The Original Lifehackers

Have you ever found yourself working at the edge of your comfort zone, and been positively surprised about what resulted? In Upshift: Turning Pressure into Performance and Crisis into Creativity, I explain how and why this works, drawing on stories of individuals, groups, and networks that have been through the same process. From the Chinese herbologist who used ancient manuscripts to develop novel malaria treatments and won a Nobel in the process, to the “Pirates” who transformed NASA, and with it, the future of space travel, I show that Upshifters can be found in all walks of life, and everywhere around the world. Blending compelling case studies, cutting-edge science, and my own personal experience from over 20 years in crisis response, I set out the building blocks of Upshifting, as well as the six Upshifting styles that I have observed and documented in many settings around the world.

This excerpt is from my chapter on Purpose, one of the three essential ingredients of Upshifting, alongside Mentality and Originality. In social innovation practice and literature, disability has often been seen as a niche area: the focus of specialized efforts, but not of broad and deep relevance to efforts to address inclusion, equity, and justice. In fact, nothing could be further from the truth: People living with disabilities have harnessed creativity in the face of the constraints they faced and discovered new ways of thinking and acting that have been transformational for billions of people around the world. In doing so, they have challenged the ableist projection that people living with disabilities should be the mere passive targets of innovation efforts. In fact, through purpose-driven and creative approaches to improving their own lives, the “original lifehackers” have opened up new possibilities for every single person on the planet. They are Upshifters par example. —Ben Ramalingam

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Question: What do treatments for polio, touch screens, electric toothbrushes, and typewriters have in common?

Answer: They all came about thanks to the efforts of people with disabilities to overcome their constraints.

One of the most iconic Upshifters in history is the US president Franklin D. Roosevelt. With his iconic phrase “We have nothing to fear but fear itself,” he arguably brought Upshifting to an entire nation. But this was not simply because of his innate leadership and influence. Struck by polio in the early 1920s, aged thirty-nine, he was paralyzed from the waist down. After years of therapy, Roosevelt taught himself to walk short distances while wearing iron braces on his hips and legs, with a cane on one side and supported by a sturdy person on the other. This led Roosevelt to a lifetime of campaigning and fundraising for better preventative measures and treatments for polio, setting up what would become the National Foundation for Infantile Paralysis. 

It was originally funded by wealthy benefactors, but the incoming monies could not stretch to meet the considerable demands. During the Great Depression of the 1930s, the toll of polio on American children skyrocketed, and Roosevelt appealed to the general public, with a call for a “March of Dimes”: 

Those who today are fortunate in being in full possession of their muscular power naturally do not understand what it means to a human being paralyzed by this disease to have that powerlessness lifted even to a small degree. It means the difference between a human being dependent on others, and an individual who can be wholly independent. The public has little conception of the patience and time and expense necessary to accomplish such results. But the results are of the utmost importance to the individual. 

The public took his deeply personal appeal seriously, flooding the White House with a silver wave of almost three million dimes. Not only did this set the model for many other health fundraising campaigns in subsequent years, but the polio foundation would directly fund both the iron lung technology in the 1940s and the first successful polio vaccine in the 1950s. 

People with disabilities have long played a central role in transformational innovations, though they are frequently—and mistakenly—viewed as “inspiration” for these processes rather than active participants in them. The reality, as disability rights advocate Liz Jackson argues, is that people with disabilities “were the original lifehackers. We spend our lives cultivating an intuitive creativity because we’re forced to navigate a world that’s not built for our bodies.” 

A lifehack is a clever yet nonobvious way to solve a problem or do something, and lifehackers are people who “operate skillfully and inventively, moderating and adapting tips and schemes.” Life for many people with disabilities needs to be hacked by necessity: “[they] are often outstanding problem solvers because they have to be.” 

Extensive research points to myriad individualized and ingenious ways people address physical, social, and political aspects of living with a physical impairment on their own terms. Central to this is a sense of purpose. At the heart of many disabled innovators’ efforts there is an unwavering belief that even though their disabilities may be seen by some as negative and traumatic, they can also be a source of positive change. 

