fka wheelchairworm

Maybe you can get a remote appointment and maybe you can’t. Maybe the appointment takes weeks to get. I hope you’re keeping an eye on that deadline! Maybe the appointment itself costs money you don’t 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, they’re going to ask you to drink more water every day and come back later and see if that wasn’t 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 it’s caused by a vitamin deficiency. Appointments 3 and 4 are to draw blood and discuss the results. And congratulations! You’re deficient in vitamin B whatever. So now you need a supplement. Obviously you’ll need to be taking that for six months and then come back for another appointment to see if that hasn’t fixed the issue. Oh, the deadline will have passed by then? Idk, I guess apply next year?

Congratulations! It’s been six months and you’re no longer vitamin-deficient or dehydrated and you’re still disabled. NOW you get your referral to a specialist! So you take your referral and you call the specialist they referred you to—

And they refuse to see you. They don’t tell you why, they just don’t 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 you—they’re not accepting new patients. OKAY!

So you call a different specialist—by 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 don’t answer the phone—you leave a message and they call back. Okay. But when they call back weeks later, you don’t get to the phone in time. You’re sleeping or in another room (and, remember, disabled). So you have to call and leave another message and just kind of hope that you’re at the phone when they call you back the NEXT time. By this point it’s been about a year.

But you finally get in to see a specialist! They listen to your symptoms and say “yeah, that shouldn’t be happening.” They’re going to try a course of treatment (btw, if it doesn’t work, you’re going to have to go somewhere ELSE, because mostly doctors only want to try one thing). But in the meantime you have your ✨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 didn’t I guess you’re 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 🌟accommodations🌟 [sound of choir hitting a sick F minor 7 add 9 add 13 chord]. So now we’re 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 don’t 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 it’ll take someone to get that to you—I hope you don’t miss another day!

Sometime later, you contact your accommodations liaison and say “hey, can I get accommodation y that you said would be a possibility?” And they say. Huh. I don’t know where the budget for that would come from? And you’re thinking... well, isn’t 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, you’re going to need to fight for it. Gee, I sure hope you’re 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 🌟accommodation form🌟 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 you’re supposed to be in is up stairs / has no accessible bathroom nearby / no interpreter has been hired / whatever it is. You’re 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 don’t quit or drop out.

Let's say you pass that hurdle. Now something new has come up—you're cited for not doing [thing you can't do]. Maybe it was something that your 🌟accommodation form🌟 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 ‘difficult’ you are, the less they’re willing to accommodate you... but the less difficult you are, the less you get accommodated... can you say “catch 22”?

Sometime later you have to do something new, at a different site. You’re told that everyone there knows you’re 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... “can’t walk long distances” 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 you’d better not raise a fuss? But isn’t 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 can’t do]. Well you’ve learned your lesson now so you’re not going to contact your liaison—if they’re not going to share the information they should, maybe you can do it yourself?

So you email your superior and say “I can’t do x, which is outlined in my form!” They email back and maybe they’re apologetic and maybe they’re rude but it’s whatever. You take some measure to circumvent the thing you can’t 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 other—someone 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 can’t do or can do only with extreme difficulty and/or pain. And you’re 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)—and 2, 3, and 4 require energy that is so hopelessly drained by now.

You’re not able to focus on the thing you’re 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 grace—by the way I hope you’ve maintained optimism, a sunny disposition, and endless patience and kindness through all of this, especially if, god help you, you’re a woman and/or of colour! Or else they’re 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 you’re 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 can’t raise a fuss without risking more retaliation.

Intermittently the elevator in your building has been going out and you don’t know beforehand why it's out or how long it will be out for. You’re not informed about scheduled maintenance. So over the course of months you’ve 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.

You’re exhausted, you’re feeling angry, bitter, hopeless, abandoned, you’re experiencing the worst health of your life, physically and/or mentally. You’re not sure how much longer you can keep doing this.

So you’re struggling to figure out what to do and you try to vent to one of your peers. You’re not going to be able to do x! You’re disabled!