I’m tired of others making decisions about my life and the lives of disabled people. They’ve never lived it themselves.

I see it time and time again. People in power lead organisations and shape policies. They often make big decisions without much real experience of disability. Even if they know the facts, it’s different from really feeling what it’s like to live as a disabled person every day.

And the consequences? We feel them.

Take the Timms Review around PIP. Yes, there is engagement with disability charities and organisations. But, let’s be honest: the final decision still rests with the government, with ministers who, in most cases, do not truly understand the lived reality of disability.

Consultation is not the same as shared decision-making.

Then there’s what we are seeing right now with the changes to the Motability Scheme.

I’ll say it clearly: it feels atrocious.

The founders created Motability to give disabled people independence. It truly levelled the playing field. It provided access to work, social lives, healthcare, and freedom. And now, with these changes, it risks doing the exact opposite.

It risks taking that independence away.

It’s hard to accept: the choices that shape our lives often happen without us being heard.

Society expects disabled people to accept it: to adapt and to be grateful for whatever remains.

But I’m not okay with that.

We have a voice. We always have. But too often, it’s only heard at the surface level, not where the real decisions are made.

Not where power sits.

Disabled people should be consulted and also take active roles in leadership and policy-making. Until this happens, the cycle will keep going.

Because without lived experience at the table, assumptions take over.

And assumptions are where things start to go wrong.

We don’t need more well-meaning decisions made on our behalf.

We need to be trusted, to be listened to, and to lead.

Because this isn’t about policy.

It’s about our independence and dignity. It’s also about our right to live our lives fully, without limits set by others.