‎”It is just a Google search away”

A personal point of view on ‎technological accessibility

  1. The other day, I talked with my mother about a birthday gift to my father. We were walking around the neighborhood in a hot summer evening. She told me she was going to buy my father a new iPhone for his birthday. Recently the screen was broken. I asked her why specifically an iPhone. She explained about the ease of migrating files from iPhone to iPhone. “Oh right!” I exclaimed.” It is the same with Samsung. I understand.”
    I lost my phone a year ago, and it was one of the reasons I chose the same producer again. It also has a good Text to Speech and screen description features that I find very useful. But my mother continued: “And iPhone has Siri. He loves it! It is so useful to him. He asks it ‘what is the weather tomorrow?’ or for instructions, for internet searches. It is so easy to him this way.”
    I was touched. And a core feeling in me said “Oh, this is accessibility issue”. My father is a beekeeper. The weather is extremely important factor in that. He has some hardships using the phone the “standard” way. Siri made the phone more accessible to him. He could do it in his native language. Siri understands and talks in Russian very well.
  2. I have experienced some loss of memory and cognitive abilities around 2.5 years ago. I was having memory problems, which were made intolerable under some medication for my ISB. I forgot a lot of my life. I forgot things that just happened. There were huge holes in my memory. I would forget why I opened a door, a cupboard. Why did I go out the door? I work in a laboratory. Those problems are big problems. At first, I coped. I had a number of coping mechanisms I picked over the years, or developed with the help from a program I am in for disabled through the social services. I stopped that medication. I had a big bad self-harm session sometime around that all, and I thought that the damage finally caught me. Things got a bit better after I stopped that medication, but they didn’t go back to normal.
  3. I was worried about the memory loss, and the hardships are an ongoing challenge, so I started another medical investigation. I got a CT done, and a battery of tests to test the changes in my memory.They were hard to measure, although I had some psycho-diagnostic and psycho-didactic tests some years before, I do relatively well in tests. This is uncontrollable. If you put a test in front of me, I will try to do it as well as I can – in any cost. Since high school I was frequently coming out of the test shaking. My brain were usually going to overdrive. I would be extremely drained. Put a hoop in front of me and I will jump before I understand what is in front of me. You had to see me struggling to remember all the words the tester just said to me, while I did a second battery of those. I tried so hard! I felt that I can’t but try my hardest. But those tests are not like life. I can’t use that amount of effort for this long. I wouldn’t be able to hold on this much. In the end, it was concluded by the professional with whom I talked with that the reason for the problems is psychological. I think there is some truth to that. But my memory problems are still there. And another one: I forgot how to use search engines properly.
  4. I still knew the technicality of the use. I knew how to type words. I knew I had to put words and press “search”. But I started to struggle to find what I was searching for in my searches. I couldn’t find the right words. I could articulate them to a person, but when I typed them, I was not getting the relevant information. It wasn’t always the case, especially not for simple searches, but when it came to anything more than surface level information, just…wasn’t working. I was trying to change the words and still getting irrelevant results. I started to feel like I don’t know the right way to talk to the search engines. I knew that I have to type, but I didn’t knew what words will work. I felt like my words stopped working for the engines. I didn’t knew how to Google thing properly. I felt so much shame. When people around me said “educate yourselves. Everyone can use Google!” or “It is just a Google search away!” I felt pain. I was also for a time a bit like that. A long time ago, during my failed nursing education, I was the best in using Google and computers around. I wasn’t especially good at it, I never was very good with computers, but I knew my way around a bit more than the people around me in those days. I was around people who were good with computers, and some of it rubs on you. You learn to read the manual, address the FAQ, you observe some of their tricks. I even got a nickname around it, which I disliked, but also was a bit amused by. And suddenly – I forgot how to do some of these stuff. But now the world is different than it was 10 years ago. It is funny to think anybody ever called me “Bob the Technician”.

    Bob the builder.jpg
    Bob The Builder. Source (WP:NFCC#4), Fair use, Link

  5. For some time during the last year, I was actually afraid of using the computer. It sounds silly now, but I was. The phone was relatively fine. Using the computer at work for work stuff was also fine (I don’t use it much anyways). I was just afraid of the computer. I was afraid of being stuck in front of it. Which happened in the past, and is a tendency that I have. I worked specifically with my psychologist on that fear, and did a small change in my working area that allowed me to get out with more ease. I built up with using it. I started with playing The Sims Medieval, which has very closed missions that are relatively short, and can’t be prolonged too much. Later I discovered the wonder that is “audio description” on Netflix. For the first time in my life I could understand why some scenes were funny, because now there were a voice saying “She frowns” to what was a blank expression to me. I prefer cartoons because I have hard time with facial expressions. I didn’t knew I was missing them sometimes even in cartoons, till I watched them with audio description. This is the first long text that I type on my computer, in a long time.
  6. At some point, I understood that I can’t go on like this. I have to get better at using search engines. It might not be easy, but I have to do it. I reached out to my friends, and got some pointers. I decided to start right away. My first searches were about how to use Google better. I didn’t find what I searched for, but I still, I tried[i]. I have to push myself to do searches nowadays, but it seems like the pointers were good, and I can use search engines to some capacity. But I am still not good at it. But I try more now. It is hard for me because English is not my native language. Google doesn’t understand Hebrew very well and I read really slowly in Russian. But I was inspired by the words of my mother about my father, and started talking using Google assistant more. Usually I ask it to tell me a joke; Google assistant has different kinds of humor in English and in Russian! But I also found that is a bit easier sometimes to ask Google like it is a person, and sometimes it find the right information. I am not as fluent as I was before, but I found coping mechanisms.
  7. One of the points in the way of using search engines was always hard for me, is the issue of translating thoughts to words. Especially non – verbal thoughts. I frequently refer to writing as “drawing with words” because it feels similar in a way. I use my markers to put colors on a page in patterns that are seen as other things. You can see it is a drawing, but you also see the ideas depicted. I can put words one near the other, and depict ideas. But it doesn’t exactly work like that in talking to others, even when done in writing. My ability to draw a picture or a story in words doesn’t fluently translate to my ability to speak or have a conversation. When I draw with colors, it is also unlike drawing with words. It is also unlike speaking. And sometimes I have a concept in my mind that I don’t know which worlds to use to describe and ask about. Sometimes I don’t know what is it called, or what words to use. Sometimes I have way too many words, that don’t mix into a question that I can ask. I can describe the issue, but only in many words or feelings. Sometimes I just don’t know the words because of language barriers. I still try to push myself more into using search engines. It is hard, but I know I have to make effort. But when someone says “just use Google”, I feel a prick of pain and shame. I don’t say anything, but inside me, I know it is not always easy.
  8. Recently I found a YouTube video where the host actually showed how he searches Google to learn about a topic. It was a bit mocking at points, but the demonstration actually helped me. The hard time I had was that I wasn’t even familiar with the words that he used in the search. I know that I don’t always try my best. Sometimes I choose what is comfortable. I am very privileged to even be able to write about it. I have a phone, a computer, and internet connection. Technology comes at costs we don’t like to think about, and intensifies the power of those who hold them[ii]. Still. I am happy to see the technology becoming more widely accessible to its users. Navigation apps are a great tools for people who struggle to navigate around them. The navigation system will show them the way every time, never to get angry or impatient because of a wrong turn. It will find a different route. It doesn’t matter if they don’t remember the way or get confused easily [iii] – If they can use the satellite navigation app on their phone, it is very likely they will get to their destination.

