California

Building Bridges

Our last sib interview of the trip was with a lovely 27 year old named Audrey. Audrey's sister is 3 years younger and has both autism and Moyamoya disease which is a condition where the arteries around your brain get progressively clogged over time. During our interview, it became clear what a wonderful advocate Audrey is for her sister as well as the sibling community as a whole. When she was in high school, Audrey started to worry about how she could integrate her sister into her life outside of the house. She desperately wanted her friends to know her sister but struggled at first to think of the right way of going about that. Eventually, she had the brilliant idea of starting a social skills club at her middle school. Listen in for her description of that experience:

As a result of her experiences with the club, Audrey was able to have a real shift in terms of the way she viewed her relationship with her sister. She spoke to how maternal she often felt when she was much younger but how she eventually transitioned away from that role. These two clips describe how this transition came to be.

At the same time as Audrey was creating new social opportunities for her sister and her friends, she was also helping educate parents in the Korean community about sibling issues -- what a champ!

Audrey was sure that her next step was to become a disability right lawyer in order to continue advocating for people like her sister. But, that's not where she's at today. Here's her story of her professional progression.

One major theme in our interview with Audrey was communication (and at times lack thereof) between parents and siblings. The next clip is Audrey's personal opinion about why there are often barriers there.

In terms of her future, Audrey craves having a network of sibs her age. She doesn't necessarily think that support groups are necessarily sustainable for people in her age range (18-35) but would love to have a simply network of people that she would know she could turn to with questions or concerns. One of our major goals is to create some sort of community for people in that exact age range so it was nice to hear that come out in an interview as a major need.

Finally, we asked Audrey our last question: What's a question you would want to ask other sibs? Here's her response.

Our interview with Audrey was a fantastic way to cap off our trip and we couldn't be more thankful for her honesty and advocacy on behalf of sibs everywhere.

 

Claire

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

Fitting Together the Puzzle Pieces

It’s always interesting to me when we interview sibs who are both incredibly positive and reflectively negative about their experiences growing up with someone who has a developmental disability. I think something I have been looking for this whole trip has been the perfect combination of solidified good and bad. I think on our last day of interviewing, in LA, I found a woman who exemplifies these traits. We spoke with Liz in LA about her experiences growing up with her brother who is two years younger than she is and on the autism spectrum. She says she wouldn’t describe him as high functioning, but he is verbal, has had part-time jobs, and has a girlfriend.

We've found that the best word to describe the sibling relationship is usually just "complicated" and we talked a lot about that with Liz. "There are a lot of mixed feelings...Complicated is probably the best word for it."

Growing up, she played many different roles in her family. She was the protective, motherly role but also the role of the sister who had a completely separate life from her brother at home. Liz’ reflection on her role in the family was intriguing and very self-reflective. Her parents consistently told her throughut her childhood, “you are his sister, not his mother.” The issue was, Liz didn’t know how to be a sister to her brother.

“I don’t know how to be his sister. I know how to be his parent because what that meant was to take care of him.” She told us bravely about her confusions about her role in the family because she really didn’t understand what being a brother to hers was supposed to look like, as opposed to a parental role that she could easily emulate from her parent’s actions. “What do brothers and sisters do? I have no clue.”

For example, Liz opened up to us about an intense memory she has from elementary school. She told us that she once told her brother that she loves him. And he remained silent. After a while, she asked him if he knew what love meant and he told her ‘no.’ Liz took this moment with her for the rest of her life. . “As a child, that was just profound for me. I am going to grow up making sure that people feel love.” Aside from proving to be the best friend she could possibly be to all of her friends (and she still has friends from childhood and college, to prove her point), she took her brother’s lesson with her in her professional career. Liz is a casting director and she told of the direct impact her brother has on her work. It’s a “great way to connect with people daily and to help people realize their dreams and realize what they want to be doing…the audition is always important to me to make it a safe space…even if they don’t get the job, they go home knowing that they did their job today.” She also spoke on the arts world as a whole, a world she has been a part of since childhood.

