“Talking is Hard”

*Emma gave me permission to post some of what she wrote yesterday during a meeting with a few of the people who are part of her team at her school.

Emma wrote, “Talking is hard because I like to say silly things that people take seriously and that is why I am misunderstood.”

In reply to a question about Emma’s thoughts on another class joining hers for a project they are working on together, Emma wrote, “Worrying that I will not be thought intelligent.  I am considered stupid by people who don’t know better.”

One of the staff commented that the more she writes with them, the more people will understand and know how smart she is.  Emma then wrote, “I know, but it’s hard work for me to write.”

This is something I think people may not fully appreciate – that communicating is tough and hard work for Emma.  It isn’t that she doesn’t want to participate in discussions or want to express herself and have conversations with people, it’s that what most of us take completely for granted is, for Emma, not easy and requires tremendous concentration and effort.

Someone else mentioned how Emma understands everything that people are saying and Emma wrote, “People think I can’t understand what they say, but my hearing is excellent.”

And a little later Emma wrote, “I know people don’t mean to be cruel, yet they are when they see someone like me.”

One of the team wanted to know if she was referring to specific people and how she deals with them.

Emma wrote, “They are everywhere.  I try to like them anyway.”

Before people comment on this post, protesting Emma’s words and insisting that people are basically loving and kind and that Emma must be unduly influenced by me, to write such things, I will tell you that from what I’ve witnessed when with Emma – people typically talk about her right in front of her, talk about her instead of to her, do NOT presume her competent, treat her as though she were at least eight years younger than she actually is, and though they may not mean, intend or feel they are being “cruel” this is the word Emma chose to write.  I cannot, even for a moment, really know what it is to be as intelligent as my daughter is and regularly treated as though I were not.  I will just add here that Emma is far more compassionate than I am.  So if anyone is being influenced, I hope it is me being influenced by her.

And for what it’s worth, this is what I think about all of this…  I think human beings tend to be neither saints nor evil, but that the vast majority of the human population has ingrained knee-jerk responses toward those who are different from them.  It is rare to find someone who does not hold some degree of prejudice, often without realizing it.  I believe most people, often unconsciously and without meaning to, respond to people who are different, whether that means their skin color, their accent, the way they dress or look or behave, with either fear, irritation, curiosity, jealousy, impatience or pity.  It is actually quite rare for a person to treat ALL humans they encounter with respect and as complete equals, without any trace of “othering”.  I believe segregation breeds “othering” and that an inclusive society of diverse people is the ideal, but that’s another series of posts.

Emma

Emma

60 responses to ““Talking is Hard”

  1. So eloquently put, both of you. Ariane, I’m so glad you proactively preempted any comments about “turning the other cheek”. Those of us who don’t experience the kind of prejudice Emma does need to sit still long enough to hear what she’s saying without trying to deflect or re-interpret it. Yes, it probably makes us uncomfortable, but that’s nothing compared to what Emma experiences. The ability of non disabled people to listen and really hear this provides the only hope we have for change. Thanks for this post, and for sharing such sensitive insights, Emma and Ariane.

  2. Thank you Emma,

    my daughter just turned four and start talking not too long ago. Lily is autistic. We were talking about children riding bikes to school. She got really upset. Lily said to me crying:

    – My pink bike is broken.

    two years ago her favorite bike was thrown away. It was indeed broken but we had never talked about the bike because Lily didn’t talk at all…

    The bike was fluorescent pink.

  3. I have been meaning to say this for the last few posts….
    WOW…..
    Don’t know what else to say…. Other than I am so glad I found your blog.:)

  4. I think those who would assume that Emma is being influenced by you rather than simply remarking on her experienced reality are exhibiting exactly the kind of cruel attitude she’s written about.

    Instead of looking for excuses to dismiss kids like Emma, we should be examining our actions and attitudes to see if we’re the type of people they’re talking about.

    The answer to that is probably.

