this is a post for Blogging Against Disablism Day. this is my first year doing it and i’m excited and nervous. please do follow the link; there were such amazing things to read last year, and i’m sure this year will be equally rewarding.
why is the accommodation of flexibility so hard for people to provide? does it have to do with the fact that it would benefit everyone? i can think of so many scenarios in which i just need a little flexibility in order to be a part of things.
i’m not in school this quarter, because financial aid does not care why you need to be part-time; it won’t pay a dime if you want to go less than half-time. my graduate program is hard, invigorating, wonderful, but it requires so much out of me that i consistently struggle when taking two classes. i want to give the program the attention it deserves. i want to do my best. hell, i’m doing this whole thing in the hopes of getting off of disability income – i’m doing computational linguistics, not theoretical linguistics. i’m being practical. but i can’t go to school, because i cannot pay for it myself, and i can’t seem to do well in two classes at once. not without borrowing heavily from the future. i don’t know yet how i’m going to manage in the fall. just hope that my time off recharged me enough so that i have reserves to spend again. and start the whole cycle over.
and anyway, what if i couldn’t do even one class? i’m motivated, smart, suited to what i’m studying, but sometimes life crashes in and i spend the week in pain and fear, with not even enough good time and energy to keep myself fed. i am so jealous of everyone else in my program, who can spend 80 hours on a homework. who can work and go to school. who can flake off sometimes, counting on being able to make up for it later. i have to push so hard to make sure i’m doing work whenever i possibly can, because i never know when i’ll get thrown back into the abyss. why couldn’t i do the work in my own time? these classes are made entirely of homeworks, for the most part. why couldn’t they record the lectures, have me watch at my own pace, do work at my own pace? so many restrictions seem needless to me. accommodations in education have the delightful caveat that if anything is too hard or too different – too accommodating - they don’t have to worry about it.
stress makes my disability worse, which unfortunately tends to work out to mean that the more i need to do something, the less i can. the more important a homework is, the harder it is, the closer to the deadline i am, the harder it is to buckle down and focus. i have to fight through worse and worse panic attacks. i work so hard at just doing it, not caring, not worrying what it will make anyone think of me. but i can’t. sometimes it’s hard to type a single line of code, because i’m afraid the grader will be judging me, laughing at me, looking down on me. when i get a 94 out of 100 i have this barely controllable impulse to run to the teacher or grader and apologize profusely. it’s my job to learn the material; to turn in something that is not right, that i know is not right, feels just awful. it feels like i’m throwing away any chances to be liked or respected.
sometimes i want to scream when i encounter the subtle stigma that hangs around me. i already have terrible social anxiety, so interacting with classmates is exhausting and requires lots of recovery time. but it’s worse to stand out, so i make the effort to interact pleasantly and normally. i always show up early, so i end up having to try to make conversation with the others that arrive early. the first conversation always goes the same: they ask me what else i’m taking, i say that i’m just going part time. they say, “oh, are you working somewhere?” because that’s the story for i think every other part-time student in this program. they have fancy jobs at microsoft or another cushy place; often, their work pays for them to get the degree. (i don’t even want to think about how much debt i’m going into for this. all without the guarantee that i’ll be able to work afterwards – yes, this degree “pays for itself”, but you do have to be able to work for that to happen.) if i say “no” they ask what i do with my time. if i say i’m disabled, they ask me what’s wrong with me. the second that i mention that it’s psychiatric, that’s the second their eyes shut off and glaze over. they retreat from interest and friendliness into politeness.
and when we have to do projects together, i know i’m frustrating to work with. i know they think i’m being lazy when i don’t finish my part quickly. but i swear i spend far more hours than they do, psyching myself up, fighting with bugs for hours when i can concentrate because it triggers my anxiety so very badly to ask for any kind of help. they dash off a quick email to me, letting me know where they are, even asking questions, and it takes them under ten minutes. i spend an hour agonizing over a 10-line email, and i have aeron or edges read it because i worry so much about sounding perfectly normal and appropriate. sometimes i can’t hit “send” and have to have someone else do it for me. then i panic, knowing i can’t take it back, worrying about how they’ll take it. if i can experience any relief at having sent the email, then they reply a day later and the cycle starts all over again. and that’s not even talking about all the time it takes to code, all the hours when concentration completely eludes me.
