What Disability Rights Mean to Me

I’ve talked to a lot of people about this already, but for those who don’t know, I’ve decided to pursue a career in space law after law school. When I tell people this, I get two different reactions.

 

Either: That sounds so cool! … What is it?

 

Or: What happened to disability rights? You’d be so good at that.

 

Let’s set aside the first reaction for now. I’ll come back to what space law is in a future post—I promise. Today, I want to talk about that second reaction. What happened to disability rights? And the follow-up comments that I’d be so good at that and it’s really important.

 

In true Jameyanne’s blog fashion, let’s back up. Believe it or not, I started thinking about law school about three-and-a-half years ago. I’d been in Italy for about a month, and I was already pretty sure that I didn’t want to be a teacher. I was invited to a dinner at the local chapter of the Lions Club, because this chapter was involved in fundraising for a guide dog school in Milan, and they’d heard about the blind girl walking around Assisi with her guide dog and wanted to see her in real life. So I went to this dinner, and when I successfully  cut up my own chicken, everyone at the table applauded. I kid you not. They applauded.

 

I got back to my apartment at about two in the morning, exhausted and frustrated to the point of tears. It had been a long, difficult month, filled with countless incidents just like this. The people who screamed at me on the bus for having the nerve to leave my apartment by myself. The clerks who tried to stop me entering their stores. The head of the school for the blind who wouldn’t let me volunteer to help teach the students skills for independent daily living—like pouring liquid or getting toothpaste on the toothbrush without making a mess—because, and I quote, “they can’t do that.”

 

So here I am, at two in the morning, tired, homesick, definitely in culture shock, confused because I’m six months out of college and I don’t know what I’m doing with my life, and furious because I just want to cut up my chicken without people clapping. And I think to myself, you know, self, you could make a difference here, if you really want to. You could go to law school and become a disability rights lawyer and make a difference here, or back in America, or anywhere. You might wonder why law school was the first thing I came up with for a way to make a difference, but actually I’d been told by my parents and our family friend/my special education advocate, Eleanor, that I would make a great lawyer. And I’d actually been fighting against this idea for years. But here I was, seriously contemplating it.

 

Granted, I was seriously contemplating it at what was now 2:30 AM, so I took that contemplation with a large pinch of salt. But I couldn’t shake the idea, and the more I thought about it, the more I wanted to do it. So I spent the next year volunteering at the New Hampshire Disability Rights Center, which I loved, while I studied for the LSAT, took the LSAT, applied to law schools, got accepted to law schools, and decided where I wanted to go. And then I started law school.

 

Law school,  if you don’t know this already, is literally the worst. I have never worked so hard and felt so stupid. I’ve heard this from a lot of friends in grad school for other fields, so it may not be exclusively a law school thing. It took me less than two weeks to start questioning all my life choices and berating myself for letting my crazy 2:30 AM ideas get me into this mess. But I stuck with it, because everyone said there was a steep learning curve, and I’d only been doing this for two weeks. This was nothing like what I’d been doing at the DRC, but of course I had no legal training when I was there. What if the lawyers were spending all their time doing what I was doing in law school now? Could I do this for the rest of my life? So at some point, I asked my resident advisor if this was what it was like to be a lawyer. He said no, not really. Being a real lawyer was more like what we were doing in my legal research and writing course—applying cases and statutes to new problems—than what we were doing in my black letter law classes—reading a lot and analyzing a zillion cases that all said a zillion different things. This advice helped a lot, because I was enjoying my legal research and writing class better than anything else so far.

 

But I couldn’t shake the feeling that I wasn’t doing the right thing here. I just wasn’t totally happy with the idea of doing disability rights anymore. There were a lot of reasons for this.

 

First, I knew I didn’t want to litigate or work with individual clients. I was more interested in broader policy issues. I wanted to go into the federal government and make a bigger difference. But then the 2016 election happened. I don’t want to get political, but civil rights and the federal government became much less certain after that. Our teachers advised us not to give up on federal government work if that interested us, because the federal government was going to need good lawyers now more than ever. But the idea that, if you worked for the federal government, what you were defending or choosing not to defend, what policy you had to promote, could change so radically overnight, shook me. It seems obvious in retrospect, but it wasn’t obvious to me until I saw it happen. And I didn’t know what to do with it. If I didn’t want to work defending individual clients, and if I didn’t want to litigate, and if I wasn’t sure about working at the federal government, where did that leave me?

