I am very excited to announce I was selected to be a visiting scholar with San Francisco State University. The goal of my position is to use the library resources available to me through SFSU to improve content on Wikipedia regarding disability. This includes art, culture, history, and so much more. The directors at the Longmore Institute already created a list of potential topics for me to examine.
Here’s the information about the role:
Historian and activist Paul K. Longmore founded the Institute on Disability at SFSU in 1996. When he passed away in 2010, the university created an endowment for the Institute and renamed it in his honor. It undertakes projects that work to challenge prevailing notions and stereotypes of disability by showcasing disabled people’s strength, ingenuity, and originality. Its public education and cultural events connect the Bay Area’s vibrant disability communities and the general public with faculty and students at SF State to fight disability stigma with disability culture.
Already I have so much to add! I am using my old pal, Scrivener, to collect the information before I make edits. I love Scrivener’s functions, which allow me to search my literature research notes, which will ultimately allow me to improve numerous articles with each source I find.
Oh! Did you know you can edit Wikipedia too? It not only helps build and improve the free, quality knowledge available on the Internet, it’s a great free time activity too – addictive, and habit-forming, but [generally] not harmful to your health. 🙂 Feel free to see what I’m up to on Wikipedia.
Voting is a right in the United States for adult citizens. But it doesn’t seem that way. Politicians are complaining about allowing more access to voters by providing polling options next to college campuses. Donald Trump is encouraging his supporters to go to polling places “make sure it’s on the up and up” because “large scale voter fraud happening on and before election day.” Who do you think these supporters will be watching? People who look like them? I highly doubt it. They’ll be watching people who don’t look like them, including people with disabilities.
People with disabilities endure access denial when people do not consider their needs. Voting is no different. Physical building access poses challenges for people with disabilities, even if the building meets the requirements of the law. Ramps could be too steep, pavement cracked, and doors locked or at challenging angles and widths. Do the people implementing the accessibility devices actually test them beforehand? Somehow I doubt it.
Societal stigma perpetuates the idea that people with disabilities are less than their peer without disabilities. Voting brings in another dynamic. These are major decisions being made. Poll workers take it upon themselves to question people with disabilities about their competence and ability to vote. This proves the societal understanding of disability is still desperately outdated.
One in six voters in the U.S. have a disability. Regularly are people with disabilities prevented from voting due to various factors. Would you like your rights questioned or even blocked? Help protect the rights of all voters.
Connections between people over the Internet offer a large possibility for anonymity. On the Internet, nobody knows you’re a dog. Or more likely, no one knows about your gender, race, religion, or disability. For people with disabilities, the Internet is full of havens where they can live without stigma. Wikipedia may just be one of those havens.
I was toying around with the idea of investigating the lived experiences of people with disabilities who contribute to Wikipedia. Now I am even more intrigued after reading the article titled Wikipedia is not Therapy by Andrew McMillen.
I clicked on some of the links in the article, starting with the English Wikipedia essay Wikipedia is not therapy (WP:NOTTHERAPY). Essays on English Wikipedia are written by Wikipedia editors. The information written is usually opinion-based or advice pertaining to Wikipedia. The essays do not require approval, or widespread agreement; this one, however, is used frequently.
This WP:NOTTHERAPY is sometimes referenced in edit disputes or other community discourse about inappropriate behavior. It is to insinuate the receiving party has a mental disability and tell them that Wikipedia is not a place for their inappropriate behavior. It is used to diminish their value and discredit any further discussion of their merits.
Similar to the casual way in which society uses “crazy” and “nuts,” this suggests inappropriate behavior and disability have a causal link in the minds of some in the community.
Let me pause and explain. There are two views of disability: the medial model and the social model.
The medical model frames the disability as a deficiency of the person, which must be cured, and places the emphasis on the perceived disease or deficiency. The medical model offers complications for people with disabilities as it frames them as “abnormal,” “subnormal,” or “special.” The focus on curing or managing their disabilities in order to be more “normal” further communicates to society that a disability is something to be removed and even ashamed of.
