Tag: NFB

It’s Meet the Blind Month: Let’s Talk About That

October is National Disability Awareness month, or as the National Federation of the Blind calls it, Meet the Blind Month. Meet the Blind month always gets under my skin as a name, and today I want to talk about why. I’m also going to talk more generally about how you should talk about blindness with blind people.

As I said last week, these are my views. I do not purport to represent all blind people. I’m sure there are many who disagree with me. And I certainly don’t represent all people with disabilities. Further apologies if this post is a bit scattered. I’ve been pretty sick all day and I’m not at my best organizationally-speaking, but I wanted to get this out there.

So, Meet the Blind Month. I understand the point. I do. A lot of my friends will put up posts or statuses answering some common questions they get about their blindness and inviting their friends and followers to ask more. In case I haven’t been clear, I’m all for that. But I find the name Meet the Blind Month to be frankly demeaning, doubly so because  it comes from an organization meant to empower the blind through increased independence. I am not some rare specimen in a petting zoo to be put on display in October. (Oh look, a blind Jameyanne. Look how it picks out matching clothes. How fascinating.) More importantly, I dislike the implication that the public doesn’t have to interact with the blind any other month of the year. We don’t just come out of the woodwork in October.

Honestly, though, I don’t really like National Blindness Awareness Month or National Disability Awareness Month, or any of the other myriad names we have for the same thing. I understand that, as much as I would like our society to be at a point beyond awareness, we aren’t. Most people have never met or interacted with a blind person, and blindness can make people uncomfortable or frightened. So yes, we want to build awareness about blindness and what blind people can do independently, but I wonder if we should go beyond that. Why not seek to build awareness by seeking more than awareness? Why not call it Blindness Rocks Month? Or something less terrible but you get the point. Let’s not just be aware of blindness. Let’s celebrate the accomplishments of the many incredible blind people out there who have done great things, not despite their blindness but with their blindness and because of their blindness.

Terms like “awareness” sound a lot like other ways sighted people try to avoid the issue–perhaps part of the NFB’s purpose behind rebranding the name (Meet the Blind Month is still terrible). So I want to talk about how to talk with a blind person. This has been coming up in my life a lot lately with my transition to a new job and all the new people I’ve been interacting with.

I identify as blind. Not visually impaired or visually challenged, not low vision, and certainly not sightless. This is an intensely personal choice. I can see light and color with my left eye. I can even read print—if it’s 72 point font and my nose is pressed to the screen or the page—but my vision is not my primary tool for navigating the world. I read Braille. I travel with a Seeing Eye dog, I primarily use smell and taste to judge if a meal is finished cooking. I know when to cross streets based on auditory cues. So I’ve found that blind more accurately describes how I use my vision and what I might need in any given situation. The other descriptors sound like I am missing something, and that is the exact opposite impression that I want to give. This post on using the word “disabled as” opposed to “special needs” does a really good job of explaining why some disabled people prefer to identify as disabled or as their specific disability. It’s a great read and I highly recommend it. Terms like “differently abled” or “special needs” might seem like they’re more politically correct, more humanizing, or more accepting than other options, but they in fact highlight differences and make it harder to fight for disability rights, which are at their core equal rights.

Another note, I used to be big into person first language—“a person who is blind” or “a person with a disability”—but lately I’ve found that to be clunky and awkward, and I don’t mind referring to myself as a blind person. I don’t feel as strongly about this and my choice is more about how grammatically awkward person-first language feels to me.

Another big thing for me is I hate it when people try to skate around visual words in a conversation with me. I speak the same language as you, and you don’t need to alter what you were going to say because I can’t see. Expressions like “see you tomorrow” are not going to offend me. You can totally ask if I saw a movie or if I watch a TV show. In fact, trying to avoid visual words just makes it awkward for everyone.

Again, my choice of how I identify and what language I like to use is entirely mine and entirely personal. Other people identify differently. Other people find some language ableist that I don’t mind. I have a friend, for example, who finds the use of “blind” to mean “ignorant” in research studies to be ableist. I don’t have a lot of experience reading research papers like she does, but in regular conversation I don’t mind it. I also tend to make blind jokes and make fun of myself all the time, though I know other blind people who would never joke about it.

If you’re curious, I recommend checking out this list of ableist language. It’s pretty comprehensive. As the author says, not everyone is going to be offended by all of these, and some will claim the terms for themselves as their identity, the way I claim blind as my identity. But it’s worth being aware of the roots and meanings of some of these terms and phrases. Even I was surprised by some.