 

I spent most of second semester feeling like I had no clue what I was doing. I toyed with the idea of going into literary law and being some kind of literary agent/lawyer thing. And while that seemed like it would nicely tie everything I’d done up to this point together, I just couldn’t get really excited about it. When I got my internship at the U.S. Department of Education, Office for Civil Rights in Boston, I thought education law might be what I’m interested in. I was interested in education—why I’d decided to teach in Italy rather than research—and I’m passionate about all children getting an equal education. See any of my rants about Braille literacy and you’ll get the point. And the way the attorney who interviewed me described the Department of Ed, it seemed like a really good fit with my interests. But within the first few weeks at that internship, I knew that this, too wasn’t right. I wasn’t sure if education law was right for me or not—unfortunately I wasn’t doing much legal work because the office was so unclear about what it was supposed to be doing after the election—but I knew that in general this kind of federal enforcement office wasn’t for me. Basically, the Office for Civil Rights of the Department of Ed makes sure that any school receiving federal funds is following the federal antidiscrimination laws. So, if there’s alleged discrimination based on race, gender, sexuality, or disability, OCR does a review to make sure the school is complying with the federal laws. But, to give one example they used during orientation, if you have a really small rural school that’s receiving very little federal money, the school can just decide they don’t want the federal money and then they don’t have to comply with the federal laws. When I asked, “But where does that leave the student?” the attorney basically replied that, as sucky as it is, the Office for Civil Rights doesn’t have power to do anything about it if the school isn’t taking federal funds. And this really bothered me. I know I know, I’m a walking contradiction. I don’t want to litigate for individual clients, but when I’m working for the agency that’s making sure the law is upheld in a broader context, I’m upset by the idea that a hypothetical student could be discriminated against and there’s nothing we could do about it. And again, this left me… Where?

 

So that’s my first reason for being uncertain about doing disability rights. I just wasn’t  sure I wanted to do it. I wasn’t sure I’d be happy doing it.

 

My second reason is tied pretty closely to my first reason, and that’s that it just seemed like it would be exhausting, particularly in today’s political climate. It felt like everywhere I turned, I was hearing about activist burnout. And let’s be honest, I face disability discrimination pretty often myself, almost on a daily basis, even here in America. If someone on the subway isn’t insisting he’ll pray for god to fix me, someone else is shouting “Oh my god, she’s blind!” If I’m not being stopped from entering a restaurant and asked to prove that Neutron is a service dog—illegal, by the way—then someone is seizing my arm and attempting to drag me and Neutron across a street when I didn’t want to go that way thanks very much. I’ve had cashiers in the law school cafeteria question whether Neutron is a service dog, for crying out loud. I’ve had people refuse to let me get on elevators with them because they’re afraid of my dog. And then there are all those pesky new airline policies about service dogs (there’s another post about emotional support dogs coming, let me tell you). And this might be a standard week for me. I try to be polite about it all, but I’m only human, and it’s frustrating. I swear the next time someone asks if Neutron is a guide dog is going to get the response, “Yes, I’m blind. I can take out my fake eye to prove it if you insist.” The idea of working forty hours a week on this sort of thing, and then having to live it myself is pretty unappealing. Reason number three really didn’t help with this either.

 

Reason number three is that from the moment I started law school, anyone who met me, whether at the law school or not, assumed I was going to do disability rights. Conversations invariably went like this: “Oh, you’re going to law school? And you’re blind? So you’re going to do disability rights, right?” And this drove me nuts. Just so you know, I absolutely hate it when people assume things about me just because I’m blind. For example, in sixth grade a friend told me I couldn’t learn to make those gimp lanyard things everyone was making because it was more of a “sighted person thing.” I would stop at nothing to learn how to do it. That’s the kind of person I am. When someone assumes I can’t do something or I will do something or anything like that, I immediately want to prove them wrong and I do the opposite. So yes, I went to law school wanting to do disability rights. But between discovering that I wasn’t really sure about that (reasons one and two), and the constant assumptions that I’m blind so of course that’s what I’m going to do, I was really unhappy with the idea of doing disability rights.

