#AdiosStigma Invisible Illness Twitter Party by Adios Barbie

 

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.

Get to Know Invisible Illnesses, demographical statistics on invisible illness done by Adios Barbie for #AdiosStigmaInfographic: “Get to Know Invisible Illnesses”

  • 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

Sources: Molly’s Fund, Invisible Illness Awareness Week, and Seattle Dizzy Group.

Mental Illness Is the Most Common Invisible Illness On College Campuses, statistics done by Adios Barbie for #AdiosStigmaInfographic: “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

Source: College Students Speak: A Survey Report on Mental Health, NAMI 2012 [PDF]

Mental Illness On Campus, statistics on mental illness in college done by Adios Barbie for #AdiosStigmaInfographic: “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

Source: Nine out of Ten, National Alliance on Mental Illness

The Costs of Caregiving, a table of statistical information on caregiving done by Adios Barbie for #AdiosStigmaInfographic: “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

Source: National Alliance for Caregiving, American Association of Retired Persons, National Gay and Lesbian Task Force Policy Institute, Caregiver.org

 

What is your experience with invisible illness? Do you these statistics reflected in your experience?

 

Oh, Your Shelter Isn’t Accessible? – And Other Reasons Women with Disabilities Experiencing Violence Cannot or Do Not Seek Help.

This article was written by attorney and advocate Stephanie Woodward. It was originally posted on her blog Ms. Wheelchair Florida 2014 on July 23, 2014. It has been reposted here with her permission.

 


In my last post I wrote about how society’s treatment of women and girls with disabilities can contribute to the domestic violence we experience. Essentially, when you treat us like we’re a burden or like we’re worth less than other women, we start to believe it ourselves. I wrote about this to raise awareness about not only domestic violence against women with disabilities, but also to raise awareness of how society views and treats women with disabilities.

Many women and men with disabilities lauded my post and thanked me for finally talking about this issue. Many women and men without disabilities thanked me for bringing this issue to their attention and truly reflected on their actions and how they could help make a change in how society treats women with disabilities. Unfortunately, some people took this as an opportunity to question and challenge both the domestic violence women with disabilities experience and the societal treatment of women with disabilities. They demanded evidence of the domestic violence rates for women with disabilities and proclaimed that it’s not just women with disabilities that experience such violence.

Well, duh. Obviously others experience this violence, but the point is that women with disabilities experience it at much higher rates. If you want evidence, go to google. The statistics and facts I give you are not from secret sources. They’re from the DOJ, they’re from national and international organizations that spend large parts of their budgets doing research on this issue, and they’re from real women who experience the abuse.

The point is women with disabilities experience much higher rates of violence (Want proof? Check out the DOJ’s Bureau of Justice Statistics that show in 2011 women with disabilities were THREE TIMES as likely to be victims of violent crimes than women without disabilities).

There are many reasons that women with disabilities who experience violence don’t seek help. Sometimes there are physical or systematic barriers that prevent a person from seeking help. Sometimes it’s societal issues, like the self-esteem issue I wrote about last time.

I chose to write about the self-esteem problem last time because that is what I know best. I feel that before articulating stories about other women I needed to share my own, after all, my story is mine to tell. The experiences that other women have gone through are not my own, therefore they are not my stories to tell. However, in order to end violence against women with disabilities, society needs to learn about the problem. We can’t stop a problem that we don’t know exists.

For this reason I am providing you a list of why some women with different disabilities cannot or do not seek help. This list is by no means comprehensive. The examples I have included are real examples from real women who experienced real abuse. I have not included their names or any other identifying information.

Poverty

Many women with disabilities have fewer economic resources, thereby increasing their inability to seek help. Poverty is a factor that prevents many people without disabilities from seeking help. For women with disabilities, it’s a bit different.

Imagine you are a woman living in poverty and you are being abused.  You may not seek help because you fear that you will not be able to afford your own home, food, transportation, and other living expenses without your abusers financial assistance. You may have kids too. How will you be able to support them as well? These are real concerns that people with and without disabilities face.

