Photos byBILL KEAY/VANCOUVER SUN

IN A BUNKER-LIKE industrial building inBurnaby, Tricia Duff pores every weekdayover work that is secret. The 42-year-oldPort Coquitlam resident painstakinglyunrolls, lays out, measures, cuts and clips

together a three-metre-long octopus ofhydraulic tubes, transforming them into theentrails of cutting-edge high-technology equip-ment.

It’s been called Tricia’s “007 job.” The compa-ny that hires Tricia to assemble the hydraulicharnesses has asked that their purpose not berevealed. The Vancouver Sun was not permittedto take photos of Tricia methodically perform-ing her handiwork, in which she was totallyabsorbed. In the flow.

The company’s executives don’t want theirclients, or their rivals, to learn about their com-petitive advantage:

A woman who has a rare gift for memorizing,for understanding complex systems and forrepeating patterns. Down to the millimetre.

A woman who also happens to be autistic,who cannot speak more than two or three wordsat a time, who does not have the emotionalcapacity to cry and who has been known to biteher fist or bang her head when anxious.

“When the company approached us to do thiswork, I didn’t think we could do it,” says Dave

Woolacott, a vocational consultant for the Burn-aby Association for Community Inclusion,which serves hundreds of developmentally dis-abled people.

“But then Tricia popped into our heads. Shewas shown how to do one. Then she put her firstassembly together by herself, without us help-ing. We were astounded.”

Few people would have the logic, fine motor

skills or patience to do Tricia’s exacting task. On this day, Ron and Helen Duff, Tricia’s par-

ents, have come to the Antrim Street shelteredworkshop to see Tricia’s clandestine work forthe first time. Woolacott tells Tricia her momand dad seem proud of her.

“Yes!” Tricia says loudly.“We’re very proud,” affirms Ron. With a touch

of uncertainty in her eyes, Tricia looks sideways

at her dad and mom, always eager for theirapproval.

Since Tricia began working more than 18months ago as a self-employed contractor forthe B.C. engineering firm, she’s finished morethan 600 of the convoluted hydraulic units.

When she’s not taking the bus and SkyTraineach weekday morning to assemble the maze oftubes and clamps, Tricia is also a whiz at liningup the coloured blocks in a Rubik’s Cube andplaying computer card games.

She can effortlessly fit together 3,000-piecejigsaw puzzles. When she was young, she oftencompleted 300-piece jigsaw puzzles by examin-ing only the pieces’ blank undersides.

Tricia also becomes absorbed in the minutiaeof cross-stitching, and has won awards from theBlue Mountain Quilting Club, where she com-petes against women without disabilities. AndTricia is always keen to assemble anything froma backyard barbecue to a lawnmower.

When staff at the Antrim Street workshop askTricia to make cedar lawn chairs or gift boxesfor smoked salmon, she works so efficiently sheproduces too much product, which has to gointo inventory.

In addition, as revealed by Tricia’s bedroomwall full of Special Olympics medals and rib-bons, she enjoys virtually every sport known tohumanity — including figure skating, swim-ming, track and field and five-pin bowling,where she earns scores of 240 and more. Triciaalso likes to dance.

As well, she has been known to appreciate amargarita or two.

It’s not a perfect parallel, but there are simi-larities between Tricia and the character DustinHoffman played in the Academy Award-winningmovie Rainman.

That awkward, withdrawn character, who wasconfined most of his life to a large institution,was called “an autistic savant.”

The Hoffman character could barely relate topeople, but he had a genius for mathematicalcomputations, as well as memorizing Las Vegasblackjack cards.

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DOUGLAS TODDVANCOUVER SUN

Tricia Duff has a rare ability to understand complicated systems and repeating patterns. When she was young, she completed 300-piece jigsaw puzzles by examining only the pieces’ blank undersides.

I had breakfast. I went to work in B.C. Translink. I put together the tube. I cut thecable on the tube. I had coffee. I put together the tube. I cut the cable on the tube. I

had hot dog for lunch. I put together the tube. I cut the cable on the tube. I hadcoffee. I cut the cable on the tube. Annie and I went to shopping. I bought present forFather’s Day. We had BBQ chicken for supper. Annie and I went to Quilting Guild. I did

the needlework. We showed the quilt.

DIARY OF TRICIA DUFF

Continued on C2

She can’t speak more than two or three words at a time. She lacks the emotionalcapacity to cry or relate to others the way most of us do. She is also brilliant at

handling complex tasks that would leave the rest of us baffled. A decade ago she wouldhave been tucked away in an institution. Today, she has independence.

OBSERVERC2 THE VANCOUVER SUN, SATURDAY, FEBRUARY 26, 2005

“Tricia knows all these numbers and namesand dates,” says her mother. “And she’s so capa-ble at the level of action, of doing things. But herlevel of comprehension is superficial. There’sno interior depth.”

