About This Site: Updates and How You Can Help
Please Scroll Down for Specific Ways in Which People Can Help with this Website: Help has Always Been Welcomed Here
Recent Updates and Additions:
Added: From jen April, 2003
FYI lots of new stuff has been added this month as i have worked on this site more in recent weeks than most of the time since it has been online (two years), and so there is new content. However, there are also several pages that are not finished, and won't be getting finished by me. I'm not physically able to work on this site a lot most of the time, however, I won't be able to work on it at all for an idenfinite period of time soon, due to losing internet access.
This page (as the old page about Who we are, etc was outdated and removed a while ago, and information on how exactly people can help has not been on here, this seemed like a good page to add, and in the future will hopefully be more descriptive)
New intro on the main page with readding the old banner i had removed a while ago by mistake, and re-adding something similar to the original writing on Ali's SCATS flyer (equal rights, equal treatment, equal access, equality)
Poetry Section with Two Poems added originally submitted in 2002 for zine never published or ezine idea
Essay, "Stupid Things People Say" - originally submitted in 2002 for sick with a voice ezine idea or the SCREAM zine, never published
Submission Page: New call for writing submissions (different from the old page which was for the zine and ongoing, and removed a long time ago), as right now i'm the only one working on the site, it's limited - we cannot take submissions indefinitely since there's no one to add them and we can't take tapes, since we never got volunteers to transcribe them - i wish this were not the case, but this is one of many reasons why we could really use help with this website (hint!!!)
Crisis Help page with links, phone numbers, resources (still in progress) and i could use some help on this too
New Page - Disabled Women's Groups worldwide - this is a task-in-process which may take a while but there are groups around the world, national groups for women with disabilities (lacking in the US), in many nations, and then some groups and listservs where wwd's network internationally, and conferences - i thought we should finally have some such information here so started trying to put it together, it is VERY minimal right now, but will hopefully grow and that will take some time)
Added many more books to the book list - specifically some on disabled women in general (an area where our book list is really slim), eating disorders and body image, child abuse and sexual assault, etc...
small bit of info on main page about queer disability conference in 2004
-New page! book excerpt i love from a book by DAWN Canada, listed under Books on index page now, at wearewomen.html. Describes language used about women with disabilities and how specific words and phrases are disempowering. I've had this book for a while and due to problems with organizational issues which are related, actually, to the way my brain works, I couldn't find it. Eureka.
-new poem, submitted (wahoo - someone finally submitted something new)
-New Page: Economic Rights, for resources on affordable and accessible housing, homelessness, poverty and financial assistance, welfare, etc.
-adding new essay submitted regarding wheelchair use and reactions from people (mywheelchair.html
-added essay from Amy, which had no title (as the one above had no title also, so i put titles on them, if someboody wants to give their own writing a different title, they can but it will have to be when a person who is willing and able to work on this website can change it for them).
-New Writing Index page for all the writing on the site,so it is a little more organized and easier to know what the articles are about (somewhat)
-Several new essays and poems! Thanks to all the people who submitted stuff
-something i wrote for the essay section, kind of a ramble
-two beautiful poems (i'm smiling - i love poetry), just submitted
-there's a gyn health page i started which is not linked to the main page yet as it is barely begun and needs much work like links on endometriosis, and all gynecological cancers, etc...something for the future
-updated the mental health issues page, which was in seriously sad shape, and i had not looked at it in a while, so now the font problem (there was a huge Ariel Black font there) is corrected, and a lot more resources have been added for mental illnesses that should have been there a long time ago when i started that page and never got them there...it could still use a lot of improvement
-New page of tips for anybody who works on this website on how to use homestead and how to work on this site. We just had a new person volunteer (good news!) and hopefully other people will again in the future, so this might be of use.
Updated:
-moved webrings off the main page to new webring page, which might mean none of them work now, but not sure they were working anyway....it's been a while since anyone worked on them and email addresses, etc, have changed - anyway we discussed a very long time ago that it would be better not to have them all cluttering the main page so hopefully nobody minds that they have been removed, if they do not work now, i could use help in fixing that at some point
-main page, reorganized essays, etc, again (several times in the past few days, i think it will be staying like it is for now as i have no energy to work on it more)
- trying to attempt at organizing the general links page - something sara started ages ago which we could definitely use help with
-just noticed i had put information on the mental health issues page a long time ago which i forgot was there, and have put some of the same information on the crisis hep page which needs work, but will correct that (feel free to point such mistakes out if you ever notice them, btw, as my memory isn't always great)
-added an essay (unfortunately mine, since we have gotten no new submissions yet but i'm removing others of mine soon) "On Being a Ghost"
-about to add to the index page info on the 2004 conference for queer disability issues which i read about, some people might be interested in it
updates before this, but also very recently:
-Book List (updated several times recently)
-Chronic Immunological and Neurological Diseases Page (CIND)
with more links and information on CFIDS, autonomic nervous system disorders, environmental illness, FMS, also added listing of pen-pal networks, added information on suicide in CFIDS
-the submission page: information that should have been there originally but wasn't - explaining we do not have the ability to accept submissions any way other than via email, and also that we would welcome submissions from women with any type of disability, despite that this website tends to look like it is geared more toward women with chronic illnesses than other disabilities, basically
updated crisis page, updated general links page and index page (again)
-minor fixes on many pages, adding links to many that didn't have "return home" links, and some other stuff....