[i] ‎(One friend told me something about algorithm change that happened some years ‎ago, but all I found was changes for website owners, nothing about user experience.)‎

[ii] But this is a different conversation, and a topic I don’t know enough in to talk about it.

[iii] I am don’t struggle with navigation, but I have my weak spots. At times I was too confused or dissociated and made some questionable bus choices. There are buildings that for some reason, some parts of them just flip around my internal compass (I sort of feel directions?), and it is flipped quite easily.

Dead people can’t talk

I know this sounds weird, but I *know* that some of my parents (I have more then 2, it’s a ussr cultural thing) whold prefer me dead over being me.
This way they will have the absolute control over me.
A dead person can’t say anything about themselves or disagree. You can tell whether you like about them, and they are dead, and can’t say anything. 
A dead, NT, cis, straight, monogamous person is way better when live me.
It breaks my heart to know that I will never be loved and accepted by some of my parents.
But I am an adult now. I don’t need them anymore. They never wanted Me anyways. Not if that “Me” means being the freak I am.

It is easier to bury your child under the name they chose when to accept and love them while they are alive, like what happened to Vered.

If I die today, I don’t know who will decide to bury me and under what name. It doesn’t matter anyway, since my legal name is my previous name.

I whold be buried with some stories that They will control.

I am not going to die soon, if I can help it.
But who will care that the people who raised me did things to me that are illigal to do to prisoners? No one cared when I was 16. No one cares now.
I am expected to forgive, to pretend that things done out of love are always good. To be thankful for those things.

My story was never mine to tell. My body was never mine to own, and others always knew better when me, even when I begged to stop. But hi, at least I wasn’t raped. 
And not sexual abuse is not real. No scars? Not real. Told to beat myself with a belt? LOL, what a crazy story. Totally unbelievable.

Years upon years of force feeding. Not an abuse, but love.

Family is not a word with positive meaning, at least, for me.

Why there are more identity labels?

A Hypothesis about the empowering rule of search engines and internet based communities.


When I was younger I rarely heard about LGBT identities. I heard about the idea of trans women thanks to Dana International, the winner of the Eurovision Song Contest 1998 in Birmingham with the song “Diva”. I was a kid in the late 90’s who’s family rarely watched TV in Hebrew, yet I somehow heard about her. I started *actually* using the internet only around 2002, and even then, I wasn’t very good at it (I sort of grew up in a cult).

Lots of things changed since these days, one of them beng the availability of the internet. At 2002 I became a forum member about Digimon, which was one of my obsessions. Digimon opened me to Anime in general, and the people in the communities I was in, including Digimon, opened me to new ideas about gender, sexuality and life. I was 14, and Digimon was never really popular in Israel, and was considered a “Pokemon knockoff”. Also, it was considered a thing for little kids. I found there fan fiction and fan art dealing with issues like love, sexuality (including not hetero sexuality), astrology and abuse. It was the first time in my life I found a community of people who liked the thing I liked, and were ready to talk about it seriously.

Later in life (2010) I became an admin of a similar forum about bisexuality and other multi-attractions. Before that I never had a place to talk about my attractions and to learn about all the the different identities under the multi-attraction umbrella.

The Bisexual* Umbrella Model by: Shiri Eizner

The forum opened me to the queer community and activism, and since then I learned a lot about myself, including gender, disability and attractions.

The number of identity lables I use for myself now is longer then it was 15 years ago. Back then, I only had uncertain feelings and emotions, without any words. Finding words helped me to learn about who I am. And those words could be used in search engines. And once you have a group of people with search engines, they can find each other. They can search using not specific descriptions, but this is usually not very helpful. But once you find the right words — they are keys. Keys for people finding each other, communities building, new words and consepts emerging, new ideas florish.

All the weirdos, special snowflakes and people who couldn’t find people like them around them found each other. They invented words to talk about similar issues they faced. In groups, humans are stronger and can achieve a lot. Groups of people who never had power before, because they were alone, found it.

I am Bisexual, autistic, trans* and chronically ill. Without the internet, I couldn’t talk to most people in a way they understood me. I couldn’t find people who were similar to me in their experience, so I could learn from them. Before I learned to use the Internet (it took me a long time, even as a teen), my knowledge was confined to what I could find in the library, see on TV on the rare occasions I could decide what to watch, the radio (which I never controlled) and newspapers I found.

I sort of grew up in a demi-cult, and being autistic ment even harder times to find other points of view, and additional words I didn’t knew about, because there were no communities who talked about those things.

We are living in a times of great change. People can whine about how special snowflakes like me are ruining everything. It is because, for the first time, we found friends.

Not all aspects of the change Internet brought to our lives is good, but I welcome this one.

☆☆☆

In memory of Vered Fireberger, a poet, chosen sister and an activist, who died because of untreated post trauma and institutional transphobia.

