Unfolding the Map
We ride near Hungry Horse, Montana where William Least Heat-Moon has to curb his desire to help a disabled boy who struggles with filling a water jug. That leads me to reflect on the nature of disability, strength and courage. Why don't you find the strength and courage to check out Hungry Horse on the map?
"The boy was severely handicapped. Trying to fill a big thermos from a spring spewing out of the mountain east of Kalispell, near Hungry Horse, he laughed as the cold water splattered him, and he burbled something.
"I had no idea what he said. 'Very cold water indeed,' I answered.
"He burbled again, then lost his footing, and fell hard on the wet rocks. The gush hit the flask and kicked it away. I went to help him.
"'Leave him alone!' someone shouted over the crash of water. A man who looked as if he'd swallowed a nail keg came toward us. 'Let him do it. You'll make him weak if you do it for him. He's my son. He understands....'
...."'He'll never survive if he gets turned into a pussy,' the father said."
Blue Highways: Part 7, Chapter 4
Hungry Horse, Montana
I have a very visceral reaction to the quote above. I understand what the father is trying to do, and I understand the motive in asking that a stranger leave his disabled son to solve his own problems. As a person who hasn't had any children, much less had to figure out ways to raise a disabled child, I am not in much of a position to make judgments on parents who are trying to do the best for their children.
And yet, like I wrote above, I have an intense reaction to how the father describes what his son might become if he is offered help. I have a sense that the father himself doesn't like to accept help and might be putting that expectation on his child. If you read a little farther into this encounter, you'll read that the father, using the water from the spring along with other ingredients, makes suppositories for hemorrhoids. He seems like one of those rugged Montana stereotypes, one who makes his own rules and doesn't need help from anyone. And if so, that is a shame because no matter who we are, disabled or not, we all need to be able to accept help from time to time.
This quote, coming on the heels of Arthur O. Bakke's parting biblical words on how hardships mold a man in the previous chapter, is quite striking. Hardships may mold a person, but what if the person is facing a disability already? Does adding hardship onto hardship have the capacity to create an able-bodied human? Or does piling more hardship on a disabled person simply ask too much?
My interactions with the few disabled people I have known has convinced me that when it comes to meeting hardships with courage and strength, you won't find any parallels. Imagine that you have cerebral palsy. The condition contorts your body, makes movement difficult, and renders you hardly understandable. Just getting around from one place to another, so easy for a able-bodied person, becomes an odyssey of trials every day. I knew a person like that - a man named Dennis. He walked with a cane, very slowly and with great lunges as if he had to literally throw his body forward. He had to struggle to make his words intelligible. Yet three times a week at least he took the bus or got a ride to an organization in Milwaukee that I worked for in the 1980s, a non-profit agency that organized unemployed people to speak up for their rights, and he volunteered without pay to bring the voice of the disabled unemployed to our discussions. I was much younger and more naive then, and I marveled at how he could get up and struggle like that every day. What I forgot was that his life was what he had. He did what he did because he had to. He wouldn't have chosen to have cerebral palsy, but that's the hand he was dealt. He lived with his disability and yet he contributed to society and he did it with a grace and a humor that you don't see often, even among people who aren't disabled. I came to admire and respect him and to value his opinions on our work. It was my first experience with a truly disabled person, and it was an experience of personal learning.
Recently, I again saw amazing courage from some disabled people. I was asked by a friend to be in a play she wrote and was directing. I'm not a trained actor, but she felt that I would be able to play the part she had written for me as well as mesh with the cast. I was one of four able-bodied persons in the play. The rest had a variety of disabilities. One was bipolar, one had severe spinal curvature, one was autistic (with epilepsy) and one had Down's Syndrome. The play was about epilepsy, and involved a number of characters in history, such as Napoleon, Alexander the Great, Julius Caesar, and Joan of Arc, who are suspected of having epilepsy or actually had the disorder. I was Julius, and I had a lot of scenes with Alexander, who was played by Phil, the young man with Down's Syndrome. I was also matched up at other times in the play with the young woman with autism, named Cynthia.
Phil was very nervous about the play. He loved to act, but in a previous play, he had to wear headphones and repeat words spoken to him because he had trouble remembering his lines. He was sure that he wouldn't remember them in this play and was afraid of being embarrassed. All of us encouraged him, and I helped him memorize his lines when we weren't on stage. At one point, the stress of it all led him to have an intense emotional breakdown in one practice. Yet as it became clear that he could remember his lines, and as we adjusted his part for him, and while the cast covered if he did forget on stage, you could see his confidence grow. By opening night, he was ready to perform, and he nailed his part. He had the audience laughing and eating out of his hand. I was very proud of him, not just because he remembered his lines, but because he had the courage to push his boundaries and shatter them. I felt the same way about the young woman with autism, who also nailed her role despite also having some difficult moments in practices.
Though I've never met her, I am also amazed by the courage of the daughter of a friend. She was born with cystic fibrosis, and throughout her childhood has had to endure regular hospital stays to remove mucus from her lungs. Though CF is not technically a disability but an illness, I think there may be certain similarities. She is an active young woman, yet she must live with a disease that causes disruptions in her life and which entails much uncertainty about her future. And yet, she lives her life as fully as possible with a loving and supportive family.
These recollections bring me back to the quote. Is it helpful to people with illnesses and disabilities to throw them into hardships in an attempt to make them stronger - to keep them from becoming dependent and make them better able to handle life? Or, is it more wise to encourage them to perform to their ability, and even encourage them to push boundaries selectively to help them discover all they are capable of, while offering the help and support they need? Such an approach might entail both the disabled person and their support, whether it be a parent, partner, or a social worker, to decide what is appropriate and can be accomplished given their level of disability. Such relationships, based on trust with people willing to help if needed, don't make disabled people "pussies," but are encouraging, challenging and practical all at the same time. As able-bodied persons, we have it easy. Disabled people are easily more courageous than us, and stronger in character. They have to be.
I found this song in an article by a disabled guy, Anthony Tusler, who put together a list of tunes for a dance at the Society of Disability Studies. I think Tom Waits can be very profound, and this song, Kentucky Avenue, is about the dream of one able-bodied kid to help his disabled friend free himself of his disability. You have to hear it to the end.
If you want to know more about Hungry Horse
Next up: Marias Pass, Montana