Meeting Change

After much consideration, we will be shifting from having meetings once a week to having meetings once a month. This Sunday, 1st March will be the first monthly meeting. Generally, we intend to have regular meetings the first Sunday of every month. We encourage everyone to subscribe to our Google calendar to keep up with events. We did not take this decision lightly, and we will continue to review all the technology that is utilized or could be utilized as we move forward.

We would like members to know that you are welcome to use our Second Life and IRC chat room space for informal meetings anytime. Other members have showed an interest in continuing to meet every Sunday at 1 PM Pacific informally, so we encourage all members to continue dropping in during this time for casual conversation.

Sincerely,

GimpGirl Staff

Holiday Break

Seasons Greetings!

We would like to let everyone know we will be taking a break over the holidays. The meetings on December 21, December 28, and January 4 are canceled. Our support meetings will start again in the new year on January 11, 2015. We look forward to catching up with everyone again then. In the meantime, you can still stay in touch on our Facebook group and on Twitter.

We’d like to take the opportunity to thank everyone who has supported us the past year, all our members and friends of GimpGirl. We are very proud of our community.

We’d now like to ask you, what is your highlight from 2014? What achievements are you most proud of? Do you have any new year resolutions for 2015? Let us know in the comments below!

Going to College with a Disability

 

by Eva Sweeney, Hannah Langlie, Julie McGinnity and GimpGirl Community

Transitioning from adolescence to college (or university) life is scary at times for most students. However, being a college student with a disability definitely comes with its own unique challenges. This article explores many of the common pitfalls experienced by students, and how individuals successfully addressed these barriers.

Although high schools in some countries (such as the United States) are required to assist young adults with disabilities transitioning to a successful adulthood, many of these programs aren’t designed for a transition to college. These programs are often built around the false assumptions that disabled students are not going to attend college, or have aspirations beyond menial jobs and living at home (or in a group home). These programs are also staffed by adult, able-bodied professionals who do not have first-hand experience with living as a disabled person, and role models who have experience are rarely introduced.

As a high school student, these well-meaning programs can be a tremendously disempowering experience. Individual needs can get lost in a sea of bureaucracy and paperwork, and are often not addressed in meaningful ways. The system is not designed to give students all the tools needed to take charge of their lives and truly live independently.

Not surprisingly, in the United States only 53% of students with disabilities have completed a degree or vocational program, as opposed to 64% of their nondisabled peers (Cole, pg. 2). Students with disabilities don’t finish for many reasons, including lack of educational programs, not having access to funding, problems with coordinating support services like personal care attendants (PCAs) and medical care, unexpected medical complications, geographical access barriers like snow or long commutes, and physical access barriers like inaccessible classrooms or student housing.

We have put together a list of helpful tips for navigating the confusing landscape of college life. These tips are taken from our own experiences, as women with various disabilities, and should in no way be taken to represent all access needs. Eva attended a small, liberal arts college in Los Angeles. She uses a wheelchair to get around and speaks with a letter board since she is non-verbal. Hannah is currently a third-year college student in Seattle studying journalism. She uses a power chair most of the time and lives on campus. Julie is a master’s degree student studying music, and utilizes Braille and readers.

Balancing Academics and Practical Needs

Managing practical needs (such as personal care or navigating between classes) is critical to succeeding in college, so it is important to know what supports and accommodations are available. It is important to remember that every situation is a little different, depending on your personal needs and the college you choose. The quotes below relate each of our personal experiences.

Coordinating Disability Services

The vast majority of post-secondary schools (in the United States and other countries) have a disability services office that is suppose to coordinate all of the support services and accommodations needed by students to be successful. However, the responsiveness of the staff and quality of the services provided in each disability services office varies widely. We had very different experiences:

“My college’s disability services person was god awful. All my professors trusted me, so when I needed more time for tests, I just took the test in the cafeteria. I also couldn’t stay in the same room since my aide voiced what I’d be spelling out on my letter board and therefore, giving everyone my answers. My professors knew I wouldn’t cheat or copy the test for others. When I was done, I would just drop it off in their office. If I had used disability services, it would have been tons of unnecessary paperwork and time for each test. When I started each semester, I would email my professors and introduce myself. I would briefly explain cerebral palsy and that I would have an aide accompany me to class. I would also troubleshoot any potential issues. For example, my Human Anatomy class did a lot of work handling model bones. I can’t use my hands so instead, my professor would explain where certain bones are in my body. When I took painting, my professor was worried at first about how I would participate. But with an explanation and one or two classes, she quickly got it and I became one of her favorite students.” — Eva

“I choose to meet with each of my professors that I don’t already know before the quarter starts to go over my accommodations. Although I do use disability services, I don’t always use the accommodations for every class, I am able to customize them for what classes I need. Usually, a face-to-face meeting will help offset any anxiety that a professor might have. Because I use dictation software to write most of my papers and tests, I have a similar situation that I can’t be in the class with all of the other students, so sometimes I have to work this out, depending on what the test entails.” — Hannah

“I have always used disability services. Since I don’t have the time or energy to scan my books into accessible formats, I find them useful for this purpose. I have also worked with them to get Braille, which is very important to me. Since the college is obligated to pay for Braille, I prefer to go through them rather than trying to pay for it on my own. I try not to take tests through Disability Services though. It is much easier to arrange to take a test with a reader in a professor’s office or just take the test with the rest of the class.” — Julie

Continue Reading Going to College with a Disability

How GimpGirl Works

How do we function as an organization? People often ask about our somewhat unique way of getting things done. GimpGirl Community has been around for almost 16 years now, but because we often operate behind closed doors most people don’t understand how this community works from an “administrative” level.

