Caregivers and Relationships

This article was originally posted on Yahoo! Accessibility.

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.

However, it is important that you familiarize yourself with your rights and responsibilities both with your government and any other agencies that might be involved. Beyond rights and responsibilities, defining and enforcing the professional boundaries of your relationship with your caregiver is entirely up to you! Not your caregiver, parents (if over the local age of consent), partner, spouse, agency or housemate — you. Developing the skills to communicate with your caregiver will allow you to guide this working relationship.

The following sections build on each other. What is true for making one situation work is often still applicable for other situations. We recommend you read the entire article in order.

Friends and Housemates

Living in a home with unrelated housemates or friends is probably one of the easiest situations in which to manage the balance between managing paid caregivers and personal relationships. Generally, you and your housemate will have separate “households” (occupied space, and financial and other personal responsibilities) and shared spaces would be areas such as kitchens, laundry facilities, and bathrooms. You may also share a bedroom with separate beds, and this does add some privacy challenges (which we’ll address later on under “Spouses or Romantic Partners”).

In this situation, as long as your housemate knows that a caregiver will be present in the home, your main concern is going to be agreeing on a schedule for shared spaces that you can all stick to. This may seem too rigid for some, but tempers quickly flare when these shared resources are not available when needed. Imagine that you and your caregiver are working together to get you showered (a task that can take over an hour) and your housemate has 30 minutes to get out the door to work. You are probably going to have a pretty grumpy housemate on your hands who feels that he/she is being disrespected.

Schedules also need to be flexible at times. What if you have a hot date and need to wash your favorite outfit the day your housemate usually does her/his laundry? Just be sure to ask for a change as soon as you know one is needed. The same goes for your housemate too. Respect goes both ways!

You will both also need to agree on how shared resources are handled. Is food and laundry soap shared or separated? Whatever you agree on, be sure your caregiver is well informed and respects the boundaries you and your housemate have agreed to. If you do decide to separate resources, try labeling things to make it crystal clear what your caregiver can and can’t use. This will reduce stress on both your relationship with your housemate and your caregiver. Remember that, to your caregiver, your house is a foreign environment and no one has the ability to recall every single detail they are told. If mistakes still happen, ask your caregiver to check with you before using any product.

If any other concern comes up between your housemate and you, deal with it at the time and be sure to make the newly agreed upon boundaries clear to your caregiver as soon as possible (as well as any new caregiver you work with). Again, you will need to take control of managing your caregiver as their behavior and adherence to boundaries reflects upon you in the eyes of your housemate.

Family

What if you live with your family of origin? The following observations predominantly refer to adults receiving caregiving services as parents are still legally responsible for your care until the local age of consent (18 in the United States). Ideally, parents will encourage their children with disabilities to start taking over responsibility for managing caregivers after they reach at least age 15 so that the child is prepared for independence as an adult.

Some people with disabilities continue to live with their parents or siblings as adults, or circumstances force them to move back in to family homes some time later in life. This situation can often lead to conflicts that mainly stem from a lack of clarity about boundaries in your personal relationships with your family (on top of all the issues with housemates mentioned above).

When continuing to live with your family of origin past the age of consent, a major shift in the relationship should ideally happen when you reach the age of consent — you should start taking full responsibility for your services, finances, and life in general, and your parents should not only let you do so but encourage you to do so. In other words, you are now an adult and should both view yourself as one and others should view you as one as well.

This is a huge shift for parents who have raised you from birth and for you who has been their child for many years, and it often causes conflict that affects your ability to effectively manage your caregiver in a way that works for you. Also, you are still living in someone else’s house (unless your name is on the lease as well) and to some degree you still need to follow general rules that your family has set for their property or rented space. This does not mean that they have the right or responsibility to tell your caregiver what to do or in any way manage your caregiver for you. Like anywhere you live, you need to communicate the rules of the property to your caregiver and make sure that they are followed.

