Category Archives: Right to treatment

A Christmas Blog For the Families of the Mentally Ill

I Was A Person

By Marvin Ross, Katherine Flannery Dering and Ilene Flannery Wells

I was originally simply going to reblog Katherine’s wonderful blog called Christmas Past and Present but then, yesterday, I read Ilene’s poem about her brother on the eighth day of Christmas from the 12 Days of Christmas blog and found it so moving that I wanted to share it as well. But first a little digression.

Every couple of Saturdays, I drive to Toronto to have lunch with friends. My route takes me through the heart of downtown Toronto up Yonge St from the Gardiner Expressway. This past Saturday was the first cold day of the year and, of course, I pass numerous bodies in sleeping bags on the sidewalk. Some of our homeless and likely mentally ill citizens.

I also know from past experiences going into Toronto for meetings that had I gone to the next main street west of Yonge, Bay St and the financial capital of Canada, I would have seen the very same. On weekdays, I’ve seen bankers, stock brokers and others stepping over and around these people. Our treatment of the homeless and mentally ill is shameful in both Canada and the US.

I’m writing from Canada and Katherine and Ilene from the US but our advocacy is the same. Here they are:

Christmas Past and Present by Katherine Flannery Dering:

About five months after my family moved to Switzerland in 1959, Mother went into labor early, with what we thought would be her eighth child. After three weeks of complete bed rest, the surprise twin babies – eighth and ninth – were born Christmas Day.

How auspicious!  Paul was so beautiful, with his blond curls and long, lanky body!  Even his fingers were long and elegant.  Ilene, two pounds smaller than Paul, was tiny and had straight dark hair and intense dark eyes set into a little round face.  She looked like the Japanese dolls, friends had sent us from Occupied Japan a few years before.

The twins were baptized a few weeks later in a tiny, Medieval stone church in the nearby town of Versoix, each of them dressed in a piece of the Christening gown my father and the older seven children had been baptized in.  My older sister Sheila and I (first and second of the eventual ten) held them for the service, filling in for the official godparents, who were back in the States.

On Christmas mornings, for all the years that the twins were growing up, the ten of us kids (our tenth – and last – child, Julia, was born two years after the twins) woke before dawn. We waited at the top of the stairs in our pajamas, our dog Charlie whining and whimpering in the excitement, until Mother and Dad went downstairs and turned on the tree lights.  Once they gave us the go ahead, we all rushed down to the living room, big kids looking out for little kids, and opened our presents in a frenzy of ripping paper and squeals and barking and the beeping and clanking of new toys.

Someone put Christmas music on the record player.

O little town of Bethlehem/how still we see thee lie./Above thy deep and dreamless sleep/the silent stars go by.

 … Our one perfect day of the year.

After presents had been opened, we older girls helped Mother fix a big breakfast of bacon and eggs that we ate in the dining room.  The candles on the Advent wreath, changed out from their pink and lavender to red in honor of the day, blazed all morning.  There were too many of us to go to church together, so those who hadn’t been to Midnight Mass drifted off to Mass in twos and threes.

From noon on, Christmas changed over to the twins’ birthday. Following family birthday tradition, Ilene didn’t have to help with dishes or set the table, the usual girl chores.  Both she and Paul got to laze around in the living room and ask other people to bring them a soda or a glass of juice while they played with their new toys or watched some old movie on TV, which they got to choose.  At dinner, while Dad read the gospel from the Christmas Mass, Paul and Ilene got to relight the red candles on the Advent Wreath.  Mother carried in the roast beef with great ceremony and placed it in front of Dad, and the twins got their pick of the roast – they usually chose the ends, valuable mostly because there were only two of them – and they were served first. Our ten sequined, red felt Christmas stockings hung from the dining room fireplace mantle.  Above them, the little brass angels of the Swedish chimes, pushed by the rising heat of little candles, clanged against bells as they swung by.