With disability it goes a step further. Imagine you are a wheelchair user. You live in a rural area with no bus stop in your area. No paratransit either. You certainly don’t have a wheelchair accessible van because those things are ridiculously expensive and you can barely afford to pay your rent. How will you get out of your house to go to a shelter or any other place to seek help? Accessible taxi? Ha. They’re still fighting like hell to get accessible taxis in NYC, they certainly don’t have them in your neighborhood.

Fear

All people who experience abuse struggle to leave because of fear. Every person is different and fears different things, but people with disabilities have fears that people without disabilities don’t usually even think of.

Fear of losing assistance or being institutionalized

Say you’re a person with a disability that requires assistance from a personal care attendant, but your attendant is abusing you. Your attendant started off fine, helped you shower and get dressed, but eventually she became controlling. She started becoming more aggressive when helping you shower and dress. Then she started hitting you when you took too long to put your pants on. A few times when she got really angry she would put her cigarettes out on your legs. You want the abuse to stop, but if you report your attendant then you won’t have anyone to help you shower and get dressed every day. How will you get out of bed in the morning? If you go without an attendant for too long, insurance will deem that it is “unsafe” for you to live in the community without support so you will be sent to an institution. An institution where you lay in bed all day, eat whatever gross food they put in front of you, never go outside, and possibly experience more abuse. What do you do?

Fear that you will get in trouble

Now let’s say you’re a person with an intellectual disability. You live in a group home and one of the employees is sexually abusing you. You know what is happening is wrong, but when the employee touches you sometimes it feels good to you. You’re afraid to tell because you know what is happening is wrong, but you think you might get in trouble because it felt good to you. So you don’t tell because you don’t want to get in trouble.

Fear of Not being Believed

What if you’re a woman with a mental health disability? Maybe you have anxiety or depression or a personality disorder or maybe PTSD. You are being abused by your partner or your parent or someone else close to you. You want to tell someone about the abuse, but you fear no one will believe you because everything thinks you’re “crazy” already.

Fear of Further Abuse

You’re a woman with a disability that lives in the community and your attendant is abusing you. She hits you occasionally when she gets angry, she leaves you sitting in the same position for hours which causes you to get bedsores that become infected, and sometimes she thinks it’s funny to refuse to help you with your toileting needs and you end up sitting in your own feces for hours. If you tell someone, maybe your attendant will find out and make things even worse on you. Right now she only hits you sometimes and neglects you, but if you tell she might start hitting you more or worse. Maybe it’s better if you just suck it up and don’t tell anyone so things don’t get worse.

Inaccessibility

Physical Inaccessibility of Shelters

You use a wheelchair and your husband is beating the crap out of you all the time. You’re fed up. You know you shouldn’t have to take this. You find a way to get to your local women’s shelter to seek help when your husband is out of town for the weekend. You get to the front door of the shelter and you only see stairs. You can’t get in. So you call the shelter while you sit outside, staring at the steps that are preventing you from seeking help. They come out and agree to carry you and your chair inside. It’s humiliating, but you take it because it’s your only way to get away from the abuse. Once you’re inside you try to go into an office to talk to an employee, but the doorway is too small and you can’t get in. They come out and you meet in another area and then show you around the shelter. You try to get in the bathroom, but it’s completely inaccessible. The bed is so low that you can’t independently transfer yourself from your chair to the bed. So you can’t sleep there or go to the bathroom there or even get in and out of the door without others carrying you, how could you possibly stay?

Programatic/Systematic Inaccessibility of Shelters

You have multiple sclerosis. It’s hard for you to walk, but you make it to the shelter and decide you want to stay there to get away from your abusive partner. The shelter says you can stay but has a no narcotics rule. You take prescribed narcotics to treat the extreme pain you experience from your MS. They refuse to make a reasonable modification to their rules for you. So you can get away from abusive partner or you can treat your MS, but not both.

Inaccessible information

You’re blind and your boyfriend is verbally and physically abusive as well as completely controlling. He does not let you have a phone and sometimes he doesn’t even let you go to class. On a day he does allow you to go to school, you talk about domestic violence in one of your classes and different options victims have to seek help but you can’t read any of the handouts. You want to seek help from a shelter, so you skip your next class to go to the school library to google your local shelter before your boyfriend comes to pick you up. Unfortunately the website isn’t accessible so the screen reader can’t read any of the information. You don’t exactly want to ask the librarian to read the information to you either. Why is it so hard for you to seek help?

