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

Social vs Medical Model Evolved

This article was originally posted on Yahoo! Accessibility.

Models Of Disability

Disability activists and advocates have been trying to frame disability and surrounding issues using a social model of disability since at least the 1980s in an effort to distance discourse from the (still) predominant medical model that rules many of our lives. This switch in models was to frame disability in a way that made it clear where many people face barriers and how those barriers can be addressed. However, the vast majority of people have still never heard these terms or understand the implications of these thought frameworks. Of those who have, even within the disability community, there is a sense of division between those who embrace the social model and those who don’t feel it is an accurate description of their reality. So, what are these models and how can we bridge the gap?

Medical Model

The medical model of disability focuses on the impairment (physical/health/mental/etc.) as a person’s barrier to a “normal” level of functioning in their daily lives and in society. This model focuses on curing the cause of the impairment or correcting that impairment through use of equipment, medication, etc. in order to enhance the individual’s quality of life. This has long been the most commonly used model by the medical field, as well as many other organizations. It is by far the one that most people are familiar with and are used to working within. (For more information, see the table below.)

Social Model

The social model of disability focuses on a broader view of the existence of barriers as mainly stemming from a social construct of disability by society in general. In this model, people with disabilities would largely have no barriers if people took into consideration the vast diversity that exists within humans. If we did not use stairs in architecture, people in wheelchairs would no longer have the barrier (and the same could be true for someone pushing a stroller or a dolly stacked with heavy boxes). If government and society supported adequate support services such as funding for caregivers and medical coverage, our individual impairments would no longer be a barrier to engaging in society and our lives. This model has roots back to the 1960s civil rights movement, but has been largely used by disability activists since at least the 1980s. (For more information, see the table below.)

After reviewing the definitions of these two models on the Spina Bifida Support website (see definitions), our community members began a discussion on how they felt about these models and how it applied to their lives. The following is one outcome of that discussion: Ricky Buchanan’s opinion on how these models could be integrated to more accurately describe her experience. Many other members felt this perspective was worth sharing.

The Integrated Model: An Individual’s Perspective (section by Ricky Buchanan)

There is no denying that the creation of the social model of disability has helped a lot for changing/raising disability awareness in the past. At the time we needed a polar opposite to persuade people to move away from the purely medical definition of disability. However I believe its job is done (to the extent it can be done) and we can now most usefully look at models which integrate the best and most relevant aspects of both the social and medical models.

I see the social model and the medical model of disability as ends of a spectrum – the medical model pretty much said “everything about disability is intrinsically negative” and the social model contradicted that with “nothing about disability is intrinsically negative”. I think that the truth, as usual, is somewhere between the two extremes – as a person with a disability, I do believe that some things about my disability are intrinsically negative to me and no amount of environmental adjustment will help with them. I find that things like pain and excessive fatigue come under that category – these things affect me even when I am not doing anything at all and it is very hard to find any environmental changes that help with them.

So although I believe in the social model as a whole, some aspects of my disability really do fit best under a medical model. I believe very strongly that each individual must decide for themselves which aspects, if any, of their self they would prefer to view under that medical model.

MEDICAL MODEL SOCIAL MODEL INTEGRATED MODEL
Disability is a deficiency or abnormality. Disability is a difference. Disability is a difference.
Being disabled is negative. Being disabled, in itself, is neutral. Being disabled, in itself, is neutral. Specific attributes of a disability may be viewed as negative by the vast majority of people who deal with them (e.g. pain, fatigue, depression) but this distinction can only be made by those living with the attributes.
Disability resides in the individual. Disability derives from interaction between the individual and society. Disability derives primarily from interaction between the individual and society but also from negative attributes of disability present within the individual.
The remedy for disability-related problems is cure or normalization of the individual. The remedy for disability related problems are a change in the interaction between the individual and society. The remedies for disability related problems include (a) a change in the interaction between the individual and society, (b) neutralizing or ameliorating negative attributes as far as possible.
The agent of remedy is the professional. The agent of remedy can be the individual, an advocate, or anyone who affects the arrangements between the individual and society. The agent of remedy can be the individual, an advocate, a professional, or anyone who affects the arrangements between the individual and society or who is able to neutralize or ameliorate negative attributes of disability.

Origins of an Integrated Model

This concept of integrating models of disability is hardly new, but most of this work seems to have been done by academics in various fields, and has unfortunately not trickled down to individuals even within the disabled community.

Carol Thomas, a professor/writer in the UK who specializes in disability studies and sociology of health and illness, wrote about a “social relational model” that defines “disability” as a result of people with impairments being restricted by society from participating in an activity (2004). However she also mentions a concept that she calls “impairment effects.” For example, if an activity we wished to do had provisions in place to enable access for us, effects of our impairment, such as emotional and physical pain, still have the potential to prevent us from taking part in activity.

