Category Archives: guest post
Welcome to FWD retrospective week! We’ve taking a look back at some of our favourite posts on a variety of themes over the next week.
Hi, I’m Cydne. I’m a pansexual, biofemale whose gender identity changes from day to day. I have severe mental health problems, and Aspergers too, as well as arthritis and IBS. Joy! I’m a massive Trekkie and a video game nerd, and I usually blog at livebythem.tumblr.com.
There was a day last year I remember quite clearly. I went shopping. I spent 20 minutes talking to one of those guys who proposition people on the street for charity donations. He was collecting for a charity I do not agree with, and he was asking for a donation I could not afford. I ended up donating anyway. About an hour beforehand, I bought some overpriced cheese because the aggressive free samples guy made me feel guilty by handing me the product right after I took a sample. I’d also gone large that day on my McDonald’s order, because I forgot to ask for a medium, and the server said “So that’s a large, yeah?” and I was too embarrassed to say no.
Anyone with conditions like mine will have similar stories to tell. Those of us with social phobia who are afraid of confrontation. Those of us on the Autistic Spectrum who are easily led and manipulated. Those of us with depression who are lonely and just thankful for someone to talk to. We are the ones who are most easily tricked by aggressive sales techniques, most likely to tip high when a server pretends to be our friend, most likely to keep something we don’t want for fear of confrontation upon returning it. Yet, statistically, those of us with mental illnesses are more likely to be jobless, and thus, more likely to be unable to afford the things we buy out of fear and guilt. According to a UK study, only 20% of people with mental illnesses are employed.
It is likely that the companies who instruct and train their employees to act in this manner are aware of the effect they have on us. A friend of mine took a seminar in “Assertiveness and Sales Techniques.” He was taught how to spot weaknesses and take advantage of them in order to sell products. He was taught to be slightly flirty with women who seem to care a lot about their appearance, and taught to act like a kind friend to people who shop alone — especially women who look nervous or unhappy. In short, he was taught to spot psychological weak points and use those to sell goods.
I doubt his experience is a rare one. These multinational corporations pay millions of dollars to research firms to help them improve sales. Sales research groups use psychologists to help them better understand how to sell to people, especially on the case of body language. The effect Autism and mental health issues have on body language is well known. So there’s a fair chance that they know they are harming those of us with mental health problems and Autism or Aspergers, for the sake of sales, both emotionally and financially, similar to how they know they are harming those with body dysmorphic disorder by advertising using only photos of the slim and airbrushed.
It’s the donation soliciting people that affect me the most, I think. They seem to deliberately target me, perhaps because I used to shop alone. I find confrontation terrifying. I find meeting new people terrifying. And I’m terrified of what people think of me. So, when a friendly looking guy approaches me and asks me for “a moment of my time to discuss Oxfam,” I find myself unable to walk away, lest he judge me, or say something to me to make me feel bad in some manner.
They always say things like “it’s only £3 a week, anyone can afford that!,” and I find myself so ashamed of being on benefits and having shopping bags with me, that I have to agree and sign up. Even now, I feel like I should tell you that my bags usually contain pet food or replacement clothing, in case you judge me for how I spend my benefits. Heck, let’s be honest, saying “everyone can afford £3 a week” is pretty darned classist, too.
A day spent shopping may not seem all that memorable to most people. But my day shopping last year will likely stay with me forever, serving as a reminder of my vulnerability. I no longer shop alone. I do my shopping online, or with a trusted companion. I am a vulnerable person, through no fault of my own. This is not about being easily persuaded, or being a stereotypical “shopaholic” female with no money management skills. This is about being ill, and knowing that most companies out there will gladly take advantage of that.
Rachel Cohen-Rottenberg is a wife, mother, writer, editor, artist, photographer, and leader of the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). She blogs at Journeys with Autism, and her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010. Her last guest post for FWD was “I Do Not Suffer From Autism.”
