A long breakup

Dear Debriefers,

At this stage of the year, writing is like squeezing the last toothpaste out of the tube.

It's hard to reflect on the last twelve months in a world full of crises we have learned not to look at too directly.

This is my attempt. It's about mobility I lost, and some that I gained. It's got crises, elections, and AI. This was my 2024.

Back in January. The Debrief will be on publishing break for a month.

Fundraising for 2025

Last week I asked for help to grow the work of the Debrief in 2025. I'm overwhelmed by the outpouring of support.

Thanks to new contributions from: Ameen, Anne, Annika, Arthur B, Arthur S, Ashton, Charlotte, Chloe, Clive, David, Deborah, Genevieve, Janina, Jennifer, Joanna, Joseph, Hannah, Helen, Katherine, Leia, Louisa, Megan, Melanie, Michael, Mummy Fremlin, Patrick, Phil, Polly, Simon and Tanmoy.

Financial contributions can be made as a one-off or repeating support.

A long breakup with walking

I broke my leg in 2021, and then needed a hip replacement in 2022. From the first break I've had to use a wheelchair full-time, but I was trying to regain some of the indoor mobility I'd lost.

Through 2023 I was slowly improving, even to the point of taking a few thrilling steps without leaning on my walking stick. I ended last year with optimism about ongoing rehab.

This year, things stopped getting better. A couple of falls early in the year shook my confidence. The number of times I could walk across my living room decreased. It turns out I didn't get another moment like that of taking steps without my stick, just me, free.

My fitness fluctuates. Over the summer warmer weather loosens my limbs and I could walk further. Now in colder months they contract, and I have to carefully adjust where I start walking from in case I am stranded half-way.

My goals slip away, and I let them go. I stopped practicing some of the harder things. This is a daily paradox of rehabilitation. Try too hard, and it puts in danger. Try too little, and you won't get better. I give up a little bit earlier each day. Giving up keeps me safe.

Loss locked in

I complained to my neurologist that I wasn't improving. I was looking for hope. But I have a progressive muscular dystrophy and it's hard to regain strength after doing something like breaking a leg. My neurologist was pleased – surprised – that I'd even been able to get back to standing.

I feel cut-off from the body I used to have, and from so many places and people I love. It's hard to imagine how I can be like my wheelchair-using friends, with travel, relationships and full lives. I don't know if I can do what they do. I don't know how I'll be happy.

I've had a few years to grieve these losses and get used to my new circumstances. It no longer hurts so much to see pictures taken from my past life, in rooms I'll never be able to walk into again. Moments of sadness are less frequent. I'm building a new life.

New frontiers, new fears

I'm learning the new possibilities of life in an electric wheelchair. I upgrade from my entry-level model to my first serious power chair – a Sunrise Q300m Mini. They retail in the region of £10-£15,000; I snag a used one off E-bay for less than £3000. After a few weeks adjustment, I can't imagine going back.

And off I go. Almost four years since getting back to the UK from Egypt, I start to plan a trip abroad. A few days in Paris with my friend Tim and his son. I find it psychologically overwhelming to think about what I need in a hotel or what would go wrong if I make a mistake in logistics and accessibility. I don't know what my new body needs.

Tim is someone who's lifted me up in many ways before, and on many other holidays. I need more help now – I can no longer stand up a bed in a hotel room without assistance, for example. And it's only thanks to joint planning that I can get past the access anxiety to book a trip.

We go by train. I've been to Paris before, with my slow walk, and it's a thrill to retake these avenues with the agility of my new chair. My chaotic French brings me back to my love of language learning: the adventure of meeting someone, opening my mouth, and having no idea what will happen.

We find buses with ramps, and the one step-free metro line. A funicular takes us up Montmartre to visit the basilica of Sacré-Cœur. There are unnerving cobbles, steep inclines, and an amazing view. And, round the back, a step-free entrance, unmarked.

In the church, I bow my head in a moment of contemplation. I confront the way the past few years have fractured my spirit. I live day-to-day with more fear: fear of falling, fear of my chair malfunctioning, fear of being by myself, fear of what's to come.

“The world is on fire”

Today, contemplating the year gone by, I remember those we lost, and the crises that shape this moment.

I think of Asimwe Novath, a two-year-old girl in Tanzania, murdered for being a child with albinism. And last week saw the untimely passing of Northern Irish activist Seán Fitzsimons. I never spoke directly with Seán but we did message and interact on social media. I assumed we would have more time.

It's also impossible not to think of the wider world. Violence in the Middle East spreads, and the wars in Sudan and Ukraine continue. Climate change sends us storms and floods but much of the world is still looking elsewhere. The situation of spiralling humanitarian needs and collapsing cooperation was summed up by the Tom Fletcher, new humanitarian chief at the UN, as “the world is on fire”.

These crises create new disabilities and plunge disabled people into extreme challenges. In Gaza, Ghazal, a 14-year-old girl with cerebral palsy, said that since the war broke out “they destroyed what was inside us”. UN experts call the situation of disabled people in Gaza a “tragedy within a tragedy”.