Still, Tricia (or “Trish” as she is commonlyknown) has turned into a bit of a star in what isknown as the community-living movement, thedecades-old effort to move mentally disabledpeople out of often-harsh institutions and intosociety.

The community-living movement, which hassince gone worldwide, was pioneered by BritishColumbians such as Tricia’s parents. Helen andRon were instrumental in the campaigns to shutdown crowded institutions such as New West-minster’s Woodlands, where patients were fre-quently abandoned and forgotten.

Helen and Ron were also instrumental in cre-ating a crucial support network for Tricia, whichhas her contributing much more to society thanmany people with less severe forms of autism,or, for that matter, many people without anymental handicaps at all.

On one of the family’s regular Sunday walksthrough the tree-shrouded trails of Stanley Park,Tricia moves with a hint of an athlete’s swagger.

There is a bounce to each step, reflecting themany hours each week she spends running,skating and swimming (frequently winning Spe-cial Olympics ribbons for the 100-metre back-stroke and freestyle).

Tricia wears a yellow rainjacket, black track-suit, jogging shoes, knapsack and blue sun-and-star earrings. Occasionally, she shoots off aheadof her parents for a short jog. She looks fit and alittle funky.

But even though her eyes constantly scaneverything around her, Tricia rarely makes eyecontact for longer than a second. In front of acamera, she tends to make a smile that looks likea grimace.

Tricia gives a more authentic smile only inrare moments, usually when she’s alone withher parents, or skating or playing with animals.

Even in her best moments, Tricia hardlyspeaks. “Tricia doesn’t really have language,”says Helen. “She doesn’t actually converse. Shenever did.”

When Ron, walking through Stanley Park,asks Tricia a question, such as: “Did you see thenew building?” she answers automatically, “Yes.New building.”

Tricia wants to please, but sometimes she says“yes” even when the correct answer is “no.” It’soften hard to understand the few words shedoes say. “Building,” for instance, comes out like“bidding.”

As Helen says, “Tricia could never be her ownadvocate.”

Tricia’s parents are glad B.C.’s giant institu-tions for the mentally disabled have been shutdown and Tricia has been able to live on the out-side. But they acknowledge it’s been a long,tough battle that never seems to end.

Despite all the little victories in Tricia’s life,setbacks hit often, for her and for roughly160,000 other Canadians with developmentaldisabilities, including about 35,000 with autism.

Developmental disabilities — which includeautism, cerebral palsy, spina bifida, Down Syn-drome and Fetal Alcohol Syndrome — aredefined as mental deficiencies that people areeither born with or develop as children. They’renormally distinct from psychiatric illnesses,such as schizophrenia or bipolar disorder.

Autism has been described as a walkingprison — a neuro-behavioural syndrome thatimpairs communication and social interaction,often masking a lively intelligence. It can alsobe a literal prison, with many autistic childrenoutside of B.C. ending up institutionalized, withvirtually no freedom.

Although giant institutions for the develop-mentally disabled are generally being phasedout across Canada, Ontario, Manitoba, Albertaand other provinces still operate some of them.

Helen and Ron are both now 77 and acknowl-edge they’re “preparing for death.” They realizethey’ve got to take extra steps to make sure, afterthey’re gone, Tricia stays a vibrant part of urbansociety, which is often uncompromising towardthose with mental problems.

In the past two years, the B.C. government’scutbacks to services for developmentally dis-abled people have made Helen and Ron moreworried about the future of Tricia, and others.They’ve too often seen Canada’s social safetynet fail people with disabilities.

Although Tricia has so far emerged relativelyunscathed from cuts to programs for B.C.’s men-tally disabled, Helen says the Ministry of Chil-dren and Families has been in “turmoil” sincethe reductions began in 2003. Why did the B.C.government, she asks, wait until its Feb. 15, 2005,budget before promising to restore part of thelost funding?

Political commentators such as The Vancou-ver Sun’s Paul Willcocks maintain cuts to theMinistry of Children and Families have come ontop of “an endless, grossly mismanaged restruc-

turing effort,” particularly of the departmentmonitoring how to keep people with develop-mental disabilities in the community.

The disruptions came to a head with the con-troversy-ridden resignation in early 2004 ofGordon Hogg as the Minister of Children andFamilies. That was followed by the equally sud-den resignation in September of his high-pro-file successor, Christy Clark, who announcedshe was leaving B.C. politics entirely.

I had breakfast. We watched TV. Wedrove me to Town Centre Pool. I swam.I waved. I slid down the slide. I sat intothe hot tubs. I walked to Jervis blocksale. I had lunch. I played the ball....

TRICIA’S DIARY

A short decade or two ago, Tricia could easi-ly have been living in a large B.C. institution for“the retarded.”

The institution would have allowed Tricia nosay over whether she could come or go, theclothes she wore, the food she ate, whether sheexercised or even what she watched on TV.

