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A person with SMA II is not identical to his diagnosis and cannot be characterized by physical measurements and answers in a questionnaire alone.
The journalistic method to put a human face to the diagnosis is the personal portrait. It examines the person and his existence by constructing a story on the basis of dialogue, observation, interpretation and narrative.
The personal portrait gives us insight by addressing both our intellect and emotions through the things the interviewed person says and the way he says them. It also depicts scenes from the everyday life and describes the environment of the interviewed person.
In a personal portrait, the interviewee and the most important things in his life are presented to the public. This makes the person vulnerable in that he becomes subject to other people’s judgment; and it makes him strong because his personal experiences become common ground.
In the course of the next six months, a series of personal portraits with SMA II patients will accompany the many fact-based data, painting a picture of the life lived behind the facts and figures.
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