Friday, April 19, 2019

Afterglow: Exploring the Path of Practice, IYNAUS 2019

It’s hard to speak truth to happy people. It’s painful to be the “complainer,” when everyone else is patting themselves on the back. The first serious research paper I remember writing in high school was about the mental health reform movement in the 19th century. Being a reformer is in my bones. Moving and shaking are inherent to my nature. Luckily I belong to the Iyengar Yoga tradition, in which “divine discontent” (a la Guruji) constantly drives us forward.

The 2019 IYNAUS convention was, by several standards, groundbreaking. The teachings, by Abhijata, were astounding, comprehensive, transformative, and healing. It’s the first time I recall the general membership meeting convening in a circle on the floor, instead of seating in rows with board members on a stage. We opened our hearts to each other, shed tears, and spoke openly. It’s the first time social justice has been explicitly explored in a workshop at a convention, and the thorny issue of race named head-on. It’s the first time we closed the gathering in a forum with our teacher, talking about our communities, expressing our needs, and sharing our resources.

But in other ways, this gathering was as painful as every other large convening of Iyengar Yoga teachers in the USA. If you’re willing to hear me out, please keep reading.

Do white people know what it feels like to be an extreme racial minority? East Asian, Southeast Asian, and South Asian folks were moderately represented at the gathering, but in so many ways, we Asian Americans have been taught to ignore one another and instead identify with the white majority. Why? Because for many of us, our immigrant parents trained us to succeed in the white mainstream world. They came here in pursuit of the American Dream, or perhaps driven by political oppression, believing their children would be better off assimilating into the dominant culture.

The handful of Black folks at the convention were an even more extreme minority. If I felt marginalized as a Korean American, I can only imagine what it felt like for them. The event was also overwhelmingly cisgender folks, and the yoga practice itself, based in cis language and culture. All these factors make these events challenging for many of us.

When members of marginalized groups don’t see themselves reflected back to them in their surroundings, they may inwardly shrink, detach, or dissociate. I tend to feel suffocated, and feel a need to get away. I’ve never stayed at an IYNAUS convention hotel for this reason, as well as the exorbitant costs. There’s a way in which I put on a cloak of protection when I am in majority white settings, and I need a safe space to take off that cloak.

It’s extremely painful to come from the majority Black city of Detroit into the vast ocean of whiteness which is an Iyengar Yoga convention. Let’s be clear: white spaces are constructed through generations of systemic oppression. I can only guess that it was the power of the yogic practice that gave Guruji the inner strength to withstand the rampant racism of traveling through white nations in his early years: denied housing, appropriate food, and transportation; treated as a mascot; and objectified, exoticized, and fetishized.

And despite my mrdu practice, I too, lean into my yoga practice to withstand the torrent of white culture in these settings. It’s gotten more difficult as I age instead of easier, because I am more sensitive to disparities, imbalances, and injustices than when I was younger, just surviving, and doing my best to raise my three children.

Does anyone else experience the immersion into middle and upper class culture as violence? Can anyone else relate to capitalism as systemic oppression? The Iyengar Yoga world is not exempt from the need to produce and consume, which drives our nation’s economy. Mega hotels and convention centers thrive on this need and culture. Packed into artificially-lit, window-less ballrooms for days on end, forced to purchase over-priced foods sourced unethically from industrial farms and international distributors, drinking water from Nestle jugs, in buildings staffed by immigrants and people of color…. Are you with me? Think about the garbage produced by this event. Where does it go? Think about the waste inherent in the hotel industry, including the dependence on fossil fuels and fresh water, our precious natural resources. What would it take to convene in a more carbon-neutral setting?

Am I going too far? Are you feeling a need to shut down? I ask you to stay in this discomfort with me a moment longer. After all, we are Iyengar Yoga practitioners.

The Iyengar Yoga hierarchy which we depend on to learn, grow, and evolve is also the hierarchy that kept survivors silent for decades regarding sexual abuse. How do we value, appreciate, and continue to learn from our teachers without tolerating the harm they may cause, intentionally or accidentally? Apparently, we Iyengar Yoga students in the USA are not exempt from patriarchy, considering how a prominent alpha male, Manouso Manos, was allowed to harm students for so long.

Finally, let us with humility and a wide lens, be willing to examine the question of cultural appropriation and Iyengar Yoga in the USA. In what ways are we prioritizing white American teachers over our Indian counterparts? In what ways are we butchering, misinterpreting, or misrepresenting our tradition and lineage? In what ways are we personally profiting from this Indian practice, without acknowledging or giving back to our roots? In what ways may we be complicit in caste-ism by upholding a Brahmin practice? Guruji and the Iyengars themselves were explicitly not caste-bound, and Guruji famously welcomed everyone of all castes, races, and religions into the study of yoga. Yet caste oppression still beleaguers Indians, according to my politically-aware Indian friends. In fact, the name Iyengar in India, especially in South India, I am told, is practically synonymous with Brahminism. How do we feel about that, and how do we deal with that? Is it any wonder that here in the USA, Iyengar Yoga is also associated with the well-to-do, and largely inaccessible to lower classes?

