Accessibility In Higher Education Needs to Go Beyond An Accommodations Statement

At my university, most Professors (although not all) have an accessibility statement in their syllabus. It usually outlines the process for getting accommodations in their class- getting them approved by the disability office and then discussing them with the professor early in the semester. I appreciate this statement because it tells students with disabilities the exact steps they need to take.

However, this statement does not go far enough. I, like many other students with disabilities I have spoken with, am worried about using my accommodations. I’m worried about discussing them with my professors because of fear of stigmatization. As a graduate student, my relationships with professors will be very important in my career, and I don’t want them to think that I’m less capable because of my disability.

This semester, I am taking a course where each week is taught by a different professor, so each professor gives and grades assignments. This means that to get accommodations in this class, I will need to tell all of the professors about my accommodations. And honestly, I’m terrified to do it. This is the first time I’ll be meeting most of the professors in my department, and I don’t want them to think less of me. Most of the conversations about accommodations I’ve had in the past were positive, but some were not. Throughout my five years in academia, I’ve had many professors suggest that I should not be in their class and that I might not be able to handle this career choice, because of my illness. 

Professors don’t understand that these accommodations don’t make me less capable of pursing this career. The symptoms that affect my ability to succeed in the classroom might have no effect on my performance at work. Beyond that, symptoms and treatments can change, so it’s possible in a few years after I graduate I will have different physical abilities than I currently do.

Luckily, many professors do understand these things and are supportive of students with disabilities. But in higher education, disabilities are not talked about. I have no way of knowing which professors will support me, and which professors will fight against the accommodations I’m requesting.

I should not have to worry that asking for accommodations will affect my standing in the classroom or within the department. I should not have to fear criticism from professors. I should not have to fight for accommodations the school has already approved. I should not have to wonder if the professors I’ve worked alongside for three months (and not told them) will look at me differently.

Professors need to step up. There needs to be more education for professors about disability accommodations. They need to be trained how to best support students, and they need to be taught that disabilities do not determine a student’s identity. They need to talk about accommodations at the beginning of the class, and be clear that they will support any university-approved accommodations.

Students with disabilities already bear a lot of the cost of dealing with this ableism- the accommodations process is often very complex and requires a lot of work from the student. However, I think that as much as we are able to, we need to continue to fight the ableism we see in academia. We need to advocate for our accommodations when professors doubt us. We need to be honest about our disabilities and how they affect our schoolwork. And if professors don’t listen, we need to hold them accountable and turn to the disability office or other people for support.

As we return to in-person school, I hope that we can make accessibility and ableism a part of the conversation. I hope that students with disabilities can feel both welcomed and supported in their environments, and I hope that all students and Professors will work to make that happen.

Returning to campus

To the Doctor Who Helped Me Learn to Live With Chronic Pain

 Dear Doctor,

I still remember the first day we met. I was looking forward to the meeting, finally getting to see a “Pain Medicine Doctor”. I went into that meeting so optimistic: I hoped that you would finally have the answers I had been waiting for. A way to stop living in constant pain. A way to get back to living the life pain took away from me.

And to your credit, you did have some answers. No clear ‘magic bullet’, but you did suggest other tests I should have done, medications we could try, and other specialists who might be able to help. Most importantly, you assured me that you would help me, that you believed in my pain and you would work with me to make it better.

But I was also very disappointed. I had hoped that you would be able to take away the pain, but you made it clear that wasn’t possible. Over two years later, I still remember only one thing you told me. You had asked what I was doing before I got sick, and I explained how I had loved hiking with friends and farming. You told me “If two years from now you want to be hiking, you need to learn to hike with pain. I won’t be able to take away the pain, but I can help make it more manageable and I can teach you how to hike anyway.”

I love hiking

Today, two years later, I am infinitely grateful for what you told me. First of all, it showed that you believed me. After being told so frequently that the pain was “all in my head”, this was a huge relief. It also showed that you understood the effect the pain was having on my life. Unlike some other doctors, you didn’t tell me that I should just “start running again” or pretend the pain wasn’t there. You didn’t blame me, and you didn’t make me feel like I was too weak to handle the pain.

Instead, you gave me hope. It took me a while to see it, because it wasn’t the hope that I was expecting. I had assumed a pain medicine doctor would get rid of pain, which you didn’t. But you did give me hope that I would be able to get my life back. You were honest, and didn’t pretend it would be easy, but you made it sound possible. At a time when I couldn’t see any future for myself, you showed me that one was still possible.

