My life is never going to be “normal.” I’ve known this for a while. Writing that statement isn’t hard, but accepting everything implicated in it is a lot more complicated. I never really wanted a “normal” life (whatever that even means). I grew up in an alternative, intentional, heart-following family, and always imagined myself following my gut through life, working hard towards meaningful, but probably unconventional, dreams that existed outside of a nine to five job with a clear career path. However, to a certain extent “normal” was always an option, until I was diagnosed with debilitating chronic illnesses. Now it isn’t. My old normal isn’t an option, other people’s ideas of normal aren’t an option, and my dreams the way I’d imagined them aren’t an option. On the most basic level I’ve accepted this. But I am also learning that acceptance is not a one-time thing, nor is my own acceptance of my limitations the only acceptance that impacts me.
I come from a culture that doesn’t do grief well: a long line of white midwesterners dating back to the puritans and more recent Scandinavian immigrants who power through hardship and often suffer in silence no matter how heavy the pain is. In my cultural heritage there’s a rush to be in the acceptance phase of grief, without all of the mess and vulnerability of denial, anger, and depression. There is an implied belief that acceptance is a choice, and the sooner you can make it, the sooner you can move on with your life. However, actual emotions, especially the emotions we typically feel following an irreversible and painful event like death, trauma, or becoming disabled, don’t just go away when we decide we’re done with them. Even when we’ve accepted the base reality of our situation, grief still returns in various forms as we continue our lives. Grief doesn’t exist in a vacuum.
There are aspects of my disability that are so familiar and ingrained in my everyday life that most days I can accept those limitations without thinking about it. But new experiences bring new understandings of my limitations, and a new sense of loss. Sometimes these losses are small, but they are still a reminder that I live with a small undercurrent of grief throughout my life. I attend my first standing-room only concert since losing the ability to stand for more than half an hour at a time and the accessible seating doesn’t allow my a view of the performers, the crowds and noise levels are overstimulating, and I spent the next day or two recovering in bed. So, I realize concerts are another thing I can’t enjoy anymore. I babysit small children for the first time and realize it’s difficult to care for them and keep them safe, despite my lifelong love of children and history of experience caring for them. I realize I am too worn out by three hours of babysitting to undertake it often. I try to clean my own apartment for the first time and end up on the floor crying because I am too tired and pained to finish and I wanted to be able to do this for myself. I am only 25; there are hundreds more “firsts” I will experience, and many of them will come with some amount of grief as my limitations are tested and highlighted. My grieving isn’t over just because I’ve accepted that I will always be disabled. Maybe it will get easier with time, but it is part of my new normal.
The process for me to learn to live with my grief and disability and to accept those things as my long-term reality is difficult on its own, but just as my grief doesn’t exist in a vacuum, neither does my disabled self. Individual and cultural beliefs about disability impact my reality as well–not only because it’s a lot of work to accept my reality when the majority of cultural narratives in my country dictate that to do so is the same as “giving up,” but because the lack of acceptance for my disability negatively impacts me and other disabled people in tangible ways. Disabled people face more social isolation that our able-bodied peers, often leading to chronic feelings of loneliness that can cause mental and physical health problems over time. This isolation is often caused by lack of accessibility in social settings, and stigmatizing views of people with disabilities that cause able-bodied people to avoid close contact and relationships with them. People can’t tell that I am disabled just by looking at me, so I do have a sort of abled-passing privilege in many social settings. However, accessibility concerns limit my ability to engage in social activities. Before going to a party I have to take into consideration whether I will be able to sit, whether people will still talk to me if I am sitting down (I’ve found that often in majority-standing parties, sitting is a barrier to meeting new people), whether there will be food I can eat, whether the inevitable over-stimulation and post-party crash will be worth the social payoff, and whether I can get there safely and affordably. If I want to go to a workshop that I am interested in, I have to take into consideration whether it’s during a time of day that I can be awake and functional, how long it runs, whether I can eat and drink during undesignated times, and how I will get there. I get invited to interesting workshops on a fairly regular basis, but even those with a focus on inclusion often run for 6-8 hours at a time (far longer than I can sit in a straight-backed chair), and start in the morning when I am often nauseous and exhausted. I almost never attend. No one means to be exclusive in these situations, or when they eventually stop inviting me to things because I’ve had to decline so many times, or when they assume I won’t fit in certain groups or activities. But there’s an underlying and probably unconscious cultural belief that disabled people don’t have social contributions to make and don’t have the same social needs that anyone else does.
Recognizing that these social and institutional barriers are often more prohibitive to inclusion than physical or mental impairments is a huge focal point of the social model of disability, a framework that has been developed by disability activists over the past 45 years. In part 2 of this series on acceptance, I will dive deeper into exploring the social model of disability and its implications. For now, I want to use this brief definition of the model to make my point that acceptance of my disability isn’t something I find inside of myself. I am doing the inner work of learning to accept my reality on a daily basis, but it is difficult to wholly accept my disability when my physical limitations mark me as separate in the culture I live in. I will learn to accept my fatigue, my often sluggish cognitions, my body’s pain, but the pain of that separation and isolation is one that I refuse to accept.
Instead of tying this post up with a neat little bow in the form of a positive anecdote, or something uplifting I have learned, I want to encourage you to sit with this question: Why is the impetus for acceptance so often placed entirely on the shoulders of those experiencing physical limitations, neurological differences, and chronic pain, instead of on the people around us whose genuine acceptance and understanding has the potential to deconstruct the social and societal barriers that often cause us more grief than anything happening inside our bodies?
Further Reading (aka things I read before writing this):
“Grieving Chronic Illness and Injury–Infinite Losses”
“Disabled People are a Diverse Group–But Loneliness is a Common Experience”
“Understanding Social Isolation: Chronic Conditions” (Impact of Social Isolation)
“Social Model of Disability”
“Rethinking Disability: The Social Model of Disability and Chronic Disease” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4596173/