‘Nothing about us without us’ except….

Leeanne Marshall "‘Nothing about us without us’ except…." from oneautisticperson

“This is a unique situation” “I am in charge and I am autistic so that is not needed” “That only applies in certain situations … this is not one of them” “This is a different kind of decision”

These are all statements or similar to statements I have heard recently from people who have authority over autistic individuals in various services. The people in authority state their agreement to the Autistic Self-Advocacy Network tag line ‘nothing about us without us’ but come up with an excuse as to why they do not have to follow that statement in specific situations. Some of these people will even tell other people in authority over autistic individuals that they must listen to their clients. I am sure some even think that they do listen to autistic people and value what we have to say because they do listen ….. in certain situations ….. when the person in authority thinks it is necessary or, to be blunt, when it suits the person in authority to listen.

I have reasons for not wanting to go into detail about the situation that happened recently. That said, the reason I am writing this for autistics speaking day 2015 is that not being listened to when accessing disability services is sadly, very frequent. A few years ago I was part of a social group for autistic women. I hope I am never again part of a group where the person in charge has chosen bowling for an activity and only 4 people actually participated in bowling while the rest of sat and talked at a table because we did not want to go bowling (and of those 4 people, only 2 were clients). I hope I am never again part of a group where we are told we can make our owns rules, because we should have some ownership of the group, but our rules will only apply to certain people and will not be considered to be as important as rules set by the person in charge. I hope I am never again in a social group that ends up being suspended because some of the clients felt so angry about not being listened to that they walked out of the group one session and meetings the following few weeks. That said, I do not regret walking out and would do it again if faced with the same scenario …. But this could all have been prevented if we were listened to and had a say in decisions that affected us.

When autistic people are only given a voice on some issues and decisions that affect us when accessing a service, it means that ‘nothing about us, without us’ is not being fully adhered to. It is a token voice and it gives the person in authority too much power. The person in authority comes with his/her own biases of what they think the service should be like and how the service should be presented (in the case above, the person in authority seemed to enjoy bowling and selected bowling as an activity regardless of the enjoyment of the clients). The person in authority needs to remember that the service is there for autistic clients and the clients should have a say about the service. That does not mean that every suggestion made by the clients should be followed (each autistic person is different after all, and so each client will have different ideas on what the service should be like) but it does mean the clients should always be consulted and have the opportunity to speak or communicate their thoughts in other ways. It also means the person in authority should take time to seriously think about the suggestions being made and not just instantly dismiss them.

The bottom line is when it comes the motto ‘nothing about us, without us’ it needs to be more than just words. If you are reading this and you in charge of a service for autistic individuals then you should be ensuring your clients involved in that service get a say in every decision that affects them. If you find yourself even now coming up with reasons why that can’t happen then I think you are actually making excuses and I challenge you to change your attitude. This does not mean that you have to go along with every suggestion made by the autistic people you run the service for, there may be reasons why you can not go along with these suggestions but you should listen and be able to thoroughly explain your reasons if you do not follow suggestions. ‘Nothing about us, without us’ no exceptions.