Why I don’t join the Medium Payment Plan?

It is not probebly why you think.

Easy. I can’t. It is not available in my country and this is the only place that I have a bank account in.

I actually thought about it a lot, because people do read posts. I get a steady stream of readers for my piece about Anti Noise Headphones.

They don’t pay on PayPal, Or any other platforms that are available as alternatives. Even BitCoin would be preferable to me, but nope.

I am not angry in anyway, but sort of disappointed.

So, I guess my content will remain free for all to see as much as they want, and I am fine with that.

Maybe I should start a KoFi or something similar. What do you think? Do you think my words worth money?

Mother, am I your shame?

OR: I don’t know how to fix the mess that is my relationship with my mother.

A photo of me in my first pride parade, from May 2012. A photo of me, a person who looks like a women with a light skin, with a brown hair that is all frizzy and shining in the setting sun. I have a pride flag and necktie. A bright green (transgender color) whistle around my neck. A words in black with white outline hide my face from recognition. It says “Shameful offspring”.

When asked to describe my relationship with my mother in the last 10 years, I will probably choose denial. My mother is denying so much about me, to the point that I stopped trying to tell her things about me being different from what i was expected to be. You see, if I was straight girl without mental health issues and a history of domestic abuse, there probably would‘t be any problem in our relationship.
The problem is, I am not that person.

I came out of the closet as bisexual to my family and mother, by mistake, at 2008. I was 19. No one will admit they remember it. It was quite a big deal for me, but it all ended with my mother telling me I am too young to know. I shut my mouth. I knew she was wrong, but I didn’t want to “make a scene” and “be dramatic”. I was and am autistic, and my almost daily meltdowns were perceived as me causing drama and searching attention. even when I begged people to leave me alone, while they were shouting at me for crying after banging by head on something. So I shut up. I was grateful that I had a roof over my head. Other queer people were kicked out of their home. I was trying to be happy with what I had. I knew that my family will never kick me out of the house for being queer or get pregnant. I was lucky.

In 2012, weeks after my first pride parade, my mother found out about me going to it. I accidently had my picture taken with a politician (I didn’t knew who he was when the picture was taken). I had no idea anyone will find about this. She was angry at me. She could’t understand why I would go to such event. She was angry when my sister sew me a bisexual flag. No one except handful of bisexuals in Israel knew about this flag or it’s meaning back then. about a year after my first pride parade I left on her desk a pentathlete of a support group for parents of LGBT people. “Why would we even need such thing?” she said and handed the pentathlete “It is not relevant to us”.

Several months after I left my parent’s house and started to live with my partner, I came to visit. I was pressured to try on some clothes that were passed to my family (It is a common practice in our community, to pass around clothes in good condition). My mother came inside my old room, where I went to change. “Why are you wearing boxer briefs? Don’t you have your own underwear?” Trying to explain that I moved to using men’s underwear because it was more comfortable didn’t work. I said nothing about this being also about my gender. My mother was still very displeased with my horrible choice in underwear. And with the fact I didn’t shave my legs. Explaining her that this is also about my gender seemed useless. If she was already displeased about my choice in clothes that no one can see, I knew that talking about me being trans will just cause family drama. I was fed up with drama so I shut my mouth.

It was not like my sexuality or gender were a secret, even when I lived at home. Mother kept talking to me later about trans issues that are “just something she read on some blog”. Her semi liberal yet hateful remarks brought the point home loud and clear, even for me. Me being bi and trans* was a bad thing in her eyes. when I tried to say something about being bi, there was always denial or her saying that it was my teenage way to find attention. I was just provoking people. The problem was that at 2012 I was legally adult for already six years. I was working on my first degree. I was not a teenager anymore.

Between 2012 and 2016 I lived double life at my parents house. I was the admin of a forum for bisexuals in Hebraw. I organized meetups, and even had a girlfriend (and was in polyamorous relationship), without telling anything about it to my family. I went to protests against transphobia. I helped to organize a pride parade and an event about bisexuality. I even spoke on the radio. I had a huge polyamorous drama that ruined a marriage and was overall bad to everyone involved. I was also suffering from depression, constant anxiety and C-PTSD. I lost interest in life. I hid it as well. I hid it because when I was 18, and drew sad drawings, my mother became angry with me for drawing sad stuff, because “it reflects yout inner world.” Her words, not mine. so I hid my drawings as well. Everything was secret, because I knew that if I will tell anything, all I will get is anger at me, shouting and denial. I hoarded things to take to my future house, and waited till I could leave. I couldn’t work and study at the same time, and I was grateful to have food on my plate and roof above my head. My parents helped paying for my studies. Asking for honest relationship with my mother just seemed like too much to ask. I am in debt for the fact that my family grew me, gave me food and paid for my education. Wanting to be able to talk about my life and my problems with my mother seemed like too much to ask.

I was already ashamed by not finishing my previous academic studies, from which I was kicked out under the saying that I have schizophrenia (both wrong and ablist). My family lied to other relatives that I have finished the studies. Like they lied about me having a driving licence, even though I failed all my 14 attempts. They paid for the lessons. After I almost fell asleep during a driving lesson I stopped trying, because I knew that it won’t be safe if I fell asleep uncontrollably while driving.

When came my autism diagnosis. It included a meeting between a professional and my mother. The professional asked to interview another family member after that. My mother gave them a data that “was contradictory to what the professional heard from me or observe about me in our prior meetings”. The interview with my grandmother (my primary caretaker in my childhood) gave them the information they needed. I was diagnosed as autistic at the age of 25.

My diagnosis finally broke the relationship that we had. I could live with the fact that my mother was biphobic and transphobic. I could deal with her denying things she thought were me being rebellious. I could rationalize the shame and pain she must have felt with me failing to be normative. But I could not wrap my head around her denial of my autism. Especially since she always seemed to value so much professional opinions and rational thinking.

She was one of the first people to whom I broke the news about me being autistic. I asked her to tell the family, because she was very nice and accepting in that phone call. I hoped we could find ways to talk about the fears both of us had about it. It took me two long years till I accepted the fact that I am autistic and that doesn’t make me less. My mother is still not over it.