Communication Barriers

You’re Deaf and you use TTY to call your local shelter. When the person at the shelter answers, they don’t want to deal with TTY communication, so they hang up. You’re upset because you feel rejected when it took you so much courage to finally seek help, but you won’t give up. The next day you go to the shelter for help, but they refuse to get an interpreter so you can communicate with them. You demand an interpreter because you know your rights. You tell them the ADA requires them to provide an interpreter as an accommodation. They finally agree to provide an interpreter during meetings and therapy, but for the other 22 hours of the day you have no access to communication with others. No one else in the shelter knows sign language. You feel so isolated and alone. Maybe it’s better to go back to your partner. After all, he knows sign language. He communicates with you. And he doesn’t always hurt you. Maybe if you go back things will get better? At least you know you won’t be so alone.

Or maybe you have a speech disability. Your speech is difficult for others to understand and often people need to ask you to repeat yourself multiple times in order to get what you’re saying. You don’t mind repeating yourself but most people don’t have the patience to listen to you. Your attendant understands your speech, but your attendant is the one who abuses you. You try to tell others when your attendant is around, but everyone just smiles and nods, pretending to understand you. Will anyone ever listen?

Of course, what if you’re completely nonverbal?

Lack of Understanding

You Don’t Understand That You’re Experiencing Abuse

You have an intellectual disability. Your mom hugs you and kisses and feeds you, but she also yells at you, hits you, and controls everything you do. You know your mom loves you and you don’t like when she hits you and yells at you, but she tells you that she has to yell at you and hit you because you’re a bad girl and she needs to teach you a lesson. You don’t understand that she is being abusive, so you never seek help.

You Don’t Realize Specific Actions Are Abusive

Your husband loves you and he would never hit you. He’s never laid a hand on you. But, sometimes when he’s mad he refuses to let you have your wheelchair. He takes it away from you so you can’t reach it. You end up lying in bed for days sometimes – laying in your own urine because you can’t get to the bathroom. Sometimes you get bed sores from laying so much and twice the bedsores have gotten infected causing you to be hospitalized for days. But that’s not really abuse, right? He loves you. He’s usually very good to you, he just gets frustrated sometimes. It seems like an insult to women who experience real abuse to say that this is abuse. It’s fine.

 


For additional information, please see our article Domestic Violence Support For Women with Disabilities.

#yesallwomen Includes Women with Disabilities

 

This article was written by attorney and advocate Stephanie Woodward. It was originally posted on her blog Ms. Wheelchair Florida 2014 on May 29, 2014. It has been reposted here with her permission.


 

Domestic violence, sexual assault, and rape culture have been getting a lot of attention lately, especially with the #yesallwomen hashtag that has gained some serious momentum. I’m glad that this is on society’s radar right now, because as an advocate for ending domestic violence and rape culture, this is something that is on my mind every day.

Also, as a woman this is something that is on my mind every day. Every day I take steps to protect myself from sexual assault that most men never even think of. Every day I deal with statements and actions that perpetuate rape culture.

So yes, as a woman and an advocate I am glad.

But as a woman with a disability and an advocate for ending domestic violence against women with disabilities, I am disappointed.

I’m disappointed because these conversations about ending the violence, stopping the assaults, empowering women, and all that jazz never include women with disabilities.

This is a huge problem.

Why?

