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

Accessibility and Online Communities

This article was originally posted on Yahoo! Accessibility.

Online Communities

What are social networks? Most people are familiar with websites like MySpace, Facebook, and Twitter, but there are many others. These are places where communities are created by sharing photos, links, videos, and text-based status updates.

Although social networking sites have constant updates, there are still fundamentally a static experience. People who look for real-time interaction often explore virtual worlds. These are animated three-dimensional environments created with Computer-generated Imagery (CGI) and other rendering software. Users interact with the world and other users through their avatars, graphical representations of themselves that they can create and modify. Virtual worlds can be accessed through a web browser, or more commonly, a program is downloaded to the user’s computer that allows access.

Virtual Worlds

You may be familiar with World of Warcraft, which is a popular Massively Multiplayer Online Role-Playing Game (MMORPG); virtual world where users play a game together. There is a growing list of virtual worlds out there. Second Life is currently the largest virtual world that is not specifically a role-playing game. It is a varied virtual community, in which real-world companies (like IBM) and even universities (like Harvard) participate.

Universal Design

Universal Design extends the notion of accessibility to include design that is useful to people with and without disabilities. It was introduced by a team whose leader, Ron Mace, is a disabled architect. While the ideal physical world is accessible to everyone; universal design also applies to the Internet and online communities.

“Universal design seeks to encourage attractive, marketable products that are more usable by everyone. It is design for the built environment and consumer products for a very broad definition of user.”

– Ron Mace

Virtual worlds, i.e. Second Life, have made specific efforts to improve accessibility for people with certain kinds of disabilities. For example, users with low vision can use a “guide dog” to identify nearby avatars and objects, screen readers read text chat aloud, or screen magnifiers make the text large enough to read.

Second life virtual guide dog

People with mobility issues can find it difficult to navigate through a virtual world using only a mouse. More recent versions of virtual world software have incorporated alternate navigation controls, such as the ability to use keyboard commands. Environments are also becoming more compatible with voice recognition software, which is used by many people who have difficulty typing.

On a broader scale, people with disabilities in virtual worlds have used virtual worlds to show what accessibility should look like in real life communities. For example, installing wheelchair ramps in Second Life is an important first step to providing a welcoming environment for wheelchair using avatars, and to build awareness around the need for physical accessibility of buildings in real life.

Our friends over at Virtual Helping Hands coordinate  Helen Keller Day, a popular annual event  dedicated to “exploring how and why to employ, educate, entertain, and engage everyone through virtual worlds.” It  brings together people with disabilities, businesses, nonprofits, and other organizations to discuss access as it relates to Second Life. There is much good work being done to address these concerns, but more work is needed to create truly accessible spaces.

Creating Access

The use of Universal Design to make virtual worlds more accessible to people with disabilities can also help other people. This is especially true for those with communication problems caused by language barriers, older computers, and even slow typing skills. Universal Design also helps people who are unable to process a fast-moving visual environment; such as those with seizure disorders, chronic headaches, or other visual processing issues.

This is where social networking communities and virtual worlds can come together. Integrating social media into virtual worlds and building strong cross-platform communities that distribute information is essential. While not every site or community will be accessible to everyone, good community leaders have to meet their audience on different platforms and be flexible; providing options for people to participate in their communities. People learn to use technology in ways which they can understand and comfortable with.

Even in a graphic-heavy virtual world like Second Life, some groups have found ways to include people who can’t or choose not to enter the environment. For example, some groups make use of an IRC relay during meetings, which transmits text chat from Second Life into an accessible text-based chat room.

Who Benefits?

Why is access to online communities so important? There is a huge population of people seeking personal support to overcome roadblocks in their life. They may not have access to these support resources offline.

The GimpGirl Community often sees women with disabilities, fresh out of a rehab hospital after a spinal cord injury, looking to connect with others to explore this whole new world of having a disability; an experience that causes most people to completely rework their personal identities.