 

I know what you’re thinking, because I thought it myself for a while. I shouldn’t make decisions because of what some people say. I shouldn’t let people’s assumptions derail my career. But like I said, I had plenty of other reasons why I didn’t want to do it. Above all, I didn’t think I would be happy doing disability rights, which is ultimately what made my decision. Yes, part of the reason I wouldn’t be happy is that I couldn’t stand the way people were always trying to pigeonhole me into disability rights because I was blind. But the problem remains, I wouldn’t be happy.

 

If you’re still not convinced, let me relate some of the conversations I’ve had with family and friends. Some people try to comfort themselves and/or convince me to reconsider by asking what kind of pro bono work I can do for disability rights om the side. Some people insist I’m making the  wrong decision, because I would be really good at disability rights, and when I try to explain to them that I’m not happy for all of the reasons I’ve just explained to you, they counter by saying they’re just looking out for what’s best for me. There are layers of problems with that statement that I’m not going to dissect for you. But I think the fact that I felt I had to write a whole blog post justifying my decision and that I’m really nervous about how people will take it says a lot.

 

Which brings me to the last reason I decided not to go into disability rights: I found something I really want to do. Not many people know this about me, but I am a huge astronomy nerd. Like huge. So when my property teacher mentioned space law, I started looking into it, and I was totally fascinated. I even applied for an internship at NASA for my first law school summer—I didn’t get it, but that didn’t dampen my interest in space law. So at the end of my summer internship with the Department of Ed, when other interns and I were sitting on the floor of the file room, talking about what we would do if we could do anything in the world, and I said “I would be a space lawyer and work at NASA,” and another intern said, “Jameyanne, you go to Harvard Law, if you want to do that, you can,” I realized she was right. It’s a really niche field, and I don’t have much of a science background, but I decided to go for it. And I have been a lot happier since. My parents have said that I just light up when I talk about space law in a way they haven’t seen in a while, and friends have told me it’s just great to see me make this decision and go for it. And fun fact, two days after I made this decision, I met my Neutron Star, which pretty much made it official.

 

This year, I’m splitting my summer and interning at the National Institute of Standards and Technology, a federal government laboratory in Maryland, and Analytical Space, a private space company in Boston that’s building a network of satellites that use lasers to communicate. I’ve been at NIST for three weeks, and I’m having a blast. And who knows? Maybe one day I’ll go back to school and get that science degree I wish I had.

 

All this isn’t to say that disability rights aren’t important. It isn’t to say that I don’t care about them—of course I care about them—I need them. And it’s not to say that I won’t keep fighting for them in any way that I can. It just isn’t the right career for me.

 

The way I see it, there are two ways to fight for disability rights. One is to be a disability rights attorney. this is really important. We need good disability rights attorneys who care about the issues. But to me, disability rights means more than standing up in court to fight for someone’s right to read Braille, or use a service dog, or have financial independence or the right to vote or the right to not be abused and neglected. Disability rights means standing up and living the life I want to live, pursuing the career I want to pursue, regardless of my disability. It means showing people that I can do whatever I set my mind to, even if I’m blind. There is a lot of value in seeing someone with a disability doing something totally unrelated to their disability. And really, this is the point of disability rights: to let people do whatever they want to, with their disabilities, just like everybody else. As a disabilities rights lawyer, I felt like I would always be defined by my disability, and true or not, I don’t want that. As a space lawyer, well, not even the sky is the limit.

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How I See It

Recently the Foundation Fighting Blindness launched its #HowEyeSeeIt campaign to raise awareness about blindness caused by degenerative retinal diseases and to push for a cure. As part of the campaign, people are participating in a blindfold challenge, where they post two minute videos of themselves trying to do daily tasks while blindfolded. One of the suggested tasks is having a friend give you an unknown amount of cash and then you try to pay for a meal with that cash. Another is having a friend ask you to take care of their child for two minutes while blindfolded. These and other activities in people’s videos are offensive.

 

I’ve talked a bit on Facebook about my problems with the campaign, but I felt like I needed more space to explain myself more fully and thoughtfully. So here is how I see it.