In writing this piece, I in no way wish to imply that my approach is the only approach, that having a religion is better than having no religion, or that Judaism is right and that other paths are wrong. As long as people act consciously and ethically, I really don’t care what they believe, or whether they avoid religion like the plague. I have been involved in social justice work on behalf of all people from a progressive Jewish perspective for much of my life, because that is the culture in which I find myself at home and because it provides me with a useful framework for action. I abhor proselytizing and fundamentalism of any variety; I reject violence, no matter who carries it out; and I support a just, two-state solution in Israel/Palestine, may it be in our lifetimes.
For almost two years now, I’ve become increasingly aware of how other people regard autistics. As you all know, the news is not altogether good. As I’ve waded my way through all manner of error and nonsense, I’ve had the most familiar feeling, as though I had heard it all before. The other day, it finally occurred to me: I’ve encountered the same basic stereotypes and misinformation about Jewish people as I have about autistic people.
All minority people, to some extent, have to endure similar false charges, but the similarities between my experience of prejudice as a Jew and my experience of prejudice as an autist are striking. Here are some of the most damaging myths:
We don’t love properly. In the larger, mainly Christian culture in which I’ve lived my life, the view seems to be that the Jews of the “Old Testament” were all about strict justice, and that the Christians of the “New Testament” were all about love. (I put the names of the books in quotation marks because I don’t see one as being old and outmoded and the other as having superseded it; I see them both as valid traditions in their own right.)
The Jewish God, the critique goes, is only a God of judgment, a God of punishment, a God who lacks forgiveness, and we are just like our God: cold, judgmental, merciless. The Christian God, on the other hand, is a God of love and forgiveness. When I was growing up, without much of a Jewish education, I actually believed all of this. I believed it until I was in my late thirties, and I asked a rabbi whether there was anything in Judaism to help me heal my broken heart. His reply? “Yes. Our people brought the truth to the world that there is a God who loves us and cares about our lives.” I nearly fainted. When I began to study and practice Judaism in adulthood, I was startled to find that we are instructed to love our neighbors, to love our enemies, to love mercy, and to make right the wrongs of the world.
And what did I believe about autistic people until I found out that I actually am one? I believed that autistic people don’t have empathy, the very basis of loving relationships. The lack-of- empathy trope has been at the core of autism theory for a number of years, and it’s appalling how many people still believe it. Of course, they don’t appear to have met any of the autistic people I know, nor do they seem to have much empathy for the pain and suffering this canard causes autistic people on a daily basis.
We think terms of black and white. Now, the interesting thing about this particular myth is that it betrays some pretty black-and-white thinking on the part of the people who accuse us of black-and-white thinking. For example, when people say that Jews are only about justice, it’s justice of a kind that brooks no shades of gray. Christians, on the other hand, are said to be all about love, which encompasses many, many shades of gray. But the truth is that Jewish tradition has always been concerned with a concept called tzedakah, which is essentially an action that combines justice (righting a wrong) with love (easing and, ultimately, healing the suffering of other beings). We do not think in black and white about justice and love; in fact, we combine them. To split them apart is an example of black-and-white thinking at its best.
Now, consider the myth that autistics think in black and white, usually expressed as our being all about logic and systems. In fact, some researchers believe that we have Extremely Male Brains that are high on systemizing, while non-autistics have brains that are high on empathizing. And yet, when I look at my own life, and that of other autistic people, I often see a capacity for high levels of both systemizing and empathizing, and I see them working together. We don’t split them apart. Other people do, and then they tell us that we’re the ones with the black-and-white thinking. It’s enough to make you weep.
We are excessively logical. Many people believe that Judaism is all about “legalisms,” and that it does not concentrate on coming from the heart. This particular myth is very old and very intractable, in part because most people believe that Judaism begins and ends with the “Old Testament,” ignoring thousands of years of mysticism, story-telling, discussion, ritual, and practice that are all about opening one’s heart. I’m not saying that all Jews come from the heart, any more than all Christians come from the heart. I’m saying that Jewish culture has its own ways of combining head-thinking with heart-wisdom that are little known or understood by others.