I don’t have the solutions to these problems, but I have a ton of ideas, and I bet you do too, if you’ve come this far in this essay. I believe the momentum is behind us to evolve Iyengar Yoga in the 21st century into a more just, balanced, healing path for our communities and our world. If you are very comfortable with all of this, I’d venture to guess you are approaching all of this from your head and not your heart. We need to go deeper into the discomfort, like holding a 5-minute Paśchimottanāsana, and resist the temptation to come out sooner, or to use too many props, or distract ourselves from the discomfort. I don’t claim that any of this is easy for me either. In fact, writing this makes me extremely vulnerable, and I know for a fact that many disagree with these ideas, and some will resent me. But how else does reform come about? Can we do this together? Contact me at

Tuesday, February 19, 2019

Building and Expanding and Embracing: Thoughts on Relationships

for Kai and Malachi on the occasion of their marriage, 17 February 2019

Beloved Kai and Malachi,

I hope you will receive my words, then do with them as you wish. As a mother, a wife of many years, and one who has experienced close friendships and partnerships, I feel I have much to share. My advice is not pithy nor simple and will not fit on a card or in a guestbook. Neither is it glossy, easy, nor romantic.

Like many others, I cried at your beautiful commitment ceremony of marriage. What are those tears about? It’s welcoming y’all into the “club,” the sacrament, the covenant. It’s the oxytocin rush of witnessing your tenderness with each other and with all of us. It’s the joy and relief of seeing you in partnership, committing to holding each other up and supporting each other no matter what. It’s celebrating the beautiful family y’all have already started, the luminous Coco Malie, and the beauty of joining with the Leong ohana. It’s a reconnection, for me, of my island roots in Hawai’i.

If I keep pondering, the tears at your wedding are also acknowledging the bittersweetness and struggle of long-term relationship, and knowing I cannot protect either of you from them. In fact the complexity of the commitment is what lends it beauty, meaning, and the tremendous growth each of you will experience over the decades, if you are willing.

What each of us brings to any committed relationship are both our best and worst selves. The degree to which we are willing to self-examine and self-assess is the degree to which the relationship will thrive, or not. Your partner becomes a mirror. As we are falling in love, they reflect back to us all that is wondrous and good about ourselves. They make us feel so good and bring out the best version of ourselves. Over time, they begin to reflect back to us all that is messy, unresolved, and wounded within ourselves. We don’t like how they make us feel and who we are when we are with them.

May this feeling be a call for self-reflection, self-care, and healing. We are all the walking wounded. As people of color, we carry the wounds of colonization and white supremacy/white degeneracy. White folks are not exempt from these wounds, as perpetrators, witting or unwitting. The injustice of having benefitted from racism also weighs heavily on white people. All Americans carry the burden and wounds of genocide committed on the indigenous people, as well as the wounds of 400 years of chattel slavery. These wounds may not be conscious, but if we genuinely open our hearts and minds, and take the time to educate ourselves, we can begin to recognize these wounds, and perhaps begin to heal them.

The collective suffering of our people and our nation cannot help but infiltrate and influence our intimate relationships. Speaking for myself, my internalized racism and generations of colonization as a Korean resulted in my allowing myself to feel like a second class citizen, even in my marriage. I had to step away from my marriage in order to heal.

I know this was very difficult and painful for you, Malachi, but I hope over time, it is understandable, forgivable, and that you can agree with me that it was all for the best. Out of this challenging marriage came three brilliant adult children, who embody the contradictions of love, and possiblities of reparations.

So, all that said, here are my recommendations for y’all to create a beautiful, lifelong relationship:

1.     Self-reflect: Avoid projecting and blaming. Take responsibility, without self-flagellation. Each day is an opportunity to forgive ourselves for our shortcomings. The degree to which you can forgive yourself is the degree to which you can forgive others. Why not assume that each person is doing their absolute best at any given moment? Of course, we will each fall short. Be gentle with one another for their shortcomings. Our shortcomings are what make us each fully human, complex, mysterious, and thus more beautiful.