Well, for many reasons, but here’s just a few:

  • Women with disabilities are at least twice as likely to be victims of domestic violence and sexual assault than women without disabilities.
  • Women with disabilities experience abuse that lasts longer and is more intense than women without disabilities.
  • Women with disabilities are less likely to report domestic violence or sexual assault. Approximately 70% – 85% of abuse against people with disabilities goes unreported.
  • Studies estimate that 80% of women with disabilities have been sexually assaulted.
  • One study showed that 47% of sexually abused women with disabilities reported assaults on more than ten occasions.
  • Another study found that only 5% of reported crimes against people with disabilities were prosecuted, compared to 70% for serious crimes committed against people with no disabilities.
  • Women with disabilities are often perceived to be weak, unwanted or asexual, making us more vulnerable to sexual violence.
  • Some attackers have stated that they considered it a “favor” to rape and/or sexually assault women and girls with disabilities because they thought no one else would have sex with us, that we could not have sex otherwise, or they didn’t even view us as human beings.
  • Abuse has a more severe negative effect on the self-esteem of women with physical disabilities than those without disabilities.
  • Many women with disabilities have fewer economic resources, thereby increasing the risk of abuse.
  • Women with disabilities face limited options for escaping abusive situations and accessing battered women’s programs.
  • Women with disabilities are women too. Our voices, our thoughts, our bodies, and our lives matter.

I could keep continuing to list facts for you, but I’d be here all night. No, I’d be here for years. The point is that women with disabilities are women. We are human. We are sexual beings. And we are experiencing domestic violence and sexual assault and we’re experiencing it at much higher rates than any other population.

But nobody is talking about us. Nobody is talking with us.

Problems don’t get fixed if nobody knows the problem exists. By not taking a stand against the violence that women with disabilities face, we are essentially ignoring it.

No, we’re doing more than ignoring it. We are endorsing it.

When women without disabilities don’t step up to talk about and try to stop the abuse that women with disabilities face, they are endorsing that abuse. Just like when men don’t step up to talk about and try to stop rape culture, they are endorsing rape culture.

Just like rape and domestic violence isn’t a women’s problem, rape and domestic violence against women with disabilities isn’t just a problem for women with disabilities. These are both societal problems. Society needs to fix them. Men and women – with and without disabilities – need to work together on these issues.

So let’s start talking about domestic violence and sexual assault against women with disabilities because #yesallwomen includes women with disabilities.

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 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!

Women and Virtual Spaces

This article was originally posted on Yahoo! Accessibility.

What kind of virtual world do women inhabit, and what are the implications of their increasingly diverse online activities? This is a difficult question to answer, because there is no singular “virtual world.” The Internet is a tool for people to create communities of their own, not one unitary community. While there are a lot of very big and open common spaces, it is also entirely possible to create a fairly insular community online where the participants work together to create whatever kind of virtual space they want to (Youngs). This is particularly beneficial for marginalized groups, such as women and people with disabilities (Herring et al.), who can create spaces in which a shared experience can lead to building identity and a sense of empowerment from being able to work through barriers with others who understand.

In many (maybe even most) virtual spaces, there is still quite a bit of hostility towards women and women’s issues. Discussion of women’s issues seems to draw trolling behavior (Herring et al.). When gender equality is discussed in many online spaces, it is met with disbelief and resistance, particularly in the context of developed, industrialized nations. There seems to be a general response of, “What are you whining about? You ‘feminist types’ have ruined everything.” Doubly so when you consider disability issues on top of that, as our whole group is often judged by people who don’t know us to be a leech on society, rather than considered as valuable individuals who are full members of society. This hostility, often termed ableism, is never easy to see, let alone overcome, particularly for those who are not entirely sure where they stand.

However, many women have managed to carve out relatively safe spaces in which to build community and discuss issues that are important to them, using a combination of traditional community-building practices learned from offline spaces and thoughtful use of new online opportunities and moderation tools. The implications of the spaces that are being built by women and allies are at once amazing and needed, but also highlight progress that needs to be made. Online communities have taken spaces for woman-identified people from the relatively small, hidden, local community-dependent places of the 1960s and 1970s (which Tracey L. M. Kennedy calls “consciousness-raising groups”) to a medium that reaches out internationally to where people are in order to find truly like-minded individuals to form a community with (or “feminist virtual consciousness-raising”) (Youngs). Finally, all of those issues that women have really wanted to discuss with other people for so many years are being discussed in a relatively welcoming environment.

