6 creatives on how to make self-care more inclusive

Mainstream culture tends to ignore the ways the trend leaves out those who are disabled or chronically sick.

by Sara Radin
31 May 2019, 2:04pm

In a time when capitalism has turned wellness into a full-blown lifestyle, mainstream culture tends to ignore the ways the trend is non-inclusive of those who are disabled or chronically sick, making the notions surrounding self-care often steeped in ableist culture. According to Ezra Benus, an artist based in New York, who makes mixed media work that explores his identity as someone who is chronically ill, this creates "a packaged idea of health, that is usually exclusive and prohibitive for many folks based on socio-economic status, of which many disabled people do not fit into.”

While some aspects of the movement are helpful to everyone (like taking time for yourself), it tends to sell us one limited and glossy definition of what is well that not everyone falls into. In this way, Tonya Ingram, an author and poet, feels “the wellness trend is harmful to disabled and sick folks because it is not entirely inclusive of the various needs of the community.”

So, how can self-care be more inclusive or representative of a spectrum of abilities? i-D spoke with a group of creatives about the commodification of self-care, what the wellness industry tends to get wrong about taking care of oneself, and what needs to change.

Tonya Ingram, poet and author, Los Angeles

“Being sick is not a monolith. I wish people knew that there are good and bad days. There are days when I can dance to Beyoncé for an hour and there are days when I can barely leave my bed. I want to turn up at the club and fall in love. My illness is not a weakness. We don’t deserve to be counted out. We are not sick. We are superhuman.

I think wellness needs to incorporate trends that allow for people to be ok with not feeling ok. Companies need to speak more to the disabled/sick experience. Maybe that’s including mediation geared towards people with autoimmune diseases or fresh-pressed juice that are nutritious for people with kidney failure diets. Society should find more ways to make disability less lonely of an experience.

The wellness trend is harmful to disabled/sick folks because it is not entirely inclusive to the various needs of the disabled/sick community. For example, not all wellness trends are accessible to us. Yoga is a great wellness exercise but my lupus sometimes creates arthritis in my hands and knees which makes yoga difficult.”

Tonya is currently doing a campaign for a new kidney and raising funds for her medical expenses - more information can be found here .

T. Sydney Bergeron Mikus, writer and founder of Simple Politicks, New York City

Most of my self-care is very boring. It's eating well — meaning foods that don't make me sicker— and also eating enough, because it's hard to keep your weight up when your diet is as limited as mine has to be. It's counting out my pills every week. It's going home early from the party to make sure I get enough sleep. It's exercising regularly. It's keeping track of my prescriptions so I don't miss any doses if there's a problem with the pharmacy. It's making daily and weekly lists to make sure I don't forget anything important. It's drinking enough water to keep my blood pressure up. It’s doing tick checks after I’ve been in contact with animals or environments that may be carrying ticks.

There's some fun self-care mixed in with all of this, such as socializing with friends, taking dance breaks when my anxiety is high, spending time with my altar, and playing with my cat! But the treat-yourself brand of self-care that's popular on social media is not accurate to what is best for me caring for myself as a chronically ill person.

The main issue I have with the wellness industry is that it's often unfortunately utilized as a way to blame people for their health or lack thereof. The wellness industry doesn't factor in genetics, socioeconomics, location and environment, or luck, which are all factors with a huge influence on disability and chronic illness. I, for example, have financial privilege that ensures I'm well fed and sleeping enough and, even so, I'm sick. I can't control that.

Individual perfect health should not be the goal. Instead, the wellness community should focus on healthcare reform, and making sure everyone has their basic human needs and any necessary accommodations met. The wellness community needs to re-evaluate their language to ensure they aren’t blaming sick and disabled people for our conditions, but instead work to reshape social structures so they can uplift us.

Ezra Benus, artist, educator, and disability arts/accessibility advisor, New York City

Self-care is tethered to my daily existence and most things I do. It is the number one thing I do so I can attempt to participate in normative societal obligations and functions. So, when it’s "packaged
and co-opted as "wellness" with ascribed items, activities, etc. it puts crip self-care and notions of wellness to the side. The wellness industry doesn’t account for the “wellness” society we have constructed out of necessity to survive, including the time and process of dealing with rest, doctors, treatment, fatigue, chronic pain, health care bureaucracy, work environments that are not accommodating.

