I hadn’t heard of Randolph Bourne until my cousin, a writer, suggested I seek him out. It turns out that 2018 marks the 100th anniversary of Bourne’s death. He was a wunderkind among American intellectuals, one of the country’s leading social critics, and a pioneer for people with disabilities - including me.

My ignorance of Bourne was embarrassing, because I have also written about my physical handicaps. When I was eight years old, I was diagnosed with a brain tumour and other ailments, and for the past 21 years have lived in a wheelchair.

Bourne’s troubles began at birth, in Bloomfield, New Jersey in 1886, when his face was mangled by misused forceps and an umbilical cord that wrapped around his left ear. When he was four years old, he contracted tuberculosis of the spine, which led to the stunting of his growth and a hunched back.

Bourne, whose family lost everything in 1893, was abandoned by his alcoholic father, and grew up impoverished with his mother. After graduating from high school at 17, he was scheduled to be a member of Princeton University’s class of 1907, but could not afford to attend (even though his wealthy uncle would later pay his two sisters’ college tuition) and needed to help his mother with living expenses. So Bourne taught piano lessons; in between, he acquired his writing voice by being a proofreader and doing secretarial work.

Undaunted by years of discrimination, Bourne studied on a scholarship at Columbia University under famed anthropologist Franz Boas and renowned eduction reformer (and later pro-war adversary) John Dewey. While in college Bourne began publishing essays in the Atlantic. His rise was meteoric – but amid the acclaim he began to be “blackballed” because of the fierce anti-war essays he penned in response to the war raging in Europe.

This bellicose atmosphere was exacerbated by the Woodrow Wilson administration’s enactment of the Sedition Act of 1918, which made it a crime to criticise the constitution, government, or military. That year, at age 32, Bourne died of Spanish influenza, during the infamous pandemic.

After reading his early essay The Handicapped – By One of Them, published in the Atlantic in 1911, I observed Bourne and I to be kindred spirits. An impassioned pacifist, his progressive politics would have made him a great millennial.

At a time when influential voices such as Helen Keller and HG Wells supported eugenics, and when cities including Chicago passed “ugly laws” that barred anyone who was “diseased, maimed, mutilated, or deformed” from public view, The Handicapped was a truly revolutionary essay. Bourne published it anonymously for fear of being “discovered”. When an Atlantic editor did just that, he abruptly cancelled a lunch with Bourne so as not to be seen with him.

What astounds me most is how emotionally prescient The Handicapped feels today. I’m not sure if this uncanny time-ghost is a case of history repeating itself, or simply evidence that little in society has changed for the disabled individual. I hope it is the former; I fear it is the latter.

In The Handicapped, Bourne explores the inner thoughts of a disabled person, the way the world perceives that person, and how a disabled person forms his or her identity. Throughout, he brings up the lack of confidence that is endemic to disabled individuals, describing how, as a young person, he felt out of place “when the world became one of dances and parties and social evenings and boy-and-girl attachments – the world of youth”.

Bourne concludes that “admiration and gayety [sic] and smiles and favors and quick interests and companionship [are] only for the well-begotten and the debonair”.

I can attest to this. Insecurity is why I befriended the popular kids in high school, instead of gravitating towards the outsiders I had more in common with. Insecurity is why I say “sorry” when there is no need to. It is also, at least in part, the reason I have never had a significant other – and the reason I don’t voice my opinion in a myriad of social situations, even though I have two degrees and have self-published four books. How could I be confident when, as Bourne points out, I have grown up in an environment where nobody has been very confident in me?

I am not referring to my family and friends – who have been supportive throughout – but rather a culture where disability-shaming is the norm. As an adolescent, I watched Damon Wayans mock disabled people with his character Handi-man on In Living Color. More recently, I’ve tuned in to see people with disabilities constantly dehumanised on Family Guy and Modern Family.

In film, it seems like every other villain has a deformity. The movies Million Dollar Baby and Me Before You are praised, despite possessing a subtext that people with disabilities should mercy-kill themselves so they are not a burden to others. Just last year, a presidential candidate appeared to mock a reporter with a disability, and 63 million citizens were comfortable enough with that act to vote him into the highest office in the land. No wonder I doubt myself.

