The book behind FADA
Not For Me, Without Me
Three letters to three sons from a system that refused to write to any of them.
Pa Joof & Dr Ancha Bala-Joof
A father who builds technology, a mother who is an NHS GP, and three sons the state kept deciding about without ever asking them. This is what a decade of that looks like.
THE BOOKWhat it is
Not For Me, Without Me is not a memoir. It is not a policy paper. It is three letters, one to each of our sons — Abdou, Jibreel, and Imran — that describe what it took to advocate for them through a SEND system that never once addressed them directly.
The letters are the ones the state should have written. They were not written. So we wrote them.
The book is the intellectual foundation of The Family and Disability Alliance, which we co-founded. It argues one thing: no decision made about a disabled child, without asking that child.
Not for me, without me.
EXCERPTSFrom the letters
A few pages, ahead of the rest.
Chapter 1 · The Opening Letter
Somewhere between the twelfth panel meeting that decided your future without inviting you, the sixteenth report describing a child none of its authors had properly met, and the annual review that closed with the SENCo saying “these plans are all pretty much the same anyway” — we understood the pattern.
The system wasn’t broken. It was working exactly as designed. It was just that its design had never included the voice of the child at the centre of it.
The letter to Abdou
They spent a decade deciding you were fine, and then a decade wondering why you weren’t.
They spent every one of those years writing about you. None of them writing to you.
The letter to Jibreel
For eight years, they wrote your symptoms up as psychological. Anxiety, they said. Attention-seeking, they said. One consultant said it three times before finally listening.
Anti-MuSK Myasthenia Gravis, we now know. A rare auto-immune condition that could have killed you before anyone found it.
Excerpts are indicative and may change before the book is production-locked.
Why the book comes with FADA
The book is the argument. FADA is what we do with the argument.
Every family who joins FADA receives a copy as part of their welcome pack. Every professional who completes our Practitioners’ Programme reads it as a core text. Every MP briefed on the Right to Be Asked campaign is offered one.
The book will be free or heavily subsidised for FADA members, and priced for the general trade market. Its royalties are covenanted — 50% of the authors’ net royalties for ten years is dedicated to FADA. Buying the book is one practical way to support the alliance. So is joining as a family member, which is free.
ENDORSEMENTSWhat people will say
Endorsements, when they come.
We’re showing these empty on purpose. When an endorsement is real, it will appear here with a name against it — and not before.
“Endorsement to be added.”
— Name, Title, Organisation
“Endorsement to be added.”
— Name, Title, Organisation
“Endorsement to be added.”
— Name, Title, Organisation
WAITLISTBe first to know
Be the first to know when the book publishes.
Add your name and we’ll email you the moment it’s out — with a link to buy, or to download your free copy if you’re a FADA family member.
AUTHORSAbout the authors
Pa Joof
Technologist and family advocate. Founder of Kindred Public Group Ltd and Making It Happen Now CIC. Father of Abdou, Jibreel, and Imran.
Dr Ancha Bala-Joof
NHS GP, GMC-registered, with a special interest in functional medicine and complex family systems. Mother of Abdou, Jibreel, and Imran.
Together, they are the founders of The Family and Disability Alliance.