The theatre is “a place where there are all these people are feeling things and acting and doing theatre and traveling around the world and that saved my life as far as being able to deal with my insecurities and shame and getting so deep into ‘what are we going to do about my brother?’.” She talked with great warmth about how impactful the world of performance has been on her life. On sibs: “We don’t have that place to freely express ourselves. We don’t have a place to say ‘I hate this. This is embarrassing. I am full of shame. I don’t want to carry this around anymore...I feel so guilty for wanting to be free of this.’”

“When I think about the things I love the most about myself, they are directly contributed to [my brother]. I am absolutely a people person” She went on to speak about her job. “I’m a cheerleader, I’m an interpreter, and all of that is directly because there is this person in my life that I had such a hard time reaching. That was my focus. I am going to be able to reach people. I am going to be articulate. I am going to talk to people about their feelings because here is a person that I can’t really talk to.”

For me, the most touching and inspiring parts of Liz’ interview were when she spoke, eloquently and passionately, about how difficult life with her brother was and is and how awful she feels about feeling that way, something I truly resonated with. “When he is easy, it’s easy to be with him. And then there’s the other side,” the side where he is not an uncle or a brother-in-law, but a brother. A brother who has embarrassed her, given her anxiety about both of their futures, and pushed her to extreme limits emotionally. She told us that as a child, she struggled to talk about him. “It’s not even in our make up to make people feel bad or uncomfortable,” and she didn’t want to “burden” anyone with the unnecessary, especially since she was “fine,” as we have seen many other sibs describe themselves. “I know what he is doing… but I don’t know how he is doing”. She said that she feels a lot of guilt about the disconnect but is not sure how or if she wants to change that. “I should be doing more but do I want to be doing more? It’s always challenging.” She told us that she once heard someone liken having a disabled sibling to having a superpower. The superpower? Being able to read people. “What is the word that it is? It’s just so raw. It’s such a fundamental thing. A part of your growing up, this person”

I’ll finish off this long post with our last portion of our conversation with Liz. We always end each interview by asking the interviewee to pose a question to any other, ever. Liz’ question was unique. “What was your darkest thought?” Though I have suppressed over and over the reality that my sister has affected me in more ways than I can count, Liz’ last question assuaged my own feelings and the feelings of many sibs that we have spoken with about the dichotomy between a sibling relationship and the actualities that are bequeathed within it.

Ellie

“it’s such a hard thing to explain, anyway, because, there’s no word, like ‘she has this or that’”

Over the course of the past two months, I have become very conscientious of the role that language plays for me in my life. Language is the basis for most of my communications, simple and complex, and provides me with stepping stones that lead to paths that lead to decisions and my growth. So what happens when language is not an option?

Before my sister was diagnosed as on the autism spectrum (Pervasive Developmental Disorder-Not Otherwise Specified/PDD-NOS), I faced many challenges associated with describing her to people. Of course, I could always spew out her learning disabilities but those never came close to depicting and illustrating her intense behavioral issues that defined life at home. Now, even though autism does not explain her in the slightest, at least I have a word to use that the general public is fairly familiar with. We spoke with two college students in California who do not have the luxury that I now have when I describe my sister to people. Interestingly, all three of our siblings share common ground behaviorally. We spoke with Mike* and Emily* who both have middle school-aged sisters. Mike’s sister is a 13-year-old twin and has been diagnosed with depression but is currently undergoing a new diagnostic assessment relating to her behavioral problems. Emily’s sister is also 13. Her sister was adopted when she was 2 from Russia and has many learning disabilities, processing issues, and attachment difficulties.

Both Mike and Emily talked in great detail about how hard it is for both of their families to constantly struggle with household peace. “All of the behaviors she has are like relatively normal things. If they happened once,” Mike said, “but because they happen so many times, they end up having this huge impact.” He told us that his family has given up on the concepts of family dinners or vacations due to his sisters rages about minute details (like specific foods at the table or not being able to see because someone was in front of her). Emily talked about how high school became increasingly difficult because she was unable to do her schoolwork due to the constant screaming and tantrums her younger sister still throws.  They both talked about the maelstrom that has been growing up with their sisters because of such intense behavioral problems.

How can a sib describe their sibling when they don’t have a name to quantify or qualify the amount and extent of their siblings’ behavioral difficulties?

