1
When I first came to the US as a graduate student in 2017, I was eager to improve my English in any way possible. One evening, on a whim, I created accounts on several job search websites, uploaded my resume, and started submitting applications. Whenever I snagged an interview, I used the opportunity to practice my English.
That was the first time I ever went job-hunting in the US, and I’m grateful that I didn’t actually need a job because if I had, it might have been a very different experience. As it was, I had a great time. Once, I sat through a thirty-minute interview for a job delivering pizzas. I aced it, apparently—until the recruiter asked me whether I had a valid driver’s license, which she didn’t do until she’d gone through all her other questions.
“Not really,” I told her. “I’m totally blind. I don’t think they would give me one.”
She was embarrassed, but also confused. Why had I applied for a job that required driving if I couldn’t see?
“Well,” I told her, “it didn’t say that I have to have eyes in the job description!”
2
I was joking, of course, but the truth is, I applied for lots of jobs that required sight that year, and it wasn’t always as obvious from the job description. Most companies won’t say “requires vision: if blind, please don’t apply” in their job descriptions for fear that job seekers and activists will accuse them of discrimination. But is it really better for those of us who are blind and use screen readers to spend hours and hours applying for jobs that we can’t do, without even realizing it, when there are so many jobs that we’re entirely capable of doing?
This is just one of many examples of disability being shrouded in taboo, ostensibly to protect the rights of individuals, but with damaging consequences. Organizations contribute in specific ways, usually motivated by their fear of lawsuits and their desire to manage their reputations, but more fundamentally, this dynamic is rooted in the disabling attitudes, belittlement, and stigmatization that people with disabilities face every day in just about every society.
Nobody wants to be considered less-than. Those of us who can hide our disabilities often do, for it seems like the only escape from discrimination in the form of ridicule, pity, and, on the professional front, refusal to employ us or provide accommodations. What we don’t always realize is that hiding tends to backfire. I personally know many people who’ve chosen not to disclose their invisible disabilities to their employers, only to find themselves saddled with reputations as lazy, unreliable, awkward, or unstable. Disclosing their disabilities wouldn’t necessarily have prevented this from happening, but at least it would’ve given their coworkers a chance to recognize them as dedicated individuals navigating disabling environments without accommodations.
And then there are those of us whose disabilities disclose themselves. We have no choice but to prove ourselves and fight for our rights and accommodations openly. Frankly, the culture of shame and concealment only makes that fight harder.
3
“Shame” and “concealment” are unpleasant words. In public, most people will invoke their right to privacy instead of admitting that they’ve gone into hiding, driven by an all-too-realistic fear of discrimination instilled by disabling attitudes. Too often, though, exercising this right, which was first conceptualized in a pre-digital age, merely serve as an imperfect means of preserving one’s dignity—albeit at a cost.
“Privacy” is a complicated construct. There are certainly situations where maintaining an individual’s privacy is paramount, whether from intrusive neighbors, or from members of hostile ideological factions, or from the goons of a predatory state. But there are also situations—and, increasingly, these are the norm—where we “sell” our personal information in exchange for access to platforms and services. Whether we identify as disabled or not, we all agree to the terms and conditions before signing up for a streaming account, or downloading an app, or installing a new update. We almost never read the terms and conditions, and even when we do, though we may find certain data-farming practices objectionable, we usually go ahead and consent anyway.
Implicitly, we understand that data is currency, and nothing is free. The real question is whether what we get back is worth what we give. To make this calculation, we must consider all the factors logically, without interference from stigma and shame.
4
People who identify as disabled and non-disabled alike use digital assistants like Siri, Alexa, and Google Home. We know that they harvest our data, but we use them anyway, not just because they make life easier and more convenient, but also because they’re safer and more reliable than human personal assistants. (They can’t replace human relationships, of course—just certain types of professional relationships.)
For those of us with disabilities, who often rely on our personal assistants, this is a huge advantage. What we gain in safety, we pay for in privacy. What we gain in knowledge, we pay for in data. Still, this data’s often used to optimize those services, which benefits us in the long run. There are surely fringe cases, but for most people with disabilities, this is an excellent trade-off, even if it means that Apple, Amazon, Google, and the companies to whom they sell our data find out that we have disabilities.
Likewise, I believe that we’re usually better off disclosing our disabilities to current or prospective employers. Yes, there are risks involved. Yes, there are costs. We may face discrimination, or even termination—but the truth is, we’ll face those things anyway.
If we disclose our disabilities in the workplace, we can establish honest relationships with our colleagues.
We can show that we have nothing to be ashamed of, nothing to hide.
We can reduce the likelihood of being asked to do things, like driving to someone’s house to give them a pizza, that we’re physically unable to do.
Finally, we’ll be able to make a stronger case when we need accommodations. An employer who’s reluctant to purchase expensive Braille books and screen reading software for an employee who requests them but doesn’t identify as blind is, in my opinion, acting reasonably. An employer who’s reluctant to provide those same accommodations for a person who identifies as blind is clearly engaging in discrimination, making the situation more clear-cut and easier to navigate.
The same logic can apply to websites that ask us to disclose our disabilities. Yes, we’re giving up a bit of our privacy, but if doing so supports the optimization of the site and makes it more accessible, then isn’t it worth it? Especially considering that the same information has likely already been harvested, shopped around, and sold by many other digital platforms and service providers? Given that our personal information is already in circulation, isn’t it better that we get something for it?
I propose that instead of continuing to view privacy as an absolute right, we reconceptualize our personal information—specifically information about our disabilities—as a resource that we can deploy strategically in order to secure the accommodations, normalize the social practices, and catalyze the cultural shifts that will benefit us all in the long term.
If we continue fighting about our abstract right to privacy, we’ll end up with the worst of both worlds: our personal information will be extracted and exploited without our knowledge or consent, even as we continue to conceal our disabilities in order to survive. On the other hand, if we force society to face its fears head-on, we have a better chance of normalizing conversations about disability, securing the accommodations that we need, and making the world more accessible for all.