Representation Is Not Enough: Disabled People Need Roles With Real Influence
More disabled people in leadership, public life and the media matters. But a seat at the table only counts when it comes with real power to shape what happens next.
Thoughts from Madeleine
Posts
Stories and plain language guides about speaking up, knowing your rights, and dealing with the systems that are meant to support you.
Stop Creating “Special” Activities: Build Pathways Into Ordinary Community Life
Programs made only for disabled people can give people company, routine and support. Sometimes they're exactly right. But when they're the only place someone goes, they can quietly limit who that person gets to know.
From Content Consumer to Digital Contributor: Valued Roles in an Online World
Online spaces can open doors to creativity, learning, leadership and community. They can also keep people in a passive role: scrolling, watching, being kept busy. The difference is worth looking at.
The System Says No. Who Can Explain Why?
An application comes back unsuccessful and no one can tell you why. When software helps make a decision, knowing what to ask is a system navigation skill. Here are four questions to save.
Beyond the Disability Story: Who Gets to Shape a Person’s Identity?
Ask a service to introduce someone and listen to what comes first. Often it's the diagnosis, then the support needs, then, if there's time, a hobby. That order matters more than it looks.
Included but Still Not Valued: Why Being There Isn’t the Same as Belonging
You can be at the workplace, the school, the club or the community group, with a name tag and a chair, and still be on the edge of everything. Being included and being valued are not the same thing.
How to Prepare for an NDIS Planning Meeting
If you've got a planning meeting coming up and you're already dreading it, you are not overreacting. Most people find these meetings hard. Here's how to make yours less of a fight.
What Does Self Advocacy Actually Mean?
“Self advocacy gets used constantly, in NDIS plans, service brochures and strategy documents, and hardly anyone stops to explain it properly. Here’s what it actually means, and what it doesn’t.”
Five Specialists, Zero Conversations With Each Other
At one point I had five specialists involved in my care, and not one of them had spoken to another. I was the only person who knew the full picture, and I was the least qualified person in the room to be making sense of it. Every specialist looks at their own slice with real
I’ve Explained My Condition More Than My Doctors Have
I’ve lost count of how many appointments I’ve walked into and ended up teaching the person meant to be treating me. Explaining my own condition, correcting an assumption, printing out research because nobody had time to look it up themselves. Patients with less common conditions are quietly expected to do homework the system hasn’t done.
Nobody Warns You What Getting Better Actually Costs
The bill that hit me after I left hospital wasn’t the surgery. It was everything that came after. Taxis because I couldn’t drive yet. A ramp I had to pay for out of pocket while the “proper” one got assessed. Time off work nobody was going to reimburse. I’d braced myself for the hospital cost.
They Approved My Wheelchair. Nobody Delivered It.
Approval isn’t the same as having the thing. I’ve learned that the hard way more than once. Something gets signed off, everyone moves on to the next case, and somewhere between the approval and my front door there’s a gap that nobody actually owns. Assessment, funding, and delivery all sit with different teams, and each