Meet and greet
With a degree in sociology and having lived and worked in the UK and Eastern Europe, Andrea Lee knows a thing or two about communicating across cultures. So when her second child was diagnosed with a rare genetic condition—and the common language she’d shared with other parents was suddenly out of the window—Andrea was quick in her quest to connect with others who understood. The first port of call? Parent to Parent.
Sixteen years on—and now President of the Parent to Parent Board and Executive Director of Fragile X NZ—Andrea is equally agile in her drive to bring a greater understanding of lives being lived outside the dominant culture into the mainstream. If ever anyone had two sets of hands and could be in two places at once, it’s Andrea.
Can you tell us you’re a parent without telling us you’re a parent?
I seem to have developed the skill to do multiple things simultaneously while being constantly interrupted. Most parents will probably relate to that!
My priorities have changed, too. Much of my thinking and doing is now focused on my family and their wellbeing—and what that means for each family member, which is constantly changing.
Parents of disabled children often end up having these patchwork careers and lives. Holding everything together, spinning multiple plates to look after the family’s wellbeing; always having to be on call to navigate all sorts of systems, processes and things that come up.
Tell us your age without telling us your age (and, to make it extra tricky, you must use the number 40).
When I turned 40, Toy Story 3 had just come out, and I know this interesting fact because my son was a huge fan of Toy Story and Woody.
X 40th Celebration multiplication X
Tell us about 4 Parent to Parent initiatives you’re excited about seeing happen in the next 4 years.
- Connecting families everywhere to the opportunities presented by the changes happening in the disability sector, in particular, the EGL (Enabling Good Lives) national rollout.
- Finding more ways to share stories of families in our network who are living a good life—because this connects and supports all families in finding pathways for positive change. The identification of a shared journey is crucial. Being seen and understood starts with finding your tribe: people you know will ‘get it.’
- Continuing to amplify the voices of parents and whānau to influence innovation in how the government offers disability services, particularly around family wellbeing. We know that if parents and whānau are supported and doing well, the outcomes for disabled children will be better. The parents and whānau are the ones that carry the hopes and dreams of the children and we want all families, everywhere, to not only survive but to thrive. And dream big.
- More events and training sessions that connect and inform parents and whānau and support our wonderful, committed and talented Parent to Parent staff.
In x10 words, could you explain what you love most about Parent to Parent?
As families, we connect and share and are not alone.
Tell us about 4 people who have inspired you to do the work you do.
- First, it’s my son, because I wouldn’t be on this journey if it weren’t for him. I have huge admiration for the person he is, not least his tenacity: how he is so positive and joyful and embraces life. I’ve learned so much from his determination to connect with people; even when he encounters challenges and barriers, he looks for ways around them. He often connects through humour. I’m a real advocate of humour for getting through adversity: if you share a laugh with someone, you’ve made a connection.
- Next would be Maya Angelou. She has such compassion and humility in her wisdom, having also faced many barriers. I love this quote from her, ‘Do the best you can until you know better, then when you know better, do better’ because it acknowledges the path of growth we’re on in our lives. It has compassion, but it’s also aspirational—we can all do better all the time, but when you look back and think, ‘Oh no, I could have done that differently,’ it’s reassuring to remember you did the best you could at the time.
- Anyone who works for social justice and positive change inspires me, such as Sonja Davies, a fellow Nelsonian, and so many others. People who do it in creative and innovative ways that embody our humanity are particularly compelling—comedians who push the boundaries on social change, for example. Stella Young challenged perceptions around disability in a humorous, powerful way. Hannah Gatsby and Alice Sneddon tackle social justice issues with humour and have a lightness of touch that gets to the core of what it is to be human.
- The fourth person would be Lorna Sullivan, one of the first thought leaders in the disability space I heard speak after my son’s diagnosis. She challenged my thinking and led me down a new path of exploring possibilities and ways of being for our family. Lorna is recognised internationally as a disability leader and she’s been a real inspiration for me.
Finally, please give us a x10-second elevator pitch about where you see Parent to Parent in another 40 years?
In 40 years, I hope that communities will be fully inclusive and welcoming of all people; that the human rights of disabled people will be fully met; and that the life outcomes and measures for disabled people will be representative of the general population because currently, they fall well below. I also hope that Parent to Parent will be a household name and will continue to be a grassroots network of parents and whānau connecting to learn together. That would be great, wouldn’t it?