It’s interesting when the schedule of what’s going on brings two events together and there’s a serendipitous connection of ideas that happens only because one doesn’t want to miss something that someone that one doesn’t know has scheduled for a certain day, without any sense of one’s own life. Last week I went to a Michael Kendrick lecture about the ideas of “Quality” and “Innovation” in our field of supporting people with disabilities to be part of their communities: what are we really talking about when we bandy these terms around? That evening there was a lecture on “Modern Buddhism” by Buddhist nun Gen-la Kelsang Dekyong, the General Spiritual Director of the New Kadampa Tradition which I also didn’t want to miss.
There were some fascinating resonances. We can think of Buddhist teachings as science, said Gen-la Kelsang Dekyong. What is science? It is the action of attending to reproducible experiments – we can prove that something will happen each time we do it, no matter when, no matter where, no matter with whom. For example, if you put sugar into your coffee it will be sweeter. More sugar = more sweet. The very charming Buddhist nun is a great story-teller: “We don’t say ‘Oh, watch this – I put sugar into my coffee and it got sweeter – I wonder what will happen when you put sugar into your coffee?” or “I’ve been putting sugar into coffee and making it sweeter, I wonder what might happen if I put it into my tea?” We can rely on our experience of sugar dissolving into liquid to allow us to predict what will happen wherever we go, whomever we are with, whenever we try it.
That morning Dr. Kendrick said something like, “One of the things we know from experience all over the world, in many different situations, is that flexibility works better for people – it allows changing needs to be supported and changing goals to be priorised, and yet almost all models of support for people with disabilities depend on fixed staff schedules, fixed budgets based on a snapshot of needs, fixed program sites and fixed assumptions based on an annual plan. In between annual plans we assume everything will be the same. If you want a change it might, or might not be possible, to make a change at your annual plan – depending on how attached the agency is to the building, the staff schedule, and the possibility of flexibility” (he said it much better, but that’s the gist).
Gen-la Kelsang Dekyong’s talk was about the Medicine Buddha and she said something like, “The ‘medicine’ isn’t in the teachings of Buddha,” she said, “it is in putting those teachings into our lives – it is in taking the medicine, just like we take medicine out of a bottle and take it; it doesn’t help us in the bottle – we can take into our lives the two great themes of Buddhism which are compassion and wisdom, these two foundational ideas which we know, just like we know sugar in coffee makes it sweeter, will improve our lives and the lives of those around us. If we have compassion for ourselves, compassion for others – even if they are different from ourselves, compassion for the world – things will get better. We know this. We can be kind and peaceful and good to each other and all things will improve.” Again, she said this much better and I’m giving the gist of what I heard.
A “right action” that we know works, was moving people out of institutions and into homes where they have access to others who can keep them safe and hopefully enter into relationships in which both parties are strengthened and enriched by the gifts of the other. My friend with Down’s syndrome is a great navigator and introducer. I have trouble finding my way and I often feel quite shy in new situations: he gets us there on time (though he can’t tell time), finds a parking spot (that he remembers from a previous visit years ago) and introduces me to everyone in ways I would never think of. He’s also a visionary chef, but he needs me to read, figure out what we need to make the dish, and work the stove. When it is all done, he is a great server and host. If he thought I was in trouble, if, for example, I showed up with a black eye, he’d want to know what happened and he’d make sure I was okay, and vice versa. A thing I think about even more these days is that if we were talking and he had the sense that I aspired to something I wasn’t sure I had the capacity to do, he’d encourage me to share my dream and he’d help me figure out how. We are both safer, enriched, more capable and have more capacity to do good things because we are both in community. Anywhere that people have authentic, good relationships with family and friends this is true. It is another scientifically proven fact.
I was telling a friend that when our daughter, who has autism, graduated and aspired to a “Princess dress” including sparkly slippers and a tiara, we didn’t know what to do. I was ineffectual. Where do tiaras come from? Do people really wear those kinds of dresses? What I knew, that a nice simple dress which might be wearable to other occasions over the next years would be sensible, didn’t matter a fig. And suddenly other people jumped in – moms and daughters and co-graduates and friends – they took her for lunch, they looked at magazines about what to wear for grad together, they shopped, they compared tiaras, they wondered where to find earrings that matched, they made a budget, they practiced wearing high heels. It was as if there was a great circle of people around us who had been waiting for a signal and the signal was my ineptitude. My friend said, “It’s always been an axiom of community living that if we want to connect people we need to stop knowing everything and create conditions under which people are needed.” So that would seem also to be a scientifically proven fact in our field. And, ever since, I have wondered who I have excluded from our lives by my own proficiency (and the pretense of proficiency – those moments when one feels the need to move forward in a kind of expert way, but not really knowing the answers – who might have stepped forward with better answers if I’d just stood still for a moment and looked puzzled and inept?).
So there are a few things we know in the same way we know sugar makes tea sweet. But we need to put the sugar in the tea, not just talk about it, not just have it be part of the choices, but actually spoon it in and stir things up. In the same way, the idea of “flexibility” is not what’s needed in our field, but the ingesting of the idea, the taking of the “medicine” so that flexibility – which is essentially the authentic asking of the question “what do you want?” of someone with a disability, and respecting their ability to make and communicate choices, and listening with good intention (as Buddhists would say) out of right relationship (I will be trustworthy and honorable in all my dealings) and then embarking on “right action” without fear.
Or, as Buddhists say in their constant prayer, including those with disabilities in this intention: “May all beings have happiness and the causes of happiness, /. . . / May all come to peace without too much attachment and too much aversion, / And live believing in the equality of all beings.” Buddhist or not, these are the kinds of ideas out of which the idea of a non-profit service grew from the idea of “charity.” At some point this intention turned into the assumption that what was needed were services, and that those who had begun with the idea of doing “good works” might be the best placed and positioned to provide services.
It is interesting just to play a bit with these words – what happens if we change “services” to “good works,” or to “education,” or to “helping you organize the supports you need in your life” (instead of assuming we are the supports people need in their lives). What happens if we think really big and turn “services” into “compassionate response.” What happens if we think really small and not about what someone needs for the next year, but what do they need right now, in this moment. What happens if we rethink our very intentions and question the ways in which what we do has derived from medicalised models and educational systems? If we stop sentencing people to lifetimes of hospital-like responses and an endless cycle of classroom-type assumptions?
Our evening with Gen-la Kelsang Dekyong began with a brief meditation in which she asked us to be present and then showed us how (science!) by leading us in a very simple meditation – breathing in white light and sending it to our hearts and breathing out black smoke and letting go of our need for attachment (control). Within a very few minutes we could listen in a whole new way. We were present. What happens if we begin our meetings for and about and with people with disabilities by spending a few minutes focusing on listening, instead of shuffling our papers and priorising our endless lists of what matters most (to that person? To the system? To the funder? To the program evaluator?) and playing triage with someone’s life?
So there are some things which we “know” as reproducible “scientific” truths in all of this – sugar makes coffee sweeter, we can listen better, and flexibility works better for people than being constrained, medicine isn’t in the bottles or the pages or the hearing, it is in the ingesting and doing, ineptness creates conditions for community, good friends can help each other.
You can read more about Dr. Kendrick’s work here, under “publications.” You can read more about the Tilopa Buddhist Centre, Gen-la Kelsang Dekyong and other teachers, and the book Modern Buddhism: The Path of Wisdom and Compassion by Geshe Kelsang Gyatso, here. The book is available for sale but the author believes the information is so important that he wants it to be available as a gift to everyone, so there are links leading to free download sites where you can get it as an e-book.