#Ableismexists, so we BADD again.

One of the more insidious things about ableism is that - unlike a lot of other prejudices - there's still an absurd amount of debate over whether it even exists or not.  For example: my spellcheck? Still underlining it.  A more widespread example would be a recent Twitter hashtag, #ableismexists, which wound up with a not-insignificant number of retweeters who were arguing that it actually did not - while this was in no way a surprise (but rather an unfortunately common response, in my experience), there was one new-to-me experience: At least one of the most prominent deniers was a woman with a disability herself.

The woman in question made a YouTube video where she - while using ableist terms like 'retarded' and 'idiots' - not only insulted the originator of the hashtag's lived experience, but talked about how loving and feeling pride & claiming as part of his identity his disabled body was 'sick'. Obviously, I do not agree with her, but I also felt like her post (which got retweeted a LOT by non-disabled folks, trying to disprove that ableism was a thing in a  "See: a disabled person doesn't think it's real, so how are we supposed to take it seriously"way) raised a pretty interesting point - specifically, the idea that if you don't experience something, how can you then feel qualified enough to say that it doesn't exist?

This woman's story is her story - for her, ableism and internalized ableism were not just foreign concepts, but things she found actively oppressing: More than once she said (or intimated) that the closest thing to actual ableism was what 'social justice assholes' were creating by believing in ableism, that accepting disabilities and disabled bodies was an injustice - an ableist trope I myself have had to overcome (more than once, and in more than one way) - that 'accepting' our disabilities was as good as 'giving up', allowing us to 'feel sorry for the poor little cripple', accept a role as victim for the rest of our life.

If that's her experience of ableism, I can see why she'd fight so adamantly against acknowledging it.  My experiences accepting the fact that there are systemic, social, financial, legal, informal, educational, medical, (and a million other forms of) injustices against disabled people has helped me to step out of feeling like a victim, and into feeling like a member of a larger community - not just of people with disabilities who are fighting these injustices, but of any community I have ever been a part of.

I never felt more like someone who belonged on my college campus until a group of girls in my dorm helped me realize that some of the policies the school had in place were creating a completely unfair burden on me - a wheelchair user who, because she could sometimes walk a few steps, was forced to use the stairs during a fire drill and wound up incapacitated for months.  When it happened, I didn't feel as if I had any recourse, or as if it was the school's job to change its policy: It was only the insistence of the women in my dorm, who saw the result of the policy, who made me recognize that the policy itself could be unfair, that the school could be operating under its own prejudices of 'if you can a walk a few steps, you can take the stairs', and that that was an inequality that needed to be addressed.  I didn't feel more like a victim because someone explained to me that the rules were unjust; I felt LESS like one, because now I had something I could fight to change.  My ability to use the stairs was not going to change (no matter how much I may have wanted it to), so the policy needed to.

Figuring out that doctors aren't always without prejudice (particularly when it comes to treating chronic pain patients), has empowered me to step away from more than one doctor who was actively doing me harm. Witnessing that some so-called 'advocacy groups' work against the group they're supposedly advocating for has made me a more conscientious advocate myself, has taught me to listen to the people who are being spoken for, to give them the space to speak for themselves, wherever possible. Recognizing ableism in larger society, and in my life, has allowed me to (among many other things) set more realistic goals for myself, commiserate with and fight for other oppressed groups, speak up on my own/other disabled people's behalves, step out of the mentality that - although my disability isn't something I would have chosen - it isn't something I can live well with.

For me, accepting my disability has been a long and complicated process - I still sometimes struggle with the realization that a lot of things are not going to happen for me, because of my health, and that that's ok.  I still sometimes struggle not to push myself too hard, because it always ends up with dire health consequences when I do. I still sometimes have an issue with feeling like I'm not doing enough to be considered helpful, that I have to miss out on too many 'normal' days with my friends and family for me to be worth them sticking around for. That I still have value even if I am contributing nothing financially. All of those issues (and so many more) are things that I accept are internalized ableism - thought processes that have decided my value as a human being is lessened by my chronic illnesses and disabilities. Accepting that the way I feel sometimes has more to do with a screwed up value system (capitalist societal norms of value being connected to financial contribution, for example) is 100% more empowering to me than thinking that I am worthless because of something I cannot control.

