Recently I’ve been reading a very interesting book, called ‘Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum’. Edited by Stephen Shore, it’s a collection of essays on advocacy by autistic writers like Stephen himself, Roger Meyer and Lianne Holliday Willey. It’s well worth a read, if you can get hold of it. However it was one essay in particular, entitled ‘Building Alliances: Community Identity and the Role of Allies in Autistic Self-Advocacy’, by Phil Schwarz, which really got me thinking. Most especially, one sentence towards the end, where he says –
“There is one thing that is really important about being an effective [non-autistic] ally… That is the essential and critical quality of a true ally that an ally does not serve as an effective ally by implementing his or her own agenda or ideas about what people on the spectrum need. Rather, a true ally implements the agenda of the people to whom they are an ally.” (his emphasis)
Let me repeat that – a true ally implements the agenda of the people to whom they are an ally. This means that any non-autistic individual, or autism group or organisation who tries to impose their agenda on us, is not a true ally. Any group or individual or organisation which purports to ‘represent’ or ‘care’ for us, but which does not listen to us or consult us, which (literally or metaphorically) pats us on the head and says (directly or indirectly) “we don’t need your input, we know what is best for you”, is not a true ally. Any autism organisation which will not allow us a voice or membership on their boards or committees or panels, or which lets us in but then tokenises or sidelines us, or in any other way renders us impotent or silent, is not our true ally. Any individual who smiles patronisingly while we speak and then goes on talking as if we hadn’t spoken at all, is not our true ally.
I’m sure we can all think of prime examples of all of these. The question then becomes, what do we do about it? The above essay gives some really good ideas about how to build relationships with those who are our true allies, and it’s well worth a read. My concern right now though is, what do we do about the organisations who have already proved they are not our true allies?
It seems to me there are several options. We can ignore them, and/or work with other organisations who are more amenable to the autistic point of view. We can try to ‘take them over’, and convert them into true allies. We can pressure them into changing, from both inside and outside. We can build our own organisations, which will work to ultimately change public opinion so that the worst of these organisations (the ones we are unlikely ever to win over) will become impotent and sidelined themselves.
Which path we choose, will depend on each autistic individual or group, their abilities and inclinations, the situation from country to country (because this is a world-wide phenomenon), and even region to region, or year to year. (Changes in leadership may render an organisation more approachable, for instance.) We all have the right to choose which path we think is most likely to work for us as individuals and as a group. I would ideally like to see all of these tactics taken by different autistics and/or autistic groups, as a multiple approach/attack is likely to succeed better than a single one. We can and must all work in our different ways, to achieve what is really a single aim – that of the implementation of OUR agenda, and the full realisation of our human rights. We still have a very, very long way to go before that is achieved, and whatever path we take, it has to lead to the same place in the end.