Waking Up through Lived Experience: What Dis/ability and Deafness Can Teach Us July 30, 2020By Alison Shapiro Affinity, SocialJustice, teachings By Tara Beech and Alison Shapiro If mindfulness means to be awake, what wakes us up? Practice, certainly. What else? It may surprise you to know that living with a chronic illness or biological challenge is also very effective way to wake up and stay awake. If attention is required to take every step or if severe pain is your constant companion, being asleep or distracted from this moment is very risky. We who are known as “dis/abled” or “hearing impaired” (whether or not we identify with these labels) live the daily experience that while the challenges with which we live can use enormous amounts of energy and concentration, they are also moment-to-moment opportunities to practice. To be effective for us, it is often necessary to nuance and expand traditional mindfulness tools as they are taught and make space for what it means for each of us to live and practice exactly as we are. In that space, mindfulness comes alive. I, Tara, the Sangha Manager, live with severe chronic pain from fibromyalgia. Establishing a sitting meditation practice has been challenging for me. The pain I experience feels like a burning sensation blanketing my entire body. When activated, I become hypervigilant to sensory input and concentration meditation only exacerbates the pain. Thus, much of my practice involves distinguishing between hypervigilance and true Presence. This effort requires a significant level of focus that can happen more easily “off the cushion.” When I do meditate, I use several strategies to work with feeling overwhelmed. Opening my eyes and focusing on an object external from my body can feel stabilizing. It can also feel stabilizing to focus my attention on a neutral or pleasant bodily sensation or to introduce gentle movement, such as swaying. These gestures help take the focus off escalating pain. However, much of my practice centers on cultivating the energy to be present in the moment. In fact, the first thing I do when I feel reactive is to ask myself if I am lacking in energy. When the answer is yes, I attempt to pause or reduce my effort until I can return with more resources. This work requires a great deal of patience. It also requires an understanding that this is wise, kind action and not a lack of discipline. As my capacity to cultivate energy has grown, so too has my ability to establish true Presence. The strength of my practice would not be what it is today without this work. I, Alison, the Sangha Facilitator, post-stroke live with movement, balance and coordination challenges. Walking is a conscious act for me. If do not pay attention to how my body manages each step, I may fall. That means I have been doing walking meditation day in and day out for 18 years. I must pause and be awake and aware whenever I transition from sitting or lying down and wherever I move through space. If I am practicing with others doing walking meditation, I generally will need to modify whatever instructions are given to meet the way in which I can move safely. If those instructions include walking on an uneven surface such as grass I may need either to do a carefully managed parallel practice on a hard surface away from the rest of the group, or I may require time and opportunity to access an assistive device or request a person to help me. Doing walking meditation all day every day has opened opportunities for me to practice patience, kindness and self-compassion in a very deeply embodied way. And, like Tara, it also has been a practice of discerning how to move from hypervigilance into the sweet richness of spaciousness and Presence. From my perspective this daily awareness practice has become gift. At first, being human, I resented and resisted the walking limitations I experienced but I have come to see the possibilities inherent in the constant reminder to be awake. To create the safe space in which we can explore and shape practices that will serve our community, the Affinity Sangha for People with Dis/Abilities and Deaf People was created in the fall of 2019. This group name was chosen after much consultation to be as inclusive as we could make it, but it is only a label. We are all different. Some individuals may not identify as having a “dis/ability”. Deafness or hearing impairment is often viewed as a cultural difference rooted in the use of a non-dominant language. What we all share that the label does not capture, is a profound respect for one another and for the strength and kindness it takes to craft our lives. This Affinity Sangha meets online to maximize ease of accessibility, and is American Sign Language (ASL) interpreted. We began to meet this way before the pandemic and will continue to meet this way once the pandemic has ended. Together, we have cultivated a sense of connection and opportunity for growth as we learn from and teach each other. It is this connection and growth, which stems from our unique experiences, that empowers this group, individually and collectively. Traditionally, the perspectives of people with disability, deafness, chronic illness, and injury have been underrepresented. That said, we, as a society, are collectively waking up, eager to listen and learn about experiences outside of dominant culture. With this momentum, we — regardless of how we define our own abilities — have an opportunity to expand our understanding of the Buddhist practice through the lens of this Affinity Sangha. Alison Shapiro has been practicing Vipassana meditation since 1985 and has been teaching since 2008. She is the survivor of 2 brain stem strokes and lives the power of these practices in shaping a life post injury. Alison is the creator of the Mindful Stroke Recovery course, the author of the Mindful Stroke Recovery Workbook, the author of the book Healing into Possibility, and the co-producer of the film What Now? Tara Beech began her Buddhist practice in 2012 and has studied under various teachers. She is the manager of IMCW's Sangha for People with Dis/Abilities and Deaf People and she serves on IMCW's Diversity, Equity, and Inclusion (DEI) Committee. She is an attorney who has specialized in issues related to disability. The Sangha for People with Dis/Abilities and Deaf People meets the second Monday of each month via Zoom. For more information, please contact Tara Beech.