-tried to organize the general links page a little better (we started that how long ago??) it's still in need of lots of work, which i can't do right now
Removed:
-removed Stuck in a House (by author, jen)
- removed name off the main page for somebody who wants to not be named now
-Soul Powers (removed by author, Saphie)
-Depression (removed by author, Jen)
A bunch of graphics were removed, in order to make the main page load faster (it has always been very slow to load, due to too many graphics), also every page size was reduced to make them easier to load, several other changes were made on many pages in order to make the site look better overall and remove outdated information (note: the gay/bi/etc. pride flags were not removed for any reason other than the fact that this site had too many graphics on it - and since i'm not the person who first put those here, i was hesitant to remove them so one is still up)
How You Can Help with This Website:
This website was always meant to be a collective effort. It started in 2000 as part of the group Sick Chicks and Twisted Sisters which was created and named by Ali. The website was started by Jen who is now the only person working on it (April, 2003).
In the past other people have worked on this site, including Saphie who has help keep this site online, Teresa who helped add content when we were getting submissions in 2001, and a couple of other people worked on it a little bit when it was first created, including Ali and Linda and Lauren, who checks the sickchicks email account.
However, we have always needed more volunteers, to make this site more comprehensive, and basically, we never got a lot of volunteers. Yes, we did try to get some, many times.
There are reasons why we have had trouble updating it, and working on it. Everyone who has worked on this site is disabled by a chronic illness, most of which involve physical pain after a lot of typing or sitting in a chair, severe energy limitations, and other problems that have made website work not easy to do.
Some people who would help if they could cannot type or use a computer much at all, and are not physically able to help.
Also, personally I have a very old and poorly functioning computer which at this time (although I'm doing a lot of work on this site and another site on Homstead), makes it impossible for me to view what websites on Homestead actually look like, in a browser. So the main person working on this site right now can't see how it looks when she's done. Kind of a problem.
If you would like to help please email me (Jen) directly at selfevident@care2.com and if you never hear back from me for some reason, eventually try sickchicksandtwistedsisters@hotmail.com. I haven't been on the SCATS email list in a long time, and cannot be reached there. The website is not being worked on by people on that email list at this time.
Please put something like "Web Site Help" in the subject of your message.
Update: In case you want to see what some of this involves (it's really easy when you get used to it), there is now a page with some basic tips on how to work on this website up for anybody who works on the site to use.This is only basic stuff which doesn't go into how to add HTML and graphics (yet), but since what most people volunteer to do is this sort of adding content, these tips might be useful. If it's confusing, rest assured at least one person is willing to totally walk you through this via email if you want to help but need instructions that are written in a way that makes more sense to you.
So, in case you would like to help, and are able to do so, here are some specific ways in which people who are willing and able to do these things, can help.
What are the benefits of helping?
You can know that you are providing information to women who need that information and might not otherwise have it. You can be giving information to women like yourself about a disability you have, and putting up information that you yourself have found useful. You can know that, whether you ever hear from them or not, people will be seeing what you created here, and some people will be very grateful for it. In the two years this website has been up, thousands of people have seen it (as you can see from the page counter on the main page). Many people have let us know via email, emai lists, and entries in the guestbook, that they are glad this site is here.
Here Is How You Can Help (if you are able to):
-If you know how to use Homestead already, that would be most useful, as Homestead is not like other website hosts. If you already know how to use Homestead, we could definitely use your help.
-If you do not know how to use Homestead, but are willing to learn, we could use your help. Homestead does not require any knowledge whatsoever of HTML or how to make websites the real way. It is done with java applets, meaning, it is done without you actually doing the technical stuff.
-If you can't work on the website at all, but still want to help, see below, because we can still use your help especially with link collections (WE REALLY NEED HELP WITH THIS AND IT WOULD BE VERY USEFUL)
-link collections on specific topics (see below)
-send information for the Crisis Help Page that is not on this site already (such as national hotlines for wherever you live regarding domestic violence, sexual assault or suicidality and depression, or general crisis help); send this to me please, unless you can help add them to the site yourself, then read below
-help organize the links on our general links page which have been in desperate need of further organization for quite some time now
-if you have a PO Box you're willing to give out, and are willing to transcribe tapes into writing, there are women with disabilities who cannot type but who could send audio tapes which we could put on this website if we had both a PO Box and a person who could transcribe them
What We Need:
-Links Collections with Descriptions on Specific Topics: this is specifically for people who cannot work on the website themselves. If you are not able to work on the site yourself, but you are willing and able to compile a link collection on a specific topic, either by yourself or with the help of some other people, you can do that, and send it to us. Then myself or some wonderful volunteer who comes along, will at some point in the future, add it to this site.