i don’t mind hard work, but i hate that everyone thinks i have it easy when i’m putting every waking breath into either doing the work, or charging up to do the work. i end up having no time or energy for housework or eating, because those things are already hard for me. and when self care falls by the wayside, then of course it makes it even harder to concentrate and do the work, which makes me struggle with it all the more, leaving even more self care by the wayside. i am so humiliated and frustrated at how hard this is for me. i feel like a failure for this empty spring and summer. eventually, i need to do an internship or a thesis project. i can hardly even handle ordinary classes; how am i going to actually finish?
and when i do, it’s just going to get worse, because i have to try to enter the workforce. getting a part-time job as a programmer is already a rare occurance; what if i need to work less than 20 hours some weeks? why is it so unthinkable to have a variable number of hours? and what if, sometimes, i’d only be up for some of it? what if i needed to telecommute, sometimes or always? they don’t have entry-level computer science jobs like that. not to my knowledge. and of course, on top of that, my social anxiety means that even scheduling the interview will take everything out of me, let alone going to it, let alone shining in it. i’m pretty sure i could never do a technical interview; the pressure would blot out any ability i had. and if i need accommodations for the interview process, then they can decide not to bother with my disabled self, and give some other reason for not hiring me. (like when i applied for an apartment, was turned down because i was on section 8, and then when i informed them it was illegal to refuse me on that basis in seattle, suddenly there was no reason, just “a lot of other applicants”. even though they let me put a deposit down when i applied.)
some of the accommodations i might need, like telecommuting, are already in place, but not for disabled people. they are for people who have “proven themselves” for years, they are not available to people who need them.
people act like receiving disability income is a cardinal sin, a drain on society, a negative. but the same people make it impossible for me and people like me to be employed. we want to “contribute to society”. society doesn’t want to let us; it just wants to complain about us and call us lazy.
i’m not lazy. but sometimes i’m tempted to give up.
Tags: ableism, accommodation, disability, school, socialanxiety
Ahh, flexibility in education. Just doesn’t happen, and especially doesn’t happen in graduate schools which train the people who will train the next generation. So we are in a circle of modelling all the wrong behaviors.
It amazes me that these “most educated” people can’t comprehend that certain types of deadlines cause problems for some. That group work is demeaning for some. That attendance must always be a flexible thing.
Keep struggling. Don’t let them stop you.
Thankyou for writing this. I’m sorry those idiots glaze over and don’t listen to you.
x
While I understand that the schools could do more there has to be a point when line is drawn. I don’t know exactly where that line is but they can’t do everything for everyone.
I, too, have DID so I understand the struggles but there came a point when I had to leave the excuses behind. I read your blog and can relate but now that I’ve moved past all of that I look at it and think that so much of the time it’s just excuses. I have children to take care of, more than the “norm”, in fact. My kids don’t care that I have DID, they know that I will be there to take care of them. I can’t make excuses for not having clean dishes for them to eat breakfast in, I can’t make excuses for not giving them clean underwear, I can’t make excuses not to do school with them every single day. These things have to be done even if I have DID. Sometimes you need to leave the excuses behind, do the hard, thing, move past it and enjoy life without being the victim.
thank you so much for expressing what we have never been able to express as someone(s) that struggles so much in the learning environment and the rigid structure it has.
@Helen, Brina – thanks! it means so much to know that my words might apply to others’ experiences.
