Activist?

I had the pleasure of speaking at a forum about disability issues on campus at Smith College last spring. The event was born out of some discontent I was feeling about the scarcity of disability related discourse on campus. It seemed that when disability was discussed it was always in an academic context, and often it was without regard for the difficulties that affected everyday life for disabled students. In any case, at this forum I was asked a particularly salient question that has stuck with me ever since. I wish I could remember what the exact wording was, but it was something to the effect of is it your intention to be an activist? How do you feel about constantly having to be the one to bring up these (disability related) issues? Isn't there ever a time when you just don't want to talk about it? The answer to that last part is yes. I realized something about sitting at this forum, surrounded by this proud disabled students with there references to disability history and justifiable indignation about the inaccessible dining hall or the busyness that sometimes mutated into apathy about important issues. I am not a hell raiser. I am all to happy to facilitate dialogue, but I am without the fire in my belly, nails for breakfast attitude that must compel people to go to protests, or pick up that phone. The thing to understand, though, is that it's not like I don't care. I care deeply. I am just fundamentally more reserved and more skeptical of extreme views than I feel like I should be sometimes. It is fundamentally difficult for me to conceive of disability as a civil rights issue, because I am much more likely to assume that the reason a given place is not accessible because perhaps the small business lacked the funds or the support structure to implement needed changes. I am not endorsing this point of view, I am merely saying that it is the one that I default to. I have never been particularly inclined to sue anyone. Before two weeks ago, I'd never heard of Ed Roberts.

There is another component to this, though. Maybe I am hesitant to advocate on my own behalf because I have rarely had to. Maybe I disagree with assertions that abled-bodied people don't care about disability related issues because so many such people have been so good to me. All of this often makes me feel like something of a bad disabled person. I still haven't quite decided if this post is intended to be self-depricating or self-congratulatory, but once again it's complicated.

Both

So, in a way I am supremely unfit to be a blogger because every couple of weeks I just stop. I don't know why the idea that people read what I write is so scary to me. The thing that drove me back to the blogosphere is this article I found on the NY Times blog Motherlode. http://parenting.blogs.nytimes.com/2011/08/01/kindergarten-with-cerebral-palsy/. In it a father writes about sending his son, a three year old with CP to Pre-K for the first time. Overall, I thought it was really beautifully written and gave a certain nuanced view of life with a disabled family member that was really interesting to me. There was one line that gave me pause, though. I'm not sure if I disagree with the sentiment being expressed. It just made me think. He said that a lot of the time his son was so" charismatic and funny that people often forgot he was disabled. "Before I go further I should say that this all sounds quite familiar to me. I can remember saying to my parents as an elementary school student that if people were simply to hear me talk, without seeing my legs they might not know I was disabled. I think this was both an aspiration and a source of pride. So I understand the sentiment being expressed in the piece. That said, I am no longer certain if hoping that people forget about my disability is a healthy way to live. In truth, the people that I am close to need to be fully aware of my disability in order to give me the help and support and friendship that I need. At this point in my life, I really feel like the impact that my Cerebral Palsy has had on my life has been profound. For as long as that is the case, helping people to forget about it by being especially awesome is not a worthy or sustainable goal. Furthermore, I take issue with the notion that positive qualities and disability cannot exist side by side in one person. I cannot even say how many times someone has said to me. Disabled is not who you are, you are so accomplished, or so articulate etc. My response, typically it's in my head because I don't want to rebuff the kind intention, is that on a good day I am both. It is my sincere hope that I will come to find that far from being mutually exclusive the two qualities play off each other. I hope that the disability that I have makes me more eager to express myself clearly, to be a strong and effective advocate to find humor. I hope that those positive qualities will help me to maintain a workable and nuanced relationship with the ongoing, and very real, disability. If I could talk to this three year old, assuming he was old enough to understand me, I would say the following: appreciate nuance in the way you view your disability. There is legitimate difficulty and sadness ahead, but assume that the unique way that you are experiencing the world has something to offer you and don't disown disability as a component of identity entirely. If you get confused, look to your family and friends. If your feelings change tomorrow your doing it right. Some of this is cliché, but, hey the kid is three!

It so happened that my discovery of the previously mentioned article coincided with my discovery of several notebooks recording communications between my parents and my preschool and kindergarten teachers and therapists. They showed, remarkably, that I was a pretty happy kid even though I was very aware of my disability and some of it's ramifications. It's also clear that, like the family in the article, my family and supporters were going through a daily process of trying to make things work. I still have a really complicated relationship with my impediment, but I wish for the three year old in the story much of the same happiness and help that I've had. Sounds like he's off to a good start.

