Thoughts from Madeleine
Stories and plain language guides about speaking up, knowing your rights, and dealing with the systems that are meant to support you.
Someone ran a risk score on my file once before I’d said a word to anyone. Age, history, a few flags in a database, and out came a number that quietly decided how urgent my case was. Most people have no idea how much of this happens before a human actually looks at them. These
I know someone who got discharged from hospital at quarter to five on a Friday. No equipment sorted. No support worker booked. No way to reach anyone until Monday. She spent the whole weekend in a chair she wasn’t even supposed to be in, waiting. Anyone who’s worked in the sector will recognise this pattern
Every assessment I’ve ever sat through ends the same way. My actual answer gets translated into a code, a number tucked into a category that someone else will read later without me anywhere in the room. I get why coding exists. Systems need a way to compare and track and justify funding across thousands of
A friend told me her new symptom checker kept missing things that were obvious to her. I wasn’t surprised. I asked her what she thought “clean data” actually meant to the people who built it. She hadn’t thought about it that way before, and honestly, most people haven’t. Clean data usually means the mess has
I found out early, which you’d think would make things easier. It doesn’t. The earlier your diagnosis, the more paperwork seems to follow you around for the rest of your life. Every application asks the same question wearing a different outfit: prove it again. Show them you still have the thing you were born with,
We’re all born into systems that were built long before we arrived. Funding rules, eligibility criteria, forms that ask the same question five different ways. Nobody hands you a manual. I remember sitting in a meeting early on, listening to someone explain why a support I needed didn’t fit the criteria. Not because I didn’t
I used to think policy was the boring part of this work. The paperwork you do after the real advocacy happens. I was wrong. Policy is where advocacy either sticks or disappears. You can have the best conversation of your life with someone about their rights, and if the system underneath them doesn’t change, you’re
I notice who’s in the room. Every time. Who’s leading the meeting, who’s on the board, who got asked and who didn’t. It’s not paranoia. It’s pattern recognition after years of watching decisions get made about people who were never invited to help make them. Representation in leadership isn’t a nice to have. When the
Nobody wants to talk about the money part of disability and advocacy. It feels impolite somehow, like you’re supposed to be grateful for support and not also want a proper income. I don’t buy that. Economic participation, having fair access to work, training, and the chance to build something of your own, isn’t separate from
I’ve been in rooms where I was technically there and completely invisible. Nobody was rude to me. Nobody said anything wrong. I just wasn’t really seen. That’s the difference between being present and being included, and it took me a long time to find the words for it. Social inclusion isn’t about ticking a box
People sometimes talk to me like I came up with these ideas myself. I didn’t. Everything I do sits on top of decades of work by disability rights movements around the world, Social Role Valorisation, the UN guidelines, researchers and advocates who fought for language and frameworks long before I showed up. I’m not the
Someone told me once that treating everyone exactly the same was the fairest way to run things. I remember staring at them, trying to work out how to explain what was wrong with that in one sentence. Here’s my attempt now. Equality hands everyone the same ladder. Equity asks how tall the wall is in
