
Siblings tells what it is like to grow up with a brother or sister with a disability or illness. A brave account of Kate Strohm’s own journey as a sibling, the book provides other siblings with strategies to make sense of their experiences.
This year marks twenty years since the publication of Siblings. In a special guest post, Kate reflects on the journey that she’s been on in the years since the book was released.
Read more below.
This year is the 20th anniversary of Wakefield Press publishing my book, Siblings. And what a full and rewarding 20 years it has been.
This journey started from a place of huge anxiety about whether I should even tell my story and that of others, to one of immense gratitude and satisfaction. It’s a very common story, one that revolves around having a ‘voice’ and through that allowing not only self-growth but also reflection and resonance for others in far reaching places. The book was published in the UK, US and even translated into Korean, a mystery to this day!

I had grown up in a very loving family, but one that was stressed managing the additional needs of my older sister, who had cerebral palsy. I had to be the ‘good girl’ and not add to my parents’ grief and anxiety. But inside I was dealing with so many confusing thoughts and feelings. It was all too much for a little girl; the feelings too big for me to understand or manage. It came home to roost in my teen years when I went through intense anxiety related to the judgement of others. My mental health issues continued through my 20s and 30s and, only when I reached my early 40s, did I have the courage to try further counselling to understand my reactions and fears, after various unsuccessful interventions when younger.
That process started the seed for a book, along with seeing twin girls at my daughters’ school, one of whom had a disability. I wanted to assist those around them to understand the experience of the ‘other’ child.
I wrote Siblings originally to record some of my own experiences as a sibling to someone with a disability as well as sharing stories of other siblings. But of course, the old ‘who would want to read my story’ reared its head more than once. I had no idea how it would resonate with others and lead me along a totally unseen path. It even had a revised edition published in 2014. In the foreword to the revised edition, I wrote,
‘In 2002, in the month before my book was first published in Australia, I read an article in which the author Jonathan Safran Foer said,
In my case, I’ve always felt that there are things on the inside of me that I wanted to be on the outside of me. But a lot of these stews of emotion have no function other than to make us nervous or occasionally happy. But when you write a book, you can do something useful with it. You can get it on the outside of you. And, if you publish the book, you can enter into a conversation with the world.
‘For me these words rang true, especially in terms of getting the “stews of emotion” outside. But I had no idea that the “conversation with the world” would be so animated. With the internet and email shrinking the world to my home study, I have been exhilarated to connect with so many families and professionals, from near and far. I had felt some anxiety about releasing the book, wondering what people would think, and whether they would judge me badly for having been so honest. To the contrary I heard from many who connected so strongly with the words that they thought I had written their story. One man said, “I feel such a kindred spirit with you and the others that you quote. It was such an enormous feeling of relief… I never (even today) had permission to be angry with my brother or to stick up for myself. There is lots and lots of pain and it takes a very long time to understand. I’m emailing to say thank you for touching my heart and for helping me to make tremendous progress in my grieving process.”‘
That conversation continues still.
One of the first of these conversations was with a 14-year-old sister of a boy with Down Syndrome, who insisted on attending a parent workshop in the US where I presented on supporting siblings. When the workshop hosts asked me if she could attend, I was against the idea, thinking it wouldn’t be appropriate for a teen, but she insisted. And then, on the night, she sidled up to me with a copy of my book that she had marked, underlined, highlighted, and scribbled on – no better feeling for an author than such commitment and resonance. And we remain in touch many years later.
And then the psychologist in Milan who brought me to Italy, the first time in 2006, to present on sibling issues and support. I went back to Italy four times and became very close to his whole family, especially when I broke my kneecap when visiting his family in the mountains out of Milan. We caught up again just recently … such a wonderful connection!
At the same time as starting the book, on a sabbatical trip with my husband, I started to think about setting up an organisation for siblings in Australia, based on those I saw in the US. I was lucky to have Dr Jon Jureidini, who was Head of the Department of Psychological Medicine at the Women’s and Children’s Hospital in Adelaide, support the idea and assist me in setting up Siblings Australia. He also put me in touch with Wakefield Press and his wife Julia was one of the editors on the second edition of the book. Quite the family affair.
The organisation (Siblings Australia) is nearing its 24th anniversary. After much blood, sweat and tears, and despite many years of little or no funding, it has developed a national and international reputation for its work with families and professionals. Like the book, it has led me to some wonderful conversations with the world and ongoing relationships. In 2020, we received a 3-year national government grant to expand our work, although ongoing support and sustainability is always an issue. And as we head to this 24-year milestone, I am starting the process of pulling back and allowing others to steer the ship. Will be an interesting process of partial letting go.
So, especially as I mark those 20 years of my little book being published, it is interesting to reflect and wonder on the state of disability support in Australia.
Still, siblings are largely overlooked, despite having one of the longest relationships of any with a person with disability. When people with disability are still facing social exclusion, I do hope that the importance of this relationship will eventually be better understood. When supported, not only do siblings fare better, but they can also play a huge role in ensuring the lifelong wellbeing, inclusion and safety of a person with disability.
Kate Strohm, after careers in hospital science, counselling, health education and journalism, became the CEO of Siblings Australia, an organisation that provides resources and support for siblings of children and adults with disability or illness, as well as for their families and service providers. She grew up as a sibling herself to a sister with cerebral palsy.
