By Noelle Cassier and Andrew Oliver, Durham, North Carolina, 2017.
This project is a graphical user interface designed to educate users about the costs of life with a mental diagnosis, not only in terms of physiological symptoms, but also the time and money that are spent.
In creating this project, the authors ran into problems of format as well as content. They created a video, “Activism Project: Reviewing a A User Interface Describing Different Diagnoses,” detailing the challenges of making their project fully accessible. The authors also co-wrote an article called “A Note on the Difficulty of Representing Psychiatric Diagnoses.” The article outlines the intended message of the project, and critiques the unintended problematic assumptions that could arise from viewing it. Ultimately, from the challenges these authors faced, the lesson they learned about the problem of representation was more memorable than most.
For instructions on downloading the user interface, scroll to the bottom of this page.
Written transcript for video available here.
A Note on the Difficulty of Representing Psychiatric Diagnoses
Adequately representing disability is a far more difficult task than most people realize. Unless a person has experienced a specific set of symptoms directly, it is very difficult for someone else to make that person understand just what he or she is experiencing. The medical frameworks in which we often view mental difference in our culture stemmed from white middle class parents attempting to “differentiate their children [with learning disabilities] from low-achieving low-income and minority children,” yet the categorization of different diagnoses has turned into detrimental generalizations (Sleeter). Humanity is quick to throw a one or two-worded label on a person’s conditions and instruct him or her on how to go about “fixing” himself/herself. However, instead of the concrete name of a diagnosis helping to clarify and quantify the experiences and diagnoses for the person who has these conditions, the person diagnosed often conforms to the label he or she has been given. The use of such concrete labels begins to “create kinds of people that in a certain sense did not exist before,” as they attempt to fit into the role that the world assigns to them (Hacking).
New ideas, such as the Spoon Theory and the Sick Woman Theory, work to bring awareness to the internal aspect of those bearing the labels of different diagnoses. Instead of seeing people with disabilities as nothing more than the labels with which they are classified, both theories force those who have not experienced living with these conditions to stop and think about the generalizations and assumptions they hold. As noted in Spoon Theory, most people truly have no idea what it feels like to be forced to ration out energy for the day, deciding between something as simple as making food or cleaning up afterwards (Miserandino). Such basic tasks are not usually given a second thought, yet for some, this constant monitoring of every aspect of life is required. Through the interface that we created, we realized that the reduced amount of information makes it hard for users to see how one must “ration spoons of energy” (Miserandino). Our interface placed more emphasis on the medical particularities of each diagnosis instead of how the people with these conditions function daily.
Similarly, most people never experience a world where society constantly tells you there is something wrong with you that requires fixing (Hedva). Hedva proudly tells the world that “you don’t need to be fixed, my queens – it’s the world that needs the fixing” (Hedva). Though the intention is never purposeful, by simply placing labels on human beings, we reduce them to objects that need to be altered instead of people with real feelings and emotions. We realized that with our interface, the use of these labels was being promoted. Showing enormous complexity in such an interactive tool is impossible, yet we realized that focusing on averages imposes a concept of normalcy for each diagnosis that only further supports the generalization of those with that diagnosis.
When we originally brainstormed ideas for our project, we realized that we wanted a finished product that would educate our audience on different mental diagnoses. The goal of our project was to create an interactive graphical user interface that would display six different mental diagnoses with the monetary commitment, financial commitment, and time commitment of each respective diagnoses, as well as notable people who have persevered through each specific diagnosis. However, after we finished the project, we realized through user feedback that our interface was not giving off the message we had hoped. The source of our sources was not easily apparent, and the information provided in our interface ended up being somewhat detrimental. Our interface takes the DSM at face value, with no history on different names of these diseases. Unfortunately, the different labels caused viewers to compare different diagnoses and think of certain diagnoses as “worse” than others. We realized during the exhibition that even though most audience members were not verbally comparing the different diagnoses as they clicked from one to the next, they might be doing just that internally. As a group, we realized that we need to find a way for our interface to accurately portray the information we chose to put forth without distinctly defining and comparing aspects of mental health.
