Question Time: Community

Question Time is a series in which we open up the floor to you, commenters. We invite you to share as you feel comfortable.

How important is being in community with other disabled people to you? Where do you find community with other disabled people? How do these communities fit in with other ones in your life?

12 thoughts on “Question Time: Community

  1. It’s important to me to have other people who are like me accessible to me socially, whether that is online or in person, and I actually think that most people would say the same, whether they are disabled or not. I need the touchstone of knowing that I am A) not alone and B) normal, for a certain value of normal.

    It’s not, however, the axis around which most of my social activity rotates.

    The most “community” I have experienced is online, where discussion of disability/mental illness makes up a larger proportion of my interactions. It was not my intent to seek out these people, but like calls to like, and so we have found each other, and I enjoy the casual companionship of that, of knowing that my readers generally come from a place of understanding, and knowing that occasionally I say something that they find meaningful or helpful. We help one another.

    I’m very accessible and open online, so the different communities I am part of all pretty much interact; I access most of them through the same hub (Livejournal). There’s quite a bit of overlap with real-life people, too, since most of my friends and acquaintances know where to find me online, and I have found this to be a largely positive experience.

    I don’t know how I would feel seeking out groups of people like me in person. I mean, I don’t enjoy interacting with people in real life that much, I don’t like most people all that well, and sharing even what is a very significant thing doesn’t really change that. Online, there’s a wider pool; it’s easier to interact only with people I do like.

    Despite people decrying the internet for how it makes us all socially lazy or whatever and unable to deal with the frustrations and so on of interacting with “real people,” I find this a tremendous help. I never had energy for the frustration in the first place, and before I got net access, which allows me to maintain real-life friendships with less face to face interaction, I basically had no real-life friends.

  2. I like having an online outlet where I can talk with people with my particular health issues without the response of “well, I had TWO migraines last year, I’m just like you!” or “well, isn’t it really BAD FOR YOU to not get your period, you are letting all that “bad blood’ pile up inside of you, we all get cramps, you know, just deal”.

    I have chronic migraines and adenomyosis/endometriosis. Without my pills, I am basically guaranteed only 4 days a month without pain. I like being able to talk about that with someone without them trying to one-up me or dismiss me totally.

  3. Online!

    I mean, I do gab with the girls (*gag*) who have to see Dr Ego, but that’s mostly Ego-whining and bashing. (He’s so Ego he only takes us “difficult” people.) Though some have shown me how lucky they are… I mean, I started seeing him a year into my pain, others… so much longer.

    But online it’s so much easier, even though I can’t find any group dedicated to JUST chronic pan and not fibro. I found one locally, but you have to register if you want to e-mail and go so…. what do you do? Plus it’s for “moms.” My mom was like, ooh ooh me, you’re such a pain. I found another great one, but when I clicked on the message board link to see random posts, the board host said “Why are you here? This is from the Bush years, it’s gone yaar.” But people keep searching, because there were recent posts on the guestbook.

    Invisible disabilities… it can get lonely.

    Which is why I love this place and all the blogs and ljs linked because You do that too?! (I did say that at one person’s LJ where she mentioned having to change meds/dosages because of tolerances.) It’s like thinking you’re the only Bollywood fan in the area, and well… the internet has been an enabler (sleep or X-files fanfic?) in my life, so why not help sometimes?

    Question for those who went to college or are still in college – was there ever a group for students with disabilities?* Because we don’t have one, and you can’t tell who has an invisible disability or is fighting with depression. (“Go away, I have homework to do! Okay, I’ll watch Jhoom Barabar Jhoom. But just this once! Ha ha, Abhi is silly.”) And while I do talk to the student who uses a wheelchair (about her hair, about “normal” stuff, we’ve never had a class together) I don’t feel comfortable asking her about… that.

    *See my angry yet polite (okay, maybe not POLITE, but no swearing) letter about using “crazy” in a negative way where I point out that queer students have a support group, but us crazies don’t. ex – “I know they’re my friends and all, but it does get annoying when I start crying for no reason and everyone asks if I’m okay.” “I know, I know.”