They have a way with words.....

I have a somewhat ummm appropriate excuse for being out of commission the last couple of days. A couple of months ago I read a NYT article about a website called lawprose.org which conducted interviews with 8 of the 9 Supreme Court Justices about writing well. David Souter, then sitting, refused to participate insisting that his writing was nothing special. I don't know about that. Anyway, being me, I immediately googled the website only to find that I did not have the proper plug-in to view them. Tears. A couple of days ago, though, my more tech-savy sibling managed to find the right app and install it, leaving me to my 9 hour long SCOTUS fix. And they are certainly amazing. I've heard that Justice Scalia is a fantastic writer so I decided to listen to him, and it was worth it in a certain way. I've literally been feeding myself little segments. Like chocolate. Lili Get A Life, you say? Inconceivable. In other SCOTUS news, I'm fully aware that the Court has made several really consequential decisions in the past about Miranda, gender bias, and representation in civil cases involving incarceration. I will wait to comment on those until I have finished going through the opinions and listening to the oral arguments.

In other news, I took some time off from my legal mania to attend a hip-hop show with my parents at the SoHo Playhouse. Read that sentence again, how many incongruous things can you find. Normally, hip-hop would be quite the departure for me, but this one was also a lecture about evolution with Canadian Rapper Baba Brinkman. Now, maybe the constant reruns of Schoolhouse Rock during 3rd Grade traumatized me, but I went into this really skeptical. To my surprise, I found it really engaging. It was intellectually rich and musically jaunty. Also, importantly, all the science-y people I met there were saying that the actual evolution information was impressively accurate. I would highly recommend it to anyone in NY.

In other, more personal news, it seems that the stammer that I so detest has experienced a little resurgence since I've been home in Ardsley. After it was so fluent at Smith, I was hopeful it might be gone for good. Oh well, I guess I'll have to pull out the old BREATHE and STRETCH technique :(

Yes, Yes, Yes!

There is a lot I could say about this post. About how much I think this captures about the problems with public perception of disability. I can't say more than this blogger already did, though. Therefore, I'm just going to share it with you with thanks to Ira Socol for introducing me to this blog!

http://blobolobolob.blogspot.com/2007/03/tragedy-model-of-disability.html

Smithdrawal

First of all, props to the lovely and talented Nica Siegel for this beautiful new layout. So legitimate. I am missing Smith hugely right now. I'll bet it looks gorgeous in this weather. I spent a while last night skyping with a friend and hopefully I'll skype with another one tonight. Also, I am shamelessly stealing the title of this post from my friend Jesse who is currently in Texas doing teach for America. Several people I know are doing that program after having graduated from Smith. I will be curious to see what their experiences are like. Another recent graduate is going to Russia, almost Siberia, on a Fullbright fellowship. I hope I the chance for some similarly exciting experiences before long. What is that tune about "slow down you crazy child...?" Yep, that's me. It's easy to have goals while at school, but being home has left me slightly at loose ends in a way that doesn't sit well with me. Not that I'm not enjoying HUMAN+ because I am, but I think I'm law deprived. A friend made the foolish mistakes of bringing up Marbury v. Madison around me, and I went on a lengthy tirade about writs of mandamus.

One of the things I'm supposed to be researching is social and historical context that might have an impact on assistive technology. For example, I searched Individuals with Disabilities Education Act (IDEA), which was a recently passed law intended to require access to an appropriate education for disabled students, next to the term "assistive technology," to see if I could find anything about how assistive technology impacted this type of educational reform or vice versa. So that is essentially what I am working on now

Oh that Lili, She Talks Like a Lawyer!

First a clarification. The aforementioned profoundly touching prosthetic leg is called the Jaipur foot, not the Janipur foot as previously mentioned.

More info about it can be found here http://www.jaipurfoot.org/. Definitely worth a look.

In other news, a friend said something earlier today which, while not a criticism, offered me an interesting opportunity for reflection. In an earlier blog post, I had said that I rarely disagree with the Supreme Court. He looked at me incredulously. Haven't you disagreed with like every 5-4 decision the Court has made in the last year? He has a point. The exception to this would be the Court's recent decision in Brown v Plata upholding an injunction compelling the state of California to release thousands of prisoners in order to remedy long standing constitutional violations which occurred as a result of overcrowding. But I digress. Although I was with them on that specific issue, there have certainly been decisions that have made me uncomfortable. And yet, I absolutely revere the Supreme Court in a really idealistic way. When they talk, I listen. If I am on the fence about a given issue, the fact that 9 Justices, THE 9 Justices expressed an opinion means something to me and, where possible, I give deference to their judgments. I guess that is what I meant when I said that I rarely criticize the court. Even when I dislike their conclusions, I respect the institution

