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.

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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?

Underachiever: On Working “Only” Part Time

A selfie of me on a break from working in the hood. I have bright skin and eyes, brown and messy hair. I wear noise blocking headphones and a surgical mask. On the top left of the image, white letters with black outline are saying: “On Working “Only” Part Time”.

“So, you are an underachiever”

Said my Gastroenterologist. It was one of out first meetings, during the anamnesis. I came with complaints of continuous abdominal pain for several months. I am stily in pain. My blood-work indicates that I might have Crohn’s disease. I just told him I worked as a caregiver for the elderly — a job I will soon leave. During that time I was finishing writing my thesis for my Master’s degree in biotechnology.

I am an underachiever in the eyes of most “normative” people. People who see a young person who have to work harder. Who probably can work harder. Who they think should work harder. When people hear that I have a second degree, and they assume I should have a fancy job. Something like work in a biotech startup, a pharmacological company. And if not, I should be working on my PhD. When they hear what I do for living they are confused. I seem to be “such a bright and smart person.” I should be working full time, having some huge career goals. Of course, I also should be working on having kids as well, because I have boobs. But let’s put the kids part aside.

I don’t work as a caretaker anymore. After finishing my thesis I found a job as a research engineer in a lab that works a lot with plant tissue cultures. I mainly transfer plants from one culture to another, and make growth mediums. I worked on animal tissue cultures for my Master’s degree. That is why handling plant tissue cultures is a piece of cake for me. They need less complicated care and they grow in a slower rate.

When I applied with my short CV I also asked if there is an option for a part time job. The answer was positive and I was invited to an interview. During the interview I worked hard on maintaining an eye contact. I tried my best to look smart, normal and relaxed. But at the end, I did what some people in my family said me I mustn’t do. I disclosed that “I have an Asparger’s syndrome”. I decided that using autistic will lead to too much problems. I was asked to explain, which I did. I have no idea why I impressed the staff in the lab I applied to. But I did. I work there 3 months now, 3 days a week. And anytime my grandmother and mother are reminded of this fact, they are angry at me. when others hear that I work part time they stop for several seconds. And they ask questions.

Mother and grandmother say I must work more. I must make more money. I shouldn’t show any signs of my disability, like wearing noise blocking headphones. I mustn’t ask for accommodations like keeping the radio off or take breaks. This is asking for special care, which is wrong. No one will agree to employ me like that. I should be a good citizen. I must be like everybody else.

But I disagree.

You probably think to yourself that I am lazy, you may be right. This is what my parents and grandparents say to me. But that is not the only part of the story. Here is other parts of it, parts that are told by me, and are actually about me.

I work in that lab 3 days a week, for about 8 hours a day. It is not because I am only needed 3 days a week. It is because 60% of a standard job is about the 100% I can give. More then that means that I do nothing but work and sleep. I will say that again: working full time will mean that all I will be able to do is work and sleep. I will also need a lot of care and support from my live-in partner. If I work that much, I won’t be able to make myself food, or shower or even get out of bed during weekends.

In order to function in the lab without anxiety or too much pain I take painkillers and herb oil daily. If I work full time, my anxiety will be very high due to with public transportation dealing twice a day. It is also very hard for me to communicate with people because of my autism, which I need to do sometimes. My pain will be higher — because it increases when I am tired. I will come home, and fall asleep. After sleeping for 3 hours I will manage to shower and brush my teeth and go to bed, for 8 hours of sleep.

I know from my life experience that in such condition that if I cook, I will cut myself. If I try to clean I will go into a meltdown and cause much more mess by knocking of things accidentally from places. Because when I am tired, my gross motor skills are extremely bad. I won’t be able to eat, because eating is scary for me. My history of violent force feeding means that food is scary. And my all consuming anxiety gets superpowers when I am exhausted.

I will do be able to do only 2 things. I would work. I would sleep. My partner will have to take care of me even more when now. Because I won’t be able to do any other thing.

How can I know all this?