    People think that you have to be some sort of caricature of sadism – a Snidely Whiplash or, in more sophisticated media, a Joffrey Baratheon, to be cruel. Most people who are cruel aren’t being cruel because they’re evil or take some sort of pleasure in it. They’re cruel because that’s what they’ve been taught to be by parents and friends and family and culture.

    But to be able to stop being cruel, you have to first recognize that your actions are cruel. And that’s a lot harder than most people think it is when our culture not only turns a blind eye to such cruelty but in many cases seems to build its values upon it.

    • Thanks so much for your insightful comment. If you don’t mind, I’d like to repost the last two paragraphs to my FB page 🙂 People really need to read this.

    • Such a great comment ischemgeek. Really appreciate you writing this here.

    • “People think that you have to be some sort of caricature of sadism – a Snidely Whiplash or, in more sophisticated media, a Joffrey Baratheon, to be cruel. Most people who are cruel aren’t being cruel because they’re evil or take some sort of pleasure in it. They’re cruel because that’s what they’ve been taught to be by parents and friends and family and culture.”

      Yup. A lot of the time, when self-advocates talk about the harm that parents can do, people get indignant and blow us off like we’re calling them, personally, some kind of cartoon child abuser. And that’s not it at all. It’s that practically *everyone* in this society has learned and internalized attitudes and beliefs about autistic people, and about disabled children, that are dehumanizing and harmful. Even if only subconsciously. And when people act from those unchallenged beliefs, they’re perpetuating immense harm against autistic people. Even when they *intend* to do good.

      And a lot of those beliefs seem benevolent and benign on the surface, but have the effect of robbing someone of the chance to be the primary actor in their own life.

      • Yes, exactly! Benevolent ableism is a thing that’s harmful just like benevolent sexism is a thing that’s harmful. If you rob me of my agency and right to self-determination, that’s harmful as hell, even if you’re doing it with good intentions.

        I find it hard to tell the difference when someone refuses to let me do a dangerous reaction at my work because I’m a woman or because I have asthma or because I’m autistic. The end result is the same: Because of factors that have no relevance to my competence, you feel like you’re more qualified than I am to judge what I can do and should be doing.

  5. I don’t doubt Emma’s perceptions of people for a moment and I was surprised that you felt the need to caution people against assuming your influence was responsible for her feelings. But then I read the rest of your thoughts and remembered that, yeah, not everyone shares my experience of being treated like I’m less than competent because of how I present. I hope Emma can hang on to her compassion as she grows older. It must be very difficult to be talked over and about and around but rarely to by so many people.

    • Thank you, I think I am doing it to my child out of the habit. Hopefully I’ll be more aware from now on.

    • Yes, what Musings said. All my life, I mostly get treated two ways: like I am unintelligent until someone sees a test result or something I’ve written, and then frustrated and pushy afterwards, because I’m not “living up to my potential.”

      Even my own mother, who knew I had high test results and could read from age 2, was shocked the first time I emailed her, because with my dysgraphia and not being allowed to type as a child, she had never seen my writing until I was in my thirties and sent her an email and she saw that I actually could write, after all. And fairly well, at that.

      I’m so used to being talked to like a child. Just because people are confusing to me doesn’t mean I’m still a child. I’m an adult who just doesn’t understand a lot of the ways the people around me interact and isn’t always sure what people want or expect from me.

    • Musings – It was interesting that half a dozen people felt strongly enough to contact me about the post in which Emma wrote, “take time to try and learn from us instead of staring at us like we are garbage.” I was surprised. What I came to realize after more reflection was that it makes some people really uncomfortable to hear how someone, especially someone as young as Emma, suffers. Instead of listening and considering her words, they’d rather deflect, dismiss or rationalize them.

  6. “It isn’t that she doesn’t want to participate in discussions or want to express herself and have conversations with people, it’s that what most of us take completely for granted is, for Emma, not easy and requires tremendous concentration and effort….. …….
    “They are everywhere. I try to like them anyway.””

