No More Denial: Disability And Me

11Nov09

Most of you may know by now. I have Attention Deficit Disorder. Technically Attention Deficit Hyperactivity Disorder: Inattentive Type, as the new DSM edits have revealed. I was diagnosed a while back, even medicated. I’m not currently as the stimulants trigger my IBS and I need a new diagnosis to get back on any med, even a non stimulant due to complications from being trans (the doctor who has the records doesn’t know and I risk myself by revealing to him.) Oh yeah, I have Irritable Bowel Syndrome too.

I’ve been dealing with this for most of my life, maybe all of it. School was rough, basic tasks were rough, hell life was rough because of it. Still is. Focusing on basic things, on everyday life things like chores, eating and maintaining stuff like even this blog is a constant battle. I fight a fog in my head, a thick, unyielding obscurement constantly, the defocusing which makes it all but impossible to hold myself to a single task for any period of time without bouncing to something else all while not even realizing what just happened. And then there’s the entrapping web of hyperfocusing. One single thing pulls my attention so hard, as the light switch of my focus is flipped to all the way on, and I lose everything else around me: Pain, verbal communication, other tasks, people, etc. Everything disappears as I zero in.

ADD is when the dimmer switch of attention, one’s ability to defocus or focus harder, modulating what one works on, multitasking, focusing deeply or just kinda scattering oneself when there’s nothing important to do doesn’t work so hotly. Sometimes doesn’t work at all. I don’t have the most severe of ADD I’ve seen but I also have it pretty damn bad.

The IBS on the other hand is a stress and food trigger based spasming of the intestines. It can cause intense, mind breaking pain, sudden and violent bouts of sickness (the unpleasant kind where you do an evil kind of number 2 that burns like napalm) and sometimes follows no rhyme or reason in terms of food triggers because of the stress component. There’s no treatment that I know of. It constantly drags me down, affecting my diet, my eating habits and how I function with the pain. Having a reaction (what I call my IBS attacks) shuts me down. The pain is often severe enough that I start to become incoherent at times, it certainly fogs my thoughts when in a reaction.

Fun of intersections comes up especially with the IBS because when it hits I generally have to find a bathroom quickly to stop the pain. You all remember that I’m a trans woman right? Bathrooms are a deadly game of Russian Roulette for me and for that reason they terrify me. IBS gives me no choice though, no matter what the risk. I either get to a bathroom or the pain puts me out of commission completely.

I’ve faced a lot of static because of these things. People give me problems about what I can eat and my diet restrictions due to the IBS, as though it’s their job to advise me on how to deal with that. People love to tell me how similar their inability to focus on work sometimes is exactly like my ADD. People really seem to enjoy telling me that I’m just “lazy”, “ditzy”, “unmotivated”, or that I’m not thinking positive enough or have the will to focus on things or break out of the hyperfocusing. People really seem to like to say, “hey I get sick from food sometimes too” or “sometimes stress makes me feel ill too”.

My dad, whom you’re all already aware is a giant transphobic douchebag, was the worst with the ADD. He’s fine about IBS (he actually has it himself), although for some godawful reason he thinks my IBS made me trans through the pain. >.< Goddamn wire chewer. But the ADD he’s the worst about. I got the most accusations of laziness and unmotivated from him. I got the sarcasm when I finished things when I pulled off focusing. He probably didn’t believe that it was even real until the change caused by the medication. And then when I got off it he constantly pushed it on me. He also did this to my mom, who has the same disorder. Because, you see, to so many the way my mind works is “broken”, “disordered”, “wrong” and needs to be “solved” and “cured”. To so many I’m broken and incapable of living life. To so many I’m a tragic figure and not even because I’m trans but because I live in pain a lot of the time and have to put a whole lot more effort into the basics for focusing and disengaging. These attitudes are part of a world of bigotry that is largely invisible and largely accepted among society even in progressive spaces like feminism, much like transphobia is. This might all sound familiar.

This is ableism.

