By Karen Edlefsen
The following is my own personal memory of the events that transpired. By definition, this may differ from the memory of others involved. The majority of the quotes are taken directly from emails, websites, lecture slides, and assignments. However, quotes from personal conversations have been reconstructed to the best of my memory.
Step 1: Figure out what the first step is
After you are admitted to your top-choice graduate program, you are excited! But you are also nervous. Getting through undergraduate was a hard and bumpy ride, and you partially attribute your eventual success to the support of your school’s disability services office. You hope that your program, School Psychology, which focuses on helping children with disabilities, will have accommodations built into the program, like many of your undergraduate classes did. But you’ve heard horror stories about getting accommodations at this university, and you can’t help but notice that the program’s mission statement, which highlights “culturally-responsive” practices and “effectively serving individuals from all cultural, ethnic, and socioeconomic backgrounds,” doesn’t mention disability. You hope that isn’t a sign of what’s to come. You continue to push these thoughts to the back of your mind, telling yourself it will all work out. Besides, none of the emails you receive between being offered admission and the start of classes so much as mentions disability accommodations, so you figure it won’t be a big deal to sort out when school starts.
At orientation, disability accommodations are mentioned casually, at the end, as something you should have already applied for if you need them. Your heart races and you figure you should probably look into how to apply, just in case. Since no one has given you information about how to apply, you head to google and eventually find a page called, “Disability resources for students”.
“Is this the right page?”, you wonder. The top has giant red letters that say, “COVID-19 Updates”. To the side, the menu header reads, “FACULTY” and has links for “Instructor login to myDRS” and “Resources for Faculty”. You scroll down the page and see icons that say, “myDRS” and “New Student Application”. “Is that what you are supposed to click on?” Under “New Student Application”, it says, “Click above to apply for DRS services”. “What are DRS services? Is that what you want?”
At this point, you are ready to give up entirely, but you decide to click on “New Student Application” to see what happens. You are taken to an application page that looks eerily similar to the one you used to apply for the program. “ONLINE STUDENT APPLICATION,” it reads at the top. “Application for what?” you wonder. You scroll down the page. After a large section on personal information, you finally arrive at a section cryptically entitled, “Questions”. It asks you to “Please describe your disability (or temporary medical condition) and how it may impact you as a student”. This must be the correct form after all. You pause. “How much are you supposed to write here? Do they want you to list all of your disabilities? How are you supposed to know how your disability might impact you in graduate school if you haven’t even started yet?” You continue reading. Further down, you are asked, “What classroom or academic accommodations would you like to request?”. “What options are there?”, you ask back.
Step 2: Confirm that you don’t want accommodations anyway
After your first class as a graduate student, you stay after to talk to the professor. You have met with her a few times, and she seems nice enough. You say you have a bit of an awkward question. You received accommodations as an undergraduate, and you are wondering about maybe getting them for graduate school, but you are worried that your professors may react negatively. Her face scrunches in surprise, “oh!” she says. She pauses. “You know, I think we had a student request accommodations once, maybe last year or the year before…” she trails off. “I think it’s a bit of a complicated process, and we really do expect everyone to be able to participate fully in the program”. She pauses again before adding, “but of course we won’t judge you if you request accommodations”. It isn’t the response you hoped for or expected.
Step 3: Experience a significant health issue
Getting started each quarter is a struggle. In your undergraduate program, you received syllabi for each class a few days before the first day of classes, and they were all in the same format. Here, you get each syllabus on the first day of each class, and they are all formatted completely differently. It takes you hours, for each class, to decipher what you are supposed to have completed for class each week, when assignments are due, and where you are supposed to be when. Going between syllabi with completely different formatting, week numbers, and ways of indicating what is supposed to be done before class, during class, and after class, is nearly impossible, so you resort to translating each into a system you understand. Before you even receive all your syllabi for the quarter, assignments are due. You are behind and you’ve barely even started yet.
As you attend more classes and complete more coursework, you have a growing sense of unease that you can’t quite put your finger on. Something about assignments asking you to, “please identify 3 areas in your life that you would like to be vulnerable in,” and lectures telling you, that “Ingredients for a Healthy, Happy, Resilience-filled Life” include things like, “optimistic thinking”, a “healthy, balanced diet”, and, “perseverance”, make you deeply uncomfortable. You are taught that kids who do things like repeatedly forget their pencil or look at their feet when their teacher is talking to them, require intervention. It’s either a “can’t do” or a “won’t do” problem, you’re told. They either need extra instruction because they haven’t learned the skill, or they need proper reinforcement with things like stickers and snacks. You reflect on how, in every single one of your jobs, from parking lot attendant to daycare teacher to research coordinator, pencils have been provided. And how, for you, looking at faces is distracting and makes it harder for you to learn and understand.