Dessert was always the same – two layer-cakes in the shape of a Christmas tree, one white, one chocolate, both of them made from Betty Crocker mixes and decorated with green frosting and little globs of red, blue and yellow frosting made to look like Christmas tree ornaments.  After the dinner plates were cleared away, Sheila, Mary Grace or I would go out to the kitchen to light the candles on the cakes.  The twins would squirm and grin kitty-corner from each other at the long table.  When we gave the signal, Johnny or Patrick would turn off the lights and start the singing and we’d deliver the cakes and birthday presents by the light of all the candles.

Fast forward to today

The above is an excerpt from Shot in the Head, A Sister’s Memoir, a Brother’s Struggle, my memoir about my family, and more specifically about taking care of our brother, Paul.

all I want for christmas is hr2646-2

Little did we know back in 1966 when the five little kids posed for this picture – Charlotte, Monica, Paul, Ilene and Julia – how it would all turn out.  Our beautiful baby Paul grew into a handsome teenager, full of promise…

…until he succumbed to a psychotic episode at age 16. Christmas was never the same again for our family.  Despite frantic efforts to get him psychiatric care, Schizophrenia killed the brother we knew and left in his place a confused, delusional man, who had no more than a few scattered minutes of sanity ever again. And his situation worsened over the years, as most of our psychiatric facilities were closed and fewer and fewer facilities were available for the care of those most seriously ill.

Our system of care for people with serious mental illnesses in our country is simply not working.  4% of our population suffers from a serious mental illness, and many of them, like my brother Paul, never really recover, even if they stay on medication. Only about one third of people diagnosed with schizophrenia recover, a third cycle in and out, and a third never achieve any appreciable recovery. Many of these are homeless or in jail, due to the lack of appropriate care facilities and supportive housing.

The Twelve Days of Christmas – On The 8th Day of Christmas, My True Love Gave to Me – Eight Maids A-Milking…

Dedicated to the Flannery family and to all caregivers everywhere who have been subjected to this injustice and neglect of their loved ones who were left abandoned and had to learn to care for their beloved ones on their own.

By: Ilene Flannery Wells, Paul’s Twin Sister

Tall Paul, Pure of Heart
Was born on Christmas Day
The 8th child born to John and Mary Kay
The 9th child came just
15 minutes later!
Oh, what a Blessed day!

His bright Blue eyes
And winning smile
Made it easy for all
To love Tall Paul
Including his two
younger sisters

For his first 16 years
He graced our presence
With laughter and fun
And gregarious charm
Paul skated through life
Always pushing the edge
Until his Brain took a hit
From his gene pool and drugs

Schizophrenia they said
One doctor after another
He’ll never recover
You must think of the others
So off Paul went
To Rockland State Hospital
And then Wingdale where
Tall Paul, Pure of Heart

James Bond
Clint Eastwood
Dick Butkus
A King Fu Movie Star…
From Korea
Who made millions of dollars
Paul wrote to his mother
In a Mother’s Day card
A camera was Imbedded
In his head
Which had been shot off
By Dickie and Homer
And maybe there were others
I couldn’t keep track
The Last of the Mohegans also
Invaded his thoughts but
Perhaps that was due to the fact
Paul was scalped at 16

When Wingdale closed
Paul watched a different train
Go by each day and
Dreamed of hopping on
He took a few rides in his time
But that was on the Harlem line
These were chugging by
The sides of the Hudson River

For 20 years
Paul walked and paced the halls
Of crumbling Psychiatric wards
Not for lack of trying Paul was
No better and no worse
Than the day he became
A different Paul than the
Twin I Knew from birth

His life was so rough
But that was just the beginning
Upon his release
They said he was competent enough
To make his own decisions
Mary Kay and John
Were now years gone
So we siblings
Stepped In

For 9 more years
Paul struggled as did we
Our love wasn’t enough
We were one step behind
One bad decision after another
Made not by Paul or
His brothers and sisters
These decisions which inflicted Trauma
Were made by what is called
The Community Mental Health System