And it’s about time that I admit that I have disabilities. That I’m PWD (a person with disabilities). And let me tell you, writing this post is abjectly terrifying. I’ve been in this sort of state of nail biting fear pretty much ever since this site came into being and made me think about some really scary questions about myself and the things I live with. I thought to myself, disability isn’t what I have, I don’t have it nearly as bad as Person A, B, C, D or E with Aspect G, H, I or J. I told myself, “I’m just being whiny, I’m searching for attention.”

I made up excuses, “the ADD isn’t disabling enough to really adopt that title”, “I’ve never heard of anyone referring to IBS as a disability, so it’s probably not, right?”, “I’m taking away time and attention and resources from people who need it far more than me”.

Finally I cut through the bullcrap and got to the reality of why I didn’t want this title. I was scared. Terrified. Shaking. Intersections are scary because their effects are exponential. Are you a woman? You face a given set of awful shit by simple virtue of being a woman. Are you a trans person? You face a given set of awful shit by simple virtue of being trans. Are you both? You face far more than just the summation of those things. The transphobia and misogyny (combined we call it transmisogyny) swirl together and create a breeding ground for a hatred so vile and vitriolic that even fully avowed feminists of the highest caliber will start to spout truly sexist and vile misogynistic shit at you as though they were a Tucker Max mind clone. Mix race in there? Super fucked. Mix poverty in? Holy fuck you’re done. Being queer? Even worse. Intersections of kyriarchy do not have mercy on anyone and admitting that I’m not only a lower class queer trans woman facing the things white poor and gay trans women face but a all that with disabilities? Truly frightening.

A friend of mine summarized the attitude I had best: “Maybe if I ignore it, it’ll go away and I’ll be safe?”

But that’s wrong. It was the wrong attitude in relation to me being trans and a woman. It was the wrong attitude about my lack of financial solvency and my lack of money. It was the wrong attitude about being queer. Ignoring it didn’t make me safe. I was exploited during my denial/exploration phase. I was raped and abused by a exploiter of trans folk when I continued to deny that being trans and a woman put me at risk. I still was close to eviction and not being able to eat despite denying that I was poor.

Well, my disabilities and the horrid ableism of the people around me still affects me, even when in denial. I’m not safe. I never was. And it won’t go away. My ADD is a part of me. My IBS is a part of me. My pain and difficulties are a part of this beautiful woman just as much as my womanhood, fought so hard for, my transsexuality and my sexuality are all a part of me. And ableism’s harm done to me won’t just disappear because I put my fingers in my ears and go “LA LA LA I’M NOT PWD.”

But what I was denying myself through my own denial was a community. A group of people, with resources, support, similar experiences. All who get it, at least to some degree. People I can go to. People I can have solidarity with. The same thing I got when I finally admitted, “yeah, I guess I am trans and a woman…”. The same thing I got when I finally admitted, “Yeah, I guess I am queer.” My friends in the PWD community waited patiently, knowing how hard it is to get past that fear. Having all gone through it themselves, they didn’t push. Just waited. The PWD community is waiting. It’s about time I got up, dusted myself off, raised the flags.

I’m not just trans, a woman, lower class or queer. I’m all of those things and a person with disabilities. And I’m ready to accept that now. I’m PWD and no one, especially not myself, will silence me on that again.



21 Responses to “No More Denial: Disability And Me”

  1. There is an enormous about of empowerment that comes from – there are no really great words so here goes nothing – acceptance, owning, facing being a PWD. My own disability is not nearly as life-altering as yours; I am hearing impaired. But I hear “well enough” without hearing aids so I don’t wear them a lot. Despite being diagnosed with the hearing loss when I was 6, I was never given any tools for how to deal with it. I finally learned language and tools for empowering myself as a PWD when I was in college. I am much stronger in how I face the world with my needs now. I believe you will find that you will have a similar empowerment.

    I would imagine you have done all sorts of internet searching for resources and tools around IBS, and I know you have done so on trans issues. Nothing like having multiple layers of BS to fight from the world around you, eh?

    One piece that I can offer to you, something that is not clear from your post if you have sought (or even want to seek), is related to working life and chronic illness. There are resources out there. I will not presume to know if you want them or not. If you do, let me know and I will share what I can.

