A quest for compassion
Bruce House fights an uphill battle to dish out dignity in a world awash with phobias

Janice Kennedy, The Ottawa Citizen, May 01, 2005

You make assumptions. You think the march of civilization in your lifetime has been marked with a kind of progress -- the steady elimination, say, of certain prejudices, certain stupidities, certain knee-jerk cruelties. You run into the odd creep or dinosaur occasionally, but, in general (you tell yourself), the sensibilities of the world around you are more refined now, more educated.

Then the truth catches you up like a punch in the nose.

The folks who work at Bruce House, which provides support to people with HIV and AIDS, know all about that punch in the nose. They can tell you about the reaction not long ago that greeted one of their staffers at a nearby bank, where she'd gone to get a cash float for an upcoming garage sale. ("Ewww," said the young man behind the counter. "A garage sale at Bruce House?") They can tell you about the hurtful and surprisingly uninformed reactions of some doctors -- doctors! -- to their residents.

"There's a lot of that kind of thinking," says Jay Koornstra, executive director of the place. It's defensive thinking, he says, taking old fears and spiriting them away neatly into an unknown world. "If you can put it in someone else's arena, you don't have to play the game."

Richard Naster, the social worker who has been the transition-house team leader since 1991, has a slightly different explanation for the ugly reactions. "It's all those taboos that terrify everyone -- sex, drugs, sexual orientation, civil rights, human rights. And it all gets tangled up with illness and death. We still see AIDS phobia, homophobia, the phobia a lot of people have for people from the street. We see those things endlessly."

So people like Naster and Koornstra and Martha Scott, who raises money and works for the organization as its development consultant, have become expert at educating the larger world -- even as they go about doing the daily good work that is their job. The job they do involves caring for people who haven't exactly been deluged with caring throughout their lives.

Some have been street people. Some have been serious drug users. Some bring with them the kind of baggage that sends chills down the spines of middle-class sensibilities. What the Bruce House clients have in common -- both those with sketchy backgrounds and those without -- is that they are in desperate need of compassion and care.

They will be helped to manage their lives with HIV, some of them, either in one of 26 subsidized assisted-living apartments or with the intensive support provided at Bruce House's five-bed home in Westboro. Others will die there, their pain controlled and their dignity restored.

Over the past week, the Citizen has been painting a picture of the current state of palliative care in Ottawa and beyond. It is important to remember that Bruce House, despite its small size and the often marginalized status of its residents, has been an integral part of that picture since 1988. No conscientious society can choose to ignore those it may find inconvenient.

At Bruce House, they call the residents "clients," because that's the proper buzz-word of the day. But it wouldn't be a terrible stretch to describe them as family -- those living there, those working there, those volunteering there. The family is large, sometimes messy, not always happy, occasionally dysfunctional -- but family it is, with a core that binds its members to one another in a transcendent act of mutual caring.

Consider the case of "Bob" (whose name was not actually Bob). He had been living for years with HIV when he was diagnosed with cancer, the kind that would claim him in a few months. He was genuinely shocked, recalls Naster, and devastated. Then, with assistance, he began living his life with a definite end in sight. With the help of a community palliative care physician -- Ottawa has three wonderful ones, invariably described as angels -- he regained enough strength to return to the ocean community where his family lived.

He visited for two weeks, mended fences, breathed in the sea air. When he returned to Ottawa, where he had re-created a wild version of his entire apartment in his small Bruce House bedroom, he had achieved some kind of peace. Friends dropped by to see him, though he declined fairly rapidly after that, and he died at Christmastime. He had wanted to make it to Christmas, says Naster. And he smiles, gently.

We don't instinctively think of people's deaths with a smile. But when someone has been helped to make that transition with as much grace and comfort as humanly possible -- especially after a life too often marked by an absence of grace and comfort -- how could you not smile at such a passing?

Against a great whack of odds, Bruce House regularly reaches out with offers of grace and comfort.

Increasingly, however, they've had to rely on the kindness of both strangers and friends. We live in a meaner age, one that marches to the beat of tax breaks and

offloaded responsibilities. Succumbing to the unrelenting political derision of those who condemn "nanny states," governments have stripped themselves down, thrown off all kinds of burdensome social responsibilities we used to think were fundamental to civilized government. Like never before in recent history, caring for each other has become the discretionary duty of Joe and Joan Average.

While Scott says she hates what this has done to us -- "I'd like to live in a society where everyone is looked after, to some point," she says -- what it means for her in concrete terms is simple. To meet Bruce House's growing needs, which includes an expansion of the Westboro facility, she has to raise more and more money each year. The current construction project means an additional $105,000 requirement, over and above the $250,000 the place needs to raise just to keep operating.

(In fact, Bruce House's biggest fundraiser of the year took place last Wednesday. A Taste for Life saw 40 local restaurants donating 25 per cent of each of the evening's bills to Bruce House and the Snowy Owl AIDS Foundation. The final tally won't be in for a while yet, but organizers are hoping the take will outstrip last year's impressive $47,000. (If you didn't make it out on Wednesday but would still like to offer Bruce House a financial boost, call 729-0911. You can also donate online with your credit card at www.brucehouse.org)

There is a problem here, though, and Scott is almost embarrassed to allude to it. With the pockets of Joe and Joan Average shrinking, organizations that rely on goodwill have found themselves entered into a competition they never wanted. Places like Bruce House must compete for contributions with community hospitals and worthy projects like Roger's House, which will provide palliative care for kids. That makes for very, very tough competition, especially when there shouldn't be competition in the first place.

But Bruce House was founded on the unwavering belief that dignity, in life as in death, is the right of everyone, no matter what the checkered circumstances in a disapproving world. Everyone. How can you argue with that?

A compassionate society, as one palliative care doctor noted in the Citizen series, is one that provides comfort where it is needed. That's a variation on the advice Bob Dylan says he got many years ago from his grandmother: "Be kind, because everyone you'll ever meet is fighting a hard battle."

When we choose not to remember that, we fail our community. We fail people who need us. And we fail ourselves.

© The Ottawa Citizen 2005