Some people rely on a parent or relative as their caregiver, full or part time (for personal reasons, such as living in a rural area, health reasons etc.). In this situation, you should still be able to own your decisions independently (such as having management over your life and finances) as an adult in order to maintain a healthy relationship with your family. Communication and mutual understanding and respect is important. You must be able to ask a family member if you would prefer them to do a task an alternative way or tell them if you are uncomfortable with something. Again, the choices must be yours.

Another concern that comes up in this situation stems from a lack of clarity about who your caregiver reports to. It needs to be made clear that your caregiver reports to you and not your family. An example: You request that your caregiver wait out in the other room while you and your partner have sex. Your caregiver is highly uncomfortable with this request for their own personal reasons, and tells your family what you are doing. This action on his/her part is both a highly unprofessional violation of your privacy as an adult and potentially illegal depending on the situation.

Spouses or Romantic Partners

Living (and sharing a bedroom) with some type of romantic or sexual partner shares a lot of functional similarities with living with a housemate, only the bedroom also becomes a shared space and the personal relationship you are balancing has added complications and privacy issues. However, you still need to discuss all of the same boundaries, house rules, responsibilities and schedule with your partner, and then communicate those to your caregiver.

Keep in mind that unless caregivers are paid privately, they are probably not allowed to do any household tasks or provide assistance for your partner, or any other member of your household.
The division of household chores and responsibilities, such as laundry, cooking, cleaning, finances, and other concerns, should be discussed in advance among household members, so that everyone knows who is responsible for a particular household task. Asking caregivers to do more than they are being paid for leads to an awkward working relationship and potentially the loss of a caregiver.

The discussion with your partner also needs to include a frank conversation about privacy concerns. Some questions to consider together: Are you going to schedule your caregiver hours so you can have regular alone time with your partner? What boundaries are you going to communicate with your caregiver if they happen to arrive while you and your partner are still in bed or undressed? If you have 24 hour caregiver services, how will you handle setting boundaries with them when you and your partner want to have sex or just talk by yourselves? If your partner is still responsible for some part of your personal care, how are you going to arrange for them to have his/her own private mental health time if it is requested?

A note: Even though there are many people who act as a caregiver for their partner with a disability, we do not recommend that you solely rely on your partner as your primary caregiver if at all possible. It not only is incredibly stressful on your partner and your relationship, but it forces you both in to a dual relationship that gets very frustrating. In a working relationship with a caregiver, you can ask for your care and household duties to be done the way you want, at the schedule that works for you because you are managing the caregiver and they are there solely to assist you. If a caregiver doesn’t work with you in a way you like, you can fairly easily find a different caregiver to work with. Treating your partner this way often leads to conflict because there is generally an expectation of equality in your relationship. Your caregiver can also deal with potentially unpleasant personal care tasks that you’d rather your partner not be responsible for. Working with a separate caregiver gives you your own mental health time and more authority over your own life. Additionally, over time this dual relationship can lead to a shift in how your partner and you view each other, your sex life, and your relationship.

Conclusion

This is nowhere near an exhaustive discussion of balancing caregivers and personal relationships, but is meant as a summary of commonly heard concerns and our collective, unprofessional opinions on these issues. Remember: Balancing your life and managing your caregiver and personal relationships is up to you, the person with the disability receiving care.

Can you think of other related issues or concerns? Have an opinion or story to share? Feel free to comment below!

Women and Virtual Spaces

This article was originally posted on Yahoo! Accessibility.

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

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

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

Potential Complications

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

Conclusion

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

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

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

 

Sources:

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

The Internet, Disability and Artistic Expression

This article was originally posted on Yahoo! Accessibility.

Feminist Art Movement

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

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

Art Online

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

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

Women with Disabilities

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

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

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

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

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

Sources:

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

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

Original Cyborgs: Disability and Technology on Yahoo Accessibility

This article was originally posted on Yahoo! Accessibility.

