Our interview and multimedia piece on National Public Radio (NPR) came out last week. It was a very exciting opportunity and we felt honored to have been asked to participate in this
project. The project was two months in the making: containing a combination of recorded conversations, interviews, photographs and video which were documented between October and December 2011.
The reporter who interviewed us was Deanna Pan, and the photo and video were captured by Mallory Benedict. Both were working as interns at the NPR Headquarters in Washington, DC. Their names are hyper-linked to their personal websites, and I encourage you to check out their other works. These ladies are very talented at what they do, which made it even more exciting to work with them.
Even though Dave and I have been photographed and interviewed in our various living spaces for previous stories, it was the first experience where we were being extensively photographed unstaged in our natural element. We voluntarily agreed to it, but it took a while to get used to. After several visits made to our home, it became a little easier to not act as posed. All visits were scheduled, our requests for what we didn’t want documented were respected, and it never felt at any point invasive. Still, it was impossible to completely pretend the camera wasn’t there. I enjoyed the challenge of that experience, and I would definitely do it again. It’s great practice for not acting so tense in front of a camera.
One thing to point out (in any media-related story or piece) is the final result is always a highly condensed version of everything that is written, documented, photographed and recorded. Time and word limit constraints on media pieces are strictly enforced, which leads to a lot of extra footage cut out. That’s just the nature of the industry, and the producers are often relied on to come out with an accurate portrayal of a given story after it’s condensed.
So far, we have been fortunate to have worked with journalists and producers who have good intentions, making a good effort to ensure truthful depictions of our lives are captured given the limitations of their footage time and writing space. We try to practice caution when approached by any press or media, and have only accepted inquiries which we felt would respect a realistic and unbiased message to the autism community.
Regardless of how well-respected a media outlet may be, I still get nervous while anticipating how the resulting piece will turn out. A general rule of journalism is that interview subjects don’t get to see a piece before it gets released to the public.
When you are being documented, you recieve a chance to step out of your “bubble” and see yourself from an outsider perspective. It’s a different perspective in comparison to how you perceive yourself interacting with your surroundings. You get to know and understand yourself better as far as how others observe you interacting with your surroundings.
Inviting an audience into our home and sharing an intimate view of our day-to-day life has, on a surprising note, reassured us that we are not as alone in our life practices as once thought. There have been other people who have come out and expressed shared similarities. If sharing our story opens a window of opportunity for others to be less fearful of sharing their own stories or to at least feel less alone, then it’s worth the leap.
On a personal note… if I had known so many photos of me in my bathrobe and untamed hair were going to be on there, I would have at least tidied up my appearance! But the point of the piece was to capture us in our natural element. So hey — that works.
The link to the story does contain an accompanying article which follows the audio somewhat, but I’m also including a full written transcript following the video embedded below.
Also special thanks to Stephen Shore for his cameo appearance!
Host: Romantic relationships — the everlasting kind — are not easy to come by. That’s especially true for people with autism. Their disorder makes it hard for them to read body language and emotional cues, and to hit it off with new people. But Intern Edition’s Deanna Pan met one autistic couple who say that their condition is what brought them together.
[piano playing in background]
D. Pan: On the first floor of a town home in Alexandria, Virginia, Lindsey Nebeker rattles the keys of her piano. Her eyes are closed, her body swaying, entranced in a musical spell. In the basement, her live-in boyfriend, Dave Hamrick, tinkers on another handyman project. As usual, they don’t spend a lot of time with each other when they’re at home together because like most couples, they have their differences. For one, the two haven’t shared a bedroom since they first moved in together four years ago.
Nebeker: Our temperature tolerances are very different. So, he likes to keep his room cooler at night when he sleeps…
Hamrick: About 65 degrees.
Nebeker: … than I do. I haven’t measured temperature about what I usually do…
Hamrick: Probably about 72.
Nebeker: I’ll take your word for it. I just know I like it warm.
Hamrick: You like it about 23 Celsius.
Nebeker: [laughs softly]
D. Pan: Sleeping in separate bedrooms may be unconventional for most couples, but then again, they’re not most couples. These two face rigid behavioral patterns, sensory issues, and an innate social clumsiness that makes finding and keeping friends difficult. For people with autism, dating (as one can imagine) can be daunting.
Shore: People with autism want to have a romantic relationship, but they’re unable to. They feel they… they don’t know the rules.
D. Pan: That’s Stephen Shore, an Associate Professor in Special Education. He too is autistic, and has been married for more than 21 years. He’s talking about the sexual and social knowledge most people pick up through adolescence. What other kids learn by observing, kids with autism miss out on. And it’s often tough to learn it on their own.
Shore: How do you go about asking a woman out on a date? How do you maintain the relationship? How do you move from being friends to intimate friends? These are things that most people seem to take for granted.
D. Pan: Things like non-verbal communication that can elude and frustrate people with autism. Innuendo, tone of voice, body language. In her tidy private bathroom, Nebeker practices her facial expressions in the mirror.
Nebeker: It’s so funny, ’cause it’s like I look at myself in the mirror when I’m ready and I think to myself, “Okay.. I look okay. I look okay today.” and then I walk out the door and then I immediately feel very self-conscious.”
D. Pan: A history of failed relationships convinced Nebeker to rule romance out of her life. But that changed when she met Hamrick, a meteorologist for the National Weather Service at an autism conference in Nashville in 2005. He was smitten, but she couldn’t tell. So he wooed her — slowly, systematically.
Hamrick: Frequent communications, and I let her know how special she was to me, and complimented her on her looks, and complimented her on how good she was with music. First move I made was that I put my hand on top of hers and she didn’t pull them away. So I knew that everything was going to be okay.
D. Pan: Since then, Nebeker and Hamrick have learned to love and accommodate the other’s particular quirks.
Hamrick: We usually will eat our meals separately because I have such a strong sensitivity to chewing and crunching sounds, and things like that. If there’s a situation where I can’t get away from it, and I’m stuck with it, I can start screaming.
Nebeker: I have this fear of eating in front of people, and sometimes I just can’t eat until… say, Dave goes to bed.
D. Pan: Sharp unexpected noises are physically painful for Nebeker. So before she or Hamrick enter a room, they alert each other with a soft reminder… a sort of, “Hey, I’m here”.
Nebeker: We will do a little “Pssst!” and we’ll wait for the other person to do a…
Nebeker: …back. “Pssst!”
Hamrick and Nebeker: [laughing softly]
[piano playing in background]
D. Pan: In an essay Nebeker wrote for Autism Spectrum Quarterly, she describes her love as an evolving contemporary symphony, full of off-key chords and uneven beats. A bit askew, if you will. But…
Nebeker: When you listen to it, it’s like one can learn to appreciate the unique different melodies and rhythmic contexts. If you love each other enough, you will make it work.
D. Pan: For NPR’s Intern Edition, I’m Deanna Pan.
top image credit: LinZ