Get to Know Us

We answered some very serious questions about ourselves:

Ellie

ellie (2)Where are you from?
The Bay Area, California

Where do you go to school?
Brandeis University

What are you studying in school?
Near Eastern Judaic Studies and Psychology

You have two hours of free time. What do you do?
I love this question because I am absolutely atrocious with free time. I am a huge fan of schedules and 61 minute hours that go along with 25 hour days and free time almost scares me a little bit. So, I am involved with a lot of things on campus. I love reading so if I have a good book nearby, then that is definitely my first choice. Otherwise, I could probably watch Gilmore Girls or the Parent Trap all day long.

What are your pet peeves?
Grammar mistakes in professional situations, posting grades on Facebook.

Who was your middle school celebrity crush?
Jeremy Sumpter (from Peter Pan)

What’s the weirdest food you’ve ever eaten?
Gefilte fish

If someone came to your house for dinner, what would you prepare?
I would never subject someone to my cooking.

Pick two celebrities to be your parents.
Michelle and Barack Obama

What’s your Starbucks order?
Peet’s…

Renee

me(2)Where are you from?
Houston, Texas

Where do you go to school?
The University of Texas at Austin.

What are you studying in school?
Plan II Honors and I’m considering adding Urban Studies, Public Health, or American Studies.

What are you involved in at school? What do you do in your spare time?
Over the past year, I became very interested in issues related to food justice, food security, and agricultural sustainability. I generally devote my Saturday mornings to helping out at UT’s microfarm, where we are growing fruits, vegetables, and herbs in an effort to increase access to fresh produce around campus. I’m also involved with my school’s Best Buddies program and the Creative Activist Network. In my spare time, I love watching Parks & Recreation, reading articles, and spending time outside.

What are your pet peeves?
Currently? I can’t stand having dirty feet or a dog that’s trying to lick my face.

Who was your middle school celebrity crush?
It was definitely Channing Tatum after I saw She’s the Man.

What’s the weirdest food you’ve ever eaten?
I don’t eat weird foods.

What do you think about when you are alone in the car?
The music is probably too loud for me to do any serious thinking.

If someone came to your house for dinner, what would you prepare?
Quinoa salad with mangoes, cucumbers, cranberries, blueberries, and a lemony olive oil dressing. I’d probably also make some sort of pasta and chocolatey dessert, but rest assured, the chocolate would be ethically sourced.

Pick two celebrities to be your parents.
Can I pick a grandmother? Because it’d be Ruth Bader Ginsberg.

What’s your Starbucks order?
If I had to order from Starbucks, I’d want their fair trade brew, which they never want to make for me… So then I’d just get tea.

Claire 

claire (2)Where are you from?
Houston, Texas

Where do you go to school?
Princeton University

What are you studying in school?
History (I’m so one-dimensional!)

What are you involved in at school? What do you do in your spare time?
It’s hard to compete with Ellie’s 17 extracurricular activities but I try to do a lot on campus also! I spend a lot of time involved in education-related activities (everything from tutoring at a local prison to coordinating a college counseling project) and I also love working with the Pace Center, our hub for all things civic engagement. I tend to have two extremes: either hyper busy or supremely lazy tv marathons in my bed but that’s college kid life!

What are your pet peeves?
Using humor as a way to justify making fun of people, ditto to posting grades on Facebook.

Who was your middle school celebrity crush?
Oh gosh is it bad that I don’t remember? Oh wait, Orlando Bloom. Definitely.

What’s the weirdest food you’ve ever eaten?
Vegan cheese

What do you think about when you are alone in the car?
Normally I just belt (badly) to whatever country music is playing.

If someone came to your house for dinner, what would you prepare?
Scrambled eggs and oatmeal chocolate chip cookies and maybe guac.

Pick two celebrities to be your parents.
Jennifer Garner and Ben Affleck

What’s your Starbucks order?
A marshmallow dream bar aka rice krispie treat!

Want to know why we are even going on this journey?