I made a mistake when I asked her to break the news to my family. I didn’t expect her to tell them that the diagnosis was wrong. That the whole autism thing is crap. I wasn’t able to pretend I am not autistic. Not anymore. For the first time in my life I had an answer of why everything was so hard, what were screaming and headbanging spells I couldn’t stopped no matter how hard I tried. My autism diagnosis forced me to pause and take a long and hard look on my life and the denial I was in about my own hardships. I felt a relief that my reality was true after all. My whole life I felt pressure to be socially adapt and good at body language. I just couldn’t do it, and I blamed myself for being lazy and not trying hard enough to read other’s mind, like it seemed to me. I knew now that I actually was not “misunderstanding things on propose”, like I was sure I did. Like everyone around me was sure I did, and I had no choice but to believe them, or at least pretend to do so.

I could live with the fact that me being queer was a shame for my family. It was a fact of life. I could not live with the fact that everyone acted around me like I am not autistic, and the whole thing was about wanting attention. So I did my best and asked the therapist whom I worked with at time to talk to my mother about me being autistic. I thought this will work.

I was wrong. My mom denied to every symptom and every criteria I met in the DSM-IV. The therapist was shocked by her behavior. I was not surprised. I tried talking to my mother several other times about the fact. Including the weird talk about why my therapy is about my depression and not, like what my mom expected, to make the autism symptoms less visible. My mother didn’t use the word Autism, but clearly talked about autism symptoms like stimming (stereotypical movements) and eye contact. So I did what I always did, and shut up about my autism as well. After I left the house it was easier not to talk about it anyway. I gave up. My mother was paying for the therapy back then, and I was regretful for that. I thought she will eventually come around. Four years passed since my diagnosis. Nothing changed in her attitude.

Since then I moved once. I finished my master’s degree. The women who was my girlfriend, and a close friend after that, died from her own post trauma. I started receiving medical cannabis. I live with 2 partners whom I love very much. I have a part time job. I receive help in form of a person that comes to support me for 4 hours a week (thanks to my autism diagnosis). I have chronic pain and use a cane. I am doing baby steps in queer activism again, which I left because of how poor my mental health became. All my mother knows about is the degree, the moving and the job.

One day my mother might find this text. But in the meanwhile, I can’t talk to her about the stuff I write here. The idea of having a honest talk that will not end in her shouting at me and her being ashamed of me seems impossible.

I feel like this is too much to ask from her. It must be very hard for her, to have an offspring who is like me. A queer and autistic and polyamorous offspring is shameful. It must be hard for her to be seen near me, acting like my autistic self. I know it because she demands me to take off my headphones if we are in a noisy place. She tries to stop me from stimmimg when we meet. She still says transphobic and bipobic things.

I love her. Yet she showed me more then once that being open with her about me being not straight and autistic is not a thing she wants. Because, and I guess here, most parents wouldn’t like to have children like me. Failures like me. The problem is, I am a real person. I am open about being autistic and queer and polyamorous in my job, with my friends and my aid. I am open about those things because I am tired of living double life (I have so much privilege that allows that as well). I even talked about my gender and medical cannabis with my father, who accepted me, even if he couldn’t understand. My problems with my mother are very mild compared to what other people face. I know it is unrealistic of me to want her to accept me and love me for who I am, like with my friends and lovers. But I still want it so much.

Both of us can’t get what we want. I will never be normal, she might never accept that I am the hot mess I am. I don’t know what to do apart from forcing myself to accept her the way she is.

My Grandmother, My Abuser.

People who are from Western-European cultures don’t understand me. 
You don’t know what a grandmother is.


(Trigger/content warning: Domestic abuse, Force feeding, loss of bodily autonomy.)

(Image description: a broken bridge like structure reflecting in water, in a sunny day. Photo by me.)


Because those grandmothers are not real grandmothers. 
They live somewhere remotely. 
They maybe see their grandchildren once a week. 
Give them presents that they think will exchange love.
Those are not real grandmothers.

Real grandmothers take care of their grandchildren, while the parents go to work. 
Real grandmothers are the ones who … 
I can’t even find a word in my broken English that will even particularly translate the Russian word “воспитывать” [phonetically: Vospitiviat’] the children.

I think that maybe the closest translation of the Russian word “бабушка” [phonetically: Babushka] – which is usually mistaken for grandmother is actually a “mother”. They are A Mother. 
There is a Russian joke that says that in Russia, the traditional family unit is two women and a child. Usually, though, they are a grandmother and a mother. 
The men are working, dead, or drunk. The mother is also working, but she takes some time with the children at the evening. Sometimes there is even a grand-grand mother. She also watch the children while the grandmother works, if there is a need.
Someone has to give the child food, and be there with them while they do homework, or eat. They have to wake the grandchildren up, to make them do light morning exercise. There is a rutine. We have no word in the rutine. We must do every part perfectly.
The whole morning is a rutine, and each stem must be finished and done before the other one is done.
This includes eating. 
And the children must eat everything on their plate. Regardless of what the feel like the want, can or like. Or can’t eat anymore. Yes, even if it means being late to school. 
Eating is the most important thing. 
Eating was my daily torture. 
Eating is how I learned my body does not belong to me. 
Eating is how I learned that I don’t eat for myself. I eat to please others. 
Eating is how I learned that my own body and mind is an obstacle in pleasing others.

In the domestic abuse semi cult I lived, with my grandma telling me about how people who are not my family are not to be trusted. 
That we will be doomed without her.
She took a central role in the family;
as a care giver, nurturer, educator. 
She twisted it into something dark and totalitarian.
People around me don’t even understand what a grandmother is. We come from different cultures. 
How can they understand that a grandmother is a primary care giver and not the smiling person who is giving children cake and spoil them with special food?
The connection between grandchildren and their grandmothers can be as intimate as a connection with a mother or a father.

