The Youth Advisory Group (YAG) is a new initiative that provides very special siblings between the ages of 14 to 25 a platform to be heard. The group is made up of nine enthusiastic, motivated, and inspiring young adult and adolescent siblings eager to express their thoughts and ideas in bold, creative ways.
YAG member Liz, recently spoke at the Australian Paediatric Palliative Care Conference (APPCC) to teach healthcare professionals about the importance of the Youth Advisory Group. Her speech is shared below.
Could you give me your name, age, and current level of education?
Liz, 21 years old, studying a Diploma of Community Services.
What is a fun fact about yourself?
I can play over 5 instruments but my main two are Bassoon and Flute.
If you feel safe doing so, could you share a bit about your sibling and their story?
My older sister Jennifer had Spastic Quadriplegia Cerebral Palsy, she passed away July last year at 21.
Liz’s speech at the APPCC
Hi. I’m Liz. Youth Advisory Group has been my way to reconnect with Very Special Kids and has become my pathway into my self-reflective epiphany – involving my values, passions, ability and worth.
I was first part of the sibling program run by Very Special Kids at the early age of 11. My connection and reason with involvement of Very Special Kids was my older sister, Jennifer. Jennifer was two years older than me, so unfortunately that meant when she turned 18 in 2017, she aged out of the program. So did I, even though I was 16. However, I was able to sneak into one more adolescent camp. To be honest, I struggled to find resources and support in relation to sibling services, but I just carried on.
When my sister passed away last year, I was lost. I struggled greatly to find services or literature that were for bereaved siblings at a similar age to me. At the time I was 20. I will go more into depth on this in a second.
After weeks and months of searching, I emailed Very Special Kids in desperation, seeing if there was any possibility for me to get involved with the sibling program again, as I didn’t know what to do. The Youth Advisory Group was mentioned, and I’m so thankful to this day.
Something else I didn’t expect would come out of this group and my subsequent deep dive, is my changing career interest. I’m currently at TAFE studying a diploma in community services and have the intention of going into the field of general disability advocacy. A part of me, deep down, has always wanted to be an advocate for siblings, but there were no examples or role models, which led me to believe subconsciously that it wasn’t worth going into. I believed there was no focus within society so I wouldn’t get far with it.
I honestly think the YAG, in a way, has shown me the vast difference of having resources and support, as well as space in the market for sibling advocacy. The inequality of sibling representation and resources has become a big passion of mine. A clear example of one that helped drive this passion initially was the struggle I had finding poetry about sibling bereavement. I read 20 poetry books that I bought for the sole reason, but maybe around three of maybe 100 poems in each book I could relate to and relate back to sibling grief and loss.
The group has given me inspiration and motivation to dive deeply into this passion and explore it and begin to take action. I have started drafting a book on the inequality of literature related to bereaved siblings. This book has been a combination of poems, quotes, prompt journal and prompt poem questions, all relating to sibling bereavement as an adolescent and young adult sibling aged audience. Being able to speak here at this conference is an example of an opportunity that I have gained from YAG, which is my first official step in the door of speaking about sibling advocacy at a bigger level.
I am so proud to be a part of the Youth Advisory Group. It’s a great concept with great members and facilitators. Being able to do this as well as being able to have a connection with like-minded peers is extremely helpful and I value it as a good balance of the two. At the end of the day, I know it’s what my sister would want me to be doing and would be proud of me for doing so.