  2. 2 Licorice Lain

    RP, you know by now that I, too, have ADD-although only my friend, John, in my assortment of misfit friends and colleagues has ADHD-and have experienced the difficulty of trying to focus while lacking the capacity. On most days, I find myself spending from the time I awaken(6/6:15 on Monday and Wednesday and 7:30/7:45 on the rest of the days of the week) until late afternoon trying to assemble my thoughts into crystal clarity so as to develop some of ability to communicate and write effectively-one of the reasons why I am such an elitist when comes to free speech and the written word.

    Besides minor panic attacks that affect my naughty area, I have never experienced IBS and so can only sympathize withe pain you must fight through. However, I must say that you should not fear public bathrooms for the reason you have noted. You have shared with me that you identify as a woman and you have stated on your blog that you receive odd comments when you unveil your transexuality, thereby implying that you are a beautiful woman and no one would guess as to your original physical gender had you said nothing about this. With this in mind, I believe that you could enter the ladies room without encountering difficulty. The only logical reason for anyone to fear bathrooms would be the inherent unsanitary nature of those places.

    As for your abuse at the hands of others, the best thing to do is to make yourself emotionally available and not emotionally vulnerable. Be the kind of person who loves easy, but is not manipulated easily. It is difficult to reach that balance and maintain it, but emotional strength is rewarded with working relationships that go beyond the nominal desires and needs of the general person.

    I would say more, but mobile constricts the amount I can post.

  3. 3 Katie Mulligan

    I am deeply moved by the power and beauty of your post. My sons are both PWD. It has been difficult to reach out to community for so many reasons, and I’m grateful to hear we are not alone. Thank you.

  4. I was the same way for a long time with my Asperger’s/autism. “It’s not a disability”, “lots of people have it worse”, etc. Took me a long time to realize the ableism in my attitude (“I’m not one of those people!”)

    Yes, I don’t have as many problems as some, but to deny that it’s a disability is just self-defeating and ableist. I am a trans woman PWD

  5. Word.

    I am living my life to the best way I can right now. I used to use ADHD as a sort of battle, that there are days that the ADHD won. I was externalizing it, othering it and not seeing it as much a part of me as anything else.

    IT started hitting a few years ago, where I let a coworker know that I have ADHD and she responded “but you seem so normal!” and my brain spun into, “but its who I am” and well, as you know, denying made me feel safe.

    That website is amazing. In the short time it’s been up, I can own my ADHD. I haven’t gotten it perfect yet, but it’s mine, and my neurodiversity is my own.

  6. thank you for this post. glad to have you in community. xo

  7. You realize that you helped me intensely just on your own? Our discussions really gave me a lot of courage.

  8. Kudos for you for being able to declare something that is at once so meaningful and so difficult. Keep fighting the good fight and don’t let the assholes get you down.

  9. Hey, welcome. :)

  10. 10 GallingGalla

    thank you for this. i have been struggling with this issue myself, and have yet to fully acknowledge the role that disabilities play in my life, or to fully identify as a PWD and seek out resources. one thing that scares me is will i encounter transmisogyny and homophobia once again? will i be considered “disabled enough” because my disabilities are hidden? i have read accounts of PWD who use wheelchairs deriding people with hidden disabilities as “wannabes”.

    i am a queer trans woman, non-passing, white, middle-class but unemployed for a year and losing everything, including my home. i have aspergers, chronic regional pain syndrome affecting three limbs, numerous joint injuries, and carpal tunnel syndrome. the intersection between my being trans, my being non-passing, and my aspergers has resulted in my becoming more or less unemployable. interviewers view me as a “cross-dressing” freak rather than as a woman, and my aspergers prevents me from doing the kind of “knock-em-dead” song-and-dance that they demand. interviews ought to be simple: here are my skills, do they match your needs, but instead they are 95% politics that i cannot and will not play, thanks to the aspergers.