As time goes on, you hear your professors and classmates describe your disabilities as tragedies that one should try to overcome. With enough of a growth mindset and hard work, they say, disabled kids can become indistinguishable from their peers on behavioral measures and standardized tests. To them, the relationship between academic difficulties and later mental health issues is a sign that children with academic difficulties should be instructed and reinforced until they blend in, rather than a sign that our school system teaches disabled children that they are worthless the way they are.
You consider now how your professors might view an accommodation request. Would it, to them, be an indication of a failure on your part? Of someone who just didn’t try hard enough to “overcome”?
Seemingly easy assignments soon become a battlefield in your mind as you attempt to balance a demonstration that you have learned what has been taught with the desire to push back and stand up for your disabled identity. You can’t help but notice that, on things like “reaction papers”, the more you disagree with your professor’s conclusions, the lower your grade seems to be, with feedback like, “I’m concerned you don’t understand”. Your face grows hot as you read yet another prompt with the professor’s opinion (and expected answer) embedded within the question; “why are social skills interventions important?”. In response, you want to cite the countless adult advocates who describe their experiences of “social skills interventions” as painful and dehumanizing and critique the research for failing to investigate the impact of these “interventions” on things like self-esteem, mental health, and feelings of safety and belonging, and for only measuring things like appropriate eye contact and compliance, as if these are adequate proxies for feeling understood and connected. But you don’t have time to gather all of the evidence, and you doubt you would be able to convince your professor anyway. At the same time, you can’t bring yourself to answer as though you do think social skills interventions are important. Eventually, you decide to begin with something like, “the lecture states that social skills interventions are important because…”, but it still makes you sick to your stomach.
As you grapple with school, you also have a life. You are still trying to work 20 hours a week, partially for the money coming in, but mostly because you and your wife both get health insurance through your job. Never-ending doctor’s appointments (required by insurance to continuing covering your needed medications) and calls between billing and insurance take up the rest of your time. As you finally make it to finals week of your first quarter, your dog gets really sick. Then, your wife breaks her leg and can’t get into your apartment. You realize you have to move. Now. The two weeks between quarters aren’t enough. Neither is the one week between the second and third quarter.
Maybe you shouldn’t have been surprised when, a week into the third quarter, you experience a significant health issue. For two weeks you can’t do anything but lie in bed and let your family shuffle you to doctors’ appointments. Your doctor advises you to take medical leave from work, and you agree.
You reach out to your advisor to discuss options for school. She assures you everything will be ok. Your classes aren’t offered in the summer, but your professors will work with you to come up with an extended timeline so that you can finish classes into the summer. “Your health is most important,” she says.
But when you talk to your other professors, they disagree. They don’t get paid over the summer and aren’t willing to extend the timeline for you. One suggests a leave of absence, which might be a good idea, but your advisor tells you that, due to the structure of the program, you would have to take a full year off. Apparently, every course each quarter needs to be completed before you can take the classes for the next quarter. Withdrawing from even one class would set you back one full year, “given that the classes are offered annually and in sequence”. Your advisor later informs you that she doesn’t “think any of your classes are really set up for individual/independent study, and every instructor will have a limit to their ability to identify unique ways for you to complete the work outside the scope of the course and established syllabus”. She offers to connect you with someone from the Office of Student Services, because, she says, “I feel like you may need more advocacy than I can offer”.
The person from the Office of Student Services is nice, and she is helpful. She talks to all five of your professors and negotiates a plan. You breathe a sigh of relief—maybe you will actually be able to focus on schoolwork now, instead of spending your time emailing professors and trying to figure out how you will pull this off. You’re in so much pain, and you are tired, and you continue to have two or more doctors’ appointments a week, but you start to think you might be able to do this. You talk with the person from the Office of Student Services one last time. She suggests you register with disability services, for next quarter. Before she hangs up, she tells you that some professors have expressed concerns about your communication. “You need to express more gratitude,” she says, “they are going above and beyond for you.” You thank her for her advice, but when you hang up, you scream.
