Devoid of Care
January 7, 2021
Hello comrade,
I am writing this because I want to share my story with disabled students past and present, all the disabled people thinking about going to school, and all the people who may come across a disabled student/person - so that they might be a better ally. I have filed a lawsuit against CCA - 41 pages worth of Civil Rights violations, detailed in this complaint. It took me two years to get up the nerve to call a lawyer. It wasn’t bravery, it was more like a rage that boiled over - without a choice. Seeped in fear. I didn’t tell anyone for months, and then, only a couple of people.
But I share this story, now, because I worry that the same discriminatory behavior by the administration will keep happening to other disabled students (and faculty and staff, for that matter). I worry that CCA will continue to be non-inclusive and inaccessible, despite everything I have gone through. All the refusals of care, demeaning conversations, the negation of my lived experience, gas-lighting, and embarrassment. The hundreds of hours spent drafting emails, crying rage tears, crying frustration tears, explaining and justifying. So much emotional labor.
During grad school there were hushed whispers from friends - ‘you should get a lawyer’ - but no one knew what to advise. Or what was legal or how to make change. ‘Isn’t there a person that checks accessibility and ADA violations that works for the city or the county, like the fire marshall?’ friends have asked. I’ve tried to find out, but I don’t think there is a code-checker with a little black ticket book. I imagine this person would look like a British meter-maid, with a black and white checked hat and a vest, handing out tickets to red-flushed administrators. I’m under the impression that architects should know and check for ADA codes when designing and then inspecting the integrity of the space after it is built. Maybe development is so corrupted by the value of space that somewhere along the line, the initial plans undergo space-reduction and no one checks again because of the relentless grind of capitalism. This is all perversely funny, considering CCA has a renowned architecture program. It seems strange that none of the architects who teach and none of their students would notice the 30+ pages of ADA violations on campus. The doors to every classroom and every entry on campus are noticeably heavy, surely, even for an able-bodied person. And when the push buttons are broken, surely, everyone notices.
The real systemic issue is that the ADA is full of loop-holes. The burden of holding businesses and institutions accountable is on disabled people.(1) The only way to make change and enforce the law is to take legal action. And our legal system is arcane and exhausting and extremely confusing. For instance, did you know you can never speak of what happens in the settlement process? I did not.
Society believes that disabled people are just trying to work the system to make money when they take legal action. When in fact the system is flawed - businesses don’t have to change unless they are sued. And then they still don’t have to change if the plaintiff is no longer affected by the access issue. Because COVID happened during my injunction hearing, and I graduated before trial, CCA will not have to make any policy changes. I share this in hopes that this knowledge will reach a student before they waste valuable energy fighting CCA and just get a lawyer. Celia McGuinness has a very exhaustive list of ADA code violations that could surely help someone else.
You’ve probably seen me on campus in my electric wheelchair. I have a genetic, degenerative neurologic condition that causes muscle weakness and pain, among other things, that affects everything from my feet to my eyeballs. In my wheelchair, I am very visible, but I have also been invalidated, isolated and unseen. I have oscillated between being a vocal self-advocate and being gas-lit into silence - believing that I wasn’t worth space, or time, or that I should be content to not be able to open most of the doors on campus. It is painful. And exhausting.
We all need to know we are not in this alone. I know I do. This story is for those with physical disabilities, but also those with invisible disabilities. A lot of my issues have been physical in nature, but invisible disabilities are just as valid.
People with Disabilities are the largest marginalized group, 1/4th of the US population - 1 billion people worldwide. Discriminatory prejudice and stigmatization cause disability to be an often under-recognized group. Society has deeply stigmatized disability, causing many people to be embarrassed to claim they have a disability, let alone speak out about it. People judge me based on how I look. People comment on my existence as if it is a joke. Daily someone says something like: “Do you have a license for that?” A man in an elevator called me a “retard”. The very first day of school, my chair fell over on top of me inside the CCA shuttle after the driver didn’t lock down my mobility device. Bus drivers yell and huff and sigh at me. At least seven incidents happened on the shuttle bus, and seven times the school did nothing more than tell me it would never happen again, despite my pleading for them to provide another means of transportation, so that I could have the same equal access to free transportation as my colleagues. I am not asking for special treatment. I am asking to be able to do the same thing as everyone else. Open bathroom doors. Use the bathroom. Open front doors. Open classroom doors. Use shops. Use a dorm room where I can move around unencumbered. Use the shuttle. These things have been built to exclude me. Decisions were made guided by money instead of inclusivity or care or basic human needs.
People with disabilities are constantly refused entrance to buildings and bathrooms. And on top of that, we are told it is our problem, because society views disability from the medical model - that something is wrong with the disabled person, therefore it is up to them to “fix” it or “fix” themselves. We should view disability from the social model- which proposes society and the built world is what disables. Society - institutions - prohibit true inclusivity. Learned and internalized ableist ideology and behavior marginalizes.