Helen and Ron had friends who sent their kidsto New Westminster’s Woodlands Institutionbefore it was finally shut down in 1996. AndHelen remembers the day she drove out to vis-it Woodlands, which was built for 1,400 buthoused 2,000 — and still had a long waiting list.

Helen, normally the unruffled type, says:“When I saw how huge it was — building afterbuilding — I had to go over to the Royal TowersHotel. Because I needed a drink.”

Tricia was never sent to Woodlands. But if shehad been housed there, and a common patternprevailed, she could have easily lost all contactwith her family. Or like many, she could havesuffered abuse — sexual, physical or emotional.

As B.C. government investigations haverevealed, that’s what’s happened to many atWoodlands and other large institutions for dis-abled children, where a few staff had an incred-ible amount of power over those with none.

Tricia’s journey heads down a different road.Led by people such as Ron and Helen, B.C.’scommunity living movement began in the late1970s to question the need for institutions fordevelopmentally disabled young people.

The Duffs and many other parents began to

push B.C.’s Social Credit government to dosomething to reform what they considered threenotorious institutions for children: Tranquillein Kamloops, Glendale near Victoria and thelargest, Woodlands.

“They were like being in prison,” says JackStyan, former executive director of the Burna-by Association who is now policy advisor forPLAN, a private organization devoted to creat-ing long-term support networks for people withdisabilities.

Not only was the food terrible in the institu-tions, many patients were treated in brutal fash-ion. “You didn’t have freedom of movement orassociation,” Styan says says.

“I know of some people who were put in a bigroom and sprayed with a hose. That was theirshower.”

To watch TV, some were chained in theirchairs. “It was very impersonal and people hadvery little control over anything,” he says.“There were big rooms with 15 people living inthem. There were a lot of people who couldn’tgo to the bathroom on their own.” Privacy wasnon-existent.

Despite the oppressive conditions, manystruggling families, ashamed to have a disabledperson in their households, grimly sent theirchildren to such institutions — in part to forgetabout them.

Styan has met people who didn’t know theyhad a a sibling until he or she died in a B.C. insti-tution.

Their experiences were much like that under-gone by the character Tom Cruise played inRainman, who spent most of his life believinghe was an only child until he discovered he hadan institutionalized brother who was autistic.

“Wasted lives,” Styan says, shaking his head.“Completely wasted.”

(Although the B.C. government has shut downits institutions and apologized for abuse atWoodlands, many parents believe their fight isfar from over. B.C. government lawyers were incourt in this month fighting a class-action law-suit brought by 1,500 former Woodlands resi-dents.)

The parents who worked with The BurnabyAssociation for Community Integration andother organizations to shut down institutions“wanted more than bingo” for their loved oneson the outside, says B.C. educator Jean Bennett,co-editor of the book, So Far: Words from Learn-ers, which features the writings of people whoare mentally handicapped.

They lobbied politicians, worked the mediaand pressed bureaucrats to make it possible fortheir mentally disabled children to begin attend-ing integrated schools, and study alongside able-bodied kids. They wanted their kids to go todrop-in centres, live in group homes or labour insheltered workshops.

Thanks to the community-living movement,Tricia has been able to spend most of her life inher hometown of Burnaby or nearby PortCoquitlam. She’s enjoyed the suburbs’ schools,parks, libraries, malls, transit system, grouphomes, walking paths, running tracks, camp-grounds and recreational centres.

In particular, she received a great deal ofguidance and support from the Burnaby Asso-ciation (as it’s known), which aids roughly 300clients and 700 of their family members and iswidely considered to be at the cutting-edge ofadvocacy and programming.

By the 1990s, however, when Bennett says theNew Democratic Party government made B.C.the first province to shut down all its large insti-tutions for mentally disabled people, anotherparadigm shift was occurring.

Parents no longer wanted their children to beseen only as “the needy,” to be taken care of bythe state, Bennett says. They didn’t want peoplewith developmental disabilities to see them-selves as mere victims.

They wanted their loved ones to become anintegral part of B.C.’s social fabric.

To express themselves artistically.To volunteer. To hold down jobs. As Styan says: “The parents became interest-

ed in seeing their sons and daughters as citizens— and being recognized for their gifts.”

I had breakfast. I watched TV. Wewent to shopping. I bought present forJennifer’s birthday and Lynn’s birthday.We had lunch. Lorraine and I went to

Mom’s house. I made the salad. It was“Annual Family and Friends’ Summer

BBQ.” Jennifer, Adam, Uncle Bill, Tom-my, Helen, Aunt Sylvia, Mary Gardner,Bill, Mary Hunter, Lynn, Tammy, Annie,Ron, Caela and Kieryn came too. We

talked. We drank. We had BBQ salmonfor supper. We talked. We watched TV.

TRICIA’S DIARY

Helen and Ron still remember the chillingmoment long ago when they realized theirdaughter was different. Sitting in the dining-room of the Burnaby split-level bungalow wherethey raised Tricia, it’s like the mid-1960s again.