The Exploration of the Cyborg

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

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

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

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

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

Disability and Technology

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

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

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

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

Conclusion

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

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

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

– Jennifer Cole, Director

 

Sources:

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

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]).

Social Media Makes Us “Less Human”?

This article was originally on Yahoo! Accessibility.

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?

Before the existence of social media

Instead of commenting on the general argument, we’d like to talk about a specific issue. What about people who were already disconnected from face-to-face contact? There is a large population of people who were highly socially isolated before the existence of social media, due to disability or other factors. Even if they had the physical ability to go out and meet people face-to-face, and even assuming that they were accepted into general society as an equal human being (which is a huge assumption for people with disabilities), would there even be people with similar experiences in their community for them to relate to? If you are a city dweller, you may run into other people with disabilities or be able to go to specific disability-related cultural events in order to meet people who can understand your experience. What if you live in a smaller town or an isolated area, where there are very limited or nonexistent opportunities for you to meet other people?

And let’s go back to that assumption of society treating someone with a disability as an equal human being. Many people with disabilities rarely experience being treated as “human,” with all of the associated normal struggles and strengths. Particularly if you are someone who has a visible disability, the standard face-to-face interaction with others in public is too often tainted with infantilization and a general sense that you are being seen as something distinctly “other.” How do we find commonality with others in that?

“Normalizing” potential of social media

What if, for some of us, the “normalizing” potential of social media allows us to be seen for who we really are underneath our meaty exterior? Wouldn’t that, in fact, make us more human rather than less? For those of us who are isolated for whatever reason, doesn’t the ability to find people we can relate to on a very personal level also make us more human? We are not saying that social media is the answer to everything. It isn’t. If you use it without an eye to balance, outreach, and human connection, you will probably feel fairly isolated. We are saying that people can choose to use any social situation, technology-mediated or not, in different ways. Sure, if you choose to isolate yourself from those around you, you are going to be isolated. But you can also choose to open up entirely new worlds. You can use social media to get involved in groups and nonprofits. You can make friends online that carry over into face-to-face relationships (which many of us have done for many years). You can find people with things in common with you who might be impossible to find where you are.

Every week at GimpGirl Community we come together online via synchronous methods (like Second Life and IRC) and asynchronous platforms (like LiveJournal and Facebook) to share commonality with others. We share strategies for dealing with frustrating medical systems, and tips for how to better utilize adaptive equipment. We talk about better ways to have sex, or find locals we might share commonality with. We vent frustrations that no one without similar experiences would understand. We help other members going through abuse, or trying to find ways to get out of bad situations. Some who join us probably leave the same as when they entered our little corner of the ‘net, but most leave saying they feel surprisingly more human than when they came.

 

Sources:

Turkle, Sherry. (2011). Alone Together: Why We Expect More from Technology and Less from Each Other. Basic Books.

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.

Women with Disabilities in the Modern World: A Brief Introduction

This article was originally posted on Yahoo! Accessibility.

The modern web is full of great advice for the modern woman. There are lots of lifestyle sites to be found, a plethora of “mommy blogs”, and a cottage industry of communities for women from all walks of life, like our friends at the all-encompassing BlogHer.com.   There are countless campaigns promoting issues specific to women’s health and wellness, self-esteem, human rights and abuse, and in this age of social media, they are able to receive the exposure they well deserve.

What many don’t realize as they seek advice, share stories, commiserate, and fund raise with other women is that (at least in the United States), as many as 1 of 5 of their fellow moms, aunts, sisters, colleagues, and friends is a woman with a disability.

Why would they necessarily realize it? Many of us who are women with disabilities are  busy enough just trying to live our lives the way any woman would, with the same stresses, stories, and successes as our non-disabled neighbors.  We are similar in as many ways as we are different, so self identifying as a woman with a disability doesn’t always come up.

And yet, there are some important ways in which we’ve discovered attention should be paid to the lives of women who also happen to have disabilities.  As women with disabilities, we’ve got a responsibility to ourselves, our loved ones and our communities, to understand some very real dangers that come with the territory of being who we are. People who don’t have experience with disabilities in their lives should also be aware of what is out there, because without allies, there will never be enough awareness to change some of the disturbing facts we’ve discovered over the years.