    Licorice Lain, if i were you, i’d be careful about presuming that a trans woman’s experience in public bathrooms will be just fine. The fears that we all have are legitimate and you would do well to listen to our experiences rather than try to poo-poo the issue away.

    i do not pass; it is unsafe for me to use either the women’s (“cross-dressing man invading the women’s bathroom!!) or the men’s (“you a faggot or a dyke? can’t tell!”) bathrooms. I don’t have IBS, but travel is a terror for me, every visit to the bathroom fraught with fear, and i have had some pretty serious harassment.

  11. And let me tell you, writing this post is abjectly terrifying. I’ve been in this sort of state of nail biting fear pretty much ever since this site came into being and made me think about some really scary questions about myself and the things I live with. I thought to myself, disability isn’t what I have, I don’t have it nearly as bad as Person A, B, C, D or E with Aspect G, H, I or J. I told myself, “I’m just being whiny, I’m searching for attention.”

    This, particularly the last bit.

  12. Welcome to the PWD community.

    (“relax, we understand you”)

    I’m a little giddy. Since receiving a diagnosis of Asperger Syndrome about seven years ago, I’ve been wondering whether I should keep the ADD diagnosis. However, I haven’t really talked about it with other ADD and Autistics, not being sure what was ADD and what was autism.

    Your whole description of ADD; yeah, it fits. It fits where others’ descriptions of just autism don’t, so you’ve convinced me to keep the diagnosis. Some days are a fog of scattered attention and inability to concentrate, other days are a sharp rush of hyperfocus.
    Some days the ADD and autism work together to either be a help or a disability, other days they work against each other, again as either a help or disability.

    I’m still coming to terms of thinking of ADD and autism as a disability, after years of being stubborn and pushing forward with as little supports and accommodations as I could. I had/have my pride and the half-belief that I really wasn’t “disabled”, that I was just “lazy” and just needed to work harder.

    But know what? When you find the accommodations and supports that work for you, they work. It’s tough, to find them, to get them in place, to keep them in place. It’s twice as much work, as an adult, because I have to be responsible for reporting changes, to report on how things are working, to make arrangements. Which is tough when you don’t really have executive functioning.

    But yeah.

    Welcome to the community.

  13. 13 nuri

    I know. But listening to myself! You know how hard that can be.

  14. Ah, ADD. Love it! Not. I don’t even know if I have it, and I don’t know whether I should more aggressively pursue testing/diagnosis because it sounds a lot like what’s going on in my brain, or whether I’m just looking for medical excuses for ridiculous laziness and malingering.

    *hugs* It’s tough to stand up and say “This is me,” no matter how many times one has had to do it.

  15. Much love to you, for the bravery and whatnots. :)

    On ADD – It should have been a clue for me when 12 years ago I bought a copy of “organization for idiots” and then lost it, soon after forgot I bought it and lost it, and while browsing in a book store bought another copy cuz I thought “this’ll help me”. 3 years later I found the first copy.

  16. Great post. I am still working on the “Is alcoholism/addiction a disability?” post, but thinking about posting it elsewhere. In many ways, don’t feel safe posting it on my blog.

    And PS: “stupid” (applied to people rather than dumb situations or things) is an ableist word, and I would greatly appreciate it if you would not use that to describe me on other blogs, okay? Admittedly (clearly), I still have considerable problems in thinking rationally, but I am trying to work on those. Okay? (I did a great deal of damage to myself in a very short period of time.)

    If you disagree with me, calling me “stubborn” or whatever, is far better than “stupid”… I don’t think you’d enjoy it, if after you wrote this post and was honest about your issues, I called you “stupid”…

  17. Ah, I wasn’t aware that it was an ableist word. I’ll have to find a different one.

    Obstinately, offensively stubborn would be a better description for how you were acting, especially since you made one of the most erasing, bigoted and offensive statements you’ve ever made regarding pagan Irish (like myself) by claiming Irish are a Christian ethnicity. It’s part of why I dropped out of the conversation. Because I was running close to the point where I was starting to reconsider whether I want any solid connection to you anymore.

    But moving beyond that little bit of unpleasantness, I actually do think alcoholism and addiction are disabilities. It would be worth it to explore, wouldn’t it? Or is the feeling of a lack of safety for posting it on your blog cuz the trolls will drop on it like a swarm of locusts?