The social model of disability views disability as part of the natural environment. The social model focuses on how society is developed around people without disabilities or the “able-bodied.” This model came out of the recognition that society’s practices of discrimination, exclusion of people with disabilities, and inclusion of those without disabilities is a form of oppression. Society has told people who have disabilities “how to be disabled.”
The WP:NOTTHERAPY message, on the whole, is not offensive. Yet it contains language that embodies society’s stigmatized view of disability. The longevity and usefulness of WP:NOTTHERAPY, suggest a great number of people in the community subscribe to the medical model of disability.
Here are a few examples of language in WP:NOTTHERAPY:
These problems may be caused by personal immaturity, an inability to properly apply Wikipedia’s policies, poor social skills, or other reasons.
This sentence, connected with the title, implies that people who cause problems need therapy.
The phrase “Wikipedia is not therapy” should not be taken to imply that editors with mental disorders are incapable of making constructive contributions to Wikipedia…
Why then did the editors who wrote this essay choose this title? There has been discussion on the talk page about the essay title. The self-proclaimed inventor of the concept said, “In its ‘voting is not therapy’ incarnation, it was useful as a sneer, and it was meant as a sneer.” This suggests is it acceptable to use assumptions about one’s state of mental health as a sneer. Just like using the word “retarded” does not make it okay because you didn’t mean “retarded” but just “stupid.”
In short, Wikipedia offers users the chance to practice being sensible, sane, and productive, but one’s psychological state is not an acceptable excuse for disrupting the encyclopedia.
Why does mental health need to be in this conversation? If you can’t make sensible and productive contributions, don’t edit right now. I just said the same thing without being insulting. Punch up, not down.
Wikipedia is not a convalescent center for people with poor communication skills…It should also be noted that lack of communication skills may be indicative of a deficit in actual functioning, such as a disorder.
This could also be indicative of people who are newbies, young, or non-native English speakers.
Further on in “Wikipedia is not a convalescent center,” there is reference to trolling and “behaviors that are disruptive both for the encyclopedic work and the project’s social community.” Essay titles and content like this damage both the encyclopedic work and the project’s social community.
The title could be: Wikipedia is not a tabloid. Or Wikipedia is not a toilet.
But it isn’t.
The language chosen in both essays is a jab at people with disabilities. People with disabilities are valued contributors to Wikipedia and there are people without disabilities who are destructive to Wikipedia. Having a disability should not be used to diminish contributors, nor should ‘disability’ and similar language be used as insults.
Going back to McMillen’s article…
McMillen’s article makes some great points. People on Wikipedia are valued contributors. Some people may have disabilities, but that does not diminish their value.
…it can reveal some of the worst aspects of human behavior, including abuse, harassment, and threats of physical violence.
Exposing yourself on the Internet can be challenging. Just like any relationship, you’re opening yourself up to all experiences. This could include appreciation for contributions, constructive criticism, or the bile of heinous behavior.
…mental health carries a powerful stigma, and that the more open we are about it, the less it weighs all of us down.
By suggesting people who are destructive or people with whom you are feuding have a mental disability, this only serves to perpetuate the stigmatized perspective of disability held by society. The more open we are about mental disabilities and receiving help for these disabilities, the more acceptable it will become in society, meaning more people will get the therapy they need to live personally fulfilling lives – and others will be more supportive when learning someone has a disability. No empathetic person wants to see their fellow human distressed, so why would anyone want to perpetuate the stigma which only serves to oppress people with disabilities?
I found in my reading for my dissertation people do not always disclose their disabilities. The failure to disclose could indicate people with disabilities do not want to be judged, invoke stigma about disability, or be treated differently than the people without disabilities. People with disabilities would rather risk struggling academically rather than face the stigma, stereotyping, and status loss society places on people with disabilities.
When you get a bunch of passionate people together, emotions can run high and interactions can become less than cordial. This is the time when WP:NOTTHERAPY is used. Unintentionally, this mentality might be serving to only further alienate current and potential contributors.
