and future.

How will we remember them

With any death comes an inevitable question, though: how will we remember them? There might be awards given in the memory of a well-known figure, a posthumous scholarship, or a fundraiser for their family.

In many people’s cases, including Arley’s, there’s a legacy to hold onto. She wrote multiple books and blogs, she taught classes, she’s well known in the communities she left behind. 

For Judy, we have a book, a documentary, and a longstanding history in the American disability rights movement. For Stacey, we have a syllabus that is continually referenced.

Tinu Abayomi-Paul, who passed last year, left a strong social media community and an obituary written by a disability-focused publication. Australian Stella Young left us with the TED talk that coined the phrase “inspiration porn” and she’s been remembered through a statue, as well as an award, among other ways.

Evidence of who we were

Having a legacy to hold onto comes in part from what we make during our lives. In the words of Mia Mingus, another US-based disabled activist, “we must leave evidence”:

“Evidence that we were here, that we existed, that we survived and loved and ached. Evidence of the wholeness we never felt and the immense sense of fullness we gave to each other. Evidence of who we were, who we thought we were, who we never should have been. Evidence for each other that there are other ways to live--past survival; past isolation.”

How do we protect this evidence and how does the approach change when it’s someone well-known versus someone that isn’t? How do we make sure that the new generation knows who came before?

Stuck in the shadows

Too many disability stories are stuck amidst the shadows. With Alex Green I worked on a project where high school students helped document information about the MetFern Cemetery, located in a now-closed institution for disabled people in Massachusetts. 

This is a place with a deep history of trauma, of experimentation, of inhumanity.

The cemetery is the resting place for 298 people, previously incarcerated in the institution. They were buried in the decades from late 1940s to 1970s. Their names are not listed, just a letter representing their faith, and a number.

What I learned while working on that project is that a path forward is also shown by the names that we don’t know. The dead can tell us many things.

For one, that society has long tried to forget us. History is written by the victors and, in the context of disability, a “victor” just means a survivor. Someone who is willing to document and share that history.

Giving flowers

Thinking about loss makes me ask if we did a good job of giving people their flowers while they’re still Earth-side.

There are, of course, formal ways to canonise our living and our dead. In the US, the National Wheelchair Basketball Association has a hall of fame. Canada has the Canadian Disability Hall of Fame, and the UK passes out honours.

While these accolades are nice, they are often a result of lives hard-fought rather than lives where people were acknowledged or supported by anyone outside their inner circle. Awards should exist, of course, but they can’t be the whole picture. 

For me, giving flowers means sending a disabled academic an email after you read their article. It means buying from a disabled person’s shop and leaving a nice review. It means sharing someone’s work on social media and – if possible – throwing them a few quid in the process.

How do we make that part of our practice, to honour those who came before us, and our contemporaries? Lucky for us, there are plenty of people already doing that work. I spoke to two of them.

Taking the torch

Someone who has had the disability history torch passed to her is Australian artist Maddie Little. She is “still in shock” that she won the inaugural Stella Young Award, in recognition of her work as a young disabled artist, in 2018. 

“The idea that I could be considered worthy was monumental. It also felt like a huge responsibility, because I'm like, ‘Okay, this has been generously given to me. I need to practice what I preach and what I believe in, and I need to do good work now to hopefully make Stella proud.’” 

Little, and I’d say this even if she weren’t a friend of mine, has an impressive resume all her own. She runs a disability-led disability arts festival called Undercover Artist Festival, and she also finds time to be a published researcher and actor. When I asked about giving flowers, she said:

“A huge component of flower distribution is never being afraid to be that person who recommends people or is like a cheerleader, even when they're not in the room. […] Some of the most important work that I can do in that space is actually in the quiet moments behind closed doors or in meetings with emerging artists.” 

Little sees more opportunities within the disability arts spaces to build community and exchange, and connect with others beyond borders:

“I wish there were more opportunities for international exchange for disability arts and disability-led arts, I think that we have so much we can offer each other.”

Bringing other people in

In the US, Elijah Armstrong is another prominent disability community figure who finds himself working to preserve and build on the legacy of community leaders. 

In collaboration with Judy Heumann, Armstrong founded an award to support disabled high school students who are making change in education. Armstrong says Heumann demanded that the award not just be named after her:

“Judy was really insistent on not being the sole face and then bringing other people into these spaces with her, which was something that was really cool to be able to see up close.”

Indeed, Armstrong celebrated one of the legacies Heumann helped build with her network of connections. In 2023, the winners of the award for high-school students were given mentorship from leaders in the disability community, and he credits that to Heumann.

Outside of that award, Armstrong explained to me that a barrier to disability legacies being preserved is just how precarious advocacy work is in the first place. If you’re struggling for resources or attention to make the work happen, then there is unlikely to be money or energy to catalogue it at the same time.

But he also points to how the work itself endures:

“The disability community has done [activism] for a long time, for generations, well before I got here and will do so well after I go.”

Widening community

Another challenge of maintaining and building disabled legacies is that we often don’t want to talk about them, or about disability at all.

Armstrong feels that, even within the American disability community, knowledge of activism can be limited outside of specific circles. For instance an intervention like the Capitol Crawl in 1990 isn’t well known, even though it was part of what secured the subsequent passing of the Americans with Disabilities Act.

In Armstrong’s view, to give flowers requires collaboration with activism and policy spaces that haven’t always thought about disability.

“Part of the challenge is so often the disability community is not thought of…I think it's cool to see people getting involved in accessibility for Black Lives Matter and racial justice issues. I think it's really powerful and important to see and to drive home that disability intersects with all these other identities as well.”

May their memory be a revolution

I like to borrow from Judaism and phrases it uses to remember those past: “May their memory be a blessing”, or “may their memory be a revolution.”

And when I struggle with grief, as I did writing this piece, another place I turn to is a poem, “You get proud by practicing”, written by Laura Hershey, a writer and disability rights activist who passed away in 2010. Here’s a small excerpt:

“You do not need
a better body, a purer spirit, or a Ph.D.
to be proud.
You do not need
a lot of money, a handsome boyfriend, or a nice car.
You do not need
to be able to walk, or see, or hear,
or use big, complicated words,
or do any of the things that you just can’t do
to be proud. A caseworker
cannot make you proud,
or a doctor.
You only need
more practice.
You get proud
by practicing.” 

It takes practice to come to grips with disability identity, and practicing to mutually create a better world. In the disability community we talk a lot about justice, making a change, revolution.

Let’s not wait so long to tell people they were a part of that.

Through her words

As for my friend Arley, I hold onto her memory through her words, her writing about being disabled, about being a mother, or about planting a garden. And she wrote about how she passed on what she learned from her work:

“When I teach, I try to hold that tension: the need to plan versus the fact that so many of the things I’ve built happened in ways I couldn’t have planned for.”

You couldn’t have planned for this friend, but I’m glad I could be a part of it all the same.

John

Outro

Further reading. See John's first Debrief essay, Paralympic Paradoxes.

For more from John, see his website, Linkedin, or Bluesky.

For more from Kinanty, see her on Linkedin.

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Acknowledgements

Thank you to Kinanty Andini for her work on the illustration for this story.

Secondly, thank you to the readers and organisations who support the Debrief and without whom this work would not be possible. It’s a hard time to highlight the good in the world and Peter is certainly doing that. 

And as always, I’d like to thank Peter for his masterful edits. When I asked him what the timeline for this article should be, he said, “Before you die,” so I’m glad I could meet that deadline.

In all seriousness, there is no place I’d rather tell this version of the story or memorialise Arley. There is no crip grief like crip grief and there is no editing like crip editing.