Ron stares across the dining room table intothe adjacent kitchen, where Tricia stood at age21⁄2.

So much about Tricia up to then seemed typ-ical of a toddler. She was happy enough, like hertwo older sisters. The parents could say, “One,Two . . .” and Tricia would respond “. . . Three,Four, Five.” Tricia could also sing Jingle Bells.

But on that fateful day in their kitchen, Ron,then a high school chemistry teacher, tried toreally talk — to emotionally connect — with hisyoungest daughter.

“I was talking and I suddenly recognized shereally couldn’t understand me,” Ron says.

“She just walked away. It was an epiphany. Itwas then I realized our role in Tricia’s life wouldbe to bring her into the world.”

After the shock of their discovery, Ron andHelen worked to get over their misplaced guiltand advocate for Tricia. Since they were bothteachers, they had the skills to make the unpre-dictable social service bureaucracy work for Tri-cia. And when it didn’t, they were ready to lob-by to create something new, the community liv-ing movement.

Some of the toughest times in raising Triciacame when she was frustrated and she’d bite herfists or bang her head. But Ron and Helen weredetermined to do the best they could for theirdaughter. They’d take her to new doctors, newspecialists, new schools, new outreach pro-grams, new social groups, new workshops.

All the while, Helen, who quit her career asan elementary school teacher to take up the full-time job of raising Tricia, diligently trained Tri-cia in what most people with developmental dis-abilities can’t do: reading and writing.

“It’s so easy for them to give up and then with-draw, because they aren’t able to communicatethrough words,” Helen says. Adds Ron: “It wassometimes hard to get off your butt each nightand spend 30 minutes with her at writing. Butwe did it.”

As Ron says, he and Helen, their other twodaughters and a network of supporters in effectprovided Tricia with the homegrown elementsof an early-intervention therapy now known as

From C1

Sunday is figure skating day, starting with stretching, accompanied by her dad, Ron. She smiles rarely, usually when she’s alone with her parents or skating or playing with animals.

Off to work on the SkyTrain: Tricia has held paying jobs for most of the last 15 years.

Tricia works so efficiently that she produces too much product, which has to go into inventory.

OBSERVER THE VANCOUVER SUN, SATURDAY, FEBRUARY 26, 2005

Lovaas autism treatment.The Lovaas treatment is relatively new, hav-

ing been developed in the late 1980s, but it hasshown some dramatic results. It is intensive,involving 20 to 40 hours a week of one-on-onetherapy.

And it can be expensive, costing up to$60,000 a year for each child. That’s why fourB.C. families began a legal journey six years agoin which they took the provincial governmentto court over its refusal to pay for the treat-ment.

The Supreme Court of Canada recently ruledthat, even though the Charter of Rights guar-antees equality for disabled people, it does notlegally require the B.C. government to pay forthe Lovaas treatment. Still, some provinces,including Alberta, Ontario and Prince EdwardIsland, cover part of its costs. Ron says thosegovernments believe funding the Lovaas treat-ment will, in the long run, prove better and lessexpensive than not providing it.

Helen hauls out the thick folders on whichTricia practised writing sentences year afteryear. Tricia’s early sentences do not expressemotions, but they make logical sense, just likethe daily diary she has been keeping since sheturned 15.

Tricia finally moved out of her parents’ houseand into government-run group homes whenshe was 28. It went all right for several years.But after a while Tricia ended up being the onlyfemale living in a group home with six males. Itseemed like a scenario headed for trouble.

Tricia was lucky, however. She had earliermet Lynn King and Tammy Severin, whoworked with developmentally disabled people.Slowly, King and Severin formed a caring rela-tionship with Tricia. Eventually, King and Sev-erin invited Tricia to move in with them. Shecontinues to share a house with them today.

The main reason Tricia writes in her laven-der-scented diaries, which fill an entire book-shelf in her Port Coquitlam bedroom, is so herparents will know what she does week afterweek.

Tricia is enamoured with her parents and hasalways wanted to be like her mom, says King.Tricia takes the SkyTrain on her own everyWednesday evening to visit her parents for din-ner.

Helen and Ron also pick up Tricia on Sun-days for a meal, a walk through a park and anhour of figure-skating at the Coquitlam Recre-ation Centre, where she’s able to glide on oneskate, holding her other leg out behind her,almost parallel to the ice.

Tricia has done well in part because she’sstrived to be independent, like her older sisters— including to the point of indicating she’d liketo have children.

But Tricia has never really had a boyfriend. “I think Tricia realizes she’s all right being an

aunt,” says her mom. Helen is grateful Tricia is not promiscuous,

unlike some mentally disabled people who aremore emotionally expressive and, Helen says,can be easily victimized.

Still, Tricia, supported by a web of people —parents, siblings, relatives, friends, employersand professional staff, who stress her abilitiesmore than her disabilities — leads an exhaust-ing schedule.

It’s included working at paying jobs for mostof the past 15 years.