 

First, let me be clear. I have no problem with medical research, and no problem with a search for a cure. Personally, I wouldn’t want a cure, but I don’t have a degenerative retinal disease. I’m not going to pretend I know what it’s like to slowly lose my vision. I have some vision, but I have been blind since birth. Three years ago, when the retina in my right eye detached and my eye had to be removed, I lost some vision, and yes, if someone offered me that vision back, I would take it. But I wouldn’t take more than what I had before, because I don’t know what perfect vision is like, so I don’t miss it, and I don’t want it. Also there’s all sorts of brain science that shows that getting your vision back doesn’t mean you’ll be able to see, but I won’t go into that because I only vaguely understand how it works. Suffice it to say that if I had a choice between perfect vision and a million dollars, I’d take the million dollars every time. But that’s me, and I’m not representative of every blind person, and I’m certainly not representative of someone who lost their sight over time due to a degenerative retinal disease. So if they can conduct medical research and find a cure, that’s great.

 

But I find the FFO’s campaign to be deeply problematic. Two-minute videos of people struggling to perform daily tasks while blindfolded does not promote awareness of blindness. Instead it promotes fear and ignorance. If I had to perform some daily task with earplugs in, you bet I would have a hard time doing it, and you bet I would be afraid. But if I was losing my hearing, of course it would be scary, but I would learn, just as so many people who are losing their sight learn to live just as independently as they did before they lost their vision. Two minutes blind can in no way represent years of practice and training. It just can’t. It reduces the blind person to someone who must be pitied, cured, and worst of all, feared. It is a backwards, old-fashioned way of seeing the blind (and I use the word “seeing” deliberately). It is the idea that when you see someone who is blind, or someone with any disability, you are afraid, because you are afraid that could happen to you. It is the same sort of ignorance and fear that I encountered, not everywhere, but so often, when I lived in Italy. These attitudes about blindness can be changed, but what FFO is saying is that it is impossible to be blind and live independently—going blind is the worst thing that could happen to you—and the only solution is a cure.

 

Which brings me to my second issue with the #HowEyeSeeIt campaign. As I said, I have no problem with research for a cure. But there are other options, options that are hampered by the notion that being blind is to be feared. Braille, assistive technology, white canes or guide dogs, independent living skills training, positive public awareness campaigns, these are the ways we combat blindness.

 

Not being able to see is not the end of the world. Trust me, I know. There are strategies for handling money without sight—everything from folding bills to smart phone apps. And a blind parent is just as capable of taking care of a child as a sighted parent. In the midst of efforts to prevent social services from taking children away from blind parents, many times before the parents can even bring their child home from the hospital, this is particularly egregious. It is a result of ignorance, and it is this ignorance and this fear of blindness that FFO is promoting.

 

By living independently, we open the public’s eyes to what we can do and how we can do it. By being open to talking to people and answering their questions, we educate the public, and we break down barriers. If we let the public see us as incapable, as #HowEyeSeeIt does, we only reinforce stereotypes.

 

I have said it before, but I think it bears repeating here: I will answer any question you have. I won’t get offended. I am happy to do it, because every question I answer is one more step towards a society that accepts diversity and does not view blindness as a “disability.”

 

This is how I see it. I am a daughter, a sister, a friend, a student. I write. I play the clarinet. I am a huge nerd. This is who I am. I am blind, yes. But blindness does not define me. Blindness does not stop me. And this is the message that needs to be shared.

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.

What I Learned at the Disabilities Rights Center

Last October, after I took the LSAT, I started volunteering at the New Hampshire Disabilities Rights Center. I wrote about this a bit before Christmas, but now I’ve worked there for six months, and yesterday was my last day. I’m about to embark on the epic road trip of visiting law schools, and after that, my landlady and landlord from Italy are coming to visit, but I was very sad to be leaving.

 

I’ve had plenty of experiences where I’ve learned so much in a short time—not just in terms of knowledge but also in terms of myself—and these six months were no exception. I learned a ton, so much, it’s difficult to quantify.