    That what Emma and you her family are together doing, is the crux of thing; is the primary matter.
    Autistic speaking is demanding because, to be done well (as Emmma succeeds in doing, and that because of the phenomenal integrity of her person) it has to parse and articulate everything a few degrees different from socially-grounded and society-mediating parsing and articulating. Autistic sensing feeds autistic cognition, and yields an autistic view of everything; an autistic viewing that differs from any social/societal viewing.
    To have and retain integrity, and this central to developing, you have to remain true to your senses and cognition, and have to do that in realtime expressing to and interchange with others. Autistic sensing and cognition yields autistic self-realisation when this goes well. Self-advocacy allows for authentic self-realisation; and authentic self-realisation begins to reshape the world to accommodate you.

    When an autistic Emma offers the pearls of her autistic sensing and cognition and integrity to others embedded socially and societally, they might struggle to recognise and make use of these pearls. The ins and outs of that, as it makes itself known to Emma across intersubjectivity, is something she must parse and articulate perspective about. Ariane well-flags what Emma there does, as “compassion”; compassion in the face of not being seen as who she truly is.

    Ariane then steps in to empathetically share burden in this with Emma. Ariane parses what is presenting itself intersubjectively around Emma, and articulates perspective on it, to her own personal limits. What she does mirrors to Emma across familial support of her; Emma drawing on what is involved in Ariane’s efforts.

    “Talking is hard.” Parsing what you find yourself embedded in, when autistic, is hard: hard beyond personal capacity; always tending to be overwhelmingly hard, always tending to be done only on the limits of personal capacity.
    Talking out of being autistic is hard. So hard that only a community can approach the doing of it; and even then only at the limits of that community’s capacity.
    Emma is then phenomenal, because taking in all that surrounds her in the doing of all this, and integrating it all organically as the wonderful, hopeful, compassionate person she beautifully is.

    • (((Colin))) thank you so much for this. (I hope you’re okay that I went in and edited the spelling of my name – you’ve spelled it with two “n”s and there’s only one) I know, silly me… 🙂

  7. When people are unconsciously cruel — when they feel that they have good intentions but their actions are at odds with this — they are often hard to convince of the fact. Unfortunately good intentions are not enough on their own and it also necessary to have understanding and compassion, to listen, and be willing to admit error and be corrected.

    I agree with you that most people have some prejudices and preconceptions that they may not even be aware of. Habits of thought are a result of the influence of parents and peers, of the society they exist within. For Emma to display such patience and compassion suggests to me a positive influence from her environment, from her family and mentors. I believe you influence her by being good examples of loving, compassionate people. Love begets love. ❤

  8. Emma: “I know people don’t mean to be cruel, yet they are when they see someone like me.” “They are everywhere. I try to like them anyway.”

    You are a far more advanced, intelligent and compassionate person than I am, dear Emma. When I see someone give you “the look” I don’t even try to like them.

  9. Beautiful thoughts – from Emma, Ariane, musingsof…, and colinb…everyone else too.
    I think people would only question Emma’s statement because it’s uncomfortable to be in the position of needing to examine one’s behaviors and be found wanting – or to automatically feel guilty. Being human is often about realizing that mistakes are inherent to the condition!

  10. I’m sure there are ways im cruel all the time completely unintentionally 😦 work in progress here…but thanks Emma for working so hard to tell me how to help

    • The other day I went to the store, I was thinking about something else, I wasn’t paying attention, I didn’t look at the cashier, didn’t thank them for ringing my purchases up, didn’t say anything at all, just walked away, but as I left I saw the look on their face and only later, thought – wow. That was so incredibly rude of me. I could have smiled, said hello, how hard is that? And if the person before me did the same thing and maybe the person after yelled at them about something else… it all adds up, all the little things all day long can start to feel like an assault… So yeah. This is all a work in progress and definitely something I try hard to be aware of, but I know I have done and continue to do stuff all the time that, were I more conscious, more considerate, I would do differently.

    • We’re all works in progress! I’ve apologized so many times to my son, explicitly, for mistakes…!
      You’re not alone, and realizing that we can do better is a big part of the battle.

