Guest Post from Lisa: Invisible Ableism

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.

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By 29 September, 2010.    guest post, identity, introspective, invisibility  ,  



17 Comments

  1. I know exactly what you’re talking about. I have ADHD, too, and wasn’t diagnosed until 2005 – when I was 28. I recently got the diagnosis re-confirmed and am about to go see a doctor about getting back on medication. I know that I can’t keep struggling the way I have been.

  2. Thank you for writing this, and FWD for posting it. I too relate to a lot of the things you describe. Unfortunately the things I need help with are the very things that make it difficult to get help and round and round it goes. It’s also hard to sort out all the conflicting messages.
    DDog´s last blog post ..Transrelating 007- A Response to Trans Film with Nobilis Reed- Part 2

  3. This post is me with different pronouns- relationships, schoolwork, gifted courses, jobs, college, anxiety, blame, self-hate, everything. Everything.

    I seriously thought it was just me.

  4. Thank you, thank you, thank you! My life has gotten so much better since diagnosis (at 38) and treatment, but I’m only still piecing together and allowing myself to see all the ways I’ve been hurt by ableism, beyond ADHD itself. I’m also only beginning to learn how to own my disability and create modifications and accommodations for myself. And there’s still a voice in my head saying, this isn’t a real disability, you could just work harder/get organized/try more. So thank you for writing this and thank you, FWD, for posting this.

  5. Oh, wow, Lisa, I’m sorry you were treated so badly for so long!

    It’s also an interesting point you make about being identified as gifted actually making your school experience worse — do you think it would’ve helped if you’d been IDed as gifted *and* ADHD, with whatever accommodations your school could’ve offered for the latter thing — deadline flexibility, for instance — or do you think it would’ve been best for you never to have been seen as gifted at all?

    I also wonder if you ADHDers might come in for an unusual amount of “oh, you’re not disabled, you’re just lazy/stupid/unmotivated/whatever”-shaming due to Western cultural values putting a premium on sustained over sporadic effort, or regular habits over irregular ones? I don’t know, obviously any disability is going to come with its own constellation of Horrible Things People Think It’s OK to Say/Do to You, but I also think some of them conflict with cultural values in ways that somehow exacerbate the shaming. (Another place I think this happens is with autism and eye contact). What do you think?

    (I’m glad, too, that you’ve been able to rid yourself of a lot of the ableism and self-hatred you internalized — it can be very hard for non-neurotypical people who spent large chunks of their lives undiagnosed to stop blaming themselves for any troubles they continue to have.)
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  6. This is basically me from mid-university on, when I first developed depression. I seriously doubt I’ll ever manage to hold down a job for more than a year, or go back to school. My counsellor, who has ADHD himself, tells me it’ll be different with accommodations, but still…

    Tangential: in my experience, once you’re identified gifted they don’t bother screening for learning disabilities—because they think gifted means “high intelligence” and LD means “low intelligence” (never mind that “intelligence” is rubbish) and so the two must be mutually exclusive.

  7. I’m glad this resonates for people. I’m not even close to done to figuring this all out, either, and it’s not like I’m free of internalized ableism. I still start to think somewhat regularly that I don’t really have ADHD, that it’s just a convenient excuse to pin all my failures on. I need to work harder, etc (like Michelle said above). Thank you for the comments – they’re good to read and validating.

    Lindsay,

    Thank you – it wasn’t fun, and I still have arguments with my mother about this. She thinks that reminding me that I was invited to join MENSA at 6 or 7 should cancel out the years of hearing how worthless I was. She really won’t even give me space to talk about it, instead thinking I was reassurance when I’m really so much over that. I want her to understand what it was like for me to go through that because right now my nieces and nephew also have ADHD, and my mother tends to assume they should be able to do some everyday tasks that are not simple for ADHDers, and she doesn’t connect how I describe my experiences to what she’s saying about them.

    As for the western values you mention, I think that’s exactly it. I mean it’s not unique to ADHD? But the diagnosis itself is treated as trivial, while the symptoms are treated as moral failings, so yeah, I think this does exacerbate the shaming. (side note: I have trouble with eye contact as well, although I think it might be GAD? I don’t know)

    Giftedness and diagnosis – I agree with Neville. I mean that’s how I was treated. “You’re smart? No LD!” But also, I know several ADHDers who have been diagnosed as children and it didn’t necessarily make things easier for them. Many didn’t receive consistent treatment as children, many went off treatment as adults (and many were assumed to simply outgrow it). It was more, like…my mother decided to prove I had no disability rather than try to have me checked out for one, as if having one would be a personal failing for me and a black mark on her record? I do wish I had known sooner, but I don’t think it necessarily would have made school easier.

