Silencing

“Having a voice after years of being ignored saves me from treacherous loss.  Years of nothing, makes the smart ideas percolate.  It is a strong force within, waiting for encouragement.”  ~  Emma

There are people who would like to silence my daughter and those like her.   One person recently accused me of “exploiting” my daughter to “satisfy your own vanity and craving for attention” by publishing things Emma’s said she wants others to read.  This particular person went on to write (as though to Emma), “Autistic people are irrelevant in your mother’s world.  And parenting is more of a competitive sport to her than a domestic responsibility.  That is truly disgusting.”   And yet if I do not publish the things my daughter writes and says she wants others to read and understand, then I become the silencer.  I cannot presume her competent, but then selectively do so, by not publishing what she has asked to have published.

As with my older child, we have discussed, and continue to discuss at length the internet, the importance of realizing what one says on the internet, stays on the internet.  We have discussed issues around human rights and advocacy.  We are currently engaged in an ongoing discussion related specifically to blog writing because of the book we are reading, I am Malala in which Malala writes about being increasingly threatened and silenced by the Taliban and how her right to an education was taken from her simply because she was born female.

There are those who say that the words someone like my daughter writes are not really hers.  This is a different way of silencing, but it is as equally brutal and effective.  They say that because science has not shown RPM to be an easily replicated method it is therefore suspect.  They say, parents like me are so determined to believe in their child’s intelligence and competence, we will go to any lengths to “believe” even when it’s clear (to them) our children cannot possibly be the competent beings we know they are.  This is the opposite of presuming competence.  They go on to suggest that though (in the case of RPM, where there is no physical contact of any kind) no one touches my daughter, those nearby are able to influence, so much so that they can actually force the person to point to letters, which spell out things they do not mean to write.

People like my daughter are in a perpetual state of limbo, a kind of no man’s land, neither here nor there.  For those of us speaking out, writing about all of this, giving our children a platform from which to write, we are easy targets.  There will always be people who disagree. There will always be people who are threatened by ideas that confront what they believe and have been told.  There will always be people who viciously attack for reasons that may or may not be apparent to those they strike out at.  I’ve been fortunate and have not had many who have attacked.  In fact this recent commenter is the only one who has come after me, repeatedly, with such viciousness and undisguised hatred.

But I will not be silenced, nor will I allow my daughter to be; as long as she wants to be heard, I will do all I can to make sure she is.

*Emma chose this photograph to go along with her and my words.  Yes, I read this to her, before publishing.  And sadly, it seems, I must also state the obvious,  I do not and will not publish anything ever, that she does not want me to publish.  This blog will disappear the instant Emma tells me she wants it taken down.

Emma Riding Beau

Emma Riding Beau

 

62 responses to “Silencing

  1. Oooo she’s riding a HORSE?! COOL!

    But yeah, these attacks. It’s so irritating. Autism is something people just don’t understand and when people who know what it’s like try to explain it people say, “You are not autistic enough.” They really need to be quiet and listen.

    • The person I quoted in the first paragraph is Autistic. They started coming after me about a year ago… I had hoped they would stop, but they keep coming, changing names to get around the blocks I’ve placed… it’s really sad.

      • Tami Sweitzer

        I agree some parents consider this a competitive sport, some autistics are guilty of the same. I find them more offensive than the parents.

  2. You go on winning, all of you. A family of writers, with one of you (hi Nic) a filmmaker (yes Nic I totally think your films count as films). If any of you are silenced, the world will become much less excellent. I love you and am so happy you are of one family with my family xxoo Love, Ib

  3. Your blog is inspirational and informative. I can’t understand why someone would feel threatened about it if not for their own selfish reasons. I enjoy Emma’s Hope Book and I know it is providing hope to many. Lilka

  4. GRRRR to these people.

    But in (sarcastic) reply to these attack-y people, I’d really like to know who these neurotypical “people of influence” are (that the jerks refer to) who have the powers of TELEKENISIS, enabling them to INFLUENCE OTHER PEOPLE WITH THE POWER OF THEIR MIND!!! (sarcasm)

    You all rock, and we’re here for you!

  5. It should be clear to anybody reading her words that Emma writes with a voice that is distinct from yours, Ariane (or Richard’s either for that matter). The suggestion that you might be directing what she writes is ludicrous.

    Of course as parents you both influence your children: it is an important part of good parenting to guide your children morally and to educate them beyond what can be covered at school. I believe one mark of great parenting is a child with an active, inquiring mind, one who seeks to analyze and understand the world around her. Emma is a shining example of this.

