Internalized Ableism and The Job Hunt; Or “Why Don’t I Believe It is Better Not to Die?”

When I was a kid, becoming the second-wave feminist “Woman Who Has It All” was presented not as an option, but as a requirement.  I had to have a full-time career, maintain my own house, get married (to a dude only), have children, and look good doing it.  Oh, and I had to be the primary breadwinner, too.

Taking the partial package was never presented to me as an option.

I ditched the “have kids” demand pretty early – tocophobia set in right about the time I figured out that when the “where do babies come from?” book talked about fetuses developing inside the uterus, it means that to have a baby, a fetus would have to develop inside my uterus.  No the fuck thank you.

But, of course, refusing to have kids meant I was merely expected to work harder at everything else.  Kids were the one excuse to be “sloppy” or “lazy,” to have a messy (but immaculately clean under the clutter) house or to take a part-time job for a while (but never to stop working entirely).  If I didn’t have kids, then my career needed to occupy more time in my life than my mother’s career had occupied in hers – and my mother worked 60-hour weeks my entire childhood.  (I did our laundry before I was tall enough to reach the controls on the machine.)

The pressure wasn’t merely from my mother, either.  It also came from school.  I was “smart” enough to have a “real career,” so I was expected to have one – but, being a girl, I was also expected to manage a household, raise kids, please a husband, and look good doing it.  Sure, I was told “you can’t have it all,” but neither was the expression of any choice treated as valid if it excluded some part of the “have it all” package.

Meanwhile, the lack of a diagnosis and the achievement of so-called “indistinguishability from peers” (I entered a mainstream kindergarten class and was promoted from year to year) meant I had zero support for my biggest developmental challenges – all of which related, and relate, to executive function, autistic inertia, and faking non-autistic social dances.  I wasn’t disabled; I was “lazy,” “inattentive,” “thoughtless,” and “selfish.”  What I needed, the adults all agreed, was more chores, more homework, more responsibility.

I looked forward to the day I could work 60 or 70 hours a week and then go home to my very own house.  That sounded like a damn vacation.

So I internalized this message: that I wasn’t allowed to work less than full-time, that I was so “smart” that only a fast-track to a prestigious position would do (I really believed that  making partner/tenure less than a full year early constituted a failure), and that my house, marriage, and makeup had to be Stepford-perfect at all times.  I also internalized the message that every one of my struggles was my fault for “not trying hard enough” – and I was told repeatedly in childhood that “there are places for children” who don’t try hard enough.  Places like prison, the state mental hospital, or the gutter.

So if I failed to do anything in my adult life less than perfectly, I failed it utterly.  If I failed it utterly, I didn’t deserve to live.

Guess how long it took me to burn out.

I crashed the first time during law school, at about age 24.  It wasn’t a full crash, and since the only thing I had to do was appear in class, memorize an outline the day before the exam, and not fail (it is nearly impossible to flunk out of a top-tier law school once you’re in), I managed to keep taking classes while I dealt with it.  Everything else went by the wayside.  My competitive skating career ended in an instant.  I started treating popcorn like a food group.  My abusive boyfriend got more abusive because I was spending less time catering to his whims.  But taking a semester off was unthinkable.  As in, it literally never occurred to me.  I was too “smart” for that.

I crashed the second time at the law firm, at age 27, after a year of working 70 to 80 hours a week, straight through weekends, at a salary that wouldn’t pay the medical bills I was racking up to do it.  I had to stop that time.  That July I was hospitalized after having not slept for five straight nights.  I was hallucinating.  I had stopped eating.  I had no friends, no hobbies, no support group – nothing but agonizing, unrelenting pain and nausea.

I didn’t stop in July of that year.  I quit the law firm job in August, after I was hospitalized for a suicide attempt and a doctor finally put the whole damn thing into words even my exhausted brain could understand: “if you do not quit now, you will die.”

That two weeks I spent in the hospital was the first vacation I had ever taken in my entire adult life.

That September, the same doctor gave me my autism diagnosis.  The following June, eleven months after the insomnia episode and ten months after the suicide attempt, he told me I was “just about ready to go back to work.”  I laughed at him.  I had been freelancing from my bed for the previous nine months and had built a viable business.  It wasn’t that I needed the money; I was already living with my dad and stepmom, who are reasonably well-off, and they would have paid my bills if I’d asked them.  I worked because I thought that if I didn’t, I didn’t deserve to live.

That episode really wrecked my health.  I was bedridden for the next several years; I didn’t even begin climbing out until I was 30, and it’s only been in the past two years that I’ve gotten anything like my pre-first-crash health back.

