Are we including the most marginalised folk in our advocacy?

I recently wrote a blog post sharing my observations and personal feelings about being excluded from advocacy spaces within the ND community. What I didn’t realise is that I was doing that very thing within my own post.

Last week, we saw the autistic Barbie launched worldwide. A first of its kind. A doll that represents some people’s experience of being autistic. It was exciting to see. What was not exciting was the deluge of comments flooding the posts celebrating this win for autistic people, which focused on the inclusions that Mattel decided (with consultation of autistic people) to incorporate within the autistic doll.

Autistic folk seemed upset that the autistic Barbie was holding an AAC device, declaring this didn’t represent their experience of being autistic. I was shocked at the lack of understanding that using AAC was, in fact, what many autistic folks expereince, and this led me to reflect on where I had done this exact thing in my own advocacy. Leaving out, excluding and ostracising the most vulnerable population of the autistic community. 

The move of the autistic community to prefer autistic professionals' opinions started with preferring late-identified autistic voices in advocacy. For the past few years, us late identified autistic folk have been dominating advocacy spaces, leaving little room for non-speaking autistic people or high-support needs autistic people to share their lived experience of being autistic in a world that further stigmatises and dismisses their lives. We have contributed to this silencing of them.

The release of autistic Barbie is a great example of this. Why can’t the autistic Barbie represent the most marginalised autistic people who need the most support and acceptance from society?

The same applies to racialised autistic folk. The decision to make autistic Barbie black highlights another marginalised autistic population that deserves to be represented in society and within the autistic community. 

Moving away from one group of people representing the whole vast, different, beautiful autistic community is a move in the right direction. Including all voices and forms of communication, regardless of qualifications, employment status, or abilities, is truly valuing lived experience. It’s what being neuroaffirming is all about - honouring people's individual lived experiences, even if they differ from yours, and giving them a seat at the table to share their personal story.