    I’m very proud to have gotten to know you all. ❤

    • I’m so glad you brought this up – “Of course as parents you both influence your children: it is an important part of good parenting to guide your children morally and to educate them beyond what can be covered at school.”
      ALL parents influence their children, regardless of neurology. In fact most people influence those they are close to. I’m certainly influenced by both my children and my husband. I’m influenced by my siblings and my mother. People influence each other, some more than others. But rarely to the extreme that people accuse parents or those who work with the non-speaking population or those who write to communicate their more complex thoughts and opinions.

  6. I would just like to say that not for a single moment did any such thoughts about you, not even mild ones, cross my mind; quite the contrary actually! Yes I am green with envy at Emma’s ability to use words, but what a terrible loss to humanity to even think of silenciing her! I, for one, cannot wait to hear what she comes up with next – it’s like tasting something extraordinarily delicious that I’ve never tasted before! xx

  7. How can anyone make such a nasty disgusting comment..shame on them…..Ariane and Emma continue with what you are doing..its influencing many special need parents like me to hope and move forward in a right direction….remember dog always barks when an elephant moves on the road..but it moves unless it reaches where it wants….just carry on…

    • Thank you Zeba. I had not heard this saying before… “dog always barks when an elephant moves on the road..but it moves unless it reaches where it wants”
      Ha!

  8. I’m really happy that Ariane wrote this, since she has been struggling to write anything since being attacked so viciously. She is much kinder than I would have been (or will be in my comment/rant). She is more forgiving and tolerant than I am as well. She would rather not have to confront this deed publicly and has done so only out of necessity, to protect her free speech and more importantly, Emma’s free speech.

    The guy who wrote this hate mail to Ariane has done the same thing to many other people. Unfortunately, his brand of ugly intimidation has been successful in silencing other bloggers/writers to greater and lesser degrees. Interestingly, he seems to target women almost exclusively. Some are autistic women, some are not. Some are parents, some are not. The common ground is that they are women. He is a blatant misogynist as well as a hateful asshole.

    In the past, some people have tried to explain/excuse his behavior because he was apparently abused quite severely as a child. Well guess what, I haven’t met a single autistic adult who WASN’T abused quite severely as a child: by bullies and creeps, by ignorant assholes, by ABA therapy, by medical “experts” who define autistic people by what they see as deficits (which are often completely false, like “no empathy” bullshit), and yes, I know some autistic people that have been (and sadly, continue to be cruelly abused and neglected) by their own parents.

    And guess what, lots of non-autistic people have also been and continue to be horribly abused by their parents. My father beat me physically several times a week, often daily, until I was old enough to kick his ass, which I did. That’s how it works with bullies. They are utter cowards. Fearfulness is their core identity. Kick their ass and sometimes it shuts them up. Other times they get armed to the teeth and visit schools. I wouldn’t be surprised is his rage became murderous, since he previously wrote that he was sympathetic to the Unabomber.

    We have reported him to the police, hopefully he will be punished for his crimes against us and so many others (yes, serial harassment is a crime). We will defend our right to speak. We will defend the right of others to speak, but hate speech is not free speech. There is always a tremendous cost in suffering.

  9. Emma’s words and yours inspire me to seek out my 8 year old autistic daughter’s unique ‘voice’ and to presume her competence, and I see the impact of that already. Please keep it coming.

  10. Carry on, sisters, carry on.

  11. You KNOW you are helping us.
    You have only to read and re-read our loving and grateful words. They are there for all to see, yours for eternity.
    With so much love,

  12. I always leave here feeling inspired and informed, and so do many others. I hope both of you know that. I am so sorry that you are being bullied, I hope that is rectified soon. Thanks to both of you for soldiering on, know you have a lot of support (and to Richard too!)

  13. My son lost his speech and then regained speech with endless struggle and hard work. He could school these fools in a second.

  14. Can I have some of those telekinetic powers? 😝 and i agree w Alex that not only is Emma’s writing distinctively different than yours and Richards,it is also characteristic of many other autistic people i have read. It is not quite like reading a non native speaker but thats the best comparison Ive got. Word choice, descriptors, syntax and many other things are just a little different than the everyday allistic writer even taking into account education and location. Just as autistics see the world differently they also tend to write the world differently. This is in no way a bad thing…I am dumbfounded by Emma’s writing…it just makes it obvious to me that they are distinctly Emma’s not written nor influenced by you. Keep on writing the both of you…there will always be trolls and people so wrapped up in their own miserable world they’ve created, but there are also those of us who can now see a bright future because you and Emma exist and share your lives.