But I almost didn’t.  Because as soon as I got back on my feet – literally – I enrolled in graduate school.

See, being almost killed by my law firm job hadn’t made me realize that trying to be “indistinguishable” was killing me.  It only made me remember that I never wanted to be a lawyer in the first place.  I went to law school because what I really wanted to do, which was to be an English professor or an editor or a writer, was always denigrated by my mother and my teachers.  “How are you going to get a job in that?” they asked.  “There are no jobs for English majors.  You can’t expect us to support you forever.  Do you want to be a barista your whole life?”

When I left the law firm, the JDs to jobs ratio in the U.S. was 100 to 1.  The PhDs to tenure-track English positions ratio in the U.S. was 5 to 1.

(Don’t believe the grownups, kids.  Do your own damn research.)

I also went to graduate school because I wasn’t allowed to not have a career.  I wasn’t allowed to not work.  But when I went to graduate school, I couldn’t just go to school.  I was the primary breadwinner; I had to work as well.

So I worked.  In graduate school.  Racking up 60 or 70 hour weeks, again, between classes and teaching and work-for-pay I did to make up the significant difference between my graduate stipend and the cost of subsistence in our hometown.  I didn’t know what else to do.  If I stopped being 500 percent better than anyone else, I’d die.  I wasn’t sure of much, but I was sure of that.

I was 31 when I started the Master’s degree.  At 33, I burned out again.

This time, I didn’t hallucinate or try to kill myself – I developed a non-stop migraine that, after twenty years of medicating non-stop migraines, I had run out of pharmaceutical options to treat.

This time, I spent three weeks in the Cleveland Clinic.  This was the second vacation I have ever taken in my entire adult life.

They asked me what was going on, why I was so overworked.

I said, “my problem is that I have four jobs and I really need to only have three jobs.”  It wasn’t sarcasm.  I really believed this was the case.

The doctors glanced at each other.  Then they put the whole damn thing into small words for me: “if you do not quit now, you will die.”

I guess the second time’s the charm.

I came home, quit teaching English at the local university, and put strict boundaries around the rest of my work: two hours a day freelancing, two hours for AutPress, two hours on academic stuff.  Two hours period, not two hours of focus plus whatever time running around dealing with other people’s email whims.  Five hours a week for coaching winterguard, because I need to be the adult I never had in my corner as a child.  Nothing. Else.

I started playing video games and going for long walks.  I started practicing saying “no.”  I started learning how to ignore my phone.

35 hours a week.  I literally cut my work hours in half.  And although I did it to save my own life, I still feel like absolute shit about myself for doing it.

Because 35 hours a week, to a person who has been told since toddlerhood that she has to work harder than anyone else and be 500 percent better than everyone else?  Is murder.  It feels like the end of the world.  It feels like I have completely given up – like I really am the lazy, dirty, flighty, thoughtless, selfish bump-on-a-log I was told I was in childhood.  It feels like I will never accomplish anything, like I will never matter.  It feels like my entire world could be taken away from me in an instant because I am not worthy of having it.  Those “places for children like you” loom large in my mind.

Cutting my work hours did not, by the way, make Stepfording the rest of my life any easier – because I’m autistic, and I always have been.  My ADLs are still complete shit.  My housecleaning abilities are so bad we actually hired someone to do it for me.  I can’t work out how to eat anything that involves more steps than “open, microwave, put in face.”  I quit wearing makeup and uncomfortable shoes so I could think.  My daily uniform consists of leggings and a long-sleeved T-shirt purchased at my local Costco.

I stopped trying to perfect my household or appearance for the same reason I quit working: because if I do not stop putting in unsustainable effort, I will die.  And Stepfording my life was unsustainable.  My ADLs are shit.  At 33, I’m not likely to “grow out of” my ADLs being shit, as I was always told I would as a child (when I was not being told I was shit for having shit ADLs), and it’s time to stop pretending I can.  If I do not quit this, I will die.

But replacing the impossible fight against my ADLs with coping mechanisms that allow me to focus my energy on what I can do (like make money to pay the housekeeper) nevertheless manages to make me feel like shit.  “I am a failure as a person if I cannot maintain my own house,” my brain whispers.

The internalized ableism astounds me, as does the self-criticism and self-loathing. I would never treat anyone else a thousandth as harshly for making this choice as I treat myself.  Dealing with the PTSD flashbacks my 35-hour workweek generates is a battle that consumes a large part of the now “free” 35 hours.

I cut my workweek in half because if I did not, I would die.  I did it to save my life, but I struggle daily with the thought that because I did it, I do not deserve to live.