Potential Complications

However, the ability to find people who do very much agree with you has also sometimes led to online communities and blogs being solipsistic, extremely insular and exclusionary – creating an “echo chamber” effect. Miller and Shepherd describe this as a sort of “intensification of the self” wherein identities become highly internally mediated and focused on their chosen goal or acceptance by a group. They can become something like a cult of personality wherein you are not welcome if you have different ideas, even if your desires and goals are very similar. This practice is somewhat understandable considering many people crave commonality in which to “share stories” and explore self-expression, but it may not lead to real change in the world in any direct sense (Miller and ShepherdKennedyYoungs). Also, inclusion is not easy for anyone. The Internet allows for a great deal of diversity, which can be overwhelming. It takes a great deal of consciousness, outreach and intention to be welcoming to a broad range of people, even just within the women’s community.

Conclusion

This concept of forming women-centered virtual spaces has even been formalized by organizations like BlogHer, which brings together women who blog about a wide variety of topics together at conferences every year to network, built projects, and work towards common goals. They also have a website where blog feeds of all members are integrated with networking and community tools.  Our own organization, GimpGirl, allows for women with disabilities to connect for mutual support and networking. There are also several organizations that support women in traditionally male-dominated technology fields, such as The Anita Borg Institute which focuses on connecting women in computer science through their numerous initiatives such as a yearly conference and discussion lists.

Thankfully, these virtual spaces also provide many opportunities for inclusion and outreach if the effort is made, as well as an amazing opportunity for surprisingly intimate dialogue and content friendly to women (KennedyTobias). You can network with an endless variety of people that have similar or parallel goals, and work together with them to reach larger audiences.

Know of other women-centered communities or have something to say? Feel free to comment below!

 

Sources:

Herring, Susan et al. Searching for Safety Online: Managing “Trolling” in a Feminist Forum. The Information Society, 18:371-384. 2002.

The Internet, Disability and Artistic Expression

This article was originally posted on Yahoo! Accessibility.

Feminist Art Movement

The world of art, particularly art displayed in larger professional art galleries, has long been the domain of white men. Well-known artists throughout history are almost all white men, and depictions of women are often passive and sensual rather than involved in her surroundings. The images are of women as seen through the eyes of men, rather than how they see themselves (Whitehead, 1999; Brand, 2006).

The Guerrilla Girls, a group of women who work to get women and minorities represented as artists, called the Metropolitan out for their biased representation where 97% of the work displayed was done by men, and 83% of the nude work displayed was of naked women – asking “Do Women Need to Be Naked To Get into The Met?” (Brand, 2006). Out of frustration for the lack of representation of personal experience, women started the feminist art movement in the 1970s both to get their artistic expressions seen, and also as a form of activist response to mainstream art.

Art Online

With the ever-growing popularity of the Internet, women are able to connect with other people who understand their frustrations, as well as put their own artistic expression in very public spaces. Self-expression made public can convey a great deal of meaning for the artist – especially for marginalized groups. Art is often about feeling (even more so for women, who often experience art with both sides of their brain), and for many marginalized groups, those feelings go unnoticed (BBC, 2009).

The Internet provides a medium for art that previously would previously have never seen the light of day. Artists can have their own website to represent their work, as can physical art galleries that house pieces of art that can be later viewed in person. Additionally, performance artist groups can share videos of their work, both vastly increasing who they can reach and providing a way of growing interest in their theater performances. Writers can create blogs and self-publish their work online. They can also spread the word about published pieces and talk to members of the target audience. Community can be built around art in broader ways that transcend what was previously experienced by localized art communities.

Women with Disabilities

Female artists with disabilities are no exception. As a marginalized group, they struggle with representation in the larger art world. However, in the later half of the 20th century, the disability rights movement also fostered the creation of an entire genre of art (Disability Art) that explores the experience of living with a disability (Barnes, 2008). Many modern female artists with disabilities cite both the disability rights and feminist movements as dominant inspirations in their work.

Here is just a small list of amazing women (mostly from the U.S.) who at least in part benefit from the use the Internet to spread the impact of their work: Petra Kuppers, performance artist and founder of The Olimpias project; Ju Gosling, multimedia storyteller and performance artist; Cheryl Marie Wade, writer and performer; Laura Hershey, writer and poet; Anne Finger, author; Victoria Ann Lewis, performer and writer; Riva Lehrer, painter and writer; Sunaura (Sunny) Taylor, painter; Veronica Elsea, composer and musician; Carrie Sandahl, performer and head of the UIC Program on Disability Art, Culture, and Humanities; and many of the AXIS Dance Company dancers. This is nowhere near an exhaustive list. Know of others (especially outside the U.S)? Comment below and share them!

