Did you just tell me to go fuck myself?26 Jun 2012 in open-access, climbing, twitter, Dupuytren's Contracture
So this morning I had a scan with a consultant and he has diagnosed me with Dupuytren’s Contracture. I’ve been a climber since the summer of 1990, nearly 22 years now. It’s been amazing, I’ve gotten into some pretty special situations, and I’ve gotten pretty fit. There is some evidence that there is a higher incedence of Dupuytren’s Contracture amongst climbers. There is a great write up about a climbers experience of this condition on ukclimbing.
Anyway, I’m getting a bit off the point I wanted to make. I’m not very delighted about this. I’ve just wasted four months of staying away from training because I had a mis-diagnosis, one of the three longest layoffs I’ve had from climbing in the last two decades. I now fully expect that within the next ten years I’ll be looking at some level of surgical procedure. I’ve been avoiding writing blog posts in the last few months as I was afraid of tendon damage, basically I’m pretty much not very happy about this.
I’m interested in finding out more about the condition, it seems that there is some process where the type of collagen in my hands will start to change from one type of collagen (the good collagen) to another type of collagen (from this point on to be referred to as the evil collagen). I’m mutating, but sadly I’ll not be shooting any threads of spider silk from my wrists, mores the pity.
I’ve been a big fan of open access publishing, and now I have a very personal use case for wanting access to all of the literature. I tweeted about this earlier today, and I got the reply below from an Elsevier employee.
@IanMulvany Get well soon Ian. Your doctor will surely have access to relevant literature (unless you are planning to self treat).— Andrew Miller (@EndoMetabPub) June 26, 2012
So, there is a great cartoon from @jrecursive that pretty much sums up how I felt when I read that tweet:
There is just so much wrong with this response, I was gong to lob back a pithy response on twitter, but I just didn’t have it in my heart to do so, I was just astonished.
There is so much wrong with the response, it assumes so much, it’s so condescending. I’ve been seeing a specialist, and it costs me about two hundred pounds a visit. I’m not going to be asking my specialist to do a literature search for me, I mean, for fuck’s sake, reading and digesting any tranche of literature is a very personal thing. I want the specialist to diagnose me, to do the scans, to give me medical advice. I don’t expect to have a student-librarian relationship with that person.
The response assumes that I won’t want to find out for myself information about what might be affecting me. I’m scientifically literate, but I’m not in a research institution. It’s my body, it has been for a while, and it will be for a while longer. In so-far as I am deeply connected to my corporeal existence, I feel justified in wanting to know what’s going on with it.