“Our society is geared to growth, development, and progress. Life, for most of us, is a race to be won. Families are about evolution: at a certain age, children are encouraged to leave home, get married, have children of their own, move on in their lives. But people with disabilities have no such future. Once they have reached a certain level of development, they are no longer expected or encouraged to progress. There is no “promotion” for the disabled and what forward movement there is seems to be either erratic or cruelly sped up: many people move quickly through childhood to adulthood without passing through a period of adolescence; others age quickly. Our society is not set up to cope very well with people who are weaker or slower. More important, we are not skilled at listening to the wisdom of those whose life patterns are outside of the social norm. There is a lack of synchronicity between our society and people with disabilities.” Jean Vanier, Becoming Human, (p. 45-46).
Jean Vanier founded a community in 1964 called L'Arche for people with intellectual disabilities. Not having a disability himself, I was shocked with the accuracy by which he could describe the developmental process that people with disabilities experience. The phrase “cruelly sped up” jumps off the page at me. So often, I feel like I experience life as an “old lady” in a young woman's body. I plan my outfits around supportive footwear, park in accessible spaces, and am conscientious of falling in public. I know what it is to wake up every morning with stiff muscles, live with consistent low-level back pain, and find relief in slow-paced activities like stretching. I wear reading glasses, have grab bars installed in my bathroom, and would prefer not to drive, especially at night.
When I think about these personal characteristics, it would seem as if the timeline of my entire life has been thrown off track—both through the experience of delay and rapid expedition. I was born prematurely at 29 weeks, but didn't walk until I was two. Due to challenges and disappointments I endured during childhood, I spent many of my developing years simply waiting to become an adult. My brother remarked to me once in passing, “You skipped childhood.” Others said to me in my teen years, “You think like a adult.” This feeling of being out of sync has been a struggle. Certainly the hardest people for me to relate with have been my own peers—fellow 20-Somethings.
In a decade so often characterized by marriage and family, I often watch the progression of my peers with observant curiosity. Will I get married some day? Maybe. Dating presents a unique set of challenges and opportunities for those with physical disabilities. It takes a special person to see deeply into the heart and soul of another human being, past an imperfect exterior. I believe we all long for this rare type of insight—and for this I am willing to wait.
Will I have children? My two little nieces bring me more joy than I can express. But, I already struggle with fatigue. I cannot imagine expending the amount of energy necessary to sustain my life while nurturing the life of another. If I were to ever lose my balance and fall while carrying a infant, I would never forgive myself. Children move with such speed and agility. My reaction time is slow and my gross motor skills are compromised. What if a toddler were to run out into a busy street or jump into deep water where I couldn't rescue them from harm in time? I'm just not certain, for very practical reasons, that parenting should be in my future.
So, what do I do with the knowledge that my life's trajectory may not be following the “normal” curve? What if my “promotion” looks different than my 20-Something peers? In a world obsessed with conformity, I believe people are crying out for others to notice and value their unique individual and creative identity. I think the invitation here is to have the courage to be myself—to walk my own path, validating other's experiences, but not comparing it to my own in order to assign value. One person's story is not greater than an other's. Let's celebrate the unique role will all have to play!
Have you ever felt like your life was off-track? Do you find yourself comparing your story to an other's story and assigning value? How can you intentionally engage with other people whose life may not be on the “normal” curve in order to broaden your perspective?
Vanier, J. (1998). Becoming Human. Mahwah, NJ: Paulist Press.