Why aren't we listening to people with disabilities?
Early in March 2020, when the coronavirus pandemic began to make serious intrusions on daily life throughout much of the world, I saw a trend within the yoga community begin to emerge. Many were scrambling to figure out how to respond to this hovering threat to our sources of income, health, and peace of mind. Task forces, online events, and endless resources began to flood my inbox and social media timelines. The community rallied, but left one important resource largely untapped: people with physical disabilities, who have mastered post-doctoral levels of survival strategies and adaptation to uncertainty.
As a person with multiple physical challenges (below knee amputation, urinary diversion, kidney transplant) and about 50+ years of solid experience in coping with life-threatening uncertainties and adapting daily to the next “new normal,” I was not surprised when the “experts” came to town and people like me were pushed into the shadows. (For the reasons why I was not surprised, see the section on bias below.)
I understand that collectively we are all likely already overwhelmed with information as we navigate this time. However, if as a yoga community we are going to move forward and embrace diversity, equity, and inclusion fully, we must open our minds and hearts to the possibility that people with physical disabilities have important things to add to this conversation on change.
How can we as a collective move forward?
Begin with our biases.
What are our biases and fears when it comes to physical disability?
Whether we are willing to admit it or not, we all have biases, many formed from social norms, family upbringing, and personal perceptions. It takes deep self-inquiry to learn how and where we are holding on to them. Assuming a person with a physical disability cannot do something, feeling a concern about not knowing what to do or say in their presence, and seeing the person as other are beliefs of which we may not be conscious.
On a deeper level, the “in your face” vulnerability of a person with a physical disability can bring up our own fears about death and an “It could happen to me” mindset. Often, we push those fears away by feeling guilty that we are “able-bodied” and assuage our guilt by “coming to the rescue” rather than honoring the person’s strength and ingenuity. Or we cope by thinking the physical disability is the person’s fault, possibly even related to karma from a past life.
Rhonda, a yoga teacher living with lupus, comments, “At least in my experience I have had to keep on as though nothing is actually wrong with my body. Because [people thinking] ‘You don’t look like you are (sick, in pain, having brain fog, etc.)’ is always an issue. Also, I get constant, although well-meaning, advice from various sources when they do find out the truth.”
Most importantly, we must remember that it is not our job to interfere.
We can and must, however, provide accessible yoga practices—although unfortunately many yoga studios and online platforms are not accessible at all. But if they are, there shouldn’t be a special reward. For example, a yoga studio who wants to stand out from the crowd by being accessible, or a yoga teacher teaching to all bodies being called “amazing, incredible,” or “someone making waves in the yoga world,” when in fact there have been seasoned yoga teachers quietly opening their doors to all and adapting yoga to any body that entered their space for many years without the benefit of social media or a marketing platform. Yoga is for all bodies. Period.
We must also keep doing our practice. Yoga provides some beautiful tools to help us unravel our biases. Aparigraha (non-clinging), ahimsa (non-violence), and svadhyaya (self-study) are all excellent practices to begin to see the places where we unconsciously project “other.”
Let’s take a closer look at one of those biases now. How are we patronizing people with physical disability without knowing it?
“I feel like myself and others with different abilities are utilized for charity and sympathy but not valued or weighted as experts in our very own area of specialty, living with physical disability. The strength, endurance, and fortitude that we suit up with daily is brushed off. My unique perspective allows me to see and experience the world in a different way,” remarks Rebecca, a yoga teacher with syndactyly (a condition present from birth where fingers or toes are joined or webbed).
Being patronized in any way is a truly unpleasant, disrespectful experience. People with physical disabilities deal with it all the time, even in the yoga world. “On the mat, I feel that those with different abilities are offered a space to join, however, not to lead,” Rebecca continues, “Yoga is offered as a therapy for us. What I would like to see in a yoga class is a person with different abilities given the opportunity to share on svadhyaya.”
People with physical disability have seen and heard it all, from tilted head faux compassion look, to intense stares, to questions like “What happened to you?” to random comments like “You’re so beautiful (for someone with your disability),” “I would just kill myself if I had to live like you,” or “I know what you are going through (let me dismiss your concerns all together).”
Patronizing a person with a physical disability brings up our own assumptions.
Are we assuming, for example, that because a person has a physical disability they also have a cognitive disability? This shows up when our tone of voice and speed of speech changes or when we congratulate a person with a physical disability who performs a basic task. For example, whispering to a person with a physical disability as if they were a child, or “overcaring,” is immensely annoying to anyone.
And if our unwarranted help is not welcome, do we become offended?
One area where we can be mind-bogglingly patronizing is with personal space. Someone in a wheelchair does not want you to greet them by patting them on the head or rubbing their shoulder. If they use a mobility device such as a wheelchair, crutches, a walker, or prosthetic limb, these are often considered extensions of their own body. Touching these without permission is a violation of personal space.
Pay attention to how you interact with people who have physical disabilities. Remember: Many people have been living with physical disabilities their entire lives. They know their bodies and have an exceptionally good sense of their autonomy. Do not attempt to take that away from them by being patronizing.
When asked if people with physical disabilities are respected for their knowledge and expertise in living with physical disabilities, my interviewees did not hold back.
“No,” says Aristotle. “Regardless of how a patient advocates for themselves, we still see them (professionals working with physical disability) as experts on our own conditions.” In other words, any assertion of power and authority over a person with a physical disability can cause harm to a person’s self-advocacy. We can instead be curious, and not know, even if we think we do know.
And Abby, a yoga teacher with oculocutaneous albinism, pulls no punches. “Absolutely not. [Though] I do think that if someone (disabled) is white, attractive, doing above and beyond extraordinary stuff, like setting records in extreme sports, the odds are higher for them to be respected for their expertise in navigating a physical disability.”
