Thursday, April 9, 2015

Dear John (Elder Robison)

Dear John,

Remember during the efforts for the freedom of Reginald Neli Latson when I said that I was for the first time, doing something I thought I would never do; and then, I posted something you wrote and shared it on social media? When you asked what drove me to make such a statement I wrote back that our writing is entirely different as I write about the marginalized populations within the autism conversation?

I need to also say I avoid reading some of what you write because I wish to not respond emotionally to it and be hurt by your words. I occasionally forget my vows to avoid your content and read something you write. I then regret doing so. Not because it isn’t well written, but because I view the world so entirely differently from you that when you make a statement from that large platform you have, and that statement has the potential to harm people like my son by influencing the way people view him and his peers, I get angry.

Here is an example, from a blog post for Psychology Today titled “April is Autism Awareness / Acceptance Month.”  You write, “We may have gifts too, but disability remains the basis for diagnosis. Some autistic people are rendered non-speaking by their condition, and I can’t imagine who would celebrate that. Others live with significant medical complications like epilepsy. I’ve yet to meet anyone who celebrates that either.”

Crohn's patient Bethamy Townsend Celebrating her honeymoon
and  rocking a Bikini with colostomy bags credit HuffPost UK
Let’s just pause for a brief statement on living with significant medical complications. I live with Crohn’s disease and other health issues. I have survived a great deal. I celebrate being here, as does my family each day I outlast expiration dates, because I was told I would neither have children nor live to age 30.

When you write about nonspeaking autistic people, people like my son, your writing perpetuates the same ableism that people who are not autistic (and have no concept of what the experience of autism is for nonspeaking individuals) does. Have you asked a nonspeaking autistic person if they wish to celebrate? Not being able to use one’s vocal chords to produce speech does not mean not being able to think or communicate. Over and over again, human beings demonstrate neurological competence in the face of medical diagnoses that negate competence. We have examples like Jean-Dominique Bauby, who produced an entire book after waking from a coma and while being paralyzed such that only one eye functioned.  Your statement discounts the research of British neuroscientist Adrian Owen, who, to quote an article on brain activity:

“ …described a patient who showed all the clinical signs of a vegetative state but whose brain activity suggested a considerable degree of consciousness. Horrifyingly, the report implied the existence of patients in a state worse than the usual locked-in syndrome: conscious but without any means of expressing it to the outside world, not even through the batting of an eyelid. While demolishing established clinical rules, this research also carried a message of hope: brain imaging was now sensitive enough to detect the presence of a conscious mind and even to reconnect it with the outside world.“

This news is cause to celebrate. What it means is that some measure of neurological competence can now be detected by brain imaging. That means a greater population of nonspeaking people have the potential to be understood whether they speak or not. Evidence like this urges us to presume competence exists in nonspeaking people and respect them accordingly.
Martin Pistorius and wife, Joanna credit NPR

This statement you wrote ignores what autistics like Carly Fleischmann, Emma Zurcher-Long, Henry Frost, Amy Sequenzia, and nonspeaking disabled adults like Martin Pistorius stand for, and what they
say when asked about being a nonspeaking person prior to finding a means to communicate. All say that they are presumed incompetent, maltreated, and were entirely dismissed prior to being able to let the world know that their brains understood what was being said about them and what was being done to them. We have seen a brain command an exoskeleton encasing a paralyzed body to kick a soccer ball. We have heard people who learned to type and use AAC to communicate tell us that being in what medical professionals define as a vegetative state, or being a nonspeaking person, does not mean you don’t think, feel, and understand, and yet you still see no cause for people like my son to celebrate?

My son’s very survival is a miracle. He doesn’t have to prove his competence by demonstration of savant talent. Pity is not wanted or required. You don’t know him. I do. He NEVER gives up. He overcomes his fears daily and takes great personal risks to reach out and communicate with us. Nearly everyone in society doesn't feel his life is worth celebrating. That includes some autistic adults who use verbal speech. But our family feels the way our son lives his life, and his repeated demonstrations of personhood in a world that denies him competence, make him a heroic person. He is a stronger person than anyone I’ve met. I’m over 50 and have travelled extensively, so when I say anyone I mean anyone in a very large pool of human beings. I know I am not alone in being a witness to the greatness of a human spirit as it overcomes so many obstacles and shouts with all means available to be heard. I am so sorry you do not feel that is worth celebrating.

