About Jennifer Cole

Jennifer Cole (SL: JennyLin Arashi) is a founding member and Director of the GimpGirl Community. Jennifer is also a research associate in the Experiential Design and Gaming Environments (EDGE) Lab at Ryerson University. She has worked with Oregon Public Health to create state policy recommendations around women with disabilities and sexual health. Jennifer currently resides in Washington State. She is an invited speaker and author on topics such as disability, social media, technology and sexuality.

Domestic Violence Support for Women with Disabilities

Women with disabilities account for over 20% of the general population (Office on Disability Prevalence…, n.d.), and experience rates of abuse 1.5 to 10 times higher than women without disabilities (Sobsey, 1988). However, shelters are largely inadequate to support the needs of women with disabilities who want to escape violence. According to a study by Nosek, Howland and Young, 83% of shelters offered or made referrals to temporary wheelchair accessible housing, 47% provided interpreter services to deaf or hard of hearing individuals, and only 6% offered assistance with caregiver services (1997). Additionally, even if services are available, staff only receives disability awareness training in 36% of shelters (Nosek, Howland & Young, 1997). When a woman contacts a domestic violence service, she often ends up having to educate the staff about disability. She may even end up emotionally supporting the staff through the awkward exchange of dubious information. The dearth of services – combined with a profound lack of access to information — often leaves women with disabilities feeling like there is no escape.

The absence of support for such accommodations for women with disabilities is largely because the general population is unaware of the rates of abuse this demographic experiences. The dearth of information is simply an outcome of this severe lack of awareness. People have no idea that rates of violence can be up to 62% over a women’s lifetime, and much higher for women with severe learning disorders (Nosek, Howland & Young, 1997). Women with disabilities — from every demographic — experience higher rates of abuse than women without disabilities.

When a woman with a disability experiences domestic violence, the perpetrator is usually an intimate partner, family or caregiver (Nosek, Howland & Young, 1997). Economic constraints or lack of independent ability to leave a violent situation puts women with disabilities at a severe disadvantage. They can be completely at the mercy of those around them, and without a safety net of other family assistance or community services, women with disabilities have no way of escape. Unfortunately, shelter services are notoriously incapable of handling accommodations — such as wheelchair access, sign language interpreters, caregivers and other disability specific needs — required by domestic violence survivors with disabilities.

Violence is often a crime that takes the path of least resistance. Women with disabilities are easier to control economically, physically and emotionally due to a myriad of reasons, such as stereotypes, their potentially lowered ability to make money (due to practical or systemic constraints), and dependence on inherently problematic institutions and social services. They are often raised with heightened forms of infantilization and pedestalling. “Good” girls and women with disabilities are compliant, grateful, and constantly happy, while often simultaneously being treated like a burden to those around them. If disabled from birth, that may be all a woman with a disability will expect of herself. They are “easy” targets for perpetrators of violence, especially because of their limited ability to escape the situation.

In order for the deeper issue of awareness of violence against women with disabilities to change, people would have to face the facts behind violence against women in general, as well as deeply ingrained stereotypes about people with disabilities. “Good” people would never dream of perpetrating violence or rape against women with disabilities, predominately because they do not view women with disabilities as sexual or threatening. They do not understand that abuse and rape are not about who deserves it, mainstream stereotypes of sexual attractiveness, or the ability of the person being abused to defend themselves. It is about control, and vulnerability only makes control easier.

A woman who needs assistance may have no idea where to find support when she experiences domestic violence. It is the responsibility of shelter agencies to provide this basic information to women with disabilities, even if there are no services available. Women with disabilities are often put in the position of having to fight through a maze of bureaucracy to find out that there are no supports available – effectively revictimizing a woman already in crisis. Even knowing what is not available allows an individual to allocate precious energy to workable alternatives. This information is vital to someone seeking assistance, and the lack of information only adds to the profound silencing women with disabilities in this situation experience.

Women with disabilities face rates of abuse that are 1.5 to 10 times greater than women without disabilities in any demographic (Sobsey, 1988). Yet, they often do not receive the same supports that women without disabilities in domestic violence crisis receive. They face the same violence in profound isolation and silence, with less ability to protect themselves. When they do reach out to find a safer situation, women with disabilities are met with confusion and a severe lack of information on what little services are actually available. This should not be acceptable in the domestic violence support community – a community that was founded on feminist principles to assist women seeking safety and alleviate the silencing that often accompanies abuse.

s.e. smith also wrote about this issue on the This Ain’t Livin’ blog earlier this month: Access Denied: Crisis Centres and Disabled People. Check it out!