  11. Thank you to Emma for reminding the rest of the world that although she can’t talk, she can still hear. My nonverbal son is subjected to this all the time, and largely by professionals, who I would expect to know better. Although, I must admit, that I have made mistakes along the way, myself. I had had a lovely exchange with an Autistic child, who I didn’t see again for several weeks. When I saw him again, I immediately took his hand to say “hello”. I realised, after the fact, that I should have been more respectful of his boundaries; I realised, after the fact, that I would not have taken the hand of any other child. It was presumptuous of me, and I would not do it again. Sometimes, it would be helpful if other parents/carers could take us aside when we unwittingly make these mistakes. I think Emma is very brave for speaking up, and explaining to others how their actions affect her and make her feel. I think in order to follow her model of compassion, I need to remember my own blunder, which was not coming from a place of cruelty but of inexperience. Something to think about–thank you Emma and Ariane!

    • Merry, I think that is often the case, not knowing, misunderstanding, inexperience… I don’t think it’s possible to go through life without having made mistakes or said things we wish we hadn’t.

  12. I often wonder why people think it is OK to talk in front of those who we presume don’t understand. We don’t talk about the deaf in front of them, do we? That would be considered rude. Why isn’t it considered rude to talk about non speaking people in front of them?

    • I think it goes back to the stereotype of the ‘mental age of a child’. I’ve seen it so often with young children and their voices being ignored. In fact when I used to back carry my children, i noticed that when they were at adult eye level, adults would include them in conversations, when they were strapped in a buggy, the same adults would completely ignore them.

      I think something similar happens with both nonverbal people and wheel chair users and it’s possibly all part of the ‘less than human’ prejudice.

    • Glad you mentioned the deaf. My sister is 95% deaf and very smart. People have always ignored her and talked as though she was not in their presence. When people have a disability which makes them less or non verbal and less social, they are assumed not intelligent. People are impatient and demanding with the deaf when asked to repeat or speak more clearly. I experienced this layer in life when I lost some of my hearing. You never know what it is like until you walk in the other persons shoes. Thanks to Emma for showing us a window into her world. I hope it will help my grandson who is autistic.

  13. Sadly in this case, I don’t doubt what Emma says at all. I remember being her age, and not even recognized (formally, at least) as disabled, and yet people infantilized me and disregarded my capabilities *all the time.* And most adults denied it was happening.

    • And that denial only adds to one’s pain. I’m sorry you were able to relate to Emma’s words. It’s horrible that she feels this way and that so many others can understand just how she feels.

  14. Sorry for the second post, but I just saw this online: https://www.facebook.com/media/set/?set=a.652490801458901.1073741828.177548032286516&type=1
    I’m not suggesting that anyone needs to do this for our kids, but I thought it was a unique way of spotlighting inappropriate comments. The article is here: http://shine.yahoo.com/parenting/kim-kelly-wagner-photo-series-girls-adopted-china-191940669.html

  15. “They are everywhere. I try to like them anyway.” She truly has the most beautiful soul.

  16. I agree wtth everything Emma is saying, from my own personal and still current at the age of 52 experience. The only difference is that i managed as a child to use my NONverbal Autistic gifts to first CONSTRUCT the ability and then LEARN AND MASTER the art and science of expressing my NONverbal consciousness and intelligence in words. In context of thiis, where Emma is treated as being 8 years YOUNGER than she is, i have spend my entire life being treated as at least 8 years OLDER than i am, and therefore VASTLY more competent in some areas than i actually WAS or AM…. and this started in VERY young childhood – ALL in context of my Autism NOT being seen for what it was then and is NOW.

    I do not know what it is within verbal nonAutistic people that makes it POSSIBLE for them to abuse people like Emma and me in the ways that they do. I DO know that it is a HUGE threat and OBSTACLE to our independence, and ULTIMATELY to whether we are even ABLE to remain ALIVE in this world.

