Disability Activism in Blogging and Social Media

By Keith Murfee-DeConcini

DSAB 622: Disability in Mass Media, Fall 2017

 

Blogging and other uses of social media on the internet have become very important communication tools today. The disability community has found these tools extremely useful in a variety of ways:  as a means of connecting with others, sometimes simply by sharing their daily lives; as a way to stay informed about what is written about disability subjects; as a way to become visible; as an way to become involved and/or informed as a disability advocate or activist; or simply to have a voice in the world of ideas.  Because of the growth in professional and personal blogs related to disability subjects, blogs have also become a way to bring disability issues to the forefront of the public’s attention, particularly when a public policy issue is at stake.  Sometimes disability bloggers even become spokespersons on mainstream media, such as CNN.

It was with this growth in mind that the editors of Disability Studies Quarterly (DSV) decided in 2007 that, “the time was right for a preliminary conversation in print about the social and intellectual dynamics of web logging.” (Kuusisto, 2007)  The act of blogging is recognized now as a dynamic tool in helping encourage social change.  As Stephen Kuusisto reflects at the end of his introduction to the 2007 issue of DSQ: “When we consider the long history of social isolation that has surrounded the experience of disability we can sense the remarkable opportunity that is at hand.” (Kuusisto, 2007)

Personal blogging can take many forms, by being published on a Blogspot or on an individual’s web page, anonymously or with a moniker.  The Goldfish, a moniker for a blogger, in his 2007 article written for DSQ, entitled Blogging Brings More of Us to the Table, describes his experience, “I believe that blogging has a unique role in opening up debates around disability to a greater spectrum of both disabled and non-disabled people. These on-line debates are necessarily informal, but by no means ill-informed.…To me, blogging is a very personal lifeline…. I might not have an enormous crowd gathered around my own particular soapbox, but it is the only soapbox fully accessible to me.” (Goldfish, 2007)

Blogging is often not only a personal expression of someone’s thoughts and feelings, rather it also can become a powerful tool used for communicating personal viewpoints to the greater world. This allows an individual acting on his or her own behalf to be able to build an audience of some kind, regardless of the size.  Further, a personal blog does not have to be a strict, week by week undertaking; it can be intermittent tool.  The author of The Gimp Parade blog, Kay Olson, came to this realization after spending four months in a hospital in 2006, when she was not able to blog.  In her post for DSQ in 2007 entitled Making Connections: Linkages Through Disability Blogging, she reflects that, “In the past year [2006], my blog has turned into a surprisingly prolific communication tool, not just through my blog entries, but the visitors who comment….There’s an exciting, if not particularly rigorous, ongoing multi-blog conversation about disability theory, disability identity, and disability’s relationship to other social experiences like gender, race, and age that seems to be emerging on the internets.” She concludes by stating that the purpose of her blogging and that of other blogs on disability is that of making connections. “I suppose that’s pretty basic — making connections — but it’s what disabled people everywhere need most, in my opinion.” (Olson, 2007)

Professional blogs, on the other hand, act more like traditional media, in that they publish regularly and have “calls for submissions” pages.  Anyone can submit but the standards for acceptance can be high and similar to traditional media.

Kay Olson highlights several other blogs in her post for DSQ to emphasize the power of a thoughtful and engaged community, even when those communities are possibly at odds with each other from time to time. These range from topic community blogging (for example, Echidne of the Snakes and Alas: A blog), to mainstream news sites like CNN requesting comments from disability bloggers.

The origins of writing blogs started in the early 90s but it was not until the late 90s when blogging really took off. As Alicia “Kestrell” Verlager wrote in the beginning of her article in DSQ, even when she started blogging in 2003, it was still a new concept: “Blogging was considered to be something strange and suspect in itself, like reading porn or well, having a disability.” (Verlager, In Other Words: The radical nature of telling stories through blogging , 2007)