I know what it will look like because I already lived that way during my Master’s degree. When I lived with my genetic family it wasn’t so problematic. I was not allowed to actually cook anyway. I tried to pack my lunch boxes on my own when I could, but it was useless. My grandmother would investigate them and change and their contents. She added more food, sometimes in a way that wouldn’t allow the box to close. I couldn’t eat that food, because it was a change from what I expected to find in my box. Sometimes my grandmother lied that my lunch box wasn’t touched. But it contained food that I couldn’t eat due to sensory problems. On other times the parts of the lunchbox were put in the wrong way, not allowing it to close properly. I stopped packing lunch and ate the things that were packed for me. So I gave up and my life was a sleep-work-sleep-work cycle. Having a daily fight about the content of my lunch box was too much. My life was nothing but the lab and the degree. I thought that this is how everyone lives their life, and I was somehow problematic for wanting more. I thought that I was too weak for being tired and needing so much sleep. Other people managed to do other things in their life. Not me.

I know now that I don’t want to live that way anymore. I don’t want to live a life in which I can’t do anything but work on tissue cultures, sleep, and nothing more. No social activities, because they will lower my performance at work. No hobbies, because I won’t be able to do them while sleeping. No children because I won’t be able even to have sex to make them. My partner is not into raping me when I sleep or too anxious to do anything but lay on the bed and rock back and forth.

I don’t want to live like that for 20 or 30 or 40 years. I want to recover from the abuse I grew under. I want to treat my depression and anxiety — so once a week I will take the bus to my psychologist. No working after that — my motor skills vanish after sessions — and I will ruin experiments. I want to be with my partners and my friends. I want to cook and clean the flat. I want to have hobbies, to write and sew and draw. I want to live.

But you need money!

I want to work so I can afford a roof over my head and several meals a day and therapy, and I have enough for that. I don’t need a fancy house or a social status or normative brand clothing or furniture. I don’t want to eat in restaurants every day or week or month (they are not accessible for me anyway). I have enough. Why should I want things that I don’t even like or need?

I don’t want to work for the sake of working, because that is what adults should do.

So yeah, I am an eyesore with all my autistic hand flapping and my cane using due to chronic abdominal and leg pain. I am an underachiever for working part time job because I want to do more then work and sleep. Because I can’t do more, even if I try my hardest and do my best. I can’t control my motor skills going down, and I cut myself enough times to learn my lesson. As lab rules go: Safety first.

You see, I am an underachiever because I want to be happy, and I want to be as healthy as I can. I have only one thing in my life: my time. I don’t want to use it to make others comfortable by working full time to look normal. I have enough. I make about 3000 ILS a month right now. I get paid the minimal wage per hour. My salary will go up once my job will recognize my degree (paperwork issue). It probably won’t be more when 5000 ILS a month anyway. Right now I can afford what I need. But I need more then money, I need time. And my job can’t give me that.

Noise Canceling Vs. Noise Blocking Headphones (Disability Equipment)

White noise canceling headphones Vs. black noise blocking headphones on a blue floral background

Don’t have time? Read the TL:DR at the end of the article!

When it comes to accessibility and accommodation devices the use of anti-noise gear is very common by autistics. These headphones can aid people with ADD/ADHD, Sensory Processing Disorder and other disabilities. For me, my headphones are like a cane — they make the world easier and less painful. Using my cane or the headphones allows me to do things I can’t do. The headphones also allow me to do things, do them without melting down or eating up all my energy on being in a place. They make my life easier, and walking outside much more bearable. I don’t tire as much, I can go into shops without being unable to do anything for the next day or becoming very afraid, confused or overwhelmed.

Till my last birthday I used Noise blocking headphones, from the kind used by technicians and electrics which I got from my dad. I also use silicone earplugs with them if I need some extra quiet.

This year my awesome friends collected money and bought me noise canceling headphones. I wanted them but I wasn’t sure if buying them was an investment I was ready for — so this was a great birthday present for me.

I decided to do a review and a side-by-side comparison of the two, with pros and cons for each product. I hope you will find it quite useful for yourself or your dear ones!

Noise Blocking Headphones

Noise Blocking Husqvarna’s Headphones

What I use: Husqvarna’s “Hearing protection” old model. 
 Weight: ~200gr
Noise reduction; NRR: 25 dB(A) SNR: 27 dB(A)

Other names: Noise isolation headphones, work earmuffs, passive anti-noise headphones, Hearing protection headphones.

