Monday, June 21, 2010

RESPONSIBILITIES


"You may be aware that all people with Down’s syndrome have an extra copy of chromosome 21. Many eminent scientists believe chromosome 21 holds the key to a greater understanding and possible prevention of Alzheimer’s disease, certain types of cancers, heart disease and many more health problems that affect all of us. Such understanding of human genes is leading to realistic prospects of developing therapeutic approaches for these sometimes complicated health problems that are associated with the condition and that will, in future, lead to improvements in the health of the general population."

The above is a paragraph from a letter to be forwarded to UK MPs encouraging them to join an All Party Parliamentary Group dealing with Down's syndrome.

Crime fiction books can consider many subjects from the past, such as rise of the Nazis, or comment on many of the social issues of the present such as immigration. But I believe authors have a responsibility when dealing with sensitive subjects to write with absolute clarity. The book I finished a few days ago written by a charming very popular author, who is obviously a nice person [which is why I will not be naming the book] singularly failed to match up to those standards.
I did not enjoy the book, which turned out to be more fantasy, parable and allegory, than police procedural, but finished it because of certain comments about a doctor, who worked with Down's syndrome people in a community.
The words "treatment" and "cure" were used [inappropriate because Down's syndrome is not a disease] and we were told by one of the characters that the people were "damaged". We were then informed that because the doctor had ended his research, lived in this community, and written a book about it, that he was a "saint".
All very dramatic but it made that community sound like a leper colony.

The author probably had very good intentions, but they were lost somewhere along the line.
At the end of the book an old wild knackered horse, that was destined for the abattoir, was sent to the community.
In my mind, perhaps wrongly, the patronizing impression given was that while this community was a place of love it was also for the "damaged".

I might be oversensitive, but then a book that within a few pages discusses Albert Speer, Charlotte Bronte, and Bohuslav Martinu, is bound to short circuit my poor old brain.

6 Comments:

Blogger Margot Kinberg said...

Norman - Thanks for bringing this important point up. Having taught for several years a (very) introductory course on teaching students with special needs, your points truly resonated with me.

3:54 AM  
Blogger Bernadette in Australia said...

I couldn't agree with your more Norman that writers of any kind of fiction - books, movies etc - have a duty to get this kind of thing right and if they can't do that then they should leave the topic alone. I know why you think you might be being over-sensitive but I don't imagine you are being so - I don't have as direct an experience as you but I have plenty of second hand experience through volunteer work that I do and am equally p***ed off when I see a patronising attitude and/or a complete failure of understanding displayed towards people with Down's syndrome or people with physical disabilities or people with mental illness or any similar groups that are already marginalised enough by society and frankly have enough crap to deal with. It's bad enough to see it in a real life/off the cuff situation but to see it published - in a movie or book - that has gone through countless hands and eyes is utterly galling.

4:36 AM  
Blogger Uriah Robinson said...

Thanks Margot, teaching students with special needs is another complex subject. Years ago I arranged a series of talks for the parents of young children with Down's syndrome. The idea was that we had a special schools head teacher and a main stream primary school head teacher, and they would give us information on what the system was in their schools.

The main stream teacher made great play on how his school had accepted a child with learning difficulties. But then told us the child did not actually move up the school with other children but was kept in the class above the reception class, with children much younger. This was many years ago, but we chose the special school where our son excelled because after all no one likes to be permanently bottom of the class.

5:37 AM  
Blogger Uriah Robinson said...

Thanks Bernadette it is good to have your support. You are right the topic should have been left alone.
The way the capabilities of people with Down's syndrome are underestimated is annoying. My son took a Prince's Trust Award along with "normal" young people some of whom sadly had not much more literacy than him.
He did everything asked on the twelve week course except that when he got to the edge of a 120 foot high viaduct that he was meant to abseil down he said "I am not going down there!"
I think that had more to do with genetic material inherited from his father than Down's syndrome.

5:46 AM  
Blogger Dorte H said...

How embarrassing for a writer to know so little about a fairly common syndrome. I have sometimes experienced something similar when writers write about Autism or Asperger´s Syndrome, but that may be more understandable as the latter is a fairly modern diagnosis.

9:39 AM  
Blogger Bernadette in Australia said...

LOL Norman, personally I think choosing not to jump off perfectly good viaducts shows great intelligence - if we humans were meant to be doing that sort of thing we'd have wings. Or Spiderman-like wrists that shoot webs.

2:03 AM  

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