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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“Polaris in the Dark” to be Published in the 2018 Young Explorer’s Adventure Guide

I’ve been sitting on this for about a month now, because there wasn’t a contract and I didn’t want to jinx it. But it’s really happening, so I am super excited to tell you all that my short story “Polaris in the Dark” will be published in the 2018 Young Explorer’s Adventure Guide anthology! It’s an anthology of science fiction stories about diverse characters aimed at middle grade readers. My story is about a blind girl indentured on the train that runs around the rings of Saturn… until she escapes. This isn’t the first story I’ve written about a blind character, but it is my first ever science fiction story, which is really cool. I had a lot of fun inventing gadgets that I actually want in the real world. Also it’s my first professional sale, so yay! If you’re interested, you can vote for the cover of the anthology here. I’ll keep you all posted as the anthology develops.

A Person Who Happens to Be Blind

I have been living in Italy for a little more than five months now. I am blind. And at this point, I’m going to ignore the State Department blogging guidelines with impunity because i need to say this.

 

Cue deep high-speed radio voiceover: this is not an official Department of State website and the views and opinions expressed herein are my own and do not represent the Fulbright Program or the Department of State.

 

So: Italy is a terrible country to live in if you’re blind.

 

Okay, I’m sure it’s not the worst in the world by any means, but compared to the United States, compared to what I am used to and what I expected when I left college, it’s been pretty rough.

 

At this point, I need to back up to give a bit more context.

 

I was born with aniridia glaucoma. By the time I was one year old, I’d had twelve eye operations, and then two more when I was five. I had some vision in both eyes—light and shadows and color, but not enough to read print or navigate without a white cane or guide dog. For all intents and purposes, I was blind, and last year, I became blinder when the pressure skyrocketed and my retina detached in my right eye. The pain was so unbearable I had to have it removed. It was horrifying to open my eye onto complete blackness—even more horrifying when my brain started trying to compensate for the black, sometimes filling it with what it knew to be there, sometimes presenting me with thoroughly distracting swirls of light and color. But once I got used to it, my life didn’t change all that much. Yes, I am suddenly more left-handed than right when it comes to things I use my vision for, and yes, I like to sit in the middle or on the right of gatherings watching television so the black doesn’t get in the way, and yes, the Jameyanne the One-Eyed jokes are always fabulous. But my vision had been deteriorating in that eye in the weeks before it was removed, so by the time I had the surgery, most of what I was losing was the pain. And who needs that anyway?

 

But this is the sort of attitude I have had all my life. Yes, I’m blind. Big deal. It’s not going to stop me from biking or drawing or playing clarinet or swimming or going to school or teaching in Italy or whatever it is I want to do. And woe to you if you tell me I can’t or try to stop me.

 

It’s something I was taught when I was very young, something most blind children are taught. I am not a blind girl or a blind student or a blind friend or a blind teacher or a blind writer or a blind person. I am just a girl, a student, a friend, a teacher, a writer, a person, who happens to be blind.

 

All my life, I have resisted being labeled as “blind”. Because “blind,” when applied as a label like that, usually means “can’t.” And “can’t” is not part of my vocabulary.

 

All my life, I have learned the skills I need to be independent, and when I went to college, I felt as if I had achieved that. I had teachers who asked what they could do to help me before I told them what I needed, teachers who saw me as they would see any other student. I had friends who told me where we were sitting in the dining hall before I asked—even developed a system of banging on the table so I could find them—friends who sometimes argued over who would get to describe a movie or television show to me, friends who never questioned me when I said I was going to play Humans Versus Zombies with them or participate in the Kenyon Hunger Games (I rocked at both, by the way). The fact that I was blind barely ever came up. Best of all, I didn’t feel blind, not even during those months where my eye was exploding and I turned the lights off instead of on when I entered rooms. Okay, maybe a little bit then, but not for the same reasons.

 

And then I came to Italy last October, and all my dreams and ideas of what it meant to live independently and what I thought I could do were given a thorough pounding. I met, for the first time in my life and from almost all sides, the attitude that because I was blind, I couldn’t, shouldn’t, had no business, even, living so far from home by myself, working, taking the bus, walking to the grocery store. There’s a cultural attitude here that if you’re blind, or have any disability really, you stay at home and let your family take care of you. My volunteer project—to help teach children at the school for the blind in Assisi some basic independent living skills, like pouring water without spilling or tying your own shoes or putting toothpaste on the toothbrush without making a mess—was shot down almost immediately by the director of the school, because, and I quote, “They can’t do that.” My backup plan to work with blind kids at local elementary schools also failed because apparently there are no blind children at local public elementary schools. Even my most basic goals , like going to the store independently or cooking by myself, didn’t work out as I had planned. Since traffic laws are only suggestions here, and therefore sidewalks are synonymous with parking lots or sometimes even highways, there’s no safe way for me to walk to a supermarket, even though there are several within walking distance of my apartment. And since I need to use a lighter to light my stove, and let’s face it, I have terrible aim, I can’t cook by myself either. So, for the first time in a very long time, I felt blind.

 

This was very difficult for me. It was like my neighbors’ attitude was seeping under my skin, to my very bones, making me feel like somehow I had failed. It took a long time for me to realize that even though I’m not as independent as I would have liked, I’m still more independent than I have been my whole life. I’ve taken one more step towards independence after college, not the giant leap that I envisioned myself taking, but still a step. And I’ve done more than that.

 

Somewhere between eliciting a round of applause for cutting up my own chicken at a dinner for the International Lions Club and being denied access to the tower of Pisa, I realized that I am representing blind people to Italians who may not have any direct experience with someone who is blind. I have been showing them that a person who is blind can do things on their own. And I’ve noticed a difference in the reactions I get around town. People say hello to me as I pass in the street. They ask me how I do things. Sometimes, they even admit that they didn’t think someone with a disability could do any of the things I’ve done, but I’ve changed their minds.

 

It’s only been in the last couple months that I’ve noticed this change, and when I noticed it, I realized something else. Ever since I left high school, I have resisted being “blind.” I didn’t even know I was doing it, because I was so happy, but to give an example, if someone suggested I write about being blind, I resisted. I said it was because I wrote fiction, not nonfiction, but I didn’t even want to write about a fictional blind character. I didn’t want to be defined as “that girl who writes about blind people because she’s blind.” And this extended to everything else I did and said and thought.

 

But I am blind. It doesn’t have to define me—in fact, I’ve made it fairly clear that it doesn’t—but I can’t change it either, and I wouldn’t want to if I could. And who better to represent people who are blind, whether in literature or in real life, than a person who is blind herself? Who better to represent me than me?