A disabled farewell to 2023

Reflections on my year and how Judy's passing changes our movement
A simple watercolour illustration of Santa on wheels, and carrying a big bag of gifts.
Santa and his wheelsleigh, by Tan Kuan Aw

Dear Debriefers,

The world is a mess, the news is horrifying, and I'm tired.

But the end of the year is a chance to step back. Before I take a publishing break over the holidays, here are reflections on my year, and the changes I see in disability advocacy.

Like many of us, I came into 2023 to discover where 2020 and all its changes had left me. And this year was a turning point for the disability movement. We lost Judy Heumann, who had been leading our community right up until she passed. Her legacy shapes us, and leaves us with questions about where we are now.

There's plenty in the year to say farewell to, and much to forget. And, in our activism, I find hope for the year to to come. Things might get better.

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New world, new mobility

It's a few years since the pandemic brought me back to Colchester, after over decade outside the UK. It was a difficult time to make connections, made harder by breaking my leg, and complications that came after. This year I found what my new life looked like.

After two years of living my life closely around covid restrictions, I took my mask off. I stopped insisting on meeting outside in the cold and wet. I went back to restaurants and bars, and had friends round my house without asking them to do health tests first. I hugged and shouted.

Just last week I did my first live performance of spoken word poetry. I've made new friends and joined the board of the Mercury Theatre. I saw shows there growing up and am impressed by the attention they give disability. And, most delicious of all, I heckled the local Thai restaurant into getting a ramp.

Gradually the rehabilitation on my leg and mobility continues. Every day I practice walking back and forth across my living room, and I can now do it many more times than I could at the start of the year. But it's still a long way off what it was before my accident.

I enjoyed this year more than the previous one, but I wasn't enjoying it all the time. My life is very different from what it was before the pandemic. I've thrown myself into work and together with what goes on in life, my energy is often used up. My mental health is fragile, and sometimes comes crashing down, my mind swirling into mud.

Getting back on the road

Some of the biggest changes in my life are in travel. It was constant in my pre-pandemic jet-set life. But since I broke my leg and started using a wheelchair full time, I hadn't stayed over anywhere other than hospitals. This summer I managed my first overnight trips.

I started off simple, to James and family in Cambridge. James is an engineer and enthusiastic to figure out accessibility. I was grateful for how proactive he was, as the logistics are new and tied to big emotional questions of identity and independence.

It went well, and set me up nicely for a more complicated trip across the country to Devon. Many emails to the hotel about the height of the room's door threshold later, I got there and got to emcee at the wedding of close friends. I'm back on the road. But it's hard not to look in the rearview mirror.

Shifting battle lines for disability rights

It's not just my own life where I face a different set of opportunities and challenges. Our wider movement and activism was also transformed by the last few years.

The pandemic and response to it exposed societies' inequalities, and how awfully quickly many were to throw those with “pre-existing conditions” under the bus. It showed how much we need mutual support and grassroots efforts to step up when governments and bigger organisations are missing in action.

It's a constant reference for us in thinking about what will happen in the next crisis. And as covid continues to make people ill and cause long-term complications, even referring to the pandemic as over is a symptom of that abandonment. Just because I've joined so many in going about without a mask doesn't mean that it's safe, or that everyone can take the same risk.

Losing our Heumannity

In March, Judy Heumann passed away, aged 75. She led disability activism for over half a century. From 1970 when she sued the New York City's Board of Education right up until 2023 with her podcasts still being released a couple of months after she died. And she has a co-authored book due out in 2025.

Judy was the most prominent in a generation of disability activists formed our movement and changed the status quo for disabled people. It's a movement that successfully challenged the assumption of segregation and fought to establish legislation based on equality and rights.

Judy made space for us to shine, and our mourning continues. We unite around her memory and carry on learning from her in books, exhibitions, songs, and events. One of the ways I grieve Judy is regretting the things I didn't get to share or discuss with her. When we lose a loved one, life's challenges and joys remind us of their absence.

Judy's passing also leaves us many questions about where the disability movement is today. Earlier in the year I reflected with Alberto Vasquez and Catalina Devandas about how we face our new battles. We wondered whether activism lost its core values and got “trapped in formalities”. Does the disability movement too often go it alone without solidarity with other causes? Are the next generations of activists being brought in?

The basics still aren't there

It's easy to remember 2023 through its crises. Some dominated the headlines, like the continuing war in the Ukraine, or the awful violence in Israel and Palestine. And around the world there's been an increase in climate-related weather disasters.

Other crises, no less important, didn't get such long-lasting attention. To name just a few, civil war in Sudan broke out and continues to devastate the country, as does the one in Myanmar. Violence spiked in the Congo, an earthquake hit Turkey and Syria, and Libya was devastated by floods.

Like the pandemic did, these crises further reveal how the basics aren't there or how easily they're lost. Yes, societies are much more likely to theoretically accept disability rights than back in the 1970s, but all too often the practice doesn't back it up. Schemes set up to help us can turn into the new means of our exclusion.

So much of disability activism is insisting on the basics of everyday access so we can live our lives and take part in social activities. This year I've had to figure out where I can go with my electric wheelchair, try to convince places to get ramps, and try to catch trains. I didn't try air travel yet.

And there are many disorienting changes to this world that hasn't met our basic needs yet. Crises in cost of living puts our rights at risk and climate breakdown just speeds up. Improvements in artificial intelligence leapfrog our expectations and open up wide possibilities of transforming economies and societies, not necessarily for the better.

It's not clear that our governments are equipped to deal with all of these changes. And it's hard to believe that they'll be proactive about making sure disabled people's lives and rights are protected and enabled as our societies continue to change so quickly.

2024 is a year of big elections but the choice on the ballot paper often isn't a choice at all. But there are choices we can still make, and the world can be different.

Believing in a better future

Rebuilding my mobility in rehabilitation and tentative travels also mean rebuilding my belief. The belief that I can travel, that I belong as a guest at my friend's houses and at their weddings. Just because I appear confident and work on these issues doesn't mean that it comes naturally to me. And that belief certainly isn't always there.

It's easy to give up, and not just because it's impossible to fight every battle. Worse than that, it's too easy to accept all the messages we find in society that we don't belong, that our lives aren't worth as much, and maybe things would be easier for everyone if we stayed on the side.

This is perhaps the deepest gift that Judy gave us: the belief, to a point of insistence, on belonging. Learning about her life is learning about time after time where she insisted and refused to compromise with a “special” solution. She believed in herself, and she believed in us.

And this is why, even though the news is horrifying, covering it through a disability lens leaves me with more hope than despair. All over the world, disabled people and our allies are insisting that things don't have to be the way they are. Things can be better, they should be better.

Here's to making it a happy new year. I'll see you in 2024 – there'll be plenty for us to do.


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Thanks to Tan Kuan Aw for the illustration of Santa.

Celestine Fraser helped understanding the year gone by with research and thinking it through. And as ever, this piece benefited from review by Áine Kelly-Costello.

The conversation I had with Alberto and Cata was on the Strength and Solidarity podcast, an essential platform for understanding human rights today (with transcripts).

And most of all, thanks to everyone who read and shared and commented on the Debrief this year. You make the newsletter what it is. All best for holidays if you have them, and warm wishes for the new year. I'll be back in the second half of January.