Autistic advocacy: The reality of lifting up a community

Many of us as community advocates have dedicated our lives to defending the marginalised and uplifting those that society has tried to hold down. For some of us, this has become our professional job. For others, it is something done on a voluntary basis. Both are as valid as each other. We spend enormous effort on our cause, but in truth, we rarely make space for ourselves. To put it another way; who advocates for the advocates?

Autistic people engaging in community advocacy and activism are just as disabled as the rest of our community. We are not some mythical entities that exist outside of the reality of Autistic experience. We are victimised, we are oppressed, we are invalidated. Many of us have very public facing profiles, and sometimes people forget our right to privacy. It can be exhausting. We have to fight not just for our community but also police ourselves. People online tend to expect perfection. Ironic, given that neurodivesity is almost explicit in its denial of perfection.

Beyond the pressures of being in the public eye, there is the reality of facing the trauma that our community experiences. Many of us fight daily on an individual and community level against the abuse of our community. My first thought, of course, is the Spectrum 10k campaign. Myself and the rest of the Boycott team have shed literal tears trying to hold ourselves together and fight. Another example is the Creating Autistic Suffering series that I co-author with Tanya Adkin. The content of those articles is not hypothetical. It is based on things we have witnessed in our professional roles.

Time and again, we face some of the worst that society gives to neurodivergent people.

I do this work because I love the Autistic community, and I live my work; but I am a human being. There are times when I want to scream and cry and pack it all in. There are times when I feel like an imposter. There are times when I wonder how sustainable it is to get up each day wondering what ableist vitriol I will witness today. I love my work, but it can be draining in a way that can’t be described by any metric I am aware of.

So, why write this? No, not because I can’t cope with it. This work is my calling, and despite the negatives, I wake each day knowing that today, I have the power to make a positive difference for someone. I write this because I want all Autistic advocates (regardless of the nature of that advocacy) to know that I see them. I see you standing up and fighting each and every day. I see you do your best to make sure that the world we leave behind is better than the one we were born into.

Each of us has the power to make change for the better. Our mere existence alters the world in irreversible ways. However, I want advocates everywhere to know that it’s okay to stand back and recuperate.

The reason a choir can sing impossibly long notes is because individual members can breathe while the rest keep singing. In case no one has told you recently; take a breath, the rest of us can hold the note for you.