November 16, 2009

On October 15, I wrote on the interesting perspective of Anne Ruggles Gere, who writes on the visibility of disability in her own daughter, Cindy. During the lecture this week, we had the privilege of hearing three parents’ perspectives on their children’s disabilities. This lecture was certainly the most poignant of the semester. Listening to their experiences and witnessing their courage and good humor was incredibly powerful; I will summarize each of their stories to the best of my ability.

Glen told the story of John, her twenty-year-old son with Down syndrome. Glen was told that John would be born a “vegetable” and struggled with “being told of his disabilities straightaway.” John attended mainstream school until the age of seven, at which point he transferred to Riverside, where he quickly blossomed. She describes John as having a wonderful sense of humor and as being very stubborn. Despite the initial prognosis, John can walk and talk, and is even attending college classes to acquire living skills.

Lisa described her ten-year-old daughter, Gemma. She presented Gemma’s story as one in which a “special need isn’t always immediately apparent.” Lisa explained that Gemma was born “completely normal,” though complications arose early in her life. Gemma was thought to be deaf as a toddler, but tests proved this initial theory wrong. Lisa reported being “devastated – because, as a mother, I knew something was wrong.” Upon Gemma’s two-year check-up, her physician told Lisa that she was being an over-anxious mother, as Gemma was correctly developing in regards to cognition. When it was discovered that Gemma had autism, Lisa said, “I can honestly say I grieved.” She grieved because Gemma wouldn’t be like her sister, saying, “My little girl is not going to be like everyone else and that was that.” She remembers the confusion she felt, having been completely unaware of the complications of autistic spectrum disorders. She was left knowing only that the outlook was bleak, but the future had no form that she really understood.

The third mother, Sarah, then described her fourteen-year-old son James. James survived a slew of heart complications at birth – a reimplanted core artery, a damaged mitral valve, and eighteen subsequent months of heart surgery, thirteen and one half weeks of which he was on constant life support. Sarah also addressed a “grieving period” in a courageous, matter-of-fact tone – she was widowed shortly before James was born and endured these critical years as a single mother. She discussed the struggles of choosing a school for James, deciding that mainstream was inappropriate, as one “can’t integrate to the detriment of other children.” Sarah also spoke the most highly of the impact of Riverside on her son, now a beloved figure in the community.

With humor and optimism, the mothers reflected on three main struggles: relations between siblings, government support, and the future. Each of the moms spoke of the uniquely strained relations that can often develop with siblings of a disabled child. Glen spoke of the difficulties of splitting her attention between her children. Lisa reported that her other daughter, twelve years old, is often teased on account of Gemma. Sarah, now remarried, struggles with divisions in her new family, though James participates eagerly in a Mencap buddy program (similar to ND’s Best Buddies chapter – see below).

John’s government funding was recently cut off because John can walk and talk and, according to the rules, he therefore no longer qualifies. Gemma struggles with defining autism in the context of disability and has similar struggles with funding. Sarah characterized the forty-two-page DLA (Disability Living Allowance, see below) form as “soul destroying.” This form must be updated and resubmitted every five years and each woman expressed frustration at the fact that, in Sarah’s words, “Some person in an office decides whether you deserve help.”

The future is uncertain and somewhat terrifying for each of the mothers. Glen worries about life after college for John, who will most likely be in assisted living, which she described simply as “a very big step.” Gemma constantly worries about the difference in futures of her two daughters. Sarah admitted that even though James is extremely happy at Riverside presently, she must always plan five years ahead, stating, “When you have a disabled child, you battle the rest of your life for them.”

Sarah concluded the session with a touching, positive sentiment, saying through a smile that, “You just don’t know about the future, but it is constantly in the back of your head – the possibility of jobs, spouses, families for our kids? We don’t know. We do know that all we need for now is a sense of humor and complete and utter love.”

References

Anne Ruggles Gere, “Seeing is/not Believing: Visibility, Invisibility, and Disability Studies in Education,” in Disability Studies in Education: Readings in Theory and Method, ed. Susan L. Gabel (2005), 53-63

Sutton Mencap Buddy Program: http://www.suttonmencap.org.uk/Volunteering/Vol%20handbook.pdf

Recent article on the Notre Dame chapter of Best Buddies: http://newsinfo.nd.edu/news/12215-notre-dame-best-buddies-group-recognized-as-outstanding-chapter

Information on the DLAhttp://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DisabilityLivingAllowance/DG_10011925