No one can deny that people with disabilities are treated by society at large much differently than able-bodied ones. Social media activism over the past couple of years has given voice to movements like #StopAbleism and #TheAbleistScript, where people with a wide range of disabilities have articulated comments and ideas that have been whispered around us, shouted into our faces, or become internalized in our own lives. This is not to say that the situation is hopeless – far from it – but though a lot of work has been done, we have a long way to go to be treated as equals in a world that simply doesn’t know what to do with us, and occasionally doesn’t seem to care if we speak up for ourselves.
But, you see, my dear readers, there’s a flip side to this equation. If we don’t hold ourselves up as true equals, then how dare we expect others to treat us as such? I’m not talking about receiving accommodations so that we can access the same materials, buildings and facilities as our able-bodied classmates, coworkers and fellow consumers; I’m talking about feeding into stereotypes of low expectations, social awkwardness, and refusing to engage that wider world that doesn’t quite see us as human. Be mad at me if you want, but someone’s got to pull no punches. You and I can be contributors to our own experience of ableism, discrimination, and inspiration porn. Here’s how.
Over-sharing of the Mundane: Low expectations
Blame the selfie if you want, but over the past few months I’ve seen a ton of blind people (in particular) posting frequent videos of themselves working their guide dog, taking the bus or walking through Target. Many of these are not product education, technology or skill tutorial, or even informational videos, which appear to be extremely popular these days, but they’re just chronicles of ordinary people doing ordinary things. Maybe sighted people do this… I don’t know. Or perhaps I have friends online who have better things to do with their time – like make cool bicycle-repair tutorials, or share awesome and obscure tunes from Youtube. Sure, everyone shares pictures of the biggest chocolate cake they’ve ever seen, posts videos of their dog going crazy seeing snow for the first time, or vents about their bad day… that’s all part of the human experience in the social media world. But I’ve seen many videos filmed by blind people that are just… life! And they share it loudly and widely as though it’s a HUGE accomplishment to show the world how their guide dog takes them through a local pharmacy. I’m not against sharing life experiences – the happy, the sad, the ones that make you raise your eyebrows – but these videos about how courageous you are for taking a bus in a new neighborhood (while it might be very true for you) perpetuate the idea that all blind people feel and act this way… and WE DON’T! If you need support and encouragement, YES, reach out and grab it with both hands. If you’re a talented singer or musician, post those videos, by all means… but blindness has nothing to do with your talent. Video is a powerful medium and, for good or for ill, it shows the things that we’re truly proud of in our lives, and frankly I want us to be proud of accomplishments because they are accomplishments in and of themselves. As my new friend Nicole recently wrote so eloquently:
Think about the larger, sweeping, massive ramifications of allowing someone to think your day to day is amazing, inspirational, courageous. Think about the fact that you’re not just allowing it, you’re encouraging it by creating and posting videos or articles that evoke EXACTLY that response.
Social Awkwardness: We Just Don’t Belong
Everyone has foibles, eccentricities, preferences, and quirks. It’s all part of the human experience. But perhaps because we’ve never been taught, many blind people fall into habits that are at best odd and at worst damaging to the rest of us. We should be comfortable with who we are, neither denying our blindness nor emphasizing it so much as to make us look like toddlers who can’t care for ourselves appropriately. A recent hashtag on twitter has become a “parody” of sorts, claiming to represent the “funny” side of blindness.I’m not against laughing at the funny things we’ve sometimes confused with others, but I have never found jokes infantalizing us (“discovering” we’re dressed in matching clothes!) or emphasizing blindie-clique dynamics (see below) funny. In fact, they perpetuate the idea that we’re just too strange and awkward to be taken seriously, and who wants to hire or educate someone so awkward or “other” for anything other than than a source of inspiration?
Social Isolation: Using Sighted People for their Vision
I am by no means belittling the support of others who share the journey of blindness and visual impairment; in fact, I posted about how awesome and supportive it can be not that long ago. But hiding ourselves amongst exclusively those same people does little to dispel the idea that we are somehow “other” and too “unique” to be bothered connecting with on any meaningful level. perhaps out of necessity (Canada has a small enough blind population that this is possible), or perhaps because I am social by nature, my world has been blessed with terrific friends, blind and sighted. But I notice many blind people who never ever seem to socialize much outside the blind community, with sighted people primarily filling in the role of driver or shopping assistant. This isn’t to say that I would turn down a ride offered by a friend, or indicate that I like grocery shopping alone (I don’t). Nor am I indicating friendships can’t spring out of such arrangements. But just as we wish to be viewed as people, we need to treat others in this way. Keeping exclusively, even primarily, to our social blindie cliques and relegating sighted people into primary positions of driver or guide is no better than us being confined to the role of musician or couch potato. In fact, it’s worse; we know how crappy it feels.
