As a person of short stature who is part of a community that, within popular culture, has been the punchline of jokes simply because of our physical difference, I am leery of cameras. Perhaps because they buy into the stereotypical message of dwarfs as comic relief, strangers sometimes take my picture. I do not know what the strangers do with my photos, but I am guessing they do not hang them next the Van Gogh and Renoir posters in their room. I imagine the anxiety I feel around cameras is shared by other dwarfs. With that in mind, when our pictures are taken, especially if they are intended to be shared with a wide audience, we like to know exactly for what the photo will be used and we want some sort of say over how the photo is staged.
About five years ago, a few stories broke about Preimplantation Genetic Diagnosis, a procedure that allows one to screen out which fertilized eggs will be implanted into a woman's uterus. The stories reported that some clinics that perform the procedure would refuse to follow the wishes of dwarfs who might choose to use the procedure to purposely give birth to a dwarf baby. In the wake of the story, media outlets scrambled to find a dwarf couple who had either undergone the procedure or who planned to use the procedure to have a dwarf baby. As far as I know, no couple fitting that profile was found by the U.S. media, but the Associated Press did write a story about a dwarf couple in New Jersey. The couple had tried to have a baby for a long time. They did conceive once, but sadly the baby was born with double-dominance. When a child carries the dominant gene from the father and the mother, the baby rarely lives for very long. After trying for so long to have a child, I believe the couple was considering pursuing procedures that would enable the couple to deliver a healthy dwarf baby. The Associated Press found the couple, who agreed to tell their story.
Again, I can only assume, but I imagine the couple spent a long time debating whether or not to do a story. The wife has experience in public relations and media work, and so must know that, if one is the subject of a story, no matter how carefully you craft a message, no matter how cautious you are with information, the intentions of the subject are subordinate to the vision of the reporter and the media outlet. The couple must have known this, but agreed to the story because of the reputation of the outlet and because they believed the issue and the message to be important. Similarly, they probably dedicated a lot of thought to whether or not they would agree to a photo for the story. In the end, in order to share their story and agree to a photo, the couple must have trusted the reporter and the outlet, and must have trusted the story and the photo would be used for a purpose in which they believed.
A few days ago, news emerged that the couple is suing a tabloid television program for using the Associated Press photo without the couple's permission in a satiric piece making fun of reality television. In addition to using the photo without the couple's permission, the tabloid program also created doctored images of the couple for the piece.
News of the complaint doesn't help my anxiety over photos. This case sends a message that, if our photo is taken, it doesn't matter how reputable the source might be, it doesn't matter what the photo is intended for, it could wind up somewhere as a visual gag.
But I am also hopeful because of the complaint. And I am proud of the couple that filed the complaint. This complaint will bring to the public eye the privacy issues that all people of short stature, who are guilty of nothing but trying to live a regular life, contend with on a regular basis. And perhaps, the complaint will give us a tool with which to fight back against violators of privacy.