I really pride myself on looking at both sides of an issue as much as possible. I like to challenge my own assumptions even the ones that go really deep. I understand that this process is not beyond criticism. There is something to be said for being a fiery and unyielding advocate for one's own values, but there is also something to be said for being measured and rigorous in analyzing a difficult situation. On the other hand, I fully acknowledge that I cross the line into being a bit law centric sometimes. For example, if the question is "Lili, what do you think?" the answer is not, or should not be, "Well, the court ruled x." Also, I have noticed that my several years in Mock Trial have left me using expressions like per se in absolute excess. And I would "respectfully submit" that this is bad in social situations :) . I can, and will talk about things other than law. Tomorrow!

Why I love Rainy Days

I am notoriously bad at raincoats. I never, ever have one when it is raining. I am similarly bad at rain boots. After one heartbreaking four and a half hour stint failing to remove them, I abandoned them completely. Don't even get me started on umbrellas. Sufficed to say that walker + umbrella= fail. I perpetually freaked out a certain lovable first year seminar professor by showing up at class drenched and, in characteristic style, laughing it off as no big deal. Of course it wasn't no big deal, it was actually quite humiliating. It would be really, really nice to be able to get myself to class in one piece. But I have come to love rainy days at Smith because without fail when it is raining, someone slows down and holds an umbrella for me. It sounds trivial, but I have never been in a place where the commitment to holding me upright is so absolute. Even more than that, I have never been made to feel ashamed about my inability to hold an umbrella, or the fact that I needed that help. So much decency from strangers. Thank you all!

Going Public

One of the reasons that I stopped blogging for those several months is because the idea of anyone reading my writing made me squirm. On the other hand, the main reason I started blogging was because, operating on the assumption that their aren't a huge number of disabled ConLaw nerds around, I hoped I might have something meaningful to share by way of life experience. To the extent that there are other disabled law nerds easily accessible, I hoped to track them down. It's not so much that I believed I more legal knowledge than anyone else, but I hope that what I lack in understanding I make up for with exuberance. With the general sense of being someone on a mission to pursue what makes me happy in spite of, or maybe because of, substantial obstacles. Taking things down a notch, I hoped to have a place to meaningfully reflect on the beginning of my time at Smith. And it has been a wonderful year! I have so many amazing friends at Smith, and my intellectual life is richer there than it ever has been her. Although I haven't blogged as much I hoped to, that which I've done, I've enjoyed.

And yet, so few people know about this blog. I've withheld it from all but a couple of family members and friends. From my professors. Counterintuitively, from my beloved Mock Trial team and coaches. I think the need to impress chocked me a bit. But tonight, I will post this link to facebook, and anyone who wants it can have it. I will not, tempting though it is, erase the slightly pretentious picture of Elena Kagan, or proofread for comma usage. I will just hope that all of the people whose opinions I care about enjoy it

HUMAN +

This summer I am working with the New York Hall of Science to develop an exhibit about assistive technology. It has been an interesting experience because it necessitates thinking about how the concept of disability should be presented to a public that may or may not have been exposed to it before. The exhibit, as I conceptualize it so far, will combine information about the science behind engineering assistive technology and the more human aspects of living with and thinking about disability. The creators of the exhibit have expressed an interest in "authentic stories" about how technology has been used to both compensate for deficiency and augment ability. I have been on the lookout for these stories, and have found some truly amazing things. For reasons that I can't quite put my finger on, one stays with me in particular. My supervisor told me about a prosthetic which was made, I believe, in India called the Janipur foot. The thing that distinguished this foot from others was that it allowed the wearer to kneel and remove their shoes. At first I didn't understand why this was terribly significant beyond being impressive engineering. Then someone pointed out to me that these adaptations permitted users to pray. I am not a religious person, but I really love this story. I love how technological advances provide a type of comfort that has nothing to do with physical issues. More later!!!

HUMAN

Checking in

I'm fully aware that it has been like 6.3 billion years since I've updated this. The semester just sort of caught up with me. And an amazing semester it was. I am now officially a Gov Major and a college sophomore!! Time really does fly. My new advisor is my ConLaw Professor Alice Hearst who I love. Also, I am relieved to have her as a mentor because it means that I will continue to be involved in all things law at Smith. Right now I am home for the summer where I am taking a few weeks off before I will begin work at the New York Hall of Science. NYHOS is currently in the process of developing an exhibit called Human+ which looks at the ways in which assistive technology can both correct deficiency in the human body and enhance what that body is capable of. I'm excited to help in any way I can. Even more exciting, the process has allowed me to connect with some lovely young people who face physical challenges. I will try to keep this updated with my experiences.