There are also several websites and organizations that support the work of artists with disabilities online (such as VSANational Institute of Art and DisabilitiesNational Arts and Disability CenterDisability Art and Culture Project, and one page mentions like The Amazing Art of Disabled Artists, among others). Know of other organizations or collections (especially outside the U.S)? Again, comment below and share them with others!

GimpGirl Community supports female artists with disabilities through our virtual art gallery (see pictures below). On our Second Life parcel, a co-created space, we have an art gallery to showcase the artwork of our members, who are often marginalized as women, disabled, poor, minority, etc. Their works convey a great deal of feeling – physical pain, heartache, frustration, joy, power, friendship, and knowing.

For many of the artists, these pictures had never been seen by anyone outside of their family or roommates. When they put them in our gallery, other women who experience similar feelings had immediate connections with what the feeling was. The artist was there, being real and vulnerable and connecting with other people who understood. It is an incredibly powerful thing, to feel that connection over something you never thought you would share with anyone. Technology allows people to come together in this way, supporting expression, healing and connection.

Sources:

Barnes, C. (2008). Behinderung und Dritte Welt (Journal for Disability and International Development). 19 Jargang, Ausgabe 1. 4 -13.

Brand, P. (2006). Feminist Art Epistemologies: Understanding Feminist Art. Hypatia, 21:3.

Original Cyborgs: Disability and Technology on Yahoo Accessibility

This article was originally posted on Yahoo! Accessibility.

The Exploration of the Cyborg

Unless you are a feminist, geek or academic, you have likely not come across the Cyborg Manifesto. It was written back in 1985 as an exploration of how the boundaries between human, animal and machine are blurring, as well as the implications of that breakdown of barriers (particularly in regards to feminist theory). Dr. Donna Haraway was one of the first academics to really comment on the vast diversity there is within the feminist community. She points out:

Sandoval emphasizes the lack of any essential criterion for identifying who is a woman of colour. She notes that the definition of the group has been by conscious appropriation of negation. For example, a Chicana or US black woman has not been able to speak as a woman or as a black person or as a Chicano. Thus, she was at the bottom of a cascade of negative identities, left out of even the privileged oppressed authorial categories called ‘women and blacks’, who claimed to make the important revolutions. The category ‘woman’ negated all non-white women; ‘black’ negated all non-black people, as well as all black women. But there was also no ‘she’, no singularity, but a sea of differences among US women who have affirmed their historical identity as US women of colour. This identity marks out a self-consciously constructed space that cannot affirm the capacity to act on the basis of natural identification, but only on the basis of conscious coalition, of affinity, of political kinship. …

She talks about how class and race affect the experience of being a woman, as well as how it can negatively affect the woman’s ability to participate in the larger feminist discourse. Amber Case further explains the traditional definition of a cyborg as “an organism ‘to which exogenous components have been added for the purpose of adapting to new environments’” (from a 1960 paper on space travel). While reading this and other papers that have attempted to extrapolate further on “the cyborg myth” it often strikes me that they are missing a really obvious connection when discussing various intersections; many people with disabilities have been cyborgs (under Dr. Haraway’s definition) since long before “technology” or the concept of a cyborg was even a popular discussion. There is some rare exceptions, such as this piece on Frida Kahlo and a brief mention in the Cyborg Manifesto itself (as pointed out by Theresa Senft):

Here, she makes what is her only real reference to prosthetics and disability in her entire essay, in a discussion of Anne McCaffrey’s 1969 novel, The Ship Who Sang. The novel death a severely handicapped [sic] girl whose brain was connected to complex machinery, in which machines serve as “prosthetic devices, intimate components, friendly selves.” Haraway wonders aloud, “Why should our bodies end at the skin, or include at best other beings encapsulated by skin?”