It is neither my intention nor my wish to deconstruct your entire piece. I only hope to demonstrate one of the reasons there is this canyon divide between how you and I view autistic people like my son. He doesn’t just exist. He lives in bright, live, movements and gestures that communicate his joys, sorrows, struggles and victories.

Each April we remember all we were told he could not and would not do that he has already done. We celebrate his right to personhood not qualified by a savant skill to justify it. I will continue to do so. Because he, like so many others I’ve met who are out there demonstrating their competence everyday, are worth it.

I don’t call the month of April Autism Awareness or Acceptance Month anymore. I call April the month of Mustafa and his neurotribe. I call it the month of possibility. The month of pride in obstacles overcome, and the month of the idea that autistic can be an identity without qualifiers or conditions, deserving of respect and worth celebrating.

Of course the public needs to be educated about what autism is, but that is because what we call autism continues to change and at each evolution the definition of what diverges and what that means changes with it. Of course we need help. I don’t think anyone including my son would deny that he needs accommodation and supports to access our community. He knows I am aging, I tire, and families need help too. But that doesn't mean that who he or his peers are should be denigrated or thought of as unworthy of celebration because it diverges from those autistic people who are less distinguishable from typical peers.

I will try, going forward, to read more of your words. Honestly this is the only way in which I can understand what you wish to communicate fully. In exchange, I ask that you try reading the words of nonspeaking neurodivergent people who communicate by other means. Reach out to them and use your platform and your words to help rather than expressing you see no cause to celebrate the idea that they are nonspeaking.

I think this would help us both understand one another better.  Happy Autism month, John.




  1. It's interesting to me, how different we all are and where we are in relation to autism. I recently had to distance myself from someone who I think is pretty brilliant on the subject but who also seems to have a mean streak, I feel they're baiting people into disagreeing with them so they can vent their spleen. It's a very sad thing to watch and not be able to do anything about. And I did try. Maybe it's my age, I'm older than most in the community,and I just don't have anything to prove. I also don't feel the need to keep perpetuating the idea that we're disabled beyond the need for adaptations so many of us need and deserve. If society saw us differently they would treat us differently, services and accommodations would just be seen as normal. We would seem normal. You've written a great letter, I hope he takes it to heart.

  2. Comparisons of autism to epilepsy are indeed valid... but not for the reason that John and other curebies, open or otherwise, think it is.

    I am sorry, I will start from the beginning. Twenty-seven years ago as of this July, I was diagnosed with type one diabetes. It still boggles my mind as to how much ignorance there is regarding the condition at the highest levels. I was throwing baseballs and running to such an extent that I could eat at McDonald's four or five days a week, and still not be more than a kilogram or two over the unrealistic BMI of now. Then I started getting sick. Really, really sick. Not just with the ketoacidosis that accompanies undiagnosed type one diabetes, but all kinds of viral infections that doctors had to administer injections to treat.

    Nowadays they say in a few publications here and there that diabetes is actually the end result of an autoimmune disorder that causes the body to mistake islet cells for foreign bodies. I could have told them that for free, honestly.

    But the thing is, diabetes and epilepsy kill people. The manner is a little more indirect and time-consuming with diabetes, but if the anti-vaxxers got their wish and "biiiiiiig baaaaad pharmaaaaah!" went away tomorrow, it would take weeks or months for all the people with diabetes to die. And it would not be a pleasant death. I am told that similar can be said about epilepsy.

    Nobody has ever died as a direct result of being autistic. That is the stumbling block that John and his former paymasters try to pretend is not there. Take away the bleach enemas and other ridiculous "treatments" of autism that Autism Speaks FNA used to openly advocate and advertise. The causes of death chart would not deviate one iota between the autistic populace and the normie populace.

    Autism Speaks FNA and John Sellout are aware of this fact, and they fear it becoming more widely talked about. Which is why we should talk about it. We should repeat their crackpot comparisons between autism and cancer or diabetes, then demonstrate why the comparison is legitimate for the opposite reason to what they want people to think.

    I lost an aunt to a brain tumor that began as a lung tumor. I lost a substantial chunk of my face to skin cancer. I still have a right cheek, but one that is slightly shallower than the left and can be cut to rags without much feeling. I also fear for good reason that I might have a complication of diabetes that doctors call "neuropathy of the gut". I will leave people to look that up for themselves to see how unpleasant that can be. Every injury that has been done to me that oh-so-concerned citizens would like to blame my being autistic for is in fact the result of how others have treated me on the basis of being autistic. Knowingly or otherwise. So when Autism Speaks FNA moans about how investment in cures for diabetes or cancers vastly outpace investment for a cure for autism, I tell them yes, they do.

