
It has some sort of soft leather for the shoulders which should wear well for the wheelchair, bringing me my gothic punk street cred. Under the wings it has the same carrying space as the Punk 2008 rucksack which can take a laptop with ease and the accessories in the pockets, or can take my medical and fetish supplies (odd how those two go together!) and carry them with cool elan’. Shall we try it on the wheelchair, I think so…

Looks pretty good so after Linda had it set up I put most of my essentials in it and took off today, meeting all with a smile including the local panhandler from in front of the video store. We had a discussion about low income people are green friendly due to using alternative funding sources (trading, taking stuff people throw away, making money off of recycling) and how making a high density, high income core is actually forcing the people who make it green friendly away.
I got to the store and they had already noticed the backpack, as well as several customers in the store who had seen it driving past me.
Here is a great picture of me showing my boobies....I mean the backpack (see Soot-san from the Ghibli Museum around my neck!). I tell you, not like I like to name drop (oh well too late!) but h.naoto GETS noticed. Wait till I take my Hello Kitty H.naoto Gothic bag in. And this is a “good” get noticed, not like, “Tommy, move away from the woman in the wheelchair, it looks like her meds aren’t quite balanced!” Which is what I usually get.I also got today a request on the street today for a postcard, so the postcard project lives on. Here are a couple of the postcards I posted 10 days ago, I waited for the postcards to arrived until I showed them here, so they would be a surprise to the person getting them, but now everyone can enjoy the fronts. I do, “pretty, my precious, so pretty!” (click on the picture to make it full screen)

And here are the more, um, specially requested cards, like Yaoi and Yuri and yes, (avert your EYES!) even hetero pairings.

So if you want a postcard, goth, or loli, or friends having fun, whatever you want let me know. Or you want a “special” post card of “good friends” because you like to see two nice girls together having fun, or two good male friends having fun (or want to figure out what will happen next to the Uke in your mind), then please let me know with an email (mpshiel at hotmail.com). Or like today, if you live in town, just ask me. The postcard project has slowed down due to health but I still did over 25 postcards and mailed them on the weekend! Slowed down isn’t DEAD. So please, ask away, and what you see on the front is NOTHING compared to the backs – trust me. I am a very naughty person (or clean and wholesome, I send out LOTS of cards to kids, children, nieces and nephews), so clean and friendly, or naughty and cheeky....when you want me to be (and I WANT to BE!). So have relative or friend who needs a card, let me know!
Before I finish this post I wanted to ask a favor regarding the BBC. The head of the disability section of the BCC is getting rid of all bloggers and replacing them with a few selected columnists. I have written 25 essays for the BBC. Of these one was used for part of a BBC 4 Radio broadcast, two or maybe three were finalists for writing awards, one is currently being taught as part of disability rights course in a university and one or two are being used as examples of a “voice of the client” in training of care givers in agencies. Plus there were magazine and other reproductions of seme of my other essays. Of my 25 essays, maybe five or six were great, 10-12 were good, and well, the rest we will kindly overlook. The thing is, writing for the BBC brings up my game, but also, I can write the same essay here and it won’t end up in a teaching setting because this is just “some woman’s blog.” While saying, “Here is some material from the BBC….” That’s how it goes. Which is also why I have done it all, on a two week and then a monthly schedule with the BBC complely free. No payment whatsoever. I also did it because I believe that the voice of people with chronic pain, of the newly disabled, of those with chronic illnesses and those with degenerative disabilities are not heard or represented.
The BBC has selected a host of new columnists and perhaps only the three new male columnists have shown up and the new female ones will show up later. But so far, none of the columnists to replace the bloggers has an auto-immune disease, or a degenerative disease (though the one recent post about degeneration and rehab, did get the highest responses of all). There are no chronic pain disease, or chronic illnesses and I am concerned that the voice of many people with disabilities: from EDS to fibro, CFS, neurological pain diseases, MS and even SMA along with so many other people with disabilities are being eliminated (much less the voice of the caregivers). I wrote an essay yesterday, which, depending on when they revoke my access codes, may be my last post, called Toilets, farts, hair and what ‘must be done’.
I would appreciate it, and I can’t repay you except with thanks and comments, if you could click on the link and put a comment as you think it appropriate. Some of the topic we have covered here on this blog, but surely, you must have SOMETHING to say about disabled toilets. I would like the BBC to understand, that while they want to turn Ouch into something covering the politics and public face of the stable, employed disabled individuals, that isn’t what the minutes and often nights of disability are about. I can’t write posts like the other columnists about my sunny vacation, or my wonderful experience with the medical profession. And, from the comments, I don’t find a lot of people talking about that either (depression, frustration, doing what you need to in order to survive, yes, that I hear). I would like, maybe not me, but a group representing both those with disabilities and the caregivers who stayed with them. I think the diversity of those people who comment on here would be a great addition to the BBC site and the REALITY of the diversity of disabilities. Even in MS, or Lupus, we have one disease but hundreds if not thousands of individual variations of presentation. I am NOT ashamed that my disease presented in an atypical way (it isn't my fault and I'm not going to play that it is; I'm atypical, get over it!).