From Claire:

Hey blogosphere! My name is Claire and I’m a sophomore at Princeton. I’m writing this entry to give you a little background to our journey this summer. So Princeton offers this super amazing scholarship called the Martin Dale Summer Award that provides funding for sophomores to spend the summer having a transformative experience whether that be in order to further explore a personal interest or complete a service-esque project or anything in between. After attending an info session about the scholarship, I decided to do a bit of a combination of the two. My older brother Adam, who is 24, has Asperger’s Syndrome. I’ve always known that our bond as siblings had a meaningful impact on me but I had never taken the time to really reflect on what that impact exactly was. From my application:

As Princeton students, we walk around with a lot of identities stamped on us. We have our residential college, our extracurricular activities, our majors and our friend groups. But those are just the identities that are given to us once we step on campus. Each of us has other facets of our identity that we must reconcile with who we are in our on-campus personalities. For me, the major factor that is impossible for others to see is that I am a “sib”.

Being a sib is hard, complicated and rewarding. Try as the how-to books might, it is impossible to describe our lives in the context of a paragraph or even a single book. Being the “normal” child comes with an invisible and pervasive weight that many fail to recognize. Whenever my family faced challenges, I always saw my role as being the one to quietly keep things together. What was often even harder than navigating my own family life was when I would start to compare my family to my friend’s families. The insidious feeling of jealousy started to color all of my family memories until it was hard for me to stop thinking about how my brother and my family weren’t “right”.

Then, slowly but surely, I started to discover other people who were also playing the role of the “normal” sib. These people “got me” more than even my most well-meaning friends. They allowed me to have a space where I could freely talk about how I felt about my family and specifically my relationship with my brother. As I have gotten older, I have become more and more interested in what we as sibs have in common. I started to see the potential for a new narrative about disability, coming not from parents or doctors or psychologists but from sibs like us.

Four months after writing those words, I could not be more excited to embark on the adventure of my life with two of my best friends, Renee and Ellie. We will spend the summer driving to city after city meeting and talking with sibs about their experiences. We’re looking to talk to sibs of all ages and who have siblings with a whole range of disabilities and challenges in order to get as diverse a perspective as possible. Throughout our journey, we will post our reflections on this blog with the intention of giving readers as many entry points as possible into this conversation around what it means to be a sib. This entry point concept is one of the most important parts of the project to me as I always found that the only depictions out there of sibs tended to be one note; either overwhelmingly positive narratives of sibs who are so thrilled that they have a sibling with special needs to generically negative comments about how parents should make sure to avoid sibling rivalry. I want to provide people with as many different viewpoints as possible in order to texturize the narrative a bit more and allow as many sibs as possible to see their view represented by our blog.

One of my favorite quotes of this year has been: “Not all who wander are lost.” As I tried to decide what to do this summer, I vacillated back and forth between structured internships that clearly linked to my career aspirations and this whimsical, off-the-beaten-path road trip idea. In the end, I decided to take the plunge and spend 7 weeks driving all over the country, learning, living and hopefully laughing lots along the way. In other words, this summer I hope to find a piece of myself as I wander all across our United States.

From Ellie:

My name is Ellie and I am currently a student at Brandeis University (’16) double majoring in Near Eastern Judaic Studies and Psychology. I met Claire and Renee at summer camp in 2011 and could not be more excited to spend another incredible summer with two of the most inspirational women I know.

My sister, born a year and a day before I was, was diagnosed on the Autistic Spectrum, along with Attention Deficit Hyperactivity Disorder, Non-verbal Learning Disorder, Pervasive Developmental Disorder, and many other neurological deficits when she was just a baby when my parents adopted her. She just started a residential program in Northern California.

I spent the majority of my life hiding the fact that I am a sib. I refrained from telling people about my family, my home situation, or my feelings about the two. In essence, I didn’t know how to tell my story. I could never seem to find the right words to use and I could never predict exactly what types of responses I would engage. After many years of contemplation, I have come to the conclusion that my underlying fear was that of others finding out that I don’t hold a never-ending, undivided, unbreakable love for my sister. I don’t even know if I could put into words how I feel about her. She is loud and quiet, amiable and malicious, altruistic and cruel, family and enemy.

