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[P]
A view on the web "from the window"

By Demona in Culture
Sat Jun 10, 2000 at 03:44:25 PM EST
Tags: Culture (all tags)
Culture

While negative headlines regarding the Internet and World Wide Web far outweigh the positive, the existence of the latter cannot be denied by even the most hardened critics. The common theme in most of these is not the technology itself, but its use as a tool of communication; to help voices in being heard, and to help people communicate and cooperate. One of those voices is Hero Joy Nightingale, and while her story is compelling and her talents apparent, her most lasting legacy may be through the community she is bringing together.


Watching the Web grow up around me and myself along with it, I've read more than my share of net stories, from long-lost relatives reunited to suicides averted and love blossomed. But every once in a while, a story comes along that's so unique and unflinchingly honest it demands to be heard. For Hero Joy Nightingale, the Web has given her a voice: Her online magazine, From the Window, which went online in 1997. I recently revisited, prompted by the thread on one-handed programming.

From the Window is

...a worldwide magazine inviting contributions in the fields of journalism, poetry, travelogues and experiential writing from people in all walks of life and all parts of the globe.

We are a non-commercial internet magazine (now with a readership in 105 countries) following a quiet path away from the soundbites and manic zing of mainstream net, promoting understanding of the breadth of common human experience, celebrating a joy in language and run by a pretentious and pompous crip child...

A single malfunction of the senses, such as being blind or deaf, may seem obstacle enough. But imagine being a programmer -- or a musician, and the two have oft been linked -- like Stephen Hawking, whose body may literally be something they are locked inside of. Hero makes no bones about her condition, but she refuses to let it rule her existence, showing intelligence, maturity and even humor in the face of adversity:

I am a thirteen year old [currently 14] girl with a locked-in syndrome caused by a profound apraxia of all my muscles and the retention of dominant babyish reflexes. I am a wheelchair user and need complete care. I cannot make voluntary sounds and therefore cannot speak. Spelling is my greatest delight as it affords me the freedom to direct the course of my life. I crave acceptance as a really quite ordinary person, with an artistic temperament and a nice enough personality. On the whole I prefer adult company to kids', and my own company to 'most any other. I am bloody-mindedly independent and rarely acknowledge the wisdom of my mother's grey years.
Her magazine has garnered serious accolades, as have her musical works, and she's managed to travel abroad despite physical and financial limitations. Her contributors are composed nearly equally of the famous and non-famous, sharing all manner of experiences and emotions. Her openness is raw and unflinching even in this day and age of tell-all TV and bare-naked online diaries, and as an adolescent her wit has both an adult's dry edge and a child's droll eye:
The name is Hero. The original one was a Greek mortal whose lover boy Leander swam towards the light in her window each night until one day she forgot said light and he drowned. I am far too young to find this anything but daft.
Yet despite her success, she's not resting on her laurels:
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. I want to live a life full of doing - writing music, making sculpture, building ballet and film into entertaining enlightenment. I want to be so busy, I feel there is so much to be doing.
And she wants to reach more people, and to hear from a wider variety:
I have tried contacting schools in a dozen or more countries to enlist young journalists in my project, as I am particularly interested in collecting oral histories from people who have witnessed cultural changes that can otherwise seem remote from us eg experience of war or grinding poverty. I have been disappointed with the lack of enthusiastic response from children although staff within the schools have invariably been supportive and encouraging...

I am as ever desirous of this magazine becoming less lamentably ethnocentric and reflecting a broader range of lifestyles, backgrounds and experiences. Therefore I am currently seeking contributions for the next edition from sources across the globe and very much hope that surfers reading this now as a result of my letter-writing or as a result of fortuitous roaming will wish to add their own voices to "FROM THE WINDOW".

So what to do? Post this story -- for the sake of the crip girl, you know she'd want you to! Read her stories and those of her contributors -- and then contribute your own in some way. Print her magazine out -- she encourages it -- and pass it around to anyone you think might be interested. Be a node in the human network: Help make the world smaller -- by bringing us all just a little bit closer together.

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Related Links
o Hero Joy Nightingale
o community she is bringing together
o From the Window
o Stephen Hawking
o condition
o refuses to let it rule her existence
o garnered serious accolades
o musical works
o travel abroad
o Also by Demona


Display: Sort:
A view on the web "from the window" | 25 comments (25 topical, editorial, 0 hidden)
Reads a bit like an ad, but it soun... (1.00 / 1) (#3)
by raph on Sat Jun 10, 2000 at 02:58:02 AM EST

raph voted 1 on this story.

Reads a bit like an ad, but it sounds good.

Well, the part about the online com... (none / 0) (#10)
by dhartung on Sat Jun 10, 2000 at 03:35:45 AM EST

dhartung voted -1 on this story.