With their misunderstanding came my silence, because no one believed.
Because grandmothers don’t hit children with a belt when they are late home.
She doesn’t force them eat food amounts, temperature, and pace that only she finds apropriate.
She doesn’t hold them in place, cornering them, and holding them, so they can’t escape.
She doesn’t ignore their pleads to stop, to let just breath.
She doesn’t shut them up when they cry that the food tastes spoild or is painfully hot.
She doesn’t threaten the children that she will feed them their vomit if they puke.
She doesn’t cause them pain and distress because they don’t eat fast enough. They never eat fast enough.
And she definitely doesn’t do that on a daily basis.

No one dreads going home from school. Especially if their grandma is waiting home!

If what was done to me was done to a political prisoner, it was a violation of human rights.

It is not a a violation if it is done by a loving grandmother will do to her grandchild, who she loves the most.

People don’t know that love and food are made out of violence. 
They can’t understand how scary a spoon can be.

My cane, Unwanted Help and Other Adventures in Dyspraxia Land.

Plus, a useful guide of “how to deal with a person with a cane” in the end!

Image description: a photo in black and white and blue hues, of a hand holding a cane near a gingham and lace skirt. In the left lower corner the title of the text is featured in white letters with a black outline.

The other day I was on my way to my therapy. Getting to my psychologist’s clinic by bus requires changing buses once. It is almost bearable. My preferred route includes getting off the buss in a specific interchange. I have to cross the road, pass by a gas station, under a bridge, and a cross another road, and wait in an another bus station.

But on that day, when I got off the buss, I had to organize some stuff in my backpack. I stopped and moved the bag before me, and my cane fell. It fell near my feet, and wasn’t rolling anywhere or disturbing any one. I decided to let it be and continued organizing my backpack.

At that moment I saw a stranger’s hand coming for my cane. I moved my foot on my cane. My first thought was that the cane is going to be taken away. I was not able to grab it fast enough, but signaling that the cane is mine was very possible. Plus — it would make it harder to take the cane. The fact that the hand belonged to a person who I perceived as a teenager/young adult man didn’t help. Most of the Public violence I encountered was done to me by people of those age groups. Frequently (but not only) by boys and men. Old traumas, they die hard. In my brain, teenage boys = danger. People who are bigger then me= danger. Actually, people in general = danger, especially if they go inside my personal space.

The person with the hand was confused. I think he wanted to help me with my cane. To lift it up for me. But he backed off, because you can’t lift up a cane with somebody’s foot on it. Doing that will require some socially inappropriate actions, like touching my sandalled foot.

This is not the first time something like this happens. Things fall from my hands very frequently, and people rush to lift them. They do that once they see I don’t lift my stuff right away, especially when I am with my cane. But for me, this try to help is very inconvenient. When a thing lays on the ground, it won’t fall further. It will stay there, which means that I have the time to reorganize my stuff and my limbs. And when I am ready I pick up the thing. Picking it up while my limbs and things and coordination are disorganized will cause something else to fall. If I panic or pressured to lift it up immediately — something else will fall. And then things will start falling again and again, usually the same stuff. People laugh, or rash to help me. They don’t understand they are making the situation worse.

This situation happened to me a lot during my university days. And judging the reactions of my former classmates I guess this looks hilarious from the side. A person who tries to grab one thing, while everything else they hold is falling. Once a cashier in a supermarket laughed and mocked me. My mom was frustrated with the same happening to me at the first grade while doing homework. It is not a new phenomenon, I live my life while trying very hard to coordinate my limbs. Only recently I understood this phenomena is connected to my autism. It is called dyspraxia, and is about poor and atypical coordination, and the ability to feel and control the body. Dyspraxia often comes with autism. Bare in mind my dyspraxia is very mild, and many people has it worse.

A disorder in which the main feature is a serious impairment in the development of motor coordination that is not solely explicable in terms of general intellectual retardation or of any specific congenital or acquired neurological disorder. Nevertheless, in most cases a careful clinical examination shows marked neurodevelopmental immaturities such as choreiform movements of unsupported limbs or mirror movements and other associated motor features, as well as signs of impaired fine and gross motor coordination.

-ICD-10, F82:Specific developmental disorder of motor function

But how can someones help be a problem? How it is possible that someone lifts something for me actually makes things harder?

I have to try and coordinate my movements to take the thing out of their hand fast enough. If I won’t, I will inconvenience them. And I will have to do this while thanking them and trying to hold all my other stuff from falling. If I let them wait, they might become angry or impatient. And when people become angry with me for things that I can’t control, my dyspraxia is even worse. What Fun!

Incidents like these remind me of my university days again. It reminds me of my way to accommodate myself and how people reacted to that.

Back in the University days (2 years ago) I couldn’t use student’s chair with it’s tiny side table. I usually brought an actual table from another class/abandoned office. The moment men sew me, a woman-passing individual lifting a big table they were doing something similar to giving me something that fell from my hands. At least, in my eyes.

They would try to yank the table from my hands, even if I asked them to stop. This was actually quite dangerous, because the tables were quite heavy. The shifting balance could case the table to fall on someones toe. Or starch my muscles, or cause me to loose balance. I told them to stop doing that more then once. Or at least to suggest help an wait for my consent. Nope.

I know they were trying to be nice and help. They were not trying to “flirt” with me. Many of them were married and religions — while I am visibly secular. The unmarried, secular guys were in much higher social status — who ignored me in any other situation. They also ignored me when I try to join conversations (secular and religious). They couldn’t bare the sight of a person with boobs lifting a table.

And the phenomenon of a person lifting up something that I dropped feels to me very similar. Especially since I am afraid they will try to take the thing or mock me. The mocking happened a lot, behind my back, while I could hear it.

“Don’t worry” I say when someone tries to lift a thing that fell out of my hands. “It can’t fall lower then the floor”, I smile and act like I told a joke. If I can, I put my foot on the thing. They are confused. They were trying to help. The fact their help might be counter-productive is alien to them. I still try to thank them, if I am not panicking. In my head the person that grabbed my thing might be going to hit me, mock me or take it away. And sometimes, they get angry. Especially if I don’t thank them right away and take the thing from their hands. The man in the university were annoyed with me not agreeing to their help.

And I even hadn’t started to talk about how people around me react to the mare fact that I use a cane sometimes. I will share those with you as a useful guide, which is way more fun then repeating myself again and again.