Author of The Blind Bookworm Blog, Verlager reflects further that, “The ultimate irony in all this [blogging] is that I am not naturally the sort of person who finds it easy to discuss my private and personal experiences to other people, let alone in an extremely public forum…. One of the things which I find most appealing about blogs is their aspect of combining both academic and/or technical knowledge and more general knowledge.” (Verlager, In Other Words: The radical nature of telling stories through blogging , 2007) Yet, she ends up writing two very poignant autobiographical posts in the process of blogging. (Verlager, my memoir, part 1, 2006) (Verlager, Becoming Science Fiction, memoir part 2, 2006)

While not all people with disabilities are able to actively participate in advocacy in person, what is great about living in this age of internet connectivity is that people who are unable to leave their home on any given day can still participate in the political process, either by computer or smartphone. There are ways to get involved in the political process that were not available ten or twenty years ago.  Blogs and social media are prime examples.

This paper will examine disability activism through blogging and social media, by exploring two professional blogging sites, Rooted in Rights and The Body is Not an Apology, and a disability organization’s Facebook page, The Disability Visibility Project, to further illuminate this powerful new force in the disability community.

Rooted in Rights

Disability Rights Washington, a disability organization based in Seattle, Washington, created Rooted in Rights in 2015, with the purpose of being the premiere blog site about disability issues, written primarily by people with disabilities.  Their mission is “to tell authentic, accessible stories that empower our community to advocate for disability rights.”  On the ‘about’ page of their website, Rooted in Rights says it also “… produces videos and social media campaigns exclusively on disability rights issues.”  (Rights, 2017)

The narrative models used in Rooted in Rights’ blogs fit the progressive categories, such as Minority/Civil Rights, Legal, Cultural and Consumer.  While this paper will only explore a few of the blogs featured on the Rooted in Rights website, the number of topics that the blogs focus on is extensive (twenty-two different areas), from advocacy to employment, healthcare and transportation. The website even covers state, national and international news. Plus, the videos, documentaries and campaigns it publishes are equally comprehensive. Clearly, labeling Rooted in Rights as a blog site is an understatement, as it is only one aspect of a thriving, multi-faceted website.

In the final blog of 2017, (published on Dec. 22, 2017), entitled How ADAPT and Allies Changed the Conversation About Disability Issues in 2017, author s.e. smith offers this recap of tumultuous events throughout the year: “Many nondisabled people were introduced to disability rights activism in 2017 with splashy protests from ADAPT, Housing Works, and other organizations who fought ferociously to defend health care on Capitol Hill…. While the wins on health care were very public, some of the other work accomplished in 2017 was more subtle — but also very important.” (Smith, 2017)

This is true. The year 2017 has seen much public political upheaval in this country and disability rights and issues have been at the forefront of many debates.  In fact, many of the most high-profile demonstrations in Congress were led by members of the disability community.  Some of these issues have been focused on extensively, like health care and employment for people with disabilities. Other issues, like accurate media representation of disability (though not usually thought of as a political issue) have not been covered as extensively, but nevertheless picked up prominence with new shows like Speechless on the ABC network, where an actor with a disability is featured, for example.

The s.e. smith recap article follows the Minority/Civil Rights model, defined as, “People with disabilities are seen as members of the disability community, which has legitimate political grievances. They have civil rights that they may fight for, just like other groups. Accessibility in society is a civil right.” (Haller, 2000)

The editor-in-chief of Rooted in Rights, Emily Ladau, recommended that I read a blog on an unusual topic that people might not consider a disability issue, but nevertheless is, because it is such an important human issue:  climate change.  Author Tiffany Yu, who is the founder of Diversability, a social enterprise network focused on disability inclusion, writes in her article (published on Dec. 11, 2017), that it is time to claim climate change as a disability rights issue (entitled It’s Time to Recognize Climate Change as a Disability Rights Issue).  “When issues like discrimination, access to adequate healthcare, unemployment, and poverty are among our top concerns, climate change tends to be an afterthought. When we are fighting for basic human rights and equality, how do we have time to think about climate change? Being concerned about and fighting for climate justice is a privilege. What I learned was that we–the disability community–are the ones who need to be at the forefront of this movement.” (Yu, 2017)

