autism, autism $peaks, autism speaks, captain picard, human diversity, jean-luc picard, neurodiversity, patrick stewart, sir patrick stewart, star trek, star trek the next generation, star trek tng, TNG
Dear Sir Patrick Stewart,
You are one of my heroes. I grew up with the characters you depicted on the big and small screen, who made me laugh, cry, think, and soar to new heights of emotion. You inspired me both as a human being and as your characters, to re-think the way I saw the world, and examine the injustices marring it with critical eyes, and hands ready to re-shape it into a better, more humane, more equal place.
I know you probably tire of hearing this, but more than any other character you depicted, the one who most greatly challenged me intellectually and compelled me towards action was Captain Jean-Luc Picard of the USS Enterprise. Captain Picard embodied everything I ever wanted myself to be: Passionate, convicted, and filled with courage and eloquence. His incredible speeches resonate with me now as an adult who fights a daily battle against injustices like racism, poverty, sexism, and other structures held up by ignorance and prejudice.
And that is why I was so disappointed, Sir Stewart, to learn of your involvement with the organization Autism Speaks. I don’t know how much you know about this organization, but I will give you the benefit of the doubt and assume that you are unaware of their true intentions, which couldn’t be further from their name: They seek to silence, marginalize, and ultimately, erase autistic people, like myself, from existence. Autism Speaks has many problems ingrained in the structure of its organization; for starters, there are no autistic people involved in any major decision-making positions of the organization. It is, essentially, a group of well-meaning but misguided outsiders making decisions that they think are best for people like me, without our input or consent. There are no autistic people speaking at Autism Speaks, our lack of inclusion within the organization, in fact, serves to silence us.
If you dig deeper though, the problems with Autism Speaks only increase. What is truly problematic about this organization is not just the lack of inclusion, but the very core of the organization’s philosophy: They go out of their way to compare autism to cancer, AIDS, diabetes, and other fateful diseases. They make out autism to be a life sentence, condemning not just the autistic person, but anybody whom they see as unfortunate enough to be affiliated with them, to a life of misery, poverty, and other horrors. They take money which celebrities like you help to fundraise, and funnel it, not into helping autistic families with some of the financial and social pressures they face, but towards cushy offices for their top execs and research into potential causes and “cures” for autism. Here are some good takedowns of this organization’s philosophy and approach.
The ultimate goal of Autism Speaks is the elimination of autism. Their research and development largely focuses on some day finding a prenatal test for autism, which would allow autism to be selectively genetically engineered out of existence. Do you remember, Sir, what Captain Picard had to say on this subject in The Masterpiece Society? Let me refresh your memory:
“They’ve given away their Humanity with this genetic manipulation. Many of the qualities that they breed out – the uncertainty, self-discovery, the unknown – these are many of the qualities that make life worth living. Well, at least to me. I wouldn’t want to live my life knowing that my future was written, that my boundaries had been already set.”
I do not want my humanity taken away by Autism Speaks, Sir Stewart. I am a proud autistic adult. I will not lie that my life has had its difficulties, and there are days when I feel pain, frustration, and stress towards how my brain works- But those limitations are mostly caused not by the functioning of my brain, but instead, by the attitudes of people who believe Autism Speaks’ message about my mind and my way of life being somehow inferior, less functional, broken, or a puzzle to be solved.
If you could take away the attitudes and the societal barriers which privilege one way of thinking and being over another, my life would become considerably easier- and it doesn’t take millions of dollars in laboratories to do so. All it starts with is a change in perspective. I am asking you to reconsider your affiliation with Autism Speaks, and expand your definition of what it means to be a functional human being whose way of being is worth respecting and honouring. I believe in a future that is neurodiverse, where many different ways of thinking and understanding this beautiful universe are respected and cherished, not eliminated under the guise of curing a “disease”. Truly, if we want to reach a better world, the first thing in need of curing is not autism, but ignorance and resistance to the idea that difference can be beautiful, exciting, and valuable.
You have many autistic fans who grew up with Star Trek: The Next Generation, you have the chance to really show them that you value them just as much as Captain Picard valued the diversity and beauty of human life and varied expressions and ways of being. I hope that, if you ever read this, you will bring an end to your affiliation with people and organizations who hold values deeply contrary to the ones you instilled in me when I saw you boldly go where no one had gone before.
Live Long and Prosper,
Leah Jane, Autie Trekkie