Photo credit: Michael Tercha, Chicago Tribune

Photo credit: Michael Tercha, Chicago Tribune

On Saturday morning of Labour Day weekend 2014, Frank Stack, 82, left his house in Elmhurst, Illinois and drove to the group home where his son, Francis, 48, lived with five other men with developmental disabilities. Mr. Stack, a regular visitor to the home, told the supervisor on duty he’d have his son back later that day.

Next, the father drove to another group home where his daughter, Mary, 57 also developmentally disabled, resided. He told staff there that his wife, Joan, who was very ill, wanted to see her daughter.

Frank Stack brought his two children to the home where they’d been raised alongside two nondisabled sisters, Gloria and Barbara.

Raising Francis and Mary had been challenging for the Stacks. Both children had profound intellectual disabilities. Francis was nonverbal, prone to seizures and couldn’t use the bathroom independently. Mary could say a few words but required care and help with dressing, eating and other basic tasks of life.

Later that same evening, after his wife Joan’s hospice aides had left for the day, Mr. Stack placed a call to the supervisor at Francis’ home. “I need you to do me a favour and call my daughter Gloria. This is her number. Tell her there are four bodies here. I just shot Francis, Mary and Joan and I’m about to shoot myself.”

Police arrived to find Frank Stack lying near the bodies of his wife, son and daughter.

Many elderly parents caring for an adult child with a disability in Ontario today are in crisis or will soon experience a crisis. For years, the failure of government to invest in community based supportive housing for adults with a developmental disability has forced some parents, who can no longer manage, to abandon their children in hospitals or seek placement in long-term care centres. These facilities are not geared to the needs of people with developmental disabilities, particularly those who are otherwise healthy.

But this was not the case with Frank Stack.

Sometimes, the lack of adequate finances to meet the on-going needs of a disabled family member causes a caregiver to resort to desperate measures.

Again, this was not the case with Frank Stack.

In Ontario and in the United States, special needs trusts can be put in place and managed to ensure the continued financial security of a developmentally handicapped family member. The important thing is to plan.

Frank Stack had a solid financial plan in place for Francis and Mary.

All parents of children with disabilities worry about the future of their children. The over-riding fear for Frank Stack and others, regardless of planning, is simply: who will love and care for my child as much as I do after I’m gone?

Even the best of plans can go awry. Over the past ten to fifteen years, funding for community based group homes for those with disabilities has been limited and targeted only for people coming out of institutions, or crown wards who have become adults, coming out of the child welfare system.

Statistics Canada’s Participation and Activity Limitation Survey (PALS) reports that 12.4 percent of Canada’s population (34,108,072 in 2010), or 3.6 million people, have a form of disability.

A lack of adequate service in the form of funds, and suitable programming provided to families for the disabled person in their charge, is often cited as the reason for murder.

These circumstances did not apply to Francis and Mary Stack.

So why don’t more caregivers/parents who don’t receive adequate funding and support murder their children? There are thousands of families in this position. And why do some who do have what would appear as the perfect set-up: sufficient money, suitable housing and programming, and trusts put in place, murder their children?

I have read the case of the Stack murder over and over. In my mind, it is just that: murder. Francis and Mary lived in a caring, supportive group home, according to the article written by Jeff Himmelman. In fact, caregivers in the two facilities where Francis and Mary resided stated that the siblings enjoyed their lives.

The trusts Mr. Stack set up to support his children after his death and the death of his wife were the dream of many parents. Francis and Mary had two non-disabled sisters who, one presumes, would “keep an eye on things” when the parents died.

But Stack chose to murder Francis and Mary, and his wife Joan, before killing himself.

Media, defence lawyers and people with little experience in the lives of the disabled, and who can only imagine how difficult those lives would be, often portray these murders as acts of love and mercy.

What was loving and merciful about the deaths of Francis and Mary Stack?

When Robert Latimer, a Saskatchewan farmer, killed his daughter Tracy in 1993, many portrayed the murder of this severely disabled child as somehow tolerable. Tracy was born with Cerebral Palsy after oxygen deprivation during birth. The CP rendered her a quadriplegic. The many surgeries she’d undergone to try and help her only gave way to more surgeries. Her seizures worsened as time passed. Her pain and suffering were unbearable, her father claimed.

