After the End(47)

Max


Professor Greenwood has a thin wisp of white hair combed carefully across his balding pate. His elbows rest on the leather-covered arms of his chair, and he temples his fingers and looks at them thoughtfully as he speaks.

“The majority of our students have cerebral palsy, although we cater for young people with a variety of complex health needs. Many are nonverbal, and many have degenerative or life-limiting conditions.”

I look at the glossy brochure in my hand, and at the eye-watering prices on the piece of paper discreetly tucked within the pages. On the cover, a girl in a wheelchair paints with her fingers, her head thrown back and her mouth open in a joyous smile.

“Our aim,” Professor Greenwood says, “is to help every pupil achieve their full potential. Our therapy team is multidisciplinary—we have speech and language therapists, physiotherapists, as well as excellent links with feeding clinics, orthopedics, orthotics . . .” He reels off a list of agencies, only half of which I recognize. I nod and make listening noises, and look through the brochure at the happy, glossy faces. I imagine Dylan in a special chair, painting, playing music, learning to do the things Dr. Khalili claims he won’t ever do.

“The doctors at St. Elizabeth’s believe my son’s needs will be profound.”

Professor Greenwood looks irritated by the interruption. A sharp tsk escapes, disguised as a breath. He peels his fingers apart and picks up the report I emailed to him in advance of our meeting: an overview of Dylan’s condition, both now and predicted.

“This is worst-case scenario, of course,” I add. “We have arranged for an independent consultant to examine Dylan, and I expect his conclusions to be much more positive.”

“Indeed.” Professor Greenwood puts down the report.

“In your opinion, could my son lead a fulfilled and enjoyable life?”

“Terms that are both subjective—”

“Could he do the things in here?” I brandish the brochure.

“—and relative. What would be a dull and meaningless existence for one person, is gratifying and exciting for another. Our philosophy is that every life is worth living, every achievement worth celebrating.” He stands up. “Perhaps you would like to see our sensory room?”

From the outside, Oakview School has the appearance of a country hotel; from the inside it is a curious mixture of school and hospital. The hallways are wide, with ramps instead of steps, and the antiseptic tang of PICU.

“Many of our students are immune-suppressed,” Professor Greenwood says, “so hygiene is paramount.”

The hallways are lined with children’s paintings and photographs like the ones in the brochure. We pass offices labeled with foreign acronyms—SLT, SaLT, OT—and a classroom where half a dozen children are banging drums. In an open-plan library area on the other side of an internal quadrangle, a child lies on a flat wheelchair. Beside her sits a woman with an ID badge pinned to her shirt.

“Genie has cerebral palsy, epilepsy, scoliosis, and profound learning difficulties,” Professor Greenwood says. “She cannot walk, sit, or speak.”

I notice the computer screen next to the wheelchair. “What are they doing?”

“Genie is emailing her parents to tell them what she’s been doing at school.” His tone, bordering on brusque when directed at me, softens as he watches his student. “They aren’t able to look after her at home, and they live some distance away, so . . . That screen is an Eyegaze Edge. It can pinpoint the user’s gaze to within a quarter of an inch. With its help—and a little guidance from us—Genie can control her wheelchair, play music, watch videos, generate speech, send emails, write a book, even.”

“Incredible.”

“She is.”

Is this Dylan’s future? If it is, then surely this is a life worth fighting for? I picture Genie’s mother opening her emails, then showing her husband, printing out Genie’s letter so it can join the others that mark their daughter’s progress. They will be proud of her achievements, proud of her.

And yet Genie doesn’t live at home. Can’t live at home. Because her needs are too great? Because her parents can’t cope? So Genie lives here, in this expensive, well-equipped place that is neither a hospital nor a school, yet somehow manages to be both.

I’m still thinking about Genie when we reach the sensory room, a tranquil, dimly lit space with padded floor and walls, and twinkly lights across a midnight-blue ceiling. In the corner a glass column of water sends bursts of bubbles skyward, its lights changing from green to red to purple. In the center, a glitter ball sends tiny spots of light dancing around the room. There is only one student in the sensory room, lying on the floor in the fetal position, his eyes open but his face devoid of expression. A member of the staff sits quietly nearby.

“David suffered a brain injury during a rugby match when he was fourteen,” Professor Greenwood says. “He has significant cognitive impairment and limited mobility.”

The young man on the mat must be as tall as I am, his limbs thin but long. “How old is he now?”

“Nineteen. He should have left us a year ago, but it’s a complicated transition. David has multiple needs.”

“Where will he go?” I try to imagine Dylan as an adult. “Where do they usually go?”

Professor Greenwood begins walking again, and I realize we have looped full circle, and are almost at the reception where I signed in. “We help parents find places in residential care homes, in the main, but as you can imagine, spaces are limited. There are far fewer resources for adults than for young people.”