These are the kinds of links we like to add: Sites with information, including medical information, treatment information, and research (information is power), sites for support dealing with a specific topic, sites on advocacy and activism for a specific type of disability or illness, sites of organizations that deal with a particular illness/issue. Personal websites which contain very little content, are not the kinds of sites we like to add here, as we really want to have sites that help people get to useful resources, more than just linking something because it pertains to a topic. Example, please see the CIND page where we tried to get as thorough as possible on CFIDS, FMS, MCS and related illnesses. There are MANY other types of illnesses out there which could have such pages on this website if somebody was willing and able to put the information together.
Example of the kind of site we are not looking for: Say there is a website by a woman named Emily who has Lupus. The website is not about Lupus as much as it is about Emily, and her life, her cats, her hobbies, her personal religious beliefs, her political opinions, and then she has a webring to Lupus websites and one page talking about her experience with Lupus. This is not the kind of website we are looking for, because, women with Lupus will not find that website as useful as they would a website that was specifically pertaining to Lupus itself.
Some examples of topics on which we could use pages:
-Autoimmune Diseases (all of them, or pick a particular one), such as MS, Rheumatoid Arthritis, Lupus, Scleroderma, Sjogren's Syndrome, and many more. Also we could definitely use some information on HIV and AIDS.
-Neurological disorders, diseases and disabilities: Examples - Epilepsy, Traumatic Brain Injuries, Autism, Parkinson's Disease, Alzheimer's, Attention Deficit Disorder, Peripheral Neuropathy, general websites on neurology and neurological disorders, and more
-Gynecological Disorders:Such as Endometriosis, Polycystic Ovary Syndrome (PCOS), ovarian cysts, fibroid cysts, all cancers of the reproductive system (ovarian cancer, cervical cancer, breast cancer, etc....),
HPV and cervical dysplasia, getting your annual pap smear and breast exam, tips for disabled women on gyn health, etc, places that offer low cost or free gyn exams.
-Deafness and Hearing Impaired issues
-Others you might think of on your own
If you can compile, either by yourself or with the help of someone else online who you might know, who might have the same type of disability and be willing to help you compile links - then send these links to use, preferrably with descriptions whenever possible as to what the website is (can be very brief, and it's ok if you can't describe them all, but it is really best to have some kind of description with links when you can do so) - then we could add a whole page for your links here, and this site would be more comprehensive
What Would Be Extremely Helpful: If you can work on the site yourself
-People who want to create pages about specific types of disabilities could do so, if they can take the time to put up a collection of links related to a specific area of health or disability (example: Neurological disabilities, gynecological issues, etc)
-People who can't do a whole page, but can take the time to add some links to such NEW pages (we really have enough links already on some other pages)
-If we get new writing submitted we could use someone to create new pages to add these submissions, and link them to the main page
-If we had someone who could do the above, we could be accepting new writing submissions a lot more often
-If you know of good books for women with disabilities, you could add them to the recommended books page
-If you can work on this site off and on, when we get recommended books emailed to us, we could send them to you and you could add them to the site
-We have some outdated web rings here, it would be helpful if people who have the time and energy to do so could go through and check on which ones are still working, which are not, and possibly help us remove the old ones
-We need to move all the webrings off the main page and onto a separate webring page. Problem with this has been, they were originally all added with the webrings linking to the main page, therefore, if we move them, they will all no longer work. This means, we need to re-register our site on every webring or go in and change the site address on the webring sites. Problem with that has been, over time those of us who put the site in webrings have not maintained the same email addresses and don't remember all the passwords we used. We're working on this - slowly. We could use help with it. The site would look a lot better without all the webrings on the main page.
-Input - if you have ideas for things you would like to see on this site which are not here, and which you are able to put here yourself, this could be very helpful. Unfortunately input from people who can't work on the site themselves is not really useful right now since we don't have people to do these things.
-Funds: In the future, to keep this site online, we are going to have to keep paying Homestead money. See below for details.
About Homestead
-Why is this site on Homestead? When the site was created, Homestead was a free service. It was one of the few free services that was something people who could not create websites in other ways, could use, and at the time it seemed like the best option to make things easier so more people could be involved. Also, Jen was the person who started it and she doesn't know a lot of html.
Do we like Homestead? No, we don't. Homestead started charging money after we were using it, and anyone who did not start paying them would have their sites removed (or cut down to a size that would be basically nothing), so we decided to pay them to keep this site online.
We could use help, in the future, in paying Homestead to keep this site online.
Why don't we move the site elsewhere? Because the person who has worked on it the most couldn't work on it if it was in straight html, and there haven't been any other volunteers to take over keeping it up and working on it if this was done. Also, we don't know that this can be done, due to the nature of Homestead.
How easy is Homestead to use?
That really depends on how much you have done on the internet. If you are able to, for example, cut and paste things, you can at least add links here, pretty easily.
However, Homestead is not fast. In our experience it is VERY slow to use online, as several of us have noted. The easiest way to use it as far as time and energy consumption goes, is to have it all downloaded onto your computer and work on it offline. However, unless you are going to be doing a lot of work on this site, you probably don't want to do that.
If you have a cable modem or DSL, that would make things a little faster, of course. Most of this website has been done by someone with a dial up modem, so it is possible to do it with a slow modem.