I'm not discounting that woman's life or experiences - if she feels like ableism is a detriment to her personally, and to disabled people on a larger scale, that's her right, and it's her right to say so when the issue is addressed (which is why I'm not linking to her video: I'm not trying to start hate anywhere). But I think to ignore and dismiss and discount the people the tag - and those of you who participate in BADD every year, and millions of more disabled people - is equally unfair. 

Just because it is not your experience, doesn't mean it's not valid. 

To read about some more perspectives on (Dis)Ableism, head on over to the Goldfish's abode: BADD 2016.  

Venturing out (or, why I don't go places)

So last night, I did something I've been vowing to do a lot more of, but things - mostly being sick, or trying to accommodate other essential parts of my life - kept popping up and preventing me from doing: Leaving the house to do actual grown-up things.

Now, some of you may want to quibble over the definition of 'adult' when I tell you that the thing I attempted to attend last night was a book signing by one of my new favorite authors, Rainbow Rowell and David Levithan, whose work I have also really enjoyed - and who both happen to write YA fiction - as well as and two other authors whose work I had not had too much experience with before last night, but whose readings last night definitely made me curious enough to put them in my TBR heap.  (Paul Rudnick & Bill Konigsberg), but those quibblers would be wrong.  All books for all people, that's my motto.

Anyways, in order to go to the signing, I did what good chronic babes do - plan ahead, figure it out, try to make it work. I spent the day in bed, recuperating from a rather long Sunday of crafts with the family, and gathering my spoons for what I expected to be a couple hours of an outing (at night, in the cold, which aren't my regular things, so therefore take extra spoons.) Which, I was totally fine with doing - that's this American's life, anyways - chronic illness = chronic spoon hoarding.   I got up early to take a shower, so that I could have a nice long shower coma during the afternoon, and then spend some time getting ready to go out, and then hit the signing. And I rationed my meds & my meals appropriately, so that I'd hit the peak of pain management right around the time of the reading, be able to pop the next dose probably while waiting in line to be signed, etc. etc. - In short, all of the bits and pieces that go into everyday chronic living that people without chronic illnesses don't take into consideration, and usually I don't mention - They're just the cost of living in this body.

But the reason I remind you of that cost is just to show you you that that's where my evening started.  That's the blank slate of my night, if you will: A lot of effort went into getting there, and then it went down hill from there, but I just needed to remind you (and myself) that it took a lot to get there in the first place. 

 I'll also tell you what else is the cost of living in this body, and that is showing up at a book signing - that you have spent nearly a month anticipating, because people you like have been telling you how great this author is and how awesome her books are, and then you read the book and they are right, and she is awesome, and now you Must Meet Her -  a half hour early - to get a good seat, even though I've got my own chair, I like to make sure I'm not in an aisle or blocking people's way or sticking out like a sore thumb or anything - only to find out that the signing - which has been highly publicized by the bookstore through its tweets and tumbls - is down a flight of stairs. 

Now, ordinarily, I have reconned any new experiences quite thoroughly, so that this sort of disappointment is not a common thing anymore: A few years of showing up to places that you can't get into is both demoralizing and informative - you learn pretty quickly to call ahead and triple check.  But the thing about this bookstore is that I've been there before.  More than once.  And while I knew they had a downstairs, used books section, it did not occur to me that the signing would be there, because I had been to a previous signing - much smaller: I admit now that I should have recognized and realized this - that had been held upstairs.  So I was super excited that this little independent bookstore - one of my personal favorites - was having one of my new favorite authors to a signing, and the logistical part of my brain skipped right over the "well, where are they going to put the people for this signing if there are four authors?" part of the equation.

