Jesse: On Inclusion, Humanity, and Grace

by Marianne Leone, an actress, writer, and advocate living in Massachusetts.

Jesse Cooper was an honor roll student who loved to windsurf and write poetry. He also had severe cerebral palsy and was quadriplegic, unable to speak, and wracked by seizures. He died suddenly at age seventeen. In Jesse, A Mother's Story, I wrote about the transformation a teacher like Jesse can bring to the lives of those around him. His father, Chris Cooper, and I became advocates for inclusion during Jesse's life and fought to get Jess his basic civil right: a free and appropriate public education. We won, after a two year battle, and Jesse went to his local public school, despite a special ed director who wondered "why should we spend money on these kids—they don't give anything back to society." The director no longer has a job at Jesse's school; there's now a scholarship in Jesse's name—the Jesse Cooper Give Back to Society Scholarship—given every year to a disabled student at his former high school, and the Jesse Advocacy Fund at the MA Federation for Children with Special Needs now trains parents to be their own advocates.


Jesse, A Mother's Story is a memoir that celebrates Jesse's life and grieves his passing. This is a memoir that strives to illuminate the humanity in all of us. This is a memoir that I hope everyone reads, to read Jesse's words in addition to my own. This is a memoir about inclusion that Barnes & Noble is shelving in the "special needs" section, without a trace of irony.

Below is an excerpt from Jesse, A Mother's Story which I have chosen for Shakesville.

DR. GOD
I knew Jesse was intelligent. I didn't need words to know that. I knew it when he was eight months old, when he burst out laughing the first time he heard the squeaky voices of the Chipmunks singing a Christmas song. He laughed at other silly jokes, too, things that would make any baby giggle uproariously, fishy faces and fart sounds. He became entranced with his own voice and we would laugh with delight to hear him respond to a question with a full-force yell, like a baby marine. He wore a smirk the whole time our yelling game went on, letting us know he was in on the prank. He understood us, even when he couldn't form the words to reply.

We had even heard him attempt "I love you" and other words. I told this to his pediatric neurologist when Jesse was around four, after he gave Jess an exam on our first (and last) visit to him. The neurologist looked at me with distaste. I was being deliberately obtuse, wasting his time with wishful thinking. I was obviously "in denial." From his Olympian neurological heights, the doctor pronounced his solemn verdict: Jesse would never be "intellectually normal." He said this to Chris and me, in front of Jesse. Then he asked, with what his lizard brain no doubt thought was kindness, if we planned to have more children. Chris wept on the way home as Jesse slept in my arms, and asked me what the neurologist meant by that, about having more children. "Get a good one," I said. "A different one." I looked down at Jesse's tufted teddy-bear hair. I wanted this one.

The very next week, Jesse worked with his occupational therapist on his shapes puzzle. Chris had glued wooden knobs to the shapes so Jess could grasp them easily. The therapist asked for the rectangle, then the square. It took Jess a full minute to tame his wavering arm to grasp each piece, but he delivered each shape correctly. Then she asked for the octagon. Instead of reaching for the shape, Jesse said, with great intensity: "Oct…..eight." I heard him say it, and thanked all the fates that the therapist heard it, too, so I wouldn't get any more "in denial" looks when I reported this feat to other medical doubting Thomases. I told Chris that I knew teenagers who didn't know an octagon had eight sides. As far as I was concerned, our son was brilliant and we would raise him that way.

"Screw the itsy bitsy spider," I said. "Let's give him Yeats."

Years later, when his intelligence was finally tested correctly, using an adapted computer, Jesse scored in the ninety-ninth percentile. I wrote to the neurologist, that ice-cold genius who didn't know the basics of human compassion. I told him that I knew how hard it must be for him not to confuse himself with God, since he had acolyte interns hanging on his every word and parents praying to him for answers, but that he was most definitely not God. In fact, he was a murderer. He murdered the futures of brain-damaged children every day by making absurd hubristic pronouncements even though nobody really understands how the brain works, especially a child's injured brain.

If we had believed him and stopped trying to teach Jesse new things, the neurologist's dire prophecy would have been fulfilled. But the neurologist was right about one thing: Jesse wasn't "intellectually normal." He was intellectually superior. Take that, Doctor God. Of course, I never heard from him again. But I like to think he hesitated before asking parents in code if they planned to get a good one the next time.

