Injury, disability, and the art of being a better advocate

Two weeks after I got surgery for a ruptured ankle ligament, a friend took me to a weekend of project presentations by the Montana Teacher Leaders in the Arts, a group of teachers and artists across the state who have worked for the last year to integrate arts education into their schools and communities. I was thrilled at the opportunity, especially since the agenda included a workshop led by Karen Kauffman, dance educator extraordinaire.

But my excitement was punctuated by the comic anxiety of being a stranger on a knee scooter with a poor turning radius, hopping and three-legged bear crawling around the historic (and non-ADA compliant) building where the conference was held. When it came to Karen’s workshop, I was glad to be adept with movement adaptation but I still felt anxieties about standing out in a group of strangers, about choosing “wrong” movements, about looking silly, about not being seen and getting stepped on or kicked.

The magnitude of this anxiety was striking. I was privileged to have a limitation only temporarily, to be able to move freely and (mostly) independently, to be able to communicate my needs clearly and receive little push back or judgement from others, and to be able to use tools and skills I already possess to make a successful experience. During my recovery, joked that it was fitting to be working with restricted movement and limited mobility since I work with adaptive and integrated dance. And yes, injury and recovery was a great and frustrating learning opportunity but I was privileged to be able to walk away (literally) from the experience.

There are blind-spots in the able-bodied world, from our build environments to the language and affect we use to talk about ability, recovery, and injury. To be temporary disabled does not mean I “understand what it’s like” to be disabled because it can’t account for the chronic physical, mental, and emotional fatigue of being disabled in an ableist world. But I do want to take the time to actively reflect on the experience in order to become better ally, advocate, teacher, and peer and encourage others to examine unspoken aspects of our space and language that affect folks with disability or mobility issues.

Dance has affair with injury which threatens nuanced pain

The common narrative of the master dancer includes glorified injury and pain. This narrative applauds restrictive eating, bloody feet, permanent bodily deformity from extensive training, and pushing through to make pain look easy or beautiful as “sacrifice” and “discipline.” (Society’s prevailing view of dance as feminine and its intersection with the aesthetics of frailty/grace are a topic of a different discussion.)

Injuries become battle scars and dancers tell stories about performances with torn muscles and fractured ribs. Injury is more than inconvenience or pain; The ability to move past physical pain and bodily limitations become a statement about dedication, discipline, and devotion. When the body performs and conforms adequately, it is an indication of the strength of the mind and character. But this is a fallacy like classic, vapid Snow White, fairest of them all, whose exterior beauty is an indication of her abundant inner charm and grace.

“Wait, what does a culture that glorifies pain and conflates graceful, beautiful bodies with moral and mental fortitude have to do with disability rights?” you may ask.

Glorifying pain and injury does not create a safe space for people with different pain thresholds and to whom injury and pain may be severely detrimental.

Pain is very real and should not be taken lightly. I have experienced pain that was superficial, muscular, skeletal, and autoimmune and those experiences are all radically different. At its most straightforward, pain is an indication of injury. But pain can indicate more pain to come. Pain can indicate a body that is at war with its surroundings or at war itself. Pain can indicate a limit that shouldn’t be pushed. And sometime pain indicates nothing but its own presence. If we do not listen to pain and understand that it speaks in different ways, we risk causing harm to our bodies, minds, and spirits. We risk gaslighting ourselves and others into thinking that pain is no big deal when in fact it might be.

Advocating that moving through injuries is a sign of dedication sends a really shitty message to people to whom injury and pain can be degenerative. I mean this in a physical, mental, and emotional way. If you are not familiar with the spoon theory, that is a good 101 about how not all thresholds are created equally.

It is vital that we believe people when they express their limits. It is also vital we understand that sometimes we need to go the extra mile to make an environment where people are comfortable expressing their limits since the overwhelming attitude favors stoicism and injury.

We can acknowledge hard work and discipline without glorifying pain or injury.

Movement can be crafted in a way that respects and is responsive to bodily limits and boundaries. We can encourage internal and external exploration, we can applaud people for pushing the limits of their comfort and we can applaud them for being able to establish healthy boundaries. We can applaud and support people when they ask for and receive help and when they give help to others. We can realize that it is always work to dive into bodily exploration.

Talking about concrete realities does not replace interpersonal communication 

As I cycled through various orthopedic braces for my ankle, people asked me freely and often to share what was going on with my body. Sometimes this was relevant (at work when a brace affected my ability to perform on a team) and sometimes it was not. Some remarks were motivated by concern, some by curiosity, some by the desire to gossip, and some by entitled rudeness (like the time someone asked me, “Do you actually need that or are you just being lazy?”).

Many people were very considerate about tasks they would ask me to perform or favors they could help me with. Some people didn’t bother to try. And some people (who may have felt they were being considerate) were really quite rude. The difference for me was between asking a questions versus making assumptions (eg. “Would you like me to carry that shopping bag?” vs. just taking things out of my arms).