5 things not to do if you see a person with a cane:

  1. Don’t ask them why they use a cane out of the blue. Especially if you don’t know them. Unless you are their health care provider. If you will ask me about my cane I will tell a joke/pun about canes. I have other stuff to do other when explain the complex reasons why I use the cane. If you will try to insist, I will ask you about your hemorrhoids.
  2. Don’t throw a tamper tantrum or make a big deal about the fact that the person is using a cane. I speak of course about people who know me. Some of them think that criticism about my usage of a cane will make me stop using it. I will just avoid then. If the person is not acting like it is a big deal, it is not.
  3. Don’t tell them they are lazy. Seriously, using a cane is actually sort of inconvenient sometimes, when you need to walk and use your both hands. Have you tried walking and texting with a cane? Or walking while eating a snack? Or carry your groceries? So uncomfortable! My cane gives me more confidence in myself so… why? It is not your body. How are your hemorrhoids anyway?
  4. Don’t try to take their cane away, or grab it in order to examine it. Many disabled people feel their mobility aids are extensions of their bodies. I don’t feel that way, but it does give confidence and helps me manage pain and imbalance. I use my cane, I hold it. It is something that I need, in one way or another. Also, I am a person with a metal stick in my hand. Please think about it before trying to assault me.
  5. Don’t ask “Do you REALLY need it?”. Especially if we are not talking about why I am using it. Yes, I need it. Do you REALLY had to ask? Do you REALLY need to know? Or are you trying to decide if I am not faking it, because you are already sure I do. Also, I will ask you about hemorrhoids, again.

Seven Things Parents of Autistics Who Were Diagnosed as Adults Should Know.

An illustration of a letter in an envelope.

Or: A Letter to Parents of Autistics Who Were Diagnosed as Adults.

There are many excellent texts for parents discovering their child autistic. I love those letters, because they give me perspective of what the parents are going through. But I haven’t found any letter to parents of autistic adults, who were diagnosed at adulthood. Letters to people just like my genetic family.

Dear Parent,

Congratulations! Your offspring is autistic! And it seems like they were autistic for a long time. They were diagnosed/started identifying as autistic in adulthood. You, on the other hand, are not sure what to do. Here is my advice, as an adult who have been in the other side of this situation. Your relationship and connection with them is important to you. This is why might find my advice useful;

  1. You are going to have some hard emotions — but please don’t throw them on your offspring. I know that what you are going through is scary and unexpected. You might feel lots of emotions right now. Guilt, shame, anger, fear, and confusion are common reactions. You are only now discovering that a person you raised is autistic. These reactions are understandable. We live in a world where autism is considered a tragedy. A world that sees Autistic people as scary and even dangerous. It is not our fault — but it is how the ableist society sees us. I suggest you to write down any unfamiliar words that appear in my letter and find out their meaning later. Now, lets go back to you and your emotions. They are valid. It is OK to feel whatever you feel. But please, do not pore them on your offspring . They have told you right now something that might be very private and hard. It is even more scary to them when to you. As a queer person, I find that telling people about my diagnosis is somewhat similar to coming out of the closet. Especially when it comes to parents. So please, take some time to yourself to think about it. If you will react towards your child in fear, anger, shame, guilt or disgust — you will only make things worse. Breath. Thank your child for telling you — and trusting you with such explosive information. Tell them that you will need some time. Ask them if it will be OK to ask them questions. Ask them if you can talk about that to other people — and ask who is it OK to talk about it. Your therapist, your doctor, your spouse/s, your siblings, parents or close friends. Online anonymous forums are also great. Take time to process your emotions.
  2. Don’t get attached to stereotypes. Are you familiar with Sheldon Cooper from The Big Bang Theory? What about Don Tillman from The Rosie Project? Well, they are not your offspring. They are also not real people, they are entertainment. It is heavily implied that they are on the autism spectrum/have Asperger’s syndrome. The jokes in such media often laugh at autistic traits and behaviors. What they represent are stereotypes, not reality. Don’t seek popular media as an self education. Don’t compare your adult child to them. DON’T tell your child that you doubt them because they are not like Sheldon or Tom or any other media trope. This is a slap in their face. The creators of these media representations haven’t talked to autistic people. Sometimes they even haven’t read the Wikipedia article about autism.
  3. Your child might start acting in more “autistic” way. Celebrate it! In case you don’t know, your offspring has probably been through a long process. It is very likely they have been reading for a long time about autism and autistics. They might have discovered that pretending to be non-autistic is not always helpful. They will discover some bad-ass coping strategies. That is why they will start to stim more. They might rock, flap their hands, tap their fingers, etc’. They also might start wearing anti-noise headphones, or change the way they dress. It might sound harsh, but those behaviors are not about you. It is about them, discovering ways to be more comfortable and safe in the world. They are practicing self care, and they are doing it beside you. It means they feel safe enough to be themselves with you. Isn’t it wonderful?
  4. Self diagnosis is valid and important. There is a harmful stereotype about people who self diagnose. It goes this way: they just skim Wikipedia and decide they are autistic. But this stereotype is untrue. From my experience people seldom claim to have a condition only based on one article. Of course, one might read an article and say “Yes, this sounds like me”, but it doesn’t mean they to identify as such. They might be anxious about it, a phenomena which is known as “medical student syndrome”. But medical student syndrome is very different from actual self diagnosis. People who self-diagnose themselves don’t just decide the have a certain condition. They do lots of research. They read scientific literature. They read things by people who actually have than condition and compare symptoms. And when it comes to autism, many people are misdiagnosed for a long time. Factors like race, assigned sex and socioeconomic status influence the likelihood of a diagnosis. people who diverge from the “standard” white autistic boy are diagnosed later, or if symptoms are more noticeable. So it is no surprise that some people are missed at childhood. I was one of them, and I wrote about it thoroughly. I can go on and on about the topic of self diagnosis, but others did a better job(5 links). And even if the self-diagnosis is wrong, there is something else that must be going on. So please, don’t undermine your child’s self diagnosis. They did more research when you, and they came out to you not to be mocked, but to be understood.
  5. Don’t invalidate their diagnosis. In the same note, don’t invalidate the professional or self diagnosis. Especially not in front of your offspring. Especially if you don’t have a Really good explanation for their hardships. This denial will only push them away from you. It is the same as saying “I don’t believe you have the struggles you say you are having”. It is a shitty thing to say to anyone, and especially to a person who trusts you. If you think it is “all in their head”, I have a news for you. Autism is a neurological condition. It is actually in the head.
  6. Accommodations = acceptance (and love). Autism is a developmental disability. And people with disabilities need accommodations in order to thrive, or just be able to do stuff. Even if they are “able” to do stuff without the accommodations they ask for, they work harder when you can imagine. Working the hardest every moment, so people will be comfortable is horrible. It is like having to carry around a huge brick everywhere you go, and not being allowed to put it down. So please, respect your offspring’s sensory sensitivities and other needs. (like keeping the TV/radio off during family meetings, asking before touching, not making a fuss about time outs in a dark and quiet rooms, etc’…) By accommodating your offspring you show them that you value them as a person, and Actually care.
  7. Don’t infantilize but also don’t mock them if they are don’t know something “they should”.
    Their autism is not new, and they are not children in adult body. They are adults just like you, even if they have a developmental disability. Assume competence, but don’t mock them for needing help or asking for advice in topics that you think they should know about. The fact you are their parents might make it even more humiliating to them. Just…don’t.

