In August, my family and I will spend five days at a Joni and Friends Family Retreat in the northern part of our state. This particular organization has family retreats all over the nation in order to give disability-affected families encouragement and a respite.
Joni and Friends was founded 30 years ago by Joni (pronounced Johnny) Eareckson Tada, who became a quadriplegic in the ’60s following a Chesapeake Bay diving accident. Her autobiography “Joni” and other books she authored have sold millions of copies. She has been known worldwide for her mouth art, writing, public speaking, radio show, advocacy, and television show appearances, such as Larry King Live.
This will be my tenth year. For the first seven years, we attended as guests, and the last three as volunteers. This year, before the retreat families arrive, I will help train volunteers in “disability etiquette,” i.e., how volunteers can respectfully interact with retreat families affected by disability.
One common disability this year among our retreat families will be autism. Although the retreat will serve families having adults with disabilities, most families will have children with disabilities. In part, we will have two blind adults, other adults with disabilities ranging from multiple sclerosis to traumatic brain injury, and children with disabilities ranging from cerebral palsy to spina bifida..
The latter disability, spina bifida, which has been the nation’s most common, permanently disabling birth defect, affects about one person in 2,000. It occurs when the spine doesn’t develop completely in the first few months of pregnancy. Our first child was born with spina bifida in 1995.
One positive aspect about retreat for me over the years has been the acceptance we receive and give as a family. At times, but not with ours, some families affected by disability feel like social outcasts, never quite able to adapt to the stares and awkward public moments. They feel others think they have “cooties.”
At our family retreat, and at some hosted by other nonprofit organizations, some families have felt accepted for the first time by someone outside their family unit. These friendships can then grow year to year and retreat to retreat and begin helping heal wounds.
Accepting a person with any disability—from dyslexia and schizophrenia to muscular dystrophy—in large measure simply means respecting that person as an equal and trying to embrace what they can do rather than what they can’t.