She is right and we can see why, especially in the wake of all the natural disasters that happened in 2017 and their effect on the disability community.  Yu references another article by s.e. smith (published on Oct. 2, 2017), entitled Why Involving Disabled People in Disaster Planning Saves Lives, to prove her point. Natural disasters often hit vulnerable communities the hardest and even with the most meticulous planning, groups like the elderly and the disabled may still be underprepared. Smith concludes that in order for government (both federal and local) to be able to engage with the disability communities, they need to understand that, “Meeting the needs of the disability community requires acknowledging that the community exists, and caring about it…. No one knows the needs of the disability community like another disabled person.” (Smith, Why Involving Disabled People in Disaster Planning Saves Lives, 2017) This means people with disabilities should serve on emergency planning groups and commissions, as a beginning point of departure.

Yu’s climate change article is a very interesting subject that does not fit easily into a single narrative mode because the topic is so far reaching.  She defines climate change as a human rights issue, which by definition affects all who live on this planet.  Since people still struggle to understand disability rights, especially if it does not affect them personally, the Minority/Civil Rights Model is a possibility, even though extreme changing weather patterns do not just affect minorities.

The legal model focuses on the law and that, “it is illegal to treat people with disabilities in certain ways. They have legal rights and may need to sue to guarantee those rights. The Americans with Disabilities Act and other laws are presented as legal tools to halt discrimination.”  (Haller, 2000) But this model may not apply, as again, climate change does not discriminate solely against people with disabilities, but rather the whole of humanity.  Still, there are legal aspects associated with climate change which might be recognized.

The Cultural Pluralism model views people with disabilities as multifaceted people, while the Consumer model focuses on people with disabilities are an untapped employment resource and that further, businesses should want to be more accessible to them. (Haller, 2000)  So there are aspects of these models that may apply to climate change.

All of the progressive models seem to not exactly fit an article about the changing climate and its effects on people with disabilities.  On the other hand, a case could be made that all of the progressive models of disability fit this article because the topic is so complex – the health of the entire planet – that it requires the consideration of multiple models.

Another interesting point from Smith’s recap article is the importance of bi-partisan efforts.  “Finding leverage with the Democrats doesn’t mean ADAPT is done with the Republicans,” she says.  She also quotes Stephanie Woodward, an ADAPT activist, who agrees: “The entire party isn’t against us… and ADAPT intends to leverage that.” (Smith, 2017)  This is in reference to Democrats being the primary supporters of the Disability Integration Act (DIA) (Democratic Party, 2017), while the majority of Republicans were against it, save one lone Republican co-sponsor. (Federal Government, 2016)

The overarching point of smith’s article is that disability rights should not be considered as a partisan issue, but instead as bipartisan in nature. This extends to not only keeping healthcare intact for all who need it, but also in firm opposition to a new national threat:  HB620, the so-called Americans with Disabilities Act Education and Reform Act of 2017, which basically undercuts fundamental disability rights. (Jones, 2017)

H.R. 620 is now understood to be one of the biggest threats to disability rights, threating to take the country back to pre-ADA times (before 1990), when businesses did not have to be accessible to people with disabilities at all. The inspiration for H.R. 620 began as a few states, notably California and Arizona, passed their own ADA notification bills, which allow businesses extended time to make their locations accessible before facing a lawsuit.  Other states, such as Oklahoma, Maryland, Texas, and Florida, are in the process of adopting similar legislation. (Malaier, 2017) (Jones, 2017)

The new law in Arizona, S.B. 1406, allows businesses throughout Arizona to take a “wait and see” approach to regulations set forth by the Arizonans with Disabilities Act (AzDA), rather than immediately addressing them.  Author Sparrow Rose Jones in her article (published on May 30, 2017), entitled New Laws Could Put Access on the Line at State and National Levels, quotes Sarah Kader, staff attorney for the Arizona Center for Disability Law, who said that, “It feels like just a general hacking away at disability rights…. so we did, to some extent, lose here but we get up the next day and keep fighting.” She adds, “I think discrimination based on disability, unfortunately, is still totally acceptable in mainstream society. And so they just don’t see it as a civil rights issue.”  (Jones, 2017)