2.     Protect each others’ hearts: Be vulnerable with each other and trust that they will respond with compassion and care. Instead of lashing out with anger or blame, share your wounds, and allow the entire spectrum of human emotion to flourish. Practice being emotionally honest. Be quick to ask for help from family, friends, and professionals as needed. If you are on a path of growth, it’s healthy to seek outside counsel from time to time, whether it’s a spiritual teacher, a relative, a mentor, or a psychotherapist. Make each other’s healing a priority, and remember, PEOPLE ARE MORE IMPORTANT THAN THINGS.

3.     Give each other space:“S/he’s in the shower!”: that is, they are still in the process of growing and becoming. Why yell at someone for being dirty when they are in the shower, washing themselves up? Let them take the time to fully clean up. After they come out of the shower, you might say, “Oh look, you missed a spot. Since it’s so hard to reach, shall I help you scrub it?” They might say yes, they might say no. Don’t take it personally either way. Everyone needs to progress in their own ways at their own pace. Also each person needs their own friendships, relationships, and activities outside marriage. No one person can or should try to entirely meet another’s emotional, spiritual, and artistic needs. Never expect another person to make you happy or fulfilled. That is up to you.

4.     Side by side, not face to face: I believe the most successful partnerships are ones where equally powerful beings stand shoulder to shoulder, working together, looking outward together. It’s not about being totally face to face, focused only on each other and expecting the other to devote themselves to you and fulfill your needs. It’s a matter of shared values, and perhaps shared projects. For many years, the shared projects will be raising your children. After that, if you have each done your inner work and partner work, you will have other shared projects. Hopefully you will not distract yourselves with materialistic indulgence, but rather with meaningful and purposeful activities that are healing and long-lasting, not only for yourselves, but for your people and communities.

5.     Call out, call in: Along with all the above practices, be willing to be called out, when your blind spots show up. Do your best to respond with, “I hear you. Let me think about it,” instead of getting defensive. No need to hash it out right then and there. Take your time. At the same time, do not accept put-downs, name-calling, gaslighting, and other forms of abuse. Vow to not stoop to that level. When you feel yourself and the situation you are in escalating, step back, step out, or whatever you need to do to de-escalate.

6.     Equity, not equality: Recognize the power structures that permeate your marriage. It is not exempt from racism, colorism, sexism, misogyny, toxic masculinity, classism, colonization, etc. Learn to recognize these systemic oppressions. Women’s rights are not the same as men’s rights. Do not try to treat everyone the same. Not everyone has experienced the same traumas and abuses, whether individually or intergenerationally. Let the marriage be “liberated territory.” Create the world you want to live in through your marriage and family.

7.     Something larger than yourselves: At our most difficult moments, may we all remember that we are but specks in the universe, and “THIS TOO SHALL PASS.” Everything is impermanent except God. When our problems seem big, may we gently remind each other to step back and take the longer view. It helps to be connected to the larger community as well as to the natural world, and not limit ourselves to our immediate surroundings.

I’m sure I’ll think of other things later, and that y’all will have things to add as well.

I love you both unconditionally and support you both unconditionally. I am here for y’all and your family. I am so grateful for everything y’all have already taught me. I look forward to growing together over the years.

much love,

Thursday, September 27, 2018

Transforming the Wounds of Our Elders and Teachers

I’ve been studying Iyengar Yoga since the mid-late 90s and teaching since 2001. I’m not a joiner of clubs and such, and tend to feel most comfortable as an outsider, continually drawn toward peripheries and in-between spaces. Even so, I found the practice of Iyengar Yoga so fascinating and compelling that I have devoted more than two decades of my life to it. Meeting BKS Iyengar, and beginning direct study with Geeta and Prashant Iyengar, in 2005, led me even deeper into the Iyengar Yoga world. It has become my life path, my spiritual path, and my path of livelihood.

And now, along with so many others, I am wrestling with deep heartbreak, dismay, and frustration that Iyengar Yoga has made the news this past month due to allegations of sexual abuse. Even though BKS Iyengar has not--nor anyone else from his family--been accused of sexual misconduct, Guruji’s name cannot help but be sullied.

The USA Iyengar Yoga community is especially reeling from the publicity surrounding a beloved Senior Teacher, Manouso Manos. Some say that Guruji should have banished Manouso during the first round of sex scandals, in the 1980s, in addition to the public reprimands and the insistence that he would only forgive him once. Some blame Guruji for Manouso’s alleged continuation of abuse. Some say Manouso, in his aggressive, bullying behavior, was only mimicking how Guruji himself behaved.

I will not deny that I have witnessed, received, and possibly even been the perpetrator of verbal abuse in an Iyengar Yoga setting. To be honest, I really do not recall being verbally abusive to a student, and I have never been called out on it, but I know that in the heat of the moment, when I am deep in “teaching brain,” especially when students are at a critical moment in an āsana, I sometimes blurt things out without premeditation, the same way a basketball coach will yell things from the sidelines at heated moments in a game. 