Of course, this is not a finite list, but I think that I covered the topics I thought were the most critical to basic communication. I hope some of this advice will help you, and will make your relationship better.

-Ponetium HalfTree.

Not good enough even for sexual harassment

OR: The privilege of being “ugly” in society’s eye

Old doodle page of mine, featuring poorly drawn women’s faces, as well as some hands. a nose, legs, a butt and breasts. 02.01.2013

content warning: sexual violence, ableism, bulling.

There is a saying in Israel, usually used by men towards women that says: “I wouldn’t even touch you with a stick”. The meaning of this phrase is that receiver is so disgusting that even using a stick to touch them is too much. There are 2 uses to that phrase. One is to deny that that the man even tried to give you sexual attention — usually after receiving a “no”. The other is actually the first thing that they say to you, without any attempt to give any attention. They shout it at you when you pass by. And then they add how ugly you are. And by “you” mean me. I was the receiver of such “compliments” throughout my life. At the darkest days they will also throw stuff on me, or call me ugly. One time one of those people, a teenager like I was, from my class — tried to choke me.

“They do that because they like you” said grandmother. But she also used to beat me up, so what do I even know about positive attention?

I guess that I don’t. I secretly envied the women around me — because they were sexually harassed by men. These experiences rarely, if ever, happened to me. I also was very ashamed about even feeling that way.

Somehow, although I “pass” as a woman, I am rarely harassed by men in a sexual way. This fact always confused me then it came to the topic of street harassments. Women talked around me about the experience they had with men. Man how tried to harass their way to their hearts/beds (AKA pick up artists). Those women talked about the difference between flirting and harassment. They wrote about women being entitled by society to be available to men. They shared their experiences with men who flirted with them until they got “no”. And when the flirting became shaming. I believed them. I was angry with the men who harassed them. I suggested empathy.

I also wondered what was wrong with me. Women around me talked about having to live with this shit daily. They talked about “friends” and co-workers who were saying horrible things. About sleazy comments in the bar, at the street, on the bus. But I wasn’t part of this experience.

It was weird and shameful, wanting to be harassed. But if felt that the fact men almost never harassed me in the “I am flirting with you” way meant I was “ugly”. Which, in a way, was true.

Once I thought that it was because I was too ugly to even be harassed. It seemed like a plausible explanation . After all, from age 10 to 14 people bullied me about my looks to such extent I couldn’t look at mirrors for about a decade. But still, it was weird.

It is not that I wasn’t harassed at all . It happened rarely, surly not on the almost daily basis women around me talked about. When I “got this kind of attention” — it was more physical violence and classic bullying, and at younger ages.

After I became 15 people stopped even trying to touch me without consent. It was great, not to be beaten by bullies, or had nasty things said about my body because I walked by. I was invisible to men. No whistling, no “hi babe, I want to fuck your ass”, no nothing. Flirting never happened. Men ignored me. They still do. Harassers don’t harass me (unless they are kids), even though I look like a woman. It even didn’t happen when I still used to dress in a feminine way.

I wondered why it happens so rarely to me. I can count on one hand the times I was harassed about my looks and femininity for the last 10 years. I am 28. The last one happened 18 months ago. Why is that?

Some time ago I found an actual explanation of the scale that numbers women from 1 to 10, when 10 is the “hottest”. You can find it using your favorite search engine. It is very USA-centric in it’s standards, but it was what I had. Pick up “artists” use this scale to decide what women to flirt with. The closer “her grade” is to 10, the woman is considered more attractive. In the pick-up world, successful flirting with “hot” women gets more points, or something.

When I used the scale I found that my place were about 3, without makeup. I barley make it to 5 with make up. When it comes to conventional beauty, I am not considered attractive. And this is something I am quite fine with. Still, I always felt that my looks are not the reason why I am not harassed. My hypothesis felt wrong. After all — even “unattractive” women get harassed. Men rarely harassed me in the “I want to get in your pants” way. When they did, it was more about mocking me — because it was very clear that I was undesirable. Women who cover their faces get harassed. Women who’s face you can’t see because it is dark get harassed. And yeah, ugly women get harassed. I wondered what was wrong with me.

But what I didn’t knew was that I am “ugly” in a different manner. It is not the way I actually look. It is about my body language and the way I move.

Because I am autistic.

People who see me usually don’t think to themselves “this person has autism”, they do react to me in a different manner. They see my body language, the way I never look at their faces, my hand flapping, rocking and other forms of stimming. They think to themselves: “Something is WRONG with that person”. They may not be aware that I am disabled, and that I have developmental delays. What they do know is that giving someone like me any kind of sexual-ish attention in public is a bad idea. It will only lower them in the eyes of the society. Because when they look at me, they don’t see a woman. The see a “crazy person”, a “freak”, a “child in a body of an adult”, even a “retard”. And so, they wouldn’t harass me in public. Someone like me doesn’t worth their effort. I am someone who people stare at with disgust or fear. It is more likely for them to attack or humiliate me for being weird when for being female-passing in public.

