Neurodivergence

It Ain’t Our Party!

If I just seemed to rant at my #NeuroDivergent friends to include parents of #neurodivergent children in their movement, well, I won’t apologize. But one thing I hope you will take the time to learn about me is I believe in FAIRNESS.

So to be fair…I want to turn the tables now and talk to my parent friends…

I want you to imagine…

  • You go to your doctor to discuss contraception and he turns to your partner and asks, ‘So how can I help YOU today?’
  • At work, your boss is constantly talking to all your colleagues about your performance…as if you are not even in the room?
  • At a party, you are invisible…no one sees or hears you.
  • Someone appears on your doorstep one morning, they tell you what to wear, eat, go and do…without even consulting you. Because they know best.

Yes, I suppose we have all felt those things a tiny bit. Childhood in our society has lots in common with that. But imagine that was ALL you knew.

Marginalized!

For all your life.

There is a reason that the #NeuroDiversity is a civil rights issue. And I believe that we as parents have a lot to learn from the American civil right movement in the 1950s, 60s and early 70s.

You see there were loads of whites involved in that movement. In fact, Jewish people in particular supported it. They too understood what it meant to be marginalized and discriminated against. They had endured it for centuries. They had been virtually annihilated in Europe by the Nazis less than thirty years before. If anyone understood the plights of African-Americans, it was them.

BUT they SUPPORTED the black leadership. They did not attempt to take over the movement. They did not try to make it about them. About what they went through. 

I was really struck by this today…because honestly I had been feeling marginalized. A bit like I once felt in school…on the outside looking in…wanting to be one of the ‘in crowd’.

And honestly, I did not understand…don’t parents want ACCEPTANCE as much as #neurodivergent adults? Why was I sensing this divide? Maybe I was even imagining it? Over-reacting out of my own past hurts (we all do this)?

But I had not even hit the publish button on the first blog when I checked my Twitter feed and was gobsmacked…knocked on my tail…and honestly put in my place, rightly so.

One of the neurodivergent adults whom I trust and respect the most was responding to a comment about the shared nature of this struggle. He was asserting the need for this movement to be led by neurodivergent individuals…that the role for neurotypicals…yes even us parents…was as support. His exact words struck to the very heart of the matter…

Allies who see the need for change and trust us (neurodivergent) to lead.

And I got it! Like the final piece of that puzzle. You know it HAS to fit somehow. And you keep turning it this way and that. Until finally you see…you just get it. And it all snaps neatly into place.

It would have been a travesty of justice for the American Civil Rights Movement to have been led by whites…even ones who understood discrimination on such a personal and visceral level as Jewish supporters. That movement needed to led by blacks themselves. I get it…. (or I think I do?)

So too does this Neurodivergent Movement.

And let’s be honest, folks…of all the MAJOR autism charities and commissions out there…how many are led by #ActuallyAutistic individuals? To be perfectly fair, if you look at many of those organizations, parents have a more vocal and wider reaching role than autistic individuals themselves.

And that needs to change… 

So let me rephrase what I said earlier…

I am NOT your enemy. But I very much would like to be your ally. I more than trust you to lead from the front…and I will do my best to have your back.

And if I get it wrong sometimes…please have patience with me. I am just human same as you. While this may not be my party, my fight…as a parent of a multiply neurodivergent child, I too have a passion for your vision. A better and more ACCEPTING world for you…and her.

 

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