    Sometimes just validation is all you need, that you’re not the only one going through some messed up stuff, physically or emotionally. Though I think I’m pretty unique physically – I have the flu. I have no fever. I thought I was sweating horribly Tuesday because of the power of suggestion, but it was merely the fact that it was 80 F in my room. This morning? Freezing, but because the AC works and it’s 60 F! Whoops. I can’t even do the flu normally anymore!

    And this has been going on – mmm, *most* people don’t do this – since I was 13 and seeing Dr Endo every week because I reacted (negatively) to all the treat the symptom meds rather quickly. And then the skin at 15. The only thing that worked was the pain medication and the OTC cream. Barely. But Dr Derm tried for 3 months until he found the right thing.

    So while I won’t find my exact medical problems clone online, I can find one person who’s had horrible eczema, one who’s lost xer thyroid, one with chronic pain – undiagnosed or not. And plenty dealing with mood swings. And tons dealing with the internal battle “I don’t want to be an addict, but OH MY GOD I CAN’T BREATHE ow.”

    So… y’all have helped so much. I found this place in November, when I was at home because the pain had shot up worse than usual and well, I wasn’t alone online. Or at home, I had Mikey’s butt on my head. As usual.

  4. most of my friends in real life are also mentally ill. when i was hospitalized for a week in june, one of my few sane friends ended up operating as a kind of control center, so everybody called her to find out what was going on, including my parents. they thanked her profusely at one point for being such a good friend to me while i was dealing with mental illness, and she said, confused, “why wouldn’t i be? if i didn’t love crazy people, i wouldn’t have ANY friends.” it really helps to know that i can talk about things like medication and flashbacks and shrinks and whatever in real life.

  5. Finding a community for one of my disabilities has actually been very hard for me. I’ve been able to find one or two people offline who are both learning disabled and have the experience of growing up with the stigma or the label. Online I find it difficult because its feels as if many people who write online don’t have the extreme difficulty with getting words out in text as I do. I would love to be able to articulate more of my experiences but I feel stifled. Even commenting on things is exhausting for me because it takes a very long time.

    Finding a community for PCOS support has been very easy for me. When I feel like taking the TIME to engage.

  6. Community has been crucial in developing my identity and politics as a disabled person.

    When I was quite ill and couldn’t leave my house, a mailing list community organized around our common diagnosis was essential. I learned how to live with a body like mine, useful tests and treatments, and how to connect more deeply with like-minded individuals. One lesson was how powered mobility enabled me to do more with the energy saved from walking.

    Once I got that first wheelchair, I had “imposter syndrome” something fierce. I thought the routine crap dished out to disabled people with visible assistive technology was personal. I was also afraid that the real disabled people – full time wheelchair users – would treat me with disdain. But hanging out with those folks face-to-face was revelatory. It really didn’t matter what we couldn’t do; we cooperated to accomplish our goals by pooling our strengths.

    I was able to find this community locally through the network of Independent Living Center and through the direct-action group ADAPT.

    We worked on improving transportation services in our city, both the door-to-door “paratransit” and the big bus “fixed route.” It was so exciting to be part of a diverse group, where our capacities as disabled people really mattered.

    It brought me face to face with the legacy of a separate and unequal education system: smart, thoughtful, eloquent people who couldn’t read or write because the school system assumed they weren’t “worth the trouble.” I learned that passion and dedication to community organizing are not measured by IQ scores. I was working with people who understood what a meltdown was. Amazingly, they didn’t think less of me for melting down from time to time, and once or twice even saw it coming and made a safe space for me to be quiet in.

    The seeds of community activism are there wherever you are. When the time is right for you, I hope they flourish.

