Female sibling

A Myriad of Roles

Another theme we have seen over this trip has been the avid participation of sibs in the arts world, specifically theatre. I, too, was an ardent member of the theatre community for many years up until high school. For me, and for many of the other sibs involved in the arts we have spoken with, the world of performance made for an excellent way to get out of the house, steal some much-fancied attention, and make a name for myself outside of the one my family provided for me. In her case, she grew up in an artist community, immersed in the drama, so to speak. I met Hannah* at an acting camp that she and I attended for many years. By the time I found out that she was also a sib, she was already a counselor while I was still a camper. Having said that, this story has nothing to do with performance on the stage. Hannah has been watching out for her younger sister, Julia*, for most of her life. Like many others, Julia has been given a range of diagnoses over the years, but her current one is Asperger’s. On that note, Hannah speculates that “a different diagnosis doesn’t mean that she’s different, it just means that someone is calling it something else” and is basically just for medical and services purposes… a firm diagnosis is really only good for legal and political reasons.” I mention this because it is a huge part of Hannah’s role in Julia’s life. Both Hannah and her parents all share power of attorney over her sister. We asked her what it is like to play such an integral part in decision-making in her sister’s life. She responded that she thinks she offers up another perspective in those choices, which she believes is helpful to her parents.

We spoke with Hannah in great detail about social issues regarding her sister. “Watching the difficulty she experienced in trying to assimilate into the culture of our school put me in this position of, rather than making friends because I enjoyed it, I went about making friends so that other people had friends. I would always find the person that no one was talking to.” Similarly, she chose her friends based on comrades whom she knew would be okay also spending time with her sister. She told us that Julia doesn’t really have any friends of her own; most of them she shares with Hannah. It took Hannah a long time to figure out what type of relationship she and her sister could truly have because she is constantly protecting her sister and has seen what happens when “her social situations spin out of control."

Like many others sibs, especially those we have interviewed who grew up in metropolitan areas, Hannah immersed herself in academics. There was the unspoken expectation that she would be self-sufficient and “to me that translated into making sure that I never got in trouble and I always had great grades and I never created a situation that they had to deal with.” “Rather than succeeding in other places in my life and having that be enough, I think I’m still very fixated on academic success… because of her,” she told us. And, she has taken this philosophy with her past high school. Now a triple major at a prestigious university (psychology, neurobiology, microbiology), she strives to understand the human brain while also running a bagel business and a theatre company. And, she just got married.

While it appears that her life is a stimulating, constantly busy, rollercoaster, she talks about how intensely growing up in her household affected her personality now. “I’m reluctant to talk about myself with people, which I think comes from most of my concerns as a kid being about [Julia] and whether or not she was okay, whether she was safe, and sometimes that makes it hard to have social interactions that are comprised of small talk because I don’t quite know…sometimes it’s hard to remember that information about me might be pertinent to a conversation.” She told us how difficult it is for her to speak openly about her feelings in her family. “I always felt like it was my job to not have feelings about it or want to talk about it,” a sentiment we have unfortunately seen in many other sibs’ reflections on growing up. Though she grew up in the theatre world, she now prefers the spotlight not to be pointed on her.

“It’s hard to know what to want sometimes,” she told us regarding her sister. She told us that she struggles with some of the decisions her sister makes and how they don’t have that much in common and how her sister has put her through a lot which has made it arduous to have a relationship with her. “Letting go of the really strong desire to have a sibling that I could be unafraid of letting my guard down [with],” was a notion she had to come to later in life when she realized that she probably would not have the “typical” sibling relationship with Julia that her friends and cousins had with their siblings.

While I had already looked up to Hannah from her amazing camp counselor skills, this interview solidified an even greater appreciation. Like many other sibs we have spoken with, Hannah, it seems, questions whether or not she has the “right” to be affected so strongly by her sister. ”I hate to say, put me through a lot, but it feels like that sometimes,” she told us honestly. Quiet and thoughtful, her many facets highlight a reflective nature that is continually striving to learn more about “raising the awareness of the holistic nature of a person’s life.”

*Name has been changed

At the intersection of rage and reflection

During our Chicago visit, we had the opportunity to interview employees of access living. One is Scott, who is an amazing advocate for people with disabilities, especially in terms of securing them supports so that they can remain in their own home independently if they please. Scott is very motivated by his anger about the state of disability services currently. Scott is part of an army family and is a veteran himself. He has two siblings with some sort of disability. His brother was diagnosed with cerebral palsy at age 2 and his sister was diagnosed with dyslexia.

We always ask sibs if they think that their experience affected them at all academically. That question is based in our knowledge that many sibs become high achievers, either from a place of wanting to not take for granted their intellectual capabilities or a desire to be "the perfect child" for their parents. Scott quickly let us know that he did not fit the mold, telling us that he "passed high school by the skin of his teeth". However, he reminded us that it's important to not only think about maturity and growth in the academic arena. See below:

Anger is an emotion that comes up pretty frequently in our conversations with sibs. Normally this anger has something to do with either the behaviors that their sibling displays or their feelings of resentment that they didn't get more time as a child. Scott's anger was a different form all together, and was aimed not inside the family but outside its realm.