Teaching by shaming is part of the legacy of Iyengar Yoga. It’s not the only method, but one sees it arise in India, at the Iyengar Institute, and beyond. I recognize it as part of the legacy of colonization, as a symptom of Post Traumatic Stress Disorder. As a Korean, with parents who grew up under Japanese occupation, followed by American militarization, shame is practically our family surname. It was in the air we breathed, and in my mother’s breastmilk. I know from shame.

How would colonization even work without the tool of shame? Colonized people were taught to disown their heritage, culture, spirituality, values, and resources. We were taught to emulate and envy the ways of our colonizers. Those of us with family and geographical histories of colonization have internalized shame, and under stress and desperation, it re-emerges.

When Geetaji yells at students, and calls them “stupid,” I can hear my own parents at their most frustrated moments, reprimanding us children harshly in Korean. 

But I also see and hear Abhijata, a generation removed from her aunt Geetaji, and two generations removed from her grandfather, Guruji, and their traumatic, colonized pasts. Abhi consistently teaches with persistence and patience, grace and firmness, and has never, as far as I can tell, been abusive to anyone.

I have continued to study with Geetaji at every opportunity. I don’t condone verbal abuse, but I recognize where it’s coming from, and take it upon myself to transform it, as Abhi has, into more affirming practices. As such, we are transforming the wounds of our elders and our teachers. We are healing our ever-unfolding pasts, to open into a more compassionate and loving future.

I don’t emulate all the parenting practices of my mother and father, and their parents. I made a conscious decision not to discipline my children with shame. I can’t promise I always succeeded, but as God is my witness, I did my best. After all, when we fail to break the cycles of abuse that most of us have experienced in some form or another, we also fail to transform and heal the wounds of our elders.

Now, getting back to Iyengar Yoga in America, 2018:

If, as some claim, Manouso Manos is taking Guruji’s lead, and bringing his bullying into Iyengar Yoga in the USA and abroad, while mixing it with sexual predation, inappropriate touch, and sexual abuse, a tragic error is unfolding. 

Others claim exactly the opposite, that Manouso is a gifted and brilliant healer and teacher, who has saved their lives, even. They insist they have never been harmed by him in all their years of study.

Can we not respect both these statements as truth? Can we practice openness and suppleness not just of our muscles but of our minds and hearts? Can we acknowledge that, although thousands of students have never been harmed by Manouso, some have? Can I see beyond my own limited point of view, and empathize with another’s? Even if only 1/100 or 1/1000 claim to have been hurt, isn’t that enough to take action to ensure that it will never happen again?

It’s incumbent on us, the progeny of our human and imperfect teachers and mentors, to absorb the lessons given to us, and improve them. The best way to honor Guruji’s brilliance and genius is to bring his legacy up-to-date, #MeToo and all. We must uphold his name and teachings with śauca and svādhāya, by purifying the essence of Iyengar Yoga, and with unrelenting self-study.

Our method is one that embraces pariṇāma, transformation. We trust that we never stay the same, but rather, are ever-evolving. BKS Iyengar, in forgiving Manouso in 1990, asserted this belief in redemption and rehabilitation. 

Yet, we cannot permit one another to be harmed. When we stand by in silence, we forfeit the responsibility of healing our inherited wounds. We do our ancestors wrong, shortchanging them of their evolving legacies. We betray each other, break trust, and damage community. At this crisis moment, we have the opportunity to provide space for redemption while holding each other accountable through practices like Transformative Justice.

I will not cover up the sins of my father or mother, or of my teachers. I will make it abundantly clear to my children, grandchildren, and students, that they will not hide mine. Instead, I expect those who follow me to exceed me, glean the best of what I have provided, and take it to the next level. We must do no less for Guruji, by striving to become our most gracious selves, vowing to do no harm, burning up the seeds of inherited saṁskāras, and strongly holding each other accountable.

Wednesday, June 6, 2018

Letter to the Activist Community: Thoughts on Ableism

Dear Activist Comrades,

Over the past year or so, I have been Baba Baxter Jones’s live-in caregiver, and have also had the privilege of being present as his friend, engaging in many in-depth conversations about activism, ableism, and much more. I’m writing this letter to share some of what I have learned, and hope it can be useful to y’all. 

I was born in 1963 and have been an activist and organizer since the 1980s, working on campaigns to end wars, support women, dismantle racism, and much more. I moved to Detroit in 2013 from Milwaukee, WI, largely to be near Mama Grace Lee Boggs, and to join her caregiving team. 