Still - a flight of stairs is an insurmountable obstacle for me, BUT, I was quickly assured by the booksellers that the event would be broadcast over the speakers to the upstairs, so I would be able to hear everything, and that my book would get signed, and that they would have the authors come up to meet me at the end.  So, after some mental realignment, I paid for my new copy of Eleanor and Park (I've only read Fangirl, which I love, love, loved,) and asked the clerk that I'd brought my own copy of will grayson, will grayson to be signed (and was assured that it would be fine), and I set about to listen to the readings and browse the bookstore.

Which - while not optimal, what with the phones ringing and the people upstairs not understanding that when an author is reading you should be quiet - mostly worked out OK.  A few twinges here and there when the crowd upstairs was too loud, or a question downstairs was too quiet, or the crowd downstairs laughed collectively and my gut gave a little pull at being - once again - on the outside.  Everybody down there was fangirling for Fangirl, watching as the authors read a scene aloud, and I was up here, trying to balance books on my lap and stop people from bumping into me while I parked my chair under the nearest speaker in what I hoped to be an unobtrusive corner.

But it got so much worse once the readings ended, and the signing began.  Because then the speakers shut off, and I was cut off from whatever was, collectively, happening downstairs.  Except for the random bursts of laughter, or the intermittent groups of people exiting, all chittery and excited. And I know that the reality of it is that a large group of mostly teenagers and college-aged kids were crammed into a basement room, hot and sweaty in their overcoats, even though it was freezing outside, just because there were so many of them and the line was so long. The reality of it was that the authors tried to talk with everyone and joke and smile and shake hands, and sign and personalize, all while trying to rush things forward, to get to the next person in the never ending line.  I know that that's the reality of it.

And I tried to convince myself - or my mother, as she got more and more put out on my behalf as the hours passed - that I was lucky to be up here browsing through the bookstore while waiting, instead of stuffed downstairs with everybody else.  But I didn't buy it, and neither did she.  Because that's part of it.  That hot cramped, impatient wait in line is part of the experience, and I wasn't getting it.

It's a hard thing, it's a terrible thing, to have something that you want so close, and be unable to get to it. I mean, all that was keeping me from being a part of things was those stairs, and the longer I waited, the more I tried to convince myself that this was all fine with me, that being excluded didn't hit every soft spot I had, didn't make me feel stupid and unnecessary and make me question why I even bothered to leave the house in the first place.

And see - that's the thing that I can't explain to the lovely clerk at the store who kept telling me the line was moving and things were progressing - that it wasn't the wait that was bothering me, it was being left out.  It's the part I wasn't able to explain to the book signing lady who rushed up the stairs, all apologies and explainations of my book getting mixed in with the preorders - that after four hours of waiting, and the store closing down around me, and listening to people joke and laughter rumble up from the basement, I had to go, I had to leave or burst into tears right there. 

The clerk called down when I was the last one left upstairs (Well, me and my pissed-off mum), asking about my book, and I knew just by the tone of her voice while she talked to the person downstairs - that slightly annoyed, slightly embarrassed, slightly trapped 'I don't know what the hell do do with this lady in the wheelchair who's just up here wandering around waiting' tone - that I wasn't near as OK as I was pretending to be: Here I was, in a bookstore nearly all by myself, which is basically like a wish-come-true-territory for me, but after hours of pretending I was alright with being left out, suddenly, my stomach started roiling, and I could feel the tears gathering, that tightness in your chest that warns you you're probably going to cry.

