“A society will be judged based on how it treats its weakest members…”
- Pope St. John Paul II
DISABILITY IS A FACT OF LIFE. It comes about through circumstances that range from injury and illness to genetics and aging. It can affect us all.
Cultivating a society that helps people succeed to the best of their abilities, regardless of their challenges, is a benefit to every human being.
Discovering Christ in Relation to One Another
“No disability or dictionary out there is capable of clearly defining who we are as a person. It’s only when we step out of that labeled box that our abilities begin to be fully recognized, giving us a better definition of who we truly are as individuals.” - Robert M. Hensel (Guinness World Records Holder for longest nonstop wheelie in a wheelchair - 6.178 miles)
At a United Nations gathering in early 2018, the Holy See brought together a group of panelists to highlight the value of disabled persons in our society. A video was presented that told of a woman who was pregnant and had just discovered her child would be born with Down syndrome. She emailed an organization for the disabled, saying, “I’m scared: what kind of life will my child have?” Their response was to compile video clips of people with Down syndrome answering her question.
From different places around the world and in different languages, they took turns delivering pieces of the message written in subtitles beneath their beautiful, smiling faces: “Dear future mom, don’t be afraid. Your child will be able to do many things. He’ll be able to hug you. He’ll be able to run towards you. He’ll be able to speak and tell you he loves you.” They joined together in telling of all the things a child with Down syndrome would be able to do, including work, travel, and independent living, adding, “Sometimes it will be difficult. Very difficult. Almost impossible. But isn’t it like that for all mothers?”
Tears flowed at the U.N. as mothers joined their children on screen, one at a time in each different location around the world, mother and child hugging each other as the final words of the message were delivered: “Dear future mom, your child can be happy. Just like I am. And you’ll be happy too. Right, mom?” Each in turn, they looked to their mothers, whose smiles and warmth answered the question, “Right, mom?” This short video message beautifully captures the impact people with disabilities have on the world around them. The mothers radiated joy because of the bonds they had created with their children. This is how Christ has called us to live: to care for one another. In so doing, we discover the joy of God’s love in our relationships with each other.
Learning to Read a Storm
“Disability is an art. It’s an ingenious way to live.”
- Neil Marcus
The play Storm Reading is written and performed by Neil Marcus, who has a neurological movement disorder called generalized dystonia. Another performer portrays a character ignorant of issues relating to disability and asks Marcus what he likes to be called. “I was wondering, Neil,” he says, feigning an awkwardly forward and inappropriate manner, “how it feels to be, oh I don’t know, handicapped? Which word do you prefer? Disabled? Physically different? Crippled?”
Marcus leans in, struggling to articulate his words, and then finally answers, “A person.”
Having grown up as a child who loved outdoor physical activity, Marcus developed generalized dystonia at the age of eight. It’s a condition marked by muscle contractions resulting in abnormal fixed postures and twisting, repetitive movements. His love for living an active life continued even after the symptoms of dystonia began, so he went on to become a performance artist, channeling the chaotic energy of his condition into inspirational dance routines.
In one Storm Reading monologue, spoken for him by a narrator, Marcus relates disability to the cycle of death and rebirth in nature, noting that some people see failure alone when they see disability. Analogizing himself and his condition to a storm, Marcus explains that people with disabilities can teach us how to recognize the seeds of life within the stages of decay in the world.
“Some people hide from storms,” he says. “They close their shutters, doors, and blinds. They steep themselves in their own darkness, and rob themselves of a tumultuous journey and its exhilaration. But some people, when they see my twisted frame, my dystonic disarray, they embrace themstorm, and their eyes light up and they rush to hug me as a long lost brother as if embracing the storm was food for their souls. I can teach you to read a storm.”
Fidelity to the Weak
“A true friend knows your weaknesses but shows you your strengths; feels your fears but fortifies your faith; sees your anxieties but frees your spirit; recognizes your disabilities but emphasizes your possibilities.”
- William Arthur Ward
In 1964, a Canadian ex-naval officer named Jean Vanier paid a visit to an institution in France for people with developmental disabilities. Horrified by the conditions he witnessed, Vanier invited two of the residents to leave the institution and come live with him in the town of Trosly-Breuil in Northern France. Soon afterwards, Vanier founded L’Arche, a community dedicated to fostering the gifts of people with intellectual disabilities.
In Summer in the Forest, a 2018 documentary about L’Arche, Vanier contrasts the institution he visited as a young man with the community he was prompted to form. “There were two dormitories… forty beds…something like eighty men,” he says. “There was shouting and violence - a lot of screaming. I met there a man who had been locked up in a cellar for years. I can still see his face, so filled with complete, if you like, madness. So there was a feeling of horror.”
In contrast, Vanier calls L’Arche “a small community, the place where humiliation had been changed into fun.” Speaking about one of the first L’Arche residents, Vanier says, “Philippe, who had been crushed, could start flowing and living and flowering, and as you laugh together, as you have fun together, barriers drop, and so it was a place of immense fulfillment, of joy, of celebration, of laughter, of fooling around, and in many ways I discovered something about myself, which was to become a child.”
Since its founding, L’Arche has grown into an international movement with 147 communities in 35 different countries around the world. Summer in the Forest focuses on life as it is today in Trosly- Breuil, where Vanier still lives as the revered elderly founder/philosopher in the thriving community where he and his friends take frequent excursions during warmer months along paths in the surrounding woods.
One of the L’Arche residents featured in Summer in the Forest is David Surmaire, a 33-year-old man with Down syndrome whose playful approach to life and love of American Western movies enlivens Trosly-Breuil. Another resident is Michel Petit, a 75-year-old man with a history of anger management problems due to abuse he suffered in an institution. Michel vividly recalls surviving the bombings of his nearby hometown of Amiens during World War II. Following Michel on a day in which he visits a Holocaust memorial awakens the viewer to the depth of his personality and the healing that has taken place for him in his time at L’Arche.
Having suffered a brain injury in childhood, Michel struggles slightly to articulate his thoughts, which nonetheless serve as an eloquent tribute to the life-changing experience of L’Arche. “Jean Vanier is a man who loves us very much,” Michel says. “He loves me very much, because the words he speaks are sincere…Jean taught me about myself, about feelings, about the sensitivity of others. L’Arche is about welcoming people.”
The quiet happiness of Jean Vanier, in his late eighties at the time Summer in the Forest was filmed, is a testament to the joy and wisdom that awaits all those who welcome people with disabilities into their lives. Talking about what he has learned in over fifty years of living at L’Arche, Vanier says, “These were people who were at the bottom of the ladder of social status, and they taught me about what it means to be really a human person and to learn to love and let the barriers down….So often we’re controlled by fear, which then becomes anguish, and anguish then becomes anger, but if you move from anger to compassion, the road then becomes fidelity to the weak.”
On a day devoted to persons with disabilities in 2016, Pope Francis denounced the idea that “sick or disabled persons cannot be happy, since they cannot live the lifestyle held up by the culture of pleasure and entertainment...How many disabled and suffering persons open their hearts to life again as soon as they realize they are loved! How much love can well up in a heart simply with a smile!” “The world does not become better,” the pope continued, “because only apparently ‘perfect’ - not to mention fake—people live there, but when human solidarity, mutual acceptance and respect increase... Differences are a richness because I have something and you have something else and by putting the two together we have something more beautiful, something greater.”