My search to understand my older brother, Michael, who is autistic, very low functioning, and nonverbal has led me in many different directions. I have read about epistemology, the study of what is knowable; theories of consciousness; anatomy of the brain; principles of neuropsychiatry to get some idea of what could be going on in his head.
The most fruitful endeavor however was of a more personal nature. I spent time with Michael, trying to interact. Since he is restless and inattentive, it is difficult to know what is happening at the moment. Photography is the perfect medium to capture moments with him and analyze them later. I sought guidance by taking classes from photographers with experience constructing visual essays. Mary Ellen Mark, acclaimed photojournalist, proposed that I spend 24 hours with Mike in order to better understand his routine. I visited Mike at his group home to document some missing details of his daily life. I wrote about the balance of privacy and the need to capture certain moments to tell a story, in my post entitled ‘Lessons’.
The following is from my journal and describes my time documenting Mike at his day program for my assignment:
May 12, 1992
Arrived at the day school 8:55 AM. Didn’t run into any problems. I photographed Mike getting off the bus and in some of his daily activities. B__ is his teacher and P__ is the assistant.
Mike is in one of the lowest functional groups. B__ is so very proud of them. Today Mike put pennies into a can for the first time. He looked genuinely pleased at doing that.
L__ is in his class. He’s a wreck: at Willowbrook since he was 5 years old. Was verbal before he went in. Now he’s not. Slow moving M__ is there. She looks the same as she did when I last visited. S__ and V__ are also in the class. V__ looks like he had his ear cut off and grafted back on wrong: scary looking dude, and strong.
At times it was utterly revolting. Disgusting. L__ is legally blind and, according to B__, has a heightened sense of smell. He likes to smell everyone. He smelled my bald spot and my clothes. I was a little concerned, as the staff all wore latex gloves and oozy stickiness was everywhere. L__ also came up with a hand full of shit toward the early part of my visit. He and P__ disappeared for a while. He was clean when he got back.
I spent from 9:00 AM to 3:30PM there: six and a half hours. I was at Mike’s residence from 3:00PM to 9:00PM: six hours. Almost exactly half the time I was supposed to have been there.
I did learn some things. The shower and his getting ready for bed were very difficult to photograph. I saw much more than I photographed and was surprised by how few pictures I had taken. I may also have taken much of the same type of picture that I had before. Oh well, film is cheap (?).
May 14, 1992
One of my reactions to going to see Mike was a kind of anger; anger at getting psyched up by the photo class. Being convinced that there is something, some communication between my brother and me and finding the thin brick wall again. It was tough going to his school: feeling out of place; taking pictures and being uncomfortable about it; feeling unable to communicate.
The pictures lied. Out of thousands of pictures, I chose 50 that portrayed some kind of relationship between my brother and me. I didn’t recognize truth in any of those pictures.
Do you still think the pictures lied, or do you feel differently reviewing them after this length of time?
They lie in the sense that the relationships shown in the photos can’t be verified. Pictures where Mike seems to be engaged, are just a 1/60th of a second coincidence. I posed this same question to my Mom about one photo in particular, she said the same thing: Mike only seemed to be engaged.
That is so very sad. Unfortunately, people ‘lie’ about there relationships with family members with disabilities because they feel ‘guilty’ for not having that close type of connection. I am proud of you for writing this; for being honest. Silence is the death of progression.
Thank you, Michelle. Indeed there are many different reactions to disabled and handicapped family members. Direct communication is often quite difficult. Unfortunately it is not easy to reconcile the relationship that one has with what one wants. My obsession seems to be trying to know the unknowable.
Jack, I toast you on your obsession!
I know how tough it is but everyday is a fight and every fight to survive is a good day. My grandson, also Michael, had brain cancer at the age of two. He beat it through chemos and stem cell procedures. We were so glad he survived we would have accepted any consequence. It took years but the brain works at balance. Today he is twelve and on a baseball team. Miracles are out there and someday there may be developments in autism which will be helpful. We can only hope and pray.
I am so very happy for you! What a roller coaster that must have been. Your grandson is fortunate indeed, for his fighting spirit and also, not to be ignored, the loving support of his family.
all the best,
i have a different experience with autism, each is unique, and i deeply appreciate this blog. liked the “tough honesty” is i may call it so in that post.
Thank you for your kind words, Maya. Indeed each individual with autism is different. Some are more reachable than others. However, whatever the case is, there is much to learn from any autistic person.
