A conversation I had online the other day got me thinking about motivation: why do we do what we do? And does someone’s good work eclipse a less than pure motivation? I am someone who does a lot of work in the community and, while much of the time I am motivated by altruism and the wish to make a difference (i think!), sometimes I am motivated by a wish for approval or recognition. This bothers me. I have found myself on occasion thinking I would be a better fit for a presentation than the person who was asked to do it or getting excited when my face is used to promote something also featuring other people. I actually like recognition and find it energises me. However after considerable soul-searching I have arrived at the conclusion that my approach is OK. Well OK conditional on me not promoting myself ahead of others, getting jealous of others or only doing things because they have a recognition element attached.
I think I am doing reasonably well in this area, with some need for improvement. I’m not a saint! I actually think my liking of recognition can have a positive impact on my work reaching and hopefully helping more people. This is because when I do something helpful and get acknowledged with a thank you then it encourages me to do more of the same. I imagine if, when every time i did something I received harsh criticism or even indifference, it would discourage me from continuing to do what I do!
Enough about me and my moral dilemmas though. What about others? I think every variant of motivation is exhibited in the autism world. Some people have what I consider an actively negative motivation – promoting damaging ‘therapies’ and selling snake-oil ‘cures’. Preying on vulnerable families, kids and parents in order to earn a buck. Then there are people whose only reason for being involved in the autism sphere seems to be to make money. Of course we live in a capitalist country and so this is OK and legal but I find it hard to engage with people for whom my closely-held Autistic identity is seen only as a means for profit. Then there are people who think they are helping but, to my mind at least, probably aren’t. Then there are those who want to make a difference for a variety of reasons – autistic advocates, non-autistic parents, partners and other sorts of allies, academics and researchers, businesses and mangers employing autistic people and peak organisations. Each of these groups – and the individuals within them – will have different motivations.
In my own life, I sometimes come up against people who think they are doing positive things but who I strongly disagree with and have grave concerns that what they are doing is actually harmful to autistic people. An example would be those promoting ‘therapies’ based on forcing autistic kids to seem less autistic, e.g. autism conversion therapies. People doing this – as practitioners or parents sending their kids off to this untherapeutic ‘therapy’ – often think that they are doing the right thing. This feeling is often a genuine thing for them – they believe they are doing right, even if chances are they are not. Imagine someone saying to you that your motivations are wrong? I find it often takes time for people in this situation to come around – if they do. When I argue against those people I usually depersonalise it and argue about the ideas. It is unlikely to change their thinking but will enable me to have a conversation that others may see and it plants a seed in their mind – hopefully! Because of my past experiences I am a very patient person. Given how awful and unethical I was in the past and that I changed, I don’t ever want to write someone off straight away. I like to imagine that we are all on a journey at different points and I can maybe influence people through my experiences to help them get a bit further along on their own journey. Of course some people have intentionally negative motivations and there is little point engaging them in conversation. If Andrew Wakefield wanted to engage me in conversation, for example, I would tell him to go away (probably not using those words!!)
I think most people in our community are motivated by wanting to genuinely help autistic people to navigate life better but not everyone is on the same page about how to do that. My framework for this sort of things is:
- Autistic people and our thoughts, experiences and needs need to be at the centre of every act and decision
- Autistic people need to be involved in any decision-making on anything which impacts us
- Anything which tries to turn us into something we are not (e.g. conversion therapies) is not good and not OK
- Outcomes need to benefit autistic people
- If autistic people are involved in a for profit activity or process they need to be paid accordingly
- Within advocacy, some ego can be a positive element driving people to do things they otherwise wouldn’t but it needs to take a back seat to altruism, respect and the need to make change.