15 August 2012

If you're not uncomfortable, I'm not doing my job.

If you're not uncomfortable, I'm not doing my job.

I'm not here to reassure you that you're okay, that you're not one of them, that you're not that kind of person. I don't write to make you feel good about yourself, and I certainly don't write to stroke your ego. I don't write because I want people to think well of me, and I don't write because I want to make excuses or amends. I don't write because things are good and happy and positive, because frankly, they’re not. I don’t write to reassure you of your own safety in privilege, and I don’t write to appease you or anyone else. And if your feelings get hurt because I’ve spoken truth, then that’s your problem.

Let me be perfectly clear.

I write because my voice is necessary and valid and legitimate. I write because I need to agitate you. I write to shout from the rooftops that I’m here and I have a voice and my voice and hands are loud. I write because ableism, paternalism, infantilization, murder apologetics, and de-legitimization must be called out wherever and whenever they happen. I write because sitting passively while my people are dying and languishing in institutions just isn’t my style. I write because I am compelled to shout for justice for my people, and I write because that is the only medium in which I can have full freedom of expression to share my rage and my tears and everything that I am and feel and drown. I write because I don’t have the power and privilege to speak my voice in any other medium without fear of shutdown and de-legitimization and silencing.

My voice is my own, and you cannot and will not silence me or keep my words from mattering. My voice matters and I matter. And I am as I am, not as who you’d like me to be or who you pretend that I am or who you wish I could be in some fantastical dream of yours. My voice is unencumbered with the weight of dishonesty or false courtesy or sugar-coating or mitigation. My voice is mine alone.

I am not yours to appropriate in a condescending, paternalistic shut-down of other Autistic voices. I am not yours to commandeer as an example of what you want from Autistics while you use your voice to silence so many necessary and vital Autistic voices. I am not yours to label and put on a pedestal for your own contrived purposes, and I am not yours to use as a token of your supposed respect for those of us who are willing to push the boundaries of radicalism and revolution.

I don’t write from a place of hate—I write from a place of truth and justice; I ache and lose sleep and spoons every day as I thirst for justice and redress for my people. I write because I want to live in a world that is more just and equitable for disabled people like me. I write because I want to live in a world where disabled people have the same access and opportunity as anyone else. I write because ableism is so rampant in the world in which we live now that not writing would not merely do a great disservice to other disabled people but would make me complicit in the perpetuation of ableism in policy and in practice against our people.

If you want to call me hateful, go ahead; you have the right to do that. If you want to call me bigoted, go ahead; you have the right to do that. If you want to call me unreasonable or irrational, go ahead; you have the right to do that. For that matter, go ahead and call me an extremist, call me the fringe, call me delusional or uneducated or ignorant or naïve or whatever other pejorative suits your fancy, because you have the right to do that. But you should know that every time you attack my character and my integrity with your pejoratives cleverly disguised as respectful disagreement, you are silencing my voice. Every time you slander my name and insult me instead of engaging directly and meaningfully with the content of what I write, you demonstrate enormous disrespect, flagrant disregard, and egregious insensitivity to the consequences of what it is that you are doing.

I don’t write to make you comfortable. I don’t write to preach to the choir. If I’m not challenging you, if I’m not calling you out, if I’m not agitating you; if I’m not bringing you to the edge of your seat with white knuckles, bright eyes, and quick breath—then I’m not doing my job right. The moment I slip into complacency, into appeasement, into smiling and nodding as injustice occurs beneath my nose—when that happens, let me be damned. I will not stop writing, I will not stop speaking, I will not stop condemning injustice and ableism when they happen simply because you think you can silence me by calling me hateful.

You might as well come out and say what you really mean—you are afraid of me and you are afraid to hear the truth, as raw and painful as it can and often must be. You are afraid that if you don’t distance yourself from me, you too will be viewed like me, and you too will face silencing and de-legitimization. And so you will bring those tactics to bear against me before it happens to you.

I don’t write to be liked or praised. I write because I have something to say that needs to be said.


  1. Remember, "supercilious" is a hateful word. *eyeroll*

  2. You are part of our Martin Luther King that we so desperately need. Where are our lunch counters we can sit at and get press coverage? We who fight already know that the silencing fire hoses are already hooked-up to the hydrant. What was the word for those who spoke out clearly? It was "uppity"; that sounds a lot like the words "supercilious" and "arrogant" to me. I know this may sound over-dramatic to some people, but there really are people dying out there. [[BTW I use the word "we" in a loose way because I am often too cowardly to go out and protest in public; plus I am way out in the sticks with no reliable means of transportation anyway--those are my excuses anyhow.]]

