There have been a few people in the news who have SA/CRS. Sometimes news stories or documentaries are made because our lives seem really unique to other people. Maybe it seems amazing that we can be so independent whether we look like others, or not. The more people see us, the better, because then they learn we are just regular people.
News stories and documentaries are an important way for the world to understand who we are, and to change faulty perceptions. In the media, drama in a story captures the attention of the viewers, but consider carefully the long term impact of words being used. Sometimes we see or hear unnecessary words in the media. Sometimes the terms give us imagined super powers or exagerated limitations. We're not "heroes", and not particularly "brave", though we may have our heroic or brave moments just like anyone else. Sometimes the words have a negative spin, such as "suffers from", "confined to", "victim of", "limited by" or other terms which encourage pity instead of advocacy. Everyone has some rough times in life sooner or later. Let our photographs show that we have a lot to smile about! The only limits are those made by the assumptions of others. Our lives may be terrific, or just routine, or going through a rough patch, and once in a while pretty amazing. All of us are just living our lives. Just ordinary people going about our daily activities, doing what we enjoy, using our talents, having our "issues", making mistakes, learning new things, and striving towards our goals.