  8. Oops: Not that ADHD is a learning disability. But that was the suspicion because I was having so much trouble. And I don’t know, I might actually have one of those as well.

  9. There’s actually a lot of material out there about the combination of giftedness and learning disabilities.

  10. I really really relate to this. I only just found a few years ago that my first grade teacher told my mom that I was more than likely dyslexic. Instead of getting me tested my mother never told me. She said that she didn’t want me to “develop a complex” or some such nonsense. In elementary school she would go in to the first parent teacher meeting and give my teachers a heads up. Later on she did not do that. I guess she figured I’d gotten by ok so far so she didn’t feel the need. I started taking advanced classes at I really young age and ended up in a really advanced program in high school. I had trouble with certain things that others didn’t. If I had known I could have found ways to work through the problems I was having a lot easier. Instead I ended up getting mad and would blame myself for everything. It’s very frustrating to me now because I can remember so many times that I struggled and could not figure out what was wrong. Those times make so much more sense to me now.

  11. Lisa, I’m so sorry you went through all this. I can relate to your childhood experiences. I was identified as gifted, too, and my parents tried everything they could to deny I had a disability (other than blindness, which they couldn’t deny). Well I don’t have ADHD but I have autism, which creates its own set of problems that got em labeled as unloveable, antisocial, lazy, etc. At this point, I struggle very much with having internalized these beliefs. Thank you for writing this post. It resonates so much with me.

  12. I was being constantly told I was “gifted” from quite an early age until I was about 12, and it was used as a cover on occasions, such as when my first secondary school decided they didn’t want me anymore, so I was told that I was being moved because they wanted a school that would stretch me more academically. The move was to a two-bit private school which kicked me out after two days. After that, I was sent to an ostensibly special boarding school for kids with a high academic ability with behavioural problems; what they were actually doing was mixing up kids with autistic spectrum disorders with kids who weren’t wanted by other schools because they were thugs (and several of the teachers met this description also). Most recently, I asked my aunt (who happened to work in the same department where all the decisions were taken) why I was sent there instead of to the Steiner school I had been taken to visit a year earlier and she said, “well M., the elephant in the room was your ability …” as if that was more important than protecting me from being abused.

    At the boarding school, the story about my “ability” changed — ability or talent wasn’t respected, physical prowess (and willingness to use it) was, people told me to my face that I was thick, and knew nothing because I hadn’t come from a chaotic background like they did. (I’ve been told so often that I’d never survive in this or that place, and on one occasion it was the place I’d been living for years.)

  13. I have long thought of being “gifted” as being a terrible label to be assigned, but I hadn’t put together before how that tied in with my ADHD. For me, it was a way to explain away any strangeness, as well as setting high expectations. I was weird, and so it was my fault if I didn’t fit in socially; after all I’m gifted, I should make allowances for everyone else. I was supposed to not complain about classes, because I was gifted of course I was bored. I was supposed to not use up valuable classroom time that the other kids *needed*, even if my impulsiveness made sitting on my hands and not participating physically painful. My mother used to say, “parents of smart kids boast, parents of gifted kids sigh.” If I had just tried harder, the messages went, I could have been normal, apathetic and less lazy.

    I completely identify with both the crap shoot of grades and the constant comments. I once got a report card that said: “A: Meg is not living up to her potential,” and pretty much gave up. I only got through high school because so many teachers were willing to let my papers slide in light of my enthusiastic and frequent classroom participation.

    I’m only now figuring out the ways having my ADHD ignored and erased influenced my life. It wasn’t as though it made it go away; it just meant that every day I had people telling me that I was wrong, my perceptions were invalid and refusing to make any accommodations for how difficult things were for me. I don’t know that having a diagnosis would have changed that dynamic, but it might have provided some small amount of validation.

  14. Zoom, thank you for the link! Reminds me of how much the material on dysgraphia annoys me lately, though (which yesterday, I forgot it was a learning disability, and one I totally do actually have)

    Cassandra,

    Yeah, it’s really frustrating, isn’t it? In so many ways finding out was just a huge relief for me. And it’s really annoying that stuff like that gets hidden away, like not knowing and thus not always able to understand or cope, is supposed to make it easier? Sympathies.