    Julia Jamal

  3. Glad to read this, I had problems with a certain post where you are mentioned but couldn't articulate it right, I never saw you as hateful, I enjoy your writing, it's validating for me as an autistic person to read it and I see that you care about autistic people, with so much injustice anger is inevitable and needed. We don't have any power right now and different from what some think we are not going to have power any time soon, our anger doesn't hurt anyone, we are not insulting people but we are talking about fighting for rights.
    Your blog and others makes me want to write but I can't express myself so well.

    I think people can get really defensive when someone shows that their views are oppressive, I feel this myself when I read some of the things people from groups I'm not a part of and have privilege over write, I feel defensive and think they are angry at me but I stop to think more about it and try to change my views because they know what they are talking about more than me, it's not easy and many times I fail but it's necessary, I see non-autistic people doing that but it's rare, being defensive is more common, sometimes an autistic person reacts the same way and is supported by others as more diplomatic but I don't feel this is quite right.

    A community needs all kinds of voices, we can't all be nice and make people feel good. I do see some patient people that act like mediators and some can be more diplomatic than others but we would get nowhere if we all act like that. I really don't see the hatred that's being mentioned in other places.

    I also don't understand why we are talking about people and their personalities and not about their ideas and actions. Saying that person is nice and that person is angry doesn't really help, if someone was insulting or bullying I would understand but this I don't see as important, it looks like dismissing what people say based on how they say it.

  4. I am a NT and I read your posts because I want to hear what you have to say.

  5. "Some background. John Elder Robison, as most people know, is famous because of his memoirs, Look Me In the Eye: My Life with Asperger's. So he is Autistic, though you'll almost never hear him use that word to describe himself, as he prefers the supercilious "Aspergian. More recently, he wrote a book called Be Different: Adventures of a Free-Range Aspergian. Fairly recently, I think around 2009 or perhaps 2010, Robison accepted an appointment to the scientific advisory board of Autism Speaks, an organization notorious for its lack of meaningful representation of Autistic people in leadership positions as well as its harmful and ableist rhetoric. I personally cannot comprehend why any Autistic person in his or her right mind, fully informed, would want to work with or for Autism Speaks, but there you go."

    From the statement that was identified elsewhere.

    Hi Lydia, as I'm sure you know, Aspergian is identity first language for one who is diagnosed with Aspergers Syndrome. Aspie is a shorter version of it that some use. While I have seen some use it in conjunction with supercilious ideology associated with supremacy, by itself both terms are part of identity first language, that some prefer. In my opinion, every person on the spectrum should respect the decision of how others identify with this identity first language for themselves, however I personally do not agree with the supremacy ideology that occasionally is identified along with these identity first term or others, as that is potentially harmful to others.

    I personally don't see it as a hateful comment, but suggesting that the term is haughty overall, might not be perceived as respectful to some individuals on the spectrum that choose to use that as identity first language, for themselves.

    I can understand and respect that one doesn't like Autism Speaks, but in the criticism that has been offered to the organization, in terms of the low number of individuals on the spectrum that work for the organization, to suggest that an individual on the spectrum would not be in their right mind to work for the organization, is not only a statement in opposition, in terms of that specific criticism that more individuals on the spectrum should work for Autism Speaks, but it is also can be viewed as an ableist statement as it is using the phrase "in his or her right mind", associated with mental illness, in pejorative use, associated with someone on the spectrum. It's not much different than suggesting that someone would be insane or crazy to work for autism speaks.

    The bad thing about statements perceived as personal attacks on people on the internet, is they don't go away, and have time to heal as verbal attacks do, they are always there potentially resurfacing to lead to potential additional perceived personal attacks.

    I think it is just as important to be respectful of those that we disagree with as those that we agree with. And always better if possible to address the statement of disagreement rather than the person, in any negative way. So much easier to do in written communication, than in verbal communication:).

    When a statement is made at me, that I feel is an attack on my dignity as a human being, I try very hard not to continue it in a personal manner. It is too easy to forget that one is typing at another human being when one is on the internet. This isn't just an autism community issue it is an overall phenomenon one sees almost everywhere one goes on the internet. The human element is never the same as it is in face to face interaction.

    I suggest that personal attacks, should be in the same category as ableism as both have an equal potential of reducing human dignity, and are a sure way to end an internet association with someone for good, if one does not have a strong spirit of forgiveness that we all have the potential of crossing each others "boundaries of dignity of humanity", without always consciously realizing it.

    1. I rarely see anyone using aspergian, I never thought of it as identity first language for asperger's syndrome especially since many people that have an asperger diagnosis use autistic and obviously I see aspie used a lot.

      I have read things from John Elder Robinson that are elitist/supremacist and ableist, many famous autistic people have some elitism and internalized ableism in their writing, because of it I can understand that reaction to "aspergian", it looks like trying too hard to run away from the term autistic and combined with some problematic views. I actually have the same reaction to it because of the apparent thought behind it. The term Aspergian is not existing in a void for me, I don't know how the author of that phrase feels about it.

