Great and Unfortunate Things

She was sitting in her deep, red, velvety chair affectionately known as The Mothership that, over the years, had come to know the shape of her, even when she wasn’t in it. To this day, if you’re sitting in that chair, you’d better vacate it as soon as Giff walks into the room; that chair is her sanctuary, her throne, fit for our matriarch, our queen. Like the Mothership, Giff has always been a constant source of comfort for me. I went to hug her and told her I couldn’t stay long, that I was just there for an hour or so to pick up some stuff, then I had to leave to get the train to Brighton. I was giving a keynote speech there the next morning.

Giff asked me when I would hear about the job. I told her it might be a few days, maybe more. As it turned out, I didn’t have to wait as long as that. About an hour after I got home, my phone rang. It was a Cambridge number, so I answered. The voice on the other end of the line calmly explained that they had made their decision: they were excited to offer me the Professorship in the Sociology of Education.

After the call was over, I came downstairs to find Giff still in her chair. She saw the smile breaking through my poor attempt at a poker face.

“You did it, didn’t you, Jason?” she asked.

“No, Giff,” I told her. “We did. We did it…”

We hugged as Giff cried into my shoulder.

Of all the places I could have been when that phone call came in, it was only right that I was home with Giff. Of course she was overjoyed for me, but she had been overjoyed so many times, at every one of my milestones—not just the big ones, but the small ones too.

Given where we had started, there had been a lot of milestones along the way.

When I was three years old, the doctors diagnosed me with autism and global developmental delay, which is a term used when children under the age of five have significant delays in speech, cognitive abilities, motor skills, or social skills. My delays were in all of the above.

“There’s no one in there,” the doctors told Giff. They said that I was “deficient,” and that I’d never be able to talk, read, or write. One doctor insisted I was “no better than a vegetable” and wouldn’t be able to have meaningful relationships. “He’ll never be able to live independently. Never be able to go to school with normal children. You might want to place him in long-term care or a home for children with similar difficulties because he’s going to need lifelong support.” To them, I was a lost cause.

Giff was devastated, as any parent would be, but she was also a person of faith who had already been through many challenges in her life. Soon after the doctors gave their grim prognosis, something occurred to her: These experts don’t have a crystal ball. She decided they didn’t know what the future held. How could they—or anyone, for that matter—measure a child’s potential at such an early stage in his life?

No one wanted to listen to Giff, a humble woman from Ghana without a degree or letters after her name (those accolades would come later). The doctors wanted her to submit to their “better” and “superior” judgment, but they failed to see that her lack of formal training actually worked to my advantage because she was able to approach being my parent with an open and fluid mind. Before the word “neurodiversity” had even been coined, Giff understood the concept: that every human is an individual, unique and whole—and that the world needs all kinds of people. God had made me, and so God, in his infinite wisdom, had given her not a burden but a gift. This was an article of faith for her.

Giff decided to ignore the “experts.” Instead, she chose to listen to her heart—and the words of the South Asian midwife who had delivered me at the hospital. It had been a difficult pregnancy and labor, and as legend had it, when I finally made my entrance on the 9th of May, 1985, the Tears for Fears song “Everybody Wants to Rule the World” was playing on the radio.

After my arrival, the midwife stayed at the bedside, holding my hand and studying my long fingers. Then she looked at Giff straight in the eye and said: “Where I come from, babies with long fingers are special. This boy is destined for great things. You hear? You take care of this child.”

“Of course I will,” Giff told her.

When her shift ended, the midwife returned to check on me. “He’s going to do something special,” she repeated. “I’m telling you: please, please look after him.”

These words made a lasting impression on Giff, and she returned to them again and again when others encouraged her to give up on me. They helped her to envision a future for me that the naysayers couldn’t see. “I don’t know what that woman did to you when she delivered you, Jason,” Giff would later say, “but I always feel like she blessed you with something because you have some truly exceptional gifts, and the things that you’ve done and experienced are inexplicable. So maybe she was right.”

But there was another prophecy that has resonated throughout my life—one I didn’t hear until I was twenty-one years old. It was 2006, and I was on a relief mission in Brazil, working with an organization installing water pumps in poor communities. We traveled from place to place, spending two or three days in Rio de Janeiro’s favelas—shantytowns that cling to the hillsides, stacked with tumbledown houses and shacks.