It has been a really busy, but pleasurable past couple of weeks, mostly because I feel like I'm really getting close to a group of people at Smith. They truly, truly are absolutely wonderful people. Still, I will be happier when the winter is over. It truly is hard to deal with snow with mobility issues. But my friends are so kind about it. They also manage to out-clumsy me on a pretty regular basis. Two of them were skipping and they both managed to slip on a patch of ice about the size of a quarter. It was actually quite impressive.

Also, I'm working on a moot court case. I have to write a fake judicial opinion in an eminent domain case about a city who wishes to condemn a blighted section of town to make way for a concert hall, library and restaurants. The difficulty is that the condemnation zone was expanded to include several businesses which are economically viable even prosperous. The city also refused several offers on the part of the owners to purchase land in these areas to expand their businesses. This led to accusations that the city had manufactured the blight. In, I wanna say 2004, the Supreme Court in Kelo v New London ruled that economic development, even when facilitated by a private company, is a public use under the meaning of the takings clause. However, there was a huge outcry after the decision which led many cities to make their eminent domain statutes more stringent, as the city in this case did. I think I am going to rule that the city would go to far in destroying economically viable businesses, when private developers would, at least at first, be the principle beneficiaries. But that would involve me almost..kind of...maybe...disagreeing with the Supreme Court. GASP

Snow Day!

So the last couple of days have been extremely hectic with me trying to get into the swing of classes. In addition to that, Smith has been positively slammed with the worst blizzard in recent memory. I got a really interesting response to my last post about Yoder and I would like to respond to it. However, I am still contemplating the questions that were raised.

In other news, I am headed to Providence College to debate this weekend. I love Smith Debate Society, but this type of extemporaneous speaking is still very scary for me in some ways because there is this lingering anxiety as a result of the issues last year. But I'm 100% sure my Smithies will take good care of me. On a related note, soon I'll start prepping for my Constitutional Law class Moot Court competition. I'm so excited but so nervous. I'll be in front of an 8 judge panel of Smithies. Umm HOT bench much? Gulp. I mean--yay- - I mean-- More soon!

First few days of classes

May I just say that Smith College has the single best classes on the face of the planet. It is so refreshing to wake up each day and look forward to class. They are just that good! I love love love Constitutional Law ( big surprise). It feels so good to be back doing what I do. My Prof. mentioned in passing my favorite case ever (Wisconsin v. Yoder). Apparently, she wrote much of her doctoral thesis on it. Goal for the semester: get up courage to ask her to discuss it with me. This is a case that I argued a moot court case about, and did research on. The question is whether Amish parents can be compelled to send their children to school after the age of 14, even though they claim (and the would know) that 14 is the age where Amish children need to learn skills associated with the Amish community and learn an appreciation for the Amish way of life. In short, the court ruled in favor of the parents and set out a balancing test by which a state's interest in providing universal education needed to be balanced with freedom of religion and parental rights to control the upbringing of their children. I love cases like this because they take 3 of the things that are most important to people, faith, family and learning and make them crash into each other and then clean up the mess.

In other news, Smith is now buried under so much snow. Knock on wood so far I've been getting around ok.

CP Reference on Family Guy

o let me preface this by saying that my ears go into high mode any time I hear a reference to CP in popular culture. There are two reasons for this. The first is that they are rare the second is that they are almost always negative, but I'm really concerned that people don't get the reference.

The dialogue (from Family Guy) went something like this

TV Reporter: And now...the inspirational child of the week so and so has Cerebral Palsy and wants to be a heart surgeon

Child: (In super warped, impaired voice) I just want to help people

Wife: Oh how inspirational

Husband: How long do they normally live?

Wife: You never see any of them with grey hair

The problem is less the inaccurate information, and more the implication that every disabled person is required to be inspirational. In the early 90s there was an extremely successful campaign to raise money for MS research which involved evoking sympathy by showing video clips of profoundly disabled children while speaking about the difficulties they faced. I feel like now there is never a normalized image of a disabled person, they are all involved in an epic struggle, their pain showing on their face.

Furthermore, this boy who has noble aspirations is being mocked. This is to be expected. Family Guy, unfortunately, has a go at lots of marginalized groups, but it's the fact that it's not like disabled people who actually want to be heart surgeons get a whole lot of air time. Let's face it, the boy on the show sounded stupid. His life goals were only cute because of the implication that they were wildly implausible. For the record, there are those who, despite or maybe because of, severe physical limitations wish to be doctors. Or maybe civil rights attorneys. Just a random guess