      You have some good points but I think people don't really know hate if they think that was hateful or insulting, judging someone decision to work in a bad organization is not an insult or hatred. Maybe while she was trying to judge his decison to work for A$ in her frustration she attacked him in a personal way.

      I do agree that the "in his or her right mind" sounds ableist and similar to saying insane and we should avoid personal attacks, I just don't see the horrible attack on what was written.

      I actually think the human element is stronger on the internet than it is face to face but many sound like they forget they are talking to people and many would be rude offline too, maybe they would just worry more about the consequences.

    2. Interesting, it is a matter of perspective as I have been in autistic communities where the term aspergian has been used by several people to self identify. I'm not sure if John Elder Robison coined the term, but many of the terms in the neurodiversity movement have been coined by those on the spectrum, and are used only in limited areas of the spectrum.

      One could say an autistic person, or I am Autistic, or say an aspergian person or I am Aspergian. One could also suggest that the use of the term autistic is supercilious as well, depending on individual perception, and experience.

      And as far as point of view, this was the issue of the discussion as one individual perceived the paragraph about Robison as hateful, which he was careful to state from his point of view, which likely, in part, is because he respects Robison's point of view, while this individual was in strong disagreement with it.

      One thing I often see on the internet is personal attacks based on spelling errors, or grammar errors in insulting one's intelligence, however in a significant number of those cases when one takes a second look at the person providing that personal attack there is often a spelling error in the same paragraph where they attempted to insult the other individual's intelligence. It is very difficult to avoid the faults we point in out in others, as most everyone makes these errors of judgement.

      When I was discussing the issue, I could have used the word hypocritical in both instances as the use of the word "supercilious", itself could be perceived as a type of haughtiness/elitism in context as close to 38% of individuals on the spectrum, some of which are listening in, do have identified problems with learning disabilities; as well as the defense of identity first language, unless one doesn't like individuals diagnosed with Aspergers using identity first language, as well as referring to Autism Speaks as an ableist organization in context with using abelist language as a personal attack against Robison for working with the organization, but in my opinion that could be perceived as a personal attack as it can be perceived as an insinuation of a character defect, where I think it was just a matter of different perception; so I stated could be perceived instead of hypocritical action, and in opposition to an argument rather than hypocritical statement.

      The other individual is friends with Robison, as well as protective over individuals rights to use identity first language like Aspergerian, or Aspie, and could reasonably feel the emotion of hate in a perceived personal attack against his friend, as an empathetic reaction. He was careful to suggest it as his point of view, but I perceive calling someone out by name for a perceived mistake they made in the past on the internet, whether or not the other individual conceded it as a mistake or not, to prove a point in the present, as potentially offensive to the other person. This kind of stuff happens in real life all the time, however it is most often done behind the person's back instead of in public, in order not to offend the other person, which also has a consequence online as well.

      And actually, although I have been careful to avoid names, it is almost impossible for people not to be identified when every word in a community can be researched and traced back to the individual, with or without personal identification, so in part I am guilty of this as well in discussing the issue; again it's hard to avoid online. But, perhaps worthwhile information for someone listening in for their future communication online.

    3. Kate Mia you say you don't see something as a hateful comment but nonetheless make the association anyway even though you give no reason to explain how it is hateful at all. You have been known to harass other sites with such duplicity before. This is more and more being seen as a harassment of the autistic community.

    4. As I explain above it is a matter of perspective. While I perceived part of the statement as potentially disrespectful as well as ableist, another individual described it from their point of view as hatred, as it could also be reasonably perceived as a personal attack, if one were the subject of the comment or a personal friend of the subject. Hate is an emotion, that varies from one individual to the next, and can be perceived as such, whether or not hatred is intended or not.

      The author of this article is not afraid of constructive criticism or disagreement. There are some that do consider constructive criticism or disagreement harassment or even hate, as that is an emotion that constructive criticism or disagreement can potentially generate as well. The Autism Community is a diverse entity, with diverse opinions.

      I was a non-verbal child, and not a part of the spectrum that is the bulk of the voices in online autistic communities, as well as a parent of a child that experienced a devastating impact from a co-morbid condition associated with Autism. I am the only one with this experience that I have come across, so far, in thousands of conversations with diverse groups of individuals in the autism community.

      Perhaps that experience and perspective colors my opinions differently and causes some discomfort to those that may not be able to relate to that perspective, but never the less, I share it.


Hi! Thank you for sharing your thoughts with me. I manually approve comments, so sometimes it takes a few weeks, months, or even years to find and approve comments. This delay is normal. (Note that I also don't publish every comment, since this is my personal blog.) Unfortunately, anonymous commenting isn't available anymore since it resulted in over one million spam comments in a short period.