When working with the media, keep the following tips in mind:
There is no such thing as "off the record." "Off the record" means that you do not want a particular statement or fact to be quoted or printed. Make sure to clarify with the reporters whether they will honor this request. If so, let them know what is "off the record" prior to speaking. In general, only use "off the record" with reporters with whom you have developed trust and rapport. Of course, the safest policy to follow is if there is any language or content which you do not want published or aired, do not say it.
Prepare in advance. If possible, obtain a list of questions to allow time to prepare your answers ahead of the actual interview.
Notify the reporter of reasonable special needs accommodations. Do you need a sign language interpreter? Would it be helpful if information is put on tape or in large print or Braille? Will personal attendants and/or assistance with childcare be necessary? Will transportation and/or assistance with travel expense be needed?
Shape your basic take-home message. Think about how to communicate this in a few sentences.
Prepare simple, sound bite, talking-points before the interview. Then keep your answers short, to the point, and free of technical jargon. Answer the question in your first statement, and then elaborate without losing the core point you are trying to make or going on too long. Do not be vague or evasive.
Be prepared to explain your condition and the genetics related to it. Use simple and clear language for this. Assume that the media or the public knows nothing about your condition or about genetics in general.
Frame your message using accurate and positive language. Avoid words with negative, value-laden, or hurtful stereotypes (such as references to a "victim suffering from a tragic genetic defect"). Use people-first language that is respectful and affirmative rather than offensive.
Stick to the message you want to communicate. Do not allow the interviewer to veer you away from your main purpose. Do not answer questions that you don't want to answer. Simply restate your message, answering the question you had wanted to be asked, choosing your words carefully.
Remember—you can say "no" to a reporter. You don't have to answer every question or talk about particular topics. But beware that the reporter might use your negative responses in a way you don't like and can't control.
Do not become defensive. Even if the interviewer becomes argumentative, it is best to remain congenial and firm.
Always speak for yourself and from your own experience. Be careful not to speak for someone else in your family or organization on personal matters and controversial topics—they can and should speak for themselves.
Understand the risks of going public. There can be possible implications for an individual's future and family. You can never take back what you say. When speaking publicly about a particular condition or "risk status," you may also indirectly be providing personal information about other family members. People may stop you on the street after seeing you on television or reading about you and your family in the newspaper. Think about giving up anonymity before there's no turning back.
Ask to review your quotes prior to their use. They may not agree—if they don't, you may want to be extra careful in your responses or decline the interview. Also, if photographs are to be used, you can ask to see the final selection.
Distortions of comments and views do happen. Despite your best efforts before, during and after the interview, be prepared for distortions and inaccuracies. But you can even use them as a springboard to get your accurate message repeated. Use your best diplomatic skills in telling the reporter what was correct and what was not.
Learn all about the news organizations and reporters in your community. Find out who covers what. Do they have a scientific or medical background? What other medical stories have they done?
Keep an organizational scrapbook. Get permission to take a "behind the scenes" photo for your newsletter.
Acknowledge, in writing, reporters who do a good job. You might even be able to get your letter in to the Letters to the Editor column by sending letters of appreciation and comment to reporters.
Practice, practice, practice. Practice in your head, practice with a tape recorder, practice before an audience—because practice does make perfect. Taking the time to prepare, evaluate, get honest feedback and reflection will sharpen your ability to use your story to represent the message of all those living with genetic conditions.
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