Of course, autistics are constantly stereotyped as being overly logical—except when we’re stereotyped as being out of control. And yet, somehow, we manage to have friends, families, relationships, children, and ethical lives.
We insist upon being different. For a number of years, I wore garb that clearly identified me as Jewish. For awhile, I wore a yarmulke and tzitzis (ritual fringes) every day, all day. During another period, I only wore headscarves and dresses. I now dress in a thoroughly secular fashion. When I didn’t, I got all kinds of attitude about “setting myself apart.” Of course, I wasn’t setting myself apart. I was just being myself. And I wear what I wear now because I am just being myself.
I grow. I change. I morph. I explore. I’m inconsistent. I’m human. Go figure.
Not surprisingly, I have gotten similar messages regarding my autistic sensitivities to all things sensory. I’m told that I’m “choosing” to be so sensitive, that I’m setting myself apart, when I’m really just being myself. And when my sensitivities are not as troubling, I’m also just being myself.
I grow. I change. I morph. I explore. I’m inconsistent. I’m human. Go figure.
Other people are normal, and we are abnormal. Many years ago, when my daughter was small, her father used to pick up one of her friends after school and bring him home. One December, on the way home, the young man said, “We celebrate Christmas at my house. We don’t celebrate Chanuka. We’re not like you. We’re normal.” My ex-husband took the long way home and patiently explained the concept of diversity to the young man until he got the picture.
And of course, we autists get stuck with the “abnormal” label all the time—more evidence of that dualistic, black-and-white thinking that “normal” people aren’t supposed to engage in.
We are all alike. In response to all the many myths surrounding Judaism and Jewish people, I did interfaith work for a number of years, teaching workshops in areas schools and churches. Some of the most common questions I got began with the words, “So what do Jews believe?”—as though we all believe the same thing! That was the moment I’d introduce the mantra of “You get two Jews in a room, you get three opinions.”
Likewise, it seems, people have an excessive need to see autistic people as being all alike. It usually expresses itself in terms of narrowing the definition of what autistic means. (I recently saw a YouTube video in which the mother of an autistic young man actually said that you can’t be autistic if you can speak. I was flabbergasted. ) At other times, this need to see us as alike expresses itself in conclusions by researchers that autistic people are a collection of deficits and impairments without any strengths at all. If we have strengths, they are usually called “splinter skills” (a term I despise, even though it’s got some cool alliteration and assonance going on).
Of course, we’re as varied as any other group. I’m not sure what kind of impairment, oops, I mean, neurological difference keeps people from seeing that variation. It might be interesting to do some genetic research on the matter.
We are not fully human. I first became aware that some people believe that Jews are not fully human when I was in Hebrew school and saw a piece of Nazi propaganda in which Jews were likened to vermin. I felt such pride in who I was that I just couldn’t believe my eyes. Who could really think that Jews weren’t people? Apparently, at certain times in history, a great many people.
I was reminded of this experience when I happened upon some writing by Dr. Ivar Lovaas, the psychologist who pioneered the treatment now known as Applied Behavioral Analysis. In discussing the basis of his treatment, he wrote of autistics in 1974:
“You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense—they have hair, a nose and a mouth—but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”
I shudder to think of how many people still believe this kind of thing.
Of course, Jews, autistics, and members of any other minority group share similar experiences: we are vulnerable no matter how well we “pass” and live up to the standards of the larger culture, and we constantly have to fight against the appropriation of our own voices. Moreover, the solution to whatever problem we appear to pose consists of attempts to do at least one of the following: a) efface our differences to make us indistinguishable from others, b) demand at least a pro forma conversion to the dominant paradigm, which means that we can stim/rock back and forth in prayer/be ourselves, but only out of the public eye, or c) isolate us in ways both visible and invisible.