I was moderately surprised at how many people seemed unable to communicate their observations, intentions, requests that pertained to my physical comfort and well-being. While people freely asked me about my injury, they failed to communicate directly about my needs or desires pertaining to that injury. This led me to two thoughts:

The first thought is that having an indication of an injury doesn’t carry the same taboo as a chronic injury or disability (see previous section, you can also replace “dance” with “sports”). If people can talk about injury but can’t effectively ask about the needs of an injured person, how are they communicating (or not) with people with disabilities?

The second thought is that having a visible indicator of injury or disability can validate (for lack of better words) a need for help or assistance. But people with invisible illnesses and disability do not have the same kind of indicators of their exhaustion levels and physical limitations. Basing assumptions about people’s needs based on their physical appearance can maybe be helpful but it doesn’t replace the invaluable information that you get from just talking to a person respectfully about their needs.

It can be emotionally draining to be solely responsible for your physical adaptations and well-being

I have seen a lot of advice that looks a lot like this: “BE YOUR OWN ADVOCATE!” While I do think we should all strive to effectively communicate our needs, it can be exhausting and frustrating to feel like you are constantly bringing attention to yourself by asking for help or adaptations. So the question is: how can we all become better advocates? It does not mean speaking for other people, bringing them uncomfortable/unwanted attention, or asking them to do more work by speaking up (because sometimes that is exhausting).

Being an advocate can mean making an environment where expressing needs and boundaries is safe and respected.  Being an advocate means taking initiative to check in and communicate and respecting that sometimes communication does not feel comfortable. Being an advocate means not posturing your comfort as the priority.

Part of my adaptive and integrated dance classes involve coming up with physical adaptations for people using mobility devices, who have difficulty moving quickly, difficulty changing levels, etc. Several sessions ago, I witnessed myself have thought along the lines of, “We are just doing the same things as the standing people, why do I need to be demonstrating this sitting version?” I’m pretty uncomfortable with that thought because it has some nasty undercurrents.

The first undercurrent to that thought is that others’ limitations are not my problem. Many of us learned from an individualistic society that unfortunate things happen but there is not much we can do and it isn’t really our concern. And yes, in many dance forms, other peoples’ limitations are not your problem until you are partnering or otherwise physically dependent on them. But the thought reveals an ethical question: do you actively acknowledge and integrate others’ limitations and needs or do you decide that limitations that do not affect your body are not part of your work?

The second undercurrent is that it is a hassle to demonstrate physical adaptations for others. Why does this feel like a hassle? Because it is uncomfortable or awkward? Because it takes effort to translate movement? I can look at these anxieties and discomforts, acknowledge them, and then let them go because my discomfort is not the priority of the situation. I could opt to exercise my able bodied privilege by standing up, feeling more comfortable, and resign a student to isolation and confusion. This leads us back to our first ethical question.

The third undercurrent is that people with limitations should be able to intuit their own adaptations.  We don’t expect beginning dance students to successfully execute new steps without supervision, feedback, and guidance just because “they know their bodies best.” It’s obvious to me that our sitting adaptation is the same as our standing version because I have years of training and experience. Somebody with lived experience of their physical limitations can provide insight into the function of their body, but they are in class to learn something new and deserve all of the visual, auditory, kinesthetic, and tactile tools we can offer.

Being a better advocate means owning that thought and calling its bullshit. Being a better advocate means acknowledging the ways that I am responsible for that thought, but how it is also a cultural artifact of being conditioned in a particular time and space. Being a better advocate means understanding how similar conditioning is omnipresent and needs to be actively exposed and replaced.

Limitation is possibility but possibility doesn’t mean it’s not frustrating

At the beginning of this post, I revealed that I joked about the opportunity to learn more about physical limitations and dance adaptations through my experience of recovery. And I did. I worked on choreography that excluded my left foot and all left-foot related movement vocabulary. I was continually frustrated by the limitations. I found myself wanting to get better so that I could use range of expression that has been important to me. I also ended up with some choreography that I would not have generated if I were weight bearing on both feet.

I also said at the beginning of the post and want to reiterate that injury is not disability. The experience of temporary disability and movement restriction should not

The limits, possibilities, frustrations, and opportunities of people with disability are dynamic. Needs, feeling, and boundaries are dynamic.  The way that we communicate and ask about those needs, feeling, and boundaries is important. Our bodies are already physically structured in buildings, schools, and playgrounds, temporally structured in 40+hour work weeks, often at sitting jobs, and optically infiltrated by thin, fit, attractive, light-skinned people. These are general cultural frustrations but they matter, especially to people to whom these structures are always exclusionary. It is important that we nurture growth and encourage expression and that we also make room to acknowledge the very real frustrations of disability, limited mobility, and restricted movement.