My sister and I both lived on campus for our college careers. We went to two very different schools and therefore had two very different experiences. Connie went to a big state university with thousands of students and lived on a huge campus in the middle of a bustling city. I attended classes at a small bible college, tucked away by a quiet pond in a sleepy town. However, our experiences with peers and caregiving were not all that different.
Both of our moves to live independently were great leaps of faith for our parents and ourselves—Connie and I have spent most of our lives in wheelchairs with a neuromuscular disease called spinal muscular atrophy. This means we require a great deal of care and attention for our physical needs. While we’d had friends who pitched in here and there over the years, the job primarily belonged to our parents. That was the case, anyway, until we moved away for college; then it became a team effort between our peers and ourselves to make our everyday lives possible.
How we found peers who could help with caregiving
A key for each of us in our transition to independent living was to start with a friend we already knew. For Connie, it was her best friend since fifth grade. For me, it was a buddy I’d met through the local music scene. We lived with these friends to create a kind of baseline for caregiving and just to have a trusted friend around to hang out with in the new environment. From there, and in the short-order fashion of college life, other friends came into the picture, both for moral support (as we all need) and caregiving (which is helpful, too).
Caregiving in inter-abled friendships is a two-way street
Friendships can be messy. You are inviting someone else, whom you really have no control over, to join as a character in your life story. In return, you’re expected to join in as a contributor to theirs. Add disabilities and caregiving into the mix, and the mess can get messier.
First, let me say that everything I suggest here is a responsibility for both of you, whether you’re the person with the disability or the able-bodied friend—it’s a two-way street. Just like any other friendship, inter-abled friendships require work from all parties.
Caregiving dynamics can be tricky. As an able-bodied person, you want to be a friend first, not just a caregiver, but the line can be a bit blurry because what compels you to help in the first place is your friendship. How do you balance those roles? When you made this new friend with a physical disability, you may not have known that you could be asked to help them in the restroom a week later!
And the receiver of care is just as responsible as the caregiver for managing dynamics in the experience and considering the well-being of the other person. I may require help with everything in the morning journey from bed to toilet to bath to wheelchair—a marionette being flopped around to each station. But in that process, I have the unique opportunity to sense my caregiver’s disposition, due to our proximity and the intimate nature of our interaction, and moreover I have the responsibility to respond accordingly. In the end, who is caregiving but both of us to one another?
Finding balance in inter-abled friendships
Finding that balance of friendship and caregiving has proven to be one of the most difficult dances I’ve had to manage in my adult life. It’s different for every friend, and some have a greater capacity to be part of the conversation than others. What I have found most beneficial to this challenge is when we each, at times, initiate interactions unrelated to caregiving. For example, last week I invited my friend, Isaiah, over to watch a movie. This was a way to hang out and have fun that was separate from him coming over to get me out of bed the next morning. I regularly make it a point to have impromptu hangouts that don’t involve caregiving—such as meeting up at a coffee shop or grabbing last-minute takeout. If it’s not an activity, it might just be a conversation unrelated to caregiving.
Some level of caregiving will inevitably come up in an inter-abled friendship. However, there are other things that can take center stage, and sometimes, to bring balance to the relationship, that’s necessary. Your friend may be the one to take the lead on this, but you need to be ready to do so as well. We are talking about interpersonal dynamics, so keep in mind the fluidity of relationships. They’re not cut-and-dried or scripted but rather always growing and evolving.
Setting boundaries in a caregiving relationship
Some of my greatest friendships are with friends who’ve set boundaries and been understanding with me around caregiving. So much of this comes down to clear communication.
One night in college, I called my friend Eran to invite him over for pizza and video games. He’d had a long week at work, so he shrugged off the invitation, and I acted like it was fine. He and I got together for those kinds of nights all the time, so it didn’t cross his mind that I might be asking for a deeper reason. After I hung up, I called him back almost immediately and explained that I was actually going to be alone for the evening, unexpectedly, and really just needed someone around to help me out. Eran had healthy boundaries to say “no” when he thought the hangout was just for fun. Because we had a healthy relationship, I could call him back and honestly state my needs. On realizing that I had a need, he was happy to come help out for a bit, and we had an awesome time.
“If your school offers help, do not be afraid to take it. My first semester was harder than it should have been because I did not ask for the help that I needed. Now that I have it, it has been a little easier to go with the flow of my classes.”