The numbers in prison, let alone homeless
Are so astoundingly large
That the prisons are now
Our new Asylums
A million sad souls getting
Kicked while they’re down
No treatment for you
Since you don’t know
You’re even around

Tall Paul, Pure of Heart
Didn’t know he was sick
But he was a lucky one
He never was homeless
Never even arrested
That’s now the norm but
Don’t get me wrong
There were no bed of roses

Group Homes
Adult Homes
Assisted Living Apartments
What Assistance? Are you kidding?
Foot fungus, lack of food
While the case workers looked on
Paul needed to learn
To live on his own
Paul “menaced” the public
And was picked up by police
Well, they were trying
To steal his kidneys after all
His lack of insight continued
It never abated
Even when cancer came
And took him away

That last year in the nursing home
So caring so warm
Was like a dream come true
Even though we knew
It wouldn’t last long
He was a person, the Governor,
A nickname he earned
A friend, and a brother again
Why did it take cancer to receive
The care he so richly deserved?

It’s been 7 years now and
The “system” is worse, not better
It is just so absurd
That the sickest among us
Get no treatment at all!

So on the 8th day of Christmas
Think of Tall Paul, Pure of Heart
The 8th child of Mary Kay and John
And remembered by his
Sisters and Brothers of
Perpetual Determination

Ilene and


Reflections on the Death of an 11 Year Old Aboriginal Girl Who Was Allowed to Forgo Chemo

stone of madnessBy Dr David Laing Dawson

I can think of a few metaphors that aptly express why one shouldn’t blog about this subject: mine field, thin ice, bramble bush, angels fear to tread. But…

We decided many years ago that we, (and by “we” I mean our organized educated societies, our western countries ruled by civil law), should protect our children, even protect them from their own parents if necessary. Well, truthfully, it wasn’t that many years ago, just over a hundred, and it seems we decided we needed to protect our pets and our farm animals a full generation before deciding we also needed to protect our children. But we did decide we really shouldn’t allow child labour, or pretend that sex is consensual before age 14 then 16, or marry off unwilling teenage females, or cage and beat or starve our toddlers. We know we should not allow a 13 year old to fly an airplane because she wants to, or drive a car before age 16, and even then only with training and supervision.

We expect parents to take their children for adequate medical care, and if they are not doing this we intervene. If we find that a hyper religious Christian couple have caged their 10 year old in a rat-infested basement for two weeks as correction for lying, or taking the Lord’s name in vain, we intervene. We take the child away. It is not a process without complexity but we do act. We do not allow parents to refuse treatment for TB if their child suffers from this disease.

So why on earth do we allow a ten year old, or a 12 year old, to decide with her parents, to forgo life-saving cancer treatment? Why this incredibly deferential attitude toward primitive thought and quackery when it is coming from a person or persons of First Nation Heritage? We wouldn’t buy it from a Roma, a Seventh Day Adventist, a practitioner of Santeria, an Irish healer, a Celtic priest, a new-age diva. So what makes us so cautious, so generous with the fictions of the ancient healing practices of First Nations?

Now, don’t get me wrong. I’m not against ritual and faith and any kind of spiritual or psychic healing practices if they give comfort and hope and do not replace actual proven treatment when such treatment exists. Go ahead and burn the incense, do the cupping, chew the wheat grass, wear the garlic, swallow the echinacea, and acupressure to your heart’s content, but if a bacterial pneumonia is the problem, for God’s sake take the antibiotics as well.

I will try to answer my own question because if that were my child, or grandchild, Family and Child Services and the court would have, I’m sure, taken my child into temporary custody and ensured that she be treated.

