On Wednesday June 3, a group of seven people with FASD and some of their caregivers gathered in Pōneke, Wellington to take part in an advocacy planning day. The attendees have connections to FASD-CAN through our Tītoki camps and Pizza Clubs, as well as via various support groups.

The hui was funded by Whaikaha, the Ministry of Disabled People, with a view to developing a formal roadmap for advocacy and leadership for people with FASD – recognising that their voices have been under-represented in policy decisions to date. 

The group was facilitated through a planning process which included talks on Whaikaha, the UNCRPD and a discussion with Mike Gourley, QSM. Mike is a broadcaster, founder, and advocate, and has been an influential contributor to rights based legislation in Aotearoa NZ.

Mike spoke about accepting his own disability and that of others; the long path to changing the landscape of disability rights; the value of forming an organisation, and what it takes to be a strong advocate – words which resonated strongly with those attending.

The group heard from two of the people with FASD around their experiences of advocacy, and had opportunities to discuss how they too can advocate for themselves and others with FASD. There were also discussions were about a shared vision, what they wanted people to know, organisational structure of a group, and what would be needed to develop a strong advocacy voice.

The session was aspirational as well as practical, and the group formulated some great ideas. The mahi produced will inform a future advocacy rōpū.

A quote from one of the caregivers:

"It was good to work together to brainstorm ideas on how an FASD advocacy group might come together in a more formal way. To amplify the voice of individuals with FASD is essential, but we need to do it in such a way that is safe and supportive, and the formalisation of an advocacy group will ensure this can happen.”

And from a couple of the self-advocacy team:

"It was extraordinary. The whole thing. Understanding we go through with FASD... it's hard. The next generation’s coming through, got to help them as much as I can." Mark

"So thankful for the opportunity to speak on my own behalf about having FASD. Listen and share your experience – it helps others in the long run." Shanaia

More to come!