Stop Making Decisions About People’s Lives When You’ve Never Lived Them

I’m done pretending this is controversial.

If you have never lived with a disability, if you have never parented a disabled child, if you have never carried the physical, emotional, financial, and psychological weight that comes with it:

You should not be making decisions about disabled lives without disabled people and carers holding real power.

Not advisory roles.

Not consultation sessions.

Not token “lived experience panels” that can be ignored.

Power. Authority. Decision-making control.

You cannot understand disability from a policy document.

You cannot understand carer burnout from a meeting room.

You cannot understand what it means to live this life if you have never:

• been chronically exhausted beyond recovery

• lived in constant hypervigilance

• fought systems designed to say “no” by default

• begged for basic support while being treated like a burden

• feared what happens when you get sick, old, or die

• lived one crisis away from total collapse

If you have never lived this-you are guessing.

And disabled people and their families are paying the price for your guesses.

Let’s stop pretending this is abstract.

Policies are written by people who:

• sleep through the night

• are not on constant alert

• are not managing violent meltdowns, absconding, self-harm, or trauma

• are not navigating schools that quietly exclude

• are not holding families together with nothing left

You clock off.

We don’t.

You talk about:

• “choice and control” while families have neither

• “reasonable and necessary” while dignity is denied

• “risk management” while carers are pushed beyond breaking point

• “safeguards” while disabled people are abandoned

  
  

Your language is neat. Our lives are not.

Here’s the part people really don’t like hearing:

Lived experience is not optional. It is essential competence.

We have learnt-through harm, failure, and hard truth-that decisions affecting First Nations peoples must include First Nations voices at the centre. We are learning, slowly and painfully, that decisions affecting women must include women-not as an afterthought, but as authority.

We understand this now.

And yet disability is still treated as the exception.

Disability policy is still routinely designed by people who have:

• never lived with disability

• never parented a disabled child

• never carried the consequences of their decisions

That is not ignorance anymore.

That is refusal to learn.

Evidence without lived experience is incomplete. Incomplete systems harm people.

This is not a debate.

And stop hiding behind “consultation.”

Rolling disabled people and carers into focus groups, extracting their pain, and then ignoring them when it becomes inconvenient is not inclusion.

It is exploitation.

If lived experience is only welcome when it is polite, quiet, grateful, and non-disruptive-then you don’t want truth. You want compliance.

Let’s be brutally honest about risk.

When systems fail:

• policy makers do not lose their children

• executives do not lose their health

• commissioners do not lose their housing

• advisors do not lose their sanity

Disabled people and carers do.

We are the ones living with the fallout of your “frameworks.”

So no-this is not about tone. This is not about being emotional. This is not about hurt feelings.

This is about the fact that people who have never lived these lives are making decisions that determine whether others live with dignity or despair.

And that is unacceptable.

If you are making decisions about disability without disabled people and carers holding real authority-not symbolic roles, not advisory crumbs-then your system will always be broken.

Because you cannot understand lives you have never lived.

Disabled people are not case studies. Carers are not collateral damage. And our lives are not experiments for your theories (i.e Thriving Kids anyone)

We do not need more reviews.

We do not need more statements.

We need lived experience at the centre-or get out of the way.

Anything less is systemic harm dressed up as professionalism.