 

I performed research—of the legal sort as well as your garden variety google searches. I learned how to find and read federal and state laws. I learned all sorts of new words, like “pursuant” and “furtherance.” And I researched and wrote a brochure on service animals and the Air Carrier Access Act as well as an article on the rights of students with traumatic brain injuries.

 

After Christmas, I worked with the Help America Vote Act team. We worked on publicizing the new accessible voting machines. We also wrote a pamphlet on creating an accessible campaign—through events, website design, and mailings—and contacted all the campaigns, planned monitoring visits of polling places all over the state to get feedback on the new machines and to check on basic accessibility requirements, and coordinated with the national organization RespectAbility to get people with disabilities to campaign events and to get disabilities rights issues on the table. I even got to do all investigation—by which I mean call a bunch of town clerks, ask them about absentee ballots that weren’t counted because of mismatched signatures, and hope they were honest with me. It was all super fun.

 

I also got to observe several stages of a case concerning denied eligibility of services, from its preparation and filed motions to the pre-hearing conference and the hearing itself. I worked on several stages of a different case myself, drafting Right to Know letters—the New Hampshire state equivalent of a FOIA request—and then I read, organized, and cataloged all the evidence we received from those requests—the discovery part of the case.

 

I did research for our policy director that he used in meetings with the state legislature. I reviewed specific facility policies and compared them to state laws regarding seclusion and restraint practices, and then I drafted a letter highlighting the areas where the facility was out-of-compliance. Finally, I learned about the immensely complicated and scary process of legislative history. (It became much less scary once I found my way to the state library where a lovely librarian found everything for me.) Basically, I went back into the history of a 1947 state law and read the original bills and the notes in the House and Senate journals for the original law and then several relevant amendments, all of this in order to determine the law’s intent. Legislative history is something, I’m told, that most law students don’t do until their second or third year.

 

So yeah, I did a ton, and I learned, and I’ll probably be starting law school in the fall with a bit of a head start. But my experience at the DRC gave me more than that. I had so much fun going to work every day, because every day I was working on something different and learning something new. I loved having lunch with all the attorneys and hearing about what they were working on and how they planned to approach it. And I will be forever grateful for all the support and advice they gave me as I went through the application process for law school, received all my acceptances, and began working my way towards a decision (a decision I still haven’t made yet, hence the epic road trip of visiting law schools I’ll be starting next week).

 

But it’s even more than that. I’ve said it before, and I’m sure I’ll say it again many more times, but a year ago, I was absolutely miserable—the rejections for the MFA programs I’d applied to were piling up, I’d decided I didn’t want to get a masters in comparative literature after all, I was not really enjoying teaching, and on the whole I didn’t know what I wanted to do with my life. Somehow, I clawed my way out of that mess of disappointment and uncertainty, and I took all the experiences I’d had and decided I wanted to go to law school. I put all my energy into studying for the LSAT and applying for law school. But at the same time, in just the last few months, everything I thought I wanted to do with my life had been turned on its ear, and right then I wasn’t sure I could trust that my decision to go to law school was really right for me. What if I hated it? What if I discovered something else I liked more? What if I was just unhappy right here and right now but I was still giving up on all my dreams? But after just a week at the DRC, I was confident, and that confidence has only grown over the last six months. Now, I am absolutely sure I am on a path to a career that matters to me and that I will enjoy every minute of. Now, I just have to pick a law school.

I Read Too

I talk a lot about Braille literacy. Many of you have probably heard this before—multiple times—and I’m sorry for repeating myself, but I’m going to anyway. Actually, I’m not sorry at all, because it just keeps coming up. This is the area of disability rights that I am most passionate about (at least right now), and for obvious reasons: I love to read. Books have always been my best friends.

 

So like any bookworm, I measure time by when books I want to read are coming out. In the last two weeks, two books I’m excited about have been released: The Girl Who Raced Fairyland All the Way Home by Catherynne Valente and Lady Midnight by Cassandra Clare. Just today, I found out about another book I want to read that was released today—Seven Ways We Lie by Riley Redgate (a current Kenyon student). Later this month, the third Colours of Madeleine book—A Tangle of Gold by Jaclyn Moriarty—will be coming out. But I don’t know when I’m going to be able to actually read these books. Not because I’m super busy (I always make time for books), but because they aren’t available in Braille yet. They will be, I’m sure, but I have no idea when.

