Tuesday, October 14, 2008


Half of the automating work on my bedroom door has now been done - thanks to intervention from: The Girl, the disability support team at the Equality Service, the Equal Opps Officer for the School of Sociology and Social Policy, the Director of Estates, and the head of the Disability Studies course (who also happens to be my personal tutor). Apparently the motto is something like 'when all else fails, get in with the top people'.

So I am now able to kick my door open without injury, and on Friday I'm promised it will be fully automated. We shall see, of course, but right now I'm just happy to have injury-free entrance and exit to my own home.

As I said thanks to the Accommodation Services woman for (*finally*) arranging this, I heard myself apologise for being 'difficult'. Oh God. Someone please have me shot - I'm a really, really terrible example of a disability rights activist. (But seriously, how do you thank someone for arranging something about which you've been really quite forceful, while acknowledging both their hard work and your inconvenience, without either backing off from your original strong position or sounding ungrateful? Best answer wins the last gingerbread person from a lovely little homemade batch that my PA brought me the other day.)


Anonymous said...

Having worked in a university and been on the other end of a problem that has not been dealt with properly (or referred or escalated appropriately) by the first person who was asked to help ... and being the kind of person who then takes responsibility for the problem and solves it or refers it and follows up ... it's kind of embarrassing for us too.

You want to be happy that you've helped and sorted it out but at the same time you feel incredibly embarrassed and apologetic that the problem wasn't sorted quicker/first time/etc.

I used to be left feeling rewarded that I'd made a difference (person sounds relieved and/or says thank you) yet at the same time incredibly defeated and depressed that my organisation falls down and I was just a link in a beauracratic chain and that effecting change int he faulty bits was near impossible as a mere working pleb. And knowing that I couldn't be the one to always take responsibility or I would expire.

So the short version is say thank you and thump the counter at the same time because the lovely person probably feels the same mix of emotions.

Apologies for the incredibly long first sentence!

Elizabeth McClung said...

I'm just glad that something got done, is getting done and you can go to your bathroom. I find social conditioning almost impossible to ignore, like trying to be a good "hostess" to the people who have called you up, told you they are meeting at your apartment to determine how much care they are going to remove from you. I hate them and then I offer them a drink. ARG!

Unknown said...

Would you consider mentioning my newly-published memoir on your blog? I would be happy to exchange blog feeds as well.

Seven Wheelchairs: A Life beyond Polio was recently released by The University of Iowa Press.

The memoir is a history -- an American tale -- of my fifty year wheelchair journey after being struck by both bulbar and lumbar poliomyelitis after a vaccine accident in 1959. The Press says Seven Wheelchairs gives "readers the unromantic truth about life in a wheelchair, he escapes stereotypes about people with disabilities and moves toward a place where every individual is irreplaceable."

Other reviewers have called Seven Wheelchairs "sardonic and blunt," "a compelling account," and "powerful and poetic."

I hope you can mention Seven Wheelchairs on your blog. We all live different disability stories, I know, but perhaps if you find the memoir worthwhile, you might want to recommend the book to others who are curious about what polio or disability in general.

Of course, the book is also available through Amazon and Barnes & Noble.

Gary Presley www.garypresley.com
SEVEN WHEELCHAIRS: A Life beyond Polio
Fall 2008 University of Iowa Press

Dr.Rutledge said...

Hi lilwatchergirl,
I'm an academic physician (formerly at Harvard and Stanford) who found your blog while looking for the best health writers. I think your writing is great! I would like to feature you in the Chronic Fatigue Syndrome Community on Wellsphere, a top 10 health website that has well over 2 million visitors monthly.

If you would like to learn more, just drop me an email to Dr.Rutledge@wellsphere.com

Naomi J. said...

Dr Rutledge: While I'd be delighted, I have EDS and Fibromyalgia, not CFS. But if you have communities in either of those conditions, I'd be please to have a look at your website and see if I'd fit in there.