Here are just some of the US-based statistics we’ve encountered:

  • At least 20% of U.S. women have some kind of disability. Women with disabilities face the same issues all women do, but generally at higher rates and with additional barriers.
  • Women with disabilities struggle with poverty, as do many women in this world, but more than 2 1/2 times as many live in poverty as women without disabilities. That is more than a quarter of all women with disabilities, which is a rate higher than men with disabilities in every age group according to the 2003 U.S. Census.
  • According to Smith and Ruiz (2009), studies have shown that women with disabilities are more likely to have healthcare coverage (92.1% vs. 86.9% women without disabilities). However, women with disabilities are much less likely to gain access to healthcare services due to additional costs, limitations in coverage, and inaccessibility
  • In a Center for Research on Women with Disabilities (CROWD) study on access to healthcare, nearly 1/3 of women polled stated they had been denied access to services solely because of their disability even though it is illegal to do so.
  • The rate of abuse of women with disabilities is similar to that of women without disabilities (52% over the lifetime of a woman). Rates of abuse can be drastically higher among women with certain types of disabilities. If you take women with disabilities as a whole, however the abuse tends to be more frequent, over a longer period of time, and by more people within that individual woman’s life. To women with disabilities abuse is not only physical, mental, and financial. It also includes prolonged lack of assistance with activities of daily living like eating, bathing and using the restroom (neglect), and withholding assistive devices (walkers, wheelchairs, etc.) or medication.
  • Women with disabilities also have fewer opportunities to leave an abusive situation. Medical and mental health professionals frequently do not understand the breadth of abuse, nor do law enforcement officials and social workers involved in providing assistance and refuge. Studies by CROWD show battered women shelters do not provide adequate disability-related support services (other than support for mental illness) that would allow a woman with a disability to access these services (such as attendant care, and other supports needed to function and deal with the trauma of abuse). There is also a severe lack of outreach by shelter programs geared toward women with disabilities, even if accessible services are available.

Women with disabilities often face these challenges in silence and isolation.  Disbelief that such abuse and discrimination are possible, failure to recognize that people live at the intersection of class, ability, and gender oppression, and lack of education about the issues are prevalent even among dominant feminist and disability communities.

What else have we found out? Despite all of these challenges, or maybe because of them, women with disabilities are vital individuals that have the ability to create not only their own life and identity, but also have much to offer the world.

These statistics, and even more than that, the conversations and stories that we share, teach us that there is a wealth of experience among women with disabilities across age groups, cultures, and many other identifiers. Along the way, we discover differences, as well as some common ground among many of of the women we’ve encountered:

  • Many of us have the ability to see the world as both the caregiver and receiver of care at a younger age, giving us a broad understanding of the cycle of life not understood by many people until the end of life.
  • We have the ability to see our bodies as unique and powerful, as well as see the uniqueness in other bodies that society deems unworthy.
  • We can also, if we so choose, sexualize our bodies despite the dominant voices of society telling us we are unattractive, undesirable, and incapable of sex or being sexy.
  • We can give birth and raise children despite medical professionals and society telling us it is impossible.

Our negative statistics seem to go on and on despite the data being incomplete, while the positive discoveries never seem to be enough at times. This is why as a group, we challenge ourselves to face these realities head-on. To admit them to ourselves, and to share them with others. We encourage women with disabilities to educate themselves, be proud of who they are and how far we have come, and also to fight against stigmas and statistics that follow them. There is a delicate balance between living our lives and fighting for them, and too often, too many of us are fighting. In a more perfect world, this balance would be different but for now we need to focus on the commonalities we have, and stick together through the fights we must face, as well as the great joys in life we share.

Source material: Sunday, November 22, 2009 – Virtual Praxis II – Women with Disabilities Event Resource