These facts were quite painful to understand. It is painful to know that you are so undesirable that even douchebags wouldn’t sexually harass you.

It is not that I don’t get any harassment or violence. I get plenty of it. It is almost never about my femininity. It is about my disability. My inability to talk the secret language of “real people”. The body language.

But there was a short period in my life when things were different. During that time I got more flirting and sexual harassments when I got before and after. I wasn’t using makeup or combing my hair. I was trying my best to act in a neurotypical (AKA what people like to call normal) so I seemed like I could be a target. People back then even flirted with me. Not much, but they did. It was weird and scary. You see, when you are to treated like you are very unattractive, an idea settles in your mind. The idea that something must be horribly wrong with people who find me attractive. It still feel that way, even though my close friends and partners are great people.

I may feel some hurt about not being harassed, but in the end of the day, it is a privilege. I prefer not being harassed. I feel safe in places that others are afraid to be in. I know no one will try to publicly grab me or shout nasty things at me. People do shout at me for looking not normal, or for being weird, but usually they actively avoid me. I am untouchable.

I guess it is a good thing. But why do I feel so bad about it?

On Being Sick On a Monthly Basis

Period pain doesn’t count as Real Pain™.

Diagram illustrating how the uterus lining builds up and breaks down during the menstrual cycle. The numbers in the diagram are the average only. Source: NIH.

When I was 12 or 13 years old, my mother bought me a book. It was called “From 12 to 16″ and was written in the 60’s in Germany by Barbara Lüdecke. As any teenager will tell you (but some parents might disagree) it was very irrelevant to Israel of the early 2000’s. Unsurprisingly this book is still recommended to teenage girls by “educational figures”.

Israeli cover of “from 12 to 16”

People told me that it cannot be VERY irrelevant, but oh boy, it was. For the autistic, bisexual, genderqueer, immigrant from the USSR kid I was, the book was very confusing. It talked about things I never heard of before or were just not true. For example the fact that every girl has a role model, and should have one. Or like fashion choices no one ever made in Israel after living there more then 3 months. The only change “From 12 to 16” got to the “current” time and place was a paragraph about military service (as it was in the 70’s). The book talked about hippies like they still were a thing. It called Lesbianism a perversion. It the only paragraph that acknowledged that one can be something else then straight. The book did had some good info about hobbies, and the role models were women like Marie Curie. Still, it did a lot of damage in at least one aspect in my life: the shit it taught me about my period. It said that getting my period doesn’t mean I will “be sick several days each month.”

Gynecologists, other resources and any person I knew said the same. Periods are not an illness. They are not good enough reason to take a day off, even if you say you can’t work safely. Unless one was losing their conciseness, there is no reason not to act normal. People talked about discomfort, and I thought that they meant the pain. After all, pain is very uncomfortable. And since my periods were very painful from the beginning, it seemed normal. No one ever told me what amount of pain is a problem. And having the body I have, with it’s atypical reaction to pain, I couldn’t know what was normal.

I was in extreme pain every time. I felt like I was expected to take a painkiller and continue as everything was normal. The painkillers helped a bit, but I couldn’t manage the normal part. My coordination was horrible, my concentration lacking and my though process blurry. But it was all a natural part of “being a woman”. I would add about 3 kg to my weight during periods in swelling. I would be too weak to do physical activities that were just 2 days ago. I would have constipation and diarrhea at the same time. I never told what amount of pain is healthy. At some point I understood that these symptoms are a problem, and tried to talk to gynecologists about them. Each one of them would shrug their solders and tell me to just take ibuprofen. But I already used ibuprofen 3 times a day to be somewhat functional. Several gynecologists suggested using oral contraception. But I actually used “the pill” for several years, and the pain was the same.

My periods were not horrible by the standards that I was raised by. I wasn’t fainting. I could get out of bed if I applied enough self hate (and fear of my family), and I didn’t threw up what I ate. No outer symptoms — no problem.

But at some point in my life I discovered that there are people who would hear about my pain and say that it shouldn’t be like that. One of them, to my amazement, was my current boss. Beforehand I had to suck it up. The fact that I couldn’t work safely during my periods was a character flaw and my own fault. I have my best performance at any given moment, including my period. The fact that I wanted to be able to work in a safe manner, and to be excellent and sharp every moment — was ignored. But my boss asked me why I didn’t tell her that I was at too much pain to work. I told her that it is a period pain, and it “doesn’t count”. She assured me that it is OK to skip a day if I can’t work, and sent me home.

Another person who took my pain seriously was my psychotherapist. When I told her about my period pains, and the fact that no one ever took them seriously, she seemed surprised. She asked me if my family ever told me that my pain was abnormal. They never did. My grandmother discouraged me from taking “too much” ibuprofen. I still took it because it was the treatment suggested by my nursing school textbooks. My mother tried to reassure me by telling me that the pain got easier after birth. Grandmother also told me about other people who suffered more then me at their periods. I was confused by these notions. They didn’t make me feel better or reassured. I only felt guilty for feeling bad for suffering from such mild symptoms as mine. The only one who tried to make me feel better was my partner. He knew what it was like being in pain with others not getting it. But he also couldn’t understand how horrible my periods were, although he saw my suffering. My psychologist was the first person who was surprised that family me didn’t try to get me medical help when I was a teenager. I guess that they also thought that severe pain is normal, because that was what they knew. Because in my case, no one else took their pain to be real problem.

I don’t want to finish this text on a negative note, but my story doesn’t have a happy ending. I found a medication works for me, although it has some unpleasant side effects. I take a vacation day or two every month. Unfortunately, my periods actually became more painful with time and age. I got a diagnosis of severe IBS (Irritable Bowel Syndrome), which explained some of the symptoms I have during periods. My last period was one of the most painful I ever experienced. I guess it have to do with the fact that I was stressed because I had a plane flight. The airport was inaccessible hell with some horrible security theater. More then once I found a spot on the floor to lay on and sobbed out of pain.