Still Here

What Disability Pride looked like this year

Today is the last day of Disability Pride Month, and I still wasn’t sure what I wanted to write.

Not because nothing's happened. Plenty has. But none of it fits neatly into a story with a beginning, middle and satisfying end. I'm still somewhere in the middle of it.

The title problem

For most of my working life, I have measured myself in job titles. I don’t think that’s unusual. There’s a version of this essay where I pretend I’m above that kind of thing. I’m not. I spent years climbing towards more senior roles. I got there. I became Co-CEO of a national disability charity, which is the kind of sentence that sounds like an answer.

It wasn’t. I left the role at the start of this year, and somewhere in the months since, I’ve had to sit with the fact that reaching the title didn’t resolve the question I thought it would. I thought seniority would be the place where the striving stopped. Instead I got to the top of that particular ladder and found the same question waiting for me that had apparently been there the whole time. Not “what job next,” but something closer to who am I when nobody’s applying a title to me. I still don’t have an answer.

The particular shape of not knowing

I haven’t moved straight into another role. That’s new for me. I’ve spent the months since leaving on consultancy, applications, interviews, and a lot of waiting. The job market is genuinely difficult right now, in the sectors I work in especially, and I want to be careful here because I have no evidence of anything.

Every rejection, as a disabled person, comes with an extra question. Was I simply not the strongest candidate? Or did disability quietly factor into someone’s decision, in a way I’ll never be able to prove and they’ll never have to admit?

I’m not accusing anyone of anything. I want to say that clearly, because it matters. What I’m describing isn’t an allegation. It’s a background noise that disabled jobseekers live with, because we know the assumptions exist, even when we can’t point to a single instance of them. You can’t disprove a feeling. You can only carry it into the next application and try not to let it decide anything for you.

I don’t have a resolution for that either. I’m not going to pretend I’ve made peace with the uncertainty. I’ve just got better at applying anyway, which is a different thing from peace, and probably the more honest one.

What continuing has actually looked like

If I’ve learned anything about resilience this year, it’s that I had the wrong picture of it. I used to think resilience meant absorbing setbacks cleanly, taking things in your stride, that sort of language. This year has shown me it can also look like crying after a rejection email and submitting the next application forty minutes later anyway. I don’t feel resilient, most days. I feel like someone doing the next necessary thing because the alternative is doing nothing, and doing nothing has never sat right with me.

Some of the continuing has looked like writing. I started this Substack as somewhere to put the more vulnerable essays, the ones that didn’t quite fit the structure of my website. It’s become something I didn’t fully plan for. I’ve said openly that I’d like to write a book one day, which is a sentence I still feel slightly embarrassed admitting to in public. This newsletter recently passed 100 subscribers. That’s not a huge number by internet standards. But it’s one hundred people who chose to invite me into their inbox. I thank you more sincerely than you could possibly imagine.

What’s stayed with me is a comment from a reader who told me the piece gave her words for something she was only beginning to understand, and that it was the kind of essay she should have read at school, not only because it might have helped her anticipate a life with chronic illness. I think about that comment often.

One unexpected thing this year has been realising that some of you have been on this journey with me. Not just reading the essays, but recognising yourselves in them. Every time someone tells me I’ve put words to something they hadn’t been able to explain, I’m reminded why I keep writing, even when I’m not sure what I’m trying to say until I’ve said it.

I’ve started to notice something else too, which I wasn’t expecting to admit here. I don’t want writing to sit alongside my career any more, in the gaps a proper job leaves behind. I want it to be part of the career. Not because of subscriber counts, and God knows not because of the money (there is zero!). Because somewhere in the last year I discovered I actually love this. I’m not ready to keep treating it like the thing I do after the real work is finished.

Some of it has looked like policy work I chose rather than policy work that was assigned to me. I coordinated a call for evidence from disabled women and submitted it to the Women and Equalities Committee through The Wheelchair Activist platform. People I had never met, who had no obligation to trust me with anything, sent me their experiences anyway.

I’d always assumed influence belonged to organisations. You worked inside one, you borrowed its letterhead and its authority, and that was how change happened. This year taught me it can belong to individuals as well. Not because I have all the answers. Because people decided, on their own, that they trusted me with something that mattered to them. That’s a different kind of authority than a job title gives you, and I’m still working out what to do with it.

A moment I didn’t understand until later

Shortly before I left my last role, I was in a meeting with a transport minister who thanked me publicly for my work. It caught me completely off guard. As soon as the meeting ended, I messaged my team because I couldn't quite believe what had just happened. At the time, I think I was mostly excited. Looking back, I realise I needed to hear it more than I understood then. Not because I doubted the work itself, but because I hadn't realised how much I needed someone else to remind me that I'd maybe made a difference.

What Disability Pride has meant, this time

Last year, this month felt like a call to arms, because of the benefit reforms working their way through Parliament. Those issues, sadly, haven’t gone anywhere. But this year has sat somewhere more personal for me, and I’ve had to think about what pride is supposed to mean when nothing feels settled.

I used to assume pride and confidence were roughly the same shape. I don’t think that any more. Whatever it is, it hasn’t felt like certainty.

None of that has resolved into anything I can hand you as an ending. I still don’t know what comes after this stretch of uncertainty. Leaving my job was still the right decision. It just wasn’t the end of the story I thought it would be. I’m not going to tell you I’ve found some clarity that makes the not-knowing bearable, because I haven’t.

I started this essay because I didn’t know what I wanted to say about Disability Pride Month. I think I know now. This year, pride hasn’t looked like certainty. It’s looked like continuing.

Continuing to apply.

Continuing to write.

Continuing to ask difficult questions.

Continuing to trust there’s still a place for my voice, even on the days I’m not entirely convinced myself.

It isn’t the kind of sentence that sounds like an answer.

It’s the truest one I have.

Tomorrow, the month ends; I’ll still be here. Still writing.