“Tricia is the one who has made it all possi-ble,” says Helen. “She’s very tenacious.”

She finds it difficult to be idle. She held a daily job for many years in Lang-

ley at a company called Odorchem, which pro-duces a chemical compound that eradicatesodours, particularly from the toilets of yachts.

Tricia took the bus almost every weekday toOdorchem. She would fill, label and stack bot-tles. She was punctual and efficient.

Although Tricia’s marked quietness cansometimes make her seem snobby to peers,Severin says it had an upside at Odorchem. Tri-cia doesn’t descend into the emotional “soapoperas” many people with developmental dis-abilities get into, which Severin says often dis-rupts their attempts to complete a task.

Unfortunately, Tricia lost her Odorchem joba few years ago when the company switched topackaging its product in large containers,which Tricia couldn’t handle.

Despite Tricia doing valuable work for $8 anhour at Odorchem and currently assemblingcomplex hydraulic tube systems in Burnaby,King recognizes Tricia has distinct limitations.

She can learn through copying, but shestruggles to learn through listening. “Thosepathways in her brain are just not moving,”King says.

This has frustrated some of Tricia’s prospec-tive employers, including bakeries such asGisela’s, which saw Tricia excel at decoratingcakes. Telus staff also witnessed Tricia per-fectly soldering computer circuit boards —while correcting the mistakes of those whoworked alongside her.

But Tricia couldn’t continue in those jobsbecause her employers, King says, had troubleunderstanding why someone who is so capa-ble at decorating cakes and soldering circuitboards isn’t adept at other things required ofworkers — like relating, or learning in a class-room.

To find the right fit for Tricia, her network ofsupporters has known it must remain con-stantly vigilant onher behalf.

Tricia’s nat-ural talentfor regularpatterns is

both her strength and weakness, because oneof her biggest challenges is dealing with unpre-dictability.

More than most people, Tricia gets upset, forinstance, if bad weather wears on too long. Shecan’t understand why that is. And whenGreater Vancouver’s transit system haschanged its schedules or been disrupted byconstruction, Tricia hasn’t always been able tohandle it.

It was highly traumatic for Tricia whenTransLink threw off her carefully plannedweekday routine of riding the bus from herhome in Port Coquitlam to Odorchem in Lan-gley. One day it caused Tricia to go into a pan-ic. She started biting her hand and screamingloudly, which she does when she’s feelingextreme emotion, either fear or excitement.

The next day the bus driver refused to pickher up at the bus stop. He also took away herbus pass.

Alone, Tricia had no idea what to do.For three hours she waited anxiously by her-

self at the bus stop, fretting she was late forwork.

Crises like these threw Tricia’s network intohigh gear. Parents, friends and Burnaby Asso-ciation staff got together. They met with tran-sit officials, explained Tricia’s situation andemphasized her dependence on transit. A com-promise was reached; Tricia was able to keepriding the buses.

Tricia’s parents hope that, after they die, Tri-cia’s friends and sisters will take over her sur-

vival-management challenges. To try to ensurethat, they’ve joined the non-profit organization,PLAN, which is devoted to sustaining caringnetworks for developmentally disabled peoplethat will last until they pass away.

... I came home in BC Translink bus. Idid the needlework. We watched TV.Annie came too. Annie and I went to themovies. We had supper. We watched“Kill Bill: Volume Two” on the movies.We drove home.

TRICIA’S DIARY

Since British Columbian parents were amongthe first in the world to fight the stigma againstmentally disabled children living in the widercommunity, the province is full of stories ofpeople who, instead of being warehoused, havebeen able to take significant roles in society.

There is the story of Phil Allen, for instance,who was institutionalized as a mentally dis-abled child and forgotten. Yet he eventuallyfound a way to escape the institution and makehis own way in the world. He obtained a regu-lar job washing cars at the Dueck auto dealer-ship in Vancouver.

Allen married and became a public speaker,standing up for the rights of disabled people.Last year the Burnaby Association helpedAllen reunite with his Prairie family. “It was

wonderful,” said the Burnaby Association’sexecutive director, Richard Faucher.

There is also the story of Deb Yashuk,who was cut off from her family while

living in Glendale Institution onVancouver Island. Doctors pre-

dicted Yashuk, who can’tspeak, feed herself or

walk, would be dead by age five. But she’s push-ing 50.

Yashuk takes care of a retired racing grey-hound dog, which would otherwise have beenput down. Yashuk, who has known Tricia foryears, also has a boyfriend and was recentlyre-united with her family of origin.

The headquarters of the Burnaby Associa-tion is at 2702 Norland Avenue. Allen, Yashukand Tricia have spent a lot of time there. Anon-profit service provider funded mainly bythe B.C. government, the large Burnaby Asso-ciation building feels like a cozy communitycentre.

The lively paintings of more than 45 peoplewith mental disabilities line the halls. A “wallof fame” shows the smiling photos of clientswho volunteer in the community.