 

This has been an issue my whole life. I had every single Harry Potter book spoiled for me except the last one, because the publishers gave an advance copy to the National Braille Press so they could translate it into Braille and ship the books to arrive on the release day. And that was a big deal. It shouldn’t be a big deal anymore. Technology has advanced so much since 2007, what with the proliferation of eBooks and Braille displays alike. It should just be the press of a few buttons to take a digital file of a book and translate it into electronic Braille. So why isn’t it happening like that?

 

The answer is that it’s probably a matter of some complicated subsidiary right that hardly anyone thinks about because the blind population is so small and the Braille reading population is even smaller. Which brings me to Braille literacy. Now, I enjoy a good audiobook as much as the next person, but I prefer to read in Braille. And the idea that the Braille-reading population is so small they don’t warrant the same attention as the general populace only perpetuates the problem.

 

The idea behind disability rights is inclusion in society at large, but because we can’t read a book at the same time as our peers, we are excluded. At best, we end up playing catch-up to our friends who have already read and discussed the book. But more often than not, especially with the internet and the way it tends to go crazy when long-anticipated books are suddenly available, major plot points of the book are spoiled for us, which could ruin our enjoyment of the book.

 

Yes, I’m blind, but I read too. And the problem of Braille literacy extends beyond fiction to education and employment issues as well.

 

Here’s the deal: only 10% of the blind read Braille—it’s true. It’s also true that hardcopy Braille is expensive and huge, and Braille displays and notetakers are expensive too (though considerably less huge). But none of this means Braille should be abandoned. Braille is the only viable way for blind people to read. A literacy rate of 10% is not evidence that Braille is impractical; it is evidence that 90% of the blind population is illiterate. Studies have shown that blind children who just use audio in school instead of learning to read do not develop the critical reading and thinking skills necessary for success in school and society. Denying blind children their right to be taught because it is inconvenient or expensive—as so many are—is a violation of their civil and human rights. All children who can see learn to read. It should be the same for children who are blind.

 

To give one analogy, the literacy rate of the blind in America is less than the total literacy rate in some of the least educated countries of the world, and it would be unacceptable to say the people of Afghanistan or Mali or Niger or South Sudan are illiterate because it is too expensive or inconvenient to teach them.

 

I love to read, but I am passionate about Braille literacy for reasons beyond my desire to be able to have a book in my hands the day it comes out (like everybody else, I might add). My parents had to fight for my right to learn Braille in elementary school, but many parents don’t have the knowledge or means to do that. When the school district insists that students who are blind don’t need Braille, how can they argue? But there is no substitute for reading when it comes to fostering independence.

 

Braille literacy is an issue all over the world. Programs like Perkins International send teachers and equipment to developing countries to teach Braille, believing that reading is fundamental to education, and education is fundamental to success. Yet Braille literacy is still a huge problem, even in the United States. Almost 70% of the adult blind population is unemployed, and this can be traced back to inappropriate or absent services in school, including lack of training in Braille.

 

On my first day at the New Hampshire Disability Rights Center, one of the attorneys told me about a decision involving a child who was not being taught Braille. The judge gave the decision to the school district in Braille and told them to read it without accommodations. This is the kind of thinking and action that makes a difference. It’s also just plain awesome! But there still needs to be a shift in the overall discussion towards how Braille can be extended to those who need it so the blind can have the same advantages as the sighted and reach their full potential as contributing members of society.

 

I Am Diverse

My coworkers at the Disability Rights Center asked me to share the essay I wrote for my diversity statement for my law school, and since then I’ve been thinking a lot about diversity. It’s a term that’s being thrown around a lot these days and with good reason. But while I hear a lot of “we need to be more diverse”—whether it’s in education or employment or the arts—I don’t hear a lot of why.

 

What I liked about the chance to write a diversity statement was that it captured the point of diversity, the essence of its value to society. It didn’t just ask if I belong to a marginalized group. It asked how belonging to a marginalized group affected my experiences and perspectives. That, to me, is what diversity is all about. It isn’t just a number or a label. I am a person who is blind, yes, but that doesn’t in itself make me diverse. Because I am blind, I have experienced my whole life differently even than someone with sight who did the exact same things I did. It is these different experiences and challenges that I have had to overcome that give me a unique perspective to add to any conversation. That, to me, is why diversity is important: it aims to add all voices to a conversation, thus enriching that conversation with the fullness of the human experience.

