The Joy of Knowing Pete

Hazel Morgan’s son, Pete, died shortly before his nineteenth birthday. He had Down syndrome and profound and multiple learning disabilities. In her latest book, Hazel reflects on his life and legacy, the challenges and treasures.

I count the 18 years spent with Pete among the richest of my life. He achieved so much, creating joy in the lives of people around him. I wanted this book to show the positive influence of a young man whose strength and joy shone, unaided by words.

Back in 1990, I wrote a book called ‘Through Peter’s Eyes’. This was a way to celebrate his childhood years and all that we shared – picnics, friendships, music, the highs and the lows.

Pete’s positive influence didn’t fade away after his childhood; it felt important to reflect on his teenage years too. That’s what this memoir, ‘The Joy of Knowing Pete: Much was said, yet no words spoken’, aims to do. This is Pete’s story written many years later.

I’ve never stopped asking questions

As Pete grew up and his needs changed, the world around him was also changing. We were coming out of a time of segregation and attitudes towards people with disabilities were gradually improving.

When he was still very young, in the late 1970s, he needed heart surgery. I was told that here were some surgeons who wouldn’t perform such operations on children who have Down syndrome – they didn’t see their lives as being of equal value.

I was shocked to the core. It made me ask questions. I also wanted to learn everything about the new support options opening up for people like my son. That’s when I started writing.

Later on, we started to ask different questions. What was his future going to look like? What support was available? So, in this next book I reflect on those issues. I look at the societal attitudes and policies affecting people with learning disabilities, both then and now.

We all have so much to learn

At the heart of both books is a prompt to consider how we can give people who communicate differently the opportunity to be listened to. They can and should be involved in conversations about their needs and desires.

I learned so much from Pete during his brief life. Society stands to gain so much by becoming more inclusive. My books certainly hint at the need for greater policy commitment to people with learning disabilities.

I also want people to know that, actually, if you have a son or daughter like Pete, it’s a positive thing. Every person should be valued in their own way, for their differences not despite them.

It’s a love letter to Pete, but also to memory. I hope that many families will relate to this book. I’d to love his story to reach parents, policy makers and practitioners in education, health and social care.