There is a workshop where people stuffinserts into magazines and do other repetitivework, as well as a computer lab, art club,infant-development centre, “multiculturalfamily room,” common kitchen, drummingcentre, photography studio, teaching hall andan equipment-filled office where a printingco-operative is run by people with develop-mental disabilities.

Away from the Norland Avenue building,the Burnaby Association operates group res-idences, daycare centres, teen clubs and theAntrim Street woodworking workshop, whereTricia puts together her hydraulic tubes.

After the Burnaby Association helped Triciaobtain her private contract with the engi-neering company, staff made it possible forher to get going on it by giving her a privateroom she could lock. Largely on their owntime, staff built an elaborate woodframe wallunit and table where she could organize hercomponent parts.

As a self-employed businesswoman, Triciagets $15 for each completed unit, which keepsher below the income limit at which shemight lose some government disability bene-fits.

However, the B.C. government in the pasttwo years has cut almost $2 million from theBurnaby Association’s annual budget, reduc-ing it to $12 million.

As a result, Faucher has been struggling toserve the same number of clients, includingTricia, with less money.

The government cutbacks have served asyet another reminder, says Faucher, that thecommunity-living movement has not foughtits last battle.

Even with so many of B.C.’s mentally dis-abled people living semi-independently, trav-elling freely on public transit, working, vol-unteering and enjoying a range of social pro-grams, no one is resting on their laurels.

What’s more, even though B.C. parents who

Triciaup close:

‘She has astrong gift formemorizing

details, and forspatial skills.

Yet, she’llalways dothings the

same way. It’sgood, to apoint. But

everything isblack and

white for her.There’s notmuch grey.’

RoommateLynn King

C3

‘Tricia is pretty clearly in the world because herparents [Helen and Ron Duff] created a circle ofsupport around her,’ says educator Jean Bennett.

Continued on C4

were able to raise their disabled children inthe community in the 1980s and 1990s arepleased they shut down the institutions, theykeep setting their sights higher.

Their ideals are exemplified by the goals ofPhilia, an organization the Burnaby Associa-tion has embraced and that PLAN promotes.

Philia, whose name is taken from a Greekword referring to the bonds of friendship thatunite members of a community, is a nationalorganization that emphasizes that people withdisabilities don’t only have rights, they haveresponsibilities.

The long-term goal of Philia, says Styan, is“to challenge all Canadians to take advantageof the wisdom, expertise and talents of Cana-dians with disabilities.”

Tricia is a living example of the emergingvision championed by Philia. As Faucher says,although some people with mental disabilitiesare content to take part in leisure activities orvolunteering, Tricia goes further.

“She’s not happy unless she’s got paid work,”Faucher says. “She wants to be connected toher community. She wants to be a contributingcitizen.”

I came home on the B.C. TransLinkbus. We had tea. I went out to dinner

at White Spot Restaurant inSkytrains. It was Susan’s 42nd

birthday celebration. “Happy BirthdaySusan.” Tammy took me home. We

watched TV. I played the game on thecomputer. I did the needlework.

TRICIA’S DIARY

While Tricia’s long-time roommates, Severinand King, chat on the patio of their Port Coquit-lam house, Tricia cooks three marinated steakson their large, stand-alone Fiesta Barbecue,which Tricia assembled on her own. She pro-nounces it “bu-bu-ku.”

Tricia also whipped together the householdlawnmower. She’ll assemble anything she canget her hands on.

One reason Tricia is a good roommate, saysSeverin, is she methodically follows writteninstructions. And, if some instructions happento be printed in, say, only Chinese characters,Tricia just follows the diagrams.

At her home, Tricia is also a master of theRubik’s Cube, aligning its coloured blocks withease. She gets obsessed with playing computercard games, particularly Solitaire. And shekeeps stacks of jigsaw puzzles in the cupboardof her bedroom.

“Tricia is a puzzle hog,” Severin says. When she’s doing a puzzle with Severin, Tri-

cia often shows off by fitting more than hershare of the pieces, complete with a finger tapon each successful piece. She doesn’t like walk-ing away from a puzzle until it’s finished.

Tricia also whips her way through wordgames, such as Search ’N Circle, which requirecircling hidden words buried on a multi-lettertemplate.

Tricia finds Search ’N Circle so easy she hasto make artificial challenges for herself — byrestricting herself to uncovering the words inalphabetical order.

“She’s like Rainman in that she has a stronggift for memorizing details, and for spatialskills,” King says.

“Yet, she’ll always do things the same way. It’sgood, to a point. But everything is black andwhite for her. There’s not much grey.”

Tricia has been a roommate with Severin andKing for years. When King asks Tricia if sheremembers the date she moved in, Triciaannounces it loudly and proudly:

“April 12, 1997.” She says it so rapidly it’s hard to understand.King, who works as a family liaison official

with the Burnaby Association, and Severin,who runs a Port Coquitlam group home,receive some government funds for Tricia tolive with them. The extra money has helpedthem buy their house. But they don’t like tomake a thing of the money. By and large, theysee living with Tricia as a mutually beneficialpleasure.