Hopefully, the experiences I will gain this summer will ease my communication strategies for explaining what it was like to be the “normal” child growing up with a sibling on the Autistic Spectrum. For now, I will try my best.

Throughout my childhood, I struggled a lot with figuring out what my role was in my family. Though I was the younger sibling, I had the responsibilities of an older sibling, making sure my sister was always safe, comfortable, and, most importantly, not being made fun of or abused. I often wanted her to be able to stand up for herself but didn’t want that at the same time. I constantly felt the need to be the “perfect” child, the one who didn’t throw tantrums about not being able to watch more TV and the one who didn’t struggle to read simple children’s books well into middle school. In my head, I subconsciously fought an inner battle to be the quintessential child for my parents. I not only wanted, but needed, to be someone that they could be proud of. And, for my sister, I wanted to be someone that she could look up to. I partook in even greater conflict trying to receive the attention my sister always gained, for her educational pursuits, constant car-rides to and from various therapists and groups, and outbursts. I battled for my parents to read me stories, or take me to the movies, or to have long conversations about me well into the night.

I am embarking on this journey because I am unexplainably curious, motivated, and ready to take on this difficult factor of my life. I have been avoiding talking about it for too long and I don’t think I can keep it up for much longer. I am ready to learn and I am ready to listen. I am ready to find others like me. I am ready to find others unlike me. I am ready to hear more stories.

From Renee:

My name is Renee and I am currently a student at The University of Texas at Austin (’16). I’m in the Plan II Honors program and am thinking about studying Public Health, Urban Studies, and American Studies.

I’ve known Claire and Ellie for some time now – I met Claire in 9th grade and Ellie right before 12th grade – and they have become two of my best friends. From the beginning of our friendship, I could tell they were both amazing, intelligent, and caring women, and they continue to be two of the most inspirational people I know.

I remember the day I learned Claire’s older brother had Asperger’s. She stood in front of a room full of teens, sobbing as she spoke about her brother. Until that point, most people didn’t know her brother had Asperger’s. She was launching an initiative to include teens with special needs in our youth group, BBYO. Until that moment, I hadn’t really considered the ways in which having a sibling with a developmental disability affects the family dynamic. I had spent many hours (and through the rest of high school would spent countless more) around people with disabilities and I rarely thought about their families and their family life.

Somehow, Claire and I found out that Ellie had an older sibling with Autism. Almost nobody else knew that about Ellie, but I could immediately see how Claire and Ellie now understood each other on a level that I never would. The three of us spent a lot of time that summer just talking about our feelings. Claire and Ellie would talk about their siblings and how it affected them growing up. Sometimes, Claire would just tell Ellie, “Just cry. It’s okay to cry.” Usually, I just listened. Through the two of them, I discovered a whole new perspective of disability.

I’m not a “sib.” I will never have the same perspective that Ellie and Claire do, but I hope that through this journey I can begin to understand how being a “sib” affects development and the family dynamic. I hope that our project can reach all sorts of people – “sibs,” people that have never met someone with special needs, advocates, friends, and family, you name it. This summer, Claire, Ellie, and I will become storytellers. Through photographs, videos, and blog posts, I hope we can help people understand disabilities in a new way. I hope we can present the range of perspectives and experiences that come with being a “sib” – the range of perspectives and experiences that often can’t be found in self-help books, documentaries, or the advice of psychologists and doctors.

I’m excited to go on this seven week journey and begin to tell the stories of families all across the United States. I hope you’ll keep reading this blog, as we’ll update it regularly. If you’re not a “sib” like me, I hope you’ll see that there is a whole different side to disabilities that you probably haven’t explored before. And if you are a “sib,” I hope this blog somehow helps you deal with your own experiences. But whoever you are, I hope you find meaning in the stories we tell.

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