“We are all equally distant from the sun, but we all have a share in it.” -Thornton Wilder
I heard this quote and the first thing that came to my mind was “neurodiversity”. The second thing was simply “diversity”.
A lot is happening in the world, the good and the bad. A lot is happening in my life, mostly awesome things. The bad is that the seizures are still relentless.
Online, in the world of Facebook, my community came together to help someone – who most of us never met – raise funds to attend a conference that ranks high among Autistics. The fundraising effort still goes on, even though it took only two days to reach the goal. This was Neurodivergent K’ idea, she was giving back.
I thought about this quote by Tennessee Williams: “It is marvelous to be shattered by kindness”.
I was so proud of my community! Good things were happening to me and one big reason is the support and encouragement I receive every day.
Good things were happening to other Autistics because my community is inclusive and wants to hear from anyone who has something to say, anyone who wants to advocate for autism acceptance.
But then I heard it again. The division, the elitism, the functioning labels.
It wasn’t a new statement but was the first time I heard it. And, sadly, it was a statement made by someone I once praised for his efforts toward autism acceptance. Was the statement a reflection of his true feelings? Has he thought it over, has he changed his views, seen the harmful tone of his words?
Unfortunately, it does not make a lot of difference, since there are quite a few people who would endorse those words. And they are part of the same spectrum I belong to. We should all be working together for the inclusion of all Autistics.
Functioning labels is something invented by “experts” in order to grade us. It says that some of us should be pitied, that we are better off being segregated and treated like children, since we don’t have much to offer. We are also the ones who are disproportionally abused and tortured under the guise of treatment.
The grading of Autistics also says that some of us can be successful. We are “almost normal”, therefore we should be included and accepted. We are to be celebrated. But we should keep our disabilities invisible. We should not look so “abnormal”.
What this invented functioning grading ignores is that any one of us can bounce along the spectrum at any given moment.
As I said before, I was classified in the pitiful group. I don’t deny the impairments I have, or the enormous amount of help I need. Many of us just do. But should we be ignored because our body is rarely in sync with our mind?
Together with many in my community, I have been fighting to debunk the myth of functioning labels. We have a growing number of neurotypical parents joining us because they know that their children’s success begins with understanding the whole person. They listen to us. We want to be presumed competent and given the tools to show our competence. We also want to be understood and given space when we need to work through our invisible disabilities.
None of the above has to do with our ability to do complicated math problems, use the bathroom independently, complete a task successfully, graduate from college, hold a job. We, human beings, are much more complex than that and we all need some help. Some might fit better in a society that, for the longest time, has ignored us. But I deserve that same share of the sun. We all do.
I’ve been listening to an audiobook about the Women’s Rights Movement. It was a long, sometimes frustrating fight, one that is not yet over.
I am learning about all the other very important names we don’t hear much about. There were numerous women, and some men, before and after Susan B. Anthony and Elizabeth Stanton. They were all invaluable for the success of the movement.
I am also learning about the small, sometimes big, points of contention. Some activists did not believe a woman should have access to higher education; some believe women did not need to vote – their fathers, husbands and brothers could represent them. There were many points of disagreement, in many combinations. But the activists were all abolitionists and they all had a lot in common. The fight for equal rights moved on – even though a lot was left to be polished after the Declaration of Rights and Sentiments was signed.
My main point is: some ideas and some people were not believed to be worthy. But they were included anyways and the movement was more progressive and successful because of that.
I hope that, in the future, the history of the Autism Rights Movement is written by those who love facts, research and historical context. And I hope that we are all included. That’s one reason why I am an activist and why I write: not to be famous or to be recognized (although this is also cool), but to make sure that it is registered that we all had important things to say, we all had value and we all had the support of many. Hopefully, it will be said that we impacted the movement positively.
I know some Autistics and some people diagnosed as/with Asperger’s don’t like to be associated with some other Autistics. The reason is bigotry. They don’t want to be called Autistics, or they insist on labeling themselves “high-functioning”, because they want to distance themselves from Autistics like me: the ones who need help getting dressed, eating, showering, using the bathroom. They don’t want to share a diagnosis with someone who screams (some situations are overwhelming for some people), someone who might hurt himself.
To them I say: is that all you see?
If you are so stuck on appearances, you are a supremacist, and this is sad.
But I believe our Rights Movement will succeed. Maybe I will not make the greatest contributions. But maybe I, or someone who looks a lot like me, will. Who knows? Things, and people, change all the time. All voices are important, all voices have value – even the silent voices.
To the ones who prefer to distance themselves from me because you don’t like to have the same diagnosis as someone who moves, looks and acts like me, I have a confession to make: I am not happy to be associated with you either. Not because of who you are, but because of your exclusionary views.
I will always welcome you, though. Your voice is important. History also registers mistakes and division. But if the Autism Rights Movement’s history will be told as a successful one, it will be because all voices were heard, including mine, including the voices of the ones you don’t believe have a lot to say.
About the Author, Amy Sequenzia.