The letter N has a few clear candidates for an alphabet series. It could have been N for Neurotypical, N for Normal, N for Neurodiverse, N for Neurodivergent. But, it’s none of these candidates for this blog. They are all good topics well worthy of attention, indeed, I have given them attention in the past in other blog posts. But today, in the spirit of autism acceptance and the promotion of the neurodiversity paradigm we have:
N is for Nothing About Us Without Us.
Parents make decisions on behalf of their children all the time. It’s a part of life. We even have governments making decisions on our behalf. They decide shall we go to war against this evil despot, for example, they decide how much taxation we should pay, how much certain services cost, what rebates might apply on things. The list goes on.
Primarily though when I think of making decisions on behalf of others, it is most often in the domain of parenting and children. And that makes sense, it is, of course, the role of all parents to make decisions in the best interest of their children, to promote growth, ensure safety and provide for their needs. There is no issue with this it is part of the human experience.
So then what is this whole nothing about us without us? As I have explained we do this as a matter, of course, don’t we. Well yes, we do. When, though, do people get to be self-determining. When, though, does a human person get to move into that realm of saying no, that’s not what I want from me, I reject that process and affirm this process.
In the eyes of the law in my country, that occurs when a person 18. At 18, I am considered an adult, given the right and privilege to vote in elections, the right to buy and consume alcohol and other such things.
But what if one is disabled?
In theory, the same rights apply, unfortunately, in practice it doesn’t. Parents still continue to decide for these disabled adults, departments of government, advocacy groups, everywhere are the rights of self-determination actively taken from disabled adults.
It’s not just the active removal of these rights of self-determination either, it’s far more insidious than that. It’s the propensity of the professional classes to make comment and policy moves without considering the voices of the disabled people they supposedly represent. It’s the reporting by the media about disabled issues without comment from disabled people. It’s the actions of so-called advocacy groups spending raised charity funds on programs and processes without consultation with the people they claim to assist.
It goes on and on.
Major autism organisations support a light it up blue campaign, to raise awareness for autism, yet what does this actually do to promote the well-being of actually autistic people? Autism walks are popular around the world, they raise money for autism organisations to apparently make our lives better.
Yet this is all done for us. And, it is all done without us.
Not only this but then in many cases these funds are then directed at the whim of a board or management committee. Autistic people are not consulted or in most cases even asked, how those funds would best benefit them. In many cases, these funds are funnelled into research that is not directed at better lives for autistic people but at finding the cause of autism, and the holy grail- a cure for autism.
Yet, autistic people around the world proclaim, I DON’T NEED OR WANT A CURE, and I DON’T CARE ABOUT THE CAUSE.
And anyway if you really want to know the cause, that’s easy, a sperm and an egg got together and created that human person who happens to be autistic. End of story. It doesn’t matter.
N is for nothing about us without us.
Please stop deciding for us.
Please start listening to us.
Please stop ignoring us.
Please stop silencing us.
N is for nothing about us without us.
Please start listening to us.
Please start valuing us.
Please start regarding our thoughts and feelings.
Please start amplifying our voices.
N is for nothing about us without us.
Just as an allistic person is upset at their voice, their decisions, their thoughts and their feelings being ignored, so too, are autistic people.
N is for nothing about us without us.
Because quite simply, we are human persons, just like you.