@Ira – yes, it is amazing what education seems to miss. sometimes i wish i were in some humanity where people would supposedly be more aware… but maybe even that is wishful thinking. thanks for the encouragement. (o:
@Grace – i understand that you are trying to speak about your experience, but please know that everyone’s story is different. it’s great that you can be a parent and do whatever else you need to do. but to be honest, being told that i’m making excuses raises my hackles. it sounds an awful lot like “just snap out of it”, “get over your past”, “just don’t think about it”. there are so many ways that these dismissive statements are damaging (not just to me.)
as far as drawing the line, i think that was my point more or less. there is no real reason for the rigidity of higher education. making the kinds of accommodations i’m talking about would not make the work easier. they would not circumvent any pieces of the program or prevent me from learning the skills i’m supposed to be learning. to the contrary, they would enable me to participate as fully as i can, and learn much more thoroughly. the line is so arbitrary and so thoughtless.
if you have been reading my blog, you’ll see that i’m able to function a lot more than i used to; it’s a victory that i got my undergrad degree at all, let alone enrolled in a new program. but even if i were not able to function in the world at all, i still would not be “making excuses”. i have been making excuses for everyone else, without ever giving myself room to be where i am. i have trouble even using the accommodations i have, because i am busy criticizing myself and deciding it would be too much trouble for the teachers. nobody should have to apologize for their function level, nobody should have to apologize for prioritizing what little self-care they are capable of.
i think it’s high time i stopped making excuses for why the world around me won’t bend, and started making more “excuses” for myself. if by making excuses you mean taking care of myself, and only doing what i am able.
@Grace: DID is different in every person. And it varies a lot over time and depending on whether you’re doing therapy, have a lot of triggers & stressors, etc. I’m the spouse of a person with DID and for 3 years she was on disability leave. She was unable to work at all. Today she has a great full-time job.
I am happy that you were able to get to a place where you are able to function much better. And I’m sure you didn’t intend your comment to come across as blaming and shaming. It’s not very hard to shame a person with DID, as you must know.
The thing is that if the schools gave into every single “need” that anybody ever expressed the tuition would be far higher than the already outrageous rates they already charge. It is good to be challenged sometimes, to think, “I ether have to deal with this or not participate.”
I do understand that there are times when things do need to be changed but I understand that we need to try and meet in the middle, they can’t do it all simply because they are the school.
I’m glad you are making strides and that everybody goes at their own pace. I used to be on your side of it too when I heard people talking about getting over their past but really that’s what you have to do. You have to choose to move on at some point. You have to decide not to be the victim anymore and participate fully in life if that’s what you want to do. You aren’t being fair to yourself otherwise.
@Grace – it’s tempting to refute/address your points with another long comment. but i don’t see that conversation going anywhere.
instead, i’m trying to decide if it’s ironic that i encountered disablism because of my post for Blogging Against Disablism Day, or just to be expected.
I’m not lazy either, and though I’ve often been tempted to give up (or been told by others that I have, by receiving SSDI), I know that I continue to fight, everyday. I’m sorry things are so difficult for you right now, and I hope they improve soon.
And I’m sorry I didn’t read the rest of the comments before I pressed enter. I’m so glad you are able to take things with a grain of salt, and to recognize irony when it hits you right in the face. Although I wish it wouldn’t hit you right in the face.
The irony of it all is that the myriad didn’t want us coming to their support group for people who are disabled by DID. I’m not posting this because I’m mad about it because I’m not but boy, that is irony!
@Grace: I searched my past email for the email address you used to comment, and found only three emails from you many years ago, to the naked-multiples mailing list. None of them talked about our group – 1 was before we started group, 2 were just after. I don’t think I’ve ever met you or talked to you. We have never turned anyone away from our group. I apologize if I have offended you, but I’m frustrated that you would come here and say these things without context.