Yes, I have anger that a main disability site (BBC’s OUCH) wants to create an image that “This is the simple and joyous world of disability!” Hey, sometimes it is fun, sometimes it is funny, sometimes you somehow end up with a cool backpack for your wheelchair, but no, every day for many people there is a day which is NOT good, and every day, many, many people are fighting the system and paperwork somewhere (including me today - apparently it takes paperwork and processing to get "a callback within 48 days from a supervisor," she corrected herself, "I mean 48 business hours starting tomorrow."
I said, "After dealing with government, neither would surprise me"
Sorry, I feel very passionately because to me, this is like Mr. Anon coming on and trying to silence me. That a place I contributed to is trying to silence and put a mask over a whole aspect of disability (and a largely female aspect at that!). One thing I will not do is live a lie. So, if you want to speak, please do so for me (or yourself), at the BBC post link.
Thanks (and don’t forget to email me about getting yourself or a friend a postcard).



24 comments:
I left a comment on your BBC article. It's a great article, but my mind is too muddled tonight to make a lot of sense with a comment. I'm sorry, your article deserves more, but my mind isn't capable tonight. I don't have "brain fog" but "brain mud". I shouldn't complain, at least it doesn't go into seizure mode and then fry it's own wires like yours.
I love, love, LOVE the rucksack. It would certainly stop me in my tracks and get a loud "COOL" from me. It looks bigger than I thought it would be, which is even better. I'm so glad you got it. We all need even little things to pick us up sometimes. I bought myself a sterling silver/mother of pearl dragonfly necklace last week and every time I wear it, I feel a little better.
The pack is YOU, dear Niece! It looks great on your chair. And you're lookin' pretty good too, if I may say so.
The card are cool too, and I'm waiting for the BBC site to load (I've got a long NASA video loading at the same time...).
While I wait, consider this: Barbie is now buing Hello Kitty accessories. It's tru; see http://www.fashionfunky.com/2008/05/hello_kitty_weds_barbie.php and PLEASE don't flame me! I didn't seek this out, I swear!
Love and hugs,
Neil, walking towards a lamp post.
Hurray hurray hurray!!!!
You got the backpack! I am so happy for you and I think it looks great. It is definitely better than the original choice, in my opinion. Love it!
My son loved, loved, loved his postcard. I will show him that picture of you with the backpack. He was already delighted to discover that an adult gets Japanese art. When he sees that your hair matches that of the sword-wielding postcard girl, he will probably want you to adopt him. So if a freckle-faced Autistic kid shows up on your doorstep, give me a shout and I will come get him. ;)
I will definitely get onto Ouch and comment. Not tonight. It is late and I want to be (somewhat) lucid. But I will do it.
Bad BBC!
-One Sick Mother
I finally managed to put a comment on Ouch! for you. Farts, baldness, disabilities: they're part of all our existence at times. And I get boils. Right now, there's one in my eyebrow that's almost ready to drain. Now THERE'S something most of you don't want to hear about.
More hugs,
Neil
The backpack is so sweet! It is perfect for you - show Victoria how cool EFM is as she wheels around the city. It will look especially awesome when you wear the spider web corset.
You get the coolest postcards... All the time you spend searching for anime postcards sure does pay off.
I love the backpack. It is perfect for you.
I also left a comment on your article. The BBC needs writers like you.
Tammy: Thanks for leaving a comment. I know the feeling which is why I tried to write early, gets me focused a bit more and less muddles. But I am back to sleeping 13 hours a day which helps (except the days are REALLY short now).
Thank, I love the rucksack too. I am glad it is bigger, h.naoto makes this little ones that look great but are useless, while this one is large and useful.
The dragonfly necklace sounds great, do you have a picture of it posted?
Neil: Thanks uncle Neil, haha. It is me and it is MINE! All MINE! Yes, go with the boob....er, I mean color matched shots, Linda wants me to wear my red matching arm warmers to match the bag - which would be even better in a pic.
Oh, downloading those NASA videos, I remember those days (not! ????? What are you watching?) I was happy with the cards, your is coming too, but I've decided to not post pictures until people get stuff. So there is a postcard picture delay happening.
How did you find this if you didn't seek it out (nasa has a lot of Barbie links?)
