Some people think that I am obsessed by my relationship with my older brother, Mike. That is probably true. The saying, “You always want what you don’t have,” is true for me. It sounds weird, but I never have known my brother personally. But if you know about him, it is not that surprising after all. Nobody has ever known him personally. Mike is very low functioning, autistic and nonverbal. I have tried making contact through my photography, but this is a matter of me trying to understand him. He is pretty much alone in his own world.

Taking Mike to grad school

In the late 1980s I began taking photography classes with the idea of photographing my older brother. I have always been a visual person, but I wanted to develop my photographic skills for a purpose. My goals were: 1) to take pictures of Mike that were meaningful to me; 2) to be respectful and not exploitive; 3) to take pictures of Mike that would be meaningful to others; 4) to produce a coherent document about my relationship with him. I brought this same project to each class I took through the 1990s.

Interactive Telecommunication Program

I have always gravitated toward science, and am a techie by training. My professional life consisted of managing and developing technical departments at several VA Medical Centers. Toward the end of the decade of the 1990s, I wanted to see if technologies other than photography could help me learn more about Mike. I had an idea to create an immersive virtual reality (VR) environment of what it might be like to be my brother. It seems like a crazy idea, since it is impossible to know what it would be like to be another person. But if I could create an environment that would be my impression of what it is like to be Mike, it would be almost as good. Of course, I had to limit myself to sensory input, since changing the sensory processing (i.e., how the observer processed sensory information in his/her brain) would be an assault of another person’s body.

I was accepted at New York University’s Interactive Telecommunications Program (ITP) and began looking into building this environment. Through a Head Mounted Device (HMD) – Google Glasses of yesteryear – I would be able to control visual and sound inputs; instrumented gloves could provide perhaps haptic, or tactile input. But the technology at that time was too slow to process in real time; this information came from non-other than Jaron Lanier, who advised a group of us in our VR seminar.

Ultimately, however, Mike did provide me with my Master’s thesis material, and my immersive VR environment became a desktop virtual world.

I’m still on the outside looking in, but perhaps I created Jack’s world of looking at Mike.

 

[Postscript: Taylan Kay and his associates have embarked on an ambitious project to raise awareness of autism through video games that are intended to portray an autistic sensory world. (See my post, Recreating Autism.)]