My Secret is Out

August 2009: Mom is 52 years old in the photo

The CBC radio show White Coat Black Art, with Dr. Brian Goldman released Jan. 8, 2011 discussed the misuse of Privacy Law. Instead of being helpful, my mother and her loved ones suffered because Privacy Law.  The only person who was benefitting from the Privacy restrictions was my abusive father. Dr. Goldman's interview revealed a small piece of the abuse that has tainted my family for decades. Plus the role that Privacy played in my mother's demise.

Listen to the Podcast here:  http://www.cbc.ca/whitecoat/blog/2011/01/07/patient-privacy/

The root of the problem is that my father's legal power and control is stronger than my mother's ability to defend herself.  Privacy Law is merely the enabling mechanism--and in theory should be the easiest to correct.  However, the secrecy provided and protected by Privacy Law enabled my father to perpetuate abuse with impunity with no checks and balances.  Using my mother's case, I provided several perversions of Privacy Law:

Privacy Law allowed my father to shield his abusive actions from scrutiny.  The organizations and individuals who are mandated to protect and care my mother, instead blindly followed my father's abusive instructions.

Privacy Law allowed my mother to be moved to undisclosed locations so that she was isolated from her loved ones during her time of need.  My father treated my mother like a pawn in a shell game, moving her eight times between four institutions in one year, making it difficult for her loved ones to reunite with her.

Privacy Law prevented my mother from sharing her medical information with her loved ones--which was particularly cruel because my father claimed my mother's disease was genetic.  According to him, I was genetically fated to follow in my mother's dementia.  I was unable to pursue my own healthcare without a genetic confirmation of my mother's illness.  My father's  misuse of Privacy Law prevented my own healthcare autonomy.

Privacy Law caused my mother confusion and distress.  My mother had stated that she would willingly share information with her loved ones.  Her dignity was stripped when her health care team ignored her stated wishes in favour of my father's abusive instructions.

Dr. Goldman had followed up his interview on Privacy with the Privacy Commissioner of Ontario.  She claimed that my mother's issues were not a privacy issue but a decision making issue.  She refused to acknowledge the role that Privacy Law had in my mother's demise.  She refused to acknowledge that the Privacy Law was my father's shield.  Privacy Law provided the cloak of secrecy, preventing proper scrutiny of his actions.

The fact of the matter is that it would have only taken one person, who had access to the "private information" to stand up to my father, especially when his instructions were contrary to the Long Term Care Facility's Bill of Rights.

Allowing the power of the Bill or Rights legislation to override my father's improper use of Privacy Law would have gone a long way in solving my mother's and her loved ones' distress.

The big questions are which law is most powerful- decision making or human rights?

And what protections are in place when a law is being misused?

So, since the Privacy Commissioner shuffled the responsibility for my mother's abuse from Privacy Law to Decision Making Law, and let's pursue the solution she suggested:  Civil litigation.

In a time of heightened crisis, the option provided to my mom and her family was expensive civil litigation.  This is a solution that is described in the Globe and Mail as "legal fees exhausting their financial resources before they even reach a trial."
m.theglobeandmail.com/news/national/ontario-courts-only-open-to-the-rich-judge-warns/article12942343?service=mobile


So, to defend my mother's human rights, I needed to be willing to bankrupt my family.  It is a sham that the price to protect my mother's rights is prohibitively expensive.  The costs should be born by the abuser.

But the Privacy Commissioner did hit on the nerve of the issue.  It is undeniable that my mother has been emotionally, financially and psychologically abused by my father.  Unfortunately none of these acts are not considered a crime in Canada.  In fact, at every turn, it seemed the law seemed skewed to enable my father's abuse rather than protect my vulnerable mother's rights.  Because his acts are considered "civil" and not "criminal" wrongs, the costs to defend them are extracted from the victims.

In Canada, domestic abuse is considered a “family problem” unless there is physical harm ie. broken bones. It ignores the harm and pain caused by the abuse and isolation when the method is psychological and financial. Domestic abuse grows unchecked and unpunished all the time.  Domestic abuse flourishes under the watch of top administrators, similar to other historic human rights abuse issues. 

And yet, because his actions are hidden by the secrecy, provided by Privacy Law, it makes the only solution-- civil litigation--even more difficult.  A final irony is that my mother and her loved ones are denied from accessing information helpful for protecting her human rights.

Privacy Law creates quite the conundrum.