Indeed, those of us with disabilities and chronic health issues would be hard pressed to separate ourselves from technology. Our lives are intrinsically linked with technology, and our identity is often defined by it.

Disability and Technology

I will use myself as a working example to further comment on. I am writing this article on my laptop, using speech to text technology (Dragon Dictate) to type my thoughts for me while I talk to my computer. I’m sitting upright in my adjustable hospital-style bed, supported by an almost entirely metal spine that was implanted to keep my spine from collapsing. My laptop is on a rolling metal table to keep it from putting pressure on my legs. I am literally surrounded by technology to lift me out of bed, help me do necessary personal activities, and to help me take part in my household as a wife and individual. When I leave this house, you see me in my power wheelchair, or perhaps using my adapted minivan or the ramp on the light rail. I am alive because medical technology was developed to treat blood clots. I exist because I have an almost symbiotic relationship with technology.

Obviously everyone is different and has different experiences. I have a fairly severe physical disability, but many people with various disabilities and chronic health issues have long had this type of relationship with technology (medical, adaptive, etc.). Some people with disabilities also have deep relationships with animals, through using guide dogs and other types of assistance animals that are integral to their lives. In many westernized parts of the world, one could almost say that this level of relationship with technology is part of being defined as someone with a disability. It allows us to exist, and to be independent and integrated (for some value of) into society. At the same time, it is also a primary identifier for why we are seen as different.

The EDGElab at Ryerson University is researching the design and use of adaptive technologies made from common materials, mostly cardboard. A study conducted by Alison Gaston (2011) focused on the creation of a ‘corner chair’ that allowed the child to be free from a medical device and being held by a parent, to allow her to play in the sand (Henderson, 2011). The goal was to increase the child’s autonomy, in the hopes that other children would ‘play’ with the child, rather than, as had been the case up to this point, their ignoring the child or seeing her as an infant. With the introduction of the cardboard chair, the child was almost immediately accepted into the peer group. The other children adapted their own play to include the child despite her severe disabilities when the technology she used was replaced.

There is evidence of various types of adaptive technology back as far as the sixth century, if we take the wheelchair as an easy example. Likely, they were primarily used by nobility and upper-class until at least the 19th or 20th centuries. It’s hard to know, though, because documenting the lives of people with disabilities was rarely a priority in history, except in purely medical terms, and until more recently society hid us away in institutions or rooms only family visited. Technology was often developed on a case-by-case basis (as most technology was until closer to the Industrial Revolution) by family members or friends who wanted to create something they thought would help. Adaptive technology is still not as highly available in impoverished parts of the world.

Conclusion

Yet, when we think of deep integration with technology, disability is rarely thought of unless it is a direct focus. There are technologies being developed such as wheelchairs that are controlled by thoughtrobotic exoskeletons being developed primarily for people with spinal cord injuries to allow them to walk, and stair climbing wheelchairs. They are still clunky and imprecise (or ridiculously expensive and not covered by insurance), but perhaps indicative of future adaptive technology. The “cyborg chic” technologies such as “Skinput” style keyboards and wearable computer technology often are not accessible or designed with an eye to Universal Design concepts.

Even though I, and many other women with disabilities, have often been nicknamed and thought of ourselves as “The Bionic Woman,” we are rarely asked how this integration of personhood and technology affects us (for better or worse). Perhaps a wider integration – a further movement toward the cyborg – will make our relationship with technology seem less different, less alien. Perhaps it is a move towards a “singularity” where people will see past the integration with technology to the person beneath it.

To some degree, the Internet has already achieved that singularity, making us without physical body or gender unless we share those identities. It has some ability to normalize differences and facilitate human connection without preconceived notions or judgment based on appearances. It has also brought together far-flung communities in “conscious coalitions” where people who live at the intersection of feminism and race/class/ability can co-create common identities and social movements. It will be interesting to see how the definitions of different, human, disabled and woman develop as we inevitably move towards a deeper integration with technology.

– Jennifer Cole, Director

 

Sources:

Gaston, Alison (2011). Using Adaptive Designs to Promote Social Interaction. Inclusive Early Learning Environment: One Child’s Story.