I do think it is disablism for you to come to my blog, over-universalizing your experience, and telling me that my experience is not real or valid. You do not know my story, no matter how much you think you do. And I am sad that that happened in response to my trying to speak out about things that I think affect a lot of people.
oh, and @NTE: thank you so much. i truly appreciate the much-needed validation right now. i liked your BADD entry too, there are so many ways to get isolated…
(remembers the many times that they have told people to get over it)
you know, i was really functional for a long time. and for me that was choosing “what should be” (i need to be going to school, taking care of my girlfriend, functioning) over “what is” (i am dying inside, running on empty, poisoning myself). i was lucky enough to have that choice. i don’t anymore, but that’s neither here nor there.
and that was tough. but you know what’s tougher? listening to myself. allowing myself to be all the “bad” things i’m not supposed to be. at least for us. that is so much harder. and every time, i think, we’d choose it the other way. we’d get over it, move on, and ignore all the little nagging snags until we broke down again, pretended it was unrelated, got back up, and started all over again.
and i guess i’m saying this for 2 reasons. one, i think that the idea that someone is “choosing” not to function is … i mean if they could, wouldn’t they? and if by some miracle they can. they can put it all away and kick those parts of themselves out, is that better? for who? do we owe it to somebody to be as functional as possible? as detached and “over” our emotions as possible?
and for us, there has never been an “over”, just a “later” and a “subtler” and a million little cuts over time so you can’t trace the source.
and this is all rambling but myriad you are, as always, inspiring to us in ways we want to grow. or something.
love,
edges
also, i am lazy. and disabled. and proud of it.
Maybe we had a different e-mail address – we have quite a few. I know for a fact you turned us (Mia specifically)away because we had a nursing baby. We really could have used the support at the time but now I’m glad we didn’t get involved. You really should get your story straight though.
I share a lot of similar thoughts about the program. I hate it that I’m so much less fluent in the matters of programming and algorithms and shit than most other people. Oh, okay, so I *don’t* have 5+ years of industry experience. SO? Maybe some people just need to get over this feeling of “what fits me must fit you.” I spend hours on things that take others fractions of that time. I pound away at a problem until I’m ready to off myself, or until I get it working, and then life feels so great… For a few minutes.
I’m not sure how I’m going to handle work after graduation as well. I work now, a lot, I have ridiculous medication expenses and no prescription insurance, and without medication I’m a wreck. But all of these “jobs” are part-time and if I have one of those days when I feel horrible and trapped and sick and suffocating and can’t get out of bed and can’t stop crying I can just take time off and no one will say anything. But… in the “real job” world that won’t fly. I get so anxious over opening e-mail it’s ridiculous. Most of the time I can’t pick up the phone unless it’s my parents or my husband. And I’m always feeling sick, some days are just better than others, and there are hours of the day when nothing hurts. Coming to every class is a huge effort, always, and often I don’t make it in. I’m trying not to think of what happens when I’m out of school and can’t pay back the shit tons of money that I owe…
For now I’ll just keep playing the game where I pretend like I know what’s going on in classes, make stupid jokes in class and in response to someone being a snooty know it all, and try not to miss classes. Close my eyes, and start walking across the freeway that school is. Maybe I’ll get lucky and get to the other side alive.
-hugs- you’ll make it because you want to and because you’re dedicated. The fact that you have to work harder than most other people to be where you are means you are strong, in ways many other people can’t even imagine. There’s no struggle more difficult that that which goes on within, but it’s the hardest struggle for many others to understand. I guess I shouldn’t be annoyed at people’s lack of empathy… They aren’t doing it on purpose, they just don’t know.
Grace,
Yes, we talked about the idea with all the group members, and everyone agreed that it didn’t feel right or appropriate to have a baby in group with us. People talk about memories and other very upsetting topics, so we did not think it would be good for a child, and additionally, group members did not feel it would continue to be a safe space for them. I think that is very different from arbitrarily rejecting someone, and it was not a personal decision alone.