It was the middle of the day, baking hot, and the sky was a brighter blue than someone who grew up in overcast South London could ever have imagined. We were in one of the favelas, teaching a group of children how to use the new pumps so they could finally drink clean water. I didn’t speak Portuguese, but I was paired with a local aid worker who spoke some English, a woman in her thirties with dark hair and eyes and a gentle, steady way about her. She translated my words, and together we demonstrated how the pump worked.

The children were smiling and attentive, though it was clear they were itching to play football with the makeshift ball made from plastic bottles and cardboard that one of them was carrying around.

At some point, the aid worker studied me as I bent down to help one of the children. Then she said quietly, almost to herself but loudly enough for me to hear: “You have a very beautiful heart.”

I smiled and swiftly replied, “That’s really kind of you.”

Then she moved towards me and rested her hand on my arm before speaking again. “I can tell you’re destined to do great things. But I also believe you’re destined for very sad and difficult things as well.”

It stopped me cold.

“What? Any more than other people?” I asked, half confused, half unsettled. This woman had just met me. She didn’t know anything about me.

She looked straight into my eyes. “Yes. I think so.”

We let the conversation drift after that, but her words rattled in my head the rest of the day and late into the night. The next morning, when I saw her again, I pressed her.

“Why would you say that about my life? About great things and sad things and difficult things?”

She smiled almost regretfully. “Maybe I drank too much the night before.”

“No,” I said. “You seemed perfectly sober.”

She closed her eyes and then opened them and spoke again: “It’s just a feeling. I could be wrong. But my feeling is that you will face very challenging times, and still, you will achieve greatness. That is God’s will. So you must never lose faith.”

After the trip was over, I never saw the woman again, but her words stayed with me and, you might say, her prediction came true. The child whose parents were told he was less than human is now living a life filled with meaning and purpose, yet there has been sadness and difficulty too, experiences that have stretched my faith to breaking point. Somehow, the impossible became the possible, even if the path to get here was winding, fraught with obstacles, never straight.

As part of my job, I’m often asked to give talks all around the country—and the world. Every time I do, people come up to me afterwards, always with the same question: “How did you do it?” I know what they’re asking me. They want me to tell them how I went from the challenges of my early years to being a professor. But it’s hard to give them the short version because the truth is, it’s a long and complicated story. Was destiny involved? The great and unfortunate things foretold? Or was it because of the system that failed me, and some truly extraordinary people who loved and believed in me, and helped me to overcome those barriers? Or something else altogether? And so, I usually just reply that I didn’t do it on my own, and that I was lucky to have a lot of supporters in my corner because it meant that I was never allowed to give up on myself, even when I was desperate to do so. And none of these people were more important than my mother.

The day I got the news about the Cambridge job, I knew that for Giff, it had been thirty-seven years of pure faith, encouragement, dedication, hard work, and love. I also knew then what I had always known: that as long as I tried my best—as long as I gave it my all—Giff would be happy. Her love is unconditional and all-encompassing in that way. Cambridge was a quite remarkable and unimaginable cherry, but for Giff it was not the cake.

The cake was all in the moments that came before.

Chapter One: A Different Timescale CHAPTER ONE A Different Timescale
It’s a strange thing to spend almost twelve years of your life without language, and then to have to describe that time using only words, as I’m doing here. Most of my memories of my early childhood are of generalized images, sounds, sensations, feelings, rather than specific events, perhaps because language helps us to form memories, and I didn’t have access to that until I was older. But there are at least two core images of my childhood self that stand out to me.

