Post-Week 12/More notes on simulations

I forgot to post some of these videos earlier, partially because they make me too mad to be articulate and partially because I can’t actually watch them in full. It became a trend a few years ago to make “autism simulation” videos, where someone essentially tries to duplicate what sensory overload feels like for an autistic person. There’s no equivalent for most other disabilities but this is in part because traditional simulation activities tend to focus on physical disabilities rather than anything intellectual, developmental, or mental. At Sziget over the summer, where I first encountered Hungary’s interest in disability simulations, most of the games focused on vision impairments or using a wheelchair. These were the typical sort of activities: use a blindfold and cane and navigate an area, use a wheelchair and tr to go up ramps or around tight corners. There was a small tented area that had other types of simulation games, focusing on disabilities like autism. I don’t remember that much about what the games were, since I was trying to avoid engaging with anyone from these organizations, but one involved putting on headphones to have “distracting sounds” and trying to play a simple card game. Most autism or sensory simulations emphasize one sense over all others – often sound, since it’s easier to control in person than vision.

The three videos here are made by autistic people but each handles sound or visual input differently. I’ve been thinking a lot about the videos over the past few days, since they try to simulate disability in a different way than the Invisible Exhibition. I don’t agree with what any of them depict but I think they are able to side-step some of the ethical issues I have had with other films and they are subverting that by using self-representation to explain how each creator sees (or hears) and experiences the world. I was working on this before class today so I wasn’t planning to incorporate any of the ethical discussion from that but I feel like it might fit in here. Selma (I hope I’m spelling her name right) mentioned that she doesn’t like any representations of Roma communities in movies, and I’m guessing she feels more sensitive to this topic than other possible issues. I feel the same way about disability representation: I don’t like any depictions of disabilities in movies or documentaries, I am always hyper-aware of this (like in the Queen of Silence trailer, which immediately raised my hackles), and I will always question the ethics in disability representations. I seem to have beliefs regarding ethics that are different than many in the class, but it’s most evident when disability is in the frame.

1. This is made by Carly Fleischmann (an autistic blogger) and her family, who were trying to mimic what it feels like for Carly to be in a busy cafe. It feels a lot like a scene in a movie because of the hyper-focus on individual objects or actions in the cafe, and the way that it can emphasize particular sounds and movements over all of the background.

2. This was the first simulation video I ever saw, also made by an autistic person. It was the subject of a debate on Facebook between a few of my friends, who were trying to balance the fact that this isn’t how they experience the world and the video seems very superficial and inaccurate, while understanding that each person experiences sensory information differently. It uses sound differently than the first video, since this person basically turned up the volume on all of the ambient noise to make it sound very intrusive.

3. Also from an autistic creator, this one doesn’t address sound or auditory overload – there appears to be no manipulation whatsoever to the sounds of the scenery and the emphasis here is on the visual: playing with the light and filters, moving around constantly and pointing the camera at different things on the street. This one also uses a direct contrast between how non-autistic people experience a walk down the street and how this person feels when they walk for a block.

Response for Week 12

Once my video is finished, I’ll formalize some of my thoughts from last week and this week into an actual description of the project. After I read Sarah Pink’s book, I read one of the books she referenced: Laura Marks’ The Skin of the Film. When I was reading this book, I was thinking about some of the feedback I got from people in class and how everyone seemed to dislike that my project lacked a visual component. As I said then, I think having any sort of images or text would negate what I’m trying to do and distort how people experience the sounds. Some of the parts I quoted from Pink and Marks are relevant here but when I was reading Marks in full, I noticed that she also addresses how people tend to fixate and prioritize the visual above all other forms of sensory input. Much like Pink argued for an awareness of the researcher’s own sensory bias, Marks agrees that in order to “understand someone else’s sensory organization, I must acknowledge the bluntness of my sensory instruments” (Marks, p. 230). She may be stronger with one sense than another but her subjects might not be, or the social knowledge they get from their senses might be different, and an awareness of this is necessary.