There are many, many autistic people who cannot do a “pro forma conversion,” who cannot “pass” as I do, and who have endured severe levels of bullying, assault, and isolation as a result. I shy away from the word Aspie and I use the word autistic to describe myself in order to make common cause with people across the spectrum (in the same way that I refer to myself as a Jew, not a denominational Jew, in order to make common cause with other Jews, no matter how differently they may think and practice, and how vehemently I may disagree with them). I will continue to do both. I have Asperger’s Syndrome, and that makes me autistic. I had Jewish parents, and that makes me a Jew. I may present differently from others in my group, but then again, so do trees and birds and rocks. Why should people be any less diverse than the whole of creation?
[Interested in guest posting for FWD? Please see our Guest Posting page for more information!]
Rachel Cohen-Rottenberg is a wife, mother, writer, editor, artist, photographer, and leader of the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). She blogs at Journeys with Autism, and her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010.
I do not suffer from autism.
I suffer when someone calls my way of being a disorder.
I suffer when others invest time and money to prevent people like me from being born.
I suffer when anyone suggests that I might recover or be cured.
I suffer when others feel sorry for me or for the family I have created.
I suffer when I fear that people will consider me broken.
I suffer when my being autistic scares people away.
I suffer when others try to silence me.
I suffer when people suggest that I do not have all the same feelings they do.
I suffer because I must describe my way of being by referring to a medical diagnosis.
I suffer because I live in a society that does not celebrate difference.
I suffer because I live in a culture that does not cultivate sensitivity.
I suffer because I live in an environment that values appearance over substance.
I suffer because I live within a social order that calculates human worth based on productivity and conformity.
I suffer because I live in a world that does not honor the gifts that autism brings me.
I suffer because I have learned to apologize for who I am.
But make no mistake: I do not suffer from autism. I do not suffer from who I am.
[Interested in guest posting for FWD? Please see our Guest Posting page for more information!]
Diane Shipley is a freelance writer obsessed with feminism, US TV, memoirs and pizza. She writes about those things and more at her blog, the imaginatively-named Diane Shipley Blogs (http://blog.dianeshipley.com) and is almost always on Twitter (username: @dianeshipley).
You’re intelligent, personable, and get good grades. It might look like higher education is a given.
But it isn’t. Not when you have a disabling illness. Then, making it to graduation could be more challenging than you ever imagined.
Last year, I tried to finish the degree I dropped when I got ill back in 1998. The disability services department at my new university contacted me the summer before I started my course, asking what extra help I would need.
I had never been a student with disabilities before, so I couldn’t anticipate all the challenges I might face. But the system for reporting those I was aware of seemed doomed to failure: a disability advisor emailed my department in the first week of the semester to advise them that I needed my seminars and lectures to be accessible. Inevitably, this was too late. One of my lectures was in a building with a lift that was almost always out of order, leaving me the choice of missing out or making myself ill. And my registration experience was disastrous.
Registration and enrolment were in two separate buildings nowhere near each other. As no buses ran in that direction, this meant a fifty-minute round trip on foot, well beyond what I could cope with. So I emailed the university to explain this, asking if I could register and enrol online, instead.
Here’s where I point out something that should be obvious but seems not to be: when disabled students express a preference, it shouldn’t be brushed aside in favour of what administrative staff would prefer. Being assertive can be very difficult, especially in situations where someone has power over you. Expressing one’s needs can also be embarrassing, as many long-term illnesses and disabilities are stigmatised. It’s an issue that deserves to be treated with sensitivity, but too often isn’t.
Instead of granting my request, a member of staff from registry services suggested I meet her late in the afternoon, instead. Because her address was at the end of her email, and was somewhere I could access by bus, I agreed. But when I went to her office at 5 PM on registration day, the shutters were closed. Tired, upset, and alone, I vented on Twitter: “I don’t think this university cares about disabled students.” Then I called my mum in tears and she offered to leave work and drive me to the building where registration was taking place. I finally made it and explained the mix-up to one of the staff, who said someone there wanted to speak to me.
