Author Nicola Griffith and founder of the Disability Visibility Project Alice Wong will be hosting the fourth #CripLit twitter chat on Sunday, December 4 to discuss issues important to disabled writers of all types. Topics will include using writing as a form of resistance, increasing the visibility of your work, self-care and community.
On Monday, September 28, GimpGirl representative Katherine Mancuso participated in Adios, Barbie‘s #AdiosStigma Twitter Party, to discuss the issues surrounding invisible illness and celebrate Invisible Illness Awareness Week. The discussion included several panel members with both professional and personal experience, and covered a wide range of topics including confronting ableism and related caregiver issues.
In an effort to continue the discussion on invisible illness, we are sharing information compiled by the awesome folks at Adios, Barbie. To access the infographic image, click or select the thumbnail image associated with each infographic text.
- More than 125 million Americans are living with at least one chronic condition
- Over 95% of people living with an illness have an invisible illness
- 60% of those with invisible illnesses are between the ages of 18 and 64
- 4 out of 5 health care dollars in the US are spent on chronic or invisible conditions
- For 34% of people, the person closest to them with an invisible illness is a parent
- Rates of depression are 15-20% higher for people with invisible illnesses
By: @AdiosBarbie for #AdiosStigma
Infographic: “Mental Illness is the most common invisible illness on College Campuses.”
- Stigma is the number one barrier that stop students from seeking mental health services.
- 73% of students experience a mental health crisis while in college.
- Only 13% of students would rate their college’s response to mental health as “excellent”.
By: Adios Barbie for #AdiosStigma
Infographic: “Mental Illness On Campus”
- One in 10 students contemplates suicide
- 64% of students who drop out of school do so because of mental illness
- Nearly 75% of students experience a mental health crisis in college
By: Adios Barbie for #AdiosStigma
Infographic: “The Costs of Caregiving”
- 65% of caregivers have not had a vacation in the past year. 51% of caregivers report no time to take care of themselves and almost half (49%) said they were too tired to do so.
- The out-of-pocket costs for caregivers who are caring for someone who was age 50 or older was $5,531 in 2007.
- 40% to 70% of caregivers have clinically significant signs of depression. Elderly spousal caregivers (age 66-96) have a 63% higher mortality rate than noncaregivers of the same age.
Who is a Caregiver?
- 66% of caregivers are female
- Average age is 48
- 1/3 care for more than one person
- 46% of lesbian, gay, bisexual and transgender elders caregive
By: Adios Barbie for #AdiosStigma
What is your experience with invisible illness? Do you these statistics reflected in your experience?
After much consideration, we will be shifting from having meetings once a week to having meetings once a month. This Sunday, 1st March will be the first monthly meeting. Generally, we intend to have regular meetings the first Sunday of every month. We encourage everyone to subscribe to our Google calendar to keep up with events. We did not take this decision lightly, and we will continue to review all the technology that is utilized or could be utilized as we move forward.
We would like members to know that you are welcome to use our Second Life and IRC chat room space for informal meetings anytime. Other members have showed an interest in continuing to meet every Sunday at 1 PM Pacific informally, so we encourage all members to continue dropping in during this time for casual conversation.
We would like to let everyone know we will be taking a break over the holidays. The meetings on December 21, December 28, and January 4 are canceled. Our support meetings will start again in the new year on January 11, 2015. We look forward to catching up with everyone again then. In the meantime, you can still stay in touch on our Facebook group and on Twitter.
We’d like to take the opportunity to thank everyone who has supported us the past year, all our members and friends of GimpGirl. We are very proud of our community.
We’d now like to ask you, what is your highlight from 2014? What achievements are you most proud of? Do you have any new year resolutions for 2015? Let us know in the comments below!
How do we function as an organization? People often ask about our somewhat unique way of getting things done. GimpGirl Community has been around for almost 16 years now, but because we often operate behind closed doors most people don’t understand how this community works from an “administrative” level.
We are a relatively well-known group in certain circles, and the prevailing stereotype of relatively well-known groups such as ours is that of a well-funded, corporate nonprofit with a full staff who often presumes to know more about the people they serve than the people themselves. I promise you we are none of those things.