“How much of this is actually some diagnosed thing? Where do you draw the line?” Both Mike and Emily discussed the dubiety associated with trying to figure out if their sisters’ behaviors were due to cognitive issues or their sisters’ personalities. When the two of them have tried to explain their household chaos to others, they literally find themselves at a loss for words. “People don’t get it and they judge me for being mean to her,” Emily observed. “I always feel like a bad person for disliking her so much… and it affects how I view myself now.”

“It was both frustrating and scary. Because on the one hand, I was like I don’t want to be like her, but at the same I was like, well if I feel the same way as she does about all of these things and I manage not to destroy our family, I don’t know why she can’t do that.”

These interviews brought on something we hadn’t quite encountered yet on our journey. How can sibs identify as sibs when they themselves don’t even know what is truly going on in their sibling’s minds? Though I strongly believe that diagnoses and epithets have drastically changed the face of the disabilities world in a multitude of positive and negative ways, I do believe now that, at least for sibs, there is some comfort in being able to have a piece of language that begins to identify the complications that go along with being a sib.

*Name has been changed

Ellie

Cosmic Injustice

A topic we haven’t talked specifically about yet over the past few months has been sibling amiability. In some of the interviews that we have conducted, there is this notion that the sibling that will be taking on the caretaker role later in life does not actually have an amicable relationship with his or her sibling and yet takes on the role regardless. We spoke with a young man, George*, in LA about this struggle.  George is a philosophy PhD candidate as well as a J.D. student at UCLA. He is eloquent and reflective and was a pleasure to speak with about his younger brother.  George’s brother is one year younger than he and has an intellectual impairment. In the beginning of our interview with George, it appeared that he and his brother had a pretty decent relationship. He said they fought a lot as kids, but most brothers do, and that he doesn’t think he was “traumatized” or “burdened” by the experiences he had growing up in his house.

Here is where his story gets increasingly interesting. George talked a lot about how he doesn’t think that his brother really likes him. He told us that if something were to happen to his parents and his brother had to move in with him, he would be okay with that situation but he doesn’t think his brother would be too happy.  He even told us that his brother has connected more with his friends and girlfriends and if his brother had to move in with him, he might have to use one of them as a mouthpiece while he acted as a “man behind the curtain.” He told us that his brother is “really good with people, just not me or my dad.” We tried to dissect this a little bit more. George told us that growing up his dad was always the disciplinarian in the house in comparison to his mom who focused more on providing a loving, calm household. George confided in us that he often sided with his father's view that manners should be stressed and healthy regimen should be implemented when possible. He believes that his brother is high-functioning enough to have had more responsibility than he did have growing up.

What’s fascinating about George’s story is not only how much of his life George is willing to alter in order to take care of his brother should that have to happen but also how hard George is going to have to try to gain some of his brother’s trust and try to make a relationship with someone that is clearly not interested in making a relationship.

His philosophy student self came through by the end of the interview when he concluded that the whole situation is really a “cosmic injustice.”

Ellie

*name has been changed

Ciara

Ciara is a wonderful, intelligent, and aware 14 year old. She's the middle child and has two siblings with developmental and physical disabilities. Her older brother has autism and she describes him like a "big, gentle giant"  and a "teddybear." Her younger sister is 12 and has epilepsy. She is closer with her younger sister than she is with her older brother, explaining that she and her sister "just click". There's often a newfound sense of annoyance towards immediate family that comes with being a 14-year-old, but Ciara didn't exhibit any of that. Instead, she makes time every week to spend with her siblings, watching TV with her sister and a Disney movie with her brother.

As a young child, she had moments when she felt embarrassed to be around her siblings in public. Despite that and other social challenges, her friends know and appreciate her siblings. Here she explains how they have affected her socially: 

What stood out the most to me was Ciara's ability and willingness to be an advocate for her siblings. This isn't unusual to sibs, but Ciara exemplifies such passion and charisma at such a young age. She's thoughtful, well-spoken, and educated about how best to campaign for the disabilities community.

"I've always been a big advocate for special needs because a lot of people don't know about it". When she was younger, her motto was "If you stare at them, I glare at you."