“Tricia isn’t a challenge. She’s definitely afriend,” King says.

But they’re aware Tricia experiences only asmall range of emotion.

“I’ve never really seen Tricia cry,” says King.During one of their annual vacations togeth-

er, Severin adds they went to Disneyland andtook Tricia on the Matterhorn rollercoaster.Severin says she was terrified. “But Tricialooked bored.”

Tricia can also become compulsive aboutwatching violent movies such as The Day AfterTomorrow or Kill Bill 2 at her regular commu-nity movie night. The same thing can happenwhen she stays home and intently tunes intoprograms such as CSI Miami and Law andOrder: Special Victims Unit.

King is cautious about over-exposing Triciato such grisly programs. Like many people withautism, King says, “Tricia may not understandthe people depicted in the show are suffering.”

Tricia also doesn’t like to touch people,although she will hold the household cats,Cookie and Riggins, who sleep on her bed.

Later, as King talked, Tricia sat contentedlyby herself in a corner in an oversized loungechair, with a stuffed animal wound around theback of her neck.

It was there to protect Tricia’s neck musclesas she meticulously worked her way through acomplex “counted cross-stitch” pattern, whichdepicted two contented cats.

This type of cross-stitch is among the mostdifficult to follow, King says. It requires care-fully counting spaces before threading a nee-dle through hundreds of thousands of holes. Atypical cross-stitching pattern take months tofinish. Which Tricia always does.

“She is the great completer of projects —including dieting,” says King. “She could teachme something about that.”

However, since Tricia tends to copy thebehavior of those around her, King says she hasto make sure she’s a good role model.

“Everything Tricia learns is through watch-ing,” she says.

“She drinks margaritas at the same rate I do,so I have to be careful.”

While Tricia cross-stitched, King talkedabout how, when they first met, Tricia dressedlike an old woman — as a result of spending somuch time with her parents and modelling her-self after her mom.

King and Severin showed Tricia how to dress

younger, with a perkier haircut and earrings.Her mother acknowledges Tricia loves the fem-inine touches, at least as long as they’re partof her sporty image.

At home, Tricia is expected to do chores. Shecooks meals for herself when she’s home alone,as well as for King and Severin when they’rearound. She takes out the garbage, washes dish-es, vacuums, cleans up the bathroom, feeds thetwo cats, goes to her bank machine and buysher own toiletries.

“And Tricia is very giving,” says King. Shefondly recalls the time she and Severin camehome from an emotionally draining funeral tof ind Tricia had made a lovely dinner ofShake’n’Bake chicken, with vegetables, saladand dessert.

We had breakfast. I helped Catherinein living room. We put together the

cabinet. We went to MoondanceLake. We swam in the lake. We had

lunch. We sat in the sun. We cleanedthe house. I did the needlework. I

helped Catherine to make the salad.We sat the outside.

TRICIA’S DIARY

The continuing controversy surroundingB.C.’s Ministry of Children and Social Servicescame to a head in 2004 with the resignation ofthe cabinet minister in charge, Gordon Hogg.

Hogg stepped down before fraud chargeswere laid against one of his key officials, DougWalls, who had become embroiled in a suspi-cious bankruptcy involving a Prince George cardealership.

A long-time B.C. Liberal party activist, Wallshad previously been the subject of an internalprobe while serving as head of the govern-ment’s Interim Authority for Community Liv-ing, the body set up to create a $600-million-a-year program for B.C.’s developmentally dis-abled.

The provincial government’s plans for devel-opmentally disabled people “have gone off therails” since Walls was terminated and latercharged, says Styan, who monitors governmentpolicy for PLAN. It didn’t help that Hogg’sreplacement, Christy Clark, only lasted a fewmonths.

“It’s been frustrating. It’s been a very sad sit-uation,” Styan says.

It has exacerbated the challenges that parentsand loved ones of people with mental disabili-ties continue to face, Helen says.

One of those problems is a result of disabledpeople living much longer than in the past,when most died as children. Medical advancesare now keeping mentally disabled people alivealmost as long as the general population.

Given this new reality, even though Styansays services for many British Columbians withdevelopmental disabilities may be temporarily

adequate, a growing number of parents are wor-ried sick about what will happen to their childrenafter they die.

As well, with all of B.C.’s institutions now shutdown, many parents are simply anxious aboutmaking sure their disabled offspring don’tbecome lonely and cut off from the benefits of thesociety they’ve spent so much effort for their chil-dren to live in.

“Isolation is a big issue,” Styan says. “We’re allso interdependent. If someone like Tricia hadbeen isolated, she would never have blossomed.She might get some government services provid-ed for her. But she just wouldn’t have the samepresence. She wouldn’t have a home. She would-n’t have friends.”

