'How poor are they who have not patience'

By Louise Kinross

Patience.

It's a quality that doesn't rank high in our competitive, consuming, instant-gratification culture. We want things, and we want them fast.

Some families reminded me recently of the importance of patience in raising children with disabilities.

The first was Pia Pearce, mother to Kevin Pearce, an American snowboarder expected to win gold at the 2010 Olympics until a crash nearly killed him, severely injuring his brain. Kevin was hospitalized and had to relearn everything—to swallow, walk and talk. He was unable to return to competition. It’s common for parents of children with traumatic brain injury to mourn the child they knew pre-injury.

“I didn’t see any value in going there,” Pia told me in an interview. Because of her experience raising her son David, who has Down syndrome, and two boys with dyslexia, “I had learned, over the course of time, a lot about patience and acceptance. Because I’ve had so much experience with accepting differences, my focus is on acceptance.”

That stuck with me and I wondered how it could apply to my experience raising my son with a rare genetic condition.

Last week I interviewed Joyce Scott, the twin sister of Judith Scott, a world-renowned fibre sculptor who's described in this New York Times piece as a “complex and brilliant artist and person.”

Judith—who had Down syndrome, was deaf and was institutionalized for over 30 years—didn’t find her gift till her mid 40s, when Joyce brought her to San Francisco and became her guardian. Joyce enrolled Judith in Creative Growth, a community art centre for adults with disabilities. At first Judith didn’t show any aptitude or interest, Joyce said. “It’s a place where they don’t teach art, they provide materials and allow people to explore them. Judy was there for about two years and she wasn’t liking drawing or painting or ceramics. We thought ‘Maybe this isn’t the right place for her.’”

One day Judith was sitting at a table where an artist was using textiles and “she took some of the materials—the threads and yarns—and found some sticks and she wrapped them and made this amazing sculpture that looked a bit like a Native American worship symbol and everyone was astounded,” Joyce recalled. “Once she started fibre sculpture, you could not get her to stop. Sometimes her fingers would bleed because she worked so many hours and so hard on it.”

Judith’s work, which combines fibre and found objects like an umbrella, branch, bicycle wheels and plastic tubing, has been shown in museums around the globe. Ten years after her death, “Bound and Unbound” is a 60-piece exhibit at the Brooklyn Museum in New York until the end of March.

Judith’s story made me think about how impatient we typically are—as families and professionals—when exposing children or adults with disabilities to activities or work. How often do we encourage a person to try something like art—on a daily basis, for two years, as Judith was—when the person doesn't show any affinity for it? Rarely. We're more likely to assume the person isn't capable and insist that they move on. I think Judith's story is exceptional because without her unhurried time at Creative Growth, her talent would have remained hidden.

“I feel so strongly that people who may look different or appear to be somehow ‘less than’ or who are labelled ‘less than,’ have great giftedness and great potential,” Joyce said. “I see Judy as a kind of a model for that. Who would have thought that someone labelled as profoundly retarded and deaf and institutionalized for most of her life had this amazing greatness within her as an artist? What she needed was an opportunity, a place, and respect.”

I think the key word is respect. Because Joyce respected her sister, she continued to support her participation in the art program even when Judith didn’t appear to be making gains. When you respect someone, you give them time. You give them latitude. You believe they have worth. You value them as they are. 

I saw the benefits of patience in my own life recently. My son has been working at two high-school work placements. He has significant disabilities and a lot of growing and maturing to do. So this has not been without bumps. I reached out by email to the owner of one of the businesses to ask how things were going. 

In his response, the owner began by describing our son as “an awesome individual.” He went on to say that they had seen “slow but real improvements” in our son's work, behaviour, focus and attention. He addressed one of our son's challenges and his need to improve. He finished off by saying that our son was an asset to the team. 

I read this message to my husband and we teared up. We agreed that we had never had a message like this about our son before. Usually the feedback we receive focuses on the negative. And that invariably leads us to question our own weaknesses as parents.

What I took from this business owner's message was that my son was being given time to develop and improve at his work. They were being extraordinarily patient with him. Despite his disabilities, they saw his value. This made my husband and I feel more hopeful about our son and more motivated to support him and stay positive about his experiences.

It made me wonder why we don't talk more about the benefits of patience in parenting kids with disabilities and the intrinsic self-worth of children (distinct from ability). Is it possible that we're missing something in our focus on goals and outcomes and hurrying people along in their development? Are we too quick to judge people incapable? And resign them to the margins? Maybe we could all benefit from more patience.

The photo is of an unnamed sculpture from Judith Scott's Bound and Unbound exhibit at the Brooklyn Museum. Please click on it to see the full image. The headline above is a quote from Shakespeare's Othello. Look for a more in-depth interview with Joyce Scott in the winter issue of BLOOM next month.