Last year I was sent this wonderful Ted Talk to listen to. I wasn’t sure of its relevance at first, but it soon became clear.
Here it is, well worth a watch: Ernesto Sirolli: Want to help someone? Shut up and listen
It got me thinking about so many of my problems, and they are all based in connections. They are all based between me and others.
The Ted Talk is about being an NGO in Africa, not about Autism or disability, but the comparisons are stark.
The way that our Western eyes viewed Africa as either Patronising or Paternalistic… that’s how people view disabilities too.
The way those who want to help wander around trying to come up with solutions, without asking the communities they are trying to help… that’s how people have traditionally approached helping people with Autism.
Over and over again what Ernesto says strikes a chord with me; if people do not wish to be helped, leave them alone. Many Autistics are successful and happy and loathe the patronising idea that they need anything from anyone. Leave them alone.
I once approached a Government representative to ask about why there wasn’t the Mental Health Care Provision needed for Autistics in my area. I had looked into what was available and there was no care specifically suitable for those with Autism unless they were in extreme crisis.
The response I got was Paternalistic. It didn’t address the issues I was raising, it focused on me and what I needed at that time. I was confused. I didn’t need any help. I was fine. I wasn’t asking for me, but the assumption had been made. I was Autistic and therefore needed help, rather than I was Autistic and asking where the structure of support was for my community.
It left me feeling defensive and wrong-footed. As though I was asking for help for me that I didn’t need. I stopped communicating. Why? Because the communication was so draining that I was already spending time away from my family just to interact over a few emails. I didn’t want to waste more energy somewhere I was being belittled. I didn’t have it to waste.
I feel guilt for giving up. I shouldn’t. I have a Social Communication issue. That’s what Autism is. What I need to do to put the structures in my community in place, is exactly the thing that disables me the most. It’s a wall I can’t climb. I need help. But when I ask, people assume I need something else. They don’t listen.
We have no end of helpers who want to cure autism and remove what we contribute to the world, where are all the people listening? I know you’re there. You’re every neurotypical reading this. You’re everyone who wants the world to be a better place. You’re everyone who values neurodiversity.
I hear Autistic Artists stating time and time again their struggles with grant applications and the social interactions you need to perform to become known. Being an Artist isn’t about making art. It’s about interacting.
I lament the interactions I need to do to get myself published. It’s so much easier to write something, play with it a while and then write something else. How would I begin to do more? All that interacting will drain the life from me. When will I have that life to spare?
I write performance-poetry and force it on my nearest and dearest. How would I interact enough to reach further?
What if someone were able to market all the products of my necessary hobbies as they appeared? What if those boxes of whatnots and whatchamacallits saw the light of day?
What if those who needed an analytical mind could be matched with a person who has one, but doesn’t have the social abilities to discuss last night’s soap opera or seem friendly in a job interview?
We need connections.
As Ernesto says, people can’t do these things alone, they need networks. No one person can do everything. Not no one autistic; no one person. The difference is that Autistics are likely to have fewer connections than average people, and those connections may be more likely to have the same problems.
We have had our ignorant NGO-equivalents come in and stomp around like a herd of Tomato-drunk hippopotami. Can we now have the thoughtful people turn up and listen? Can we have a revolution in support?
I am trying to be successful as an island. I don’t want to move to the mainland, that would never suit me, but perhaps we could group a few islands together? Perhaps those who want to help can build some bridges between us all? With a thoroughfare to the mainland for essential supplies?
No more patronising. No more paternalism. Instead let’s build structures that last. Structures that fit the landscape that is there; that fit the mountains and valleys, the peaks and troughs of our abilities.
I’ve often joked with fellow Autistics that what we really all need is a Personal Assistant; someone to do all the admin in life, answer the phones, make all the plans, get us to the right place at the right time with all the right information and preparation.
But deep down i know it’s not really a joke. These are the things that make me deficient. These are the things that make humaning (it’s a word, from the verb ‘to human’) so hard at times.
Disability needs to be viewed through a different lens. We are not just here to exist, we contribute, we have so much to offer. Not just as mathematicians or engineers, but as artists, poets, dancers, musicians, writers, comedians: all those realms that require skills of social interaction as well as talent. We are ready and waiting, are you ready to listen? Are you ready to find other ways to include us?
As Ernesto says so eloquently, “You shut up, you never arrive in a community with any ideas… we become friends and we find out what that person wants to do… and then we help them go and find the knowledge, because nobody in the world can succeed alone.”
It is so hard to shut up. It’s so hard to put aside preconceived ideas. So very hard to sit on your hands and stay silent, but it’s how you help. It’s how you understand.
People need help to achieve. Those of us in communities with additional barriers really need help that doesn’t come with preconceptions.
It will spread. We will see those like us out there doing it, we will look for the network behind it, we will find that a structure exists, and all these amazing people, lost in isolation, will be revealed.
And the world will be made more beautiful by it.