Whose Story, Whose Eyes: Form and the Ethics of Representing Disability in Documentary

  

胡然 HU RAN

 

Research Question：

To what extent does documentary form determine whether disabled people are subjects of their own experiences rather than objects interpreted for a non-disabled audience?
 

Introduction

When I thought about how I make documentaries, I started to feel less certain. It became clear that even if a filmmaker means well, she or he is still the one making crucial decisions about how others are represented. They decide where the camera goes, what the audience hears, which words stay in the cut and most importantly what kind of story gets to be told. Their power shapes the narrative, no matter how good their intentions are.

“Are we supposed to do that?”

In films focusing on disability, this issue becomes especially obvious. Stella Young, a disability activist, criticized the way people with disabilities are sometimes depicted mainly to create an emotional reaction among viewers without disabilities, and she used the term “inspiration porn” to label this tendency. Moreover, the disability-rights idea known as “Nothing About Us Without Us” puts the questions of who holds authority and who takes part at the center of how people are shown. James I. Charlton connects this idea with the larger disability rights movement, highlighting its belief that people with disabilities should have the power to make decisions about their lives. Because of this, this paper compares The Reason I Jump (2020) by Jerry Rothwell and Crip Camp: A Disability Revolution (2020) by Nicole Newnham and Jim LeBrecht. The Reason I Jump tries to create a feeling of sensory experience through sound, editing and camera work. At the same time, Crip Camp uses a lot of archival footage and includes people with disabilities who were part of the history shown in the film. (Young, 2014; Charlton, 1998)

In my opinion, ethical representation depends more on how much control the form gives participants over the story and sensory experience than just on whether a documentary has good intentions. Also it might not always be possible to give up control in every situation. When a movie tries to help people express their own thoughts, making a movie still involves decisions about what to include and how to put it all together. So the ethical question is about how the director handles the difference between someone who lives through an experience and the person trying to show that experience, not just whether the creator speaks for people with disabilities.

 

The Reason I Jump: Can a Film Represent an Experience It Cannot Have?

How can a filmmaker represent an experience that cannot be captured directly by a camera?

Based on Naoki Higashida’s writing, this documentary uses the personal accounts of autistic individuals who do not use spoken language across different parts of the world. A camera can record what a person does, but it cannot directly capture what that person perceives. Thus, the audience could remain in a position of merely observing them from afar. (Rothwell, 2020a; Higashida, 2013)

Instead, the movie repeatedly tries to direct our gaze in the same direction as the people on screen.

According to Rothwell, Higashida’s accounts of being overwhelmed by sensory input led the filmmakers to see sound as a necessary part of bringing the written work to the screen. During production, the team used surround and binaural microphones, recording several different ways of hearing at each location. In addition, editor David Charap arranged scenes so that, at certain moments, the audio guided the cutting instead of simply being added alongside the visual content. (Rothwell, 2020b)

In this case, however, these auditory elements can make the act of watching feel less certain. A sequence based on Higashida’s account of how rain is perceived is an especially clear example.

According to Rothwell, this sequence combines sounds of rain with other noises such as paper and tapping, showing how sound, memory, and recognition can operate together. At that moment, we lose our usual confidence in what we are hearing. (Rothwell, 2021)

Rothwell’s approach uses the structure of the movie to create a mild sense of unease in viewers about the way they perceive things. Moreover, sound moves beyond simply carrying information and starts to work as a kind of viewpoint within the film.