The head of registry services strode over and introduced herself, a stern expression on her face. She then shouted that I couldn’t say what I liked on Twitter without giving them “right of reply” and that the university did care about disabled students. “I’m fully conversant in equality law,” she snapped. When I mentioned the mix-up over where I was registering, she said that perhaps I should read emails more carefully in future.
She wasn’t wrong: I could have double-checked. But in my defence, starting university was an overwhelming undertaking, and confusion and anxiety are big parts of my illnesses. I had also made the mistake of assuming that no-one would suggest we meet somewhere I had specifically said I couldn’t access.
I was finally able to register but because of the delay, I couldn’t get into the student intranet until two days later, so the seminars I wanted to sign up for were full. This meant that instead of organizing them at times to suit my illness, I had to take whatever was left. When I contacted my departmental disability liaison officer to ask if I could be squeezed into more convenient seminars for a couple of subjects, he demurred, and I got the impression he thought I was trying it on. I didn’t have the energy to argue that this seemingly small issue was essential to the management of my illness.
As I thought I would, I struggled with my schedule. Ten hours of class time isn’t much, but I hadn’t counted on the extra time I’d need to walk to lectures (and then sit down and catch my breath). In retrospect, I needed to take taxis to my classes. But I was reluctant to organise this because one of the disability support staff told me that some taxi drivers were “funny” about short journeys.
But my biggest challenge was the fire alarms, which went off once or twice a week. We would traipse out of the classroom, walk down three or four fights of stairs, stand around for ten minutes, and then go back up again. I had no idea what disabled students were supposed to do, and didn’t know who to ask, so I just struggled on, my muscles spasming from pain and stress.
I know what some people will think: maybe I was too ill to be at university in the first place. But I had a good reason for attempting it: money. In England, if you’re on a full-time course, you are entitled to loans, grants, and bursaries, which add up to (just about) enough to live on. A part-time student is only entitled to £225 a year. So I took a risk.
It’s a risk that failed. Although I could cope academically, physically I was falling apart. After five weeks, I suffered a severe stress-induced relapse and the university recommended I take a leave of absence. This meant I wouldn’t have to reapply if I felt well enough to return, but I wouldn’t be entitled to student finance or disability benefits during this time, either. I only scraped by thanks to my overdraft, a little writing work, and my supportive parents.
This summer, I had to decide whether or to go back. I decided against it. I didn’t feel well, and I didn’t feel welcome.
I don’t think my experience is unique: I suspect it is more common than universities realize. The way I was treated is part of a much larger problem: how we, as a society, view people with disabilities. We need to stop being surprised when someone has special needs, and there needs to be a socially acceptable way of saying “I can’t do that,” or “I need more help”, especially in educational institutions and the workplace.
Policies like the British government’s plan to reduce the number of people claiming disability benefits (without regard for the number of people with disabilities) perpetuate the sadly still prevalent belief that those of us who have disabling illnesses which are not terminal or immediately visible are lazy, when nothing could be further from the truth.
The fact is, students with disabilities need better support. An attempt to understand and cater to students’ individual needs rather than just paying lip service to the idea of equality would be an excellent start.
“A diagnosis is just a tool to get you what you need,” said a good friend of mine, by way of his therapist. His statement particularly resonated for me because for a long time I’ve been a woman without a diagnosis. This article is about why I am finally OK with that.
First of all, it’s not entirely true that I don’t have a diagnosis: I’ve been given many different diagnoses by many different doctors. Some of these labels are simply descriptions: atypical facial pain, idiopathic neuropathy. Some of the labels don’t really fit me or have that lovely word “Syndrome” at the end of them, and I’ve become so aware of that word I eventually started telling people, jokingly, that I simply have Syndrome. Some of the labels given to me were taken away later, misdiagnosis: “you don’t actually have asthma, you have paradoxical vocal fold movement!” (a voice disorder that mimics asthma).
