I first encountered the terms "Autism Ally" and "Disability Ally" relatively recently. Where people who are not autistic/disabled use the term 'ally' to show that they are supportive of autistic/disabled people.
For some reason I didn't like the term. It felt unsettling. Like there was something slightly...wrong? - but I couldn't put my finger on it. So I kept quiet, figuring that at some point it would make sense.
Then in response to my "Is everyone a little bit autistic" blog post, an autistic person tweeted this:
Which made me think - why did I react so negatively to the same term before?
Then I realised.
When someone with a condition that you don't have calls you an ally - it's like them saying "Thank you, you have done something helpful, I feel respected, listened to, and supported by you."
But if I were to say "I am an autism ally" - there is no verification. No real world confirmation that my words and actions are genuinely supportive. Clearly I want to be an ally. But hand-on-heart well intended actions and words don't always equate to actually being an ally.
I know this, because I'm a wheelchair user and I often meet people wanting to show that they support me, accept me etc - who might consider themselves my allies. But very often, in reality, they aren't. They make a fuss when no fuss is needed, they barge past me to open doors I am perfectly capable of opening, they heap fawning praise on me for doing things that are totally normal (drinking a cup of tea, buying a T-shirt etc.), they tell me that they totally understand how terrible my life must be, or they get offended when I politely turn down an offer of assistance*. People react to me based on false assumptions and don't take the time to check whether those pre-conceived ideas are accurate or applicable. All of these interactions make my life harder - meaning I use precious energy fending off their advances instead of being given the freedom to get on with my life. If one of these people said to me they were a "disability ally" and would speak up for me, I would, quite frankly, feel moderately terrified about what misinformation they might be spreading - and how much more difficult they would make my life in the immediate future.
Their intention was to be an ally, but it came out wrong. They weren't my allies in reality. And they couldn't be my allies because they did not listen or take the time to find out what I needed before swanning in to my life, full of good intentions.
When someone claims to be speaking up or acting on my behalf, but actually aren't, and hand out misinformation instead, it's scary. Really scary.
The thought of doing this to someone else - stating that I speak on their behalf and then handing out misinformation, or stating that I support them and then doing really unhelpful things, is.....something I don't have words for, but something I really don't want to do EVER.
Now I know that I sometimes screw up with how to support/help other people with disabilities. We all do - and as I'm learning to be an ally, that's OK. Learners make mistakes, we learn from them, we do our best not to repeat that same mistake.
So I won't be saying "I am an autism ally" -because it may not be true - however much I want it to be true. Yes, I wrote a blog post that one person considered worthy of 'ally-ness' - but was my next action genuinely supportive too? The only people who can confirm or deny my ally-ship that are the people who's ally I am trying to be. Not me.
But what I can say is that I'm learning to be an ally. Sometimes I may mess up. Get things wrong. But then I will listen and do my best to learn and not repeat the same mistake again.
And I intend to keep learning for the rest of my life, because I think I can be far more supportive to others by constantly learning how to be a better ally, than I will be if I consider myself to have achieved 'ally-ship' already, and stop learning.
(*Casually offering support if I look like I'm struggling is great - but refusing to listen to a 'no thank you' or trying to insist I accept help that I don't need is not helpful, nor is it respectful).
Note: I know not everyone will share this view, and that is fine - everyone is free to use the terms they feel appropriate. This blog is simply written from my perspective here and now - and it has allowed me to process and understand why I was so uncomfortable with the 'ally' concept.