Not only did you give me hope, but you told me that you would help me get there. You told me that you would help me learn to manage the pain. You made living with pain a skill that could be learned, instead of an inherent trait that I thought I was too weak to handle. You made me believe that my life could get better. And unlike the many doctors before you who had been eager to pass me off, you assured me that you would help me along the way.

I’m writing this letter two years ago after an incredible weekend of hiking. During a 20 mile hike, I remembered what you had told me. And I realized that I am living a life I wouldn’t have believed is possible: working a job I love, in graduate school, and I get to go hiking. There are days when it is unbelievably challenging and when I am overwhelmed by the pain. But even with the pain, there are days when I am able to go hiking and do the things I love. And for that, I am infinitely grateful.

From my hike last weekend

Thank you for everything you did to help me. Most of all, thank you for believing in me when I couldn’t. Thank you for reminding me that hope can take many forms, and for helping me build a life I love.

A Letter To Myself When I Have To Cancel Plans Because of Chronic Illness

Dear Annie,

 I know you debated for half an hour over how to phrase the text, but essentially the message was “I’m sorry, I won’t be able to come today because I’m sick.” It’s not a new message, because this isn’t a new occurrence. Yes, it felt different because it was a new friend. It felt scarier — you’ve never told them about your chronic illness, so they have no context to understand why you had to cancel the plans that seemed fine yesterday. 

 It’s hard because it feels like your fault. After all, you’re the one who told your friend that you couldn’t do it. But it’s not your fault. Being sick is not your fault, and the symptoms that come with it are not your fault. This is not something you signed up for, or something you ever would have chosen. 

 I know that it feels like you’re letting people down. I’m sure your friends are sad, because like you, they were probably looking forward to today. And it never feels good to be the one to take away that opportunity. But it isn’t you who decided not to go, it’s your illness. There was no way you could physically go, and you did the responsible thing by letting your friends know that as soon as you could. 

Writing this letter

It’s okay to feel sad because of what you know you’ll miss out on. I know it’s so easy to imagine your friends having fun without you while you’re homesick. And I know you were really hoping today would be different. But you will have another chance. 

 I know it feels like you canceled because you aren’t strong enough to push through it and go anyway. But canceling on them is not a weakness. You push yourself all the time to do things that you need to do even when it feels like too much. It’s never easy to say no, but you need to let your body rest. It definitely doesn’t feel like it right now, but you are doing what you need to do. And hopefully, good friends will support you as you prioritize your health. 

 I know it’s hard, but try to let this go. Take today to rest, and do what you need to do in order to take care of yourself. Hopefully, you will feel better soon and be able to spend more time with your friends.

A Letter to my Past Self In Chronic Pain

Dear Annie, 

           I believe you. I see you. I see that you are in pain that nobody can understand, that nobody can even imagine. I know that you’re scared. And doubting yourself constantly. But please, please know that there will be a day when you will be better. A day when you will feel physically okay and you will love the life you have created.     

            It can be so terrifying. You never know what will make it worse. Or you do know things that make it worse but you need to keep doing them. Realize that this is a terrifying thing, and it is completely reasonable to be terrified. Most people avoid pain, and never have to experience it this often. You are so so strong. You are strong enough even when you are terrified.

Chronic pain can be extremely isolating. It’s so hard when nobody believes you. When nobody understands because you “look fine” or “you did it last time”. People will always doubt you. People will judge you, people will doubt you, and they will treat you differently. Sometimes even people you trust or expected to help you. But that doesn’t make it untrue. It doesn’t mean that you’re not facing something extremely difficult they can’t understand. Don’t let other people’s doubts make you doubt yourself. You know yourself better than anyone ever can.

           As Mary Anne Radmacher says, “Sometimes courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the night saying I’ll try again tomorrow.” You are fighting something very difficult. Regardless of whether or not other people understand that, it’s true.

Sunrise over the ocean

 

            There will be times when you feel like you can’t keep going. When you feel like it isn’t worth it. There will be times when a doctor will tell you to come back in three months but you won’t be able to imagine an hour, let alone a day or months in that much pain. There will be times when you will want to sleep forever because it’s the only way to escape the pain. And yet there will be nights you never sleep because of the pain.

            But when it gets hard, remember it will get better. It will get better in ways you never imagined. You will get better at managing your pain, or you will be lucky enough to find treatments that make it go away. It will take time, but it will be so worth it. You will still have hard days, but you will also have incredible days. You will rediscover dreams that feel so foreign right now. And you will work until they come true. Because you will be strong. You are so strong. No matter what it feels like. If you need help today, reach out to someone who can help you. And remember that you are so so strong and you can do this.