more than anything else, my social anxiety sets me apart. more than anything else it blocks me. it is so insidious because it affects access at every level – it affects access to accessible spaces. it means even though i have accommodations for school, i am usually scared to use them. i am scared to leave the apartment. i am scared to use social networks. i am so careful of ever bothering anybody that i write myself out of my life. i feel like i live in a box with no in, no out.
it makes me overly dependent on the few safe people. it blocks participatory access to basically everything. it seems like a cruel joke that i’m so crazy about languages, because i can never overcome the anxiety enough to become fluent in another language.
it’s easy to hate and rage against the anxiety. and given that my treatment has been in the frame of the medical model (even defining it as “treatment” speaks to that), i think to some extent that’s been supported. agreeing on the enemy, if not the way to handle it.
i’m really interested in how things like social anxiety and what we call “nonfunctionality” for lack of a better word fit into the disability rights movement. i have gained so much more hope from the movement and the social model of disability. it actually really helps to think that i will probably never be “normal”, that i’ll always experience access limitations because of it. the social model (for a poor quick paraphrase) says that the disability lies in society’s failure to treat everyone equally, to provide equal access to public and private spheres. i love what a powerful example of reframing that is for me. i feel fired up when i see my “weakness” in a political light. it allows me anger, something that has always been in short supply. it helps me to feel connected. (for example, i always want to smile in some vague collegiality when i see someone in a wheelchair now, whereas before so much reading my concern was always to make sure i wasn’t in the way or being offensive.)
i want to know how i can participate and advocate for myself when i have a panic attack every time i am noticed. i want to know how i can contribute to the movement when i do not have consistency or many spoons. the thing i hate about my social anxiety is that i don’t have any kind of decreased need for social connection. i just find the connection to generally be painful. so when i read these blogs and look at other things online relating to the disability rights movement, i have a longing to somehow enter into that sphere. i have become increasingly attentive as a passive participant – but there’s something, too, about dialogue. edges and indigo are really good for talking about issues with, but we’re just three people, none of whom has much energy ever. it’s different from communicating with bloggers by commenting or something. but i get a panic attack every time i comment anywhere – i think i’ve done it twice, and once sent a few tweets to a blogger i admire. each time has cost me incredible amounts of energy.
is it fundamentally contradictory to think about accessibility when the disability involves the need to be invisible? i don’t think it should be. i long for community, but it does feel out of reach for me. one of the problems is that i’m not ever going to be able to be consistent. i can’t build up a blog that people will come to and engage with because i can’t write about social issues very often. so much of the time, i can only write about the pain i’m in that day. so much of the time, i can’t write at all.
i can’t build up a persona, because i have been able to say something three or four times in a year. when it’s that rare, each interaction is taken individually and will never be connected to anything else, or remembered. and when each interaction is taken individually, the energy cost remains very very high. if i had some kind of continuity i could know that x blog tends to be receptive to me or that i would even have some tiny amount of credibility there, even when i have brain fog or anxiety that shuts down cognitive functioning.
i want community even more now that it looks like i might have physical issues too. i have severe chronic debilitating headaches and it looks as though i fit so many symptoms of fibromyalgia. (not saying those two are necessarily unrelated, but i tend to split body pain/head pain in myself. like somehow head pain is easier to concede, but less significant; body pain might mean something, but is more debatable.) more and more i turn to a world aligned with “disability” because it just gets more relevant each year.
i don’t know what accessibility would look like for me. i know or feel that i don’t have it, in some of the ways i mentioned. but it feels impossible, maybe oxymoronic, to think of finding a way to participate in community while remaining invisible enough to not trigger my anxiety. i do not see a way to get over feeling inferior (my words would waste everyone’s time), or to work with it.