Abusing the System: Accommodation at All Costs
I’m a firm believer in computer programs, web sites, and buildings being accessible to people with disabilities. I also believe that it’s essential for workplaces or educational institutions to make all accommodations possible to include us on the job site or in the classroom, not only for our benefit, but for theirs. But it is also our responsibility to ease the way forward for our employers, our service providers, and our professors.If we can make the available mainstream technology work (and much of it works well), then it’s up to us to do so. Using exclusively specialized technology – a note-taker rather than a computer, for example – keeps the barriers to education and employment higher than they need to be, and perpetuates the idea that we’re just too hard to accommodate, so why should an employer or university bother? In many developed countries, it is not uncommon to receive some funding to cover what can be extreme costs of technology. I got stuck in a catch-22 system, where I couldn’t get funding without a job, and I needed that technology to be able to obtain a job. This is sometimes the case in other parts of the world, but sometimes people can receive funding before getting that job, and there are drawbacks to that system as well. Thankfully, it worked out for me, but it makes my blood boil when I hear about people who receive technology for simply searching for jobs who don’t obtain employment due to lack of serious effort, who don’t return loaned equipment, and sometimes don’t even use the technology anymore. It’s important for us to obtain the assistive technology that we need to be able to work, to study, to learn; but if it is not used to those ends, it’s time to be realistic and pass it along to people or agencies who are struggling for basic supplies. Hanging on to unused technology (particularly if it’s been funded) is expecting the preferential treatment we’re trying so hard to avoid. In many developing countries, access to even basic literacy tools like braille writers is almost impossible… and yet I hear of some people who get a ton of technology and don’t even bother looking for work. Stop it! Your complacency and entitlement makes it harder for the rest of us who actually need that technology to be productive. And to say nothing about obtaining employment…
Making Excuses: “Because I’m Blind!”
I am not one of those people who thinks everyone should be able to cook a 4-course meal, have a spotless house, and never ever ever ever EVER ask for help with anything. Frankly, living with the expectation of perfection is exhausting, and no sighted person is held up to those standards either. But it drives me up a wall when I hear the excuse “I can’t [insert activity here] because I’m blind.” OK, even though three years ago a blind man tested out Google’s self-driving car, the technology isn’t quite there for us to drive completely independently. Aside from that, blind people have done tons of great things – big and small – all over the world, from raising families to opening businesses to studying subjects they love. The possibilities are endlesss, truly, even if not all of us have the inclination to climb a mountain or open up a restaurant. But if you aren’t a good cook, or don’t like to clean, or don’t feel safe sky-diving, that’s your humanity talking; it is NOT because you’re blind. Don’t even go there!
Conclusion: Cleaning out the Dirty Laundry
I hate the idea that I am an ambassador for the blind, and yet, in some ways, I really am. And so are you. It’s a fine line between expecting perfection of ourselves and allowing low expectations to dictate the course of our lives. Both are extremely damaging and exhausting, and really not realistic. Ultimately, though, we can’t expect equal treatment until we avoid the pitfalls listed above. I never would’ve written this post had I not seen so many instances of this both in-person and online. And if I’m truly honest with myself, at points in my life I’ve even engaged in some of these problem mentalities and behaviors. But we can move on from this place. We can share our lives from the focus of our humanity, not our blindness. Even if it’s painful, we need to take a look around us and notice which of our behaviors make us stand out unnecessarily. Many people wish to befriend us, and it’s up to us to open ourselves up to the sighted world to challenge us and befriend us, not just serve us. While we still are viewed as needing the right to access, stop confusing our rights to access with abusing the ability to use the supports that are supposed to make it happen. And we must stop using our blindness as a license to be lazy and have everything done for us, because if we don’t, we’ll be back where we started, making videos of us sitting on the couch and writing blog posts…
I won’t pretend any of this is going to be easy. But I hope that confronting some painful realities about ourselves can spur us all to make some necessary changes. Is discrimination and ableism a problem? yes, it is. But sometimes, we’re the problem, and in those instances – and only those instances – we need to get out of the way and give the naysayers, the ableist and the discriminatory no valid reason to think that we’re useless, lazy, manipulative or uneducated. After all, as much as it’s up to us, let’s give them no valid reason beyond their own prejudice to discredit us… then they can look in the mirror and realize how they’ve contributed. But right now, I think it’s our turn…
*** UPDATE: Thanks to John and Brandon for tearing this post apart in a marathon podcast. Because of this, I have kept this post primarily intact, but did change a line you rightfully found offensive. I appreciate your opinions, and the fact that overall they came from a place of respect, even if you disagreed with me. This blog is nothing without readers and friends. I love constructive dialogue, and am willing to listen to any who respectfully disagree with any of my opinions. So, please, I welcome any further dialogue on this and other topics related to blindness, confidence, life…