—Alejandra T., second-year student, College of the Desert, Palm Desert, California
“Allow yourself to have different needs than many of your classmates. Sometimes you may feel that you need to try and be like everyone else, but you’re not, and that’s OK! That’s good, even! Advocate for yourself. Don’t let judgements that are made because you [do things differently] get you down. Other people’s attitudes are their problem, not yours. Talk to your professors and find support. Access whatever accommodations, supports, and accessibility services are available. Counseling services on campus can be a massive mental and emotional health support as well. Take care of you before you take care of school.”
—Ella P., second-year graduate student, Mount Saint Vincent University, Halifax, Nova Scotia
“During the middle of my fall semester last year I suffered a stroke and went from being completely independent with no disabilities to all of a sudden needing help with everything. I had to learn pretty much everything all over again—how to walk, talk, speak—I couldn’t even do basic self care like going to the bathroom or bathing by myself. I was about to drop all my classes because it was just too difficult for me to do it all on my own when one of my friends told me about Disability Services and what they offer. Disability Services helped me through everything while I was doing my stroke rehabilitation, even making sure I received the appropriate accommodations from my instructors, especially when one instructor refused because they weren’t told about my accommodation the first week of class (how could I if the stroke didn’t occur until the semester was two-thirds of the way through?). If students don’t know where or who to ask about Disability Services, don’t be afraid to ask faculty. It’s been my experience that they are more than happy to help connect you with the right person because they really do want all students to succeed.”
—Jennifer M., second-year undergraduate, San Joaquin Delta College, Stockton, California
“Try to become comfortable (as much as you can) with discussing your disability with certain people on campus with whom you either work frequently (under/graduate advisor, thesis/dissertation director, research director, immediate supervisor, RA, professor, counselor, etc.) and/or whom you trust as an informal mentor. Explain, in however much detail you’re comfortable with, what your disability means for you and your role as a student, especially if you 1) anticipate having to take more than the permitted number of sick days, 2) will need to miss assignments or deadlines due to doctor or other related appointments, 3) will require accommodations of any kind, or 4) just need someone to talk to. It took me a long time to disclose my various disabilities to my dissertation director, but the second I did, she was immediately receptive, understanding, and compassionate, and she continues to be whenever my disability impedes my ability to complete my work or otherwise perform at my best. Granted, not all the people you work with on campus will respond like this; if you attempt to discuss your disability with a certain person and you’re met with anything that makes you feel discomfort, anxiety, shame, etc., do what you can to remove yourself from that conversation and then figure out who else you could confide in about your disability. I promise that talking about the struggles (and accomplishments) you experience regarding your disability will help your situation feel less isolating or otherwise unhappy and uncomfortable.”
—Amy N., graduate student, St. Louis University, Missouri
“Ask for help from disability services when needed, and keep your professors notified of any accommodations that you need.”
—Brian J., fourth-year undergraduate, Grandview University, Des Moines, Iowa
To folks with disabilities requiring care: Peer-to-peer caregiving is an adventure
Remember that, able-bodied or not, these are your peers. Those willing to help are wonderful, but they’re not hired, nor are they at your beck and call. Try to care for their well-being as they care for yours. Understand that there will be times when they can help you and times when they can’t. Some people may not be willing or able to help with your physical needs, but they can still be your friends. It doesn’t mean they don’t care about you. Friendships have varying degrees and some don’t include physical caregiving—and that’s OK.
Peer-to-peer caregiving is an adventure—it has ups and downs, and a lot more falls on your shoulders as the recipient than you might expect. But the result, when done well, is a rich and beautiful experience.
To potential friends/caregivers: Everything is new once, and then it’s not
The funny thing about caregiving is that everything is new until you’ve done it once. And then you do it again and again until you stop one day and say to yourself, “I used to be uncomfortable with this, and now it’s no big deal.” If you are ever asked to take part in caregiving, hold your reservations loosely. What bothers or intimidates you today may not tomorrow. See it as an enriching experience you get to have with a friend.
If you are a person with a disability in need of caregiving assistance or an able-bodied person who wants to help, please reach out to We Carry Kevan for more information at [email protected].
Kevan Chandler, personal narrative
CampusWell survey, October 2020