A point to address with the Library Congress
The other day I saw a programme on television called ‘Bible Hunters’. Don’t worry, I’m not about to get all religious but it looked like a fascinating series and indeed it is. On the programme they mentioned a bible that was discovered and bought by donations from the British public and is kept in the British Library (BL).
When I finished watching, I looked up the BL website. I’ve never visited the BL (old or new building) despite having worked and lived in London all my life. It got me thinking I should maybe take the time to visit. It would only cost me my fares after all, given it is free entry.
It also occurred to me that I ought to check my own book was held there. By law, a copy of every UK print publication must be given to the BL by its publishers. Using the online main catalogue search facility I put in my name.
Sure enough, my book is listed and I was thrilled to see it there. That was, until I noticed the words ‘Huntington’s chorea’ for the subject matter.
Why would that upset me?
My problem is with the word chorea being used instead of disease. I even have a poem ‘The Name Game’ in my book to illustrate why I and others are concerned that the disease is still referred to as chorea. See below:
The Name Game
For some time now, the disease named by George Huntington has been known as ‘Huntington’s disease’ or ‘HD’. It was originally known as ‘Huntington’s Chorea’ or ‘HC’ due to the noticeable involuntary movements of the people affected. The term chorea derives from the Greek word for dance ‘choreia’.
As more information became known about Huntington’s, and it became clear the motor/movement characteristics were just a part of the illness; and also that not all patients actually overtly displayed involuntary body movement, the term chorea was replaced by ‘disease’. Many people, including me, are unhappy with HD still being referred to by its old name. This is particularly worrying where members of the medical profession are involved.
Many of us feel compelled to point out to professionals at every opportunity the ‘disease’ element being important in particular where cognitive; emotional; and reasoned thinking is compromised more than physical movement. To label such a complex disease as simply ‘chorea’ suggests an ignorance of its true nature.
Sadly when my husband died, ‘huntingtons [sic] chorea’ was stated on his death certificate.
I don’t have “HC”, I have “HD”,
I snap at the doctor in front of me.
If he mentions “chorea” just once more,
I’m in danger of kicking him out of the door!
“Chorea” may be what you heard at med school,
But by using it now you just sound like a fool.
It’s been several years now, since it’s been called “disease”,
So go back to your books and research this thing please.
Yes there may be link to “chorea” or “dance”,
Where in olden days doctors just gave us one glance,
But in case you’ve not noticed it alters my mind,
And the movement’s the least of my worries you’ll find.
Please show me respect, and use the right name;
The “disease” terms’ important, it’s not a word game;
It’s used to ensure it reflects what is true,
That this thing is so complex one symptom won’t do!
Using the contact form on the website, I wrote the next day (Friday February 14th) to request the catalogue reference be changed.
As the author of Curse in Verse and Much More Worse I was disappointed to see that my book comes under the category of books on ‘Huntington’s chorea’ (HC) as opposed to ‘Huntington’s disease’.
It may seem a minor issue where HC was the old name for the disease but part of my publishing the book was to help educate the public. I even have a poem on page 43 ‘The Name Game’ where I highlight how the condition was re-named in order to get away from people thinking it was simply a movement (chorea) disorder.
I would be very grateful if you could ensure it comes under Huntington’s disease rather than Huntington’s chorea.
Happy to discuss if someone would care to provide more contact details.
I was pleasantly surprised to get a response from the Authority Control Team very quickly (morning of Monday 17th February). The promptness was welcomed although it appears the BL don’t have control over the categories for their books! That area appears to be regulated in America under the Library of Congress Subject Headings.
Dear Trish Dainton
Thank you for your message.
Along with many other libraries throughout the world, the British Library uses the controlled vocabulary of the Library of Congress Subject Headings (LCSH). Only the Library of Congress can actually add or change such headings, although we can and do propose new headings and changes to existing headings – inevitably, over time, some headings become outdated.
I’ve now contacted the Library of Congress and requested that the preferred term be changed to “Huntington’s disease” rather than the existing “Huntington’s chorea”. I anticipate that they will probably accept the change – though it may take up to a month or two for the change to be effected. I’ll try and monitor progress.
It’s encouraging that the BL anticipate there should be no problem with the change request. We shall have to wait and see where it still comes under the chorea heading at the time of typing this blog entry.
For anyone wondering if I did get off my fat lazy butt and visit the BL…
Wednesday morning I got a call from my temping agency. Would I please do 2 hours handover that afternoon and a 9-5 cover the following day for a company near King’s Cross Station? I said no problem and got over to the Agency in Holborn to get my assignment details.
The assignment sent me to Euston Road. I was actually placed at offices above the O’Neills pub. The pub is on the opposite corner to, you guessed it, the BL! I popped over to the BL during my lunch hour. In effect, I reckon Steve managed to not only make sure I got off my fat lazy butt to check out the Library, but he paid my fares and my lunch too where I was on a working day. Spooky or what?