  7. I don’t feel like I have much of a community to call home, except for online. Online, there’s a couple of pelvic pain communities, and they’re usually locked or semi-locked up so you can talk about whatever openly and not have to worry about getting judged. Someone else has been through whatever you describe, or if they haven’t they don’t deny that what you’re going through is real. And sometimes we can offer each other suggestions for treatment or say “This happened to me, that didn’t happen, etc. etc” and so that’s useful feedback.

    Say that there was no support communities in person or online.
    Well if there wasn’t any support communities online or in person, I’d be totally lost. I really valued that feedback I got from talking to other people like me. It helped me make decisions but of course I got feedback from other sources too (doctors, articles, etc.) I’d feel like I’m the only one like this and no one will ever love me etc.

    But it turns out, I’m not so alone after all.

    I don’t feel like I can talk to them about feminism much though.

    There’s like one or two support groups in my state for face-to-face interactions but they’re too far & impractical for me to get to.

    So so far I’ve only ever met one other person in person who admitted to having vulvodynia. I have a feeling that I’ve met other people who do though, and we just, we don’t talk about it. You’re not supposed to talk about that place.

  8. K – “Say that there was no support communities in person or online.”

    My depression would be worse, but saying there are no groups online implies there is no “online,” so I wouldn’t have any outlet, and blogging about my pain is not the same as writing in a diary (which I tried a million times before the illnesses became so big in my life… like a week after September 11th, I was like, hey I should write something for posterity that was important)… because there’s a potential audience, even years down the road, a teenage girl may see that and go, wow, she’s weird, but I’M NOT ALONE.

    But even before FWD, I still poured my health issues out in various message boards… we are/were friends, why shouldn’t they know? And I get virtual hugs and some advice and just the knowledge that people care.

  9. Hi there 🙂 First time commenter, somewhat new reader.

    When I was a kid, belonging to a disabled community of any kind wasn’t much of a concern of mine. I mean, I had a few friends with varying disabilities, but I was so preoccupied with proving to non-disabled people that I was “just like them” that it left me no time to really think about my disability outside of showing the world that I didn’t let it slow me down (I had that overcoming adversity stuff down pat!). But as I started and finished college, matured, and moved into adulthood, I started to think more about so-called identity politics, progressiveness, tolerance, inclusion, my place in society, and everything that those things encompass.

    Being a working class, black, disabled woman, finding a community where I feel I can comfortably talk about the intersectionality of marginalization that is my everyday existence has become very important to me, but I haven’t found a satisfactory place just yet, online or otherwise. I was a member of a few disability student groups in college, but the fact that my disability is pretty uncommon made me feel separate, even from the very people I was supposed to be of a piece with. Fortunately I was able to forge a few friendships with some of the people from those groups, but now that I’ve up and moved across the country for grad school I’m starting from scratch on the IRL friends with disabilities front AGAIN.

    My first foray into online communities was Jezebel, and that was fun and great for a while – until I realized that neither the commenters nor posters were very sensitive to body image issues, racial issues, or issues facing the disability community. Same with Feministe, Feministing, Pandagon, etc. I was disappointed, but now that I follow numerous PWDs on Twitter and read What Tami Said, Womanist Musings, and this blog on a regular basis I feel like I just might have found the spaces that offer the camaraderie, advice, and discussions I’ve been looking for.

  10. Personally, being in a community hasn’t been hugely important to me. Perhaps because my Mum and I both have chronic pain (although to different extents) and that allows us to commerisate/rant together. Also, I have yet to meet someone else with the same nerve “issues” as me, and trying to take part in neuropathy groups just makes me frustrated. I find most of the chronic illness/disability forums I’ve been on just send my mood nosediving and now avoid them. (The fact that I really, really can’t stand the layout of forums doesn’t help either.)

    That being said, the mere presence of some of these communities has been a bit of a help, simply for the fact that knowing I’m not alone in the difficutlies I face.

    FWD is the first site where I’ve felt comfortable reading, and taking part in. I’m not sure how much of that is the fact other issues are discussed or that I’m finally coming out of the uni induced fog and can actually think about things now.

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