Tuesday, August 11, 2009

Guest writer Sarah Ezekiel blogs on "Sarah's Story" controversy

Prize4Life is pleased to welcome guest blogger Sarah Ezekiel! Sarah shares with us her perspectives on the making of “Sarah’s Story”, an advertisement 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.

Prize4Life believes that the issue of ALS awareness is crucial; it affects the entire ALS community and has tremendous implications for research. Stay tuned for a subsequent blog post dedicated to the public reactions which have surrounded the controversy. Sarah shares her views below.

Everything was pretty straightforward for me until the age of 34. I was happily married with a beautiful little girl and pregnant with my much longed for second child. In February 2000, I noticed some weakness in my left arm and my speech was slurring. By April 2000, I had a definite diagnosis of ALS or Motor Neurone Disease (MND) as it’s called in the UK.

It happened so quickly; I was absolutely terrified. My marriage collapsed as I became progressively disabled. I couldn't physically care for my children or myself anymore, and spiraled into deep depression. I'm now a single, disabled parent who is totally dependant on caregivers for everything. I never expected my life to change so tragically. I often think that it's more painful for my family and friends than it is for me.

I am now 43 and have survived much longer than most ALS sufferers. I have lost almost all my mobility, as well as my speech. I use a program called E Z Keys on my laptop, which enables me to communicate and access the internet. Technology has saved me!

When I was asked to appear in “Sarah's Story”, the ALS advertisement that has been the subject of so much controversy, I didn't hesitate. Donna Cresswell from the MND Association showed me the story boards and explained more about the film. I liked the concept and felt that it was important for the public to see.

On the 3rd of July 2008, I found myself in a studio in Central London. My first scene was the end one, sitting in the huge wheelchair. I was positioned and had to keep very still, and when that finished, I was told that was it.

I asked whether I had just come there to sit in a wheelchair, feeling pretty upset. I asked the director whether I could try some other scenes because I wanted to show the deterioration that ALS causes to the body. I kept insisting until he agreed. I went home feeling pleased and amazed by the dedication and kindness of the creatives, director, actress and the crew, who gave their time for free.

The advertisement that we worked so hard on was recently banned from television by the British watchdog, Clearcast. They told us that it was “too shocking” for people to see.

I was, and remain, very disappointed with this decision. There are many shocking adverts being shown on British TV, so why can’t viewers witness the ravaging effect of a real disease on a real sufferer? That, the television censors have decided, is too disturbing for the public to handle.

Sarah’s Story is shocking but so is ALS. The advert is 90 seconds of powerful, disturbing imagery. It opens as a young woman walks into a room and is confronted by a wheelchair. As she gazes questioningly at it, a steel door behind her slams shut. Her body is immediately smashed against a wall. Struggling for breath, she is tossed around the room like a rag doll and left thrashing on the floor. Her clothes are stripped off by an unseen force, and her limbs, twisted and thin, convulse uncontrollably. In the final scene, she sits slumped in the wheelchair, unable to speak or move.

However, Clearcast claims that “even good-cause advertising is capable of causing widespread general offense.”

I feel that a graphic representation is the only way to ensure that more people are made aware of the horrific physical and emotional impact of ALS. The ban makes me feel as though ALS sufferers must be hidden away. Making the video was tough but so very, very worthwhile. I am extremely proud of it. And I'm afraid the only way to relay the true horror of ALS is in a shockingly vivid way. In fact, the film doesn't really convey the reality of this disease. The reality is far, far worse.

Just after being diagnosed, I spent three years wishing I were dead. Now, I spend every day being thankful that I am not. I am grateful for every moment with my children, although I do wish I could do more with them. My greatest wish is to be around to see them grow up. I am not ashamed to have ALS; I am just different now. I strongly believe that more awareness of ALS can help lead to a cure, and I will continue trying to raise awareness for as long as possible.

You can watch Sarah’s Story here http://www.sarahsstory.org.uk/, and I can be contacted via my website http://www.sarahezekiel.com.

1 comment:

  1. Sarah - Thank you so much for making the advertising spot and for raising awareness about ALS.

    I agree that the advertisement is graphic and truly horrifying to watch - but not nearly as bad as watching it happen to a friend. Nothing compares to seeing what ALS does to someone you know and love. Even though it takes place over months or years, rather than seconds, it is no less terrible to witness.

    We all calmly watch trailers for tv shows or movies that show people doing violence to each other, yet when it comes to a disease that so far we still do not know how to stop, we somehow apply a different, more puritanical standard.

    Perhaps it is because we can all convince ourselves that the tv shows and movies are not real and so they are less scary...while the reality of this disease is something much harder to push away and ignore.

    Which, of course, is why I wish it could still be shown.

    Thank you for your bravery, Sarah.