It was with hesitation that Bourne republished The Handicapped in his 1913 collection of essays Youth and Life, because his anonymity would be no more. He renamed it “A Philosophy of the Handicapped” and placed it last in the collection because he knew it was his best, and that his disability was the driving force behind his political motivations.

‘Doors of the deformed’

Another theme in The Handicapped is that the deck is stacked against disabled people from the start, making it twice as difficult to achieve what an able-bodied person does, even though disabled individuals are already at twice the disadvantage.

“The doors of the deformed man are always locked, and the key is on the outside,” Bourne writes. “He may have treasures of charm inside, but they will never be revealed unless the person outside cooperates with him in unlocking the door.”

I can’t button my shirt, tie my shoes or pour myself a glass of orange juice – and this is all before I start the day. The world is still not designed to include disabled people: streets and sidewalks have potholes and tree roots; every friend, neighbour or business has at least one step at the entrance (or a “special” side entrance); accessible bathrooms (when there are any) are often insufficient in size, or occupied by an able-bodied individual.

Infrastructurally, we have a long way to go. But I think Bourne would be pleased with the progress we have made in daily living: from Dragon voice-recognition programs for disabled people to Motion Savvy UNI for deaf people to Kurzweil 3000 for the visually impaired, it is plain to see that a hundred years of technological advancements to aid the disabled have been nothing short of phenomenal.

Equally profound have been the landmarks reached in the medical fields. We are healthier than ever, curing illnesses at an exponential rate, and are improving the quality of life for all individuals. At what point, however, does the populous begin to show disdain for someone’s lack of health?

This inevitable disdain may have been the reason The Handicapped was overlooked by many historians compared to Boune’s pre-war political critiques. Since then, however, John Dos Passos has dedicated a chapter to Bourne in his modernist novel 1919, and The Handicapped was published in 2000 in Joyce Carol Oates’s collection of the best American essays of the 20th century.

My fear is that the public, instead of harbouring disdain, will become so besotted with medical advancements such as gene therapy and designer babies that those with disabilities will be edited out of existence, left to fade away like a dying language. I understand that new ailments will always arise and that disabilities will more likely change than be eradicated, but I believe this generation of disabled people must cultivate empathy by permeating every sector of society, because they may be the last agents of innovation and inclusivity before disability as we know it is gone from the public consciousness.

But there is a reason to be hopeful, I think – because of the able-bodied people around us. In The Handicapped, Bourne discusses his dependency on friends and how much they mean to him. Disabled people cannot win the battles for inclusivity and accessibility on their own; they need that person on the other side of the door. And, especially in the last decade, my spirit has been lifted by the public focus on the rights and humanity of every individual.

When I hear of an engineer building a new product to include or make life easier for disabled users, when an architect designs a stylish building or public transport system that has universal design, when couples decide to raise a disabled child with all their love instead of having an abortion or putting it up for adoption, I’m reminded that we are living in a socially progressive time – and that is not something to be forgotten.

A century later, The Handicapped is as relevant as ever. I wish someone had made me read it when I was young, to validate my experiences, confirm my confusion between how much of my character was moulded by disability vs personality, and to assure me that I was not alone in my struggle. The Handicapped is an essay that should be included in textbooks because it is so accurate in its depiction of the disabled experience: it would raise awareness for able-bodied readers, while offering solace to disabled readers.

In the last paragraph of The Handicapped, Bourne writes, “And if misfortune comes, it will only be something flowing from the common lot of men, not from my own particular disability.” These are freeing words that those with disabilities should heed and live by.

Whatever you do, don’t grow bitter at the world, even though you may have ample opportunity; know that maturing and finding self-respect may be a long process, no matter your age; and do not consider your life a perpetual effort in making the best of a bad situation – it is not. It is a chance to live and breathe and be happy.

Or as Bourne wrote: “Do not take the world too seriously, nor let too many social conventions oppress you. Keep sweet your sense of humor, and above all do not let any morbid feelings of inferiority creep into your soul.”

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