My sister Amelia has an intellectual disability and co-occurring mental illness. While she often evidences an engaging sparkle and zest for life, she is prone to dark moods and dangerously self-abusive tantrums. Balancing independence and safety is a challenge. Growing up, my parents were undeterred by a house full of Amelia’s blood stains, broken furniture and their shattered nerves. Our family resisted institutionalization by fighting fiercely for Amelia’s right to community inclusion. As an adult, I have come to believe in what Robert Perske terms as the dignity of learning via everyday risk. Although support from our immediate community was inconsistent, it played a vital role in Amelia’s ability to live at home and learn via everyday risk – although chaos was commonplace.
Each August, our family’s sojourns to rural Maine were a respite. Schooled by my pseudo-survivalist parents, we shunned electricity and plumbing to embrace the risk of living off of the land. We learned to catch bait, find edible berries, conjure a fire during rain and navigate the woods by sun. Expected to rise to the occasion each in our own way, Amelia’s confidence bloomed, an irregularity at home. Now, Amelia evidences increasingly aggressive behaviors and shrinking self-confidence as she is often shunned by the community that reared her. She knows the cops on a first name basis.
We still go to Maine each year. Miraculously, Amelia creates rituals for herself; uncharacteristically rising at dawn for solo “quiet time” via canoe; hours spent picking tiny wild blueberries. Last year, focusing on her ability to concentrate, my father taught her how to clear a path along the shore to an otherwise-inaccessible blueberry-picking spot. Amelia caught on, doggedly trailblazing her own way, with limited guidance. Her dark moods were sparse – she seemed to embody a clearer sky, calmer soul. We celebrated this “Maine effect,” but the magic vanished on the road home.
This year, I floated in the canoe, listening to Amelia’s brush-clearing. She was so engaged, exuberant. I sat up fast, almost capsizing, without the regular social strictures (don’t let her access “dangerous tools”), Amelia was safe, happy, her own person – contributing to the world. As if reading my mind, Amelia called out: “I LOVE Maine! When will you walk on my path?” Her words provided bittersweet clarity – I had yet to walk on her path – metaphorically or otherwise.
Paddling to shore to embark on that path for the first time, I wondered “Can we clear a path from the blueberry patch on into “real life?” While this question remains largely unanswerable, my canoe-based “a-ha moment” guides me now in supporting Amelia – who has just successfully advocated for more “nature trips” back home. The aggression still occurs, but there are more bright spots. I believe in extending “the Maine effect” – in fighting to implement the dignity of learning via everyday risk – even for people with Amelia’s challenges. The benefits may be elusive, but they are immeasurable once you find the right path.
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