Bibliography

Nosek, M.A., Howland, C.A., Young, M.E. (1997). Abuse of Women with Disabilities: Policy Implications. Journal of Disabilities Policy Studies.

Office on Disability Prevalence and Impact Fact Sheet. (n.d.). U.S. Department of Health & Human Services. Retrieved February 29, 2012, from http://www.hhs.gov/od/about/fact_sheets/prevalenceandimpact.html

US Department of Justice. (2002). Americans with Disabilities Act Questions and Answers. Retrieved March 9, 2013, from http://www.ada.gov/q%26aeng02.htm#Public

Sobsey, D. (1988). Sexual Offenses and Disabled Victims: Research and Practical Implications. Vis-A-Vis.

GimpGirl Community’s 15th Anniversary Celebration

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!

Accessible Gynecologists

 

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!

GimpGirl Turns 14

Today marks the 14th anniversary of GimpGirl Community! We have taken many forms in the last 14 years, but our mission has always remained the same: to bring together women with disabilities in the spirit of mutual support and positivity. That single mission brings together individuals with many different disabilities from a variety of countries and backgrounds to share our commonalities.

Our community’s administrators and facilitators have always been women with disabilities who volunteer their time because they believe that our community should be strengthened from within by people who understand the lived experience of being a woman with a disability.

We have also grown through the support of many others. Indeed, it is through volunteerism, in-kind donations of services, creative management of available resources and the use of open source and free to use online tools that we have survived and flourished.

Do you have any stories, anecdotes or favorite memories of your time with GimpGirl? We would love to hear from you on your experience of the last 14 years!

Spotlight: Sins Invalid

Every now and then we like to spotlight organizations other than our own that in some way support the voices of women with disabilities. Check out Sins Invalid!

What is Sins Invalid?

Sins Invalid: An Unshamed Claim to Beauty in the Face of Invisibility (aka “Sins”) is a San Francisco/Bay Area based performance project that incubates and celebrates artists with disabilities, centralizing artists of color and queer and gender-variant artists as communities who have been historically marginalized. For the last five years, our performance work has explored themes of sexuality, embodiment, and the disabled body to sold-out audiences.

What people say…

The world of enforced and embodied norms constricts all of us, regardless of where we identify on the spectrums of sexuality, gender, or ability. In this project, people with disabilities are engaging in the wholeness of our bodies and our sexualities. When people experience our shows they are deeply impacted:

“I am moved beyond words, moved to an emotional state that I can’t quite explain. Thank you for making this space possible!” – audience member 2011

“You are brilliant and beautiful and help me remember that so am I.  Thank you.” – audience member 2011

“What makes Sins Invalid so powerful is that it thoroughly succeeds artistically and erotically, separate from the impact of its political message. Sins Invalid challenges its audience to think about sexuality, beauty, and disability in new and expanded ways. But Sins Invalid is also, quite simply, a hot, arousing, sexually charged evening of thought-provoking, imaginative sexual entertainment that only happens to be entirely by and about people with disabilities.” – David Steinberg, SFGate

Want to support Sins Invalid and their upcoming movie project? Visit their Kickstarter page and help them reach their goal by February 14th! Can’t donate? Just help by spreading the word to friends!

Featured Work: Margie Suarez

One of the focuses of GimpGirl Community is to spotlight the work and voice of women with disabilities. Below is three amazing poems from Margie Suarez. Want your work featured? Contact us and let us know!


My name is Margie Suarez. I am working towards a Masters in creative writing.  My favorite poet is Maya Angelou. I would like to thank my family and friends for encouraging me to continue writing.

Continue Reading Featured Work: Margie Suarez

Balancing Relationships

This article was originally posted on Yahoo! Accessibility.

In our previous article, Caregivers and Relationships, we gave a very broad overview of managing paid caregivers and various other relationships. Relationships are more than just managing caregivers and other people in your life. In long-term romantic relationships, particularly, there are many factors involved in creating a healthy and safe emotional space to help the relationship to continue. People with disabilities have long been unfairly characterized as being a burden to society, and this characterization carries over into any relationship where there is an expectation of equality. Even individuals themselves struggle to find their own worth and sense of equality within this relationship dynamic.

