Calling colleges and universities

I am reaching out to St. Louis colleges and universities to chat with them about my research on the lived experiences of college students with disabilities.

This research will help us serve our campus community better!

If you’re interested in having me come speak with faculty, staff, and/or students on your campus, let me know!

Wikipedia is Therapy

Ruf des Phönix Erster Sog, Bild von Magdalena Maya Ben 2007
Ruf des Phönix Erster Sog, Bild von Magdalena Maya Ben 2007Licensed under Creative Commons

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.

After reading WP:NOTTHERAPY, in the See also section is an essay titled Wikipedia is not a convalescent center. Included is the text:

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 defense: Experiences of College Students with Disabilities

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.

Cookies, Candy, and Qualitative Research

Thursday, July 21 at 1 pm CT have my public defense of my dissertation: An exploration of the lived experiences of college students with disabilities (my dissertation abstract).

All are welcome to attend, or email me if you’d like the link to the live cast. If you come in person, you’ll be able to enjoy homemade cookies. Otherwise, you’ll have to BYOC.

An exploration of the lived experiences of college students with disabilities

Below is my dissertation abstract in its current form. Enjoy and please do let me know if you’d like a copy of the final draft!

This dissertation presents a phenomenological study of the experiences of students with disabilities during higher education. This study began due to the lack of literature available regarding the experiences of students with disabilities regarding their pursuit of higher education. The research focus grew from the enrollment rate inconsistencies between students with and without disabilities in higher education. The rate of enrollment of students with disabilities in higher education is significantly lower than the enrollment of students without disabilities. The reasons behind this are complex. It is affected by individual student’s choice to not disclose his or her disability, the transition preparation of the students with disabilities, and the experiences of students with disabilities at higher education institutions. Much of the literature focuses on data about students with disabilities, but little engages students with disabilities in the research.

A qualitative research design provided rich data. Data collected from individual semi-structured interviews was analyzed for themes and sub-themes. The interviews were correlated with observations and observer notes. Nine students with disabilities attending a Midwestern private higher education institution provided nearly nine hours of dialogue, observations, and notes to analyze. From this data, the following themes were extracted and listed here in order of strength, from least to greatest: identity (self-advocacy, self-worth), accommodations (academic life, support from others), social interaction, assumptions and stigma, and barriers. Specific observations or quotes were used to illustrate the existence of themes and sub-themes.

The illustrations developed from the data the student participants provided aided in designing the concluding arguments. The conclusion of the study invites administrators at the Midwestern higher education institution to examine the data analysis. Some of the student participants provided suggestions for improvement in the accommodation and support of students with disabilities. Additional suggestions for improvement were developed from the data. While the information provided from the student participants aided in appreciating the experiences of students with disabilities, more research is needed regarding the experiences of students with disabilities in higher education.

Disability is a Social Construct

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.