Well, the part about the online community was sort of on-topic, but the rest was just as easily a transcript of a Very Special Dateline NBC story. Yes, there are wonderful people out there doing wonderful things. I don't think they need to be discussed everywhere.
-- Before the Harper's Index: the Harper's Hash Table

Well written point of view, however... (none / 0) (#8)
by Coram on Sat Jun 10, 2000 at 05:10:57 AM EST

Coram voted -1 on this story.

Well written point of view, however i inherently have a problem with any commentary sounding out the sorrows of the individual within the greater community. I don't believe that an individual's perspective becomes any more important when they are physically/socially/mentally limited in some fashion, or their works more compelling than those of sufference of any other kind. After visiting HJN's web site I feel no inclination to change my view.

--
judo ergo sum

Self pitying and aggrandizement (none / 0) (#13)
by Demona on Sat Jun 10, 2000 at 04:41:30 PM EST

I thought the same at first, but one visit was enough to convince me otherwise. Hero has touched on this as well:
...I find it sad that although I may be sufficiently cute crip to be a human interest story in the press, I can't kick them into campaign mode single-handed. I don't really want to spend my life in politics fighting for my rights or those of others. There are other things I want to do, but if I am prevented from doing them, I have no choice but to be a political animal.
She doesn't hide her fears, but she doesn't wallow in self-pity or revel in her "different-ness". And the magazine's focus isn't primarily her, but the material contributed by others.

(I really like her writing; it has that dry British feel, but also its own individual flavor.)



[ Parent ]

I am going to be devils advocate he... (none / 0) (#7)
by Commienst on Sat Jun 10, 2000 at 05:13:59 AM EST

Commienst voted 1 on this story.

I am going to be devils advocate here because not enough people have scrotum enough to do so... this is why we need eugenics. No one deserves to be born handicapped, with druggies for parents, clinically depressed, etc (dont give me that god wants to give people challenges bullshit). No one ever asked to be born so I do not feel it is wrong to take away peoples rights to have kids. Who's right is it anyway the parents or the potential newborn? After all, all the parents do is have sex the baby actually has to live in this world we failed to make a decent place. In fact having children is a selfish act. Most people have kids because they want to feel loved or they are conditioned to do so just as many people are conditioned to get married and like mormons are conditioned to accept polygamy.

Re: I am going to be devils advocate he... (3.00 / 2) (#12)
by fluffy grue on Sat Jun 10, 2000 at 04:03:50 PM EST

Personally, I think a world full of 'perfect' people, of 'normal' people would be, well, damned boring. I wouldn't mind seeing those who are obviously unfit to breed having their ability to breed removed, but if everyone has blonde hair and blue eyes and white skin, there's no variety, no spice. If everyone's cut-and-dry male or female, then there will have been a complete failure to acknowledge the fact that H.Sapiens is beyond gender. If nobody ever has bizarre "defects" such as Wolfman Syndrome, then nobody ever changes, the species never grows beyond its currently-prescribed mold, nobody ever could have (or at least carry out) aspirations of individuality.

Everyone is always told to be an individual, but then shown by example not to be different at all. I can't stand when hermaphrodites are turned 'normal' by unrelenting, uncompassionate doctors who convince their parents that if they're not cut-and-dry normal then they'll have a shitty time in life.

Yeah, I'm focusing on gender here. I tend to. It's one of the few things where people actually CAN be any individual in, and yet are alwyas oppressed for not being 'normal.'

There should BE no normal. Normal is boring, it is stale, it is NOTHING. People are afraid of that which is not normal, but nothing is exactly normal. Everyone has some sort of congenital 'defect'; that is normal, not someone without any.

Sorry to rant.
--
"Is not a quine" is not a quine.
I have a master's degree in science!

[ Hug Your Trikuare ]
[ Parent ]

Re: I am going to be devils advocate he... (none / 0) (#16)
by Nio Spartan on Sat Jun 10, 2000 at 10:09:00 PM EST

If dog-breeding, mad cow disease and the current evoloutionary state of the Cheetah are any indication, eugenics serves as catalyst for inbreeding, not as a deterrent. I eat meat, wear leather, and yet I still can acknowledge that.


What does courage mean? You can't program it. -Hugo Pratt
[ Parent ]
Re: I am going to be devils advocate he... (none / 0) (#17)
by Commienst on Sun Jun 11, 2000 at 12:13:29 AM EST

Just because certain people are no allowed to have children because they are unfit parents or would pass a disease, handicap or major illness (eugenics basically) does not mean everyone will start having sex with their relatives, and I have no idea how you draw that corrolation.

