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"Unprecedented" abuse case in Switzerland could and should spark debate over tricky balance between surveillance and independence for people in homes

Geneva, Switzerland (GenevaLunch) – The final news item for tonight was an unusually tough one to write, the story about a man in Bern admitting to sexually abusing 114 people who live in homes or institutions for the mentally and physically handicapped.

There were two sources and these were unusually straightforward, so the story should have been easy to write. A special investigation unit in Bern held a press conference and the canton then posted a press release, clear and detailed, on its web site.

Handicapped or disabled or dependent persons: a world of PC, jargon and worse

The first hurdle was language, for the minute you talk about the kind of people who live in these homes you run up against a mix of political correctness, jargon, prejudice and cultural language habits. It’s a daunting task for a writer to decide whether to say these are homes or institutions or both, and if there is a difference what is it? And are these people mentally handicapped or disabled or (uh-oh, PC rules have banned this one) retarded? And what if they have physical handicaps but not mental or vice versa? Are nursing homes for the elderly or those who need nursing, as in physical care, assistance? But what to my parents was a nursing home is now a retirement home, or better yet, extended care centre.

I am used to these editorial hurdles, for I have a daughter I am comfortable describing as mentally handicapped and very slightly physically handicapped. She turned 18 last year, officially an adult for the Swiss system, and she moved from a school boarding programme to a residential home. She would be surprised to hear there is a difference. She enjoys the independence and time away from us, in “her” world. She also loves coming home, which she does most weekends.

Which brings me to the next hurdle for this writer: it’s tough to write a story like this when an arctic breeze cuts through you, which  you know doesn’t come from outside. It comes from seeing one of your fears for your child, and these are many, realized.

We have worried for 18 years about her multiple seizures, up to 300 a day for a few years, and about the possibility she would dash out in front of a car or fall off a swing. We worried about side effects from epilepsy medicaton that controlled the seizures. We fretted when she stopped growing, a side effect of the meds.

She loves to swing: it is one of her great joys in life, and to see her ecstatic smile when she sails through the air is enough to make you realize you must not try to protect her from all dangers, or ban everything that might pose a danger.

Every aspect of the life of a child like ours seems fraught with danger, but as with any child, some dangers must be allowed in order not to over-protect, to help the child live more fully.

So our daughter was given a swing, adult-size, for her 16th birthday. She can do this one thing by herself, when she wants, freely. Freedom is rare and a precious thing if you are a dependent person (state jargon).

We worry when she starts to scream because she can’t tell us if it is pain or anger, or frustration because we don’t know the difference. Remember that she is 18. Sometimes it’s simply adolescent angst, and we feel a sense of communion with other parents, or the parents we were to our son, 22, when he was younger.

And that brings me to hormones and the sexual lives of the mentally handicapped, a taboo subject if ever there was one. The only people I discuss this with are parents of other children with similar problems, or the staff at my dauther’s home. A teenager is a teenager, with longings and wants and needs, to greater or lesser degrees, but often without an understanding of these or any way of dealing with them. Worse, if someone imposes themselves sexually on one of our children, they may not understand they are victims, or understand what is happening, or know whether or not to be upset. The abuse may seem more physical than psychological, or it might not.

That doesn’t make it any less of a crime, of an abuse—an infringement on a core aspect of every person.

The man who was arrested in Bern carefully chose his victims, police say, often people who could not speak, for the obvious reason that this would protect him, and it certainly seems to have delayed his crimes catching up with him.

We invested time in teaching a new staff to work with our now-adult daughter. We have had long discussions about not assuming she cannot understand or that what passes for a lack of communication is often lack of careful “listening” to her non-verbal communication.

When we were hunting for a new home for her and visited one that wasn’t suitable, we weren’t sure she understood what the purpose of the visit was. As we looked at the bedroom they offered, which was more like a hospital than a college dorm room, we heard a loud racket. She had raced off to the other end of the hall, which we hadn’t noticed, and started angrily throwing furniture around the lounge area, to everyone’s astonishment. Message: no thanks, don’t want to live here, Mom and Dad.

Anyone who has lived with someone or who has himself or herself suffered a stroke or lost language, even temporarily, for whatever reason will appreciate that one of the greatest difficulties of being non-verbal and unable to use substitutes such as computers or signing or cards is that no one, absolutely no one, truly knows the extent of the handicap, except the person living with it.

Our greatest challenge is to keep listening, to protect the voice that we don’t hear easily but which is there. To do this we must work closely with the people in our daughter’s home. Some are terrific, some mediocre, most in between but they have a tough job and I admire them for doing it. I need to respect them, to have confidence in them and to rest assured my daughter is happy having them care of her.

Another crime this man has committed is to shake the confidence we try and need to have in the care system. What a shame.

There will be some good coming out of this, though, as it forces to the surface conversations that must take place, about how to maintain a balance between a home where people can live securely and one where suspicion and fear force too many rules. Homes then become institutions. A simple example: do you lock bedroom doors at night to keep residents safe from abuse, either from other residents or from staff? Our daughter’s home recently installed inobtrusive movement sensors in all doorways so that if a door is opened at night the staff is immediately alerted.

That would not have stopped a staff member intent on abuse, but it’s a start.

One of the parties to these conversations must be my daughter, and others like her. This will indeed require some rich listening skills.

Switzerland sets a good example for care for the handicapped in general, far better than what I’ve seen in the US or UK or France, and I very much hope it can rise to the occasion to find new ways of ensuring that this crime is not repeated.

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