A related concern borne by people in the com-munity-living movement, says King, is that gov-ernments might use de-institutionalization as anexcuse to privatize support; by foisting too muchresponsibility for caring for people with disabili-ties on to already over-stretched family andfriend.

At the Burnaby Association, Faucher maintainsthere has been another downside to the cuts ingovernment funding: They’ve crushed the moraleof employees, many of whom have worked pas-sionately to integrate clients into the wider com-munity.

Just look, Faucher says, at the extra effort twoyears ago that Burnaby Association staff happilyput into making a room-sized wooden templatefor Tricia to do her hydraulic-assembly job.

“Now,” Faucher says, “many of my workers justfeel personally attacked by the government.”

We had breakfast. I went to Antrim inB.C. Translink bus. I put together the

tube. I cut the cable on the tube. I hadcoffee. I put together the tube. I cut the

cable on the tube. I had lunch...

TRICIA’S DIARY

Tricia’s parents and friends have run into manyroadblocks as they’ve tried to integrate her intothe community. But through their determination— as well as Tricia’s own grit — she has endedup with quite a life, which in some ways exem-plifies the downs and mostly ups of the decades-long movement for community living.

Tricia has become someone who contributes,who gives. Take special holidays and birthdays.Since Tricia likes to keep lists in her mind, shediligently keeps track of the dates of Father’s Day,Mother’s Day, St. Patrick’s Day, Valentine’s Dayand the birthdays of more than 20 relatives andfriends.

Over a lunch of soup and bread at a StanleyPark cafeteria, Tricia, with nudging from her par-ents, recites the birthdates of all the people towhom she gives presents.

Beginning with the month of January, she saysher niece Carolyn’s birthday is Jan. 22; nephewJamie’s birthday is April 4; “Daddy’s birthday” isApril 8; sister Catherine’s birthday is July 5;

brother-in-law Peter’s birthday is July 26; sisterJennifer’s birthday is Aug. 15; roommate King’sbirthday is Aug. 19; friend Annie’s birthday isSept. 1; roommate Severin’s birthday is Sept. 6;her own birthday is Sept. 23; “Mom’s birthday” isNov. 19, and Adam’s birthday is Dec. 14.

On her parents’ birthdays, Tricia often givesrose bushes, flowers or shrubs that she wants tosee planted in the backyard of the Burnaby homeshe grew up in.

As Bennett says: “Tricia is pretty clearly in theworld because her parents created a circle ofsupport around her.

“Ron and Helen never accepted the limitationsociety expected. There are many folks with dis-abilities, like Tricia, that I would considerheroes.”

Despite all the successes in Tricia’s life, how-ever, the years ahead loom with some fragility.The Duffs know they’re getting on in years andthey will soon, as Ron puts it, be “ducking out”of this earthly existence.

The Duffs shake their heads when they thinkof parents they know in their 70s who have devel-opmentally disabled children, some of who are50, still living in the family home. “I think of thetrauma for their children when they die,” saysHelen, emphasizing she doesn’t want that hap-pening to Tricia.

The network that surrounds Tricia seems sol-id, but it can never to be taken for granted. AsHelen says, “A lot of it just goes on trust.”

Helen and Ron feel fortunate to have foundKing and Severin, who have promised, if theyever move out of the province, to either take Tri-cia with them, or find her a place to live.

But without King and Severin, and without theBurnaby Association, PLAN, Tricia’s sisters, theextended family, the Special Olympics, the PortCoquitlam quilting circle — the entire networksurrounding Tricia — Helen and Ron would wor-ry more than they already do about leaving heralone after their deaths.

In the here and now, however, they enjoy howTricia has been able to achieve something thatmany people, whether they’re disabled or able-bodied, never quite manage to accomplish dur-ing their years on this planet.

That achievement is remarkable in partbecause it’s so ordinary:

Tricia leads a good life. ❑

... I had lunch. I put together the tube. Icut the cable on the tube. I had coffee. Iput together the tube. I cut the cable onthe tube. I went home in B.C. Translink

bus. I went to Walking Club in B.C.Translink bus. I walked around the

track. I went to Coffee House. I danced.I had food and drink. I danced.

TRICIA’S DIARY

dtodd@png.canwest.com

OBSERVERC4 THE VANCOUVER SUN, SATURDAY, FEBRUARY 26, 2005

Working on needlework project at home: She becomes absorbed in the process — and wins awards for her work, such as this quilt.

Her wall is full of Special Olympics medalsand ribbons. She enjoys figure skating,swimming, track and field and bowling.

When Tricia first met her roommates, she dressed like an older woman as a result ofmodelling herself after her mother. They showed her how to dress younger.

Not only does Tricia cook a mean steak, sheassembled the barbecue — and other householdimplements. At right is roommate Tammy Severin.

In her room: At home, she cooks meals for herself and her two roommates, takesout the garbage, washes dishes, vacuums, cleans the bathroom and feeds the cats.

Tricia at home: A life full of projectsFrom C3