Okay. There are accommodations. Letâs say the terms of them are that you must get a letter from a specialist saying that you have a qualifying condition or difficulty. Great. So you go to your GP to get a referral to a specialist. Maybe getting to your GP is physically taxing or expensive. Maybe itâs impossible because youâre immunocompromised and no one even wears masks in doctorâs offices anymore.
Maybe you can get a remote appointment and maybe you canât. Maybe the appointment takes weeks to get. I hope youâre keeping an eye on that deadline! Maybe the appointment itself costs money you donât really have. But at least now you have it.
Okay. So now you need to get your GP to agree that you need to see a specialist. Your GP says that actually, first, theyâre going to ask you to drink more water every day and come back later and see if that wasnât the problem.
Okay. Appointment number 2. Drinking more water did not fix the problem (or waiting, or ibuprofen, or physical therapy, or whatever). So now you get the referral?
No. Now you need a blood test, to rule out that itâs caused by a vitamin deficiency. Appointments 3 and 4 are to draw blood and discuss the results. And congratulations! Youâre deficient in vitamin B whatever. So now you need a supplement. Obviously youâll need to be taking that for six months and then come back for another appointment to see if that hasnât fixed the issue. Oh, the deadline will have passed by then? Idk, I guess apply next year?
Congratulations! Itâs been six months and youâre no longer vitamin-deficient or dehydrated and youâre still disabled. NOW you get your referral to a specialist! So you take your referral and you call the specialist they referred you toâ
And they refuse to see you. They donât tell you why, they just donât think you really need to see a specialist. Idk, maybe figure it out yourself? Okay. So you call a different specialist who was also recommended to youâtheyâre not accepting new patients. OKAY!
So you call a different specialistâby the way, I hope you have a whole bunch of rheumatologists (or gastroenterologists, or neurologists &c.) in your immediate area, or else moving your search further and further afield could make transport expensive!
This specialist has this thing where they donât answer the phoneâyou leave a message and they call back. Okay. But when they call back weeks later, you donât get to the phone in time. Youâre sleeping or in another room (and, remember, disabled). So you have to call and leave another message and just kind of hope that youâre at the phone when they call you back the NEXT time. By this point itâs been about a year.
But you finally get in to see a specialist! They listen to your symptoms and say âyeah, that shouldnât be happening.â Theyâre going to try a course of treatment (btw, if it doesnât work, youâre going to have to go somewhere ELSE, because mostly doctors only want to try one thing). But in the meantime you have your â¨letter from a specialist⨠[sound of choir hitting C major chord].
I hope you had the time, energy, access, and money to do all of that! If you didnât I guess youâre just not applying for that thing after all.
Okay. You submit your letter from a specialist along with your description of the condition and your notes about how you anticipate it affecting your studies or work and what accommodations you will need and whatever else the form asks for. You get a call from someone who works at the institution in question and they talk over what you need and they say that you can get x, y, and z accommodations.
And now you have a special form with your name on it that will be sent to all relevant parties! And they'll know what you need and they'll have to give it to you! You have đaccommodationsđ [sound of choir hitting a sick F minor 7 add 9 add 13 chord]. So now weâre done! And everything is smooth sailing from here on out!
Oh. Oh you little baby. Oh you sweet summer child.
Actually, the department dealing with accommodations is like four different departments that donât communicate with each other. So somehow no one got you a badge to be able to access the ground-floor entrance of the building you need to be in (because, yep! It is *locked*!)
So you miss the first class or training or whatever, and you need to send a bunch of emails to do damage control about that AND get your badge. Who knows how long itâll take someone to get that to youâI hope you donât miss another day!
Sometime later, you contact your accommodations liaison and say âhey, can I get accommodation y that you said would be a possibility?â And they say. Huh. I donât know where the budget for that would come from? And youâre thinking... well, isnât that your job? To help me get the accommodations I need?
Nope! Their job is to help the institution not get sued without shelling out for every accommodation someone asks for by denying you everything they think they can get away with. So to get that aid worker, or ergonomic chair, or extra laptop, or extra computer application, youâre going to need to fight for it. Gee, I sure hope youâre not too exhausted from the last year of running this rat race, + the actual tasks of your job/degree, to do that!