Arizona disability advocates agreed with her assessment, as they lamented the day Arizona Governor Doug Ducey signed the bill into law, “contending [that] he and state legislators chose business interests over civil rights.” When the Governor put out the statement that he “cares deeply about making sure Arizonans with disabilities have full access to public services,” outrage from the disability community was sharp. “Currently, no minority group or other protected group is required to notify a business or organization if they intend to exercise their civil rights…. SB 1406 creates special, separate rules for people who have disabilities. “(Polletta, 2017)

It is clear that Arizona was one of the breeding grounds for the birth of H.R. 620 in Congress. A counterpoint reaction to H.R. 620 and other similar bills would be the Consumer model, which not only focuses on the notion that people with disabilities can and should be employable, they should also be considered active consumers and that latter notion should inspire businesses to be accessible to them.

The blogs that Rooted in Rights publishes (four per month), are written primarily by people with disabilities for people with disabilities, but that does not mean that nondisabled people cannot or should not read them and learn from them.  Rooted in Rights is very committed to advocacy for disability rights and issues.  Most of the staff have disabilities themselves and their guest writers and speakers often have disabilities or have worked in the disability rights field, or both. The blogs are written assertively, like someone is speaking about a topic about which they are really passionate. They are very informative and cite other publications often.  Blogs often include at least two or three other linked topics to support their point or to gather background data. For a site that has only been in existence for a couple of years (created in 2015), Rooted in Rights has done an amazing job in writing about a variety of topics, as well as reporting on some of the most pressing issues of the day.

Another critical and creative part of the Rooted in Rights website can be found in their Storytellers series, video that “recruits, trains, equips and employs people with disabilities across the globe to tell their own stories through video.” This Storytellers series is a major focus of Rooted in Rights’ social media platform.

The Body is Not an Apology

The Body is Not an Apology (TBINAA) is a somewhat unusual website that describes itself as “…an international movement committed to cultivating global Radical Self-Love and Body Empowerment… [TBINAA] fosters global, radical, unapologetic self-love which translates to radical human love and action in service toward a more just, equitable and compassionate world.”  Its vision expands on this notion: “We believe in the possibility of sustainable social change, community, and personal health and wellness. We know such change must be built on a foundation of deep radical self-love.” (TBINAA, 2011)

Here we see disability as one topic among many, such as Weight/Size, Disability, Sexuality, Gender, Mental Health, Race, Aging, Rad Parents, Men, Global, Intersections and “H” (which stands for “handle it”).  One could make the assumption that disability is among this website’s topics because of its emphasis on empowering the love of one’s own body, no matter what it looks like.  Since this paper is on disability, the only section reviewed is the disability related blogs.  It is interesting, though, that several disability blogs are cross listed at both “Disability” and “Intersections,” showing the relationship between disability issues and other topics.

Author Cara Liebowitz wrote an article (published on Nov. 23, 2017) entitled At the Intersection of White Privilege and Disability.  She opens with an acknowledgement that, “I inhabit both privilege and dis-privilege in this body.” (Liebowitz, 2017)  She contrasts her experience with that of one of her ex-boyfriends, when they were walking around a train station and ran into another friend of hers. Both her ex and her friend are disabled men of color and even though they had not met before, they began talking about their experiences as disabled men of color. She reflects that, “As I listened, I realized that even though my boyfriend and I share the same disability, we are having very different experiences in how society sees and treats our bodies. While people often viewed me with pity, they viewed him with distrust and even fear.” (Liebowitz, 2017)

Liebowitz then goes on to showcase several disabled people of color (both men and women) who are doing work within the disability rights movement.  As she explores the intersection of race and disability, she states that, “The faces we see in the disability rights movement are primarily white… but this movement has not been without the contributions of people of color.” She concludes that the disability rights movement has to do a better job of raising “the profiles of amazing disabled activists of color.”   (Liebowitz, 2017)