Onesick: Well the original one was cheaper but this has more personality and style (and like me is a bit more high maintainance!).
I am very glad you son liked his postcard, did you get one too, I need to check the records, but I am glad he liked his, another should come in a couple weeks, all going well. Yeah, that's why I like that girl so much! I actually do have several competition swords for him to play with (um, might not want to tell him that - but the practice precision lane is still set up....you know for my spontanous recovery - denial much?).
No problem, since I have lots of anime cards, about um VERY MANY manga and I think 60 or so anime series for him to watch - I think we can keep ourselves amused.
Neil: thank you so much for commenting, yes, my father got boils on the inside and edges of his eye, so I know they are both painful and ick! But also the reality of life.
Cheryl: Ahh, with the spiderweb corset and my red armwarmers, now all we need is the right skirt and we are groving - I was thinking of wearing that lip service goth "corpse wedding dress" for halloween and trick or treating with kids! Know anyone who can take it in? It is rather oversized now in the body department - there is always the black widow one with black lace gloves but I WANT candy!
Oh no, you opened the Hell box, there was something in there you weren't supposed to see, something I got within 40 minutes of it being posted and YOU weren't supposed to see. Yeah, I work hard at getting postcards. But sometimes people just send me the coolest ones to use (edward gorey, nature, Dana Scully, Childrens story book images, all good stuff!)
Thank you for making the point about some things like unwanted side effects, and issues like where hair is and is not (being female, I'm finding it annoying that it's increasing on my face), and expectations of disability.
I keep noticing that images of disability, sure they are becoming more mainstream than 30 years ago but they show 'trendy' acceptable disability stuff. Not the farts. Not the byproducts. No, not the hair. Not the fluctuating conditions because they are hard to describe and depict.
On a college prospectus there might be a picture of an acceptably good looking student in a trendy looking wheelchair with a notice about how the college meets their needs with access and also a nicely set up picture of the college ramp (with the broken-for-last-8-months bit carefully out of shot). And that's kinda good, it does get people thinking about disability like it belongs in society. Which it does. But then they assume that's all there is to it. And sure, they don't need to know everything, we all have our personal private information... but it's not necessarily the same set of personal private information that everyone else has, any more. Is it, disabled girls and boys...
Backpack is amazing and not surprised people admiring it!
That rucksack is perfect on your chair. It's truly you, and I'm happy you have it, the only one in the Western Hemisphere!
Wow, you are really cranking out the postcards! I would be impressed if all you were doing was getting names and addresses on them, and getting them posted. But you make each one special. Speaking of postcards, I have been sharing my latest receipt with everyone. People say, oh, that's nice. And then they hold it up and go "oooooh!" when they see it backlit.
Yeah, what the hell with Ouch? I think that you have some insight there on the gender issue. It's like they have decided that "male" disabilities--ones that are clearly defined and don't change, wax or wane--are Real Disabilities, and that "female" disabilities which are marked by change and the unknown are not worth their time. Are there going to be new female columnists? It looks to me like women have been demoted to maybe 20% representation. And will those new women be like the men, or will they represent a gendered division of disability? I don't know which will irritate me more, if they segregate disability experience based on gender or if they simply excise the non-predictable disabilities from representation altogether.
I'm sad to hear that Ouch has gotten, well... OUCH. What the hell? Now they're deciding what disabilities are acceptable, i.e. male and presumably on the 'tidy' end of the scale??? Sorry, that's not the best description, but I've also not been feeling up to par...
However, I AM stoked you got a WAY COOL bag! It looks magnificent on your chair! Sweet! I shall await the photos with you in the corset Cheryl mentioned! :)
Medical and fetish supplies, eh? Do you have your own speculum, per chance? I think it might be rather interesting to have your own... sorry, I digress (often).
neil: Well, again, fact of life. I'm a woman who also suffers from a totally benign skin condition which makes it build up quickly but has difficulty shedding. It's not noticeable like psoriasis, but it does help to create wicked ingrown hairs all over my legs - even when I don't shave or wax. And they leave red marks that can take months to fade, and some never seem to. It makes wearing shorts in summer kinda embarrassing since it looks like I've been eaten alive by mosquitoes. As a former esthetician (seems like a lifetime ago) I've tried all the tricks and no exfoliation has helped. Sigh.
Re: callback. I sure had a laugh when I read 48 days. Since the government often takes 6-8 or 10-12 weeks to do anything, this seems like a breeze! (snort)
On the bright side I can no longer remember what was in the box from Magical Hell. Pain certainly can wipe the memory can't it.
Woo! Backpack!! You look...erm, is rad the right term? I don't know these days. Very, very snazzy!! You look so happy and I'm so glad you got it. Some days are good.