THREE GRACES
My dealings with neurologists in the course of Jesse's medical life were frequently fraught with social dysfunction. On their side. I'm not the picture of mental health and admit that the towering grizzly mother part of my persona was always in the room with every member of the medical community that treated my son. But the mortal fear Chris and I felt about Jesse's seizures and their possible effect on his body and mental capacities was made worse by what felt like interspecies communication. Occasionally a neurologist would rise to the level of cyborg, if we were lucky, speaking in English instead of words we would have to look up later. Those were the ones who spoke only to Chris and me. But even when that happened, I stopped listening. While they droned on about "brain insults" and pushed wonder drugs that didn't work, I was having a shouted one-way conversation with them in my head.

"Can you see my son? He's sitting right here, in my lap."

"He is a sentient being, a member of the human race. Are you?"

"His brain isn't just a meat computer that crashed with a fatal error."

"He is alive, conscious. Can you tell me where the seat of consciousness is? Is it in the brain?"

The conversation never went beyond the voices in my head. We just listened to their drug suggestions and brain insult descriptions and then moved on, insulted in our own way by the snubbing of Jesse's soul. Another office, another neurologist. We weren't shopping for a better prognosis. We knew Jesse had brain damage and a seizure disorder. We were looking for grace.

If we couldn't find a neurologist who could regenerate Jesse's damaged brain cells, could we at least find one who could show us some mercy and who had the moral strength to see Jesse as human?

We found three, all women.

I don't remember how I found the first, Dr. Catherine Spears, when Jesse was not yet two and in the throes of horrific teething pain. She was in her early seventies then and, unfortunately for us, about to retire. I remember thinking that at the time Dr. Spears went to medical school, she must have been the only woman specializing in the male-dominated field of neurology and that it took a strong temperament to withstand that particular trial by fire. Her steely strength was tempered by gentleness and wisdom, and she met my first criteria: she related to Jesse as a baby first, a baby with a seizure disorder second. And Dr. Spears was unafraid to try alternative treatments. One of the first things she did was magically erase Jesse's teething pain by placing acupressure balls in his tiny ears. However, she, like everybody else, was unable to do anything about the seizure disorder. Her retirement returned us to the generic offices of the generic neurologists who didn't seem to see our son.

When we moved to Massachusetts we again found grace, this time at Boston Children's Hospital. Dr. Sandy Helmers was a young, slim, woman with hair the same color as her name. By then, our opening family act was unvarying; I picture us advancing into the random neurologist's office like a Roman phalanx, shields raised, with Jesse at the protected center. I would watch for any sign of empathy from each new doctor during our long recitation of Jesse's medical struggles and cognitive triumphs. If even a glimmer of warmth appeared, the shields went down and Jesse was revealed to the neurologist, Chris and I still hovering close by. Dr. Helmers looked directly at Jesse, asked him questions, reassured him.

She left for a position in Atlanta after only a couple of years. Her replacement was Dr. Elizabeth Thiele. By then we had become less wary that a neurologist would not see Jesse as sentient. Jesse was communicating well with his computer and was undeniably present in the world. He was enjoying school and doing well.

But some neurologists did not think about what the drugs they proposed would do to Jesse's alertness, his ability to think, to learn. They did not consider how blunting Jesse's learning would take away his greatest pride and pleasure. And so they proposed what was new on the market—wantonly, it felt to me. Each new course of drugs meant waiting and watching for the ever-present side effects, a full-court internet study by me, and the usual outcome—no change. So the new shields went up, this time about drugs.

When I met Dr. Thiele, I asked her what new drug she would be pushing. She was my age, with a warm, open face. She laughed merrily and told me she was "much more granola than that." Then she concentrated on Jesse, cracking wise with him and making him grin. When she heard he wrote poetry, she asked Jesse if he would like to include one of his poems in an exhibition she was putting together of works by kids with epilepsy. I put down my shield and accepted grace when it fell upon all of us.

INSIDE/OUTSIDE

On the inside, I walk
On the outside, I give
On the outside, I am mute
On the outside, I give
On the inside, I speak
On the inside, I walk

— Jesse's first poem, age 10

* * *
Note from Liss: Marianne was kind enough to send me a copy of her book when it was first published, and I was very moved by it. A long time ago, Marianne and I were corresponding about something unrelated to the book, a project Marianne was working on in which she was getting resistance and meeting it with her usual tenacity, and I wrote to her, "You're a Worst Nightmare broad. I love Worst Nightmare broads."

This book is the story of an amazing boy and his mother, who was the worst nightmare of anyone who couldn't see past their disablism and/or privilege to respect his humanity. It is a book about teaspoons, and a book about love. Funny how often those two things go together.

Jesse, A Mother's Story comes out in paperback today.