Earlier this month, the world lost a brilliant man. Undeniably, Dr. Stephen Hawking was a true visionary who deserves immense attention for his countless accomplishments. Yet, as a disabled woman, I am deeply troubled by the rhetoric that has encompassed the narrative following Hawking’s death and believe that it is emblematic of a much larger problem: how we, as a society, talk about disability.
Time and time again, we see what the disability community refers to as “inspiration porn,” a term first used in this way in 2012 by activist Stella Young. Inspiration porn occurs when stories “objectify one group of people for the benefit of another group of people.” In other words, people with disabilities are regarded as inspirational merely for living their lives in ways that nondisabled people are not.
Nearly immediately following the death of Hawking, tributes flooded in from across the globe. Regrettably, however, most of these eulogies were riddled with ableist terminology, which many in the disability community found offensive. Gal Gadot of Wonder Woman, for example, came under fire for tweeting, “Rest in peace Dr. Hawking. Now you’re free from any physical constraints. Your brilliance and wisdom will be cherished forever.” While the intention of her tweet was surely innocent, her suggestion that he was not “free” prior to his death perpetuates the belief that disability constrains people, which it does not. Indeed, Hawking saw himself as “free,” once saying, “Although I cannot move and I have to speak through a computer, in my mind I am free.”
Similarly, a meme portraying a man—presumably Hawking–walking toward the stars with his empty wheelchair in the foreground is continuing to make the rounds on social media and in other outlets. This meme sends the ableist message that Hawking’s death allowed him to walk among the stars without his wheelchair. This offensive sentiment also disregards the fact that Hawking was an atheist and did not believe in an afterlife.
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Erasing or overlooking Hawking’s disability ignores an important part of who he was. In 1963, Hawking was diagnosed with amyotrophic lateral sclerosis, commonly known as ALS or Lou Gehrig’s disease. ALS is a progressive disability that affects the nerve cells in the brain and spinal cord. Eventually, Hawking lost use of all of his limbs. He used assistive technology to communicate and a power wheelchair to move around.
While being a disabled person certainly was not his only identity, it was a part of him and should not be ignored. Yet, since his death, the media’s message—and society’s as a whole—has been that he accomplished so much in spite of his disability, entirely ignoring the likelihood that many of his achievements were because of his disability. Hawking himself noted the ways in which his disability benefited his work: “My disabilities have not been a significant handicap in my field, which is theoretical physics. Indeed, they have helped me in a way by shielding me from lecturing and administrative work that I would otherwise have been involved in.” To truly honor Hawking, it is important to recognize every part of him, including his disability. To deny that, as he acknowledged, is to deny an important part of him.
Of course, the problematic way disability is portrayed is not simply limited to the coverage of Hawking. As I previously wrote for Rewire.News, the media’s coverage of disability activists protesting Congress’ attempts to repeal the Affordable Care Act was also riddled with ableist undertones. Headlines such as “Police drag away protesters in wheelchairs from Mitch McConnell’s office” appeared on the front pages of hundreds of websites and newspapers, coupled with photos of people who use wheelchairs being arrested.
Yes, they were arrested. However, the attention should have been on the issue they were protesting: proposed cuts to Medicaid, which would have resulted in the elimination of important disability services. Contrary to what was depicted, people with disabilities have autonomy and made the decision to protest because the issues were too important not to. Like the responses to Hawking’s death, nondisabled members of the public focused on the individuals’ wheelchair use rather than on their entire lives and their message.
Part of the way to address this kind of “inspiration porn” is through representation. But in the process, it is vital that the narrative not be ableist. Earlier this month, for instance, Rewire.News writer s.e. smith wrote an article about Gerber’s new “spokesbaby,” Lucas. Some praised Gerber’s selection because Lucas has Down syndrome. However, as smith noted, “This announcement could have been paired with a discussion of moves happening on the corporate level to ensure that people with Down syndrome like Lucas can grow up to lead better, fuller lives in a society that explicitly includes them.” Yes, Lucas is adorable (not because of his disability, but because most babies that age are). Nevertheless, you cannot merely slap a picture of a disabled person on the label and be done. True inclusion requires asking questions about what representation means in context: Does Gerber actually employ people with disabilities? How do they support people with disabilities and their families?
Shifting the conversation about disability also means including actual disabled people at the table. For instance, Disabled Writers is trying to change the conversation about disability by connecting disabled writers with editors. This is critical to changing the narrative and appropriately reporting on issues facing our community as well as allowing for more diverse perspectives.
Notably, just last week, Apple proposed 13 new emojis with disabilities. Emojis may seem trivial, but I see it as a sign the tides are slowly turning and disability is becoming recognized. As Apple noted, “Currently, emoji provide a wide range of options, but may not represent the experiences of those with disabilities. Diversifying the options available helps fill a significant gap and provides a more inclusive experience for all.”
As we have witnessed since Hawking’s death (and many times before), nondisabled members of society—including media outlets, politicians, and the general public—are so focused on assuming disabled people want to overcome their disabilities that they neglect to recognize disability as an identity. Likewise, society has a tendency to overlook the strengths that come with disability.
I have experienced this firsthand. I was born with arthrogryposis, a physical disability that affects my joints and muscles. I have limited use of my arms and legs. I am a power wheelchair user and depend on others for most personal care tasks. Throughout my life, I have encountered people telling me more times than I can count how “inspiring” I am for “overcoming” my disability. I have not overcome my disability, nor would I want to.
As proclaimed in the Individuals with Disabilities Education Act, “disability is a natural part of the human experience.” Indeed, one in five people in the United States—20 percent of the population—have a disability. Anyone at any time can become disabled, and most people will acquire a disability if they live long enough.
Being a disabled woman is an important part of who I am, and it is not something I am ashamed of. It’s time nondisabled people realize that too.