So when the event lady came bustling up the steps a few minutes later and asked for my name again - and then flew back down the stairs to get the book signed - I just, felt frozen.  Felt forgotten and frozen and knew I was going to cry.  In defense, I picked up the book nearest to me, turned my back on the clerk and my mother (who had been getting more and more agitated and whose agitation was wearing on me) and just stared blankly at its pages.  I have no idea what book it was.  I turned pages blindly for the five minutes it took the event person to come tearing back up the stairs, signed book in hand, apologies on her tongue.  I think I thanked her, I know I tried to thank the clerk: I basically "ran" as fast as my wheels would take me so that I would be outside before I started crying.

I mean, it sounds ridiculous to me right now, typing it out, to say that "I didn't get to meet the authors I went there to meet, and so I burst into tears."  That's not it, although that was super disappointing  - Because Rainbow seems so lovely! and her name is Rainbow! And David was hilarious! and the other authors were so charming and self-effacing I knew they would be my kind of people too.  It wasn't just that, is what I mean.  It was being forgotten.  It was forgetting to double check, and thinking I was safe in a place because I've been before.  It was waiting for four hours - patiently and without fuss - and realizing at the end that I should have made a fuss, that I'd made a fool out of myself by waiting. 

See, on here?  On the web? I am totally confident (well, mostly confident) in my ability to stand up for what's right, disability and accommodation wise.  In person, I almost always feel like I'm asking for too much, or that asking for anything is being pushy.  I've gotten a LOT better - you wouldn't believe the things college-age me let people get away with (I don't); but it's still SO hard for me, especially in the moment.  In the moment, I convince myself that whatever other people are offering is alright.  I convince myself that second best or third best or not worst is good enough for me, because it allows me to participate somehow.

Thinking it over this morning, I see all the things I could have or should have said or done -  I should have said something to the event person, right at the start, about arranging to come back at the end of the signing to meet with the authors.  I should have listened to the reading, gone to dinner, and told them I'd be back at the end.  I should have asked to meet the authors when I first got there - before the scheduled signing - once I learned that the event was inaccessible.  I should have done any or all of these things.  Instead, I let myself accept the solutions they offered, with the mindset that them offering any solution should be enough for me.

It isn't enough.  It shouldn't be enough. And that is why I left in tears, and that is why I was so upset last night (and am still upset today): Because it took so many spoons to get there in the first place, only to have my hopes dashed.  Because I rolled around a store I used to love for four hours, listening to authors I enjoy, and now my enjoyment of both of those things will be colored with the regrets of yet another time I didn't speak up for myself. Because my mother sat there fuming and asking if I wanted her to say anything, and it's embarrassing to have your mother realize you should be speaking up for yourself before you do. Because I never got my copy of will grayson signed. Because when they started shutting the lights off and making announcements over the loudspeaker about the store closing, I felt like nothing more than a scolded child.  Because I left in tears instead of raging at the very nice people who made some mistakes and missteps, but probably didn't deserve either.


 Because sometimes I just want to be able to go the fucking bookstore and see an author and not have to worry about spoons and stairs and being left out. 

---- Edited to add: Of course today I see on their website (which, since I generally follow them on Twitter/Tumblr -and again, I had been there before - I hadn't thought to double check and it says "Our downstairs event space is not handicapped accessible; if you need further assistance please call ahead of time for accommodation." So I can't even say that they weren't clear about it beforehand: it's just my own assumptions that started this snowball rolling down the hill. ----

Disappointed.

So I told you guys I was going to a book signing tonight, right?

I'll write more about it tomorrow (or later tonight: I just have to shove some food in my face), but let's just say that was the most disappointed I've been leaving a bookstore since I had my own money & didn't have to have a melt down every time my mother would hold up her 'just one' finger and I had to decide between the latest Babysitter's Club, or the newest Stephen King. (What? That's normal, right?)

For now let's just say that the signing was downstairs; the staff forgot or misplaced my book; and although I was told that the author would come up at the end of the night, and I waited almost four hours for her to do so, they basically closed the store around me with no author in sight. So. It's just one more of those little arrows that chronic illness gets to aim at you, and when your armor's not up to protect you from it, those bastards sneak right in and hit you where it hurts.