One of Marks’ major arguments is that the senses are linked to memory as a source of individual and social knowledge. Vision, or one sense evoking another, makes us “reflect that memory may be encoded in touch, sound, perhaps smell, more than in vision.” (Marks, p. 129). This is partially my aim with the sound recordings, to use the sounds of an object to trigger these memories and associate sounds with tactile and visual information. Marks argues that when we don’t have the visual input, we can get information that isn’t visual at all – by not seeing what I touch or describe, and when the audience can only hear what I am doing, there is a different type of information being shared. For Marks, vision is the sense more separate from the body but also that which so concretely ties us to our own bodies. She quotes Merleau-Ponty: “Vision, by virtue of being a distance sense, allows us to ‘flatter ourselves that we constitute the world’; whereas tactile experience ‘adheres to the surface of our body; we cannot unfold it before us, and it never quite becomes an object. It is not I who touch, it is my body'” (Marks, p. 149) Marks believes that we need to separate ourselves from our bodies in order to be able to function – we can’t experience all of our senses at their full potential because we would simply not survive.

What is the potential for individual or social knowledge from the senses, particularly without vision? I think that relying on audio to convey information about the tour and the different rooms within is essential. There is no way to replicate the tour experience by adding a visual component since there is none for me or the guide during the process of recording. Providing additional information as images or words puts less pressure on the audio to convey the same meanings or evoke the same memories, particularly since during the tour, the sounds and feel of things are what you use to visually remember what an object is. I’m still confident that using only audio is the best fit for the project, but I found it interesting that people appeared uncomfortable with this idea. Marks thinks that Western cultures over-emphasize and over-rely on the visual (what she terms ocularcentrism), which results in our need to disconnect our senses from the body and under-prioritize our other senses. I’m not entirely convinced by this but I was immediately aware that people didn’t know how to react to seeing a “visual anthropology” project that wasn’t visual.

Response for Week 11

(I apologize in advance for the length of this. I was rereading a book about sensory ethnography and marked several passages to return to. This was immediately after my first recording at the field site. I am planning to adapt parts of this for my final description of my project.)

“Sensory ethnography is certainly not just another route in an increasingly fragmented map of approaches to ethnographic practice. Rather, it is a critical methodology which… departs from the classic observational approach… to insist that ethnography is a reflexive and experiential process through which understanding, knowing, and (academic) knowledge are produced. (Pink, p. 8)

This past Wednesday, I brought a pile of recording equipment to the Invisible Exhibition to take a tour, with the hope that I could record the sounds of the tour to share with the class (and a more distant hope that this sound recording would mimic the experience of being on the tour). On my previous visit, the tour had been maybe 20 minutes; the English-speaking guide was unexpectedly sick so I had a Hungarian guide and the receptionist as translator. It was awkward and the two barely spoke, so the receptionist regularly walked into things or led me the wrong way. This tour was the complete opposite: more than an hour long, with a very chatty (often bordering on flirtatious) guide who regularly paused the tour to engage me in discussion. I have absolutely no idea how to cut this to a short video, or what the best way is to explain why there are only sounds to represent a tour that frequently engages 3 senses.

In preparing for my thesis, I’ve been reading a lot about ethnomethodology, and I expanded that reading list to include a few books on sensory ethnography. One of the books that has been the most helpful in guiding this process has been Sarah Pink’s Doing Sensory Ethnography, which references many of the names from class (like MacDougall and friends) while explaining many of the key themes in the field. One of the first ideas from Pink is that in order to prepare for sensory research, the researcher must be aware of their sensory biases. She writes, “It involves the researcher self-consciously and reflexively attending to the senses throughout the research process…” (Pink, p. 10) Given that my tour guide was blind, and the exhibition is designed to make me empathize with “the blind experience,” I assumed my sightedness was my bias. I think now that it’s more complicated than this. I have my own sensory issues – a mix of over- and under-sensitivities as well as general processing issues, always in competition and directly tied to my own disabilities – and to make a sensory ethnography means that I must address that beyond the differences in how my guide and I experience the tour, I am not experiencing it the same as any other visitor. Therefore, my final video will not replicate how I personally experience the tour, because it’s impossible to describe what it feels like for me to take the tour. I was better prepared for my second tour than the first but, unlike Pink’s suggestion, I had not been able to “apprehend one’s own sensory situatedness” (Pink, p. 51)

