When I began blogging, I never thought about the fact that what I wrote about being a quadriplegic might be the reader's first impression of what it's like to live with a disability. I never considered how writing about confronting a person who called me a "cripple" would attract both rage and admiration. I didn't intend to present myself as the "face of disability" but, to some readers, that is exactly what and who I am. The words I write and how I describe my daily life may define disability totally for some readers. For others, the positions I take on current issues may be attributed to all people with disabilities. And to think that this dynamic is taking place throughout the blogosphere is enough to muddle anyone's brain.
In my day job as an attorney, I often advocate for people with disabilities and find myself butting heads with able bodied professionals who seem to know nothing about the reality of living with a disability as it applies to their profession — or patients, clients, et. al. Even so, I encounter clients with disabilities who tell me that I don't understand their needs because I work. Some days I roll away feeling as if I've been put in my place by both groups as an "uppity gimp," so I find it laughable when anyone thinks I speak for all people with disabilities in my blog. But it's not funny, because people who are not disabled and are unfamiliar with the disability culture have no clue what a diverse, complex group of folks we are. We can be differentiated by the type of disability we have (e.g., even paraplegics differentiate themselves from quadriplegics); whether we work or not; our sex, race, and culture. To these readers, my blog is about disability and I, the author, am the authority.
Do I transmit the values of the disability culture in my blog? I like to think that I am a part of that but only in connection with relative to other disability blog writers and advocates. Those of us who blog about our daily encounters with ableism, our struggles with an inept social service system and the news stories that cause us to shudder, like "dying with dignity" and the Ashley Treatment, form a group that teach Disability Studies, although with different methods than the didactic ones used in universities.
There is an ever-changing current in the blogosphere, one that is based not only on the fact that there is immediate access to new issues concerning disabilities, but also on the interplay of personalities among blog writers. For example, when one blogger writes a post about Ashley X, others read it, link to it and then form their own opinion. As the number of posts grows with bloggers referring to each others' posts and readers' comments, what has just been created in the blogosphere is a body of writing that, not unlike research, expresses the theories of those who are blogging.
Unlike academic research in the field of Disability Studies, however, there is no oversight of bloggers, but the comments may function on some level as a form of peer review. Due to a larger readership, one blogger's point of view may be repeated more often than someone else's but anyone may — and will — disagree with anyone else. Bloggers have been known to completely change their position on an issue if a new fact appears or even if a new comment by a reader is compelling. This expands the discussion on the issue in even more directions. The absence of hierarchy or structure allows for wide-ranging discourse on any given issue.
Yet, despite this free exchange of information, a common language develops among bloggers, particularly those who frequent each others' blogs. And this language often refers to the field of Disability Studies. Those who are more familiar with studies in the field or terminology add that to the mix when they post in their blogs and other bloggers pick up the language. Sometimes bloggers who are "uninitiated" in the field of Disability Studies write posts about how their identity is changing once they read about a social model of disability for the first time on someone else's blog. This is, of course, not the language they use, but it's clear that this is the process that's taking place.
This process is further moved along by the many forms of interaction between people in the blogosphere — bloggers are not only reading other bloggers but are reading comments left about their posts. This immediate feedback to personal information by other people with disabilities can redefine what looks like a personal experience by a blogger into someone who is, for example, a "witness" of discrimination by a reader who is familiar with the social model of disability.
This in itself is exciting enough, but in the world of blogging it's never about one thing going on. There are always several dynamics taking place simultaneously. Each comment puts a different slant on the post, raising more issues and concerns that are tangential to the original story or information posted. The blogger may then put up a second post in response to the comments or the discussion may die down for the time being and be referred to in a later post or on someone else's blog. Since some of us are in the multiple roles of blogger, commenters, and readers for, by, and with each other, the interactions among us results in a sharing of knowledge that is often spontaneous and wide-ranging.
Unlike an academic setting, there is no syllabus or course of study. Bloggers blog about life and, in our case, living with a disability. What is striking is that no matter how varied our posts are on any given day, it is common to see that a number of bloggers gather at any particular blog, much like a cyber water cooler, to read and comment on a post there. This "migration" to a particular blog is affected by who links to whom and, in some cases, what a blogger or reader may know about another blogger. For example, when a fellow blogger was recently on CNN and I saw a post by her that she wouldn't be blogging for a while because she felt overwhelmed, I checked three times a day until I saw a sign of life from her. I was not the only one. There were over 150 comments at her blog — and that didn't include folks like me who did not leave comments.
Even more importantly, migration to a particular blog is often determined by which blogger has previously posted on a certain topic. Other bloggers look for updates at that blog. With each new update the process of writing, reading, and commenting starts all over again, building on the prior information. Since many bloggers write about current issues that involve and affect people with disabilities and receive updates through news feeds, emails and list serves, there is a constant stream of new topics, points of view, and updates on old topics. Compared to a textbook published and occasionally updated, blogging is the 24 hour-a-day 7 Eleven with a drive through window.
Of course, the issue arises as to whether the information posted on blogs is correct. And while sometimes it isn't, usually it is. Most bloggers link to news articles, videos and other "hard" sources of information. There are, of course, those bloggers who pick up on someone's post and link to that, but that doesn't fundamentally change the source. By using other digital mediums to discuss issues concerning disability, bloggers with various disabilities are able to have an impact on their readers in sometimes stunning ways.
One autistic blogger who blogs as ballastexistenz (http://ballastexistenz.autistics.org/) posted a video of herself on YouTube and appeared on CNN. She then demonstrated how, although she does not speak or have eye contact, she communicates through a keyboard. Modus Vivendi (<http://trustlight.blogspot.com/>), a blog about people with disabilities who do art therapy, posts pictures of their artwork. The diversity of presentation is as broad as the number of disabilities that are blogged about. As I travel from blog to blog, I see a celebration by people who have found the courage to state who they are in a place where it is more fully allowed than in society — the blogosphere. And the readers come even when we call them temporarily able bodied or neurologically typical.
There is something about the safety that the Internet provides that is allowing our communities to begin a dialogue that is new and one where disabled people are the authors. This includes people with disabilities who cannot speak, some who can only draw, and others who cannot leave their homes. Their voices are powerful, sometimes raw. Their stories say what it's been like to live their lives despite thousands of years of discrimination and exclusion. They still risk censure, even in the relative safety of the blogosphere. Readers, including those with and without disabilities, leave comments that may silence a blogger for a while, but most return and begin posting within days, sometimes hours.
Our voices that have been silenced for so long represent, in my opinion, disability culture. Our combined writings, videos, photos, and drawings are the new textbooks for Disability Studies. And as the blogosphere continues to grow and expand, there will be even more creative ways that people with disabilities will find to teach others who we are and how we live.