If this kind of social relational understanding of disability could be adhered to within disability studies, that is, if the commonplace view that disability equates with restrictions of activity could be broken away from, then there would be no need for futile and time-wasting disputes about whether or not impairment or chronic illness cause some restrictions of activity. We can say, ‘Yes, of course impairment causes some restrictions of activity—but these are not what is of interest in studying and combating disability’. Disability is a form of social oppression on a par with other forms of oppression in our society associated with gender, race, class, and sexuality. (Thomas, 2004)

Tom Shakespeare, a geneticist and sociologist from the University of Newcastle, and Nicholas Watson, from the University of Edinburgh, also write about using a “critical realism” framework to view barriers:

Experiential, impairment is salient to many. As disabled feminists have argued, impairment is part of our daily personal experience, and cannot be ignored in our social theory or our political strategy. Politically, if our analysis does not include impairment, disabled people may be reluctant to identify with the disability movement, and commentators may reject our arguments as being ‘idealistic’ and ungrounded. We are not just disabled people, we are also people with impairments, and to pretend otherwise is to ignore a major part of our biographies. (2002)

Shakespeare and Watson ask: “Where does impairment end and disability start? … Impairment is part of our daily personal experience, and cannot be ignored in our social theory or our political strategy.” (2002)

Conclusion

This debate is definitely not new, and has been at times contentious among those feverishly working to further disability rights and access. Often, those outside academic and activist circles are largely unaware of this debate. However, in order to come together to further disability rights and awareness, some believe we need to change the discourse.

What do you think? How can we take these models of disability and make them more accessible to the common person? How can we involve more people in affecting rights and access? Please comment below!

Sources:

Shakespeare, T. & Watson, N. (2002) The social model of disability: an outdated ideology? In: Research in social science and disability, volume 2, pp. 9–28.

Thomas, C (2004) How is disability understood? An examination of sociological approaches. In Disability & Society, Vol. 19, No. 6, October 2004 pp. 569-83. Taylor & Frances Ltd

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.

Privacy Issues Continued

This article was originally posted on Yahoo! Accessibility.

In our last post — Privacy, Women with Disabilities and Online Space — we discussed online privacy issues for women with disabilities, as well as some of the things we do to address them as a group. Though it is impossible to summarize all privacy issues people with disabilities face, our team thought it was important to look at privacy through a broader scope. Invasions of privacy are a constant and pervasive part of the experience of having a disability, for many people.

To recap our last post, most online privacy issues are related to creating identity. The Internet has some ability to “normalize” people with disabilities and allow them to disclose whatever information they want when they are ready. If someone is uncomfortable with their disability, they may have no need to disclose their disability online to have a place where they can be free of stigmas that may be difficult off-line. Conversely, if someone is totally comfortable with their disability, they can be totally upfront about it online in order to reach out to others in the disability community. People have different expectations of what privacy means online, but the ability to control what information is disclosed can be a powerful experience that many people with obvious disabilities ordinarily wouldn’t have the freedom to do. The same could be true of gender or any other identity. People can experiment with what they disclose online in ways that feel safe to them.

What we Missed in our Last Post About Privacy Online

Devotees

A big issue with privacy online we didn’t highlight in the previous post was devotees (people who fetishize disability or associated adaptive equipment such as wheelchairs or canes). There are different camps of thought about devotees in various online communities, though we as a group do not think it is healthy to expose our members to these individuals and do not welcome them in to our spaces. However you feel about them, they are very present and numerous online, particularly if you disclose that you are a woman with a disability. They friend you on Facebook on a daily basis. They frequent disability focused chat rooms. They visit disability spaces on Second Life. They ask inappropriate questions, make lewd comments, and generally treat you like a sexual object. It feels pretty creepy and dehumanizing to most women, and it is hard to escape. Many people develop defense mechanisms to deal with devotees, like asking leading questions when meeting new people online in order to get a better read on their intentions. Most devotees are pretty obvious about their goals. However, some of them are more subtle so can be harder to read, particularly as many people with disabilities are socialized to expect people they just meet to ask really personal questions that others might find rude as a conversation opener (which we go in to more later).

CAPTCHA

Additionally, some of the ways some companies provide accommodations for inaccessible websites can also violate privacy. Instead of offering accessibleCAPTCHAs (those scrambled letters and numbers you have to type in when creating an account) that people using screen readers can utilize, some companies require those users to call in to verify their account. Sadly, free, accessible options to use instead of CAPTCHAs are readily available.