 

To that end, I wrote my own diversity statement about my experiences in my high school marching band: my feelings of exclusion, my struggle for reasonable accommodations, and finally success not only for myself, but also for the band and the community at large.

 

So without further ado, here it is:

 

Playing my clarinet in the school band was the first time I felt fully included in an activity with my sighted peers. But when I entered high school, the band started formation marching in the halftime shows at the football games, and our band director simply could not see a way for me to participate. I was forced to stand and play on the sidelines, conspicuously out-of-place as the rest of the band marched behind me. I no longer felt like I fit in. In fact, I felt like I stuck out like a sore thumb, standing by myself and playing my part isolated from my section. By the end of my sophomore year, I had had enough. I did some research about other blind people in marching bands, formulated a plan, and presented it to the music department. They said I could try it if I found someone to help me.

 

So I approached my best friend, Amy, and asked if she would guide me for the halftime shows. She agreed, and after a lot of tripping over each other’s feet and several collisions with the sousaphone section, we learned to move across that football field as if we were one person. Amy stood behind me and kept her hands on my shoulders. She was like my shadow, guiding me to each exact position on the field as I played, but we moved together: Backwards march. On beat five, start playing “Eleanor Rigby”. Float sixteen. Hold twelve and dance. I was part of the band again.

 

The local news came to the championship to film the marching band with the “blind girl,” and when they said, “Where’s the blind girl?” we knew we’d done it. Amy and I changed the marching band together. And the marching band, Amy, and I changed the community and its perceptions.

 

During the summer, I joined a team of blind and sighted teenagers, and we hiked in the Andes in Peru and whitewater rafted the Colorado River in the Grand Canyon with Erik Weihenmayer, the first blind person to climb Everest. Erik told us that when we work together, we all learn from each other, and at every step on those trips, we did. The blind members of our team were able to tackle and surmount an extraordinary physical challenge. At the same time, the sighted teens saw us climb those mountains and succeed. As we realized we could participate in sighted society, they realized they wanted us to participate—we were in fact great people just as capable and normal as they were, even if we had to approach challenges in different ways. Capable and successful people with disabilities break down barriers, change perceptions, and enhance communities.

 

And so it was with the marching band. I was not only able to march, but I showed the band, the school, and the community I could, and by extension, anyone can, given the opportunity. With our will and courage and music in our ears, Amy and I “stepped off,” together, “me and my shadow”.

 

Voting for Independence

Spend time in any foreign country, and you come back with a profound appreciation for America. Personally, after a year in Italy, I will never look at wireless internet or consistent hot water or dryers the same way. I have a friend in Japan right now, and from what I’ve heard, he really misses central heating. One thing I did not expect, when I went to Europe, was how much I would learn to appreciate voting. I am still thoroughly confused by how the Italian political system works, but based on conversations with my students and friends, Italians don’t vote for the specific candidates. They vote for the party, and there are a lot of parties. I taught a few lessons on American elections, and my students were always amazed and envious of the power Americans have in government. But one thing I was always sure to tell my students is that not everyone has the same power. I, as a person with a disability, have never been able to exercise my right to vote independently and privately before.

 

Almost from the moment our country was founded, America has expanded and then expanded again the electorate, creating laws that gave one disenfranchised group after another the right to vote: first the poor, then African Americans and other racial minorities and women. In 2002, Congress passed the Help America Vote Act, which guarantees the right to vote accessibly, privately, and independently to all people with disabilities. In 2009, I turned eighteen and registered to vote, and I have never been able to vote like everybody else. Twice, using an absentee ballot at school, I had to rely on friends to fill in my ballot for me. I trusted them, but at the same time, I couldn’t see who they were really voting for. The absentee ballots were far from accessible, far from independent, and far from private. When I signed the envelope afterwords, and I had to choose the reason why I was using an absentee ballot, I accidentally signed over the part that said “Because I am blind and require assistance.” The one time I voted in person, during the 2012 New Hampshire primary, when I arrived at my polling place and asked how I could vote independently, I was greeted with blank stares. I had to have assistance in the voting booth, and when I left, and the people conducting the exit polls asked who I’d voted for, I responded “I honestly don’t know.” (Because I’m that person.) Just two weeks ago, I learned that there was an accessible voting system available at the time, something called a phone/fax system. I’ve heard a lot of horror stories about it, but I never got to try it. I didn’t even know it existed.