    That is exactly *as it should be*. Autism has never really killed anyone.

  3. (2nd attempt, sorry if this shows twice)

    Hi! I have a question: does John have an internal issue with his own autism by chance? Thanks!

    1. John and I have never met, so I can only understand him through what he writes. In John's own words, he has subjected himself to Transcranial Magnetic Stimulaton, or TMS as a treatment for his autism. This made me sad, for reasons I can't explain

    2. My answer is in the form of a question. He joined Autism Speaks and basically let them use him as a token to try and legitimise themselves. How else would you explain him doing that?

    3. (Also second attempt)

      My answer is in the form of a question. He joined an organisation that srpuiks for our genocide and calls us things you would not dare say to the faces of other minority groups. He let them use him as a token to give themselves a further illusion of legitimacy. What other explanation do you propose for him doing those things?

    4. Robison is obviously a filthy traitor who has a preoccupation with his impending demise at the Communistic hands of A$. I won't feel anything for his sorry sack...

  4. I think that maybe some dissemination might be useful...there is a huge difference between celebrating the joy of life and the goodness we have and celebrating having autism, epilepsy, or Crohns. John is saying, I believe, that few people celebrate having autism. But that should never stop us from celebrating the life we have been given. There is no normal. Some may look 'normal' but everyone has their shit, if only their inability to truly see others as they are.

    1. Hi. While I appreciate your input I don't support anyone speaking for John, or speaking to their belief of John's intent, because this is something frequently done to autistics that presumes they are incompetent to speak or clarify themselves. John responded himself below. At any point where I have expressed upset or concern, John has always responded directly. I need to correct you about something you said. I personally know literally hundreds of people who celebrate having autism. Some of them blog about it. Speaking and nonspeaking, they celebrate who they are just as many people celebrate being born deaf. Understanding why they do this is our responsibility to learn in order to understand them. It is actually not their responsibility to justify to us. Probably the largest issue facing our community is the very statement you made, that presumes that someone who is autistic has a negative view of their own personhood, or should have a negative view of their own personhood, because they are born with divergent neurology. This point of view, that a person born different must feel they are the children of a lessor God because we see what makes them different as undesirable is the problem based on a belief that medically defining someone is more important than understanding them as they are.

    2. I forgot to say that epilepsy and Crohn's are not the same as autism. And also forgot to say that yes, you can celebrate any factor, including Crohn's or epilespy that is a catalyst or transformative agent in one's life. So autism can be celebrated because it is part of one's personhood. What people are is not what you think of them. it is about how they see all those things that combine to make them who they are.

  5. Thank you for your thoughts on my essay. I must say that I was surprised and saddened by your interpretation of my words, which is strikingly different from what I intended.

    Yet at the end of your letter, you say: I don’t call the month of April Autism Awareness or Acceptance Month anymore. I call April the month of Mustafa and his neurotribe. I call it the month of possibility. That is exactly what the point of my post is too - we should celebrate individuals like your son, and our entire autistic tribe.

    Whether you celebrate the autism itself, or the disability aspects of it, is another matter and one for each individual to decide.

    You say you don't like to read my writing because it upsets you, so I will not write any more to you but I will consider your thoughts, my intent, and how I might communicate my ideas more clearly in the future.

    Best wishes
    John Robison

    1. Hi John,
      Thanks for responding each time I have a concern. Their are opinions in your writing that do upset me. If I did not wish you to respond or explain I would not have made this a letter to you. I would have simply deconstructed and listed every instance in which you've written something upsetting. You have a right to be able to respond, clarify, and discuss your body of work to everyone, including me. But this particular topic is one where I must differ to nonspeaking autistics who type to communicate to explain how they feel about this month and why they celebrate who they are as nonspeaking autistic adults so at the end of this letter I asked that in exchange of my effort to understand you better by reading your body of work, that you read the words of people who type to communicate. This was about them, not me. Also I rarely address, criticize, or name folk I don't feel like talking to. If I'm criticizing you, that means you are worth taking the time to criticize. I have a young man about to enter his teens who commands a great deal of my time and attention so time is something I feel is precious enough to spend wisely.

      Best Wishes to you too,

      Kerima Çevik