A year of so-called choice

2024 was meant to be a year of choice, with 100 countries and almost half of the world's population able to go to the polls.

In many countries there was work for more disabled people to be able to participate politically whether by voting or running as candidates. This was the case even in countries even where elections were just put on for show, without a genuine choice on the ballot paper. And, as for the democratic practices within the disability community, I had my questions.

In the UK I was thrilled to roll to my polling station, and be part of voting out the previous government. Even if I am underwhelmed by the new one. One case study of how politics impacts disabled people is Esma Gumberidze's piece on the significance of the choice that faced voters in the country of Georgia.

And, of course, in the US, American voters made a choice that will affect us all. Even though Trump's reelection wasn't a surprise, it was still a shock for me, and I spent the days after bewildered, in dread.

Grounded

There's a million things that might go badly in Trump 2.0. Let me tell you about just one of them.

Air-travel for people with disabilities isn't easy. Those of us using assistive devices regularly see them mislaid or broken. But there's been momentum on change: recognising the problem, deciding to do better, and holding airlines accountable.

Under the Biden Presidency, the US has been part of those changes. The Department of Transport made a bill of rights for passengers with disabilities, American airlines was given a record fine, and the Federal Aviation Administration is defining safety criteria for wheelchairs to stay in the cabin.

I was getting cautiously optimistic. Maybe in even a couple of years I might be able to go on a flight and stay in my wheelchair. As well as being more comfortable, it would take away any anxiety about the possibility of it being lost or smashed up. My guess was that this would be on a flight to the US, because they have the corporate and political power to make a difference, and legal instruments to make it real.

Can you imagine a Trump administration taking this forward? Among those celebrating his reelection are the chief executive of Delta airlines, welcoming an end to the “the level of [government] overreach that we have seen over the last four years”. Government “overreach” is precisely what we needed to realise our rights to travel.

Unstuck

But much as things seem stuck, the year also showed how quickly they can change. Over the summer I was glued to news in Bangladesh, spending hours on calls with friends there. Seemingly out of nowhere students led a popular movement that overthrew the authoritarian Awami League after over a decade in power.

And just in the last days, Syria has finally seen the end of the horrendous regime of Bashar al-Assad. His prisons have been thrown open: a day many have spent years dreaming of, but hard to comprehend now it's here.

The year's uninvited guest

For me the bright spots of the year are always people. I've had the gift of lovely visitors, connections with friends old and new, and time with my parents, usually over lunch cooked by my mother. But there's one guest that has started to disrupt the way we connect with others.

Generative AI is taking an ever-growing place in our daily lives. I'm all for assistive tools and experimentation. But its adoption at breakneck speed is reckless. I can sense its spreading (and usually uncredited) use on social media, emails, and even in conversations.

It's good that more people can have access to tools that help with writing. Authenticity, voice and writing skill are all intertwined with privilege and often used to gatekeep. It's important people like me, who worked hard to develop our writing skills without AI, to check some of the ways we tied that to our identities. So I won't focus on how uncredited use of AI for public writing bores me.

But certainly one of my challenges for next year will be to draw a line between assistive uses of AI and where it takes over writing. And I will need to guard that line with the growing pool of folk writing for the Debrief. This newsletter is a publication made by humans, for humans. I'm interested in the personal, artisanal, home-cooked. I'm interested in direct connections. Not machine-generated slop that comes between us.

The disability community faces specific challenges on this. We value authenticity, voice and lived experience, and these are essential to the changes we want in the world. Using AI-generated text for public advocacy is something we need to be very cautious of. Is it “nothing about us, without us”, or “nothing about us, without us and the machines embellishing our stories”?

We adapt and change

Coming to the end of the year, I've already racked up over 700km on my new wheelchair. I've learned to drive it full-speed and started to wonder about how to go faster still.

I'm growing confident enough to consider a new mobility challenge. I'm planning to take my first flight with a wheelchair to Berlin, for the Global Disability Summit.

And as for ChatGPT, I don't know what it's stealing from me and other disabled writers, but I can see on the stats that it's increasingly sending visitors to the Debrief website. Maybe it's not all bad.

That's perhaps the lesson I take from my own life, the students in Bangladesh, and the many disability activists I've had the honour to write about this year. We adapt and change. More is possible than we first imagined.

Wishing you all the best for the new year. See you in 2025,

Peter

Updates, 12th December: The illustration updated with the US flag in its correct orientation.

Rolling on

Further reading. See more about my falling (mis)adventures in a poetic auto-biography of my childhood, told through its falls.

Let your friends know. Sharing the newsletter is how people find it!

Connect. Get in touch. You can find me on Linkedin and Bluesky.

Help us do more. The Debrief is free thanks to reader support.

Acknowledgments

Thanks to Kinanty Andini for an epic illustration of the year gone by. And to Celestine Fraser whose research and conversation shaped my preparation and this piece. And to Adam Spooner and others who helped me think through the new place of AI.

Thanks, as always to the individuals and organisations whose support makes the Debrief possible. Especial thanks to the Debrief partners whose financial support, mentorship and encouragement powered its growth this year.

And to all of you who read, shared or interacted with the Debrief. You made my year. Thank you.