What I have learned about extremely avoidable frustrations
I have now worked at Disability North for over four years. In that time, I have learned a lot. Not just the big, structural, system-level stuff (although there is plenty of that), but also the tiny, every day, head-on-desk moments that make disabled people mutter, “Why is this so hard?” while simply trying to get on with life. You know the kind: well-meaning systems that somehow manage to trip you up at every step.
My job title is Inclusion and Training Lead, which is a fancy way of saying:
“I spend a lot of time pointing at barriers and saying, ‘That. That right there. Let’s stop doing that.’”
At its heart, that’s what Disability North is all about. We exist to help make the North East a place where disabled people can thrive, be independent, and live the life they choose. Not the life that fits neatly into a form, flowchart, or 45-minute care slot.
Direct Payments: (Apparently Still a Radical Idea)
A huge chunk of my last 12 months has been spent working on Direct Payments. At their best, Direct Payments allow disabled people to coordinate their own support, build real lives, contribute to their communities, and do things like… exist on their own terms. Revolutionary stuff!
What’s wild is that Direct Payments didn’t come from a glossy policy think tank. They came from disabled people.
Back in the 1980s, a small group of disability activists basically said to their local authority:
“Hi. This system doesn’t work for us. We have a better idea. Please don’t panic.”
They pushed. They negotiated. They proved it could work. And when it did work, the next logical step was:
“Great. Let’s make this a legal right so everyone can benefit.”
And in 1996, that happened.
That generation left an incredible legacy – one that people like me are still benefiting from in 2026. And yet… I’ve noticed something troubling.
The Spirit of Direct Payments (Now with added fear, and a spattering of bureaucracy)
Somewhere along the way, the Spirit of Direct Payments has started to fade. Not vanish completely, more like slowly wander off for a cup of tea and never quite come back.
There are lots of reasons for this, but one stands out:
- There are fewer people with lived experience in the room.
Fewer disabled people telling social workers, managers, and decision-makers what Direct Payments actually change. Fewer voices explaining the difference between “support” on paper and support that actually works in real life. And when those voices aren’t heard, systems quietly slide back toward what’s easiest to manage – not what works best.
Inclusion Training: Lived Experience Beats PowerPoint Every Time
This links to inclusion more broadly. I firmly believe that the most powerful driver of real change isn’t a training manual, a policy update, or even a very enthusiastic facilitator with a laser pointer.
- It’s lived experience.
Not just stories about what’s broken (although those matter), but stories about solutions. About how barriers can be removed. About what happens when disabled people are trusted, listened to, and given control – just like those activists did in the 1980s.
Why does Disability North Matter?
This is why Disability North is so important. As a Disabled Persons Organisation, it brings people together. It creates space to share lived experience honestly, creatively, and sometimes loudly. And then, it takes those experiences and uses them to challenge systems that aren’t working.
We don’t just whisper politely that things could be better.
We are bold, clear, and occasionally annoyingly persistent about what needs to change.
And after four years here, I can say this with confidence:
“If disabled people are going to thrive, live independently, contribute and choose their own lives, lived experience has to stay at the centre of everything we do”.