Everyone has different needs, regardless of disability or ability, and everyone must figure out how to meet their needs and those of their partner in different ways. Unlike the notion of equality, where everything is equal, we prefer the notion of equity, the idea that everyone in a relationship be given fair access to meet their particular and different needs.

Long-term relationships take a lot of work under the most ideal circumstances, and people with disabilities are often beset with complications that are less than ideal. Even with the support of a paid caregiver (or other assistance outside of your relationship specifically for disability accommodations), your partner will probably end up in a position of being a caregiver at some point. Paid caregivers may not show up for shifts or do their job correctly at times. Many of us rely on our emergency support network (including our partners) to get through problem periods and staffing issues. How do we go about keeping our relationships healthy and balanced when one or both (or more) partners has particular needs related to their disability? Our GimpGirl Community members got together and compiled a list of personal suggestions based on what they have learned in the course of their relationships.

Open and Honest Communication

Being open and honest in terms of how we communicate with a partner might seem obvious, but it bears repeating. The importance of communication is noted in every contemporary article written about healthy relationships for good reason. However, when there are additional requirements by one member of the relationship, communication becomes crucial. Everyone in a relationship has to be able to express their concerns and needs, and have those respected by their partner, but more importantly they have to feel that it is safe to do so.

Not only are people with disabilities often socialized to not speak up for themselves, in an effort to “lessen the burden” they place on those around them, but when our partners are put in the role of being a caregiver, they can have feelings of guilt when asserting their own needs. Needs arising because of a disability can often be more immediately obvious, but they should not necessarily be seen as requiring priority. And they may not be as obvious as the person in need might think. Fundamentally, if the person in the role of the caregiver does not assert their own needs in balance with the needs of their partner, the potential for unnecessary resentment is always present. One of the greatest dangers stems from differing expectations and a sense that someone should know something that has not actually been said or explicitly stated. No one should be expected to have to guess what their partner needs or feels.

A simple example of this dynamic: a person with a physical disability really needs help going to the bathroom and their paid caregiver has left for the day. They ask their partner for help, not knowing that they both really need to go to the bathroom at the same moment. Ideally, a brief discussion would be initiated wherein both decide who gets priority in that particular situation. This situation may seem silly, but it is a really common one that arises. Situations like this often can lead to feelings of resentment if not dealt with in the moment through open communication. The most simple, taken-for-granted, assumptions often lead to the greatest conflict. And when one takes the time to acknowledge the needs of others, even when wanting to take priority, there is the greatest chance for open dialogue and sharing.

Sharing and listening to each person’s views on disability and caretaking, and how the views have formed can clear up a lot of the misunderstandings that stem from being confused and hurt by unexpected reactions. This is especially true for friends or romantic partners who come from different backgrounds or experiences in growing up. Plan to have this conversation intentionally at a time that works for both or all of you, and feel free to repeat as necessary.

Another really important conversation to have relates to what protocol to follow when stress levels are high, or you are upset with each other. A couple needs to know how to communicate when there is anger or frustration. When complications arise of any sort, both individuals need to know how to ask for their needs in that moment. If you are in the middle of a fight with each other, and one of you needs help with something that’s really important in the moment (again, like going to the bathroom), how will that be handled in a way that is fair to both of you? What should someone do if they need space, and how will you handle any emergency needs in order to respect that person’s space? How will you support the needs of your partner when you are also frustrated or in distress? These are all questions that can be answered, and should be addressed before the situation arises in order to maintain balance within the relationship.

Getting Support

Everyone needs support, and no one is capable of independently handling everything life throws at them. We all live within the massive support structure that is our culture and society.  Whichever member of a relationship has a special need, sooner or later both partners will need assistance and support from paid professional caregivers, and emotional support such as counselors or friends. Getting meaningful input, support and an external perspective from others is vital in keeping a healthy balance in all relationships. One important thing to remember in relationships where disability is involved is that ideally these outside supports should be peers or professionals who have experience with this type of situation. Too often people who have no experience with this type of situation have extreme biases that do not reflect the reality of the lived experience that those of us with disabilities have.