Where to get:
 You can get those in a shops for work equipment, building and DIY home supplies. Various work places supply noise blocking headphones. You can also get them from different shops on AliExpress, eBay or Amazon.

Price: 
About 100–500 ILS (25–130 USD), depending on quality.

How they work:
They go around your ear to block sound-waves from around you and contain different materials inside them to block and muffle the noise. The headphones provide physical barrier between your ear and the sounds around you.

Pros:

  • Relatively cheap (some work places even provide them).
  • No need to charge or use battery. Just put them on and adjust the size!
  • Water proof.
  • Basic models can be used on tests since they are not electronic and do not connect to electronic devices.
  • There are models with FM radio and Bluetooth connection.
  • Low tech — no need for technical understanding to use.
  • Usually it doesn’t matter how you put them because they don’t have left and right sizes.
  • Can be combined with earplugs for better protection and quietness.
  • Can be combined with small headphones for listening to music.
  • Works fine with thin glasses temples (the part that sits on your ears).
  • They might be approved by your country’s “Standards Institute” and thus are reliable and actually protect your ears.
  • Provide hearing protection.
  • Blocks taking and not talking equally.

Cons:

  • Big and bulky — some won’t fit under hats or won’t allow you to sleep in them comfortably on your side/stomach.
  • Sometimes their colours/design give them away as work earmuffs. This can cause stares, unwanted attention or questions.
  • Muffle lower pitch noises better, and you might not hear other talking to you.
  • Can’t play music on their own.
  • Some models are might be uncomfortable because of the pressure they put on your head.

Noise Canceling Headphones

Parrot zik 2.0 white noise canceling headphones

What I use: Parrot zik 2.0 white noise canceling headphones.
Weight: 270 gr, Noise canceling: Up to about ~30 dB,

Other names: Active noise canceling headphones, noise canceling headphones, Noise controlling headphones

Where to get: Electronics stores (like BUG), Amazon, eBay, manufacturer’s e-shops.

Price: 
About 1000 — 3000 ILS (250 — 8000 USD), depending on brand and model.

How they work:

The noise canceling works using the physics of sound waves. They use a “counter wave” to cancel the outside noise (Destructive interference). The device can’t predict random noises, so it is more useful for predictable, monotone sounds.

Graphical depiction of active noise reduction, from Wikipedia

Active noise-cancelling headphones use a microphone, amplifier, and speaker to pick up, amplify, and play ambient noise in phase-reversed form; this to some extent cancels out unwanted noise from the environment without affecting the desired sound source, which is not picked up and reversed by the microphone.
Wikipedia

Pros:

  • Noise cancelling degree can be controlled via an app.
  • Cool and trendy look, various colours might be available.
  • Very comfortable.
  • Various models: earbuds or headphones are found on the market.
  • Can play music from your phone (or computer) and be used for voice calls with high quality sounds.
  • Have some degree of passive noise blocking.
  • You can hear people talking to you — so you won’t miss important stuff!
  • Quite fine to sleep with on the side/stomach, if airplane mood is activated. It is best with probably earbuds models.
  • Music volume control via touch panel in some models.
  • Lowers the volume needed to listen to stuff.
  • Can be worn with some hats.
  • Have both interactive mood and airplane mood.

Cons:

  • Expensive.
  • Not water proof.
  • Delicate electronic equipment.
  • Right and left sides are important — if you don’t put the headphones the right way they might not work as well.
  • If have a control panel on one headphone — might not be as comfortable to left handed individuals.
  • You can still hear human speech clearly, even if you don’t want to.
  • Work on battery — and need charging. If not used for several days, may need additional charging.
  • Electronic noise might be heard if the headphones are charging.
  • Some functions might need a smartphone.
  • People who find it hard to work with electronics might struggle with using them.
  • Accidental touch on the ear control panel leads to starting / stopping what you are listening to.
  • Eats your phone battery quite fast.
  • Can’t use them on tests.
  • Unknown degree of hearing protection.