While McMillen’s article does have the intent to bring more attention to the potentially distressing effects of being an active contributor, I do disagree with one point:
Depending on the reader, its tone might be perceived as just snarky or dismissive enough to rub a distressed editor the wrong way.
I am not distressed or someone with a disability, yet I perceive the WP:NOTTHERAPY as “snarky and dismissive.” It is inappropriate. Maybe this has to do with my overall empathy. Or my hope to not exclude a valuable population of contributors. Or maybe others agree with me and it’s time to take that essay down and decommission its function in disputes.
This emergency response system was established in 2010 by Philippe Beaudette…
I am glad there is a response system in place to support community members in distress. The fear of invoking stigma can prevent people with disabilities from pursuing support. WP:NOTTHERAPY only helps to further the stigma associated with mental disabilities and seeking therapy. Many people could benefit from therapy, but choose to not seek therapy. This illustrates the personal impact of societal stigmatization of disability.
Having a mental, or an “invisible,” disability does not lessen the effect of stigmatized actions and remarks on the person. Disabilities, both physical and “invisible,” can affect people in various ways. Conflating poor behavior with people with disabilities does not help “write an encyclopedia,” but stifles the much needed diversity in the community.
Wikipedia is therapy…
I argue that contributing to Wikipedia is therapy. No, no activity can replace actual therapy, but there are benefits to contributing. After a stressful day, I feel reinvigorated because I’m having an effect on the available free knowledge. I feel excited immersing myself in solving content puzzles. I laugh, saying, “How’d I get here?” after going down rabbit hole after rabbit hole of interesting content. After a day of fighting the good fight for education equality, this knowledge-nerd is rejuvenated by family, food, and Wikipedia.
I know the benefits for me, but the benefits and reasons for contributing are different for everyone. Veronica Erb wrote about Editing Wikipedia as self-care activism. Emily Temple-Wood’s positive punishment plan. Jake Orlowitz wrote about his Journey of a Wikipedian. I’d love to hear from other active contributors about their journey.
I am actually really curious to find out about the people with disabilities who are contributors on Wikipedia. If you’d like to collaborate on this investigation of the lived experiences of contributors with disabilities on Wikipedia, email me.
Make sure you do you.
If you are experiencing feelings that affect your enjoyment of daily life or negatively affect your daily activities, please do seek counseling. No other activity can replace seeing a qualified counselor. The counselor can provide you with resources and tools so you can enjoy the one life you live.
If you are experiencing thoughts of suicide, know the suicide is preventable and you must get immediate help. Help can be found at suicide.org.
My dissertation is titled An Exploration of the Lived Experiences of College Students with Disabilities. Some of my friends and colleagues attended to hear the great research. Now you get to watch it and share it with your friends and colleagues! The SlideShare is below as well.
Currently I am listening to the audiobook of Year of Yes by Shonda Rhimes (she’s the writer behind Grey’s Anatomy, Scandal, awesome TV, etc.).
Yesterday Shonda read a chapter and basically posed the question for readers to ask themselves “Who am I?”
This is the second time I have heard that phrase this week, in suggestion for the listener to ask themselves. The first time, I sat and thought, “Wow. I don’t know. I’m nobody.”
Today I am writing my methodology chapter for my research proposal for my dissertation. I read my “Personal Truths” section I wrote some months ago. I got teary eyed.
While I won’t bore you with the whole bit, here is a section of my “Personal Truths.”
This is who I am:
The researcher recognizes several personal truths as they pertain to this research study. The researcher has a great desire for all individuals to obtain at least a four-year degree from a higher education institution. The researcher feels the knowledge a student may draw from their time at a higher education institution is expansive and can be transformative. She recognizes how higher education affects many aspects of one’s life, including emotional, financial, intellectual through to their individual world view.
Education should be a right and not a privilege is also a personal truth of the researcher. While not everyone desires a higher education, higher education should be an available opportunity for those who desire it. The researcher firmly subscribes to the theories of Howard Gardner, which indicates intelligence may manifest in various forms and not only in the traditional sense. She feels strongly that individuals in society should not be discounted for their difference from the traditional. Society comprises individuals, yet society ostracizes anyone different from the herd.