Sometimes these women share the cause of their injury and sometimes they don’t, depending on what they are comfortable with. One young woman eventually trusted us enough to disclose that she  was injured because her boyfriend lost control of the car while trying to beat her. Sadly, this  didn’t surprise us, as “[p]hysical assault by someone known to the victim is a leading cause of injury to women. Nearly two million women are assaulted each year in the United States, and more than half of women will be physically assaulted during their lifetime. …” according to the Illinois Department of Public Health.

Her family had abandoned her after choosing to stay with her boyfriend, even though she had been trying to leave him since the accident. Her relationship with this violent young man literally left her with no support through this major upheaval in her life. Many women’s shelters are not accessible, though this is slowly changing. The relatively anonymity of online communities allowed her to share her experience with others who knew what she was going through; people who had not been burned by her personal decisions. It helped her gain strength and develop strategies for the long battle she faced.

Her story, unfortunately, is an all too common one. Many women come to us facing abuse, food insecurity, and homelessness. They need emotional support and commonality, along with help researching what community services are available to help them.

Others who benefit are students in learning environments, and people seeking information or support. This makes universal design of access to information and community good for everyone, not just people with disabilities.

SLCC 2010

Come join GimpGirl Community at the Second Life Community Convention in person or online! Katherine Mancuso (SL: Muse Carmona) will be representing GimpGirl Community in the following SLCC 2010 events:

GimpGirl: Weaving a Virtual Support Network for Women With Disabilities
Saturday, 6:30 to 7:30am Pacific – Thoreau
UStream Channel: http://www.ustream.tv/channel/slcc6

GimpGirl’s mission is to connect women with disabilities through social technologies to support each other’s lives. We believe the lessons we have learned about how universal design and accessibility apply to facilitating conversations about healthcare and support across platforms are translatable to other community building, education, and collaboration efforts in Second Life.

Virtual Worlds Standards: Why You Should Care
David Levine (SL: Zha Ewry), Katherine Mancuso (SL: Muse Carmona), Jeanne Spellman (SL: Jeanne Solo)
Sunday, 8:00 to 9:00am Pacific – St. James
UStream Channel: http://www.ustream.tv/channel/slcc2/

As virtual worlds evolve, standards will be part of the dialogue shaping the growth of their technical architectures and social ecosystems. Topics will include: standards for Second Life-Like worlds, compatibility with existing Internet technologies, accessibility for persons with disabilities, and standards for meshes and graphics.

Utilizing Virtual Worlds for Real Life Good
Joyce Bettencourt (SL: Rhiannon Chatnoir), Henry Allen (SL: Jaywick Forcella), Kathey Fatica (SL: Katydid Something), Katherine Mancuso (SL: Muse Carmona), Janyth Ussery (SL: Saxet Uralia)
Sunday, 11:30am to 12:30pm Pacific – St. James
UStream Channel: http://www.ustream.tv/channel/slcc2/

Can a virtual world manifest real life good? This presentation will be an overview and panel discussion of best practices and learned experiences of five people working formally and informally on social good, nonprofit and philanthropic projects within Second Life. Topics such as using virtual simulation for support and awareness, fundraising, community outreach, and event planning along with the opportunity to askquestions, and pick the collective brains of the panelists.

All events can be viewed from Second Life at the SLCC sim (SLurl: http://maps.secondlife.com/secondlife/SLCC%201/233/24/25 ) in the room listed, or on the Ustream address in each event listing above!

GimpGirl Community at 2009 IEEE Accessing the Future Conference in Boston

 

We pleased to share that GimpGirl Community Liaison Katherine Mancuso will be presenting on our behalf at the 2009 IEEE Accessing the Future Conference, which takes place in Boston, MA from July 20-21.

You can also read the PDF of the abstract. Are you attending IEEE? Say hello! What are your thoughts on accessible community in virtual worlds? Let us know…