Roosevelt was no exception. At the entrance to his memorial in Washington, DC, there is a statue of him in a wheelchair, paid for thanks to the fundraising efforts of the US National Organization on Disability. On it is a quote from his wife, Eleanor, which states: 

“Franklin’s illness ... gave him the strength and the courage he had not had before. He had to think out the fundamentals of living and learn the greatest of all lessons: infinite patience and never-­ending persistence” (emphasis added).

This “greatest of lessons” is something that comes up time and again in research on how people with disabilities have overcome their impairments. Research in Italy on young paraplegics—generally people who had lost the use of their limbs due to accidents—showed that despite the sense of loss that the accidents generated, there were a large proportion of people who saw the event as presenting them with very clear goals and a clarity of purpose that came from the process of learning to master their new limits and impairments. As one of the young men interviewed put it: 

“When I became paraplegic, it was like being born again. I had to learn from scratch everything I used to know, but in a different way ... It took commitment, willpower, and patience ... As far as the future is concerned, I hope to keep improving, to keep breaking through the limitations of my handicap ... Everyone must have a purpose ... These improvements have become my life goal.”

In the disability lifehacker movement, such improvements see people spending time rethinking existing tools and approaches to enhance their usability, accessibility, and usefulness. The ingenuity of people with disabilities to solve the problems they face, by finding new ways to meet individual needs, wants, and capabilities, is remarkable. 

One hacker with dexterity issues was unable to pay for shopping because he could not hold his credit card firmly enough to insert it into a machine. He experimented with drilling a tiny hole in one corner of an old card, and looped a piece of fishing line through it. By putting his index finger through the loop, he was able to better grip the card between that finger and thumb, and therefore could pay for items. 

Another hacker found a way to integrate crutch holders into her bicycle so that when she finished cycling, she could seamlessly carry on walking. While these may seem like small-scale hacks, they can grow quickly.

Architect Betsey Farber, who had arthritis, came up with the idea for more comfortable kitchen utensils for her hands, with family members starting up the OXO utensils company in 1990 with fifteen items at a trade show. Sold for almost $300 million in 2004, the company philosophy still strongly echoes the disability lifehacker movement:

“We notice things. We notice pain points and pains-in-the-neck ... We see opportunities to improve a product or a process, or a part of everyday life, and we make things that make things better.”

If you are reading this on a digital device, and swiping through the pages, you have an original lifehacker to thank. John Elias, an engineering PhD student in the 1990s, found that his severe repetitive stress syndrome, caused by carpal tunnel syndrome, interfered with his ability to study and work. Working with his adviser, Wayne Westerman, he developed prototype touch screen technologies and established a company called FingerWorks. Steve Jobs’s Apple, Inc., bought FingerWorks in 2005, giving both Elias and Westerman senior engineering roles in the company. The advances they had made were used in the first iPhone touch screen, launched in 2007, which has since revolutionized how we consume digital information. 

In their purposeful and creative approach to improving their lives, disability lifehackers like Farber and Elias have opened up new possibilities for the population at large. Key to the super-successful disability lifehacks has been how they open the door to entire populations of new users who were previously locked out of markets by making the benefits they provide easier, faster, or cheaper to access.

Once they find themselves in a mass market, these products give more consumers access to the benefits originally designed for and by people with disabilities. In some cases, as with the touch screen, disability lifehacks have created and transformed entire industries. In other cases, the impact is more niche but still significant. For example, people with disabilities campaigned hard for accessibility technologies such as captioning on TV programs, films, and social media that have since become ubiquitous. Studies show that making information more accessible and easier to read for partially sighted and blind people has also benefited people from ethnic minorities and people from older generations who might find it easier to read than to understand words verbally.

My own experience of arguing with my mother about having subtitles on or off when we watch TV together is not unique. Harnessing their creative capabilities more effectively means that the needs and opportunities of people living with disabilities can be better met.

Given that in the US alone there are sixty-one million adults living with disabilities, this is not just about the considerable impact on quality of life, but also a significant market to be tapped into. Moreover, as several of the examples above illustrate, scaling up disability lifehacks can have a wider transformative effect.

This happens materially, in terms of bringing those same benefits to the wider population. But greater involvement and engagement of people with disabilities in innovation efforts will also help to overcome the “them and us” gap that still exists across society, which sees those living with disabilities as different from and lesser than the norm and underpins the severe discrimination they continue to face around the world.