For example, George Sedano told me it was my job to fill out facilities forms and follow-up with facilities because I was the only one who needed to use the door openers. My argument is that, in fact, everyone uses the push-button door openers. The door openers were constantly out of service. I exchanged hundreds of emails arguing for my basic human rights - emails about doors to enter buildings and doors to enter bathrooms.
The burden should not be on students with disabilities to fill out lengthy forms, or follow-up on said forms. Disabled people shouldn’t have to do all of the labor. Students shouldn’t have to do this free labor. Poorly paid adjuncts and staff shouldn’t have to do this labor. (I encourage you all to protest filling out forms for administrators. Refusal as protest. It is not the students job, we are not getting paid to maintain the building function and know the elaborate procedural function of CCA.) It is complicated on purpose.(2)
Jeanine emailed me once “It seems as if you may still have questions about the accommodations process at CCA.” My internal reply: no shit. The accommodations process is entirely confusing and in favor of cost margins that are devoid of care for disabled students, in my personal opinion. It takes weeks for requests for very reasonable accommodations to be denied. Using very lengthy emails, to say simple things in confusing ways. Usually placing the blame or burden back on the disabled individual, in a never-ceasing cyclical game of administrator email hot potato.
We should not have to learn a complicated hierarchy and procedures and who to contact for what, and keep track of endless forms. To follow-up with the correct department and to make sure it was done. In fact, they don’t want us to, because the inefficiency of complaint is exactly what the institution wants. They do not want to do the work, to resolve our issues, to fix the inequality. They do not want to pay for accommodations. They do not want to buy a new accessible button. They want our complaints to get lost. For us to give up. For us to throw up our hands and keep our heads down, like good, polite, quiet institutional subjects. Capitalism sacrifices the weak, to feed the machine. But our lives are worthy of equal access.
Being a self-advocate is exhausting, I have emailed back and forth with the school about my disability at least 400 times. They have robbed me of time I will never get back. Time that able-bodied students spent working on their art practice I spent debating the validity of my civil rights. Arguing for my ability to enter the bathroom. It shouldn’t be up for debate - or argument. I spent hours questioning my entitlement to those civil rights because of institutional gas-lighting. Arguing with administrators about the nature of time, and how getting extra time to complete assignments is negated by the waste of time of the accommodation process. Extra time to complete tasks becomes a time debt.
The additional time accommodation is utterly useless and is merely a piece of paper with a list of reasons the instructor can deny extra time to the student because granting extensions is solely up to the discretion of the instructor. And, you have to spend time going to get a doctor’s note for this piece of paper. No one should be able to invalidate another human’s access needs. The accommodations process is exhausting. Students have to meet with Access Services multiple times and get a doctor’s note to specifically state each need. And still, accommodation requests are denied.
I am speaking up and fighting back against the institution, it’s been really hard and rather excruciating. I’ve felt afraid and scared. And alone. But I hope this makes other disabled people feel less alone. Less scared. I hope this paves the way for other disabled students (and faculty and staff) to join in, and speak out. To hold CCA (and all systems of oppression) accountable - to make change. (3) I hope this helps other disabled people find support. I hope this finds other disabled people who need it. I need to find them, too. I want to hear their stories. Please share this story with them.
I’m pushing back on my own internalized ableism and sharing with you now. Because:
We should not feel embarrassed by our needs. We are not a burden. We deserve equality. We deserve access. We are worthy. Reasonable accommodation shouldn’t be a fight - accommodations we need to in order to learn - to exist - are always “reasonable”.
In Solidarity,
Jillian Crochet
Some tips: Refrain from telling a disabled person they are an inspiration. Or a hero. Don’t use them as inspiration. Don’t offer cures or advice to “fix” disabled people. Refrain from sharing about that “one time you broke your leg”. Because there is no way to truly understand if you ‘got better’. Don’t imply a disabled person’s life isn’t worth living. Use the Disability Justice framework to prioritize BIPOC people with disabilities and those with intersectional identities. Please do the work with me, so that we all might challenge the internalized ableism that we didn’t even know was there. There are many resources out there. Some of my favorites: Carolyn Lazard’s Accessibility in the Arts: A Promise and a Practice; Sandy Ho, Mia Mingus, and Alice Wong’s #AccessIsLove Reading List and Sins Invalid’s Disability Justice Primer
_______________________
(1)I started learning about this, just a few years ago, after reading the wiki page on Marta Russell, spurred by the link as artwork by Park McArthur https://en.wikipedia.org/wiki/Marta_Russell
(2) See Sara Ahmed’s On Complaint. This lecture is amazing.
(3) Change that should have happened, at least, 30 years ago with the ADA.