Beyond Words Collective was born out of a life that changed everything we thought we knew about words, and love, and what it means to be heard.

Our sister came into our family given six weeks to live. She was labelled, before she’d even had the chance to prove anyone wrong, as “a floppy baby with no future.” Our family made her a promise that day: that we would love and protect her, no matter how hard, how short, or how long her life turned out to be.

She spent the next 39 years proving every label wrong.

She couldn’t hold her head up as a baby. She had no words, not in the way most people mean it. But anyone who knew her knew she never needed them. She let you know exactly how she felt about you, through a look, or a laugh that came from nowhere and stopped a room. She went to college, performed on stage, travelled, lived in her own home with support, and worked her way through more mischief and more tinsel than any of us could keep up with … loved fiercely… and was loved just as fiercely back.

Our sister taught us that a voice doesn’t have to be loud, or even spoken, to matter. And she taught us something harder, too: that the world doesn’t always make space to listen for it. As a family we spent years learning to interpret, advocate, and fight — gently, and not so gently — for her to be seen for who she really was, in rooms and systems that were often quick to see the label and slow to see her.

When we lost our sister suddenly, we were left with a grief that, true to form, no words could hold. But we were also left with everything she’d given us: a fierce belief that everyone has something to say, if the people around them are willing to listen for it. That’s what “beyond words” means to us — not the absence of a voice, but everything that gets communicated in spite of, and beyond, the words we’re given.

So my sister and I built Beyond Words Collective in our youngest sister’s memory. Through our knowledge, skills and experience, we’ve started with a free training programme, NAVIGATE, to help other parents and carers build the skills and confidence to be heard — in schools, in meetings, in all the rooms where families like ours have had to fight to be understood. It’s our way of making sure other families don’t have to learn everything the hard way, the way we did – and to know they are not alone.

Our sister never raised her voice to make an impact. She didn’t have to. We hope, in her name, to help every family we work with find theirs.

Keren and Cola

Directors

Beyond Words Collective CIC

In loving memory.