The tight shots and unusually detailed, sometimes overwhelming layers of sound keep our attention on separate sensory details instead of immediately showing us the whole setting. But this does not mean the audience can suddenly know exactly what an autistic person experiences. Rothwell seems to recognize this limit in the way the film is made. He explains that the team wanted to step back from neurotypical ways of seeing, and to avoid a common documentary approach where autistic people who do not use spoken language are shown mainly through their parents. (Rothwell, 2021)

These individuals are not shown as people who need to be explained by someone else. At the same time, the question remains: who constructed this sense of inner experience for the audience? Although the movie tries to move away from a neurotypical viewpoint, the audience still experiences that shift through choices made during filming and editing. Ben and Emma’s scenes make this question more concrete. They use letterboards and typing to communicate. Watching words take shape through these methods is different from having someone else explain what their behavior means. Yet viewers encounter only the exchanges the film chooses to show, in the order and at the pace allowed by the edit. Their words are present, but the filmmaker still shapes how those words reach us. (Rothwell, 2020a; Rothwell, 2020c)

This creates a contradiction. To convey a subjective experience that takes place within the mind, a documentary has to construct that experience through deliberate choices. Moreover, the more strongly a director shapes that inner state, the greater the chance that the filmmaker begins to speak on behalf of the person whose inner world the movie is trying to treat with care.

Thus, The Reason I Jump does not fully resolve the ethical question of who gets to speak for autistic people. Instead, the way the film is constructed makes that problem visible.
 

Crip Camp: What Changes When the Subject Holds the Camera?

What changes when the people being represented have already taken part in creating the images that represent them?

The documentary Crip Camp tells the story of Camp Jened, a summer camp for teenagers with disabilities, and traces the links between people from the camp and the disability-rights movement that followed. It is also important that Jim LeBrecht, one of the film’s co-directors, attended Camp Jened in his youth. In the early 1970s, members of the People’s Video Theater used handheld cameras to record life at the camp. As LeBrecht recalled, the group once placed a camera in his hands so that he could give viewers a tour of the site and record what he saw. Decades later, Newnham began looking for the footage that had survived. (Newnham and LeBrecht, 2020; Ward, 2020)

In Crip Camp, the camera is literally placed in the hands of a person with a disability who is taking part in the event.

This difference connects back to “Nothing About Us Without Us”. Charlton argues that control matters deeply in the disability-rights movement because people with disabilities have historically had decisions made for them by others. In documentary, control is not only about legal or political decisions. It can be something as basic as who gets to decide where we look. (Charlton, 1998)

It changes the gaze.

The footage does not try to recreate Camp Jened through neat modern images. It is shaky, immediate, and already inside the place it is filming. Instead of simply telling us that the campers formed a community, the archival footage lets us watch that community actually work. (Newnham and LeBrecht, 2020). Still, holding the camera is only one part of authorship. The campers helped shape some of the footage recorded in the 1970s, while Crip Camp was assembled decades later. Newnham, LeBrecht and their editors chose which moments to keep, how long to show them, and how to connect camp life to the wider disability-rights movement. The original footage carries the campers’ perspectives, but its place in the final story depends on decisions made long after it was filmed. (Newnham and LeBrecht, 2020; Hullfish, 2020)

In one group discussion preserved in the archive, Nancy Rosenblum speaks while the other campers stay quiet and listen. The scene is uncomfortable at first because her words can be difficult for the viewer to understand. But the people around her do not rush her. They wait. After a while, another camper, Steve Hofmann, steps in and helps others understand what she is saying. (Newnham and LeBrecht, 2020)

The film could make this easier for us. It could simply cut faster. But doing that would also put the viewer’s comfort above Rosenblum’s own pace.

That changes the usual hierarchy. The edit does not rush Rosenblum just to make her immediately easy for us to understand. We have to enter a community where waiting without irritation is already normal. The question of whose needs the film serves therefore goes beyond editing pace. What Rosenblum says makes the scene more important. She is asking for the right to privacy, including the freedom to be alone when she chooses. The people around her take the time to understand someone asking for a right that others might take for granted. Her words also raise a question beyond the scene: if making someone visible can help them be heard, who decides how much of their life should be available to watch? (Newnham and LeBrecht, 2020; Brice, 2023)

Young’s argument pushes this further. When the lives of people with disabilities are mainly used to create feelings in a non-disabled viewer, the people on screen are once again made to serve the needs of the people watching them. (Young, 2014)