This is what “high-functioning” looks like.  This is what “indistinguishable from peers” looks like.  This is what “doesn’t ‘really’ have support needs” looks like.

It looks like working from home because I cannot both navigate a public space like an office and do meaningful work.  Working from home should be such a little thing.  I do meaningful work.  I do work I get paid for.  I make just under 50 percent of our household income. I get regular praise and semi-regular raises for what I do.  I use all three of my postsecondary degrees every single day.  Some of my work is actually changing the world, in ways I could only dream of changing it when I worked in insurance defense.  If we’re going to measure human worth by economic output, then by all rational measures, I am pulling my own weight.  There’s not a damn thing wrong with what I do or how I do it, except to my own brain.

Working from home is a big thing for my brain.  My brain is convinced that because I work from my couch in leggings and a hoodie, I am worthless.  That because I do it only 35 hours a week, I am worthless.  That because my bookshelves go un-dusted and the dishes wait for the weekend, I am worthless.  That because I make “only” 46 percent of our household income instead of 51 percent of it, I am worthless.

Autism is a disability.  It’s damn hard to have a job outside our own homes in a world that is not only not designed to accommodate our brains, but is often aggressively opposed to accommodating our brains.  I work from home because I cannot juggle the demands to do excellent work and to fake non-autism excellently.  I can do one at a time.  Both at a time almost killed me.  Twice.  Before age 35.  If I want to work at all – and I do – I must do it in an environment whose inputs I can control.

But I hate myself for that fact, because I have been taught that I’m not allowed to be disabled.  And although I’m working hard to divest myself of that belief, the oldest lessons are the last to die.  I have never been allowed to be disabled.  Now I’m learning how – 35 hours at a time.

 

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24 thoughts on “Internalized Ableism and The Job Hunt; Or “Why Don’t I Believe It is Better Not to Die?”

  1. oh my – i hear you, i salute you – what an excellent insightful and sobering article! that is amazing and the best words that i want to use have definitely failed me: but yes, me too, except i’m just running faster and faster – still – after all those warnings, like they were nothing… running from, or running to? thank you 🙂

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  2. I wish i could cut down my hours and work from home instead. I’m wearing myself out with the MBTA and sensory issues.

    I would like to make my dream of becoming a writer/musician come true.

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  3. Damn! If this helps you even one iota, for one millisecond: thank you! My world wasn’t quite so blatantly harsh, and I wasn’t diagnosed until adulthood, but I have the same shit running through my head about “doing it all, never ask for help”. I still can barely let myself stim or sensory diet or anything else that would improve my life, but I feel like I’ve just been given permission to do so. Thanks for your raw vulnerability and sharing.

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  4. Good post, but the family culture you describe sounds absolutely insane – working 60 – 70 hours per week is not “normal” or doable, virtually no normal person would be able to do that for any significant period of time without crashing… AND then you’ve got low pay… AND a disability… AND no holidays… That’s like a recipe for a burnout regardless who you are (perhaps with a few supernatural exceptions). Where I come from, everyone who works full time automatically earns 5 weeks of paid holiday per year, that is the law… and full time work there is 38 hours/week. Here in Australia where I live now, full time is officially 35 hours/week, although some people do work much more than that. In most developed countries, as far as I know, full time is around 40 hours/week, but then that doesn’t necessarily mean productive hours.

    I’m more surprised that your mother was able to keep up 60+ work weeks (AND kids!)… THAT is abnormal, your (in)ability to cope with such insane workloads in the long run is normal in this regard, hers (and similar peoples’) expectations are not.

    Also, whether you work from home or an official office is irrelevant.

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    1. Studies have shown that productivity decreases after about 38 or 40 hours of work per week. There’s a whole bit of American culture where we take pride in working more than 40 – especially if we are not paid overtime and most of us aren’t – but it’s actually the opposite of the “productivity” we like to think it is.

      60 was normal in my mother’s line of work (health practice management). It’s also normal in law and a little bit low for university professors. And we wonder why stress-related diseases are so high here….

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      1. Productivity is part of the argument for a short work week. Short as in 35 – 38 hours/week instead of 40…

        60+ hours/week is not even ever on the table, since overworking is an obvious mental & physical health hazard to most people. The context is of course that in most developed countries, medical care is free… and higher education is typically fully or partly government funded. Since society invests heavily in everyone’s education, health and development, a hazardous work culture leading to mental or medical illness and burn-outs is obviously undesirable, since society has to foot the medical bills and rehability broken individuals… so everybody pay for the consequences if people get overworked.