However, not until this past year did I really begin to understand and confront the depth of my ableism (bias against people who are differently-abled). Similar to my feminist and racial awakenings in my 20s and 30s, recognizing my inner ableist has been extremely uncomfortable and disconcerting, and, to be honest, I have fought it every step of the way. The very same way a racist person clings tightly to their prejudices, I clung tightly to my ableist way of seeing things.

It took 6 months of living day in and day out with Baba Baxter for me to begin recognizing how much I was imposing my ableist standards on him. For these first months, I constantly argued with him about why he did things the way he did. After all, I raised 3 kids, was married for 26 years, and ran households and organizations. I knew how to do things. Why did he want things done differently? Why couldn’t he see the logic and sense and efficiency of my methods, and comply?

What I failed to do was fully understand his experience as a Black man living with severe disabilities. 

It took me months to understand the depth of his vulnerabilities and disabilities. Baba Baxter comes across as a robust, outspoken social justice warrior. He IS that person, but there is another side to him that he doesn’t indulge frequently, publicly nor privately, as a PSWD (person surviving with disabilities).

Baba lives with chronic pain, resulting from his 2005 car accident, and subsequent injuries since then. He doesn’t like to talk about his pain, because he says it makes it worse to focus on it. However, since I have been caring for him, I have been insisting that he tell me, so that I can take measures to help him alleviate the pain. Sometimes the pain is so bad he cannot get out of bed. He avoids taking pain meds because he hates the side effects, but is occasionally forced to. The chronic pain, which includes frequent headaches, prevents Baba from being as active as he would like to be, and can be preoccupying to the point that he cannot check anything off his to-do list. “Simple” things like returning phone calls sometimes cannot be completed. Disabilities can range from mental to physical, temporary or permanent, or severe or mild. Like others with chronic pain, he has good days and bad days, cannot predict what his condition will be, and must adjust daily.

Baba Baxter also is a survivor of Traumatic Brain Injury (TBI). Even though he seems cognitively capable in many ways, there are gaps that show up regularly. He has been diagnosed with early onset dementia, and he has short term memory issues. He also can become quite frustrated, irritable, and confused, and has lost some of the coping skills he used to have before his injuries.

For these reasons, expecting Baba Baxter to do what able-bodied folks take for granted, like keep track of several calendars, keep up with emails and texts, return phone calls, meet deadlines, and other organizing tasks, without assistance, is unrealistic. Baba’s POV as a disabled person is invaluable and absolutely necessary to the community, but to ask him to function independently instead of INTERdependently is ableist and unreasonable.

In this day and age, we are rightly expected to ask for what we need. Baba Baxter is very experienced at asking for accommodations, but it becomes extremely tiresome, and sometimes he simply does not have the energy. It’s the same way POC get fed up trying to educate white people. Baba gets tired of painting himself as a “victim” and talking about what he has difficulty doing and what he needs, only to experience the same responses over and over. He gets frustrated because people apply ableist standards, about how and when things should get done, and fail to adapt plans to make accessibility a priority. 

Furthermore, there’s a way in which we consciously or unconsciously attack PSWD, even in our movement spaces. Just the way the Nazis found PSWD threatening to society, we feel irritated by the presence, participation, and inclusion of PSWD. The accommodations they need are cumbersome, and their struggles come across as shortcomings, that resemble incompetence, weakness, inferiority, selfishness, or laziness. We have been trained in the culture and language of “equal rights” without necessarily being steeped in building equity. We don’t want to give someone extra help, and actually we could use some ourselves. In a culture that emphasizes INdependence instead of healthy INTERdependence, it makes us wriggle to see someone who is “needy.” 

Sometimes we regard Baba Baxter as a thorn in our sides, because he’s always challenging us to do better, and be more inclusive, accommodating, and accessible. It’s human to react with defensiveness when we’re asked to go beyond what we perceive as reasonable, or what we’re used to. Sometimes in such situations, Baba Baxter ends up being a target of conscious or unconscious antagonism and hostility. When we antagonize PSWD, we deflect attention from a lack of accommodations to victim-blaming. Instead of taking responsibility for adapting conditions for greater accessibility, we may want to blame PSWD, for creating difficulties themselves. 

I ask everyone receiving this to read this with an open mind and heart to uncover your inner ableist (no one in the world is exempt, including PSWD themselves), and be utterly honest about the range of feelings you experience in the presence of PSWD, and how your actions are shaped by these feelings. This is NOT to shame nor blame, but to help us understand how ableism works, so that we can dismantle it together.

