[Please let me know if I get my language wrong in this post – new to this.]
I had what felt like a completely useless and emotionally draining day today. However, I had a very educational, useful day as well: I got a taste of what disabled students, specifically physically disabled students, go through everyday. I have been dealing with what I thought was going to be a temporary problem for about a year. I have learned recently that it may very likely be a chronic injury, however.
I have had so many “half” problems. At least that is how I’ve seen it. I never thought of myself as disabled only because people don’t see my sleep disorder – and I have medication to treat it, for the most part. I’m about 80% back to what I was before the really bad symptoms hit. But it’s not something that is noticeable by other people (which can be frustrating at times, but also a privilege, similarly to masking as an autistic).
My “problems” I have are often things that cannot be directly solved and yet people assume still have no great significance on my life. Here are some examples:
- TMJ Syndrome (literally walking in 30 degree weather for 5 minutes hurts my jaw, running in general hurts my jaw)
- idiopathic hypersomnia (constantly dreaming, setting 10 alarms 1.5 hours before I have to wake up, generally sporadic sleep quality not correlated with number of hours slept – usually sleeping more makes me more tired).
- possibly undiagnosed (3rd type) Ehlers-Danlos Syndrome (no dislocations yet, mild joint pain daily)
- Hyperacusis/auditory sensitivity
And now, to add to that list:
Messed up foot with no known diagnosis, even after 3 different diagnostic tests. Confusion from doctors of how I even did something like this – even though it was originally presumed to be a “minor” injury. Now it is (likely) a chronic injury. Essentially a long amount of walking = pain. More than 0.2 or 0.3 miles of walking = pain. Like with all of my other problems, there is unlikely to be a “fix” for this one. Sometimes I feel like doctors are so useless for my problems, and I should’ve never even gotten it checked out, and kept walking on it. I don’t think it would be much different if I had.
I have never asked for accommodations at my school. I don’t know how it works, and meeting with strangers oftentimes results in nearly traumatic experiences of misunderstandings and shutdowns that I will remember for years (I indeed had one of those today). Having people misconstrue your body language constantly, and either instantly become mad at you, or infantilize you and treat you like a child who knows nothing, is hard. It’s emotionally taxing.
I had heard I should get a medical parking permit from my school, after thinking of convoluted strategies and ways to make my walk a little easier, like solving a puzzle every morning just in case there wasn’t enough parking. Shuttles are on a limited schedule during the summer, which means that if I want to not walk from/to the parking lot, I have limited time at work. This has been very frustrating.
So, deciding to get a permit, I got a doctor’s note and ended up meeting with approximately 3 people, all at different locations of course (so, walking was involved). I did everything correctly -talked to the right people. I didn’t know much about the permit so I asked about it, trying to clarify information. No one had really said what it allows you access too. I had assumed (because I’m ignorant) that one could park in faculty/staff lots, or at least one of them, with this permit.
Only after I was forced to walk about .4 miles to go to a different office and back, did I find out that, guess what – the medical permit literally doesn’t do anything in the summer. Do you know why? Because (at least one person informed me) a year ago they changed the rules so that people who have a medical permit can only park in student lots, not any other lots on campus. I can literally already do this.
I obtained a “permit” that did nothing. Absolutely nothing. And no one had told me.
At this point, this was the thought rolling around in my head for the rest of the day: Disabled students are fucked. That’s all I could think. I was already perseverating from meeting those strangers, after having a shutdown and hearing the same nearly traumatic Neurotypical Worry I always do. But that didn’t matter anymore – this one thought, it really stuck in my head.
I literally did all of that, and wasted an entire day of productivity figuring this out, as well as being completely emotionally drained from shutting down talking to a stranger, for NOTHING. At any point they could have told me this – like you know, before I made that 0.4 mile walk there and back to their same office, where they then told me this. When I specifically said “I don’t really know how this works.” I honestly don’t think the administration wants anyone to know about it, so then no one will make a fuss, or you know, use the permits, even if they’re mostly entirely useless for the majority of people who can use them.
Why I Am Angry
I am so upset.
I didn’t know much about the disabled community before I found out I was autistic (or before I was on twitter for that matter). I had always thought it was reasonable when someone was upset or angry regarding lack of accommodations, I just didn’t see it as my thing to be involved in. And I didn’t see much posted about it in general in social media – or in media, period.
I had always thought it was reasonable people were mad, but I didn’t truly understand why. And I probably still don’t truly understand it from that person’s perspective in a lot of circumstances. But today I got a taste of what it’s like for people to not give a shit about you. I found out that the school restricted medical permit parking and literally made it harder to get because there was less parking around campus in general due to construction. Yes – that’s what they said. Because there is less parking. It makes my blood boil.
So, because there’s less parking, you’re going to make it even more inaccessible for disabled people? Really? They’re more worried about taxpayers’ money than their own disabled students’ lives.
[Note: I am a hugely privileged human being. I am white, and I do not have to think about money like other people do. I am going to be fine. But people who do not have this privilege in life are not. I have no idea what they have to do to get to places. And if even a school, something that is supposed to provide students knowledge, won’t accommodate them, and isn’t accessible enough to literally allow people to go to work everyday? Then what about the rest of the world?
I was (and likely still am) very ignorant about these issues. I do not know a lot of things I should about disabled people’s experiences and lives. I know my own, but I understand that my experience is very limited – although I am autistic, and have always been autistic (though I wasn’t diagnosed), I did not have my sleep disorder or any physical issues really until a few years ago. My experiences are likely very different from a disabled person who’s been disabled from a young age. Although I can say yes, I am disabled, no one seems to think so – and I have rarely ever looked at myself that way, as I didn’t even know I had hyperacusis or auditory sensitivity until just a few years ago, even though I’ve been living with it my entire life. I’ve constantly been told, especially as a child, that I don’t have any “real” problems, and my real ones have been ignored. Similar to being autistic, I just assumed that I couldn’t possibly be disabled, as ridiculous as that sounds. I don’t have any problem saying I am disabled – but I feel like a fraud due to years and years of ableism from people saying that “we don’t have it that bad, so you should be grateful!” I don’t even allow myself to try it on as part of my identity. And that’s fucked up.]
I did not hear about this change to the medical permit. I didn’t even know there was a medical permit. However, it is clearly a joke. The campus is giant. There is no way all student lots are close enough to the buildings people work in. Every single student parking lot is more than 0.2 miles away from my building. Every. Single. One. And I think that’s one of the best case scenarios, in terms of distance, for most students. And they have just recently taken away even more shuttle buses for this summer and upcoming year.
The “alternative options” on their website are – take public buses, bike (can’t), or commute (make someone give you a ride, not that anyone I know lives near me). For me, that just leaves – take public buses.
You shouldn’t have to take public buses because your school won’t even allow you to park in a mostly empty parking lot in the summer (or a full lot in the fall!). That means the school is doing something wrong. Decreasing accessible parking for disabled people because you have a parking issue in general just shows us where your the priorities are.
What I learned today: Disabled people are fucked. And I’ve been ignorant.
I want to know how this rule changed, and if it had to go past the student committee.
I want to know why my school doesn’t care about disabled students.
I wish I had cared sooner.