Step 4: Figure out what the first step is (again)
In the midst of trying to balance rest, medical appointments, pain, fatigue, schoolwork, and correctly expressing gratitude to your professors, you need to register with disability services. They are the only ones who can hold professors legally accountable to any accommodations you might need. You head back to their website, this time with your wife by your side, helping you. She fills out the personal information section. “Ok” your wife says, “it wants to know what your disability is and how it affects you at school.” You groan. “Wait,” she says, “should we just put this most recent health thing? Or your other disabilities too?” She scrolls down the form. “This is complicated,” she says. You decide to do the current health issue, for now.
It takes about an hour to complete the first page of the form. The next page asks for you to submit documentation. The page has links to documentation guidelines based on disability. Is it a learning disability, psychological disability, ADHD, health concern, or traumatic brain injury? The requirements are different for each. “What if you have all of those disabilities?” you ask your wife rhetorically.
Step 5: Get the correct documentation
You are grateful to have a doctor’s appointment scheduled in the next couple of days already, so you don’t have to schedule another one. You come armed with the documentation requirements for accommodations. “What accommodations do you want?” your doctor asks. You tell her some of the accommodations you received in undergrad. “What were those for? This is for your current, temporary condition, correct?” You say that it is, but you would also benefit from other accommodations also. “We have to do a separate letter for each diagnosis, and they might not accept a letter from me for your other disabilities, so let’s focus on what we can do for the current condition”. You agree, and she suggests some accommodations other people with your temporary medical issue have received. At least it’s better than nothing.
After submitting the documentation, you get an email stating that, “if your documentation meets our guidelines our front desk will contact you to schedule an appointment”. The website says it can take up to six weeks to hear back, so you don’t hold your breath.
Step 6: Wait until they contact you
A couple of weeks later and it’s the last week of classes for the quarter. You get an email stating you need to set up a planning meeting with disability services to establish accommodations. You get two phone calls from them that day, too. They are persistent. After your last class of the day, you call and set up an appointment for the next week.
The meeting with disability services is a blur. You are told you have been approved for accommodations for 1 year, based on your current health issue. They suggest some accommodations you hadn’t thought of, and you are grateful for that. You bring up that the most important accommodation you will need is attendance flexibility. Sometimes you are in so much pain you won’t be able to make it to class in person. “We have to be careful with that one,” the coordinator says. “It can look like you are taking advantage, and in some classes, participation is just really important, so we can’t make it work.” “I need it,” you reply. “Ok,” she says, “but you will need to talk to each professor about whether or not they can make it work, and you’ll have sign another form with each of them saying you understand the rules.” Fine.
After the appointment, the coordinator sends you an email with seven attachments with instructions for next steps, including more paperwork, and lets you know that you need to make two more appointments for “orientations” for a few of your accommodations. You mark them as important and get back to finals.
Step 7: Talk to your professor
On the last day of classes, your professor announces to the class that next year is going to be significantly more difficult than this year was. You freeze. You couldn’t even make it through this year, how will you make it next year if it’s even harder? You stay after class to ask more questions. She tells you it will be 80 or more hours a week of work that is very intense and very time sensitive. You wonder to yourself, “What does working 80 hours a week have to do with this profession? What point could it have other than making sure no one disabled can make it through?” To her, you say you won’t be able to do it and ask if there is anything you can do over the summer to get a head start. She tells you, “No”. Everything needs to be taught and in a certain order. If you try to learn anything over the summer, you’ll learn it incorrectly and will have to unlearn it. In addition to the workload, she tells you the professors will be “harsh” next year with their feedback. The only thing she can think of to prepare you for the fall is to practice accepting negative feedback.
Step 8: Every accommodation, Every quarter, for Every class
During your meeting with the disability services coordinator, you are told that you will need to officially request accommodations, through the portal, eight weeks before the start of classes to ensure that everything will be ready to go for the first day of class. The official deadline is six weeks before the quarter, but it may take more time for yours.
The date comes soon after the three-month mark of your most recent illness. Your doctor had told you that most people fully recover in around three months, but you haven’t. You meet with your doctor, who is concerned with your progress. “You need to make sure you are resting and taking care of yourself,” she says. You nod, but you still have schoolwork to do, and your medical leave from work is up. You rest as much as you can.
When it’s two months before the start of fall quarter, you get up the energy to log in to the disability services portal. You find the email from the disability services coordinator with instructions. You have some forms to sign about your “rights and responsibilities”. The email contains a spiffy saying: “Students will request Every accommodation, Every quarter, for Every class”. This means, more than six weeks prior to the start of each quarter, students who are legally entitled to accommodations must select each accommodation they would like to request, for each class. “How am I supposed to know what I’ll need when I haven’t even gotten the syllabus yet?”, you think. You decide to select all of them, for all of your classes. You are informed that “some accommodations will require DRS and faculty consultation” and that your professors will receive letters stating your requested accommodations. You’ll also need to contact each of your professors to meet and discuss how accommodations can be implemented in each class.