[ Parent ]
Re: I am going to be devils advocate he... (2.50 / 2) (#23)
by Nio Spartan on Sun Jun 11, 2000 at 06:02:00 AM EST

Inbreeding isn't restricted to the old stereotype of intercourse between family members; genome studies have revealed there are numerous sets of genetic patterns which can cross themselves over generations with varying degrees of detriment, ie. allergies, bone disorders and circulatory problems appearing in family histories, etc.

While in a number of cases, such ailments are naturally occurring, as with birth defects, or the byproducts of environment (ground toxins, smog, radiation), the redundancy of inherited traits over the course of generations does play a signifigant role as well.

And eugenics most certainly reinforces this particular type of genetic inbreeding; by isolating "abberant" trait carriers through stigmata and sterilization, the "survival of the fittest" mechanism Darwin observed is accellerated exponentially. Antibodies and other signatures are restricted to the genetic sets only available within the idealized "majority", which can easily become redundant instructions throughout the successive generations. Studies of birth defects in closed communities have shown this can happen in as little as three or four generations, and still without anyone directly marrying their cousin.

Not only does excluding anyone out of the life cycle exculdes genetic material which can benefit the later development of the species, but it also incites a culture to attack itself. If someone loses a limb or organ by accident, their contributions to society may allow them to continue breeding. But if (again, toxins, radiation) their detriment was due to locale, they instantly become a "liability" to the eugenic line.
What does courage mean? You can't program it. -Hugo Pratt
[ Parent ]
I'm going to... not be the devil's advocate. (none / 0) (#14)
by goosedaemon on Sat Jun 10, 2000 at 08:40:26 PM EST

There's a Jewish proverb that comes to mind here.
"He who has not suffered, what does he know?"

As for the latter half of your comment,
...try applying that logic elsewhere. Perhaps to yourself, your family, your peers.

[ Parent ]

Re: I'm going to... not be the devil's advocate. (none / 0) (#18)
by Commienst on Sun Jun 11, 2000 at 12:23:54 AM EST

You do not have to suffer to learn.

"As for the latter half of your comment, ...try applying that logic elsewhere. Perhaps to yourself, your family, your peers."

I have told my mother herself that it was selfish of her to have 2 kids and why and she even admitted I was correct. I do not have kids and probably will not. My peers are in high school and the majority of them do not have kids.

[ Parent ]

Re: I'm going to... not be the devil's advocate. (none / 0) (#19)
by fluffy grue on Sun Jun 11, 2000 at 01:01:52 AM EST

Wow, my brother's in high school and he doesn't have kids either! Hey, and my brother's friends are all in high school and none of them have any kids! Wow, I guess everyone is totally into eugenics, then, huh?
--
"Is not a quine" is not a quine.
I have a master's degree in science!

[ Hug Your Trikuare ]
[ Parent ]

Re: I'm going to... not be the devil's advocate. (none / 0) (#20)
by Commienst on Sun Jun 11, 2000 at 01:34:45 AM EST

No he just wanted to apply this:

"In fact having children is a selfish act. Most people have kids because they want to feel loved or they are conditioned to do so just as many people are conditioned to get married and like mormons are conditioned to accept polygamy."

to myself, my peers and my family which I just did in the post you have replied to.

You must be confused or something.

[ Parent ]

Re: I'm going to... not be the devil's advocate. (none / 0) (#25)
by Anonymous Hero on Mon Jun 12, 2000 at 01:43:00 PM EST

I am 21, and I intend to have children with my partner. Or one, anyway. That is because we love each other and we both want to share the joy of so many other humans/animals [depends on your perspective] of bringing children into the world, nurturing them, teaching them, helping them, guiding them, watching them smile....

We're not planning on doing this until we're in our late 20s [got enough money, still young enough to have enough energy to deal with children, etc], but we both love the idea!

Not wanting to have children is not radical. And see if you feel the same way when you're about 25 and watching your friends/acquaintances having babies. High school is a bit young to be having children anyway.

[ Parent ]

Re: I'm going to... not be the devil's advocate. (none / 0) (#24)
by goosedaemon on Sun Jun 11, 2000 at 06:06:51 PM EST

I mean, I was born. I have chronic depression and feel miserable a lot of the time. But I far prefer the prospect of life to death, and I expect the girl in the story does, too, and probably most other people crippled badly in some way, mentally or physically.

And let's not forget the prospect of cures. I can take zoloft, get sunlight, excercise, and I'm not all that bad. Cures may come at any time. As an example, in one of the Star Trek movies (the one with that giant head in the center of the galaxy ), we visit McCoy's past, specifically a scene in which his father is badly ailing. McCoy kills him. After this scene plays out he gets really enraged because he remembers that a few days (DAYS! ) later they found a cure.

What if the doctors had thought for some reason that you should've been aborted?