I am aware that in Detroit, we have heard some of Baba Baxter’s requests many, many times, and some of us have become inured to them. Sometimes Baba Baxter’s requests are regarded as bothersome, or too much to ask, too difficult to fulfill. I understand this completely, and often feel overwhelmed myself. Yet, I have come to realize that Baba’s requests are not unreasonable; it’s the way our society and systems are set up that are unreasonable. For instance, it’s not at all unreasonable to request accessible transportation. Yet, the ableist society we live in makes it extremely difficult and costly to arrange this. Why do we allow bus and van companies to charge more money for accessible vehicles? If demand continually exceeds supply, shouldn’t transportation companies purchase more accessible vans? Aren’t these ableist policies? As activists, we must be the change we wish to see in the world. If we do not demand transportation for all, who will?

Creating an anti-ableist society requires creating a new culture of inclusion. To wait for PSWD to come forward and demand accommodations before we take the trouble to arrange it, is an ableist practice. That’s like a university saying, “We will create a Black Studies Department only when we have enough Black students who are interested.” No, the university should create the Black Studies Department anyway, because it’s the right thing to do, and very likely, will eventually attract the Black students to support it. Instead of saying, “we will have ASL interpreters if hearing-impaired attenders pre-register,” we should have ASL regardless, because it’s the right thing to do in creating a culture of inclusion. If our organizations provide accommodations, it sends the signal to PSWD that they are welcome. Why do so few people in wheelchairs show up at rallies, demonstrations, and direct actions? It’s not because they are disinterested. It’s because they don’t feel welcome, supported, or included. It may not have even occurred to them that they could come. Baba Baxter keeps showing up only because he is a born fighter, too stubborn to be deterred. 

All of this is to say that I believe ableism is the deepest and most difficult to uproot of the “–isms,” because it addresses our most basic issues of survival and dependency regarding life and death. Being with Baba Baxter means confronting our own fears of dependency, pain, and disability. If we are lucky enough to live long lives, we will all face some level of disability. Officially 20% of us in the USA are disabled, but I believe this is a low estimate, due to our ableist shame that prevents us from admitting we have a disability, which could include mental illness, chronic illness, and more. If we can come to terms with our own disabililties, we can begin to dismantle the inner ableist, become more welcoming of other PSWD, and demand the accommodations that we each need and deserve.

I hope this gives y’all some food for thought. Ultimately, this letter is not about Baba Baxter, but about all PSWD, and making our movements stronger for all. I offer this in love and struggle,
(Peggy Kwisuk Hong)

PS here are some excellent resources for recognizing and dismantling ableism:

Sunday, May 13, 2018

Flying with Baba Baxter

Being the primary caregiver for a Disability Justice activist = never a dull moment! 

Our latest project entailed a journey for the Poor People’s Campaign, from Detroit to Washington, DC. Baba Baxter Jones, a TBI and spinal cord injury survivor and wheelchair user, discovered that airlines may require some passengers with disabilities to travel with a “safety assistant.” This law would apply to certain cases of severe disabilities preventing the passenger from independently evacuating in case of emergency. In these cases, if a safety assistant was deemed necessary by the airline, the safety assistant could not be charged to fly.

Baba, who experiences dementia due to his brain injury, and cannot move his legs due to the spinal cord injury, fit 2/3 of the criteria (the third criteria being severe vision/hearing impairments). However, in extensive phone and in-person conversations, the airline refused to require him to bring a safety assistant. Instead, they insisted repeatedly that they were trained and fully available to meet his every need from curb to curb. They reassured us over and over that Baba would be able to travel independently with their accommodations. Left with no choice but to take them at their word, the campaign bought a ticket for me, knowing Baba would need assistance in DC, and we embarked.

The public paratransit van was over an hour late picking us up from home, but we still managed to arrive at the airport by 7:10am for an 8:25am flight. Airline representatives told us we could check-in curbside, then be escorted through security, to the gate, and onto the plane. Instead, it turned out the Wheelchair Assistance counter was inside the building, which required me to leave Baba with the transport van, go inside, and ask a Wheelchair Assistant to come outside and help us. This would have been impossible if Baba was alone. Rest assured, the beleaguered paratransit van driver was NOT interested nor required to navigate airport logistics, handle baggage, and stay with his client until the airline’s assistant was secured.

The airline assistants accompanied us through the arduous security process, which was complex due to all the medical equipment Baba carries and wears, which includes back and leg braces, a medicine bag, breathing machine, and much more. Since he cannot stand nor easily leave his chair, he needed a pat-down. The airline assistants stood by, but due to space constraints, were about 15 feet away, and could not be easily called. With considerable effort and my help, Baba “recombobulated,” and we were on our way.