        So I’m speculating if the lack of public funding of healthcare and education could play a role in American culture being so accepting and encouraging of hazardous work hours … since when individuals break down then the employers, the industries, the taxpayers, the economy as a whole etc are all largely unaffected. Failure to cope may be seen as strictly THOSE individuals’ problems, “The Losers”, the failed ones in the gutter. Everyone else can pretend that those just didn’t try hard enough, and it will never happen to anyone who REALLY try. And when individuals don’t break down, then these are looked up to as role models.

        I don’t know, I am just guessing. Generally, in the countries I know from the inside, people would be looking for systemic failures first rather than blaming individuals if people break down because they can’t cope, they would be looking at health statistics correlations for connections

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      1. It is not a job offer-thing, it is the law. All employers have to pay a certain amount per employee work hour (or something like that) to the government-run Holiday Fund. For a full time worker (38 hours/week), the total amount they can get paid out from the Holiday Fund when they apply for their leave equals 5 weeks of paid leave per year. However, it is not necessary to take it all every year… it can be saved up & rolled over, accumulated to use for e.g. travel. However, most employers don’t like accumulated leave in my experience, they’ll usually encourage people to use up their accumulated paid leave days/week regularly.

        Also, you can’t just get the money paid out and then work anyway, you get the money for a particular period when your leave application for that period is approved by your employer, and it would be illegal for the employer to allow you to work during your leave period.

        (the details are a bit old, since I left my country 10 years ago, but I know it is still the same system)

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  5. Thank you for this. I’m high functioning as well, and have numerous other diagnosed conditions on top of the asd, and… I just really needed to know that I’m not the only one.
    Thank you.

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  6. Thank you for posting about this. Reading about your experience helps me to continue to put my own experience in context. I feel sad to know that so many people like you and above commenters and other Disabled people I know still have such trouble exercising the brain weasels that tell us we have to be something we can’t be.

    I remember coming to terms with the fact that my body simply would not support me working at all. I have had dysautonomia since at least as early as puberty, and its effects have only gotten worse in the decades since then. Since I finally had to drop out of Uni back in 1991, I have never been able to work and was never successfully able to return to school. And I didn’t know what was wrong with my body. It wasn’t till many years later that I learned that I’m Autistic and another couple of decades later that I learned that my “chronic fatigue” and “fibromyalgia” were in fact due to dysautonomia (which in turn is due to my Ehlers-Danlos syndrome).

    In all that time, I never fully learned to value myself and my life as someone unable to work. But eventually, after burning out at a volunteer job with a disability self-advocacy organization over the winter of 2014/2015, it dawned on me that for the previous few years, what had I been doing? I’d been advocating for the right of people unable to work to be treated with dignity and supported to live fulfilling, happy, self-directed lives. In other words: if it were okay for some Disabled people not to work and still to see themselves as fully human possessing innate dignity, then why wasn’t that good enough for me, too?

    So I resigned my position and took up relaxing activities and gradually disengaged my brain from clinging to the notion that I had to justify my existence by doing work — albeit volunteer work — recognizable to an arm-chair economist as “work”.

    I’m feeling much better than I did this time last year, but I know I have a long way to go. Your post helps me understand why it’s taking me so long to internalize my inherent worth: societal expectations are brutal and ubiquitous. It’s hard to get away from those messages, even when we are shown the high toll it can take on us to heed them.

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  7. I was thinking about how I have so much less in common with this post than with the X-Files one I just squee’d all over.
    And…
    then i realised that “i am not like this; i’m lazy; i hardly work at *all*” is uh, not the tape i meant to be playing, and i don’t remember putting it on, either.
    And *then* i remembered that i am EXACTLY LIKE THIS;
    it’s just that i broke younger than you did.
    (and now i am crying.)

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  8. I burnt out on only a 40 hour week after 3ish years. I’m trying to put it all back together before the finances go down the pan. It’s unlikely that, even as a UK citizen where disability benefit is available, I will get any kind of financial support to help me live and work in a sustainable way.

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  9. I found your blog and this post early this morning as I was scrolling through facebook. I’ll start with thank you. I can nod my head with recognition in a number of places in your post. I was born in 1961 and grew up with frying up and bringing home the bacon,” Because I am a woman, W. O. M. A.N., and Helen Reddy, “I am women, here me roar in numbers too big to ignore”. Nothing against being a strong women, simply the message that we had to be and do it all, and then some. No room for anything else.