Later in the book, Pink references that not only do sensory ethnographers “observe and document other peoples’ sensory categories and behaviors, but seek routes through which to develop experience-based empathetic understandings of what others might be experiencing and knowing” (Pink, p. 65) I was initially hesitant to take on this project with the Invisible Exhibition, largely because I couldn’t understand how it would translate to sensory ethnography without sight and touch. In addition, this quote from Pink is essentially the mission statement of the Invisible Exhibition, and it’s something that I personally disagree with. Within the disabled community, there is a general consensus that simulations do not work. This consensus can be summarized as such: simulations provide negative and superficial understandings of disability that result in pity or frustration. I do not think you can understand what it means to be blind by losing your sight for 30 minutes and walking into furniture. It took me a long time to understand this project as trying to replicate the experience of taking the tour, separate from trying to replicate the experience of being blind.

This goal is ultimately closest a soundscape or a soundwalk rather than a sensory ethnography project that involves both visual and audial. Pink suggests that rather than simply filming observations or interviews, this use of the camera “might provide a route into the more complex multisensoriality of the experiences, activities, and events we might be investigating. They do not record touch, taste, smell, or emotion in the same way that they record images and sounds. Indeed, in this sense they provide an incomplete record. However, an understanding of the senses as essentially interconnected suggests how (audio)visual images and recordings can evoke, or invite memories of the multisensoriality of the research encounter” (Pink, p. 101). To explain this, Pink describes a time that her and McDougall were in his garden, and they discussed his idea that seeing is a way of touching that goes beyond the physical sensation itself to a deeper and more connected experience. This relies upon assumptions, most of which McDougall himself addresses: “Our film experience relies upon our assuming the existence of a parallel sensory experience in others” (MacDougall, p. 53). This idea is echoed by Marks, who references the way that commercial films use images to evoke sensorial memories, what she terms narrative identification:

“Characters are shown eating, making love, and so forth, and we viewers identify with their activity. We salivate or become aroused on verbal and visual cue. Beyond this it is common for cinema to evoke sense experience through intersensory links: sounds may evoke textures, sights may evoke smells (rising steam or smoke evokes smells of fire, incense, or cooking” (Marks, p. 213).

Sounds may evoke textures. This is the most I can hope for with my film: that the sound of me rustling the papery layers of an onion and naming it as such will remind people what an onion feels like, smells like, or even tastes like. This could also be possible for other parts of the recording, where the sounds of me touching walls and different objects can encourage the audience to remember what these things feel like and look like. Sound ethnography is ultimately a “representational practice,” in that I can only hope to evoke the memory of certain things without visual cues (Pink, p. 141).


MacDougall, David. Transcultural Cinema. New Jersey: Princeton University Press, 1998.

Marks, Laura. The Skin of the Film. North Carolina: Duke University Press, 2000.

Pink, Sarah. Doing Sensory Ethnography. California: SAGE Publications Inc, 2009.

Response for Week 10

It’s hard to believe that there are 3 weeks left for classes – just 3 more weeks to finish this project and then I have to face my thesis again. I am fortunately using the same site for my thesis as I am for this class, which will make the transition easier and (hopefully) give me better insight by the end of the year. I haven’t written anything about the final project besides that short paragraph a couple of weeks ago, so this will be a better reflection on what’s happening.