GimpGirl has never been — and never will be — a well-funded corporate nonprofit. We have never been the recipient of any grant, and we do not have a regular source of funding aside from occasional member donations that cover the cost of incidentals like travel and computer equipment. We have always relied on “in-kind” donations of services from supporters (mostly friends of those within our “staff” circle) and individual members. They donate technical services such as server maintenance and computer repair, and various professional services such as editing articles and consulting on the best way to create healthy environments. We also partner with other organizations on services like web servers in order to save money.
Aside from our beginnings as part of a very small nonprofit (which is now defunct), and a brief partnership with another very small nonprofit, we have never been independently registered as a nonprofit. One of the main benefits of being a registered nonprofit is the ability to apply for grants and various other funding. For some organizations, a reliable money stream is essential to carrying out services. However, going down that path also means that a large percentage of human resources must be redirected to continually seeking new and better funding sources.
The U.S. 501(c)(3) nonprofit corporate structure comes with legal requirements, as well as additional provisions required by funding sources – stipulations we are not willing to accept. As women with disabilities, our lives are often subject to the whims of medical and bureaucratic institutions. Our members sometimes deal with homelessness, neglect, abandonment in life-threatening situations, and physical, sexual and emotional abuse. The organizations and bureaucracies that are in place to deal with these situations are often not set up to handle disability needs. As a collective, we have the flexibility to help our members deal with these situations in ways that we would not be able to if we incorporated as a nonprofit.
Even though GimpGirl technically has an internal hierarchy, we often function more like a democratic collective. The hierarchy was established to create a structure to deal with potential conflicts, and to centralize individuals who have clearance to speak for our community and coordinate volunteer efforts. Because we are a community by and for women with disabilities, it is highly beneficial to have a flexible structure that allows individuals to contribute in a way that works for them. Our volunteers not only deal with the barriers that the bureaucracy around disability causes, but they also deal with the complications that many adults deal with – jobs, children, family, relationships.
There are times when we refer to the contributors as “staff,” but we have never paid anyone any amount of money to work for this community. All “staff” hours are donated by individuals, including those who officially have titles such as myself. Our core volunteers also often collaborate with other organizations on projects related to women with disabilities and technology, but they generally do not receive monetary compensation for their efforts even when the project is funded. Volunteers are invited to conferences around the world to represent our community and to talk about the issues we confront, and when we are lucky the organizers pay for travel and accommodations. We are all volunteers working towards a common goal – not because we are paid, but because we are passionate.
The real magic in what we do happens when we bring members together. The women with disabilities that facilitate and participate in this community work together to create the space that makes everything that we do possible. Many members have never had the opportunity to talk to other women with disabilities because of barriers or a lack of people in the local community. A kind of natural co-mentorship forms when you bring people together who understand the lived experience of each other. Our members come from all over the world, and represent a wide variety of different backgrounds and levels of experience. They also have a wide range of disabilities.
Young students come to us struggling with the complications that come with being successful in college to speak to older professionals who have been where they are. Individuals in abusive situations at home come to us to speak with women who have made the transition to their own environment. Women who are pregnant come to speak with other mothers who understand how society treats mothers with disabilities. People simply wondering how to get from here to there to accomplish something they want to accomplish come to ask about accessible transportation. We all have some story or learned lesson that we can share that is meaningful to others.
Involving a wide range of women with disabilities also helps ensure that our community stays accessible to a wide range of people. Our contributors strive to create online spaces that are inclusive to all of our members, because our members make us who we are. Additionally, contributors are all people with disabilities who have their own needs. Instead of thinking about accessibility as a vague idea or a checklist, we think about accessibility as a constantly evolving collective responsibility to work together to make sure everyone can participate. We are successful because we work together with inclusivity in mind from the beginning.
If you have access to an academic library and would like more information about how this community functions, please check out our article in New Media and Society entitled GimpGirl grows up: Women with disabilities rethinking, redefining, and reclaiming community. Everyone can access additional information about this community on this website under the About Us tab, as well as in the numerous articles found here.
Community Liaison Katherine Mancuso and I will also be discussing how our community works today — January 27, 2014 at 6pm Pacific — at the online event Leading Accessible Online Communities. It is open to everyone!
— Jennifer Cole, Director, GimpGirl Community
There have been a lot of big changes behind the scenes at GimpGirl in 2013, but the people who make up our amazing community – you – are still as wonderful as ever. We make connections, we educate, we share stories and successes and failures, and we grow what we are capable of together. As women with disabilities, all the things that we do together to create community benefits us all, and we are all endlessly grateful for it.