The next post reviewed is cross-listed in the sections “Mental Health” and “Disability.” Author Aabye-Gayle Francis-Favilla writes about her experiences with an invisible disability (published on Dec. 4, 2017) entitled Depression Is Not a Weakness: Recognizing Your Strength In the Process. Depression is perhaps one of the most common invisible disabilities.  But, as Francis-Favilla explains, “All too often, depression doesn’t get the attention it deserves. Too many find it impossible to reconcile depression with our fast-paced, wealth-, success-, pleasure-driven world. We tend to avoid our more difficult feelings, so depression gets denied and dismissed. It’s nothing to be embarrassed about, but many feel (or act) as though it is.” (Francis-Favilla, 2017)

The root of the problem is society’s failure to react compassionately towards people with depression. Just because a medical issue does not have a physical manifestation does not mean that it is not real. Just because depression exists primarily in the mind does not mean someone can wish it away with some form of magical thinking.

As Francis-Favilla concludes, “Depression is not a weakness. In fact, it takes great strength. For someone who is depressed, even the easy parts of life require effort. It is hard work to reside in the darker parts of yourself. It takes great courage to admit you’re broken or to seek help.” (Francis-Favilla, 2017)

In the only post reviewed that was not cross-listed, author Taylor Carmen opens her article on making activism more accessible (published on Dec. 15, 2017), entitled Accessible Activism: 4 Steps to a More Inclusive Movement, with this declaration: “In a political climate that feeds so much on fear, activism is both more necessary and more difficult. Organized protests and events are meant to remind us that we are not powerless in the face of those who do not act in the best interest of the whole. However, if we do not make these things accessible to all who wish to join the conversation, we fail in our goal.” (Carmen, 2017)  She then details four steps to make activism more accessible for people with disabilities, as every protest group even with the best intentions might not think of these steps on their own. This article not only follows Minority/Civil Rights model, but shows the writer’s passionate advocacy of having people with disabilities participating in a wide range of political activities and the necessity of making these events accessible to all.

In the handful of articles reviewed from TBINAA, the one by Liebowitz and also the one by Carmen clearly follow the Minority/Civil Rights model. The article from Francis-Favilla is a counterpoint against the Medical model of disability, which says that, “Disability is presented as an illness or malfunction. Persons who are disabled are shown as dependent on health professionals for cures or maintenance. Individuals with disabilities are passive and do not participate in ‘regular’ activities because of disability.” (Haller, 2000)

The viewpoints expressed in the articles reviewed from Rooted in Rights and TBINAA are focused on disability and disability related issues from the perspective of people who either have disabilities themselves and/or work in the field of disability rights. While Rooted in Rights focuses exclusively on disability rights topics, TBINAA has a more far-reaching mission, in which disability is only a part. Nevertheless, the disability articles on TBINAA often overlap with other sections on the website. The disability section is written primarily by people with disabilities and therefore is treated with the respect it deserves.

Disability Visibility Project

The Disability Visibility Project (DVP) was created by Alice Wong in 2014, as an online hub for the disability community to bring their thoughts, opinions and beliefs about disability media and culture to the forefront.  DVP firmly believes that the expression of the disability narrative belongs to and should be told by people with disabilities.  DVP’s Facebook page fosters “conversation and sharing the latest news of interest to the disability community.” (Wong, 2014)

Wong runs the Facebook group with two other moderators and the amount of posting that the group provides daily is impressive.  Often the daily postings can be considered a snapshot of disability news, sometimes even from mainstream media. This section of the paper will analyze a few offerings from the Facebook page.  There is no listing of the number of topics covered, but a review shows that it is extensive. This is in contrast to the two disability web sites discussed earlier in this paper, that each list the number of topics or categories covered.  It is important to note that at the time of this writing, the DVP Facebook group has over 13,000 members. The Facebook page becomes a useful resource to them about many publications and articles that touch on disability subjects.