We are a relatively well-known group in certain circles, and the prevailing stereotype of relatively well-known groups such as ours is that of a well-funded, corporate nonprofit with a full staff who often presumes to know more about the people they serve than the people themselves. I promise you we are none of those things.

Financial Survival

GimpGirl has never been — and never will be — a well-funded corporate nonprofit. We have never been the recipient of any grant, and we do not have a regular source of funding aside from occasional member donations that cover the cost of incidentals like travel and computer equipment. We have always relied on “in-kind” donations of services from supporters (mostly friends of those within our “staff” circle) and individual members. They donate technical services such as server maintenance and computer repair, and various professional services such as editing articles and consulting on the best way to create healthy environments. We also partner with other organizations on services like web servers in order to save money.

Aside from our beginnings as part of a very small nonprofit (which is now defunct), and a brief partnership with another very small nonprofit, we have never been independently registered as a nonprofit. One of the main benefits of being a registered nonprofit is the ability to apply for grants and various other funding. For some organizations, a reliable money stream is essential to carrying out services. However, going down that path also means that a large percentage of human resources must be redirected to continually seeking new and better funding sources.

The U.S. 501(c)(3) nonprofit corporate structure comes with legal requirements, as well as additional provisions required by funding sources – stipulations we are not willing to accept. As women with disabilities, our lives are often subject to the whims of medical and bureaucratic institutions. Our members sometimes deal with homelessness, neglect, abandonment in life-threatening situations, and physical, sexual and emotional abuse. The organizations and bureaucracies that are in place to deal with these situations are often not set up to handle disability needs. As a collective, we have the flexibility to help our members deal with these situations in ways that we would not be able to if we incorporated as a nonprofit.

Human Resources

Even though GimpGirl technically has an internal hierarchy, we often function more like a democratic collective. The hierarchy was established to create a structure to deal with potential conflicts, and to centralize individuals who have clearance to speak for our community and coordinate volunteer efforts. Because we are a community by and for women with disabilities, it is highly beneficial to have a flexible structure that allows individuals to contribute in a way that works for them. Our volunteers not only deal with the barriers that the bureaucracy around disability causes, but they also deal with the complications that many adults deal with – jobs, children, family, relationships.

There are times when we refer to the contributors as “staff,” but we have never paid anyone any amount of money to work for this community. All “staff” hours are donated by individuals, including those who officially have titles such as myself. Our core volunteers also often collaborate with other organizations on projects related to women with disabilities and technology, but they generally do not receive monetary compensation for their efforts even when the project is funded. Volunteers are invited to conferences around the world to represent our community and to talk about the issues we confront, and when we are lucky the organizers pay for travel and accommodations. We are all volunteers working towards a common goal – not because we are paid, but because we are passionate.

Member Participation

The real magic in what we do happens when we bring members together. The women with disabilities that facilitate and participate in this community work together to create the space that makes everything that we do possible. Many members have never had the opportunity to talk to other women with disabilities because of barriers or a lack of people in the local community. A kind of natural co-mentorship forms when you bring people together who understand the lived experience of each other. Our members come from all over the world, and represent a wide variety of different backgrounds and levels of experience. They also have a wide range of disabilities.

Young students come to us struggling with the complications that come with being successful in college to speak to older professionals who have been where they are. Individuals in abusive situations at home come to us to speak with women who have made the transition to their own environment. Women who are pregnant come to speak with other mothers who understand how society treats mothers with disabilities. People simply wondering how to get from here to there to accomplish something they want to accomplish come to ask about accessible transportation. We all have some story or learned lesson that we can share that is meaningful to others.

Involving a wide range of women with disabilities also helps ensure that our community stays accessible to a wide range of people. Our contributors strive to create online spaces that are inclusive to all of our members, because our members make us who we are. Additionally, contributors are all people with disabilities who have their own needs. Instead of thinking about accessibility as a vague idea or a checklist, we think about accessibility as a constantly evolving collective responsibility to work together to make sure everyone can participate. We are successful because we work together with inclusivity in mind from the beginning.

Other Resources

If you have access to an academic library and would like more information about how this community functions, please check out our article in New Media and Society entitled GimpGirl grows up: Women with disabilities rethinking, redefining, and reclaiming community. Everyone can access additional information about this community on this website under the About Us tab, as well as in the numerous articles found here.

Community Liaison Katherine Mancuso and I will also be discussing how our community works today — January 27, 2014 at 6pm Pacific — at the online event Leading Accessible Online Communities. It is open to everyone!

 

— Jennifer Cole, Director, GimpGirl Community

 

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!

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.