Will get on the BBC thing later today.
I now worship your backpack as my personal god, it's just that damn cool.
It does seem a shame that the BBC isn't going to try to keep a balance of the different aspects faced by disabled people. The issues faced by a blind person will be different than that faced by someone with MS. (Obviously there are a million other examples, those were just the first 2 well known ones to pop in to my head.) The one thing I liked about the blog is that there were a ton of different issues being discussed & that many posts were issues of being disabled rather than posts about posts that if you took out 2-3 lines you'd never know they were about disability. I just think there needs to be a broad range of people with a broad range of issues.
That rucksack is much nicer than it was on the website, which is quite impressive. It sits on the back of your wheelchair as though it is happy there. It probably anticipates much wind beneath its wings. I bet it looks great when you are moving. Yay!
Left a comment over at Ouch!
Your rucksack is beautiful. See, EFM can bend an entire Japanese culture to her will twice merely through kindness and earnest appreciation for the beauty of sword maidens and H. Naoto! Oh, and being six feet tall and female and red-headed and a wheelchair user doesn't hurt.
I am glad it's getting noticed. I would gasp in appreciation if I saw one in person too, and then mope about how that style just doesn't work on me.
OK I commented on ouch!. I used your proper title. Those effers at the BBC need to remember your accomplishments.
We did not receive any more postcards, but that's OK. No pressure. I know you are mightily snowed under with Other Stuff at the moment. No worries. :)
OSM
One sick: we found another family member's card was left to dry and temporarily not found and it was posted as well, so it might arrive any day now - as it was posted a few days behind the others - all three of you were posted, the two of you and then the other family member - the delivery is up to the postal people.
I most certainly will post.
That backpack is amazing on your chair! I'm having the worst time finding a suitable backpack nowadays that will hang correctly on my chair, withstand carrying half a ton of books and/or files, and look unique enough that no one will confuse it for their bag on the airplane. Do you have any site suggestions?
Dawn: will ask Linda where we looked
Thea: I am tired of that guy or gal getting every gig; are they professional, "This is a great integrated place" models becuase they had one in the pic for being an intern at the Y, which isn't accessible, doesn't have toilets or an elevator (you have to wheel around the block). Yeah, sick of that false image.
One sick: thanks - but they are coming, the cards!
Queen Slug: Yeah, I think it is pretty darn cool too!
I am disappointed at the BBC and I am hoping to pitch to the big wigs that having a female with an alterative perspective "chronic pain, degenerative, multiple systems" can bring in another viewpoint and get on as an occasional writer for them.
Yanub: I have no disagreement, the problem is that the message board and who is promoted on the front of Ouch seem more and more at odds. Let's face it, where are you going to get a lot of good looking long term chronicly disabled people - and is this about a certain type of image?
Abi: have no fear, it WILL fly, even if that means flying with my chair to land atop of me after another spill!
Lisa: Well, I have an ambi-bag but no speculum for reasons unknown, lots of PVC (cleans up well!).
I gave up writing for the BBC Ouch site (some time ago) because some of their policies - both written and unwritten - disturb me. I'm definitely worried to hear about this new development with getting rid of the bloggers, who are the ordinary human face of the Ouch site. I think you're right, that the voices of those who have a 'wider' view on disability are being considered less interesting, or maybe less relevant, by the BBC. None of that is true.
I absolutely think you should pitch a regular column to the BBC. You *have* to be their most famous blogger, and I can't believe they'd just abandon you and your writing.
Also, start a thread on Ouch Talk about this (if you're allowed to - I know the site has funny rules on what can be discussed in public and what can't). People who really enjoy your blog might see the post, and protest.
Hi there,
I stumbled across your blog by complete accident by Googleing h.naoto and what an interesting post it was! I am also a h.naoto bag owner, and I agree, his bags do get you noticed. Sometimes I feel I should be a bit more grown up than being a weekend wannabe punk, but I cave to my inner goth.
I don't have a disability, but sometimes fashion can get you thinking about stuff you might not think about. And I think that's important.
n.b- your postcard project, is it only for people in Canada? I live in London and I wouldn't mind getting something anime/manga inspired in the post.
Wishing you sparkleness,
Nargis
Nargis: sending an anime postcard to someone who KNOWS about h.naoto would be a great pleasure. And I send to people on 5 continents, so a LARGE group of brits. Please send me your address to my email: mpsheil at hotmail.com - title Postcard, and you should have your postcard, or first postcard in two weeks.
Hi Elizabeth
That email will be bouncing your way shortly, always nice to hear from another h.naoto fan! Your anime postcards are cute, I have a thing for Gothic angels.
Lets blame Gakt!
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