Linda's Legacy
A couple of months ago, I sat in Catherine Zahn's (head of CAMH) office. I had to bully
my way through her door, never having been invited in. First thing I learned was that
we're the same age, both invested in the same system, but that is where similarities
ended. I was there to object to a CAMH-MARS celebration of Innovation and scientific
research.
I have met and struggled with every hospital head who sat in proud settings replete with
gatekeepers, privilege, and grand ambitions, mostly because of the thirty plus years of
fighting for the rights and lives of those deemed chronic and therefore swept away to
the streets or rooming and boarding homes or seniors housing even when the patient
was only in their thirties or forties. People who had failed to transform, who had no
powerful or wealthy relatives to donate towards Chairs or elaborate and dazzling
machines that can look into the brain and discover...that machines and science, like
tears, are not enough.
Linda Chamberlain also shares the same number of years. Pure luck got her this far,
not mental health systems, not in- or after-care. And now statistics have caught up with
her, that one statistic hanging over the heads of every man and woman labelled chronic
(read useless, incurable, incapable of insight, an embarrassment amid all the hype
about innovation and discovery) that we die on average 25 years earlier than the
general population. Linda has bone cancer, though she doesn't intend on dying Any
Time Soon, as the title of her glorious book declares.
Mental Health systems don't like to look back, rarely if ever acknowledge their mistakes,
and we are the biggest and baddest of those travesties, universally poor, locked in
devastating housing, wracked by the brutal effects of early anti-psychotics, subject to
rigid controls and demeaning interventions wielded by any worker with a certificate or
degree. Assumptions about our folks are all negatively based on deficits and class
prejudice, academic versus experiential learning, and the weight of the labels
smothering us.
Linda, irrepressible and irreverent, shockingly pink, with a laugh that can rattle walls,
generous and flooded with empathy and love for her peers, is a stand out wherever she
is, whatever she chooses to talk about. Her story, told in her own words, is filled with
danger and dismissal, physical restraints and over-medication, high risk and
homelessness, illiteracy and longing. Still, like a great champion, she never succumbed
to despair, never yielded to the hard cold comfort of bitterness and hate.
In many ways a unique individual, in others she mirrors the lives of her peers. Treated
only with meds, little follow-up, seen as disruptive and infantile and scary, she refused
to break or treasure compliance as the greatest good. She wanted more, wanted to
taste life behind a door she could lock, in a place she could decorate and make her
own.
Seems like every few weeks we lose another funny, wonderful character from our
community, brave, annoying, disruptive folks with no reverence for systems or status
or bull, people who can find a little bit of heaven in a hamburger or cigarette or beer.
Good decent people, that the mental health system wishes would disappear, so that
machines and science and the children of the wealthy would be all that's left to wander
the grounds. And the beautiful new buildings.
Linda's is a story they would rather not have told, preferring famous and wealthy
Canadian's on posters extolling the great care received. My last words to Ms. Zahn's
were that we are not returning to obscurity, we are not taking second place to scientific
discoveries. We want to taste the good things in life before statistics pull us from this
earth, and we will fight for that.
.
We really have little time and less to lose.
Pat Capponi