 

But this year is going to be different. At the Disability Rights Center, I’ve been working with the voting accessibility team for the last several weeks on ways to make this election as accessible as possible and ways to promote that accessibility to the public. New Hampshire has just rolled out a new, accessible voting machine. It uses a tablet, a set of headphones, a keyboard, and a printer. An automated voice will read the choices to me, and when I hear the candidate I want to vote for, I press enter, and it prints out my ballot. It’s all been very exciting. It’s the first project I’ve worked on at the DRC that I’m seeing to fruition.

 

This morning, I went to the New Hampshire Association for the Blind and tried out one of the machines before the primary, and it definitely has some issues that need to be worked out. First of all, I have never heard a speech synthesizer so awful. I understand the state is working with free, open-source software, but when the speech is not lined up in each ear of the headpiece (so it sounds like it’s echoing itself) and when candidates names are pronounced so badly I’m not sure who they are, we have a problem. I’ve worked with all sorts of speech synthesizers all my life, and some mispronunciation is to be expected. I accept that. No computer can pronounce my name correctly if I don’t add it to the pronunciation dictionary, after all, so it only seems fair. But some of these mispronunciations made no sense. How we get “Burn Sanders” from Bernie Sanders and “Carl Fiorine” from Carly Fiorina (to give just two examples) is beyond me.

 

Another issue is that it is possible to vote for two candidates by accident, especially if you’re rushing. And after listening to almost 30 terribly mispronounced names, who wouldn’t want to rush? (Get this voice out of my head! Seriously, it’s like nails on a chalkboard! Make it stop!) But if you do accidentally pick two candidates, and you also happen to be blind, how are you going to know once your ballot gets printed? You’re not, and your vote won’t be counted. Which brings me to the ballots themselves, which are printed on regular printer paper rather than the cardboard used for everyone else’s ballots. Ballots from the accessible machine are easily distinguishable from other ballots, and they have to be counted by hand rather than the automatic ballot counter. If one voter uses the accessible voting machine, the election moderator is also supposed to use the accessible voting machine when they vote to create privacy for the person who used the machine, so it’s not too bad, but it’s still different. Finally, this machine is designed to be accessible to all people with disabilities. It includes a way of voting with voice rather than with the keyboard or touch screen, but due to some technical issues with the microphone being too sensitive, that isn’t working yet.

 

There’s a lot to work on with these machines, obviously, but I want to stress how great this really is. No, it’s not perfect, but it’s a huge stride forward for New Hampshire voters with disabilities. For me, if everything goes according to plan, tomorrow will be the first time I am able to vote as if I were sighted. And there’s a lot of potential for this technology, once all the bugs are worked out.

 

A few weeks ago, a friend linked me to a cartoon (and then described it to me because there was no alt text). In the cartoon, a group of kids are waiting in front of a school while a man shovels snow off the stairs up to the entrance. Among the waiting students is a girl in a wheelchair. She asks the man if he will shovel the ramp. The man says he will, as soon as he finishes with the stairs so the other students can go inside. He tells the girl in the wheelchair to be patient, but the girl says, “You know, if you shovel the ramp, then we can all go inside.”

 

This struck me as so simple and so poignant, yet at the same time so obvious that most people would overlook it as a solution. People with disabilities don’t want “separate but equal.” We want inclusion. This is the eventuality I hope for for this new voting machine. There shouldn’t be two systems—one for the able-bodied and one for the disabled. There should be one system that will work for everyone. That is obviously the intent behind this new technology: the system is called “one4all,” after all, and anyone can vote using the tablet.

 

So I’ll take the glitches, with the promise that things will be improved. Of course, if things aren’t improved, I will get cranky. But tomorrow, I’m going to vote!

 

Now I just need to figure out who to vote for.