    Astrid,

    I’m glad it resonated. It’s frustrating to deal with people who think “under the carpet” is better than any understanding. Sympathies that your parents tried to hide and hide from your autism. 🙁

    Indigo_Jo & Meg,

    I’ve really grown to hate having been labeled as gifted, I think. I mean it’s sort of been percolating and I guess this post dug up a lot of my bitterness about it. I still have some bitterness about how I supposedly have all these talents, but I can’t access them efficiently because of ADHD, and I think part of that too is being raised with the idea of “You can do anything, if only you apply yourself.” Except of course that was so not true, and I still have a hard time with that even though I know I that I didn’t ever have the tools to cope with one to deal with the other.

    I did get a lot of “I was too bored to deal with schoolwork” too, which still drives me up the wall. I mean I believed it at the time, but I found in college that I was rarely bored at all, and I still had trouble. I do think that “gifted” was pretty harmful to me because it eclipsed and trivialized my own real challenges in favor of a narrative that said I was too smart to be contained by a single school, or whatever.

    And really, I think even that was pretty exaggerated. I don’t really know how smart/talented I really am, because whatever I am thinking? What I end up doing is generally not up to the standard I think was expected of me.

  15. It can’t be said enough times – thank you for writing this piece. As you are reading, there are many more of us out there with similar experiences and hopefully what we went through can help those going through it now and those that hopefully don’t have to go through it in the future.
    Your story and those of the commenters could just as easily be mine: same “gifted” anchor draped around my neck, same “you must be bored and not challenged enough,” same move to a private school, etc. All of it off the mark and none of it helpful.

  16. That everything I enjoyed was a personal flaw, and that everything I failed at defined me.

    Change a couple of sentences, and you could be writing about my life. Wow. My parents also called me lazy. They knew I was smart (I was also “gifted”) and just didn’t understand why I wasn’t getting terrific grades all the time. In a way it became easier to disappoint them, because I knew if I lived up to their expectations once, I would be expected to do it again… and again…

    And their opinion, that I was lazy and if I could only do my schoolwork they would be proud of me, has given me a huge burden to carry into adulthood. I feel like they never accepted me for who I am, flaws and all, and so I have trouble accepting myself for who I am. You briefly mentioned anxiety disorders–I have them too, and I’m pretty sure a large part of the reason is because I had ADHD. I learned that I could never just trust my instincts and do what I felt like doing, because my instincts were WRONG (according to everyone else), so I always questioned myself and doubted myself, felt like I could never get anything right, and that led to a lot of anxiety as well as depression. Both of which have at times been disabling. Disability on top of disability.

    Since I got out of college (I did manage to finish–got diagnosed with ADHD halfway through. It was still rough going, though), I’ve been astounded at how much I love learning. I just love to do it at my own pace, on my own time, and in my own way. I tried to go to graduate school, but I ended up dropping out because I couldn’t take the assignments, the deadlines, the tedium of lectures. My anxiety and depression returned swiftly in that environment and threatened to overwhelm me, so I quit. Everyone acts like quitting school was another failure of mine and I should have just “stuck it out,” but to me, I was protecting my own mental health.

    I still don’t know how to properly ask for help and accommodations, because I have internalized the belief that I don’t deserve them. I would look at my fellow grad students and think none of them are struggling the way I am, but they have the same amount of work to do or more, so I should be able to do it too, and if I don’t, I have no excuse. I never know what kind of help I would ask for anyway, because the reality is that school isn’t built for people like me. I loved the discussions with my classmates and sometimes I was interested in the reading, but everything else was nearly impossible for me. My anxiety from years of struggling with school didn’t help.

    You have no idea how freeing it is to say these words to someone who will understand them (or maybe you do)–I’m always afraid to talk about it because if I do, I will eventually come across the attitude of “you’re just lazy.” I never know who’s going to think that way, so I’m afraid to open up unless I know the person knows what I’m talking about.

  17. Thank you Alex and notemily, I’m glad that my post resonated (well, I’m not glad to hear how many others went through this crap – no one should have to go through it!).

    notemily,

    Thank you. I have two of the most common comorbid conditions for ADHD (depression and anxiety) as well, and those have a significant impact on everything on top of the ADHD itself.

    You have no idea how freeing it is to say these words to someone who will understand them (or maybe you do)–I’m always afraid to talk about it because if I do, I will eventually come across the attitude of “you’re just lazy.” I never know who’s going to think that way, so I’m afraid to open up unless I know the person knows what I’m talking about.

    I had a hard hard time writing this post because I kept making it too personal but also I felt like a lot of it could be trivialized, you know? It’s really freeing to hear how many people have gone through the same thing, even though I wish no one had. And I have tried to talk about this with others, and it’s really hard to get very far because many seem to want to imprint their own meanings on everything, or get defensive because of their own assumptions.