Furthermore, we realized that through including mainly famous people in our interface, we perpetuated the stigmatization of people with these labels who have not achieved the same degree of success or fame. Setting such a high expectation for each diagnosis by portraying famous people who have “overcome” the diagnoses only discourages those who do not feel that they are also at this point. Looking forward, we want to keep a 1:1 ratio of human and medical voices by adding more ordinary people into our examples. We plan on doing this using informal online forums to give a voice to these members of society as well. We also realized that the perpetuation of a reductive male/female gender binary may appear detrimental and ignorant to certain viewers who do not necessarily identify with solely one or the other, and we plan on addressing this issue in further versions.
Finally, one of our largest problems was distribution. For audience feedback before the exhibit, we successfully sent our project as an attached file through an email to six other computers, where they downloaded software, then downloaded and ran our project on their own computer. However, this does take a fair amount of time, and differs from our original goal of embedding our interface into the course’s website. We realized that without a way to ensure our project’s availability to all viewers, we lose a large portion of the audience we had hoped to reach.
Overall, no completely “healthy” person will ever be able to truly understand all the challenges that those with different mental diagnoses endure daily, yet we hope that through this analysis as well as our revisions, our project might eventually help others to understand. Our project had many flaws that we are looking to correct for the future, as we look to fight against concrete classification and comparison. Though failure is never a fun, we recognize that it is a crucial part of learning, and we are grateful for the opportunity to evaluate our own work. From this experience, we have learned a great deal about the detriments of a medical label and the toll that a single word can take on a person’s outlook of his or her own life, and we want our project to support the idea that each person’s struggle is just as valid as anyone else’s. We hope that through our critical analysis skills in both our article and video, as well as the changes that we will continue to make to the interface, that our project will be one that we are proud to show others.
Hacking, Ian. “Making Up People.” London Review of Books. 28.16 (2006): 23-26. Web. 20 Apr. 2017.
Hedva, Johanna. “Sick Woman Theory.” Mask Magazine. N.p., 19 Jan. 2016. Web. 20 Apr. 2017.
Miserandino, Christine. “The Spoon Theory.” But You Don’t Look Sick? N.p., 26 Apr. 2013. Web. 20 Apr. 2017.
Sleeter, Christine E. “Why Is There Learning Disabilities? A Critical Analysis of the Birth of the Field in Its Social Context.” Disability Studies Quarterly 30.2 (2010): 210-37. DSQ. Web. 20 Apr. 2017.
This video demonstrates the revised user interface:
Follow the steps below to try the user interface on your own computer!
- Open this link here.
- Click the button that says “Download Python 3.6.1” and open the downloaded file. An install window will pop up. Follow the necessary set up steps. Close the installer.
- Open “Terminal.” If you are on a Mac, clicking the magnifying glass in the upper right-hand corner and type in “Terminal”.
- Paste “sudo curl -L -o script1.txt http://bit.ly/2pkzLs3 | sudo chmod 0755 script1.txt | ./script1.txt” without the quotation marks. Hit Enter.
- Full screen the window and enjoy!
If you are having problems with the steps, feel free to watch this video here of the following of these steps on a MacBook Pro. Below are a more detailed set of steps.
- Open this link here.
- Click the button that says “Download Python 3.6.1”.
- Open the downloaded file. An install window will pop up. Follow the necessary set up steps. Close the installer.
- Search your computer for “Terminal”. If you are on a Mac, clicking the magnifying glass in the upper right-hand corner and type in “Terminal”.
- Open Terminal.
- Paste “cd ../../Applications/Python\ 3.6/”. Hit enter.
- Next, paste “sudo pip3 install simpleaudio” into your terminal. Your computer will ask for your login password if you have one set up. Type your password and hit enter.
- Open this link here. Click the “Download” button in the right corner. Click “Direct Download”. This folder will now be in your downloads.
- Drag this file to your Desktop. Open the application “Finder”.
- In the menu bar on the top left of your screen, there will be a list of tabs including “File, Edit, etc). Click on “Go” then “Computer” and you will see “Macintosh HD”
- Drag the file “Activism Project” to “Macintosh HD”
- Open the attached folder and right click the file that says “act_project.py”. Click “Open With” and then click “IDLE.app (3.6.1)
- Click the tab that says “Run” then click to option that says “Run Module”
- Two windows will open. One includes our interface.
- Click this window and make it full screen.
- Follow the instructions on the screen and enjoy!