At the gate to the plane, we were met by two men who were assigned to move Baba into the narrow on-board wheelchair and to his seat. Baba was told earlier by phone that the airline had a mechanical device to facilitate transfers. But when we asked the staff, they had no clue what we were referring to. As could be expected, the folks who are assigned heavy lifting, the most risky work, and probably among the lowest paid employees with the least control over their work environment, are almost always Black and Brown folks. When Baba checked in with them and asked them if they were prepared to take full responsibility for what they were about to do, they started to realize the risk involved in moving someone with severe spinal cord damage, and called in two more men to assist with the transfer. 

With considerable, cumbersome effort the four men lifted Baba from his chair onto the onboard chair and strapped him in. Getting him through the wide-aisled first class section was manageable, but the twist to get him into the narrower economy section required much jostling and squeezing, which was jarring and painful for Baba. The four men then awkwardly lifted Baba over the bulkhead armrest and into his seat. By this point, Baba was writhing with back and neck pain, breathing heavily, dizzy, and feeling humiliated and disrespected. He felt dehumanized, like a piece of luggage. Nevertheless, he was eager to move on and get to DC on the already delayed flight. Against his wishes, EMS was called in. They checked his vitals, he declined to go to the hospital, and we were on our way, an hour late.

For some mysterious reason, the airline had assigned the bulkhead seat for Baba. Every other row in the airplane has an aisle armrest that can move, but not the bulkhead. How much easier and safer it would have been to be in another row! We were befuddled about both the intial seat assignment (why wasn’t Baba given the option of being lifted over the bulkhead arm or being slid into another seat?) and the last minute lack of common sense of requesting a passenger in another row to trade seats.

By this point, Baba needed to relieve himself.

“Ummm, how do you accommodate wheelchair passengers who need to use the restroom???” we asked the flight attendants.

They stared at us blankly, then sorrowfully and guiltily. “Well, we have an onboard wheelchair, but we don’t have staff to transfer you in and out of your seat.”

Once again, the airline had given us a promise impossible to fulfill, that they would be able to accommodate his needs on the plane. Humiliated and dejected, Baba had no choice but to use his relief bottle under a blanket in his seat, in public view. The flight attendants were not even able to empty his relief bottle for him, because they’re not equipped to handle bodily fluids. What if he had had to urinate again on the flight?
Baba Baxter at the end of the flight to BWI
All the while, the full plane was silent and tolerant. The other passengers knew better than to express frustration, anger, and impatience  due to a delay caused by a person with severe disabilities. To fly at all requires financial means, and predictably the plane was majority white and white-passing folks. A few Black and Brown folks gave us empathetic smiles and props on their way out, but for the most part, the passengers did the white-polite thing, of averting their eyes, pretending Baba did not exist, and going on their way with suppressed frustration. 

The overwhelming impression I got was that they pitied Baba. He got lots of sympathetic side-glances. But what I wish they could muster is outrage! Anger that the airline handled the situation so poorly. Anger that Baba was manhandled, put in harm’s way, and injured. Anger that a passenger would be denied the ability to use the restroom. Anger that the airline's lack of preparedness and poor handling caused a one hour delay. Anger that our brothers are required to obey orders and commit harm to someone with disabilities. 

Until able-bodied folks are able to empathize our way to solidarity with PSWD (People Surviving with Disabilities), and demand change, corporations, institutions, and governments will continue their harmful policies and practices. Have you ever been on a plane with PSWD with paraplegia? Or are you such a person, who travels by air? I’m guessing most of us would answer no to both questions. We need to understand why this is so, and what we all can do to correct this injustice. Join us in our fight! 

Monday, April 23, 2018

Embracing Disability

“Isn’t it depressing?” my kind and compassionate activist-artist friend, Jung-In, earnestly asked, when I told her I was the live-in caregiver for an elder with disabilities.

She went on to clarify. “I mean, everyone wants to be around babies, but when you’re taking care of Grace [Lee Boggs] or Baba Baxter, don’t you get depressed?”

Grace Lee Boggs, one of our seminal revolutionary elders, died at age 100, and I was honored to be part of her caregiving team in her final years. Baba Baxter Jones, another Detroit revolutionary, uses a wheelchair, and has spinal cord and traumatic brain injuries. In asking her question, Jung-In was openly addressing the discomfort and resistance most of us experience when we are in the presence of PSWD (people surviving with disabilities), especially the highly visible forms of disability that require obvious accommodations.

She was revealing her own biases, and projecting her own feelings by asking the question. But don’t these feelings pop up for the rest of us, in our most honest moments?

I understood her question because I had wondered long and hard myself, if I could handle the task of being Baba’s live-in caregiver, before I committed to it in March 2017. Even though I had taken care of my parents in their final months and years, participated in Grace’s care, and devoted years to caring for my own three children, and even though, as one friend observes, caregiving is in my lifeblood, I wasn’t sure if I could handle this job. I didn’t know if I could be the live-in primary caregiver for someone needing significant, ongoing, day-to-day care, with mobility, nourishment, hygiene, emotional support, and medical and legal advocacy.