Peter Burns, the Arc’s Chief, (one of the largest advocacy groups for the disabled in the U.S.) says there’s too much of a bias that the lives of people with developmental disabilities really don’t have value; that there’s some sense that these people are better dead then living.

All the fear and rationale do not excuse or explain what should be obvious, and the most compelling reason for allowing those with developmental disabilities to continue with their lives. No one has the right to take the life of another human being.

Why not continue to fight for a better life for them? Search for ways to alleviate their pain, lobby for better housing, fulfilling activities, satisfying jobs. This is hard work, often leading to more dead ends than open roads.

And, regardless of our subjective assessment of someone else’s quality of life, shaped by our personal standards, feelings and energy, we may be wrong! Many people with disabilities struggle and suffer. But a helpless, struggling person may have many happy moments is his or her day. Who can truly judge the quality of a life? And snatch it away.

Donna Cohen, a psychologist and professor at the University of South Florida, studies murder-suicides, particularly among ageing caregivers. She says these occurrences are not acts of love but acts of depression and desperation.

I identify with both Frank Stack and Robert Latimer. Like the Stack siblings, our son Matthew was well positioned to carry on with a good quality of life if my husband and I predeceased him. He lived in his own home with a wonderful caregiver. Should he out-live her, Matthew’s affiliate agency would have searched for a replacement. The trust fund we set up for him would have been more than adequate to meet his financial needs. His brother and sister who loved him were committed to supervising his care and well-being.

Like Tracy Latimer, Matthew was born with severe brain damage after suffering oxygen loss during birth. He didn’t walk until he was seven, and never used words to communicate. He suffered from a cyclical mental illness diagnosed as agitated depression. During the down cycles, his self-injurious behaviour nearly caused his death many times. His mental anguish was devastating for him and soul destroying for us.

And like Frank Stack, my husband and I worried about our son’s life after we were gone, even though he was well positioned. But we knew that despite his problems Matthew had many happy days. He enjoyed his routine, his food and his companions, who loved him in return.

And, like Robert Latimer’s daughter Tracy, our son Matthew suffered surgeries and pain. There didn’t seem to be a cure for his agitated depression which was worsening as he aged. But Matthew had wonderful doctors who never gave up trying to make him more comfortable. I had to trust that would continue.

Robert Latimer claims he did the right thing for Tracy: “She’d had enough, so that was the priority,” he was quoted as saying in an interview.

Was the pain and anguish he felt over the suffering of his daughter replaced by a new pain and anguish after he killed her? Robert Latimer also said in an interview he never expected that his actions would create such a maelstrom – explaining that in his mind, he’d done the right thing.

By killing challenged individuals, whose pain is the killer trying to eliminate? And does the presence of pain render a life not worth living?

In his recent article, Jeff Himmelman wrote: ‘there is a kind of mystery at the heart of situations like this that the criminal justice system doesn’t resolve, even if morally we know that the right answer is that murder is murder. Francis’ roommate understood his friend had been murdered and feared for his own life. But David Clark, who received the fateful call from Frank Stack, said he wished he could have done more for the Stacks. He said: ‘Francis and Mary came from a loving family and that’s what needs to be portrayed.’

Would a suitable analysis of such acts be: murder by complicated grief? If so, how would the criminal justice system impose punishment?

Can a murder with a particular motive be seen in a different light when compared to another murder?

Is it possible to sympathize with someone who has intentionally and illegally taken another life? Can we re-categorize their actions as anything but murder by downgrading his or her offence?

And, if we do sympathize with the motive behind a particular murder, do we trivialize the life of the person who has been killed? Particularly given that they had no say in the matter?

Might this sympathy endanger the lives of people in similar circumstances? Should the law entertain the idea of an “understandable” motive?

Or, should no such distinctions be made?

Perhaps some of the most important questions we might ask have to do with our interpretation of human life. Are lives characterized by dependence on others, by chronic pain, lack of mobility, limited awareness of the world around them and limited or no ability to communicate, worthy of living?

Should all human beings share the same rights?

The questions challenge the non-disabled to think deeply about how they view humanity. The answers affect the kind of world everyone has a right to live in.