  15. Keep up the good work. I enjoy reading Emma’s word from a aspie

  16. Sigh…. So sorry that that happened to you and Emma.

  17. blargh. I feel like those people don’t want to believe what their eyes (in the case of the videos you’ve posted with Emma’s permission, or in person experiences both with Emma and others who use this method) or anything. Like many methods, it is possible for someone to do it manipulatively, but… IDK. To blanket statement the method as bad because some people do it wrong seems suspect to me. And to deny someone communication and broader access to community because someone else has shitty staff/supports just seems wrong headed to me…

    Also, I’ll never forget the woman who used FC who presented with her mother at the Autcom we met at, who when her mother deviated even a little from what she actually communicated made it clear and her mother apologized for going off. I liked that. Not that her mother slipped up and added her own comments where they weren’t wanted, that sucks, but that the woman felt comfortable and empowered to call/correct her mother on it. To me that was a positive demonstration because it showed that for all the human flaws of the facilitator, the communicator was still in charge which is how it should be in those cases. And that was someone whose FC DID involve touch.

  18. Marie Brennan

    Don’t let the pickle suckers get to you. You are all doing good work. Emma is learning and growing. She is happy and strong. You are all enjoying each other. What more could a family want?

  19. Reblogged this on bunnyhopscotch and commented:
    I was a verbose child, so my silencing was a little different. I was made to speak the language of Other, while the utterances of Self were stifled, especially when my articulations ran contrary to the norms and demands of Other. Kept inside a golden cage, fed and rewarded when I performed accordingly, when I sang Their song well, and run down in spirit for yearning to sing My songs. It was a tremendous effort, at a very late age, in middle age, to break free of this tyranny. Life outside the gilded prison is extremely difficult, but having a Voice is paramount to existence, and I would wish for nothing else for every other person whose voice needs to be heard, who needs to have the dignity of a Voice. Thank you, Ariane, for all you are doing for Emma. She is all that matters. Her Voice.

    • Thank you for sharing this. Really poignant and sad. I’m sorry you weren’t encouraged and supported to speak and sing in the way that came naturally to you. Those you grew up with sadly missed out on witnessing something profound.
      One of the most beautiful things I’ve experienced in this life is reading my daughter’s words…

      • Thank you, Ariane. I grew up in a time and place when Autism/Asperger’s didn’t exist. Perhaps it was more an innate survival response for them, rather than a deliberate conscious act of subjugation. I am very moved by your love and wisdom for Emma. You and Emma both give me hope. Thank you, Emma, for your beautiful voice!

  20. Haters gonna hate. Chuck it in the Fuck it Bucket! 😉

  21. I do my best, Z. Yes, Jesse has his work cut out for him. Have a great weekend!

  22. I would love to smack people like this upside the head with a large mallet but I guess that wouldn’t do any good ha. Keep on doing what you are doing, never silence yourself and certainly keep blessing us all with Emma’s words. Our children deserve a voice and these people are ignorance incarnate and have absolutely no say in what others need. Totally adorable pic of Em by the way ❤

  23. Emma is lucky to have you as her Mom and main supporter..Her voice is important and needs to be heard..No matter the form it may take, you have found the form now and it may change in the future..My grandsons are finding their voices every day be it with the IPad or IPod or movies or others phrases..To hear “Grandma” is music to my ears and my soul..Keep up what you are doing with and for Emma and you inspire us all..

  24. Emma, you and your family are a shinining light to me while I struggle to navigate the world with my adult son on the spectrum. While I can’t always correlate what you experience with our trials and tribulations, I read every day to keep learning and plodding along. Thank you for bringing light and enlightenment through your words and experience.

  25. Marilyn Dixon

    Ariane, Richard, and Emma, I am so sorry that you had to hear such hateful words from someone who is obviously ignorant. Even though you know it is not true, I know it still hurt. There is no excuse for his behavior and hate speech, and I am glad you reported him. You are all blessed to have one another. Thank you for the inspiration, encouragement, and support you give to those who communicate differently and to their families. Araine, I agree with you and Camelyne that those who communicate like our daughters use “word choice, descriptors, syntax and many other things are just a little different than the everyday allistic writer” and that “there’s a poetry to the words not usually found with fluent speakers who write.” I am constantly amazed (even after over 20 years of reading Kim’s words) at the uniqueness and quality of her writing. It is so different from mine.

  26. Even close friends often say my words are not mine: “I can tell you had help typing your message to me, good for you for getting help!” … So very very rare someone to really accept my words as my own. Never did any form of FC, no one wanted to help me learn to communicate, did it all myself. Still people say my typed words are not my own.

    Or. People say. Accuse of being able to speak but choosing not to (as out of willful disobedience/rebelliousness/disrespect/etc.).

    It is. Never possible to “win”. No matter what.

    Very few people are deserving my typing to them. So much effort, not to be wasted on most people. Sometimes it is sad, wish for people to type to, but not usually.

    Like reading what Emma person says. Hope it is to keep posting.

    Sorry for bad grammar.