Shared by Wong on Jan. 1, 2018 is a post from ThinkProgress (published on Dec. 14, 2017) entitled 90 percent of all executions in 2017 may have involved people who were innocent or had disabilities, by Addy Baird. The post is about how the death penalty has been used against those who are innocent and/or against those who have disabilities. While there is an overall decline in the use of the death penalty, “New research shows significant evidence of mental illness, brain damage, intellectual disability, severe trauma, or possible innocence in nearly 90 percent of capital punishment executions carried out in 2017, according to a report compiled by the Death Penalty Information Center [DPIC].” (Baird, 2017)  Out of the twenty-three red flag cases, “six people executed had significant evidence of mental illness, 10 had significant evidence of brain injury or brain damage, and 18 had evidence of serious childhood trauma, neglect or abuse. Several had evidence of multiple impairments.” (Baird, 2017)

This story highlights the abusive use of the death penalty against those who have disabilities and/or who are innocent of any crime.  These facts are revealed through the DPIC study only after the persons have already been put to death. According to the DPIC Executive Director Robert Dunham, ““If you’re going to have a death penalty, you want it to be administered in a way that’s fair, and if you believe that there should be a death penalty, it should be reserved for the worst of the worst cases and the worst of the worst defendants…. That’s not who was executed. The death penalty appears to be carried out not on the worst of the worst, but the most vulnerable.” (Baird, 2017)

This story follows the legal model of disability, which states that, “It is illegal to treat people with disabilities in certain ways. They have legal rights and may need to sue to guarantee those rights. The Americans with Disabilities Act and other laws are presented as legal tools to halt discrimination.” (Haller, 2000) In fact, this story makes one question the value of having a so-called “justice system,” because as the 23 cases highlighted so shockingly, justice was not served, not even close!

Shared by Wong on Dec. 24, 2017 is a post from the Medium (published by Dec. 11, 2017) entitled How Every Issue Is A Disability Justice Issue, by Marion. The post looks at a number of issues from citizenship to employment, from healthcare to environment and infrastructure — and makes the case that all of these are, in fact, disability justice issues. It is refreshing to read posts that boldly claim that, “Taking steps towards accessibility and inclusiveness is not a charitable gesture, but a basic requirement of a democratic society.” (Marion, 2017) While this post follows the Minority/Civil Rights model closely, at the beginning of the post, the author lets you know that, “Disability justice is not a minority issue: it benefits us all.” (Marion, 2017) This is perhaps one of the greatest lines that the author of this paper has ever read.

Shared by Wong on Dec. 24, 2017 with the statement: “This is why it’s so important to have disabled film critics!” is a post from The Daily Beast (published on Dec. 22, 2017), entitled ‘The Greatest Showman’ Fails Disabled Audiences by Masking P.T. Barnum’s Monstrous Past, by Kristen Lopez. The post is a critique of the film The Greatest Showman as yet another example of Hollywood films airbrushing and revising history, presumably in order to make a buck. Lopez pulls no punches right out of the gate. She writes, “For many, P.T. Barnum is the equivalent of Robert E. Lee, a colorful character who made a career exploiting and dehumanizing those with disabilities…. He [Barnum] may have coined the term ‘show business,’ according to him, but he also brought the freak show into popular parlance.” (Lopez, 2017)  She takes the film to task again and again for its shameless reinvention of Barnum as a gentle, good guy.  Despite all the Barnum character’s false nobleness in the film, “Barnum never thinks to factor in the able-bodied privilege that allowed him to profit off other people’s differences.” (Lopez, 2017)  In addressing the musical theme of the film, the showstopper “This Is Me” (a song about self-acceptance), Lopez ends her review with the same punch she began with “…until Hollywood is ready to accurately represent those with different abilities, ‘This Is Me’ is nothing but an empty promise knitted on a sampler.” (Lopez, 2017) Strong words that needed to be said to illuminate the specious portrayal of P.T. Barnum.

All the articles and posts reviewed in this paper most closely align with the progressive models of disability, especially the minority/civil rights model. These articles and posts were primarily written by people with disabilities and/or people in the field of disability rights. In analyzing these articles and posts, the author of this paper has seen the importance of using the narrative models of disability, especially the progressive ones, while noting that sometimes, a post or article may require the use of multiple models to accurately describe it.

In conclusion, the world of web blogging and Facebook postings has become a lively, dynamic arena for the disability community, in both sophisticated and personal ways.  They provide access to a broad range of information, many forums for people with disabilities to speak for themselves, and a means to reach a community of like individuals.  Their role in disability advocacy is strong and has potential for enormous growth and impact on American society.

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