Oh, my dear myriad, thank you for having the words to speak against disableism. Everyone has a unique experience, you can’t speak for me, and I can’t speak for you, but that someone is speaking out the frustration, the rage, the injustice that goes on all the time in so many invisible ways, thank you. Thank you. And you know what? It DOES suck. A LOT. I hate that people might think you’re lazy when you’re working, like, a million times harder, you appreciate when you even can work all the more, and you wish to the Universe sometimes that other people could understand. I have a lot of experiences I wish I could tell people about, and maybe I’ll be able to little by little, but dammit, your post gives me some hope.
bringing this back to the topic of the post, i think it’s absolutely the behest of liberal institutions to address *all* of the needs of the communities they serve. what myriad requests here is not a massive output of human energy, but rather a simple change in policy regarding financial aid. some would argue that the ADA should address such needs. at base, the academy imagines itself as a civic institution that facilitates the flow of ideas and the training of the citizenry. to do so, it must acknowledge and address the differences in student populations.
also, student services are not why tuition spikes have happened in the past decade-a growing administrative class is. salaries for mid-level staff have become significant financial burdens on higher ed institutions. also, the decline in public funding for higher ed has trickled down quickly to students, making the out-of-pocket costs bear the burden of financing higher ed rather than states and the federal government making education a fiscal priority. at any rate, it is ill-advised to blame students who need accommodations to gain an education for soaring tuition rates.
If you could you would just like anyone else. It is unfair that psychiatric disability to many means you are lazy or not trying hard enough. I get down on myself because I use to be able to work, keep up the house, take care of my child and socialize and now it takes every thing I have sometime to care for my child part time. But like you Myriad I have always had to work harder than others to get to the same place. Other people can’t see that. If you were fatigued for anxious for what is seen as a OK reason ie. physical illness peoples eyes wouldn’t glass over.
I don’t think that most people ask or need any accommodations for school so if needed I don’t think it costs much in money or time to do this.
I also don’t think you can compare parenting and being able to do other things. I find that I can parent, not maybe as I would always like, but who does. When my son leaves many times all I can do is sleep, be overwhelmed, anxious. All the things I think I should be able to catch up on because I don’t have my son I can’t do. Some of them things I can do when he is with me. It baffles me.
I think someone put it very well that I can parent part time and it is probably good for me but I have no more psychological reserve.
If I didn’t have a child I don’t think I would be doing even as well as I am.
Myriad’s you are doing much more than you were able to do in the past and you have to take care of your basic needs to be able to do anything else. It would be nice if instead of calling us lazy they tried to accommodate so we could contribute as much as we can. It is not like it is easy being disabled.
Keep working at it look at all the things you have already done and you weren’t sure if you would be able.
I think disableism and stigma especially of mental health problems is alive and well.
@ Grace
As a member of the AM group, I will add that I thought it was inappropriate to have a baby in a support group where intense emotions are often felt and memories and other deep topics are discussed. I believe that babies hear things and even if they do not understand on the level we do, I strongly believe that what they hear does go into their subconscious. Additionally, I didn’t feel comfortable at all subjecting a child to such an environment where intense emotions and the energy in the room at times can be stressful due to the triggering content. Of course not every group is like that, but usually at least one person’s share is and at times the entire group is intense. In my opinion, children of any age can pick up the feelings and energy in their surroundings and I just didn’t feel comfortable having a baby there. If you wanted to come alone that would have been perfectly fine with the group.
I realize that you said you really needed the support at the time. I’m sure you did and I’m sure you didn’t and couldn’t leave your baby either. However, I stand behind Myriad and the rest of the group members who felt that it wasn’t appropriate or healthy for a baby or child to attend group with his or her parent. This was my primary concern, but there were also other factors involving the logistics of any baby in an environment.
Julie
@grace — i think every other thing you said was negated when you mentioned being turned away by the group. I’m far away and not part of the group, but I would NEVER want a baby in a group like that, and some part of you should have understood that.
i think you’re bitter about a past grudge and trying to over-compensate by “proving” how much better you are, and how much you accomplish and self-sacrifice, but we all quite too clearly through that screen, hon.
cut the shit about telling others what to do.
cheerio!