CILT and Community Partners Present:
MAINTAINING INDEPENDENCE OUR WAY:
A three-day conference focused on strength-based
parenting with a disability, self-managed attendant service
(Direct Funding), and aging with a disability.
You may register for 1, 2, or 3 days. All 3 days are free to attend.
WHEN:November 28th – 30th, 2012
Registration begins at 8:30am and each day runs until 4:00pm
49 McCaul Street, Toronto
NOVEMBER 28TH: Strength-Based Parenting Initiative Network (SPIN)
RSVP to Melanie, ext. 222
NOVEMBER 29TH: Aging with a Disability
RSVP to Carling, ext. 270
NOVEMBER 30TH: Self-Managed Attendant
Services – Direct Funding
RSVP to Melissa, ext. 241
Lunch and refreshments will be served
ASL and other accommodations will be provided upon request.
We regret we are unable to provide childcare
RSVP: BY NOVEMBER 23RD, 2012
Call: (416) 599-2458 or 1-800-354-9950
Gabriel West loves to ride the subway. So I rode it with him and his two dear friends Steve Lappano and Ryan Blakely, the other day, all the way from Broadview to Kipling and back again.
Sitting in his wheelchair, West giggled — it sounded like a high-pitched whine — and cracked jokes about how he was going to take off to Ottawa. He barked like a dog and pretended to chew his friends’ doughnut cheeks. The three of them cuddled and held hands like a pack of giddy 4-year-olds.
Except West is 35, and his friends are around the same age.
West has cerebral palsy, extreme epilepsy and is blind. He is dependent on attendants like Lappano (current) and Blakely (past) for all his mundane and profound needs.
But his life is joyous and full.
He packs hampers at a food bank once a week.
He’s a regular at a downtown church.
He lives in his own apartment on the ground floor of his mother’s tiny east-end house.
He is proof that even the most disabled can live autonomous lives, given support.
“I want to give you a kiss,” he says, stroking Lappano’s head. “I love you.” An older woman across the aisle and I both smile at the sight. How often do you see grown men fawn over one another? When is the last time one of your friends fawned over you?
It hasn’t always been this way. For much of his childhood, West was locked into places — broom closets, bed frames, the inside of a classroom while the rest of his classmates played outside. His mother, Martha Eleen, recalls how teachers even made him stew in his feces, trying to train him out of his disability.
“He’s been tied up in every single segregated program he’s gone to,” she says.
She abandoned her aspirations of an art career and picked up welfare cheques to care for him full-time.
In the early 1990s, she lobbied the Ontario government for help and was given 55 hours a week of attendant care — just under eight hours a day. That didn’t last long: the Harris regime slashed it by a third and promised to reduce it to two hours a day after West turned 18.
The Gabe West campaign was launched, which was gruelling and head-bangingly frustrating, as battles with bureaucracy tend to be. One snippet: Eleen and West visited 53 group homes in the city to prove to the Ministry of Community and Social Services what they knew all along: Gabe wouldn’t or couldn’t be admitted to any of them.
Finally, after two years, the government relented. It gave Eleen around $72,000 a year to pay for daytime homecare for West.
Eleen launched her painting career. West joined a native drumming circle and rode the subway to appointments around the city. (He loves the sounds and movement of the trains. Shut your eyes for a while when you are next on it. He’s right — it’s pretty special.) He developed deep friendships with his attendants, who clearly adore him.
A year ago, West’s seizures kicked into high gear — from one a month to three a night. Eleen rushed him to the ER time and time again, concerned he would slip into “status epilepticus,” or an unabating seizure, which can be fatal. (At 15, West’s brain was damaged by an unending seizure. Eleen says he lost much of his speech and motor skills in his hands.) Then, his bladder stopped functioning. He now needs to be catheterized.
Since then, Eleen spends most nights awake, caring for her son. She’s exhausted and scrambled but driven by fear of other options.
“It’s my body keeping him here — 379 hours a month,” she says. “I’ve been burnt-out for more than 20 years. If I get sick, Gabe has the grimmest future — with restraints and a life with no community. He would die.”
She’s brushed off the Gabe West campaign and plugged it back into that well-worn socket. West has already done two assessments with two different ministry agencies to prove his needs again. Eleen drafted a budget for 24-hour care, plus worker benefits, totalling $180,000. Last week, she met with some Ministry of Community and Social Services officials. She says they said she would be eligible for only an extra $7,000.
“They said the only other option was a nursing home,” Eleen says.
I am haunted by memories of visiting my husband’s grandfather in a nursing home and finding him sitting alone in a dark hall with his pants half on. We all know what will happen to West in a nursing home: no more drumming or food hamper-packing or cuddling with friends on the subway.
Do you think $180,000 is too much to pay for a life?
Watching West, I realize it’s not just he who will suffer, but all of us. West is a reminder that life is about more than budgets. It’s about delighting in the regular subway sounds and tender love.
“The things Gabe can offer us are so different than what people usually think they need to have a good life,” says Lappano, unfolding himself from a moment from West. “For Gabe, everything is relationships.”
If we don’t take care of the most vulnerable, what hope is there for rest of us?
Instead of fighting Eleen, the Ministry of Community and Social Services should study her work. While the ministry espouses community living on its website, she and West live it. Eleen has developed a wonderful iteration of community living — a flexible, unique, innovative model that works.
Give her the money she needs so we can keep West in our lives.
Catherine Porter’s column usually appears on Tuesday, Thursday and Saturday. She can be reached at email@example.com