What do you think? Vote and leave your comments below.

You can read more about the Stack and Latimer cases here:

New York Times: Four Bodies in Elmhurst

CBC: Compassionate Homicide, the Law, and Robert Latimer

Use of direct quotes from Jeff Himmelman’s article: Four Bodies in Elmhurst

And with the guidance of: Jim Triantafilou, E.D. Brampton Caledon Community Living, and Richard Hicken, freelance editor, web marketer, and current Master’s student at the University of Toronto.

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In Memory of Graham

by donnak on December 2, 2015

Graham_brown_web pacman_smallLast week I received something writers dream about, an email from a reader letting me know how much she enjoyed my non-fiction narrative, Finding Matthew. The first paragraph of her message summarized my goal for the book.

Anne MacLellan said she appreciated how I spoke of Matthew’s personality and his relationships with others. So many people, she said, who’ve never known a person with special needs, don’t understand how much can be learned from them.

Anne’s son, Graham, died suddenly July 15, 2015, at age 25 from SUDEP (Sudden Unexpected Death in Epilepsy).

Throughout his life, regardless of the usual list of nay-saying professionals, Graham learned to express his needs and wishes, demonstrate his sense of humour, and most of all, to confirm his sparkling intelligence.

Graham used stencils to spell out his name. He utilized the Picture Communication Symbols method, (google: speaking4autism) and the Picture Exchange Communication System (PECS). His abilities were enhanced by the Gotalk Communication Device and talking the dictionary.

How ingenious, perceptive and amazing, given Graham’s diagnosis of autism and mood disorder.

For the last 13 years of his life, Graham lived in a wonderful group home where he was respected, honoured and loved. He had a vibrant personality and was full of life with a delightful sense of humour.

This post, in honour of this week’s United Nations’ International Day of Persons with Disabilities, celebrates the life of Graham ‘Grambo’ Brown, a young man of talent, accomplishments and mischief. The following memories are from family and friends.

*****

Graham taught us so much through his love of life, even though his enthusiasm could get very noisy at times! With his ability to convey feelings, perceptions and wants despite being a non-verbal person, his sense of humour and his unique “Graham-ness”, he has been our greatest teacher ever.

When Graham was about 10, his dad took him downtown. They went into a variety store where there was an old free standing Pac Man game. Graham remembered it clearly and twelve years later, drew the remarkable picture at the top of this post.

A part of Graham’s daily routine that he loved, were his crayons. Due to incomplete motor control, Graham preferred to direct a companion to colour for him. He’d choose a shade and hand it over. Then with his finger, he’d trace the area to be coloured. When the page was completed, he’d pick the purple crayon for the background.

Graham’s loud sounds of approval signaled a good job. To finish the piece, he’d spell out, by pointing to a stencil, “1 2 3 Graham Brown”, which the companion artist would print on one side of the page and “Graham Brown”, on the other.

Graham’s crayons were always laid out in precise order and he’d signal if one was missing. Since no one else had his remarkable visual memory, (was it the orange-red or the red-orange or the scarlet that was missing?) he’d point to the missing colour using a swatch created for that purpose. In Graham’s art book, specific pages were assigned to all his artist partners.

Graham loved cut and paste work. He spelled out the words for staff to print. Next, he’d tape the words on the walls of his room. Many layers would accumulate before he’d decide to start over.

Graham’s favourite things included Tigger and the three Piglets, his stuffed lovies, which were his constant companions and the subject of intense searches when they got misplaced. He loved books and being read to, especially by his dad and sister. Graham’s Social Story Books for Autism helped him understand others expectations, establish routines and make smooth transitions.

Graham’s Thomas backpack went everywhere with him. Thomas the Tank engines were also a favourite. When visiting, Graham liked to wear multiple layers of clothing, regardless of the weather. He particularly loved wearing one hockey shirt when his family spent time with him in his group home. The day after family visits was movie day when Graham enjoyed Disney videos.

On his memorial page, workers posted loving messages, fond memories and incredible insight into Graham’s compelling charm. One said she loved spending her days with him, no matter how long they took. Another recalled that Graham opened her eyes to a world she never knew existed. Even though autism takes hold in many different forms, she said, it doesn’t mean that anything is damaged inside. She loved that Graham was able to joke around, hold a conversation and let you know exactly what he wanted.