I can see how this can be complicated terrain to traverse as a sighted person, but sighted people have their own preferences for identity and language too. Just like sighted people, all blind people are individuals. Don’t assume that just because I prefer to go by blind, the next person you meet prefers blind too. If you’re interacting with a blind person, take your cues on how they identify or what language they prefer from them. I always try to be clear about my preferences when it comes up, but if someone isn’t being clear, don’t hesitate to ask. It might be awkward, but it’s respectful.

And speaking of questions, if you have any about this or anything else, let me know. I’m happy to clarify anything I’ve said here, and there are many more blind posts to come.

More Important Than Fear, or How to Dance Like No One’s Watching

I am sitting on a plane returning to Boston from Orlando, Florida, where I have just spent the most incredible week at the national convention of the National Federation of the Blind. (Note: I wrote this Wednesday but didn’t get to post until today.) I went to the NFB convention because I was a scholarship finalist, but I went with low expectations—worse than low expectations—negative expectations. And now I’m struggling to find words to describe what a powerful and transformative experience it was for me.

 

Here’s a little background for you. I was born blind. I have aniridia glaucoma, which means I don’t have irises (so my eyes can’t adjust to light and dark and I am extremely sensitive to bright light) and that I have higher than normal pressure in my eyes. I do have some residual vision in my left eye. I can see light and dark, shapes, and colors. I used to have similar vision in my right eye until three years ago, when the pressure skyrocketed, my retina detached, I lost the vision in that eye, and I was in so much pain it had to be removed. Now it’s like there’s a big black hole where my right eye used to be (at least in terms of what I see there). I would be lying if I said it was no big deal to me when I lost the vision in my right eye, but on the whole I’ve always been very comfortable with my blindness. I’ve talked about this before, but I want to reiterate it here. Because I was blind, I had a really hard time socially in middle and high school. Among other things, I could never tell where my friends were sitting in the cafeteria and would always end up eating lunch by myself. I thought, at the time, that this was fine with me, because I could use the time to read and write. It was only when I went to college and met friends who banged on the table and yelled for me to come sit with them across crowded rooms—without me having to ask—that I realized what I’d been missing. Just as it was no big deal to me that I’m a blind person, it was no big deal to my friends, and this was fabulous. I don’t think I ever made a conscious decision to do this, but I began distancing myself from my blindness, losing touch with my blind friends back in New England, throwing myself into any activity that someone even hinted might be difficult for me, and emphatically shooting down anyone who suggested I consider writing about my experiences as a blind person. Through social media, I saw many of my blind friends become enthusiastically involved with national organizations for the blind, such as the National Federation for the Blind or the American Council of the Blind, but I didn’t understand why they would want to do that. Personally, I never posted anything about my blindness myself except to make a joke or to tell funny stories about Mopsy. That wasn’t how I wanted the world to perceive me. And then, as you all know, I went to Italy, where almost everyone saw me as blind and nothing else. It was in Italy where I realized that I wanted to go to law school and become a disabilities rights lawyer. By advocating for my own independence, I showed everyone in Assisi that a blind person could be independent. I changed minds, and at the end of my year in Italy, people were coming out of the woodwork to tell me that they knew a blind person and they were going to tell them everything I’d done. I thought, if I made such a difference just by existing, what could I do if I tried to make a difference? It was also in Italy where I decided that I wanted to see more representations of people with disabilities in fiction, and that if I wanted to see that, why shouldn’t I be the one doing the representing? Who better is there? At the same time, I was, and still am, honestly, uncomfortable with the idea that I will be perceived as a lawyer whose interested in disability rights just because I’m blind or as a writer who includes characters with disabilities because I’m blind.

 

Last March, I applied for a National Federation of the Blind scholarship. I was hesitant to apply, because I’d heard that the NFB was radical, militant even, and most of all that they are against guide dogs. Since my experiences with Mopsy in Italy were the focus of my scholarship essay, I was sure they would reject me. But my parents encouraged me to apply anyway. Law school is expensive, guys, and as my parents put it, money is money. So I applied, and I won. And I spent this past week at the national convention. As I said, I came with negative expectations. I planned to take the money and run for the hills. I planned to spend the convention making snarky tweets about what happens when three thousand blind people swarm through a hotel lobby.