One of the field sites for my thesis is the Invisible Exhibition in Budapest, where people are led through a pitch-black series of rooms by a blind guide in order to “understand what life is like without one of the senses that provides us the most information, to live without your sight”. That’s their goal, as stated on the website. While my thesis will focus on how disabled knowledge and identity are experienced by visitors through the simulations, as well as what assumptions the simulations make about embodiment, I thought for Visual Anthropology it would be more interesting to try and recreate the experience of being in the tour. My vision for this was a simple video with no visuals: just a black screen and the audio playing. The audio would be me interacting with the tour guide (and maybe other visitors) as well as the sounds of being in the exhibition. When you go through the different rooms, the floor and walls are various textures, there are things to open and touch, and other objects with which to interact. My first time in the exhibition, I was tapping against each texture to understand what it was, as well as opening cabinets and touching everything to guess where I was. I thought that recording these sounds would provide a sound-focused approach to sensory ethnography, and maybe I could recreate the experience of being in the dark.

I have had some unexpected difficulties with this: when I initially took the tour, I wasn’t allowed to bring in a basic voice recorder because it had a tiny red light when it was recording. Phones and other things that might emit light aren’t allowed in the tour, so I had to leave the recorder behind. I had originally rigged the recorder with string and tape so that I could hang it from my neck and be hands-free in the exhibition, another requirement. I met with Gloria this week to figure out a solution: what would be entirely hands-free, sensitive enough to pick up the textures and sounds, and doesn’t have any lights? After a little negotiating with the exhibition, we agreed that I could use a lavalier mic, hooked onto my sleeve, and I could attach it to a receiver that would be under my shirt. The transmitter would go in a cross-body bag that I will tuck behind me so it doesn’t interfere with the tour and I can still have my hands free to protect myself and interact with the objects. I would keep the mic on my sleeve because the sounds my hands make are the priority over any voices, and this way I can keep the mic closest to any noises.

One of the other topics that hasn’t fully come up in class yet is the idea of sharing your research and final product with your subjects. A lot of people seem hesitant about this but I didn’t have this option: the non-negotiable part of researching at the exhibition was that I was fully transparent in everything I did. The site director is present at my initial interviews (or other staff members are checking on me), these interviews have to take place during work hours and in the building, and the final product has to be shared with the director. The owners aren’t particularly involved with the exhibition, so the business manager is in charge of daily operations and is my main contact. When we discussed the idea of recording sounds a few times, she finally agreed with the stipulation that I would share these recordings with her before doing anything with them. There was similar concern when I first approached her about my thesis: I think that there’s always the concern about bad press or that I’m secretly writing an expose or something similar. I’m not planning on sneaking in questions during the tour or anything like that, so I don’t mind sharing the recordings, but it makes me even more self-conscious during the research process: not only are my words recorded (and later transcribed by me), but they also will be referenced in my thesis, shared in the video with the class, and now the director will also hear everything I do. It’s a strange type of pressure but if building this level of trust is the trade-off for access, I’ll make it work.

Response for Week 9

After watching Chronique d’un Été and listening to the discussion afterward, I realized that while a lot of the subjects had found parts artificial or “the truest scene,” I was more interested in analyzing the emotional manipulation from Rouch and Morin. This was something that had come up in Forest of Bliss as well – the way that Gardner added shots of dead bodies (human or animal) in the streets or floating in the water, just to shock the viewer and remind them that they’re here to learn something about death. In Gardner’s work, it was all the more stark when these shots were mixed in with slow and steady shots of the river or the flowers, and 5-minute shots of someone praying or bathing themselves. It’s jarring in the very beginning of Forest of Bliss, to see the river and the children and the sky, and then cut to a group of dogs fighting and trying to tear apart another dog. This unsettling feeling never went away and Gardner reinforced my discomfort: if a dog or a cow was shown playing with the flowers, you can be sure that one would be shown dead shortly after. I realize this is something about the “circle or life” or whatever claim Gardner and his fans would make, but all it does is make me feel sick, and wishing that the film would end already.