Summary

Both passive and active anti-noise headphones have their pros and cons, and you should choose what will work better for you. I recommend getting noise blocking headphones. Their price makes them accessible and because they don’t need as much care to block noises. If you can afford active noise cancelling headphones — they can be great addition to your set of tools for dealing with the world. They worth it, even if they are marketed as “super awesome headphones” for able people. They were not designed with disabled people’s needs in mind. Even if you prefer active noise cancelling, I still recommend buying passive headphones as a backup. Also, having both can widen the times you can make yourself more comfortable. Most of the time I use my passive headphones, because I am less worried that they will break. I think that they cancel speech and noises a little bit better, by my experience. The active headphones are very useful as well, especially if I want to listen to texts while working. They are also great for talking on the phone because they have high-quality microphone.


TL:DR;

My final recommendation: active noise cancelling headphones are expensive, but are great. Passive headphones are awesome as well. Get the passive ones, or get both(passive and active) — with the passive functioning as a backup.

My Anxiety

Anxiety. An illustration I drew specifically for that post. You can see part of an alien walking in a thigh high murky water, their reflection is visible, distorted.

Imagine your day. Everything is the same, but you always have to go through water. You have no control over the height of the water. The water makes everything you do less comfortable and much much harder. At the end of the day you are so tired from going through water you have no energy for other things in your life.

This is my life. My anxiety feels like my surroundings are constantly flooded with water. I have to walk through this water, whenever I go.

Sometimes my anxiety levels are quite low, somewhere around the calves. Sometimes I have to make my way in the world with water up to my chest. On especially good days my anxiety is not higher when my ankles. It is still there, and it feels like walking in water. And water is more resistant then the air. Most people around me walk on dry land, sometimes being wet, but not like this. Walking day after day, week after week, for years — in the cold waters of the anxiety. Waters that you can’t get used to.

Sometimes the situation becomes so unbearable that I take my medication, alprazolam. Alprazolam is a benzodiazepine, and benzodiazepines are highly addictive. My psychiatrist said that I shouldn’t take more then 3 a week. So I don’t. If I can, I don’t take it at all. I am used to living in constant anxiety.

When I take my medication, the level of water becomes lower, but I stay soaking wet. I am never completely dry. Sometimes I become a zombie. Feeling like an un-anxious zombie is better than struggling for air. Feeling numb is way better than drowning in anxiety.

There is an another thing I use for my anxiety. I use a concentrated herb oil. I don’t use it in the way other people do. I take small doses, rarely. But when I take less then a drop of this oil, I can have several hours when I don’t feel anxious at all. I can clean the house, write my thesis, cook food. I can eat without flashbacks. I can even handle meeting my abusive family of origin. I still don’t like it, but I don’t finish the evening crying, self harming and a total wreck. In these precious hours I am not walking in water. My anxiety doesn’t suffocate my motivation. My fear doesn’t become something that stops me from doing things. My anxiety leaves me for several hours. Until I tried this herb, I didn’t knew what is it like to live without feeling constant fear.

On most days I choose not to do anything about the water, even if there are things that make it higher. Public transportation is making the water higher. Meeting my mother or grandmother? Even more. Being shouted at? Eating? Talking to people who expect me to be neurotypical? The water rise and rise.

On good days I can manage the water. I stay at home if I can, and try not to make my water to rise. It is hard, because I have to eat, but I have several methods to trick the water. It is not as good as using chemicals, but I am so scared of addiction that I choose to use them only if I have no choice.

But even choosing to use my medications is hard. It is hard because of my executive dysfunction. Going to take the herb oil or alprazolam is also scary. Acknowledging the water is scary, because I was told for years that the water is not there. That it is not scary. That it is not hard. The reality of things being hard against the things I was told were confusing, but not unfamiliar. In the past I was told when I was hungry, cold, happy or interested in things. What I thought about what I felt was irrelevant. The things I said I liked were taken away from me. They said that if I like something because it has some characteristic, it means I should like another thing with the same characteristic. Even if I didn’t liked it.

So acknowledging the water, means that I have to fight my memories of others telling me otherwise. Acknowledging the water also means paying attention to it. And when the water is anxiety — it becomes even scarier. Because when I know what I feel — I am actually feeling it. Why is that? Alexithymia. Most of the time I am not aware of what I feel — emotionally, but also sensually. For me, knowing that I am afraid is like knowing I am lost. It makes things scary.

So I am living like that, forever sailing in the waters of anxiety.

Beware, here be dragons.