    You really do get a ridiculous number of trolls. It’s like they specifically target folk from the south or something. I wouldn’t put it past them.

  18. You misunderstood me, or maybe I don’t know how to phrase it. “Irish Catholics” are the ethnicity.

    “Irish pagans” would be another one, although like that geometry thing with Set A and Set B, would be a lot of crossover (like “southern Baptists” can refer to both black and white Baptists; they sing many of the same hymns, believe mostly the same doctrine and share much culture). Like Haitian Catholicism is syncretist pagan also, there is major crossover.

    Anyway, that is what I meant. I don’t know how to phrase these things.

    Yes, it’s been Trolls-R-Us at my blog recently. I have gotten very Draconian about it, fed fucking up.

  19. Yeah you definitely didn’t explain that. I got fairly upset but tried my best not to spout vitriol all over your blog.

    I really just don’t know why they go after you so much. You’ve got good policies (ban and drop asap, don’t play their game). But they just keep on trying over and over.

    I really think it has something to do with you being from the South. Maybe they want that stronghold to stay a stronghold, knock down any attempts to radio for backup from other liberal zones? Trolling has definitely been used for coordinated strikes before.

  20. Like some of the other commenters here I was diagnosed with ADHD before I was diagnosed with Aspergers. I’m also a trans woman. Like Genderbitch, I’ve just recently come to terms with my disabilities as well.

    It started out when I was little and I was diagnosed with ADHD because I was having trouble in school, mostly because I couldn’t feel a part of the classroom due to my inability to really act socially with the other children. Anyway, I was forcibly medicated to make me normal, even to the extent where the pedo went well over the recommended maximum dosage for my stimulant medications (which I believe is what lead to my joint problems which caused my spine to go all wonky, totally off topic here).

    Later on in my schooling I was diagnosed with Asperger’s Syndrome after my mother, always trying to figure out what she thought was wrong with me, brought it to the attention of my doctors who agreed with her.

    Things went okay, Aspergers was presented to me in a way that was very positive. I was told how I was able to do things that other children simply couldn’t (I could!) and how it made me different (I was!) but not inferior even though I had trouble socializing with my peers (I didn’t care!). I was placed in special education to help me socialize.

    During this time, of course, I’m having feelings of being a girl. I’m having great difficulty seeing myself as a boy and I’m completely unable to *feel* like a boy. I blamed it on my Aspergers.

    When I started getting older I started having trouble with the Aspergers label. Firstly, I was abused by a special education teacher who thought that she could “cure” me by making me feel bad about being Aspergers. I started to grow up and actually care about my peers. I started to develop the capacity to analyse culture and people which helped me function even though I’ve always been a little eccentric. I came out as trans and my Aspergers was used as “proof” that I was male. I became a psychology major, a major that you normally don’t want to be “socially impaired” in.

    I DID NOT WANT to be Aspergers. So I chose not to believe it.

    When I was a little bit into college, though, I started to change my mind a little bit. Two things happened: first, a friend of mine lost her hearing and the way she accepted, grew, and became stronger really inspired me. Secondly, what used to be quirky twitches and noises I’d make once in a while started becoming more, and more, and more severe until I was compulsively barking and hissing in the middle of lectures.

    I got diagnosed with Tourette’s Syndrome and I came to the realization that I was, in fact, disabled. I, Sam, was disabled! And I found the identification that I’m disabled empowering: I wasn’t “broken” or in need of “fixing,” I wasn’t “inferior” or “wrong,” I was just disabled, just different.

    This gave me a whole new perspective on my Aspergers. I stopped seeing it in all the ways that it made me inferior. I stopped seeing it for all the ways it made my life more difficult. Most importantly, I stopped caring about those things. I started focusing on how the challenge made me a stronger person, how I’m better because of it, and how I cope with a disability anyway.

    So yes, owning disability rules!

    Also, Aspergers is probably to blame for me writing huge, post length spiels in comment sections… I’ll justify it by cross-post it to my public journal.

  21. Don’t feel bad about that. Long post length spiel comments are something I have to physically restrain myself from doing too. XD


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