The manipulation in Rouch and Morin’s film, however, was more about the conversations and staging rather than framing, for example. They intentionally waited until halfway through the movie, when Marceline is at a table surrounded by the filmmakers and two black men (who aren’t described as much beyond “Africans”) to drop the news that Marceline was Jewish, had been deported, and that her tattoo, which was shown close-up several times for the first time in the film, was from a camp. Of course, this was immediately after they asked leading questions about if Marceline could be attracted to black men, to the obvious discomfort of their guests. Following this scene, Marceline is shown walking around Place de la Concorde, accompanied by a dramatic voice-over where she reminisces about her father’s deportation. This happens a few other times in the movie, where someone unsubtly adds a key piece of information and everything changes. Occasionally it happens with the actual framing too, although this generally just suggests that something will soon go wrong, even if it doesn’t. Towards the end, when the family is rock climbing on vacation, and the father is barking orders at his daughter to rappel correctly while she gets upset, the way Rouch and Morin shot this suggests that at any moment, she’ll fall to injury or death. In reality, she’s a few feet off the ground and her mother can soon reach up to grab her.

There was an interview on NPR a few days ago that brought up these same issues. A cinematographer who worked on both Selma and A Most Violent Year, Bradford Young discussed depictions of violence and how he set up shots. He mentions the speed of a shot in particular, as “a way of giving us a different rendition of the moment.” In a scene where a church is bombed and four girls are killed, Young used slow motion to add to the emotions while playing with the balance of making it both grotesque and beautiful. Later on, he puts the camera on an actor’s body so that when she’s tackled to the ground, the viewer is put in her position. He says, “We didn’t want you to be able to let go. We didn’t want you to be able to walk away, or turn your head away. We wanted to indict the audience. We wanted the audience to know that we all, in some way and somehow, have contributed to the social atmosphere.” Throughout the movie, he keeps the camera close to the actor playing Martin Luther King, Jr. so that the audience can change perspectives, and build an emotional connection with the subjects. This is emotional manipulation as well: building an intense relationship between Dr. King and the viewer forces the audience to confront reality as soon as the film ends. In the same way, putting the viewer in the position of protestors or the police asks them to hold that role. Young mentions specifically he wanted viewers to feel this responsibility and carry that with them outside of the theatre. I haven’t seen Selma yet, mostly because I keep hoping that it’ll eventually come to Budapest (doubtful), but I’m interested to see what sort of affect this has when I can watch the film. It’s also a good contrast with the types of manipulation from the other filmmakers mentioned, since the goal is a sense of social responsibility and interest in furthering change.

NPR Interview with Bradford Young:

Response for Week 8

Watching the introduction to Titicut Follies, I immediately had concerns about privacy and consent. I could write an entire paper on ethical issues in working with disabled subjects (and it’s something I often think about, given my thesis and general research interests), but I want to focus on one example. In combination with Gandhi’s Children, and maybe other films we’ve seen, the role of nudity exemplifies these ethical concerns. Throughout the clip from Titicut Follies, the inmates (prisoners? patients? Without narration, it’s difficult to know their exact role in the institution) are shown during strip searches and are regularly shown naked. This is generally in a group setting, a large room full of clothed guards checking the naked patients and their clothing before allowing them to be dressed again. Presumably Wiseman had consent from each person before filming the contrast in power and clothing, but given that the film was later considered a violation of privacy and dignity, I doubt that each patient was aware that they would repeatedly be shown fully nude on screen (in a film that has been seen by many). Similarly, in Gandhi’s Children, one of the young boys is shown undressing and showering. Generally in the US when one works with children, the permission of both the child and their parent is required, but since the boy was at a shelter, likely an administrator took responsibility.

