Exploring the Art of Occupation

I was invited by the Board of the NHS Trust I work for to come and speak, sharing my lived experiences as a member of staff with a long-term health condition and disabilities.

I spent a long time thinking about how I wanted to approach this. With so much currently in the news about supporting children in school with special educational needs, I decided to write a letter to my 10-year-old self. This felt like a powerful way to demonstrate the barriers that people often face, and the impact these experiences can have over time.

This isn’t just a reflection on childhood, but on how those early experiences can shape confidence, opportunity, and identity across a lifetime.

It’s also about more than getting it right for children and young people. It’s about getting it right throughout life. Too often, systems and services are not designed with lived experience in mind. If they were, things could look very different.

I’m sharing this in the hope it helps people better understand the barriers that exist, and why listening to and learning from lived experience matters.

Letter to My Ten-Year-Old Self

Dear Rachel

Today, you will sit in a primary school classroom
while every other child is handed the same letter about their secondary school place.

You will be handed something different.
An envelope.
To give to your mother

You will not open it in class.
You will sit in the car while your mum stands at a payphonereading a decision that will change your life.

The local authority has decided you should attend a special school
not the local secondary school with your peers and friends.

They have read about your cerebral palsy and your dyslexia.
But they have not met you.
They have not watched you learn.
They have not even spoken to you.
A decision has been made about your future without you being in the room.

This is the day you begin to understand how systems confuse diagnosis with limitation.
How paperwork can outweigh potential.
How labels can shrink what others expect of you.

It will not be the last time.

Your mum will refuse to accept that decision.
She has already spent years challenging assumptions about you
meetings full of deficits, forms reducing you to categories,
conversations happening around you, not with you.

She will fight. Calmly at times. Fiercely at others. Persistently, always.

And you will hate it.
You will hate being different.
You will want to blend in.
You will want ease more than you want justice

It will take years before you understand what she was really protecting

Your access to opportunity.
Your right to be assessed as yourself.
Your future from being narrowed at age of ten.

Later, you will understand that advocacy is not about winning an argument
it is about changing a life course.

And you will be grateful in a way you cannot yet comprehen.

You will go to mainstream secondary school as a statemented child.

That document will describe how cerebral palsy affects your balance and fatigue, and how dyslexia shapes the way you process language.

On paper, it will look clinical. In reality, it will be protective.

It will unlock practical changes.

A banister will be fitted to steps that once felt unsafe.
Uniform rules will be adjusted so you can wear boots that support your ankle.
Teachers will provide materials in advance.
Instructions will be explained verbally as well as written.

In exams, you will be given extra time and an amanuensis so your handwriting and spelling do not distort your grade.

Not because expectations are lowered.
But because assessment should measure knowledge, not the mechanics of writing.

These adjustments will not reduce the standard required of you.
They will remove barriers. And slowly, you learn

Inclusion is not special treatment.
It is thoughtful design.

In 1998, you will be named Teesside Young Woman of the Year.

You will feel proud.
And later, you will recognise the ableism that can sit beneath praise. Disabled people are often celebrated for overcoming barriers that should never have existed.

At university, you will start to fight your own battles and advocate for reasonable adjustments, like typing your notes because handwriting is painful, slow and exhausting. You will print typed entries onto adhesive sheets and stick them into paper records, so your documentation is legible. You will face resistance for doing so.

Years later, everyone will type their notes.

The dictation software you fought to will become ordinary.

You will begin to see a pattern.

Adjustments introduced for disabled people often improve systems for everyone.

At interviews, you will disclose your disability.
You will feel the room shift.

You will ask for adjustments.

You will ask for interview questions in advance.
Some will say that is unfair. That it gives you an advantage.

You will explain that you are not asking to be measured on memory under pressure.
You are asking to be measured on preparation, judgement and thinking.

Professional competence is not about being quick.
It is about thinking well.

When you qualify as an occupational therapist, disabled students will be placed with you because you will ensure adjustments are in place.

You will say repeatedly that reasonable adjustments are not acts of kindness.
They are legal duties.
They are about equity.

You will find that you are often seen as either too disabled to cope or not disabled enough to qualify for support.

You will learn that how you are perceived shapes what you are allowed access to.

You will begin to notice the pressure to present different versions of yourself depending on who you are with, just to be understood.

Throughout your career, you will sit in rooms where reasonable adjustments are debated.

You will hear questions about cost.

What you will not hear often enough is the cost of not putting them in place.

The loss of talent.
The sickness absence that could have been prevented.
The toll of constant advocacy.

And every time you have to fight, it takes something from you.

As your career progresses, you will begin to notice something that gives you pause.

The more senior the role, the further away it can sometimes feel from the people services are designed for.

Meetings replace contact.
Strategy replaces story.
Data replaces conversation.

And you will start to ask how we keep the person at the centre of it all.

So you try to close that gap.

You build communities.
You create spaces where people with lived experience
speak openly

At first, you are told it is unprofessional

Later, those same spaces are endorsed by organisations and professional bodies

Then the world and your health will change profoundly

Covid.
Pancreatitis.
Thirteen months in hospital.
Learning to walk again
for the third time

Life shrinks to one room.
One bed.

You learn what it feels like when the most important conversation of your day is routine for the professional in front of you.

You learn how much a small act of kindness matters

You are labelled a “delayed discharge.”

A phrase that measures you against system efficiency rather than human complexity

You fight for rehab, for physiotherapy, for equipment.
When you cannot fight, others fight for you

The legal framework around reasonable adjustments will become intensely personal.

And you will return to work this time using a wheelchair.

People will tell you that you need to walk more.

They will not understand why you use a wheelchair if you can mobilise at all.

You will find yourself explaining pain, fatigue, and the constant calculations you make each day about energy and what matters most.

Walking may be possible, but it comes at a cost. Autonomy includes choosing how you move.

You worry that decisions about your future may again be made by people
reading paperwork rather than meeting you

And yet you will continue.

You will be brought to tears by a fire officer who tells you that you cannot go upstairs because you are a fire risk.

You will feel exhausted when that fire officer and your line manager argue about a Personal Emergency Evacuation Plan written for you, not with you.

You will attend countless meetings about a wheelchair access lift that never works when you need it.

You will send polite emails.
You will receive apologies.
You will be told how much money has been spent.

And yet, it will still not work.

You will learn that these are not one-off experiences
They are patterns.

You will learn that preparation is survival.

You will ask about accessibility in advance.
You will ask again.
You will say, are you sure?

You will arrive early because you know there will be an access issue to resolve that others never have to think about.

And this is what you will carry with you into leadership spaces.

You will speak about early intervention.
About designing services and workplaces with lived experience present.
About what happens when decisions are made without understanding the person in front of you.

You will speak about inclusive language.

You will explain how the use of acronyms can exclude people, particularly those who are neurodivergent.

You will encourage people to use clear, use accessible language. To say what they mean, so that everyone in the room can understand and take part.

Because language shapes culture.
Culture shapes behaviour.
Behaviour shapes experience.

You will say that kindness is not additional work.
It is core work.

Because

The child holding the envelope was never the problem.
The student asking for adjustments was never the problem.
The staff member waiting for a working lift was never the problem.
The patient labelled a delayed discharge was never the problem.

The problem was a system making decisions without meeting the person

A system that valued paperwork over potential.
A system that normalised barriers

Systems can choose differently

They can listen earlier.
Make reasonable adjustments the norm.
Design inclusively.
Place lived experience where power sits.

And you
you will spend your life reminding them why that matters.