 

I did make some snarky tweets, because let’s be fair, with three thousand blind people, the jokes are rife for the picking. But I very quickly found that I did not want to stand aside and joke around, and I certainly did not want to run for the hills after convention. The people in the NFB are fighting for causes I am passionate about. They recognize that our society has made tremendous progress towards equality for the blind, but they also recognize that there is still so much to be done, and they are continuing to fight for that equality. Sure, there are definitely some things I don’t agree with, but on the whole, it just makes sense, and turns out most of the things I was told before I went to convention about the NFB were exaggerations or downright wrong. NFB is not against guide dogs. The first lady is a guide dog user. NFB does not believe in complete and total independence at all times. They believe it’s important to know how to be independent and to know that you can, as a blind person, navigate the world without assistance, but it really comes down to knowing what’s best for you in your daily life. They aren’t sue-happy. Rather, they are pursuing change through means that are often the only way to force large corporations to take action. And they are not fighting with Google over the self-driving car because they don’t want blind people to be relying on a machine. They want the self-driving car, which has been hailed all around as an innovation for people with disabilities, to have an interface that will be accessible to the blind, and they want to prevent and combat laws that are already being passed requiring a licensed driver to operate a self-driving car—effectively excluding the blind from an opportunity to expand their own independence. Finally, to me, the NFB didn’t seem radical or militant. They seemed energetic and committed to always moving forward without settling for what we have.

 

At convention, I met so many amazing, intelligent people. I was mentored every day by members of the scholarship committee—writers, editors, lawyers alike. I attended meetings where I learned about exemptions in the fair labor act that allow people with disabilities to be paid substantially less than the minimum wage and the battles blind parents must fight for the right to raise their children as well as what the NFB is doing about it. I learned more about my rights as a blind student, and I screamed myself hoarse for Braille literacy, the Accessible Instructional Material in Higher Education Act (Aim High), the Marakesh Treaty to stop the worldwide book famine for the blind, and accessible fitness equipment. I learned how to navigate an unfamiliar area, like the airport or our hotel (which someone described as larger than the city of Pisa, and I’ve been to Pisa and I believe it), by asking for directions but staying independent rather than just by taking a sighted person’s arm and following them without a clue where they’re taking me. (Like I already said, there’s definitely times for sighted guide, but it’s nice to know how to do things without it.) And I took a ballroom dancing class and learned the basic steps for waltz and swing. I’m normally super self-conscious about dancing, because I can’t see what everyone else is doing and I’m afraid I’m doing it wrong. But here, no one could see what anyone was doing, so not only was our teacher—who was also blind—able to effectively describe the steps, but it really was the perfect time to dance like no one was watching.

 

The only thing I didn’t do was sleep and eat.

 

I also took a 1touch class,. 1touch is a self-defense program designed for the blind. I loved it, and I’m really interested in taking a longer, more intense class and maybe becoming an instructor myself, because I think it’s really important for the blind to be able to defend themselves. We might not want to be called vulnerable members of society, but as long as mainstream culture, and particularly predators, see us as vulnerable, we sort of have to face it that we are. In the class I took, we learned some basic ways to move away from someone who has grabbed you. I also now know how to break someone’s arm. I learned that if someone is simply being aggressively helpful (“Let me seize your arm and drag you across this street you clearly shouldn’t be crossing yourself!”), it’s better to twist free, step back, and tell them you’re all right and that they should ask first next time. On the other hand, if someone grabs you with the intention of hurting you, you want to grab them back and not let go because then you know where they are at all times and you’re in control. But all that aside, our instructor said something that really struck me, not just when applied to self-defense, but when applied to my everyday life: “Bravery is when there’s something more important than being afraid.”

 

I spent nine months in Italy absolutely terrified that I was going to be killed by a maniac with a motor vehicle, and since then, I have been unwilling to even stick a toe outside my comfort zone. It’s safe in my comfort zone. But it’s also incredibly freeing and empowering to walk through an airport independently, without sighted assistance, to find your gate and the bathroom and the food court on your own, to know where you are in the world rather than just feeling like a package that’s being delivered to who-knows-where. It was definitely outside my comfort zone—actually almost everything I did this week was outside my comfort zone—but once I did it, I found that my comfort zone grew to accommodate my new skills.

 

During his keynote address at the banquet Tuesday night, NFB president Mark Riccobono actually said that fear can be a good thing. Fear is powerful, he said, because it tells us that what we are doing is valuable. With everything wonderful comes fear. And we must use our fear to discover and push past our own limits.

 

So as I crossed the stage Tuesday night and received my scholarship award, I made a decision. Not a decision to be brave, which I’ve done before. Not a decision to push away my fears. But a decision to embrace them, to make something new of them, to turn them into strength.

 

Maybe I’ve been brainwashed, but I have decided that I want to join the NFB. (And just for the record, I don’t think I’ve been brainwashed, because there are some philosophies and methodologies I definitely disagree with, and that’s all right.) I want to be a part of this dynamic, energetic, strong organization and join their drive and commitment towards true equality for the blind, not only in the United States, but in the world. I want to dance like no one’s watching and not care if they are.

 

But first, I really, really need to get some sleep.