How Disability and Self-Care Intersect

Self-care is the idea that you need to prioritize your health and not feel selfish to do so. Particular emphasis on mental health is significant to avoid excess stress and burnout. Physical self-care involves taking rest breaks, getting enough sleep, and keeping properly hydrated and nourished. I like to add one more aspect to the list: your physical surroundings-- making sure the spaces where you work and live support your mental and physical health are important as well.

It's no secret that we live in a very fast-paced society. The reality of toxic productivity can make prioritizing self-care something you feel guilty about. To help ease this feeling, we often use the analogy of flying in an airplane, if you were to lose altitude and the oxygen masks were to come down from the ceiling. The instructions are to put your mask on first before you help your companion because if you don't, you won't be able to help them with theirs.

But when I think about the nexus of self-care and disability, there is a little bit of added dimension. First of all, I think disabled people or people who live with chronic conditions know how to practice self-care on some level purely out of necessity. Building routines to ease pain, allowing extra time to accomplish a daily living task, and recognizing the signs of burnout far earlier than a non-disabled person might are examples of how every day is a self-care day for some folks. And this isn't out of indulgence. This is out of necessity.

A different challenge with practicing self-care when you are disabled or chronically ill is explaining your limitations to your friends and family, especially if your abilities have declined over time. For many years, I never wanted my disability to hinder or hamper my ability to do things. Rightly or wrongly, my parents raised me to be as independent as possible. And when I got old enough that they couldn't control my every decision, unfortunately for them, sometimes stubbornly independent.

It set up a situation where my family and friends weren't used to hearing me say "no," or "I can't," or "I don't want to." That was a challenging journey for me to navigate also. Acknowledging my limitations and setting non-negotiable boundaries was uncomfortable at first. I had to find the words to convey my need while not diminishing my sense of self-worth. And also not sounding "high maintenance."

I remember one of the first times I had this kind of conversation with my dad. I had just gotten my driver's license and was prescribed an accessible parking placard. My parents had never thought to get a placard for me prior, even though I would have benefited from having one. We were going to the supermarket, and as he usually did, he looked for a parking spot far away from the store. I gingerly pulled out the placard from my purse and said, "Here, dad, I have my hang-tag. We can park closer."

Now, to be honest, I don't exactly know what he was thinking at that moment. He may have been coming up against his own ableist prejudices and not wanting other people to believe he was disabled, or he might have just thought using the hang-tag was plain lazy. As a result of my small stature, he used to carry me around well beyond my toddler years, so there is a slight chance he thought he could just carry me into the store. But at the age of 16, I think even he knew that was a non-starter of an option.

Despite whatever he may have been thinking, he did circle the lot and come back around to one of the accessible parking spots. He didn't say anything to me. He just took the hang-tag from my hand and hung it on the mirror as he entered the spot.

Part of what made this conversation hard was that my dad had a certain expectation for me to be the way he always knew me to be. At that moment, I wasn't expressing that I wanted to be less independent. Instead, I was just more comfortable utilizing the tools of access available to me as a disabled person.

And so the next time we went somewhere, it was a little easier. I got more confident in advocating for myself with what I needed. And I feel like he became more aware that things were changing. I hope he knew for the better.

This story about me and my dad is just one of many I could share, which are an example of what can happen when disabled people get put in a box. We have expectations and assumptions placed upon us that we have to work to overcome, in addition to all the other ableist barriers we face daily.

Several years ago, I made a significant shift in my life. I raised my level of awareness about my mental and physical health and gave myself permission to practice unapologetic self-care when needed. This was different than simply acknowledging and accepting the limitations of my disability, which I had done prior. I started to write my own rules of engagement, if you will. I let go of any external expectations. It's not an easy path at times. Saying "no" when I wish I could say "yes." Leaving that sink full of dishes until tomorrow when I'd really love to wake up to a clean kitchen. Seeing how festive my neighbor has their house decorated and wanting the same for mine. But at the end of the day, I accept that prioritizing self-care in my life-- for my life-- every day will bring a new negotiation.

Now I'm at a point in my life where I feel empowered when I say no, because when I say no, I really mean it. It's for a reason. My intention is more assertive, and I am more confident. It's nothing that I need to feel embarrassed, ashamed, or less worthy. And therefore, I think there is more understanding and respect on the other end of the conversation.

"SPOON" THEORY

There's been somewhat of an identity or culture generated around how to communicate your ability as a disabled or chronically ill person. It's called Spoon Theory, with individuals calling themselves Spoonies. The story goes that one day, a woman with an invisible disability was explaining to a friend of hers who was not disabled, that she only has a certain amount of energy to do things throughout her day. Her friend wasn't understanding why she couldn't do as much as she did, why she was always tired, or not "keeping up." This conversation was unfolding during a meal at a restaurant. In desperation to make her point and explain how her energy reserves depleted throughout the day, the disabled woman gathered up a set of spoons.

She proceeded to list off activities of daily life that most non-disabled people take for granted. Routine things like getting dressed, tidying up the house, doing laundry, going shopping, etc. With each activity, she put down a spoon and said, "Each one of these spoons represents one of these tasks. And when I'm out of spoons, I'm out of energy."

I have no issues identifying as a Spoonie, but I prefer a gas tank analogy just the same. Full tank, half a tank, and quarter tank benchmarks correlate with how tired or fatigued I feel. There are some days or nights when I just tell my husband I'm simply surviving on E.

I would hope that anyone reading this who is not disabled will think beyond what they see or assume of another person's effort or ability. Yes, of course, family members should be more intimately aware of a loved one's health and needs, but what about a co-worker, the person bagging your groceries, or the fellow passenger you shared a ride with on public transit?

I choose to believe that everyone is doing the best that they can. It makes it easier to find breathing space in accepting each other without judgment or conditions. The more grace and gratitude we extend to each other, the easier it is to care for each other and ourselves.