The idea of "wellness" is steeped in ableist culture. It promotes a packaged idea of health, that is usually exclusive and prohibitive for many folks based on socio-economic status, of which many disabled people do not fit into. So it’s not being conceived of for or marketed towards disability communities and it’s also creating the notion that wellness can be bought and achieved through simple methods, diets, products, or exercise regimens. But disabled and sick people know their own methods and hacks for “wellness” that are often not glitzy enough to be included.

The idea that everyone presumes to know another’s “wellness” also leads people to interject and offer unsolicited and ignorant advice. One of the most uncomfortable things is for strangers to ask about the particulars of my diagnosis and other aspects of my disease and disability, and then offer unsolicited advice. It’s almost as if people don’t think disabled people know what we need, rather they feel the need to help when we don’t want or need that kind of help. It fosters behaviors that promote harmful notions of pity and cure-focused mentalities for those who are disabled. Disabled people should be in leadership roles, in public facing roles, and should have platforms to present their work and thoughts to a wider audience. Society needs to invest in disability innovation that is led by disabled people. Wellness without disability is a lucrative business but we need to shift our culture and that starts with embedding disability culture in the midst of popular culture.

Becki Moss, photographer & visual storyteller, Auckland/Wellington, NZ

I feel like a strong aspect and belief held by many who embrace the wellness trend is that you have complete control over your health and that if you're not healthy then it must be a result of something in your lifestyle that you're doing wrong. I've experienced countless occasions where people (often people I don't know very well) will suggest that I change my diet or start yoga. I find this extremely hurtful and condescending as someone who has spent the majority of their life unwell. I was 8 when I first started getting kidney infections (which were diagnosed for 4 years) and now I'm 23 with chronic kidney disease, endometriosis, and depression. My family and I have spent the last 15 years trying every different type of alternative treatment possible and I still maintain an incredibly healthy diet.

For me, it takes a lot of energy just to function day-to-day and sometimes self-care involves doing things such as getting out of bed, having a shower, and eating a proper meal. These may seem insignificant to able-bodied people but may be a huge achievement for someone who is disabled or chronically ill.

Sometimes you can be doing all you can and yet still have an illness of some sort. I feel like when "wellness advocates/influencers" talk about their "miracle recoveries" from various illnesses, it exacerbates the problem. I wish that people would take a moment before judging others' illnesses as something that is self-inflicted due to a lack of self-care.

Often, but not always, chronically ill and/or disabled people have less money (in many cases because they cannot work full-time) and therefore being able to spend money on self-care and wellness luxuries such as only organic food or yoga classes is just not an option.

Shira Strongin, Founder of @sickchickssisters, Washington DC and California

Wellness culture promotes a lot of eating disorder behaviors and can actually be super toxic to individuals attempting recovery. We need to talk about how self-care isn't one size fits all. Sometimes self-care is face masks and manicures, but other times self-care is getting your prescriptions refilled. Both are valid and should be celebrated.

The ability to take care of yourself is not something granted to everyone with a disability or illness and it furthers the idea that there is something wrong with you if you are not society's definition of "well." In this way, the wellness trend is inherently ableist and stems from a place of privilege.

Also, a lot of what is used for self-care culture, such as yoga, is used as almost a punishment for disabled or chronically ill individual. We fight so hard against the stereotype that if we just did yoga all of our problems would be solved that it doesn't seem like such an inviting activity.

Karolina Chorvath, Journalist and ambassador for Crohns Colitis Foundation, Boston

For disabled people, self-care is not extra, it’s necessary. But I think self-care can often be seen as purely luxury — and sometimes it is. But for people living with disabilities, those "luxuries" like therapy, a specific diet, yoga, etc. are crucial to our health and survival. Yes, sometimes a face mask can be self-care. But more often, it's meditation, creating a support system, avoiding toxic relationships, and setting healthy boundaries for yourself.

In some ways, I'm glad self-care has become a trend. Coming from a Slavic/immigrant culture, self-care was often portrayed as superfluous as I was growing up. It's taken a lot of work to get over that martyr complex. We shouldn't feel guilty or wasteful for taking care of our bodies and minds. We have to put on our own oxygen masks before we can help anyone else, right?

Something we often hear is "it must be nice to be able to do that!" When in fact, that self-care — or rather, self preservation — is a central tenant to our treatment. Even something as simple as taking deep breaths can rewire our nervous system and heal us.

Disabled people often have expenses — like astronomical medical bills — that they need to worry about and don't have the money for Instagram's version of self-care. I think if the trend incorporated free methods of self-care, like meditation, it could be a lot more inclusive. I also think that the stock image of self-care being a skinny white woman in Lululemon is pretty damaging. Show me a full-bodied womxn meditating and loving her body just how it is.

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