This is my passion.
It makes me smile. It makes me giddy. It makes me cry. It makes me talk so inspiringly to other people about education that they themselves are motivated to do something.
A few weeks ago I wrote about why many of us will likely fail in our careers, and why we should all follow our passion. Do something you feel this passionate about, and we might just save the world.
Language has a profound impact on how we perceive ourselves and how others perceive us. I know some deliberately use inappropriate language to hurt others, but others I am sure unknowingly use inappropriate language. Make the choice today to examine your language, change it, and encourage others to do so too!
In writing my research proposal and working toward collecting my data for my dissertation, I have been reading quite a bit on disability identity theory (Gibson is the only one that really exists). I was really rather bummed by this when I started my literature review, but now I think it makes a great deal of sense.
You see, disability is a social construct. Society has told people who have disabilities how to be disabled. People with disabilities react to the stimuli society provides, and based upon this information, their identity develops.
The This American Life episode “Batman” came as I had unearthed another interesting bit of identity theory. People react upon perception. Society perceives people with disabilities as less than, and the people with disabilities perceive themselves perhaps not as less than, but as limited. Why? Society says so.
But, society is wrong.
Our bodies are amazing machines. People with disabilities may do things differently than the rest of society. But is that difference less than? And by association is that person less than?
Listen to the This American Life episode. I hope it changes your expectations and thoughts about disability.
Whew! I’m home now from the 2014 ACPA Convention in Indianapolis and I’m exhausted. The past 4 days were packed with learning, making new connections, and catching up with old friends. What a great time we all had collaborating and sharing our progress and research on topics. I was fortunate enough to share my dissertation research with the ACPA community. I was overwhelmed by the attendance in my session and very appreciative of those choosing to spend time in my session. Overall we had a positive conversation about making students with disabilities feel more welcome on our campuses.
it is good to get the information out and more people in on the conversation.
In the session I asked fellow student affairs folks to consider some action items to tackle when they got to their home campus. I am invigorated by what the people plan to do!
Also, at the closing session today, I received some very poignant words from Brené Brown:
If you are not in the arena and also getting your ass kicked, I am not open to your feedback.
If someone else is in the game with you, listen and appreciate what they have to say, good and bad. If they’re not contributing to the knowledge at large, challenge them to step up to contribute, but ultimately appreciate the risk you took in sharing knowledge and dismiss their feedback.
I encourage you all to get out there, research, tackle those complex situations and always keep Brené’s wise words in minds.
I’m terribly excited about my presentation in about an hour. I am not nervous at all – only very excited to share this information I have found with others in hopes they will be able to change the outcome for students with disabilities on their respective campuses. I cannot wait for the whole dissertation to be finished so I can share it with the whole world! Well, the part of the world willing to read it.
Hello all from ACPA! I have neglected my site for the most part due to dissertation (well, except when snapping pics of the cats while procrastinating on said dissertation). I’m just going to recap some of the energy from the first day:
Good discussion about being Flawsome.
Take it in stride and own up to your mistakes. It’s better in the end, and frankly people like you better if you’re ok with being human.
Met lots of fun people at CelebrACPA.
Music was a bit loud for networking, but we worked it out. 🙂 excited to be more involved with my interest areas and MoCPA.
Safe Spaces or Zones for students with Autism Spectrum Disorders
These spaces are devoid of harsh environmental stimuli (fluorescent lighting, loud noises, etc.) and complete with a staff member trained on how to assist students who might need them if they are over stimulated or just overwhelmed by something on campus. Great retreat spaces for students to process the experience they just had.
Masculinity and Disability
Great discussion not only about masculinity and disability but about many things: being human, accepting of others and their mistakes, appreciating people for moving in a different path than we would choose. Finally, discussing the common practice of “removing” people with disability from gender.
Now, I’m off to a coffee and to check out my room for my presentation tomorrow! If you’re here, come to Marriott Indiana G at 10:30 April 1. Students with Disabilities Persisting Through Higher Education: Their Perspective.
