It’s Hard to Know What to Say

Sometimes I have a hard time thinking of anything to say here. In large part because it still feels, to me, that writing anything here is an act of such unimaginable daring that I should immediately take down everything I’ve already posted and get to work scrubbing cached files of any mention of my name.

I’ve noticed that it’s very difficult for me to talk about my actual experiences with disability here. The things I’ve felt, the things that posed obstacles. It’s a lot easier for me to talk about disability issues that could potentially apply to me, but which I’m not currently experiencing. The difficulties I would have were I forced to get care and treatment through government health programs in the US. The near total lack of options and assistance that would be available to me in places like Rwanda or Cambodia. But not the problems that I’m dealing with right now. Not the way stigma is affecting me this week.

Both of those kinds of writing are deeply rooted in my own experiences with disability. When I think about policy problems, I always imagine how I would be treated, how my symptoms and impairments would have prevented me from accessing the benefit in question. But when I talk about the policy, I can highlight those issues and problems (sometimes a person with depression can miss a scheduled appointment for disability-related reasons) without having to share the personal details behind it (the time I missed a class that was being held literally 20 feet away because I could not get out of bed during the midst of a major depressive episode).

I don’t trust the general discourse enough to feel safe putting my stories out there (specifically, the people who can Google, the commenters who don’t get through mod, the Tumblr reblogs). Enough of the world can still use these things as weapons that I do not want to give them any ammunition. This position is one I’ve come to through direct experience of people I’ve respected and trusted throwing things back in my face. And not just friends – I’ve had specific professional repercussions directly related to my disability status. Again, sharing more details about that would make it a more relevant and compelling story, but it would also exponentially increase my potential vulnerability to increased or future problems of the same nature.

So why is it my responsibility, as the already vulnerable person, as the PWD, to expose myself further, to hand people the tools they will then use to attack me? Is the value that PWDs add to discourse solely in sharing the intimate details of their hopes and fears, their catastrophes and failures? Is discussion based on but not including personal details inherently less powerful?

I feel like I’ve taken a major step identifying as a PWD. I am unwilling to empty myself in front of people in order to convince them to care.

11 thoughts on “It’s Hard to Know What to Say

  1. This must have been a difficult post to write. Thank you for doing so.

    I agree that it’s sometimes difficult to bring things back to the immediately personal–and in the case of disability, often even harder–because of the reasons you mention, because once that information’s out there, it’s out there, and it is all too often used against us.

  2. All of you writers here do such a good job of making this a safe space for those of us wwho read it, I sometimes forget that the only reason it does feel safe is because you deal with the nastiness.

    Thank you so much for that.

    I still struggle every time I “out” myself as somone with clinical depression. It has to be so much harder when you can not control who gets to learn these things about you, since you can not keep them from reading, even if you can protect us readers from having to deal with the reactions of those who just don’t get it.

    I am greatful for every post you and the others make. I think it is an honour to be allowed into your lives as far as you want to allow us in.

    I hate that people are so prone to disbelieving everything they don’t like that one sometimes feels forced to share intimate details to convince them.

    Yes, telling somebody that joking about disability is not ok, and you do not want to be talked about that way can maybe work- but people shouldn’t need a personal example right in front of them to believe other people’s stories have value and that their problems are real.

  3. I completely understand. I was recently a guest poster on Harpyness, about living with invisible illness. My first crack at the post was so impersonal as to be useless. The second, final, edition had some personal experiences, couched very broadly. I couldn’t bring myself to write in as much personal detail as other guest posters about other topics, because I already feel vulnerable just saying I am a PWD. Putting a lot of personal detail out there about how I *feel* about experiences, is just a little bit much.

  4. I absolutely understand this. I used to blog fairly openly about my struggles with depression and anxiety. And then, when I had to go on high risk insurance when my COBRA ran out, I became much more circumspect because of how the two private insurers to which I applied first used my disability against me.

    What is really sad is that now I don’t report all of my symptoms to either my psychiatrist or therapist, out of fear that their notes will be used against me again someday. What sucks is when abelist, psychophobic and just plain evil industries like the US insurance companies not only refuse to help, but insist upon making me sicker (for example, I went into a suicidal depression when they refused to insure me, because they essentially said I would end up in a hospital and was a suicide risk — even though I’ve never made an attempt!)

  5. Thanks for this post Abby Jean. I can see how it can be making yourself more vulnerable to stigma and attacks and all kinds of problems if you expose a lot of yourself on the Internet.

