What happened to Hero Joy Nightingale?

March 23, 2006 2:22 PM

"I have no desire to be a dependent thwarted bitter crip living out decades of boring meagre existence. I have my path mapped out clearly. Artist."

The Thwarting of Dreams, by Hero Joy Nightingale
posted by iffley (15 comments total)

Hero indeed.
posted by jokeefe at 2:29 PM on March 23, 2006

What am I missing here? Is the post title a rhetorical question, or in my skimming of the articles (I'm at work) have I missed the ending of her story?
posted by jokeefe at 2:35 PM on March 23, 2006

Her trail on the web seems to end around 2003.
posted by iffley at 2:50 PM on March 23, 2006

did she ever make it oxford?
posted by jann at 4:56 PM on March 23, 2006

Thank you so much, iffley. The Thwarting of Dreams contains profoundly brilliant writing, some of the best I've read in some time. I'm looking forward to reading through all the issues of From the Window. I do hope someone knows what she's doing now. I'd like very much to read more of her, and to see her art.
posted by melissa may at 5:10 PM on March 23, 2006

Wow, I haven't heard that name in a while. I met her when I visited the Isle of Mull back in around 1997... she had the most amazing eyes. I have no idea what she is doing now though.
posted by wildilocks at 8:47 PM on March 23, 2006

Yes, thanks for this. Her writing is excellent and insightful. Such keen observations. She is clearly gifted, and the isolation imposed by her condition puts a sharp point on her abilities. This is the first I've heard of her, and I too am wondering what she's doing now.
posted by apis mellifera at 8:57 PM on March 23, 2006

very cool--thanks : >
posted by amberglow at 9:01 PM on March 23, 2006

yeah, is she ok now? nothing is current. what about college?
posted by amberglow at 9:05 PM on March 23, 2006

This is a great story. Actually, there are quite a few people with disabilities who are writing great blogs. The BBC has a listing of them here.

Of course, I'd be remiss if I didn't mention my own disability-themed blog, The 19th Floor.
posted by wintermute2_0 at 10:26 AM on March 24, 2006

cool, wintermute--how is SMA diff from MD? and now that there's a test for it, are parents choosing to abort, or no? (and don't you think the parents should decide in that case about the baby?)
posted by amberglow at 1:23 PM on March 24, 2006

is yours as severe as that baby's?
posted by amberglow at 1:25 PM on March 24, 2006

and that Brainstorming the Future thing is a wonderful idea! did you see my post about the company in the UK doing evaluations of site accessibility with disabled ppl as the testers?
posted by amberglow at 1:28 PM on March 24, 2006

My specific case of SMA isn't as severe as the child you mention. I can speak and I have some very limited movement in my hands and feet. SMA manifests differently in each individual.

I do think the hospital overstepped its bounds in that particular case. It sounded like there was already poor communication between the parents and hospital staff, which might have aggravated the situation.
posted by wintermute2_0 at 6:29 PM on March 24, 2006

ahhh.

i don't know--i think if you're a baby/toddler, your parents should be the ones to decide about care--of course, we don't get to choose our parents and sometimes they don't know best at all...it's hard--and with limited healthcare resources (except for the rich), everyone (here at least) is at the mercy of HMOs, if they even have insurance.
posted by amberglow at 9:16 PM on March 24, 2006