Wednesday, August 19, 2009

Public Reactions to "Sarah's Story"

Prize4Life was very pleased to welcome Sarah Ezekiel’s guest post last week. Sarah shared her perspectives on the making of “Sarah’s Story”, a public service announcement about ALS sponsored by the UK-based MND Association.

The ad was banned from British television several weeks ago by watchdog organization Clearcast, deemed too ‘shocking’ for public consumption. A heated controversy ensued regarding what should and should not be aired publicly. British newspaper the Telegraph published a story on the debate, and the BBC subsequently hosted a discussion between Sarah, the MND Association, and Clearcast, which can be found here. The Jewish Chronicle also recently covered the story: read it here.

We saw a very interesting tension emerge during this debate—that is, there seemed to be several debates occurring simultaneously.

The ALS community sees and feels (rightfully, we believe), that ALS is a brutal disease, that awareness can help lead to a cure, and that the pain inflicted by this disease is not ‘too shocking’ to be public, especially in comparison to other things that are publicly aired without controversy (such as rape, violence, warfare, etc). The ALS community argues in favor of airing the video, and frames its argument as a question of illness; we are discussing the clip in terms of ALS itself.

The second debate, it seems, is about the general standards which television employs to vet its content. The question is not about ALS specifically, but rather about whether there are images which are too controversial to be made public.

We see these conversations occurring on different levels—in effect, missing each other.

Let’s look at some of the comments on the Telegraph article. One woman objects to the video as inflicting unnecessary pain: “Why is it that some people believe they have some sort of God-given right to inflict a display of their misery on others? Just because you are suffering does not entitle you to illustrate your pain on TV or anywhere else.”

Another rebuts: “It is amazing that society doesn't allow something as strong as this message to be seen. We see acts of violence on TV daily. If I don't like what I'm seeing on TV, I change the channel. Simple. If diseases are publicized more, then there is the potential for raising more money to try and find a cure.”

One writer opposes the presentation of the woman in the ad, seeing it as falsified and dramatized. He writes: “I think the ‘advert’ is inappropriate. The woman is not Sarah Ezekiel but a model, Philippa Jonson. Sexy high heels and skimpy skirt all coming off. I do not understand why she is depicted as climbing backwards up a wall...Inappropriate. It fails to show what patience and endurance can achieve.”

An ALS patient responds, and in her response she connects the images in the video with a reality of living with ALS: “I was diagnosed with MND in October 2008. Since last August I have fallen over 10 times. Twice I have fallen against the wall and it was with such force that it felt exactly like I was being slammed against it, as it is shown in the ad. If you are falling over at speed and you encounter a hard surface, with no chance of stopping yourself, then that's how it feels...When a person with MND falls there is no chance to break the fall, your hands, arms and legs crumple beneath you and contact with the floor or other hard or sharp surface is always very shocking, there is nothing in your body that seems to act as shock absorbers...I can't crawl very well either, so in this respect too, the film is very, very accurate.”

It is clear in this exchange that the discussant are talking about very different things; the first writer objects to the sexualization and dramatization of the woman in the advertisement, while the ALS patient clearly sees the debate as a question of awareness regarding the real-life effects of a specific disease.

Another writer rebukes: “as for those commentators who think that the ad contains some reference to ‘sex’ or ‘sexy’, what sick minds you must have.”

At Prize4Life, we believe that the misunderstanding highlighted in these selected comments and in the larger discussion represents a fundamental lack of awareness about ALS’ effects on the body, and about the dehumanizing reality which the disease imposes upon its patients. For example, the connections between bared limbs and the physical effects of ALS on a patient in such a dramatization would be obvious if ALS were more familiar.

Following the media frenzy about the decision, Clearcast rejected the MND Association’s offer to air the video only after 10 pm and not following a family-oriented program. Clearcast noted, however, that it would allow the film to air if the footage of Sarah’s deformed limbs were cut. We find this point to be one of the most disturbing of the entire debate. Per Clearcasts’ decision, this is not a question of sexuality, provocation, or even the showing of someone else’s pain. It is a question of exhibiting ‘deformity’, something which the organization is unwilling to do.

Regarding this, another contributor observes: “It is incredibly disturbing for me that “[Clearcast] would allow the film if the scenes showing Sarah's deformed limbs were cut”--the fact that it is deemed necessary to hide images from the public eye of limbs that are ‘abnormal’ in some way only reinforces the marginalization that people with disabilities experience in our society. There are many people who find it uncomfortable to see images like this, but hiding them away only serves to reinforce the ignorance that feeds discrimination.”

We believe that Sarah’s story is about ALS, and that it should be discussed in terms of ALS, and that they key to creating this connection is through increased awareness of the disease. We support the MND Association’s decision to air this piece, and we hope that the conversation around it continues to foster increased understanding, exchange of ideas and, someday soon, a cure.

by Meghan Kallman


  1. If that PSA is the most offensive thing that a person sees on television, then that person clearly doesn't have cable (or Two-and-a-Half Men reruns for the kids to watch after dinner).

    Perhaps it's time for the general public to get a more realistic picture of ALS so that society squirms enough to see that we have an urgent problem.

    Every May the MDA and ALSA feature nice vignettes of courageous and outstanding PALS. I feel strongly that every May thereafter they should feature some "how are they doing and where are they now" updates to those vignettes. There would be some startling changes and sadness, but that's the ALS that the public needs to understand.

    I often wonder what would have happened if the public had seen Lou Gehrig's decline after his farewell. Would that have startled the world into some aggressive action?

    My vote is for ALS organizations to come up with creative ways to add some reality to the message, and the reality of ALS has a brutal side.

    I'm glad the the controversy around Sarah's story has increased the noise level about ALS... much as the mannequins have.

    My 2 cents fwtw.

  2. ALS in our world is a Crisis. The Chinese have said for years that a Crisis starts with Danger and ends in Opportunity. "Sarah's Story" is that opportunity for the ALS world. Some people want to censor controversy, but the church has learned that controversy fills pews and collection plates.
    Politicians would like to censor controversy for their own purified causes. Sen. Tom Coburn tried that with CBS and the airing of "Schindler's List". In fact, he was the same Senator that put the ALS Registry Act on a Hold. Level headed opposition brought to the public "Schindler's List" and the much needed ALS Registry Act.
    ALS Awareness is key to a Cure.
    Sign me up!