    Then there was the value of your worth placed on what you did or did not do and there were very clear definitions for that in the world around me, though our family said one thing and did another. I was diagnosed in December 2014 at age 53, after 53 years of trying to fake non-autism and I did not even know I was autistic. Just that something was really wrong, and I truly and deeply thought it was me. I tried to do it all, mother, wife, student, employee, college student – who others told me I was supposed to be, and caring for ill family members.

    I too crashed, in 2008. I spent the better part of July 2008 hospitalized through a total of three separate admissions while they (they being inept medical personal) diagnosed me with PTSD, Depression, and OCD. They never looked for autism (that came later when I on my own kept looking knowing there was something missing). For me that period of hospitalization was also the first time that I had ever taken a vacation.

    I admitted myself to the hospital and a behavioral health unit after I had stopped eating for the better part of a month and had lost over 30 pounds and was burning muscle tissue as fuel. Being in the locked ward was one of the best things I ever did for myself. It was the beginning of taking care of myself and listening to myself after decades of listening to everyone and everything but.

    Since my autism diagnosis at the end of 2014 I’ve been re-framing my life through this new lens of who I am. Relief at my diagnosis, I’m not crazy, has been interspersed with anger that it was never seen until 2014, to sadness and mourning at what I feel has been lost, to hope that with understanding things are getting better.

    So many of the things you shared here are things I have dealt with all of my life. Value placed on what you can contribute has been huge all of my life.

    You said, “If we’re going to measure human worth by economic output, then by all rational measures, I am pulling my own weight.”.

    My problem is that this is how I have measured myself (financially), yet living with constant anxiety, for as long as I can remember, sensory processing challenges, childhood illness, auto-immune related fatigue and all that goes along with how I am as an autistic women has led me to measure myself as often worthless. I’m working on that personal worldview now.

    I have helped raise three amazing children, cared for our home, contributed to the world in many ways but it just does not seem like enough. Lots of old tapes playing.

    I too spend my days in comfortable leggings (usually fitted yoga pants) and long sleeved shirts. I like the compression feeling of the leggings and it helps my grounding.

    My ADL’S are not so hot either. I can do it, and having said that, it’s exhausting. I can get overwhelmed before I begin at where to start first. I don’t think it was as difficult when I was younger, or maybe it’s that as I’ve gotten older I care less about trying to fit in, or to please others, or I just plain don’t have the energy – emotional or physical to keep up the pretense any longer.

    I love your term “Stepfording” and I’m going to share that with my husband and therapist. I remember when that movie came out (the first one) and I could relate.

    After living my life to date being and doing what I thought I should be doing I’m now trying to figure out what is meaningful to me.

    I can’t begin to tell you how many times I was told I was not trying hard enough, or that according to my grandmother, there was no such thing as can’t, just that you won’t (her words).

    I had never heard the term “autistic inertia” until this morning when I read your post. That’s a thing. Wow. Another place I’ve found a bit of my identity. Thank you. Thank you for giving of your time to post and share. My day is brighter and lighter for it.

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  10. vladiiidraculea, I read your post after replying to Dani Alexis’s original post.

    I want to express my thanks to you as well.

    Part of your comment, ” I’d been advocating for the right of people unable to work to be treated with dignity and supported to live fulfilling, happy, self-directed lives. In other words: if it were okay for some Disabled people not to work and still to see themselves as fully human possessing innate dignity, then why wasn’t that good enough for me, too?”, was so important and spot on for me to hear.

    Your comments touch on a large part of my therapeutic process with my doctor right now. Struggling with justifying my existence and inherent worth. My innate dignity. Just because. Thank you. I really needed to hear that.

    Liked by 1 person

  11. So, I’m in Cleveland, and I’m trying to find someone to evaluate me for autism, and I am having next to zero luck. I don’t know if you’re actually in Cleveland or you have any suggestions, but I’d welcome anything you could tell me, because the above post sounds awfully familiar.

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    1. I’m actually not (I traveled from out of state to visit the clinic), but I have friends who are. I’ll ask around.

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  12. I will preface this by saying I am not on the spectrum, but much of this post resonated SO MUCH. Most of my life has felt like if I’m not running on the raggedy edge of exhaustion and achievement all the time, I’m not doing it right or being lazy. That is a harmful attitude. I’m coming to recognize it. But I do still struggle with that need to overachieve all the time, especially as someone with two liberal arts degrees who probably will never pull a high salary.

    I guess what I’m trying to say is thank you so much for verbalizing this. It is kind of reassuring to know it isn’t just me, and I am glad your work/life situation is in a better place now 🙂

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    1. This attitude seems to be rampant, whether one is autistic or not. And yeah. Killing ourselves is not helping anyone. ❤

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