Okay, well, still. You can get along without that thing as long as you're willing to run your health into the ground. Surely everyone has been sent your đaccommodation formđ and surely everyone has read it, so you should at least get the things specified on that.
Except someone forgot to send those out, so now a room youâre supposed to be in is up stairs / has no accessible bathroom nearby / no interpreter has been hired / whatever it is. Youâre asked if you can't try to get by without the accommodation? No alternative is offered. So you have to suck it up and struggle through this thing, or change to something else... if you donât quit or drop out.
Let's say you pass that hurdle. Now something new has come upâyou're cited for not doing [thing you can't do]. Maybe it was something that your đaccommodation formđ specified that you couldn't do, and maybe it's something that you forgot to mention.
Either way, you contact your liaison at the disability office. But be careful! The more âdifficultâ you are, the less theyâre willing to accommodate you... but the less difficult you are, the less you get accommodated... can you say âcatch 22â?
Sometime later you have to do something new, at a different site. Youâre told that everyone there knows youâre coming and will have a place for you to sit down. But no one told you that you would have to walk a mile to get there... âcanât walk long distancesâ was in your form! And when you get there you find that actually no one knew you were coming and no one knows what you need. No sight of the promised chair (bathroom / interpreter / &c.).
I guess youâd better not raise a fuss? But isnât this getting ridiculous? So you email your liaison... and they are decidedly terse with you. Without them on your side things are only going to get harder now!
Okay. Okay. Your supervisor / professer / whatever sends an email. Everyone is going to get together and do [thing you canât do]. Well youâve learned your lesson now so youâre not going to contact your liaisonâif theyâre not going to share the information they should, maybe you can do it yourself?
So you email your superior and say âI canât do x, which is outlined in my form!â They email back and maybe theyâre apologetic and maybe theyâre rude but itâs whatever. You take some measure to circumvent the thing you canât do.
Now you scope out every single building before events in that building and send emails directly to that department asking about accessibility. But in the course of trying to get accommodations directly instead of relying on your superiors and the disability office to communicate with each otherâsomeone copied in the disability office. Now your liaison hates you!
Have you dropped out yet? No? Okay.
Now you come across another requirement for the degree or the job that is another thing you canât do or can do only with extreme difficulty and/or pain. And youâre thinking well, here we go again.
You know your options are 1. drop out 2. suck it up or find an alternative on your own 3. bring it up with the organiser of the thing 4. bring it up with your disability liaison (who is only becoming more and more rude to you)âand 2, 3, and 4 require energy that is so hopelessly drained by now.
Youâre not able to focus on the thing youâre supposed to be doing because every separate activity has new forms to fill out and get approved, which requires time, energy, the eloquence to make your case, and for other people to afford you graceâby the way I hope youâve maintained optimism, a sunny disposition, and endless patience and kindness through all of this, especially if, god help you, youâre a woman and/or of colour! Or else theyâre not going to do that.
Throughout this time accommodations have been withheld as a cost-saving measure or to try to push the most disabled out of the program or else in order to punish you for being difficult, and youâre never sure which one. Your liaison and supervisors have told people about your disability who had no reason to have to know without your approval, which is illegal, but you canât raise a fuss without risking more retaliation.
Intermittently the elevator in your building has been going out and you donât know beforehand why it's out or how long it will be out for. Youâre not informed about scheduled maintenance. So over the course of months youâve been effectively trapped in places for hours. You haven't been able to pursue treatment for your actual health condition (which is a whole different byzantine nightmare) because the process of getting accommodations is so arduous.
Youâre exhausted, youâre feeling angry, bitter, hopeless, abandoned, youâre experiencing the worst health of your life, physically and/or mentally. Youâre not sure how much longer you can keep doing this.
So youâre struggling to figure out what to do and you try to vent to one of your peers. Youâre not going to be able to do x! Youâre disabled!
Oh! your peer says, politely surprised. But donât they have accommodations for that?
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