    I am currently facing the very real possibility of losing my life – very likely as soon as in the next couple of days. I REALLY hope for Emma’s sake that by the time she is an adult, the NT world has found a way to ACCEPT people like us as the WHOLE HUMAN BEINGS that we ARE, who simply HAPPEN TO HAVE DIFFERENT WAYS OF NEEDING OUR HUMAN SUPPORT NEEDS MET.

    I am truly happy for Emma that she is still managing to be in the flow of Love that she IS – and i REALLY hope that people realise soon for her sake that LOVING OTHER PEOPLE SHOULD NOT BE THAT DIFFICULT. It’s not our AUTISM or even our NONverbal way of being that causes us to be isolated from the world… it is simply the belief that because we cannot speak we have nothing to say – and if we DO express ourselves verbally, whether by speaking or typing or any other means, that we are either not who and what we have made IMMENSE effort to SAY we are, OR that now that we can VERBALISE OUR OWN NONVERBAL EXPERIENCE we are now the ‘verbal people’ we are then ASSUMED to be.

    VERBAL expression of NONverbal consciousness and intelligence is A GIFT TO THE WORLD that NEEDS to be RESPECTED AND APPRECIATED FOR WHAT IT IS… the reaching out of a consciousness and intelligence in some ways VERY DIFFERENT from yours, yet in some ways EXACTLY THE SAME.

    I hope that my death will bring what my life apparently could not – awareness and understanding and compassion and acceptance of NONverbal Autistic consciousness and intelligence as something to WELCOME and CELEBRATE as a much-needed Presence ini this world… It is what i have worked my entire life for SO THAT OTHER NONVERBAL AUTISTICS LIKE EMMA will NOT have to suffer like i have and still do.

    • Ama, I don’t know why you anticipate your death, but I am very grateful for your life, and for your words. I am just a few years older than you (55), and I know that when we were children, a non-verbal individual was presumed to be of low intelligence. Very obviously, that isn’t true of you. Your words tell me that you are intelligent, sensitive, compassionate and aware. Whomever has told you otherwise, whomever has treated you otherwise, has been profoundly wrong. Your writing is brilliant, powerful and very moving. If a cyber-hug does not encroach your personal boundaries, then consider yourself hugged, cherished and treasured, not only for your wise words, but for the heart that has not shut itself off in the face of pain.

    • (((Ama))) “I am currently facing the very real possibility of losing my life – very likely as soon as in the next couple of days.” What can I do to help? I don’t know your circumstances, but your words concern me.

  17. I don’t understand people being threatened by what Emma has to say unless they are guilty of treating the autistic badly. I don’t get threatened; I get angry on her behalf because the idea of anyone being cruel to someone so intelligent and compassionate isn’t fair at all.

  18. Martha Hainey Flacke

    As a Speech-Language Pathologist, I share your blog with all those I work with , especially the college clinicians, as I think they often forget the “truths” that Emma speaks. Day after day, I tell adults not to talk about but rather to the children in our classroom. An inability to verbalize does not mean a lack of intelligence or deafness. Thinking before one speaks is so important. Thank you for sharing your very special young lady with all of us.

  19. Goodness. I seriously can’t believe some people are living in a dreamworld where people aren’t condescending to children, or the disabled, or the different. I’d love to know where that planet is!

    I believe MOST people are decent, and are perhaps unintentionally sticking their foot in their mouths/being condescending – and hopefully they’ll listen and try to do better in the future. But to think that everyone out there is a fluffy pink cloud of nice and that your daughter is imagining things or influenced by you is mind-boggling.

    Thank her for her words, and you for sharing them with us. With each of us working on changing our little piece of the world, big changes will come (but it’s never fast enough, is it?)

  20. To Emma:
    I’m sorry that people are like that. It shouldn’t require feats of great energy to be treated decently.
    Mandy
    [I met you at Autreat but I was interacting mostly by sitting near people.]