A Larger Picture of Privacy Issues for People with Disabilities

The conference we took part in (PrivacyCampTO2) predominately focused on online privacy, so our conversation started there. People had a lot of feelings about that topic, but also had a ton of things to say about privacy for people with disabilities in general. Not surprisingly, as the very nature of disability can involve a lot of people in your personal space on a fairly regular basis. Caregivers handle your personal body. Medical professionals have you in all kinds of embarrassing, dehumanizing positions in those not quite big enough to cover your behind gowns. You may have to rely on others to help you read or otherwise access private or embarrassing information. (Try shopping for the right condoms on your own when you can’t read the package!) To some degree, most people just acclimate to the constant barrage of invasion of privacy. Particularly if you are raised with a disability, this can lead to both an altered expectation of privacy and a heightened appreciation for the precious little privacy you get.

Invisible or Hidden Disabilities

Even people with more invisible or hidden disabilities have fairly constant issues with privacy, on top of ones already mentioned. Because of stigma and fear of discrimination, some people with non-obvious disabilities may choose to not disclose their disability unless absolutely necessary. Knowledge of a disability can affect how professors treat you, how likely potential employers are to hire you, and how new friends view you before they get a chance to know you as a person. However, people often find full disclosure out of their control. Even simple gossip about someone’s disability can put that individual in the position of having private information made much more public than they intended.

Random Strangers

For reasons we will not speculate on, random strangers that people with disabilities encounter often feel it is their right to immediately know really personal information like diagnoses, health status, and any host of other information. Most people will answer to be polite, but think about it: do you normally go up to strangers and start off a conversation with asking highly personal questions? Pregnant women often report this same experience with unknown people invading their personal space (touching their belly, etc.), asking really personal health questions, and assuming what emotional space they are in. It is a common experience of many people with disabilities for the entirety of their life (or disability if it is not life-long).

Caregivers

Unfortunately, that same lack of privacy can often extend to known people as well. Most people report experiences of an extreme lack of autonomy when dealing with caregivers and parents (of children over 18 in particular). Many people have probably experienced trying to get a little private time with that special someone as a teenager, but people with disabilities often stay with their parents longer than others might for practical concerns related to independence. When you add caregivers and nurses to the mix, it can be really difficult to get the privacy needed to explore your very normal sexuality. One person even reported that his nurse was keeping logs of when his girlfriend visited to show to his parents (even though he is an adult), and that the nurse kept barging in to his room despite being asked to wait in the other room. They eventually just locked her out and called her supervisor. This is an unfortunately common tale.

Even if caregivers are respectful, the very nature of the relationship requires a great lack of privacy. That person often knows every intimate detail of your life, like it or not. They often know financial information (though most keep that as private as possible), when you are on your period, how you vote and when you have sex. It requires a caregiver very dedicated to professionalism to keep that information to themselves. The information they aren’t required to meticulously log in your file, that is. Anyone with a government-funded caregiver has their life logged in great deal. How many times a day do you go to the bathroom? How long does it take you to go to the bathroom when you go? How long does menstrual care take you each month? These are standard questions you have to answer (both on forms and in an interview with a government employee) in order to qualify for caregiver and other government funding.

In the United States, some parts of HIPAA were intended to ensure patient privacy, which is a good goal. However, most people have not seen improvements in privacy in ways that are meaningful to them. Mostly, the largest outcome of it has seemed to be making the whole medical process even more complicated, as if the endless paperwork shuffling and constant checking in with a team of medical professionals wasn’t complicated enough.

Most importantly, we discussed that privacy means vastly different things to different people. Some want more, others less. Some know a lot about privacy, others don’t really care to know as much. There are, we are sure, many privacy issues that were not included here in this article. It is just too huge and varied an issue to fully cover in a couple of blog posts, and we would love to hear your thoughts and stories about privacy (below). People are individuals and there is no one experience that describes or represents everyone. The important thing is that people be allowed to control their own privacy in ways that work for them.

Do you have other examples of privacy issues that people with disabilities face? Comment on them below!

Privacy, Women with Disabilities and Online Space

This article was originally posted on Yahoo! Accessibility.

There is frequently discussion about privacy concerns online, but little discussion about the implications of how it impacts individual lives in both positive and problematic ways. As community organizers who work with and in vulnerable communities, privacy is a constant topic of conversation. To prepare for Privacy Camp, we discussed how privacy applies to our community and how it benefits our work in supporting the lives of women with disabilities. We outline the main points from the key questions raised below:

Why do women with disabilities need to have a private space?

Women with disabilities have unique issues–something we’ve written about before–and require a space that is private and “just us” in order to address them.  Women are socialized to be caregivers, and often do not speak up for their own needs in mixed spaces, even when around men who value gender equality. We think it’s important to have spaces private to certain identity groups where members can build commonality without outside pressures to help allow people to have pride in their identity in the rest of the world.