I’ve now completed Year 1 with Baba. To answer Jung-In’s question, NO, it’s not depressing.

Poster by ADAPT
Challenging, absolutely. Humbling, most definitely. Overwhelming? At times. But depressing? Never. In fact, I’d say that caring for Baba, as well as Grace, and each of my parents, has been inspiring, incredibly life-affirming, and profoundly instructive.

But I empathize with Jung-In’s question because it’s easy to see how some would run away from my position. Being around someone with a severe disability makes us squirm. We naturally feel uncomfortable. Our feelings can range from pity, to fear, to shame, to morbid curiosity, to admiration borne of guilt. 

Recall what it feels like to see a person who is homeless on the street. We tend to avert our eyes, we don’t know where to look. What if they ask for money? We might have a little change, but we’re trying to pay off our debt, or we have mouths to feed, or a mortgage to pay. We feel guilty because we have homes, at the same time we feel relieved that we’re not in their position. We might be woke enough to not blame them for their condition, but we hesitate to cut them so much slack that we could imagine ourselves in their shoes. It’s triggering to see someone so vulnerable, and we are eager to draw a strong boundary between them and ourselves. 

I’m recalling the 1994 winter Olympics. My 6 year-old daughter, Katja, saw a beautiful, elegant woman figure skater on TV, and she said, “That’s me,” her eyes glued to the screen. In the next moment, there was a commercial for an international humanitarian agency, soliciting donations, featuring a hungry, sullen, glassy-eyed child, meant to evoke pity. Katja, without skipping a beat, said, “That’s NOT me.”

Just like Katja, we consciously or unconsciously feel compelled to separate ourselves from the suffering, poor, needy, elderly, and disabled. “That’s NOT me,” we want to believe, and we move on to the next thing.

PSWD and those who are homeless are often treated similarly. Everyone professes to love and admire Baba Baxter, but only a handful actually show up to assist him. The degree to which we can show up, I’ve come to realize, is the degree to which we have come to terms with our own vulnerability and dependence. Those who have the capacity to be most present are those who have had the privilege of working through these issues. Maybe they’ve cared for loved ones, or are PSWD themselves. They’ve learned how to cultivate healthy interdependence, and how to ask for help. Often because they’ve received help themselves, they make it a priority to give it when needed.

If we have experienced suffering in our own lives, perhaps we’ve softened enough to be present for others. Grief, loss, injury, and illness give us the insight and fortitude to dismantle the ableist within. They also help us to realize that each of us is only temporarily abled, and that at some point, we are highly likely to be disabled ourselves, and dependent on others. The spiritual task is not to avoid becoming dependent, but to cultivate the capacity within to gracefully ask for and receive help.

For the first six months of caring for Baba, I resisted many of his requests. I didn’t understand why he wanted things a certain way, and I couldn’t identify with all his preferences. “Wouldn’t it be easier if ….?” I constantly questioned, until my ableist lens starting to thin out, and I started to see the world through his eyes. What I interpreted as a minor annoyance, was for Baba a gross injustice, or even a safety threat. It’s exactly the same way I may experience a racial microaggression, that to a white person would seem inconsequential. To an outsider, I could even seem unreasonable, hypersensitive, and delusional. Because the white person has not been in my shoes, they may not recognize racism, nor have they been harmed by it. In fact, they have no doubt benefitted from centuries of white supremacy, which makes it even harder for them to recognize it, much less dismantle it.

Ableism works exactly the same way. It’s not just about complying with ADA law. It’s also about the root causes and attitudes that perpetuate lack of access and rights. We begin to dismantle ableism when we say: that PSWD IS me. I could quite easily, in the blink of an eye, be that person. In fact, in many ways, I am already that person. We choose to be in alliance with PSWD, not out of guilt or pity, but because we cannot be whole without accepting the inevitable demise of our abilities, and the concurrent blossoming of interdependence. We are inspired by the life stories of PSWD, their resilience, sense of humor, resourcefulness, and the wisdom they have gained. They are leading the way for us to eventually renounce our own abilities, and embrace our own transformation to come.

In full disclosure, it's taken me decades of activism--beginning with feminism, to anti-imperialism/anti-war, to anti-racism--to finally come around to anti-ableism. Of course I always supported it intellectually, but to embody it fully and embrace it has honestly taken me decades. And I'm still very much learning, still constantly stumbling and finding blind spots.

I’m no martyr, not a saint, not a glutton for punishment, and I’m thankfully not depressed. I’m here in peace and love, to grow and learn every day. 

Thursday, February 8, 2018

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.