  21. Dear ariane, I have been reading your daughter’s recent postings and thinking about the transitions my daughter is experiencing. The more my daughter becomes aware of, the more she becomes aware of . Not only is she expressing her thoughts, as she has for a few years, she is now questioning many assumptions around her. There are many days now where she is actually experiencing a event as if it was the first time for her…and technically it is. The first time she is able to communicate thru it. You wrote of PTSD yesterday. I know my daughter has this, and I have had the opportunity to assist her thru the panic as she works thru a familiar feeling, typing and easing her panic.
    My daughter now has a real friend, same age. I say real friend because she challenged her after she read Judy endows blog about friendship. This incredible young lady asked my daughter, how can I show you I am your friend? My daughter started to cry and typed she was weeping tears of joy.
    They are typing together now.
    It has been a full 3.5 years since my daughter began to talk with her hands. We have begun rpm, slowly on our own. She likens it to learning another language.
    I am enjoying learning from your daughter.

  22. Oh, the talking. The talking is hard. And the writing. The writing is hard too.

    After all that effort to find the words, to make them come out in the way that you intend, or close enough… to be told that you can’t actually mean that, or that what you said was wrong or distasteful. Or that they’re not really your words at all, but your mother’s words, or your aide’s words.

    Can we as a society really not see how much that HURTS?

  23. This reminds me of post I wrote long time ago, about extraordinary experience of being treated as a normal person would be. Since am nonverbal (non-speaking, difficulty typing, mostly am use pictures) it is also for me very hard to communicate. Am usually to stay silent because it is too hard. I have devices that talk for me. But. Those only makes it not impossible. Those it does not make communication easy.

    Post is here: http://pixiebluesky.blogspot.com/2012/07/new-wetsuit.html

  24. You know, Ariane, I’ve been thinking a lot about this post. My son has an appointment coming up, where he is going to receive a prelimiary assessment for ADHD. The more I think about it, the less comfortable I am with the idea of discussing some of Declan’s characteristics in front of him. I’ve never been entirely comfortable with it, and this time I think I’m going to draw a line in the sand and insist that he be evaluated another time (after his father and I have aired our concerns). You never know. If parents begin to push back, maybe people will begin to treat our children and their adult peers with more sensitivity and respect. I think it’s time.

    • When my partner accompanied his son for his preliminary autism evaluation, on my advice they spent some time beforehand talking about what questions the therapist was likely to ask. My partner made sure to explain to his son that in order to get evaluated, they would need to highlight the problems and differences, even though that might hurt and make his son feel like there was something terribly wrong. He said, “It would be the only way to get further help, because therapists don’t think there is any need if I tell them how awesome you are.” Afterwards, his son said that he didn’t feel hurt by any of the things that were mentioned, because they were true even if they weren’t always nice to think about.

  25. “They are everywhere. I try to like them anyway.” So do I Emma. People are cruel to people who are different because they don’t understand us but I want you to know something you are perfect just the way you are there’s NOTHING wrong with you.

  26. “Worrying that I will not be thought intelligent. I am considered stupid by people who don’t know better.” Please tell Emma she shouldn’t worry about that because there are plenty of us out here who know otherwise! She is very intelligent!

    “I know people don’t mean to be cruel, yet they are when they see someone like me.” I truly wish people wouldn’t talk down to, about, ignore, stare, etc. just because someone has a disability or is different from another. That infuriates me so much! It IS cruel, whether they realize it or not. I agree with Emma!

    “They are everywhere. I try to like them anyway.” Miss Emma has much more tolerance and compassion than do I. It annoys me to the point that I would like to say or do something (and many times do open my mouth). I definitely don’t like those people unless they change their ways! Much love to you, Emma, for being such a beautiful light in this world!

  27. what i know to be true:
    1. az, you are one of the most compassionate souls living
    2. em is influential by design and her time is now
    3. pity is rarely benign
    with love b

  28. It is heartbreaking that so many people cannot see beyond the surface to a person’s soul. How many lovely little beings are there just waiting to be found.
    Emma is such a lucky girl to have so many people who do understand her and love her and encourage her. Autistic people need others so much more than most. There are so many things hidden inside us that only love can bring to light.

  29. Pingback: proof | a diary of a mom

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