Ableism and Abhinivesa

"Many ask me whether pranayama, controlling the breath, postpones old age. Why worry about it? Death is certain. Let it come when it comes. Just keep working. The Soul has no age. It doesn't die. Only the body decays. And yes, we must never forget the body, since it is the garden we must cherish and cultivate."
- BKS Iyengar, Light on Life, p.104-5

If we are supremely blessed, we will have the opportunity to witness a loved one’s transition from earthly life to the spiritual realm. If we have the privilege of caring for elders and the terminally ill, we will bear loving witness to their physical demise. If we are able to trust and embrace the process, we will each get to realize that we are temporarily able-bodied, and accept the shifts from ability to dependence to disability, to our last breath, with grace.

Guruji, Shri BKS Iyengar, in the limelight most of his adult life, allowed the public to witness his transition into the eternal infinite. We witnessed over the years how the most robust and vigorous human we had ever known gradually became frail. We devotees watched his gait become tentative, listened to his worsening cough in the practice hall, and observed the evolution of his āsana practice to accommodate his aging condition. We watched Guruji wrestle with abhinivesa, the practice of clinging to life, by not running away from the inevitability of death, but stepping graciously into the final stage of his life, and into his final days. He refused to hide his increasing physical disability, and our love for him evolved from admiration of his prowess of the outer layers, to recognition that his greatest power lay much deeper within.

Photo by Andy Richter

Through his example, we were given a chance to overcome our inner ableist—that part of us which fears, rejects, and judges disability, whether it’s physical, emotional, or mental.

The inner ableist rears its head constantly, in a capitalist society that determines our worth based on our productivity and consumption. Someone who is dependent on others, in this framework, is a leech, a parasite, and a burden. Bad enough to start off as helpless babies and children, we are quickly taught to adhere to a schedule, follow adult regimens, and literally fit into a box. What a relief for our parents for us to grow up, get jobs, and live on our own. But this period is temporary. Anything can throw you back into a dependent state: illness, pregnancy and childbirth, an injury, and the ultimate inevitability, aging.

How does the inner ableist show up? Here are a few examples:

• Some friends have gathered at a lake, in canoes and kayaks. We are enjoying paddling around lazily on a summer afternoon. One friend, who is a poor swimmer, capsizes her canoe and is flailing for help. Another friend is nearby, but ignores her. The flailing friend eventually rights the canoe and climbs back in, wet and traumatized. Afterwards she asks her nearby friend why she didn’t help, to which she replies, “I didn’t want to embarrass you.”
• I’m watching the movie “Hugo” on the airplane. In one scene, a WW I veteran gets a catch in his prosthetic leg, which throws him forward, when he is trying to impress a woman. She does the “polite” thing of turning away and pretending she doesn’t notice. He gruffly explains that he has a war injury, and mortified, starts to turn and walk away.
• A cousin is caring for her father, my uncle, in the final stages of cancer. She is deeply disturbed by having to care for her once strong and capable father, seeing him writhe in pain, and be dependent on others to care for his most basic needs, including urination. She feels traumatized by bearing witness to his lack of ability, and caring for him in his final weeks.
• An acquaintance wonders out loud, when I tell her that I am serving as a live-in caregiver for an elder with brain and spinal cord injuries and paraplegia, if I have allowed him to become dependent on me, implying that independence should be the goal.

Do these stories spark feelings and associations in you, and remind you of other examples of ableism? They come up every single day once you start noticing.

I believe the root of ableism is indeed abhinivesa, which, as Patañjali’s Yoga Sutras inform us, afflict even the noblest of sages. That is, we are so materialistic and physically-bound, that we end up fearful of death, that ultimate mystery and loss of physical form.

We are also afraid of physical pain. In the throes of pain, it seems like the most objective experience in the world. But pain itself is deeply subjective. We’ve all had the experience of being in pain, and then forgetting about it when another experience displaces it. We’ve noticed how something can hurt like hell in one instance and in another, hardly bother us. 90% of women in the USA expect childbirth to be painful, while 90% of women in the Netherlands expect it NOT to be. That is, pain has many contingencies, and arises in any number of contexts.

Most of all, however, I think we are afraid of dependence and vulnerability. We are terrified of entrusting ourselves to others. We find it embarrassing and humiliating, and we don’t even want to ask for help. We have been brainwashed to buy into the belief that we must be supporting ourselves and earning money to be useful, and if that is impossible, we are worthless.

When I decided to leave my marriage in 2010, and thus leave my mutual funds, retirement accounts, life insurance, healthcare, and 2 houses, I had to look into the crystal ball and imagine how I would end up, especially in my final years, with my inevitable disabilities.

I decided that as long as I was nominally useful, even as a storyteller and lullaby-singer, that perhaps someone would put me up. And that even those abilities would eventually fade.

My father, in his final years, months, and days, gave me an incredible gift that many have not had the honor of receiving. His dying was gradual, and entailed a progressive loss of abilities, until the day came when he could no longer swallow water. My mother made the compassionate and courageous decision to take him to a hospice at that point. My family traveled to be with him, and I had the honor of staying with him for his final week.

My father was never particularly attentive nor devoted to us kids. A good Korean dad, he provided for us and modeled hard work, and left the parenting and nurturing up to our mother. I think a part of me always longed for a closer relationship with him, although I didn’t know how to pursue it or ask for it. But in that final week with him, despite or maybe because of his weakened, unconscious state, I was able to feel closer to him than I ever had when he was able-bodied.

I held his hand, read poetry and the Psalms to him, sang to him, swabbed his mouth, washed his face, and massaged his feet. We also spent many hours in silence, and I slept in a cot in his room. I was the only one present when he took his last breath, and I was holding his hand with my other hand on his chest, while the other family members were driving over. Tremendous, nonverbal healing transpired between us in that week that could not have happened earlier.

I hope my loved ones have a chance to care for me when I am disabled. I know I’m supposed to say exactly the opposite: I don’t want to be a burden to you, I want to be independent as long as possible, don’t worry about me.

But I would be lying, and I would be holding back what I know to be true: that there is so much potential for healing, reconciliation, love, and tenderness, when caring for a loved one with a disability, and I don’t want my family and friends to be deprived of that opportunity.

Overcoming ableism means recognizing and valuing our inner worth, which is eternal, more than our outer abilities, which are only temporary. It means being willing to reveal our vulnerabilities, and welcome others to do the same, in order to open the doors to healing. It means depending on each other, and not feeling ashamed to lean on someone, who will in turn, need to lean on others at some point.

Caregiving for someone unable to fully care for themselves, whether it’s an infant or child, an adult with disabilities, or an elder, is a kind of currency. It’s a work trade, a barter. Even if there is money involved, the payment doesn’t actually touch the real value of the care. Caregiving most likely will not be reciprocated tit for tat with the person we give care to, especially in this age when the family structure is in transition and being redefined. Instead caregiving as a currency enters an alternative “marketplace,” and invites others into this intimate exchange of giving and receiving.

What do caregivers receive? A glimpse of the eternal. An understanding of something beyond temporal reality. A chance to come to terms with their own vulnerabilities and disabilities. Opportunities to dismantle their inner ableist. A practice of overcoming abhinivesa, that most tenacious of the kleśas. May it be so.