    I, for one, used to expose a lot of myself online, and most of it is still readily available on my blog (where I use my real name). Consequently, if I ever become an interesting target for online libel or defamation, or whatever kind of mistreatment can follow from someone’s openness online, it is rather easy to find ammunition. So far, I am not well-known enough in any subsets of the blogosphere I participate in, but I have been thinking about my responses should I ever face damaging consequences from my openness. I am also not as open as I used to be, but still fairly open. One bad thing about not being as open as I used to be, is that people will not belief I am actually having problems because I don’t write about them in a personal context. For example, if I write about the difficulties of the Dutch long-term care system, people don’t recognize how I face them personally and believe that I for this reason must be fine.

  6. There’s a balance that PWD have to find online, either leaning toward carefully maintained anonymity that allows the freedom to speak genuinely and in-depth about one’s personal, individual experiences — and a precarious pseudonymity, where you might be found out, where you feel you can effect change by working with your online writings and your offline working both together and integrated, but you have to depersonalize to be able to survive with your foot in both worlds.

    It’s not fair that we have to do that to be able to actively address the shit that makes our lives, and other people’s lives, hell.
    .-= amandaw┬┤s last blog ..Gender, health, and societal obligation =-.

  7. Thank your for writing this. I don’t blog, but I deal with similar problems in my daily life (especially because I ‘pass’ as neurotypical and heterosexual, and am not yet ready to be open about those things). So I try to call out discriminatory behavior/language when I can, but rarely do so in personal terms. Anyway, I just wanted to say thanks for this post and this blog. I don’t comment often, but I do read and am grateful for all of you who blog here for providing a safe and thoughtful space.

  8. Yes, abby jean, it is. And I’m tremendously grateful for this post–because I do want to speak up, and I do try to speak up, not just in the comments here or in my own blogging, but in my life. Every time I hear someone say “crazy” or “unbalanced” I want to cry. Don’t you realize I’m crazy? But I also feel like I shouldn’t need to out myself in order to avoid being insulted. (Especially when even the people I’m out to, and to whom I have specifically said, “It really bothers me when you use that language, and I would appreciate that you not use it in my presence,” don’t seem to care. The payoff doesn’t seem big enough.)

    And lauren brings up a really good point–that here, you have no control over to whom you are out, which is a hugely courageous thing. And pseudonymity is a struggle–I’ve told a few friends about my blog but I’m often wary that knowing that M. or C. is reading will influence me to be more circumspect, when it’s so important to be able to tell my story, to talk about these things.

    I also think the reasons for “emptying oneself,” as you put it, influence how it feels greatly. When I’m “emptying myself” or talking really vividly and descriptively about a panic attack, a day I couldn’t leave my room, a day I went into crisis, for myself, for the benefit of standing up and claiming/legitimizing my experience, and to let other people know they’re not alone* it’s a lot easier/more fulfilling/more cathartic than when I’m doing it as a means to an end. “I’m depressed, and this is my experience” feels empowering. “I’m depressed, so please stop saying ‘crazy’ because it dehumanizes me” feels much less so.

    *On that note, abby jean, I really appreciate the anecdote about missing class, because I missed a class for the first time yesterday morning because I could not drag myself out of bed for the world. I’m hovering around the year mark for what I consider to be the onset of this MDE (it’s so hard for me to tell, because by the time I can acknowledge that things are Not Right, they’ve been Not Right for 4-8 weeks) and I’ve missed classes for which I was the TA, but not in which I am actually enrolled. But it was bound to happen sometime, I suppose. It’s nice to know that not only am I not alone in this experience, but that someone I respect tremendously had a similar experience and lived to tell.

  9. If this were Tumblr I would heart this post. It is truly excellent, and the point you make is really resonating with me.

  10. Oh boy, yeah.

    My world fell apart last summer, and now I feel like I was too open about it, and wish I could take it back. It was one of those times where all the decisions and choices I could make were bad, so I had to pick the best out of bad options. I was surprised that the people who knew what decisions I had made were judging me, and I tried to explain the situation, but I guess to them it sounded like I was making excuses. Now I have a hard time saying anything, good or bad, about my personal life. I want to talk about it…and I don’t, if that make sense.

  11. This is so true. I’m lucky that I live in a place where (for now, at least) I’m covered for health care without having to pass any insurance company tests, and because of the nature of my work I have been reasonably honest with my employer.

    But just when I’ve been feeling more comfortable talking about things, and decided it was good to be open with my family and friends, my own sister throws it in my face, basically saying that I’m not reliable enough to handle certain aspects of my mother’s upcoming major birthday party, because “you never know when you’re going to get sick”. She tried to couch that in terms of “having stuff to do on a deadline might stress you out”, (when she knows my whole life has been lived on a deadline and I’ve managed so far) but it was a not-very-subtle dig.

    There are risks to coming out, even where you least expect them. (Although, really, I should have expected it from her.) My family was okay when all they knew about were the physical aspects of my condition, but now that they know more about the depression etc, I fear more of the same.

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