Bullying in the Huntington's Disease Community

June 1, 2018

Awareness of the destructive consequences of bullying has hit an all time high in recent years with news stories of incessant bullying that has resulted in suicides, mental illness, miserable day to day lives and even school shootings. Those of us in the Huntington's Disease community are not immune to becoming targets of this behaviour. Some of this bullying is even perpetrated by those within the HD community itself.

 

 

In 2012, 9 year old Kathleen Edward died from complications of Juvenile Huntington's Disease surrounded by 30 of her family and friends.  Two years before her death she was the victim of what was termed as "ghoulish" bullying from an adult neighbour, reported Daily News. It came in the form of cyber bullying where doctored photos of her were posted online of the girl with her eyes closed and a skull and crossbones beneath her eyes.  A photo of her mother who had passed away the year before from Huntington's Disease was also posted showing her being cradled by the Grim Reaper. The emotional turmoil this would have caused must have been extraordinary.  Many people around the world rallied to the cause, bringing about awareness of the girl's plight and of the disease itself which led to the eventual ousting of the neighbour from the community.

 

Another case involves Lorraine Parkin, a mother of three, who suffers from Huntington's Disease. She alleges that her caregiver, whom she hired as a means to stay in her own home, bullied her so badly that she was forced to leave her home and take refuge in a long term care facility.  She charges that her 54 year old "experienced" caregiver dragged her around like a rag doll and even made her eat in a horizontal position putting her at great risk of choking. Her hair was left "chronically knotted". According to The Sun, she was even left out in the sun without sunscreen until she became blistered. She is seeking justice.

 

There are many forms of bullying, some of which are direct and others indirect. 

 

There is a form of bullying that I've seen a lot of online, especially in some supposed support groups aimed indirectly at people. It is insidious in nature and is one that I personally have had to deal with on more than one occasion.  I don't know if it has a name, to be honest, but it is a very crafty form of bullying which seeks people out to find a common weakness that many in the HD community have.  That weakness is guilt. I will call it HD baby shaming.

 

In 2004, I was told by a coworker that my wife should never have been born, by a coworker.  While my wife had never been tested for HD, her mother had tested positive in 1999 and after much research I came to the conclusion that my wife was symptomatic with the same disease. It was also around that time that I noticed a question from a young woman online who had tested positive for the gene mutation that causes HD and she was torn, since she always had wanted to have children but felt that maybe she shouldn't. Many of the comments to her query were not very nice and some were downright abusive. 

 

 

In 2012, it became necessary for my wife to have a wheelchair, but it had to be specialized and that was not available through the Red Cross, so I started a GoFundMe to see if that would help. No one donated but they really didn't get a chance. Almost immediately I received messages telling me that my wife and also my children should never have been born and that they were nothing more than an abomination.  The sick that I felt from those messages was profound and made me feel incredible guilt, even though we never knew about HD before we had children. 

 

There are many reasons why people have children, but I can't think of one of those reasons that gives anyone the right to express their opinion regarding another person's choices. This form of bullying was the one that I felt would never come from within the HD community and yet it does. Like I said before it is insidious and it is rampant.

 

Sometimes, education on a particular subject will give people some understanding. In this case, understanding of why people have children in the HD community. A study, published in 2010 makes a very good attempt of explaining very clearly the reasons why people in the Huntington's community procreate.  It is my hope that people will look at it, especially the results section, so that they might find in them some understanding. You can read the study by clicking here.

 

And for some people, maybe they can realize that some things are simply none of their business.

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