The people shown laugh together, take part in disagreements, build connections with one another, make plans for collective action, and hold differing views. The film also connects disability with group belonging and the capacity for political action instead of simplifying it into a matter of private misfortune. (Newnham and LeBrecht, 2020)

The same concern with power appears in the film’s narration. According to Newnham, an earlier cut used more voice-over from LeBrecht without showing him on screen. The filmmakers later reduced it because his voice started to feel like an authority telling viewers what to think, especially when LeBrecht himself had not been present for every historical event shown. Instead, the film often places him in conversation with other people on screen. (Siebum, 2022)

LeBrecht’s own experience gives him an important place in the story. But it does not automatically give him the right to speak for the lived realities of every other person with a disability. The film still has to decide when his perspective belongs, and when someone else should speak.
 

Form, Truth and the Limits of Representation

In terms of self-authorship, Crip Camp comes closer to that model. LeBrecht was both a filmmaker and a former camper, while the archival material came from inside the community, with some of the footage recorded by people who took part directly. Because of this, the film reduces the gap between the person whose experience is being represented and the person constructing its representation. (Newnham and LeBrecht, 2020)

The harder problem is inner experience. You cannot simply hand a perceptual experience to a camera. Rothwell therefore uses sound, close visual details and editing to build a film version that comes close to the accounts of Higashida and the people in the documentary. That version is constructed rather than simply found. But if the film refused to construct anything at all, viewers would once again be left watching autistic individuals who do not use speech only from the outside. (Rothwell, 2020a; Rothwell, 2020b). Yet the effects of these choices also depend on who is watching. The Reason I Jump offered relaxed screenings with lower sound levels, partially raised house lights, and warnings before intense moments. Those warnings were developed with input from autistic people. The detailed sound that asks a non-autistic viewer to rethink ordinary perception might also be difficult for someone with sensory sensitivities to experience. This adds another limit to what documentary form can achieve by itself. The conditions of viewing also shape who can engage with the film. 

This raises the question of who is allowed to take part in creating meaning. In a documentary, even deciding not to alter a certain frame is still a choice made by the filmmaker. A documentary cannot completely give up authorship, because making one already involves deciding what is allowed to appear on screen.

This also means that “Nothing About Us Without Us” should not be read as a simple rule that films about disability can only be made by directors with disabilities. The harder question is who gets to shape meaning. Are people with disabilities treated as raw content for someone else’s interpretation, or does the way they see things actively shape how that interpretation is built? Charlton’s discussion of the slogan focuses on self-direction and resistance to paternalistic control, not simply on being visible or present. That distinction changed how I think about what is right and wrong in documentary filmmaking. (Charlton, 1998)

A beautiful image can still turn its subject into an object. The same can happen with a moving story if it makes a life too simple. Even a director who cares deeply about the person being filmed can end up speaking for them while trying to protect them.
 

Conclusion

Comparing The Reason I Jump and Crip Camp brought me back to one question: who is given the power to decide how a story is seen by an audience?

Through sound and fragmented visual focus, The Reason I Jump tries to shift viewers from simply looking at something to taking in how it might be perceived. At the same time, the film shows the limit of this attempt: another person’s inner life can never be fully reconstructed through a director’s choices. (Rothwell, 2020a; Rothwell, 2020b)

The gap between how disabled people are shown and how they show themselves is reduced through archival footage, the fact that one of the directors also lives with a disability, and scenes where camp attendees directly shape what the camera captures. There are also moments when viewers are asked to adjust themselves to the people being filmed, instead of the footage being cut so that those people fit a form the audience can immediately accept. (Newnham and LeBrecht, 2020)

In both films, the filmmaker cannot be removed from the act of representation. The ethical distinction therefore lies in how the director uses that unavoidable power.

Before this investigation, I thought considerate representation was mainly about the message a director intended to communicate. After studying these films, I also began to see how important it is to recognize when not to speak on behalf of another person.

The camera always sees.

The question is whose.

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