I have learned some huge lessons from all my time spent in the medical-industrial complex: doctors don’t have all the answers, and that a good doctor is one who says, “I don’t know.” Also, chasing after a diagnosis, endlessly, is a game with steeply diminishing returns. You might get a diagnosis that is wrong. You might never get one at all that gets you what you need, especially if what you need is outside the medical system entirely. I spent hours and hours with doctors and nurses, trying out dozens of medications, and in the end I accomplished very little. Meanwhile I invested all kinds of desperate hope that the next specialist might be able to help me. I am not advocating giving up hope: I am advocating having realistic expectations about the medical system. Investing all my hope, time, and energy in finding a diagnosis and/or treatment for my ailments was not effective nor enjoyable. Years later, I am basically in the same state of health that I was when I first got sick.
I have reached a place where I am quite comfortable not having a diagnosis. I’m sure the medical system does not agree with nor support this stance. Everyone must have a label, otherwise how will they know what box to put us in, which specialist to send us to?
I say about myself that I have chronic pain and illness. I have a disability. If people want to know more than that, I will tell them about my experiences, my feelings, my activities as a disability activist, the way I live my life. Many people seem to want a label, and for a long time I did too: something to say to the pharmacist, the people at work, my extended family; something simple, something people could understand. People understand things like migraines, like diabetes or anemia.
There are certainly concrete benefits to having a diagnosis: If I had a diagnosis I could use Google to learn more about my illness. I could perhaps find support groups populated by people with my same illness. I could perhaps get government disability benefits. These things are not impossible to get without a diagnosis, but they are harder to find. There are, for example, support groups and counselors for people with chronic pain, which my medical system eventually referred me to.
But what I really needed to find was the social justice community. What I needed, and eventually found, was disability identity. Right here are the tools I need to help me live a life with pain and illness. Here is a supportive community, coping techniques, theory, friends. A person doesn’t necessarily need a diagnosis to live here. ?
Lisa Harney is a single lesbian with ADHD, three cats, and a penchant for writing about social justice and transphobia. She blogs regularly at Questioning Transphobia.
So one of the most frustrating experiences of coming to terms with my disability is realizing just how much ableism has impacted my life without my realization. I mean, I knew that this stuff was not really fair or reasonable, but I didn’t really know why.
When I was in the first grade, my teacher told my mother she thought I had a learning disability. My mother’s goal was to prove that I had no disabilities at all, so she had my intelligence tested and I was categorized as “gifted.” It was also determined that I was nearsighted, which required me to wear glasses. Somehow, unfortunately, neither of these solutions actually helped with my problems: I had trouble retaining what the teacher said to me, and I had trouble doing all of my schoolwork.
In retrospect, being marked as gifted was mostly negative. It meant I had more pressure to perform well, that I should be a straight A student, but I never managed this. My report cards are littered with “doesn’t pay attention” and “doesn’t apply herself” and other negative assessments that read to my parents as “Lisa doesn’t fulfill her true potential.” Now, of course I wanted to, but to me grades felt almost like an arbitrary lottery. I never got grades commensurate with the effort I put into class, and no matter how much effort I did put in, I’d get in trouble when my report card had too many Cs and Ds. There was a reason I could make it to the spelling bee state finals and do calculations in my head, and yet still couldn’t maintain any kind of consistent quality of work.
This had repercussions at home. I learned from my father that I was stupid, lazy, inconsiderate, and selfish. I learned these lessons really well. I internalized them. Somehow I was convinced that I was really sabotaging my own school work. His conviction in my potential wrongdoing was such that he would grill me about what I did at school every day once I got home, and the right answer was always “I didn’t do my schoolwork.” If I said I did, I’d be punished for lying. So I learned to lie to him because the lie was the only acceptable answer. And he convinced me I was an inveterate liar, so it was interesting to realize once I got out on my own that I was total rubbish at it.