For example, one of these sensitive issues is abuse. We believe the lifetime abuse rate of our particular members is probably above 80%, though figuring out exact statistics in our community is difficult because we depend on self-reporting and never pressure people to disclose. Statistically speaking, a majority of the perpetrators of that abuse are male. We are not saying that all males are abusers in any way. Many of us have male partners or husbands that are an integral part of our lives. However, we need a safe, private place separate from potential pressures in order to process abuse and other sensitive issues. If a woman with a disability finds herself a victim of physical, sexual, or psychological abuse, having a safe, private space to share experiences with others who have had similar experiences can be empowering, and help break the cycle of violence.

Having a unique, private space also builds pride, identity and solidarity in being women. Women with disabilities (and likely any minority group) gain something by being open with other women with disabilities. In the public and more mixed-sex faces of GimpGirl, we’re able to amplify these positive feelings by highlighting achievements of women with disabilities and interface with our allies. Women often feel more empowered to make choices around their own bodies and feel beautiful and proud when they have a positive, accepting place to discuss sexual issues which may be uncomfortable to talk about in mixed-sex environments like menstruation and female masturbation (even for women who do not necessarily have sex with men).

So how do we create this kind of private & safe space using very public online tools?

We use accessible or adapted online tools to bring people together from around the world. Many of these tools, such as Facebook, have built-in privacy features, such as creating group spaces that require approval of a moderator to join, in order to control who is allowed at any particular meeting. Synchronous platforms, such as Second Life and IRC (Internet Relay Chat), also have tools to eject and ban visitors. One of the drawbacks of the anonymity of online spaces is that it is impossible to know exactly who we are allowing into our safe space even though we put a great deal of effort in to screening participants. However, moderator tools provided by the platforms help us take action against people who violate our code of conduct (which we clearly state must be followed at all meetings and on the website). We also worked with our community to write our code of conduct, so that there was a larger investment in following it, and will continue to update it as the community sees fit in order to guide behavior. All regular participants are aware of the rules because they help write and update them, so they act as additional enforcement of the boundaries.

What options allow people for masking their identity and protecting their privacy, even within our safe space?

So let’s start with what we DON’T allow people to mask. We have clear rules that are stated at every meeting and on our website of who is and isn’t welcome to meetings and on various platforms. We additionally either require every new member fill out an application form discussing their interest in women with disabilities, or we research their online identity (depending on the platform). This helps make sure people fit our basic rules–that they can personally identify with both women’s issues and disability issues in order to attend “closed” meetings.

However, we do not insist people tell us their real names or their diagnoses, where they live specifically, or any other information. We feel that that is something they can choose to disclose to us as they feel comfortable and as context allows. This is a trust issue. As long as they trust us enough to follow our rules and engage with us, we trust that they will open up at their own pace. Many people who are struggling do not want to divulge all of their information to random strangers on the Internet, particularly because people hear about horrible things that happen to people who give out personal information online. There is a certain amount of mutual trust that has to be built in a group such as ours.

Does allowing people to keep certain information private allow them to be more open?

Yes. Many people feel more comfortable talking online because they know that it is unlikely they will meet any of these people in their face-to-face life. In some communities where the tone is different, that encourages bullying, trolling and aggressiveness. In our community, where we work very hard to set a tone of mutual support through example, our code of conduct, and thoughtful facilitation, anonymity and the right to privacy has led to increased trust and openness.

When people are actively in extremely stressful situations and feeling vulnerable while facing major changes (such as adjusting to a disability), it can be really hard to talk about the intimate details of their lives to people who know them in person. Women with disabilities often feel that people around them cannot relate to these issues, and some feel that they would be ‘burdening’ them with their problems if they shared them. It may also be difficult to gain an objective viewpoint from those close to the situation, such as family and friends. Additionally, women with disabilities, especially those who require assistance with daily living, are compelled to share much of the intimate details of our lives with others (medical service providers, family members, caregivers) whether we’d like to or not.

A place where we retain control over disclosing the details of our lives can be really important to feeling dignity, empowerment, and agency around our personal information. Providing a level of anonymity and making allowances for privacy can enable women in our space to go much deeper into issues and share experiences, giving individuals the opportunity to gain peer support and advice to move forward and giving them the confidence to make positive progress in their lives.

Join in the conversation!

GimpGirl Community is hosting an event on March 19 at Privacy Camp in Toronto and online in Second Life and IRC. If you’re interested in discussing the issues we raise in this blog post further, please join us in the conversation.  More details to follow at http://www.gimpgirl.com.

We believe these tools and ideas are transferable to other communities that work with sensitive issues, and have given talks on how to transfer some of these ideas (see IEEE-IBM 2009 Presentation [click “more” for abstract]).