The first is of being in our kitchen, either tethered by a cloth to Giff’s back or perched on her hip. Both gave me a great vantage point, and I would cling on while she worked, her hands always in motion as she finely chopped tomatoes, onions, peppers, and scotch bonnets, fingers crumbling Maggi seasoning cubes into the dish of the day. She’d lean over the stove, and I’d tip with her, feeling the steam rising and then cooling on my skin as she took the cook’s privilege of tasting the edge of the wooden spoon, assessing for flavor and of course the spiciness—the hotter the better. Ever resourceful, she could make one pan of soup or stew last for four or five days, adding to it, heating and reheating. Her favorite to cook was the Ghanaian staple light soup, with its fiery tomato-infused broth, as it had a longer shelf life and was also the least labor-intensive to assemble while holding a toddler on your hip or having them harnessed to your back. I’d watch in fascination as the soup came to a boil on the stove. From that same perch, I saw bread rise, cakes ripple, and biscuits thicken. When she took the bread out of the oven, Giff always tapped the bottom of the loaves with her finger so she could feel the density and hear the hollowness. Then I’d watch her cut the first slice, the knife serrating through and the steam emerging from the bready insides. On the days when there wasn’t enough food in the cupboard and we had cereal for dinner, Giff added evaporated milk and sugar to sweeten the experience, making it taste more like pudding. Even ketchup and corned beef sandwiches were delicious when Giff made them. The smell of her cooking saturated the house, giving the air a thickness that clung to my clothes, so that every time I went out, it was like carrying a bit of home with me.

My other core memory is of sitting in room 3 of our local health center: an altogether different experience; this was a small, blank-walled, antiseptic space with a couple of beanbags to sit on, a single window, and a table with some blocks and other shapes laid out on it. I spent hours and hours of my childhood in room 3. After I was diagnosed with autism and developmental delays, the local council granted me multiple hours of speech therapy, three days a week, every week, for the best part of ten years.

All children are born nonverbal, but most children start using words around their first birthday. That wasn’t the case with me. When I started speech therapy around the age of four, I had yet to talk, had only just learned to walk, and still needed someone to spoon-feed me. I didn’t play with toys much because I didn’t seem to understand their purpose, and when I did show interest in them, I would often break them. While most children learn to color with crayons by four, I didn’t have the fine motor skills for that, nor did I have the cognitive processing to understand when someone showed me how to do it.

In addition to my various delays, I had sensory sensitivities too, especially when it came to loud noises. As a result, I often struggled to leave the house, and Giff had to find all kinds of ways of distracting and soothing me so we could get to my speech therapy sessions on time. Outside the house, I was acutely aware of everything—every sight, every sound, every vibration. Even the air particles felt different to me after we left the cocoon of home. Inside, the air was thick like a blanket, full of the scent of Giff’s cooking and her love, but outside, the air felt much thinner, which made me want to immediately turn back. The problem was, as much as I wanted to retreat, I also didn’t want to leave Giff’s side, so I kept going, my shoulder brushing against her hip as we went, eyes fixed on my feet to ground me, up the narrow set of steps that led to the main road. The trees and bushes on either side of the steps were overgrown, so Giff had to push them aside, and I’d close my eyes, bracing myself, not just for branches springing back at me, but for the dreaded rumbling roar of the main road: cars speeding, buses chugging along, the whistle of a bike going by, the stray runner from the morning doing his loops. At the top of the steps, she’d make sure to offer me her left hand, my favorite because it had a keloid scar that had formed after she gashed herself opening a can of tuna once. I loved that smooth, protruding scar. Sometimes I’d rub my thumb against it, other times my lip. If I happened to be on Giff’s right side, I’d run around to grab her left hand so I could feel the keloid, distracting myself from the growl of the traffic as we went.

Eventually, we’d arrive at the clinic, a low-level yellow-brick building with a cold, hard glass front door. If I refused to go inside, Giff had her methods of persuading me. One of these was to give me a five-pence piece from her purse. As soon as she handed the coin to me, I became transfixed by the light reflecting off its gleaming surfaces, the Queen’s head on one side and the crowned thistle on the other. Giff had cleverly figured out that a five-pence piece was perfectly designed to capture my imagination and could therefore be used to successfully occupy my attention as she ushered me through the door.

Inside, the clinic was as unappealing as it was clinical. No pictures on the walls, just chipped off-white paint, and underfoot, scuffed floor tiles giving off the unpleasant whiff of industrial bleach—typical of an underfunded public-sector building in South London in the late 1980s.

We sat in the waiting area while I examined my prized silver. When it was time for the session to begin, my therapist, Katrina, came striding through the swinging glass door on the other side of the room. A round-faced young woman with hair in a ponytail, Katrina had glasses sitting on her nose and a weary smile on her face.