    • Ari – Thank you for sharing this here and with us. I know what it takes for my daughter to write a sentence. I know the effort it takes. This is something that I think speaking people do not fully understand. The cost. The cost of each word.
      I am honored you chose to type these words for us to read here. Really. Thank you. ❤❤❤

      • It is thanks to give to you for sharing Emma and her words and to Emma for be willing to share so much. Since can not know in real life other people like me, it is important elsewhere. Online. For hope that is so essential to not going crazy. Alone is it so hard to keep believing self truths.

  27. Pingback: Voice – of Self utterance and familial gossip | bunnyhopscotch

  28. As a parent of autistic children I totally understand. Thanks for posting this and raising awareness.

  29. Hard to know how to respond when someone is coming at you. It’s what I dislike about blogging really. Although I am not widely read enough to have much of an issue sometimes I across people who seem to have willfully misunderstood something I have said and without referring back to me or my writing so people can see for themselves or do something radical like use the contact address on my gravatar to ask they prefer to set me up as some strawman and ram a bayonet through over and over.

    If you were actually speaking for Emma you would not manage to come upon wording that resonate with autistics. You would fall short there however high functioning of an NT you are I think as I have yet to meet an NT even one with a deep understanding of autism that can make our lives reworded in a sense.

    I would have to guess this person is maybe ready for that. I try to go with the least horrible reason.

    I have written multiple times that acceptance is a process and not a one way okay I am done I have accepted my autism but a constant process that can get painful all over again either when problems related to autism are creating some new issues or ones you thought you had moved past or when life gets to a point where while you cannot know for sure what NTs live you think if you were one you would manage a, b or c.

    So maybe some of what you say and Emma says does ring too true for them but rather than let that discomfort be stirred up it is easier to combat you and doubt you. It is sad both ways really.

    I know I suffer from parent envy at times on many parent blogs where I cannot really imagine how much easier my life might have been if I had not felt so deeply convinced that the only way to be lovable was to not be autistic.

    I speak to a lot of autistics in my age range or younger where they did not have love and support for who they are but it seemed so contingent on becoming someone else so it can hurt to read a blog, even if you admire the person’s courage for their honesty and so on where it just hurts that that was not the way your autism was approached ever.

    I don’t know I just prefer to leave open the notion that the person has pain they cannot deal with yet and so applies a level of obsession to not having to but perhaps long after you have forgotten them something they will change and things will start to sink in.

    I don’t tend to be abusive but there were things I did not believe could be true because I had not experienced them when I was a younger woman and there were times when the people who worked so tirelessly to convince me never knew the impact they made because it took decades for all that something meant to work through the internal pain and into my brain where I could finally see I had been fighting a concept because not having experienced it hurt too much.

    So I am more torn than most in being sure this person is an all out jerk and troll as the possibility that the only way he can cope with his own pain is to disbelieve Ariane and Richard’s acceptance of Emma and by extension the things Emma says are real well that could hurt of say you were never accepted.

    The world I live in acceptance is easiest on the net.. The outside world leaves you bloodied and bruised and wishing you were NT so they would not do the things they do at times while hating that you even thought that even if it proves that acceptance is not a one way thing.

  30. Gareeth I agree with you totally that this person’s inner turmoil is so great that he is compelled to deal with it in some way; as such it is obviously easier for him to ‘hate’ someone else, than to ‘hate’ himself!
    However, the person on the receiving end counts just as much too! To be putting SO much effort into helping another human being live her best life possible, which, let’s face it, isn’t a matter of sitting on the couch reading a book, and then to be hated SO much for doing so, is just as unbearable!

    I will take an easy example of myself now, on the matter of taking responsibility! When I was overwhelmed, which was much of the time, I would yell at my husband in order to cope, for years… until one fine day when I commented on a post written by a Life Coach, that I HAVE to stop yelling at my husband! Haha, she said, you are not yelling at your husband, you are yelling at yourself!
    BINGO!
    It’s called projection.
    Naturally I was not terribly pleased to hear that, and although I knew all about projection, nobody had ever had the courage to tell me straight that I was yelling at myself!
    So, I could yell at my husband until the cows came home, to help me cope with (escape) my SELF, but that in no way made it right! Or pleasant!

    This is what my Life Coach said that cut me short and put me on the road to learning about how to love MY SELF (and you know, I was not even able to let those words – I love myself – pass my lips at that stage):
    “…the world is just a mirror for how we really feel about OURSELVES. First try ACCEPTING and LOVING the part of you that attacks, rather than saying “it has got to stop”. When we attack others it is really a part of ourselves we are attacking; we need to see, rather, what it is that is reflected in others, that we do not love in ourselves.”

    Love yourself; you are so worth it!

  31. Oh, Ariane — That’s heartbreaking. Can’t even imagine where they got such hateful ideas. It’s clear to me that your mind, heart and intentions are right where they need to be. Keep on doing what you’re doing.

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