Wednesday, November 16, 2011

Struggling Against Attitude

I live a surreal life in Autismland. I work so hard and I struggle all day to manage daily in school. Still, I struggle to be welcomed. I push against the door to be let in to have a decent education, but I get in and find I’m still stuck outside. What do I mean? I mean it’s not easy to struggle against attitude. Maybe I need to develop a sense of humor about it. Maybe I’m too sensitive for my own good.

I gave a talk yesterday. A lot of my writings were read. In the Question and Answers at the end a nice lady asked if I really understood everything. Then after she was told yes, she incredulously repeated, “Everything?” The funny thing is, if I write smart ideas I must understand English, right? In the moment I felt mad, I must admit, but now I don’t. I believe she expressed the doubt of many, actually, especially if she is a special educator or something like that. I’m sure I don’t fit the model that people expect for a limited-verbal, hand-flapping oddball. Ha ha. I laugh at myself too.

I have to assume that I kind of challenge assumptions about autistic people. I have to prove to people over and over that I really am communicating. They stand next to me, or behind me, or near me, and watch me type or point on the letter board. They find I move my own arm, react to their questions, and communicate for real. How many people have I done this for? OMG, it seems like thousands, but it is only dozens and dozens and dozens and dozens…

They are professionals, and parents, and friends of my parents, and I have to prove myself to everyone so they know I am smart. I get it and I accept it. Maybe I need to get a movie of me typing we can put it on an i-phone and show them. Then I won’t have to be observed like that. On the other hand, it is fun to see their skepticism vanish. I have sat with medical doctors, neuro-scientists, psychologists, and skeptics of all kinds. After a few minutes they stop doubting and I can relax. I suppose I need to laugh, but it’s the people who assume I don’t communicate or don’t do my own work that bug me most of all.
OK, that’s my rant for today.

7 comments:

  1. Hi Ido. I am wondering if you were referring to the woman's comment at Temple Etz Chaim. I'm thinking you were. It's funny that you would write about that because after we left, my husband asked if I thought you were upset about that. He thought you would be. I said I wasn't sure but maybe. So, now we know that you were, but you also understand it. My husband is now writing the following: "First of all I would like to thank you for sharing your frustration about being captured in a world where you are not seen as equal. I hope you have patience with us, i.e. the adult world who cannot see beyond the surface. I hope and wish that technology will enable you and your peers to communicate with the rest of us, in a easier way. Thank you for coming and sharing a glimpse of your life with us. It was very enriching and inspiring. B'shalom, Benny Sommerfeld

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  2. I was there tonight to meet you. I was that lady who asked the question that angered and frustrated you. I am so truly sorry. You taught me so much. You are a inspiration. Seeing you changed me in many ways and for that I am so grateful. You are a brave man to share your story, but what a gift you have to offer. You will make a difference in this world. There are many like me who can learn so much from you. You have such a gift to share and I hope you will continue to educate the people like me. Ido I am truly sorry. I will keep you in my heart as you travel this frustrating journey that your on. I so admire you. thank you for a valuable lesson.

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  3. Ido, your writings are always just what I need to keep moving forward on this journey. However, I must say the the two previous comments have really moved me. I want to thank them for being honest, and willing to admit that seeing one thing and believing another is so hard...particularly for us as adults. It is so hard for you to prove yourself over and over again, but every time that you do, you move mountains. I am inspired to face my day...thank you.

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  4. Ido, I sent you blog website to my friends and one of them wrote me back to ask if you have a youtube video of how you use your letter board. I would also very much be interested in seeing that. So, please consider putting up a video of you doing that. Thanks. Your writings inspire me.

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  5. I also want to tell you that I really like how you organized your website. It's very easy to move around to different pages and is easy to follow. Shabbat Shalom.

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  6. No worries. I'm not mad that you wondered. It's understandable, if frustrating.

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  7. I am learning so much from your blog. I have already passed on the link to a friend whose daughter is non-verbal and I think it is giving her hope and understanding. I think you are like Hadassah (Esther), raised up for such a time as this. You are a hope-giver.

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