After she came to collect us from the lobby, we’d make the short walk to room 3 on the ground floor. Inside, I’d plunk down on one of the beanbags, and Giff would whisk away the five-pence piece, gesturing that she would give it back to me when I’d successfully finished the session. Giff had already learned that there were many ways to communicate with me without using words. All she had to do was squeeze my hand as she retrieved the coin and widen her huge brown eyes, and I knew exactly what she meant.

Once Giff and the coin had gone, I was left with Katrina and the wooden blocks and shapes set out on a table in front of me. Katrina’s mouth started to make noises. What was she trying to tell me? I had no idea. I could register sounds, but I couldn’t shape them into meaning. Occasionally, I’d attempt a response, a barely audible “ah” or an “oh”—a syllable at most, but nothing that added up to a real word. As Katrina might have said, “There is no clear path through the cognitive and developmental blockage.”

In every session, she would go through the same exercises, the identical sequence of words and parts of words, pointing at pictures, trying to get me to say something. But with nothing visually exciting to grab my attention, I’d lose interest almost immediately, becoming internally stimulated instead. That’s when the colors in my mind—the ones I’ve been able to see for as long as I can remember—would begin to activate. By blinking my eyes, I was able to send bright orange, blue, and green smoke clouds swirling around room 3. I’d watch them explode against the all-white walls, completely occupied and entertained by the fireworks of my imagination. Sadly, Katrina couldn’t see the smoke clouds, just my staring, vacant expression.

Despite my therapist’s best efforts, nothing could distract me from this entertainment except maybe the true object of my desire: the shiny coin waiting for me, along with Giff, back down the hall. And so, as the session progressed, Katrina’s tone started to shift, her voice no longer sweet and imploring but clipped and direct instead. Even if I didn’t understand her words, I could recognize the signals that something about her was changing. She’d rub her face, and her glasses, which started the session resting on the bridge of her nose, would move north until they were sitting on top of her head.

When I first started going to speech therapy, Katrina was freshly trained, new to the field, and certain she could make a difference in my life. But after many months of unsuccessful sessions, her youthful optimism and enthusiasm started to wear off. One day, as I was waiting in the lobby with Giff, Katrina burst through the glass door, arms swinging, looking more resolved than ever to make progress. She marched me back through the doors and down the hallway towards our usual room. Giff followed, and after I settled into the beanbag, she bustled off again, taking my five-pence piece with her. That day, we went through the usual exercises, Katrina frowning throughout, the double lines between her eyebrows creasing deeply. Tension filled the room, and I began to feel the heat rising on the back of my neck. My safe haven, Giff, was in the waiting room. Out of sight.

Katrina’s calm-on-the-surface demeanor finally began to crack, revealing the simmering irritation beneath. A look that told me she was not best pleased with me flashed across her face, then she bent down and paused for a moment before putting her hands firmly on my narrow shoulders. Then she started shaking me. For the first few seconds, I thought it was a game; I actually laughed at the motion of the shaking as it rocked my head back and forth on my neck. But my laughter made Katrina shake me even more vigorously, and my smile quickly vanished as her grip tightened and I felt the pinch of her finger pads digging into the skin on my arms. A desperate and exhausted figure, my flush-cheeked therapist finally let me go, her glasses now dislodged from their position by the sheer force she’d exerted while shaking me.

In truth, whenever I was alone with an adult who wasn’t a family member, I was fair game for that person to take advantage of me because I had no way to verbally report their wrongdoings. It was just that Katrina was the first person to actually do this.

While I didn’t have words at the time to describe what had taken place in room 3, I somehow understood that what Katrina had done was wrong. As I came back through the swinging glass door into the waiting room, I sprinted away from my therapist, nearly bundling Giff over as I crashed into her well-cushioned hip. She made a little “oof” sound on impact. I put out my hand in anticipation of the five-pence piece, and Giff handed me my reward. Then I turned back to look at my therapist, her cheeks still bright red. Perhaps she felt confident she could count on my silence. But she would one day be proven wrong. The words would eventually break through, just on a different timescale from Katrina’s.