Rebecca validates Abby. “In my experience, people do not ask for my guidance or advice on adapting to uncertainty. Even though adaptation is a skill I rely on for daily survival, people do not want to acknowledge differences or challenges; therefore, they do not ask! My physical difference is often treated as a case for sympathy when it could be an education opportunity!”
Rhonda confirms. “Absolutely not. There is an exception, of course, and that is within the medical community, at least with my own team of doctors.”
Are we willing to listen to the wisdom of these leaders? Do we have the patience to do so? If so, here are some strategies on asking and listening to the real uncertainty experts: those who live it.
See the person as a person rather than as a physical disability.
People with disabilities, in a way, are natural yogis, so skilled at being present, adapting to circumstances beyond their control. Note their capacity for bravery, resilience, and incredible resolve. They often know their bodies so well because every day is a new adventure in dealing with “What now?” Just try entertaining the idea of entering a building with no handicapped access for an appointment when you are in a wheelchair. Or being hired to speak at a conference when there is no handicapped parking in sight and no elevator to get to the facility.
“Questions one could ask are: How do you face uncertainty in life? What advice do you have for people who have not dealt with uncertainty in the past, but must do so now because of the pandemic. Describe uncertainty. How is uncertainty in life similar and different to uncertainty in yoga? How can adaptation affect uncertainty?” suggests Rebecca.
Rhonda believes in honoring those who are courageous enough to ask a person with physical disability questions about how to live with uncertainty. She encourages people to be advocates for their own well-being. She suggests opening the conversation with “I am currently challenged with (name specific) at this time. What are some tools that you can suggest that might be helpful for me to add to my toolbox? What support groups do you know of that exist that I might be able to turn to for (specific)? Where can I learn more about coping with (specific challenge)?”
Sadly, as is often the case, the lack of representation of people with physical disabilities as a resource is prevalent. Abby notes this, saying, “No one has ever reached out to me for my guidance on dealing with loss and change because they think my perspective as a disabled person is useful.”
Be open and willing to be vulnerable with those who have created magnificent lives despite and often because of their own vulnerabilities. People with physical disabilities can help us all to live more in the moment and go with the flow in life.
One significant way we can change the narrative of our biases is to change the language about who and how we share yoga. For years, the phrase “underserved” has been making the rounds in yoga circles. While meant to be compassionately inclusive, to those for whom the phrase is designed it can feel off-putting and, again, patronizing.
How can we lose the “serving the underserved” story? With what can that be replaced?
When asked this question to my interviewees, the response was quite visceral.
Rhonda reacted, “I loathe that term and feel it’s extremely disrespectful!”
While it is true that there are many communities that are still not receiving the benefits of yoga, it is not necessarily true that those communities want to be “served.” Even the word service can appear patronizing. Serving a community, especially if we are outside that community, feels somewhat colonialist. Instead, we can strive to share the healing blessings of yoga with communities that do not have the same access as others because that is our dharma (duty).
Rebecca explains, “I do feel that myself and others like me have not been seen or heard! And therein lies the problem; I am not looking to be served! I want to be acknowledged and accepted for what I have to share.”
If we consider our motives and the meaning behind the language we use, we may face some hard truths about our own biases. Rather than attempting to “serve the underserved,” we should simply strive to not only make yoga more accessible for all, but also to be open to learning from people who have disabilities.
How to cope well with uncertainty and resilience according to people with physical disabilities
The brain and body have incredible ways of adapting and reorganizing when we are required to step into the unknown. A very recent study at Vanderbilt University discovered that when certain brain cells are stronger, producing “cognitive flexibility,” a person can more easily adapt to change.
People with physical disabilities have gold medals in cognitive flexibility. For example, as an amputee, walking down a steep hill is an exercise in strategy and innovation, one I have been repeating for over 40 years. Extending that principle, responding to uncertainty has already prepared my brain and body to find ways to think outside the box. Add the practices of pranayama, meditation, asana (to which I adapt each pose), and mantra, I am well equipped to cope with change.
“I believe that people with physical disabilities are lucky because it is a shortcut to santosha (contentment), aparigraha (non-grasping), and pratyahara (drawing one’s awareness, focusing inward),” says Abby. “I think sometimes for able-bodied people, it can be more frightening to go inward. We get 80 percent of our feedback from our eyesight, so I never really have a day where I am not maintaining my practice of being realistic about my limits and adapting. It’s hard for most people to release the idea of there being only one way, and that disabled people often have a more efficient solution,” she adds.
Rebecca says,“If someone asked me for advice on how I deal with uncertainty, I would gladly share my experience. Uncertainty is a major part of life for me, and other different-abled people. Managing any potential anxiety is paramount. One way I handle uncertainty is to stay grounded with mantras. Safety and security mantras aid in reminding me that I am protected, and all things work out for my well-being. Sat Nam.”
Closing reflections
A person with a physical disability has learned that the world does not always accommodate them. Instead they have accommodated their body and mind to the world. May we expand our minds to see the incredible wisdom that people with physical disabilities have to offer. Ask them (us), the real experts, how to cope right now. We can show you how we have overcome. We can lead the way in resilience. We have done this. We know how.
Listen to us.
Author's note: I purposely chose to focus on people with physical disabilities. Although there are overlaps with chronic illness and cognitive disabilities, there are still significant differences in each of these groups.
Resources
Care as Colonialism. (n.d.). Retrieved on September 28, 2020.
Special thanks to Rhonda, Rebecca, Abby, and Aristotle.
About the Teacher
