Category Archives: Publications

Balancing Relationships

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In our previous article, Caregivers and Relationships, we gave a very broad overview of managing paid caregivers1 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.

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Social vs Medical Model Evolved

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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?

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Caregivers and Relationships

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The most common question we hear from younger women with disabilities is how to manage paid caregivers (also called personal care attendants or carers) in the context of some type of relationship. Often this working relationship happens in the same home that family, housemates and romantic partners also live in. How do you maintain your close, personal relationships while managing a paid caregiver full or part time? Keep in mind the following observations are not from professionals, but collective perspective of a group of women with disabilities who have had a lot of personal experience balancing caregivers and relationships.

There have been several books written on this subject, but often the key to finding the answer is simple: You, the adult receiving caregiving services, are the boss that must manage your working relationship with your caregiver in a professional manner. We are not advocating you treat your caregiver poorly — far from it! A clear, pleasant, professional relationship will benefit you both in the long run.

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Read the entire article on Yahoo! Accessibility.

Women and Virtual Spaces

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

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

However, many women have managed to carve out relatively safe spaces in which to build community and discuss issues that are important to them, using a combination of traditional community-building practices learned from offline spaces and thoughtful use of new online opportunities and moderation tools. …

Read the entire article on Yahoo! Accessibility.

The Internet, Disability and Artistic Expression

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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. …

Read the entire article on Yahoo! Accessibility.

Original Cyborgs: Disability and Technology on Yahoo Accessibility

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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.

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Read the entire article on Yahoo! Accessibility.

Privacy Issues Continued

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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.

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Privacy, Women with Disabilities and Online Space

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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…

Read the entire article on Yahoo! Accessibility.

Social Media Makes Us “Less Human”?

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There has been a lot of interest on the Internet recently over MIT (Massachusetts Institute of Technology) professor Sherry Turkle’s new book Alone Together: Why We Expect More from Technology and Less from Each Other and her assertions about how technology, including social media, makes us “less human”: “we are changed as technology offers us substitutes for connecting with each other face-to-face” (Turkle 2011). So, what exactly is “human”? The Wikipedia entry for the term “human” points out that “…self-awareness, rationality, and sapience, are considered to be defining features…” As humans, sharing that essential human nature of commonality of our experience with people who understand our reality is necessary to maintain mental health. We are social creatures, after all. So, is it the essential nature of social media and technology that make us more disconnected, or is it how people choose to use these technologies?

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Read the entire article on Yahoo! Accessibility.

Accessibility and Online Communities

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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…

Read the entire article on Yahoo! Accessibility.