Another staff member, at first intimidated by his six foot ten inch height, soon found a gentle giant in Graham. She loved the way he rolled his hot dogs in his shirt, peeling off the skin before eating them. The way he jumped and twirled and screeched at the top of his lungs while watching his Disney movies. How he took her hand to slow dance to one of the Disney songs. How he made her feel special by seeking her out because he didn’t want anyone else helping with his colouring and cut and paste. Their walks to the mailbox, always holding hands.

Yet another said she loved Graham’s ability to communicate using an array of vocalizations. Her favourites were his hisses and clicks and his mischievous chuckle when he had gotten the best of her.

Graham’s family realized that he had never been able to say “I love you”. They taught him the signs for I love you, and Mom loves Graham. Anne, Graham’s mother, would sign the I love you message then prompt him to respond. He’d often start with I love and point to his dad. Anne would then ask, “Who else do you love?” To tease her, he’d answer I love Graham, accompanied by a cute smile. When Anne asked again, the answers referenced his sister and brother-in-law. Eventually, Graham would tell his mother he loved her, giggling at his joke.

Graham Brown brought a profound love to his family which they would never have experienced without him. At the same time, he typifies the complexity that is every person. The depth. The honesty, the fun loving spirit. The look at me, I’m important. All six foot ten of me.

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Six Children’s Books on Diversity and Acceptance of Self and Others

November 15, 2015

Do you have a child or student who feels different from his/her friends and schoolmates? Is self-esteem becoming a problem? Whether the “difference” is real or imagined, the experience is painful. The six books listed here at friendshipcircle.org are an excellent resource to help children understand the hurt caused by teasing or shunning another because of a […]

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Another Special Parents Confidential Podcast Interview

October 19, 2015

John Pellegrini is the parent advocate of a child with a developmental disability and the host of a podcast/blog, Special Parents Confidential. His weekly episodes address pertinent issues facing families of children with special needs. Finding Matthew found its way to John, who read the book and wanted to share Matthew’s life experiences with his […]

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Don’t Disrespect People with Developmental Disabilities

July 14, 2015

As the mother of Matthew, a young man with developmental disabilities, I often had to “handle” strangers who chose to make comments about my son, in front of him. Matthew wasn’t stupid and he wasn’t deaf. And he understood everything that was said. The absolute worst example of this kind of witlessness happened when my […]

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An Interview with Able Radio in the UK

July 1, 2015

Able Radio was created to give a voice to people with disabilities. This national station has since expanded into training, forming Able Academy which uses the media environment to develop skills that change its clients’ lives; a video production service Able Media which puts clients in the driving seat, not just commissioning a production, but […]

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Special Parents Confidential Podcast

June 14, 2015

John Pellegrini is the parent advocate of a child with a developmental disability and the host of a podcast/blog, Special Parents Confidential. His weekly episodes address pertinent issues facing families of children with special needs. Finding Matthew found its way to John, who read the book and wanted to share Matthew’s life experiences with his audience. Thank you to […]

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Review from Non Fiction Book Reviews

May 18, 2015

Finding Matthew has been reviewed by Prasanna Bidkar of “Non Fiction Book Reviews”: http://bookreviews.infoversant.com/finding-matthew-a-tale-of-love-courage-and-perseverance/ Finding Matthew is also available on Amazon India: http://www.amazon.in/Finding-Matthew-Illness-Brother-Extraordinary/dp/1927483352/  

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People with Developmental Disabilities: Canadian Book Clubs Review

February 24, 2015

Finding Matthew has been reviewed by Gail Knutson of CanadianBookClubs.com. Please check out this honest review. http://www.canadianbookclubs.com/bkrv2/?post_type=topic&p=361

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Finding Matthew Featured at Special Needs Book Review

February 19, 2015

Finding Matthew is featured this week on specialneedsbookreview.com. Lorna at Special Needs Book Review has put together a wonderful review/summary of the book. Here’s an excerpt: “There are so many books how can one choose which ones to read? Which are excellent parenting books, inspirational books, books that will make a lasting impression on how […]

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