Michael’s Fingers

How people live without protein

April 2004, London

I am sitting talking to Sean, a 17-year-old working-class kid from Handsworth, a notoriously tough area of Birmingham in the UK’s Midlands. His speech is strangely inarticulate and slurred, his accent heavy and laced with slang—original Jamaican patois mixed with English street. I have family from Birmingham and know the nasal dialect, but even I am struggling to understand and keep up.

What I do understand is that Sean is hiding something. He has a condition known as Phenylketonuria, a serious metabolic disorder that we are studying for a client of ours. They manufacture a food supplement which helps moderate the effects. PKU, as it is known, is an inability for the human body to process any form of complex protein, meaning that the sufferer is resigned to a life of bland, low-protein food: no red meat, chicken, cheese, nuts, or legumes. Staples such as bread, pasta and rice have to be carefully monitored. Most are simply impossible to digest.

The product that those with PKU are forced to consume is a powdered food supplement, devoid of any texture and flavor. It is chalky and vile—like a sulphurous barium. Buoyed with confidence and false bravado, I chugged it down in our clients’ headquarters and immediately vomited it all over their expensive conference table. A stone silence followed.

Living with this is a bleak existence, and for the first 16 years of life, adherence to a strict regimen is critical or things go horribly awry: severe mental retardation, brain-function abnormalities, microcephaly, mood disorders, irregular motor functioning, and behavioral problems such as ADHD can set in. I wonder if Sean is trapped somewhere on this spectrum.

After twenty minutes of talking, about music mainly, he visibly relaxes. I am diabetic, so I tell him how that sucks for me and how hard it is to deal with food and eating out—being normal. I am slowly gaining his trust.

I finally ask him about his PKU. He tells me it is “a big fucking stress, this thing.” I ask why. He sighs and tells me a story about being at school a few years previous, when he was 12 or so—tough years for anybody, never mind an inner-city youth with a life-threatening condition. Sean’s disorder seemed to endlessly amuse his classmates, who called him a ‘fag’ for having to eat specially prepared sandwiches of cardboard PKU bread that his mother had made for him. He wanted to be cool like the other kids and bunk-off to the local burger joint to eat greasy food and chips, and drink Coke. Instead, he ate his lunch quietly, in a corner of the schoolyard, trying to be invisible.

One day a group of local lads had decided to see what would happen if they held Sean down and forced him to eat a kebab—a mound of fat, meat from some God-knows-what-animal, and grease wrapped in bread. They wanted to see, Sean said, “if his head would explode.” They shoved the food down his throat and then pinned him to the ground, watching expectantly. Nothing happened. Turns out PKU is culmulative and takes a long time to show. Bored, they slumped off. Sean wasn’t physically scarred by the event, but mentally he was devastated—in constant fear of seeming different or weird from then on. He desperately needed their approval, so from then on he joined them every day at the burger joint, throwing away his PKU food.

Having no idea that this was happening, his mother—a single parent, uneducated, hard-working, and ill-equipped to begin with—watched her son’s grades diminish, his attention increasingly waver, his mental processing speed slow, and his mood swings worsen. Eventually she took him to the doctors, who found that Sean’s enzyme levels were way off and that retardation had already started to set in.

Talking to teenagers such as Sean unveiled story after story like this. One boy of about 12, Michael, showed me his hands. He had raw, open blisters on the tips of both his thumbs and forefingers. I asked him what they were. It turned out that he could not ingest the powdered food formula because it tasted so bad, and like me, made him throw up. That being the case, he had no choice but to take pills: 40 of them, three times a day, totalling 120 pills. That’s over 800 pills a week.

The pills came blister-packed, so three times a week, he and his mother sat at their kitchen table and popped hundreds and hundreds of small tablets into a large bowl and then decanted them into small baggies to take to school. As with Sean, Michael’s peers had accused him of taking drugs, of being “a pusher,” so he had withdrawn and gone underground. When I first spotted him, my immediate thought was that he and his mother seemed more like peers than parent and child, strangely best-friendy. I realized listening to them that they were joined together, battling at the front lines on his behalf.

Sitting around with the PKU group at the end of that day, I asked them how they would like the products that helped them with this condition to look and feel. “Normal, nothing special,” said one boy. “Cool, like something from Nike,” said another.

The IDEO team had collected a bunch of packaged food on the table: health foods, exotic stuff from Japan, medical supplements, special sports protein products from the US, and as an afterthought, some “regular” stuff from supermarkets in the UK like candy, fizzy drinks, McDonalds meals, and potato chips. The kids immediately gravitated to the latter stuff. Not wanting to be singled out—held down until their heads exploded, or called “pushers”— not wanting to be anything other than kids.

I remember writing in my notebook that evening: “Not ‘designed.’ Normal.”

The final product

Together we came up with a very simple product. Six months later, after many designs, refinements, iterations, prototypes, and rounds of research, it hit the market: a small, school-lunch-box-sized squeeze-bag of highly concentrated product, with intense flavors that they helped us select, and pop-colored packaging in neon green, pink, and orange. It looked cool, like an energy or sports drink, with a small nozzle so you could shoot the product down your throat, avoiding the gag-reflex that the sulphurous smell brought.

It allowed kids who couldn’t previously tolerate the product to finally take it. It won a design award. It drove sales and market share. And when the client we designed it for eventually sold the company to a large conglomerate, the CEO’s called it out as a success story in his parting speech.

All of that was great, of course, but it wasn’t why we did what we did. It was the blisters on the ends of Michael’s fingers, and him telling me that he really wished he could learn guitar, that drove this project. Maybe now he will be able to play. And though I haven’t spoken to Sean since, I think about him finding his way through technical college, where there are no more thugs, where his mother prayed he would go, and making her proud.