It is still a commonly held view in society that people with disabilities are a greater burden than others. Even if someone does not say this overtly, it is so pervasive a thought that it influences the opinions of many as to what is happening within your relationship dynamic. Most people will see the person with the most apparent disability as the greatest receiver of effort and energy in the relationship, even though that may not be the case at all. Everyone has both needs to be met and assets to share in a relationship. Just because someone has a very obvious physical or social need, such as requiring help going to the bathroom, or functioning in a social situation, does not mean that they do not more than make up for what they appear to lack in some other part of the relationship, perhaps in their financial sense, wit, insight and wisdom, compassion and humor, or skills with non-physical or social contexts.

Perspective

Physical help is often the most overt form of assistance one might require, but the support lent by both people must be understood and honored to maintain a healthy balance within the relationship. This is even important for the person with greater apparent needs. It can help him or her with self esteem and related issues that often stem from viewing him or herself as constantly receiving and not contributing to the relationship in equitable proportion. It is important to remember that this is a commonly held societal view, even when not promoted by those in a relationship. Most people with disabilities are steeped in this mindset if they are raised with a disability, and have been taught to believe that they are always the recipient of charity.

Keeping a relationship balanced requires that we strive to maintain a perspective regarding the help that both parties provide, and the beneficial impact of that balance on the quality of life for everyone. Human relationships are complex, and all healthy relationships require a balance of give and take. Collectively discussing what energy each of you is putting into the relationship and how you both add to a healthy balance will help keep perspective in the long run.

Mindfulness

Try to be mindful of the impact that physical states have on mental and emotional health. The fallout from stress caused by crabbiness from pain or exhaustion can have unintended and very intense side effects for both people, and your own frustration borne of discomfort can have unintended consequences. Also be mindful of panic triggers2 that both people have.

If there is a stretch of time where any partner has greater needs than usual, or has reduced outside support for those needs, be mindful of how that additional stress is affecting others, whether they are directly acting as a caregiver or not. Be gentle with each other. Life and love can be hard enough without any complications. Nobody is perfect or should expect perfection in another human being.

Conclusion

How are these thoughts different from any recommendations for a healthy relationship? There is little difference. Relationships are always as fraught with challenges as they are with joys. However, people with disabilities are often socialized to think of themselves as being a burden and taught to not speak up for themselves. Also, because of the complications involved in managing accommodations and services, both people with disabilities and those around them can put too much emphasis on those needs. Everyone has needs and countless successful relationships have proven that those needs can be balanced when everyone understands the strengths of the individuals involved.

What has your experience been? Are there any lessons you would add to this list?

Footnotes:

1 Caregivers (also called carers or personal care assistants) perform many different duties depending on what is needed by an individual. For people with physical disabilities, this can include help with “daily living activities” (DLAs) such as bathing, dressing, and eating, as well as help with cleaning the house and getting to medical appointments. For people with other types of disabilities (though the individual may be called something different depending on the situation), the needs are very open-ended, and can extend to whatever a person needs to engage with the world to the greatest extent possible.  Ideally, as we have written about in previous posts, the caregiver (or other type of assistant) is predominantly an individual who is not in any other type of relationship with the person they are employed to support. However, complications arise when a romantic partner is the primary caregiver for their partner.

2 A trigger is something that causes an emotional reaction in someone. A trigger can be a touch, a sound, certain words, behaviors, or any number of events or situations which cause someone to either recall traumatic memories or just react with panic or some other emotional response. Sometimes people know that they have triggers, and sometimes they do not. However, learning what your triggers are and those of your partner can be profoundly illuminating.

Engaging with the Community

Since the launch of our new website earlier this month, many of you might be wondering how to engage with our awesome community of women with disabilities outside of this website. Take a moment to look to the right of this post (on our website), where you will find a collection of icons (under “Follow Us!”) for various social media and online tools that GimpGirl uses. Each of these icons link to our specific group or page. They are a great way to find us around the Internet!

On Facebook, we have an amazing, active forum for posting links, sharing stories and ideas, and discussing various relevant topics. Outside of our weekly meetings on Second Life and our Chat Room (IRC), our Facebook group is probably the best way to connect with other women with disabilities.

What if you just want to keep track of blog posts or events? Twitter is our largest group, and is a great way to keep track of links to relevant news topics and GimpGirl’s events. You can view our Google calendar to see upcoming events, as well as subscribe to the calendar to see the event times in your time zone and sign up for notifications when events are getting close. If you use an RSS blog reader, you can add our RSS feed. If not, you can also follow our various groups and communities on FriendFeed.

