I think this Buzzfeed piece on Liz Jackson and her petition to get J. Crew to carry stylish canes in their catalogue does a great job of explaining why the concerns of Disability Studies apply to basically everyone. We will all spend our lives moving in and out of categories of ablebodiedness and disability. Knee surgery? Guess what, you’re disabled until that knee heals. Lupus or RA? Your disability caused by joint involvement and fatigue may wax and wane, making a cane necessary sometimes, optional other times, and, on a good day, totally unnecessary. If you’ve ever had to shop for a cane out of necessity, you know why a stylish, properly-proportioned is so important.
Developing useful products for people with disabilities that are also aesthetically pleasing or attractive reduces stigma about disability and makes these products more widely available. We all use “assistive devices” all the time, even if we don’t call them that. The example of audiobooks (in the Buzzfeed article) is a great one. The food processor was also developed to assist people with disabilities and now it’s a kitchen staple. I love my Dragon Dictate software for days when my hands and wrists hurt too much to type on a traditional keyboard.
I think of a company like OXO which started out making products for people whose grip and hand strength had been reduced by arthritis. They used principles of universal design to make their products usable by as many people as possible, regardless of age, strength, or handedness. Now people who don’t consider themselves “disabled” buy their products because the tools are attractive and easy to use, and people with disabilities can go into Bed Bath and Beyond and find a whole wall of attractive, relatively inexpensive “assistive devices.”
“When you are ill or disabled, do not feel that you have failed in some way, do not feel guilty. Do not blame life for treating you unfairly, but do not blame yourself either.” –Eckhart Tolle, The Power of Now (218)
For the past few weeks I’ve been reading bits and pieces of Eckhart Tolle’s The Power of Now. I appreciate the ways in which he brings together anecdotes and parables from various religious and philosophical traditions in order to illustrate his arguments about surrender and presence. I suspect this is why his books have been so popular, and why he received the ringing endorsement of someone like Oprah. For the most part, he also manages to stay away from the sort of woo-woo, new age-y stuff that reaks of pseudoscience.
I will be the first person to agree that pain and suffering are separate but related phenomena, and that the stories we tell ourselves about pain (physical, mental, or emotional) amplify our pain and lead to suffering. I also recognize that one of the only ways to short circuit this process of amplification is to try to be mindfully present at all times. For me, the best way to manage the physical pain of autoimmune disease is by staying fully present with that pain as it is– not the story of how the pain is like or unlike other pain, not the story of how the pain is never going to stop, or is only going to get worse, or how my life would be so much better without it, and definitely not the story of how the pain is the single most defining characteristic of my life. It’s taken me a long time to get to that point, to accept that the things my ego wants (“identify with the pain!” “be a victim!”) work against my chances for finding a lasting sense of peace and contentment.
So why am I left with a bad taste lingering in my mouth?
First, it’s all well and good to stop identifying with pain, but what happens when that pain is caused by circumstances that could be changed, either right now or in order to benefit someone else in the future? I think about the battles those of us involved in patient advocacy fight every day: better access to healthcare and prescription drugs, more research on rare and chronic diseases, appropriate compensation and benefits for doctors who go into unpopular specialties like rheumatology. Individually, we do not have the power to make the systemic changes that would improve the lives of patients. But collectively, we can fight those battles by telling our stories to people who do have the power to make changes: elected officials, scientists, researchers, insurance companies, and clinicians. How do we tell the story of our pain–and yes, suffering–without identifying with it? How do we use the power of our individual and collective narratives without become overwhelmed by them? Where is the self-help book to teach me about that?
More importantly, whether it’s Tolle, or someone like Lynn Grabhorn, many of the teachings that seek to lead people away from suffering fail to take into account the very real physical pain of chronic illness. Despite statements like the quote from Tolle that I open with above, many authors who write about mindfulness and the alleviation of suffering have accepted and re-purposed subtle and not-so-subtle cultural and religious messages about chronic illness in their work. They say that people “attract” illness to themselves; that illness is the natural outcome of negative feelings; that we need to try harder at being more present, more aware, more at peace, and then our illnesses will go away because they’ve taught us the “lesson” they were there to teach us. I am always shocked when I see these messages, sometimes subtle or implicit, sometime overt, mixed in with what is otherwise very helpful advice. Certainly, it’s more likely that someone will get sick with a cold or minor infection when they scrimp on sleep and eat a diet lacking in necessary nutrients (often as a result of “stress”). But that kind of “sick” is very different from cancer or autoimmune or genetic disease. And it tells me that these authors–like many physicians– have never had to deal with a persistent chronic condition, and find it difficult or even frightening to empathize with someone who has. Are we really still retracing the steps of the disproved “Cancer Personality” hypothesis or the “repressed anger” stereotype of the “Rheumatoid Arthritis Personality”?
I guess it just comes down to “take what you need and leave the rest.” I shouldn’t expect people to “get it,” even if they seem otherwise enlightened. In the meantime, if anyone is interested in an excellent book about mindfulness and chronic illness, I highly recommend How to Be Sick by Toni Bernhard.