I’m reminded of a case of bullying in the US last summer, where a disabled boy was tricked by classmates and was covered in feces (he was told that he’d be participating in an Ice Bucket Challenge video). Claiming that she wanted to draw attention (media, legal, or otherwise), his mother posted the video online and it was immediately shared internationally. Even though his mother was meant to be responsible for protecting her child, in her quest for justice she forgot that this image is now permanently associated with her child and she has robbed him of his dignity and privacy by sharing it online.

In some sense, Forest of Bliss can stand in opposition. Adult men are shown occasionally getting dressed, wearing thin wet clothing, or naked (generally in the context of bathing or swimming). Given that they are adults, and there is less of an explicit power dynamic than if they were children or institutionalized patients, they likely have full control over whether or not they are filmed and how or when. However, as with Titicut Follies and Gandhi’s Children, I can’t assume that someone agreed to be filmed whenever the director saw fit and knew that their image would be saved forever and seen by a large international audience for decades. I have no idea how to negotiate this problem, especially since there are frequently cases where someone agrees to be filmed, likes the end result, and then immediately changes their mind once the film becomes more popular (as the school principal did in Etre et Avoir). I will not further the indignities against the patients in Titicut Follies by presuming incompetence, because I think the issue of exposure and power is more relevant than questioning whether a patient understood what the cameras signified.

My ethical concerns go beyond this, however. We had a discussion in the Research Methods class this week regarding researchers who go into the field, complete their research, and then leave – never to return or speak to their informants again. The consensus was that this type of researcher is a bad person. Beyond the fact that Wiseman had no contact with the institution after he completed his research, the choices made in filming also raised ethical issues for me. Shooting a film to be intentionally grotesque and horrifying – the shots of force feeding a patient, of kicking or dragging the patients, the nudity, forcing patients to take medicine, and the verbal abuse – is wrong. Wiseman leaves the patients as nameless, identity-less, and often voice-less victims (and after editing, encouraging questions of their competence) by showing abstract or blurry shots, close-ups of body parts or other types of images. Regardless of consent, there is an obligation to leave the dignity of your subjects intact. Naming the film after the talent show put on by inmates trivializes the rest of the events shown, it’s all just part of the prison/hospital life in this framing. I have no interest in watching the rest of the film, as the introductory clip was upsetting enough, so it is possible that it all ends well or that some amazing message and results came out of the process, but I find this unlikely. There was a review in the Village View that referred to the film as “powerfully presenting the human condition,” but unless the human condition is an abusive lack of empathy (on the part of the guards or the filmmaker, you pick), the reviews that I read seem to miss the true issues here. Another, in Life Magazine, emphasized how the film represented “a society’s treatment of the least of its citizens” without addressing how the filmmaker himself treated his fellow citizens. I’m of course more sensitive to ethical issues regarding research with disabled subjects, and those in marginalized positions under others in power, but there are too many significant problems with Titicut Follies for me to view it as anything but terrible.

Reviews of Titicut Follies, on the Zipporah Films, Inc. website:

Thoughts about the final project

Over the past two weeks, I’ve been struggling to think of a topic for the final project. I know that I am not interested in a video-based project, partially because I don’t feel experienced enough with video nor do I have enough available time to teach myself and spend hours editing the video. I am also naturally drawn to photography, since I have more of a background with cameras and I find it less awkward to add photography into a research environment than video.

Ideally, I would focus on something disability-related – either adjacent to my thesis or something similar. Thesis-centric photography would be difficult however, since the room with the exhibition is pitch black (and therefore impossible to document without night vision or something else). When I went for my first tour, I wasn’t allowed to bring a digital recorder in because it had a very small red light on when it was recording. This would leave me with the first room in the exhibition – where people sit in lit rooms with blindfolds on, experimenting with braille, different adapted tools and toys. Since this part occurs before the tour, it’s also where the visitors meet their guide and discuss their concerns or interest in taking the tour. For most, this is often their first time meeting someone disabled. While it would be technically possible to document these interactions, I worry about the invasiveness of documenting these interactions. I am not sure where to go from here but I am definitely interested in pursing a final project related to my thesis research