So yes, from most of my teachers as well as my father, I learned that I was pretty worthless; that I was stupid and lazy. That my problem was that I refused to apply myself and spent too much time daydreaming, or reading novels, or playing games (role playing games, mostly). That everything I enjoyed was a personal flaw, and that everything I failed at defined me. And this has stuck with me for a long time.
This carried through into my first long-term relationship – which was also abusive. But my partner liked to especially pick on my inattention, my tendency to zone out in the middle of a conversation, my forgetfulness, and insisted on treating me as if I was a child to be controlled instead of her girlfriend. She went beyond this, but this itself is apparently a common pattern in relationships with ADHDers – that a parent-child dynamic develops. This is often framed in articles and literature and by non-ADHD spouses and partners as something the ADHDer is totally responsible for, and relationship problems are often blamed entirely on ADHD, but the non-ADHD partner’s ableism is practically never discussed. And being treated like a child, having every mistake scrutinized and berated and everything you do ignored and forgotten takes a huge toll on you. It’s abusive. My partner was abusive in many ways beyond this, so I don’t want to make it sound like her ableism fueled all of the strife, but it definitely had an impact.
Every attempt I made to enter college hit a wall. I would do really well (and learned I was not in fact lazy or stupid) until I couldn’t anymore. I don’t really know how to describe it. I wanted to get my degree, but once I hit that point, college went from doable to extremely difficult. It may have been changes in routine, greater difficulty in classes, overall stress from spending that much energy to excel constantly without a break. I don’t really know. I just know that I would hit a point beyond which it was very difficult for me to continue. And that I didn’t even know how to find support or assistance, that I don’t feel resources for this were really clearly explained to me if they existed at all. And besides, maybe I was lazy and stupid, right?
Most of my jobs went the same way – I’d do a job well until I couldn’t keep it up any longer, and I’d often have to quit because simply going in was difficult. Again, this is hard to describe, how this works. It is not that I wanted to lose my jobs or that I did not enjoy them, but that I’d end up being unable to continue, or that I’d find it difficult to meet basic requirements like punctuality. And I’d be left wondering how I could have sabotaged this amazing job, and how lazy and stupid I must be and how much I must hate myself to make these choices.
And this really was a spiral of self-hatred and recrimination that continued until the past few months. That I was holding myself to standards I had no idea I couldn’t attain without help, medication, accommodations. That my knowledge of ADHD, the background cultural knowledge was so lacking in information that I really had no idea how to start looking into this, or even that there was anything to look into. I spent more time wishing I had done everything better, that I hadn’t made so many mistakes, that I hadn’t lost two promising careers, that I hadn’t apparently done everything in my power to block my own success. That I had no idea I was not only limited because of my neuroatypicality, but because there simply wasn’t any easily accessible information that would have helped me realize what was happening to my life. Even when I saw doctors about my GAD and panic disorder in 2003, the possibility of ADHD never came up.
Since I wrote my two posts about ADHD on Questioning Transphobia, I’ve had several people tell me in comments, e-mails, or chat that they related strongly to the symptoms I described, that by making my experiences with ADHD accessible, people who have been undiagnosed so far – who might themselves have ADHD – know about the possibility and can respond to that information. According to at least one researcher – Dr. Russell Barkley – it is possible that only 10% of ADHDers who have gone undiagnosed into adulthood are diagnosed as adults.
I am not saying that experiencing ableism without even realizing you have a disability – let alone what ableism is – is worse than experiencing ableism when your disability is known. Just that it was a dark moment for me to realize how much of my life has been defined by ableism, and how much I had no defense mechanisms at all to cope with that and how much I had to realign my own understanding of decades of my own life. The end result is good, in that I was able to resolve a lot of my own self-hatred, but the realization itself was a bit shocking.
Interested in submitting a guest post to FWD? Read our call for guest posts here for more information!