I think it is the problem of lingering racism and guilt, the guilt being a response to our own history and perhaps lingering hints of racism. My and your ancestors certainly did not treat the First Nations people well. Even when our intentions were basically good, the solutions proved destructive: residential schools, Reserves. So we feel guilty, and angry. Guilty that we still have people living in our rich country in third world conditions. Suicide is endemic, alcoholism epidemic. Many of the young men are in prison, many of the young women disappear or die prematurely. The fire truck does not work; the water treatment system fails. Nepotism flourishes.

I had dinner with the chief of a Northern Ontario band many years ago. He was in a wheel chair having lost his legs on a rail road track in what is often called “an alcohol related accident”.  He was clever and wise and had something of a sardonic sense of humor.  For some reason I was curious about the apparent lack of curse words in his language, and asked about this. He smiled at me and said, “You must remember that the Indian had nothing to be angry about before the white man came.”

Well, I know that is not really true, and I know that they are no more likely to be in touch with, in harmony with, the mysteries of the universe, energies of the wind and rain, the forest animals, the living earth itself than I am (or at least David Suzuki). Though I am sure their ancestors were more in touch with night and day and rain and wind and birth and death, with drought and storm, as were mine living  in their sod huts, cooking over peat fires and herding their sheep through the rocky pastures of the Orkney Islands, unaware, I’m sure, of Galileo’s discoveries, or of Dr. John Snow  staunching the spread of Cholera in London.

No. They don’t have any special lock on the magic of the universe, the spirits of the animal kingdom, the nature of healing, the mysteries of the our cells and organs, of our mortality. They are merely human, like you and I. And Canadian. Living in the twenty first century, in centrally heated houses, with TV and the internet, driving cars, burning fossil fuels. And their children deserve the same protection as mine do from the superstitious beliefs of our ancestors.

Magic, Shamanism and Modern Science

stone of madnessBy Dr David Laing Dawson

This was in the news today:

“The judge deciding whether an aboriginal girl can forgo conventional cancer treatment for traditional healing questioned whether forcing chemotherapy would be “imposing our world view on First Nations.” ”

This child has an acute form of Leukemia that is known to be 100% fatal untreated, but, unlike most cancers, has a 90 to 95% chance of remission and cure if treated. That is the science of it. The western medical science.

The judge’s use of the term “world view” struck a cord with me, but rather than wading into this mine-field of misperception, mistrust, and down right denial of science, I will relate a story much closer to the reality of human behavior and human motivation.

Some years ago I was consulting in Northern Ontario when I found I had an appointment with an Ojibway medicine man in the town of Kenora. He was something of an itinerant medicine man, healer, shaman, traveling to reserves in Manitoba and Ontario as needed. He was a tall man, quite imposing, with dark eyes and a charismatic intensity. He introduced himself and told his story. He was scheduled (now “scheduled” is not quite the right word here, because it certainly was our Industrial Revolution that imposed scheduling) to perform, in the near future, a second try at exorcising a powerful and evil spirit that had invaded a woman’s body. He had performed one ceremony and failed, he explained. The beast was still within this woman and destroying her and making her behave in a psychotic manner. This invading spirit, this evil, was particularly pernicious (my word), and, once out of the suffering patient, was apt to invade an onlooker.

He invited me to attend the ceremony.

“But”, he said, “You should bring some holy water to protect yourself.” He said this with such conviction that I was quite prepared to visit the Catholic Church to ask the priest if I might borrow a little from the chalice.

We talked some more, and I explored and asked what I could about the nature of the ceremony and the woman’s symptoms, and I agreed to come when summoned. But as he got up to leave I was still puzzled by something. So I asked, hesitatingly, “But really, why would you want to have me at this ceremony?”

He looked at me and said, “You might bring some of those pills of yours.”

And then he left.

And I thought, a smart man, covering all his bases. Native spiritualism, Catholic magic, and Western Medicine. And also, I thought, a true reflection of where we really are: hankering for the magic world of the spirit, the certainty and comfort of religion, but relying on the wisdom of enlightenment and science. I would take some fast-acting anti-psychotic medication with me when called.