Diogo Mainardi - The Fall - A Father's Memoir in 424 Steps

185

In the previous image: Tito and his Bobath therapist.

186

Neil Young has two children with cerebral palsy.

That’s right: two.

He is my guru.

187

Neil Young’s first child, from his first marriage, is called Zeke. Neil Young’s second child, from his second marriage, is called Ben.

Zeke was born in 1972. He has a mild case of cerebral palsy.

Ben was born in 1978. He has a severe case of cerebral palsy.

188

When Ben was two years old, Neil Young and his wife took him to the Institutes for the Achievement of Human Potential.

The Institutes for the Achievement of Human Potential persuaded them to devote all their time to Ben’s treatment, giving him twelve hours of physiotherapy a day, seven days a week.

189

The Institutes for the Achievement of Human Potential is a sect.

If Neil Young is my guru, the guru of the Institutes for the Achievement of Human Potential is Glenn Doman.

According to Glenn Doman, a child with cerebral palsy needs to be continually manipulated by his parents, because if he keeps passively repeating a series of standardized movements over a long period of time, his brain will change and replace the damaged parts.

190

In 1981, Neil Young recorded a song about Ben’s treatment using Glenn Doman’s method.

It’s “T-Bone” from the album Re-ac-tor .

It is the anthem of cerebral palsy.

191

In “T-Bone” Neil Young fanatically repeats the same two lines, for nine minutes and ten seconds, just as the physiotherapists at the Institutes for the Achievement of Human Potential told him to fanatically repeat Ben’s movements, twelve hours a day, seven days a week.

In the first line, repeated twenty-five times, Neil Young says, “Got mashed potatoes.” In the second line, repeated another twenty-five times, he says, “Ain’t got no T-bone.”

192

In 1989, some years after abandoning the Institutes for the Achievement of Human Potential, Neil Young, in an interview with the Village Voice Rock and Roll Quarterly , talked about Ben’s treatment following Glenn Doman’s method:

You manipulate the kid through a crawling pattern … He’s crawling down the hallway, he’s banging his head trying to crawl. But he can’t crawl, and these people have told us that if he didn’t make it, it was gonna be our fault … We lasted eighteen months. Eighteen months of not going out. Eighteen months of not doing anything .

193

In the last thirty years, the Institutes for the Achievement of Human Potential, with its stupid Lamarckian belief that passive, repetitive movement can mold the characteristics of children with cerebral palsy, changing their brains, has lost almost all its followers.

It was all mashed potatoes and no T-bone steak.

194

195

In the previous image: an egg.

Ben Young is now an egg producer. Instead of T-bone steaks, he has a farm in La Honda, with two hundred and fifty chickens.

196

During the treatment using Glenn Doman’s method, Neil Young and his wife moved Ben for twelve hours a day, seven days a week. While they did this, Ben remained completely passive.

With us it was the opposite.

Tito moved freely about the large apartment in which we were staying in Rio de Janeiro, going from room to room, twelve hours a day, seven days a week. While he did this, my wife and I watched in passive amazement.

Tito was our Glenn Doman. He changed our brains.

197

How did Tito move?

He had a ride-on car made by Chicco.

At first, he could only move the car backward. In time, he learned how to move the car forward and sideways, pressing down with his two feet at once.

When Tito started to pick up speed and fall over sideways, we fitted the car with two horizontal bars to give him more stability. When he started to pick up even more speed and to fall forward, performing a somersault, we came up with the idea of screwing another wheel onto the front of the car.

Tito’s falls had become as spectacular as Lou Costello’s.

198

The greatest obstacle to a child with cerebral palsy is the impossibility of discovering the world around him.

With his Chicco car, Tito partially overcame that obstacle.

He would go into wardrobes and take the socks out of the drawers. He would go into the kitchen and tug at the cook’s apron. He would pass underneath the ping-pong table while we were having a game. He would go into the bathroom and drag the roll of toilet paper around the whole apartment.

Tito was discovering the world. We were discovering Tito discovering the world.

199

200

In the previous image: Tito in his car.

The toy car was Tito’s second mode of transport.

201

As time passed, Tito’s cerebral palsy became more and more obvious.

Other boys his age were running around and talking. He remained harnessed to the past, trying to crawl. His body was mutinying against his brain. His brain gave an order, his body disobeyed.

Tito was Dr. Strangelove, always trying to strangle himself.

202

At seven months, Tito was simply a person we loved. At eighteen months, he had already become a person with cerebral palsy whom we loved.

We loved Tito so much that we even loved cerebral palsy.

203

I quote from the column I published on 24 June 2002:

There is no more thrilling adventure than having a child with cerebral palsy. The worst enemy for a child with cerebral palsy is gravity. It’s as if he were being permanently pursued by some crazed judo player who enjoys tripping him up. What he needs most of all is to learn how to fall. Then he’ll leap from white belt to yellow belt, from yellow belt to red belt, until he reaches his limit. All the motor abilities that we acquire automatically, instinctively, he is trying to acquire through discipline, method, thought. It’s the struggle of the intellect against savage nature. The perfect metaphor for the history of humanity. David and Goliath. Theseus and the Minotaur. Dr. Jekyll and Mr. Hyde .

204

(Picture Credit 1.13)

205

In the previous image: one of the sixteen falls made by Lou Costello in Abbott and Costello Meet Dr. Jekyll and Mr. Hyde .

No one falls better than Lou Costello.

206

I ended that column published on 24 June 2002 in shamelessly sentimental fashion. I loved Tito. I loved cerebral palsy.

When people learn that my son has cerebral palsy, they look at him with a mixture of sympathy and pity. I look at him as if he were a totem: with devotion, reverence and a feeling of inferiority. They say that a child with cerebral palsy is better suited for living on the Moon, where there’s no gravity. My son, therefore, is a man of the future, ready for interplanetary travel. You doubtless remember the Star Trek episode in which the aliens from a distant galaxy think that Captain Kirk is God? Well, I’m just like those aliens, and my son is Captain Kirk .