Scott used this phrase again and again, the idea that our society was wrong, and oppressive, and in many circumstances even awful. Here, he describes the problem with the diagnosis process for families, and the psychological harm that it could potentially cause because of the specific and recommended paradigm for coping.

Many of our Chicago sibs spoke of the dire lack of services in Illinois. Here, Scott makes the perfect metaphor of the level of struggle to secure the necessary supports for individuals with disabilities.

This made the perfect segue into Scott's professional life. Scott works for Access Living, an organization that helps provide the appropriate supports so that individuals with disabilities can continue living independently and not be moved into a nursing home or more institutionalized setting. Simultaneously, Scott volunteers with ADAPT --- taken from ADAPT's website --- "a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom." Listen to Scott describe ADAPT's past and current work:

Scott's story eventually took a tragic turn. His brother, while living independently, tragically died after attempting to clean up an accident he had made. Scott has so much justified anger about this incident. For months, he and his mother had searched for someone to come in to help his brother so that he wouldn't have these long periods alone. He details his struggle here in these next two clips:

I'd like to end his story with his description of his brother, simultaneously beautiful and so revealing about the importance of prioritizing independence for those with disabilities.

 

Claire

Speaking from Experience

From now on, when I think of truly honest people, I will think of Renee S. In Chicago, we met with Claire’s friend’s mom and I can definitely say that the next time I am in Chicago, I will be taking her out to coffee. She spoke with eloquence and integrity about her older sister whom her parents always described as “slow” and was determined to have a very low IQ when she was five-years-old. Though incredibly high-functioning and extremely emotionally intelligent, doctors told Renee’s parents that her sister should be institutionalized because she was, as characterized then, mentally retarded. However, her parents refused to send their daughter to one of these places. Most of this negation of that option came from the fact that Renee’s parents were both Holocaust survivors. Though slightly unrelated to her experience as a sib, below is a description of how she thinks that her parents background affect their parental choice.[youtube=http://youtu.be/v7ze5tgisog] Even though there was a five-year age gap between she and her sister, her mother insisted that they flourish “like twins,” buying them the same outfits and pressuring Renee to take her sister with her whenever she went out. 

Even after she got married her mother still had the feeling “whatever I had, my sister should have.” Now that both of her parents have passed, Renee is her sister’s legal guardian. After many years, she has built the courage to find a life her sister is a large part of and a life that is not centered around her sister. She finds her sister activities and takes her out every week and plays a huge role in her sister’s caretaking. “I know that it is up to me and there is no one else and I have to do it,” she told us. In her interview, she called this distinction selfishness, but I commend her for her bravery in taking up more space, something she was unable to do during childhood. It is even more exemplary to note that she does all of this by herself, as her older brother is rarely in the picture regarding helping her sister. She has taken her challenges in strides. In this next clip, Renee talks about how difficult it was for her to always be looped into the same boat with her sister. 

She also told us about her parental communication regarding her sister. 

Now that she is in this caretaking role, she also confided in us about her goals for the future regarding her sister, aside from the common difficulty of finding the correct housing situation for her (right now, her sister lives in her late parents' house with live-in care).

Another incredibly interesting note that she had to offer was how she explained her sister to her four boys. Actually, she told us she didn’t have to do too much of the talking at all, because of this story that occurred when her boys were in middle school that helped acclimate their knowledge of their aunt. [youtube=http://www.youtube.com/watch?v=BpebSP0mqVE]

As a sib, we hope more people can hear Renee’s story, because this blog post definitely does not do it justice. She, too, highlighted the need for our project, exhibited in this clip below. 

We absolutely loved hearing Renee’s story and going out to a real, Chicago-pizza dinner with her family afterwards.

Ellie

A First-timer

Our last night in D.C. we interviewed another recent college graduate who spoke incredibly eloquently about his eldest sister who is 25 and has severe autism. Interestingly, he confided in us that this interview and conversation was the first time he had ever spoken about his sister. For him, and for us, it seemed that our long conversation was a catharsis amid his complicated, busy, exciting life.

Aly was an incredible orator and told his story with eloquence and thoughtfulness. He told us how his family had moved from Pakistan to the United States specifically for the support they could receive for his sister. Unfortunately, they weren’t acquiring the same aide in Pakistan.

Aly also spoke with us about some of the raw experiences that went along with being his sister’s brother.

He also spoke about compartmentalizing his life, a trait we have seen in many other sibs.

One of the most important things we learned from speaking with Aly was how imperative communication is for sibs.

Even after we turned off the camera we ended up talking to him about being a sib, about emotions, about life for well over an hour. He told us how grateful he was to finally be able to talk his story and he was genuinely interested in hearing ours as well. It is one talent to comprehend and understand someone’s experiences, it is another one to empathize with them. To Aly, we are forever grateful for your charisma, your bravery, your stories, and your friendship.

~Ellie