We were unable to do a holiday party this year due to technical issues, which we hope to have sorted out by our 16th anniversary in February. Stay tuned!
2013 In Review
We have posted many amazing articles this year, including Domestic Violence Support for Women with Disabilities, Hiring Aides, and When to Say Goodbye to an Aide.
We have also updated our blog roll of amazing blogs by women with disabilities, which you should definitely check out if you haven’t already!
… And there is much more to come in 2014!
Do you have any favorite stories to share from 2013? Feel free to comment below!
Okay, we never really went anywhere. Our Facebook group continues to be incredibly active, and you can always find us on Twitter. However, we did take a much lengthier than expected break from our weekly support group meetings over the summer as we transitioned from our previous site on Second Life.
Thanks to the Baylor College of Medicine’s Center for Research on Women with Disabilities (CROWD), we now have a brand-new space to hold meetings on Second Life. CROWD is run by women with disabilities, and one of their many projects utilizes the Second Life platform to develop and carry out health promotion interventions for women with disabilities. It is a match made in heaven!
We have had many requests over our break for our meetings to continue, and we are happy to say that the wait is over! On November 3, 2013, at 1 PM Pacific, we will be holding our first support group meeting at our new location on Second Life. This meeting is for women with disabilities only. We encourage everyone to show up early to make sure that you can access the new location.
As always, if you don’t choose to (or can’t) use Second Life for whatever reason, you can always join us on our chat room. It is an IRC channel that can be accessed from our website, or by using mIRC or many other free IRC clients. The details can be found on the Chat Room page if you prefer to connect using another client.
We will be having events for the general public in the future, so stay tuned. We encourage everyone to subscribe to our Google calendar, or join one of our other communities to get notices about future events.
Have questions about how to connect? Comment below, or connect with us on any of our communities!
GimpGirl Community’s current Second Life sim will be closing as of May 11, 2013. In June, we will have a new Second Life space set up and will notify everyone when it opens! Until then, we will be taking a break after May 11 from regular scheduled meetings, so our last meeting for a few weeks will be the Hang Out Hour on May 8. We will announce the next meeting as we get closer to opening our new space on Second Life. In the meantime, you can get involved on Facebook and Twitter, or reach us on our website contact form.
A reminder to all current vendors and tenants: Our current Second Life sim will be completely shutting down as of May 11. Don’t wait until the last minute to save all of your objects! If you have anything on our parcel that is irreplaceable, please take it into your inventory as soon as possible. All vendor spaces and apartments will completely disappear on or around May 11. Please let us know if you have any questions or concerns that we can assist you with.
In February we celebrate GimpGirl Community’s 15th anniversary. We’ve come a long way since it was founded in 1998, however our mission remains the same — to support the lives of women with disabilities. We could not do this without the support of our members.
To mark this celebration we would like to ask you to submit your thoughts to us on what GimpGirl has meant to you. It could be a memory, a poem, a piece of creative writing or art work. We will showcase them on our website, Flickr, Second Life, Facebook and Twitter. We are also planning a celebration (details to come) where we will showcase some pieces and show art work in our Second Life gallery and on Flickr. We ask that these be submitted by 28th of February.
You can email your entry to us using the contact form on our website or add pictures to our Flickr group. You can also comment on this post with your memories. What is your first memory of GimpGirl? What is your favorite memory since being part of the community? We look forward to reading them!
A common barrier faced by many women with disabilities is finding a gynecologist with an accessible office and the knowledge and flexibility to work with complications associated with various disabilities. Some time ago GimpGirl members got together to start a list of gynecologists that they had personal experience with and knew to be accessible. Not surprisingly, the list was not very long because of the relative rarity of accessible gynecologists.
However, we are constantly looking for more feedback to expand this list to include other states within the United States and other countries. This information is a vital tool to help other women finding doctors and facilities that they can work with. If you have personal experience with a doctor or facility you would recommend, please take a few minutes to anonymously fill out the Accessible Gynecologists Survey so we can make that information available to everyone!
If you don’t personally have anyone to recommend, consider passing on this information to your friends. Thank you to everyone who has helped gather this information!