Our Flickr community is a must-see, with member pictures, event snapshots, and various works of art. On LinkedIn, you can network with other women with disabilities on employment and other professional matters. If you would like to buy various items with our logo on them, visit our Zazzle store (hosted by NoPityCity).

So, what are you waiting for? Connect with us and join the conversation!

Stop SOPA/PIPA

We here at GimpGirl have a 14 year history of showcasing compelling, original stories that are the direct personal experiences of women with disabilities, as well as curating the best material to support our members in leading their kickass lives.  We get to tell innovative, creative stories that no-one else is telling.

If SOPA/PIPA passes, it could genuinely become too expensive and too much of a potential legal problem for us to be able to continue our curation practices, or even to tell stories where women say things like “I saw a movie and it inspired me to change my life.”  Or worse, it could mean that Google considers this too much of a risk to index our site, so we won’t be able to be found by women looking for information.  Under SOPA/PIPA, ANYWHERE that people express themselves – our site, our LiveJournal, our Facebook group, our Twitter, our Second Life – could become too much of a legal risk or get shut down.

Please support SOPA/PIPA actions today to keep the Internet free and safe for everyone – especially rarely heard voices like women with disabilities.

Here are some links on PIPA/SOPA:

Clay Shirky gives a 10 minute speech on the topic (video, not
subtitled) – http://www.ted.com/talks/defend_our_freedom_to_share_or_why_sopa_is_a_bad_idea.html

Fight for the Future
http://fightforthefuture.org/pipa
(Subtitled version of video here:
http://www.universalsubtitles.org/en/videos/5A31ep7v6HFd/)

Google’s Take Action Page
https://www.google.com/landing/takeaction/

Huffington Post on the blackout:
http://www.huffingtonpost.com/mobileweb/2012/01/18/sopa-blackout-internet-censorship_n_1211905.html

Mashable on the blackout:
http://mashable.com/2012/01/18/sopa-dark-ages/

The New Year

When most people think of New Year’s resolutions, they picture easily made and easily broken promises. I like to think of the New Year as a time for reflection and self-guidance — a time to look back on the year behind us and what we have learned from those experiences, and a time to look forward into the new year to see how we can use those lessons to get closer to our goals.

Most of the GimpGirl regulars know that, for me, the last year has been one filled with a great deal of difficulty. The summer saw a sudden end to my long-term relationship, which sparked an interstate move and an endless cascade of problems with arranging social services and dealing with various other issues, on top of continuing school and my work here at GimpGirl. It has not been easy, to say the least. At times it looked as if I would end up in a group or nursing home on a long-term basis, something I fight very hard to avoid. It has been soul crushing, heartbreaking, and has tested every ounce of my somewhat renown tenacity.

As a disabled disability advocate, I feel it is important to share this experience. Sharing experience is a big part of how our community learns from each other. I often encounter assumptions that advocates don’t experience the same kinds of struggles and barriers that many other people do. We do, and it is just as difficult for us. We also know that what we do for ourselves affects those that come after us.

I have learned so much in the last six months. More than I ever thought possible. I have learned even more about navigating the system, what housing options are available to people with disabilities, what specific terminology to use when being assessed for caregiver funding, federal laws and statutes, and a multitude of other things. What I was reminded of more than anything was to stick by who I am as an individual. I am worthy, and the goals I set for myself are worthy. It was a reminder to not let anyone change me, because who I am is pretty awesome even if not everyone thinks so. It was also a reminder of how vitally important having a community is. Without my GimpGirl family – all of you amazing women who understand what facing these struggles is like – all of this would have been unbearable. When I was tired, these reminders would echo through my mind, keeping me from giving up when everything was telling me to.

As I go forward into the new year, I will take those lessons with me into my own life and in my work with GimpGirl. I am already seeing the light at the end of the tunnel, but I know that in order to fully realize what I want from my own life I will face many obstacles in the months to come. However, having looked back at the previous year, I know that I can face it. I know that the struggle is worth it. I know that I am worth every bit of energy I put into myself and my dreams. I believe in myself, probably more than I ever have after facing all of this.

I look forward to the year ahead. I look forward to working with other volunteers to make GimpGirl an even better community, with more community-created content and outreach. As we begin our 14th year together, I look forward to getting to know all of you even more. I am grateful for every one of you.

— in solidarity… Jennifer Cole