Step 9: Request Additional Services
A few weeks later, you get an email from disability services saying that the next day is the deadline to request accommodations for fall quarter. You panic. What else might you need? You log on to the portal and click to add additional accommodations. It asks what accommodations you want to add, and why they are necessary for your disability. You spend an hour defending why three additional accommodations would be helpful. You click submit and breathe a sigh of relief. You’ve done everything you can. A notification pops up indicating you’ve received an email confirming the additional request. “It is recommended that you also contact your counselor directly to discuss your request,” the email says.
Step 10: Cry
A month before the start of fall quarter, you quit your job. You had been trying to scale back up to 20 hours a week, but you are still sick, and with school and medical appointments, it wasn’t happening. Without your job, you and your wife are going to lose your health insurance in 12 days. You look on the state healthcare finder and plug in how much your wife makes in a month, how many times you visit the doctor in a year, and how many prescriptions you take. The plans come up. According to the website, with the most cost-effective plan available, you will be spending about as much as your previous salary on medical costs each month. You cry and tell your wife that maybe you can work after all. “No”, she says, “it was killing you.”
The good news is you have a safety net. You are White and cisgender and your parents have money. You won’t lose everything because you got sick and lost your job. You sit in the knowledge that most people in your situation do lose everything, that lawmakers and even your neighbors think that, in exchange for being sick and disabled, you deserve to lose everything. They must believe, like your professors seem to, that health is earned through hard work and personal choice—a simple mix of “optimistic thinking”, a “healthy, balanced diet”, and “perseverance”. To be sick or disabled means you just didn’t try hard enough, so you deserve to be sick, to be bankrupt, or even to be dead. You know they cling to this belief because the reality that it could happen to them at any time is too much to bear; that to wake up and be like you would be so horrific they have to believe you did it to yourself. Knowing this, you fight back by believing that you are important, and that you matter, just by being who you are.
You think about setting up meetings with each professor, of having to prove to them that you are disabled enough to need these accommodations but not so disabled you can’t do the program. You will need to convince them to approve your requests. They can, after all of this, say no. They can argue that any accommodation would “fundamentally alter the program”. You wonder if it’s worth it.
As the quarter draws nearer, your adviser emails you to check in. She reminds you that your choices are either, “proceeding with a full load or taking a one-year leave”, and that the second year of the program is “taxing for most students even when there aren’t limitations”. Half of you wants to fight—to push for accommodations, to challenge the ableist mindset of the program, and to prove that disability has something to offer. But the other half knows that you need time to rest and to gather your strength for the fight ahead.
As you submit the $25 required to secure your place in the program during your year off, it occurs to you that the accommodations you had been approved for will now expire before you go back to school. They had been approved for your temporary medical condition, and only for a year. You consider the steps and time you will need to put in to get new accommodations: Filling out a new application (1 hour), deciding which disability (or disabilities) to register with in order to get all of the accommodations you need (5 hours), scheduling an appointment with the appropriate specialist in order to get the correct documentation (1 hour, plus a 3 month wait), attending the doctor’s appointment (3 hours), following up with the doctor to ensure the paperwork is completed correctly and makes it to disability services (4 hours), waiting for disability services to reach out to schedule an appointment (6 weeks), following up with disability services to make an appointment (30 minutes), attending a meeting with disability services (1 hour), scheduling the 2 or more orientations for disability services (1 hour), attending the orientations for disability services (3 hours), completing all of the required paperwork for disability services (1 hour), requesting accommodations via the online portal 8 weeks before the start of classes (1 hour), brainstorming accommodations that might be helpful and that your professors might go along with, and then requesting those additional accommodations (5 hours), emailing all of your professors about your accommodations and the need to set up a meeting (2 hours), scheduling a meeting with each of your professors during the start of the quarter (5 hours), meeting with your professors, some of whom you’ve never met before, about your accommodations (5 hours), making sure the appropriate paperwork is filled out at these meetings and gets back to disability services (5 hours), and, finally, figuring out how to actually use the accommodations you’ve been approved for (1 to 10 hours).
As you contemplate the roughly 50 or more hours you’ll need to put in to get accommodations, you wonder if it’s worth it.
You probably won’t need accommodations anyway, right?
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