I thank you for writing this. I tend to look at it from what might be a different perspective than you. What is a relationship? Why do I think it is important? What influences me from outside of myself to demand life on life’s terms to become that relationship? This helps me to tolerate and to allow side-by-side parallel situations to be what they are, and to be able to simply allow sharing to be the ‘relationship’ without needing it to be anything other than a moment. It also helps me not to feel lost, abandoned, or sorry for myself when I can’t get what I think I ought to be getting. I can say that I can spin myself into knots by not knowing if I am doing what my children really need of me. Their insides can be entirely different than their outsides. I am supposed to be perfect. I am supposed to understand. I haven’t yet worked out what to do to navigate this issue in a mutually satisfactory manner, but, I’m a work on progress, so I’m progressing.
Interesting take, although I don’t think we differ that much. A relationship can mean different things in different contexts. For instance, when I draw, I try to get the spatial relationships correct, for instance the angle of the branch of the tree is at a 45 degree angle to the trunk; to draw it as it appears means that I try sketching my branch on the paper at 45 degrees with respect to the trunk. If I wish to portray a different relationship between the branch and the tree, I can do that by drawing a differently angled branch, but that relationship is in my head; it does not portray the reality in front of me.
Sharing is a good way to relate to people. Whether or not there is much overlap is a different matter. I think I understand what you mean about accepting the degree of overlap that is possible. For instance I have some very conservative friends, and sharing political ideas is not very productive, as there is little common ground. But there is more common ground in other areas, where we do indeed share, and that relationship is good.
However, what can one do when there is no common ground at all. For instance, if a person you want to share with doesn’t acknowledge you; if you’re not sure s/he recognizes you; if there is no outside indication of any overlap at all, what would you do? How would you define that relationship?
I could accept this for what it appears to be on the surface, a tree with a branch at 45 degrees for instance, and say, “it is what it appears to be,” and be satisfied, but I’m not. It would be easier, I’m sure, but I’m looking for something tantalizingly close, yet impossible to get to. Picture someone face up under a clear sheet of ice in a frozen over lake. Try as hard as you might to break through and you can’t. It’s frustrating. Suppose that person is as happy as can be, with gills and a wet suit. You still want to communicate and have some kind of relationship, but at least you know s/he is ok. I suppose that should be enough.
Thank you so much for your comment, and for reading my blog.
Thank you for sharing this. That sounds really hard. I don’t know what it would be like to be there, but even if it didn’t feel like it, I think your presence was likely felt by your brother in a good way. This is a beautifully written piece.
Thank you for commenting. I like to think there was something, but for some reason I crave obviousness. I may have to settle for imagining what could be happening on a different level.
Thank you for your kind words.
Personally if you think the photographs are not honest enough then I don’t think you spent enough time with your brother.
In the summer of 1992 I began a workshop with Mary Ellen Mark in Santa Fe, but unfortunately I quickly decided that she really had not much to offer me. Her suggestions for me were too impersonal and disconnected, especially so compared to the environment I was living in and photographing.
I wasn’t able to schedule the photographs I wanted to do during the workshop, but I was later able to do exactly what I thought I could despite Ms Mark’s disagreements with me.
I think that you should have photographed your brother until that became a comfortable situation for you. Because they way I read this post, it doesn’t appear it was easy to be there to do so.
If you are familiar with Mark’s work in the insane asylum, you will note she photographed as if she was right at home.
I didn’t say they weren’t honest. Photographs can be deceptive, as you may know. In that sense, they don’t reveal a truth of coherence. The represent a moment out of time.
As you may not know, no matter how much time you spent with an autistic, depending on the level of functionality, there is a limit to what is knowable.
Mary Ellen Mark’s work in asylums, particularly Ward 81, are more like hit and run as opposed to being at home with her subjects. I get your meaning though.
Thanks for your comment.
Hmmm…Look more closely. I find truth in photographs. Even staged photos. I loved reading your post. Congratulations on being Freshly Pressed!
Thank you Suzanne.
One can read a truth into a photo, I suppose. However, photos can be very deceptive, in that they may represent a split second that is not representative of the larger context. I suppose that it depends on the use of the photo. In trying to re-create the past, I am suspicious of the dissonance between what I remember and what the photo shows.
Thanks for reading my blog. Another of my posts, Photography and Truth, may shed some more light on my view of photography.
I really love that you shared this story on your blog, and that you included such pictures that tell such stories. best of luck.
Thank you. I’m glad to be able to share something about my attempts to make some sense out of my brother’s world. I appreciate your comment.