[ Parent ]

I was going to vote 1, until the co... (none / 0) (#9)
by named on Sat Jun 10, 2000 at 05:22:04 AM EST

named voted 0 on this story.

I was going to vote 1, until the comment "for the sake of the crip girl." Bah, an attempt at unabashed heart-string pulling.

Ah, human interest pieces. Great fi... (none / 0) (#5)
by inspire on Sat Jun 10, 2000 at 06:40:04 AM EST

inspire voted 1 on this story.

Ah, human interest pieces. Great filler material for news networks everywhere ;-).
--
What is the helix?

Wow. ... (none / 0) (#1)
by driph on Sat Jun 10, 2000 at 08:41:28 AM EST

Driph voted 1 on this story.

Wow.
That's one of the many things I love about the net.
Online you are judged mostly by your words. With that in mind, one can be honest, the person they really are, and allow others to see their true thoughts, ideas, and feelings. Unfortunately, it also allows one to mask their true presence, to deceive, to be someone else entirely. Whether or not that is a good thing is up for debate.

There are some amazing young people online, and those who use the net to their advantage find that it is a place where they have as much a chance of being heard as anyone else.

--
Vegas isn't a liberal stronghold. It's the place where the rich and powerful gamble away their company's pension fund and strangle call girls in their hotel rooms. - Psycho Dave

The links don't work for me so they... (none / 0) (#2)
by Pelorat on Sat Jun 10, 2000 at 09:41:01 AM EST

Pelorat voted 1 on this story.

The links don't work for me so they get bookmarked for later, but it sure is nice to hear about a 14 year old who understands the value of articulation and precise spelling. I didn't think there were any left.

A great story. I'm always amazed a... (none / 0) (#6)
by gandalf_grey on Sat Jun 10, 2000 at 12:18:14 PM EST

gandalf_grey voted 1 on this story.

A great story. I'm always amazed at the elequence that can be displayed when barriers such as physical limitations can be overcome. we often forget that the net has opened whole worlds to many people.

It just seems like k5 has way too m... (3.00 / 2) (#4)
by Velian on Sat Jun 10, 2000 at 12:57:45 PM EST

Velian voted 0 on this story.

It just seems like k5 has way too many "Featured Articles."

While I think it's preaching to the... (none / 0) (#11)
by Denor on Sat Jun 10, 2000 at 02:32:26 PM EST

Denor voted 1 on this story.

While I think it's preaching to the choir here, a positive 'net story is always worth seeing.

-Denor


stuff (none / 0) (#15)
by Novalis on Sat Jun 10, 2000 at 09:11:32 PM EST

What I find interesting about this story is the girl's parents. They must be really dedicated, and hard-core, to allow her to achieve what she has achieved. Interestingly, she almost never discusses her father - I wonder why.

Seeing "From The Window" makes me want to write something - but nothing I write is exactly suitable :)

I wish that Hero would put MP3s of her music online - I would like to hear it. Maybe I'll send her a note :)
-Dave Turner
Re: stuff (none / 0) (#22)
by Greyjack on Sun Jun 11, 2000 at 03:51:24 AM EST

Interestingly, she almost never discusses her father - I wonder why.

In light of my skeptical post above, I would suspect it's because her mother is her primary enabler. People generally like to talk about themselves.



--
Here is my philosophy: Everything changes (the word "everything" has just changed as the word "change" has: it now means "no change") --Ron Padgett


[ Parent ]
Very skeptical (4.00 / 1) (#21)
by Greyjack on Sun Jun 11, 2000 at 03:48:33 AM EST

I'm going to have to dig around and do some research here, but.... Now, correct me if I'm wrong, but from what I gleaned on Hojoy's website, she communicates in an assisted manner through a letterboard, no?

If I recall correctly, the research that's been done in these instances shows that the disabled person, whatever the reason they're unable to communicate, generally cannot communicate information that their enabler *does not already know*.

Given that:

a) she's been unable to communicate in any other way, other than through those close to her, particularly her mother, and

b) her apparently startling early development of language and other sophisticated skills, despite the lack of access to the mechanisms through which language is typically developed (namely, speech and movement),

I can't help but think that her enablers, unwittingly, are the ones who are actually writing these pieces.

OTOH, I'm posting this at 4am 'cause I'm tired but yet can't fall asleep, so I might not be the least bit coherent here. But, if there's demand, I should be able dredge up some more authoritative info than just my spotty memory here :)

(among other things, c.f. Ouija boards.)



--
Here is my philosophy: Everything changes (the word "everything" has just changed as the word "change" has: it now means "no change") --Ron Padgett


A view on the web "from the window" | 25 comments (25 topical, 0 editorial, 0 hidden)
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