A Story Revisited

During some of our long car rides thus far on this trip we have had numerous debriefing and brainstorming conversations about this project. One thing that we speak of often is how honest the sibs we speak with truly are. We recognize that our final product and conclusions may be skewed due to the fact that many of those that we interview have reached out to us, and therefore we lack some of the stories where sibs don't want to discuss their siblings or their experiences growing up. We wonder how biased our results may be due to this dearth of perspectives. That said, during our stay in New Jersey we spoke with one of the most honest sibs we have met with so far. We spoke with a college student who told us about her 17-year-old brother. When he was a young child, her brother had many seizures and tried many medications. By the time he was a toddler, it was clear that he had somehow been affected in terms of his mental development. She told us he has a lot of language problems, is nonverbal, and moved to a live-in facility when he was 16, where he is now. She told us that she currently has no relationship with her brother. She avoids talking to him and speaking about him to her friends and family. “I do not talk about him at all,” she told us. “I never brought it up with people.”

She was quite candid about her feelings towards her brother: “I don’t feel much affection for him. This is always really hard to explain to my friends.” Though she was one of the first people we've interviewed who doesn't currently feel much extensive affection toward their sibling, we have certainly spoken with some adults who were initially less affectionate and caring toward their sibling in childhood than they are now.

She also shared with us a possible factor in her reluctance to form a relationship with her brother. “I was a huge bookworm growing up.. a lot of times during the family outings I had my head in a book anyway which probably would have affected sibling relationships no matter what.” Though, admittedly, she would have “liked to have had a sibling at some point.” Another factor in her reluctance was "seeing how much work my parents had to do…I resented him a lot for that.” She expressed deep anger at her brother for taking away so much attention, time, and energy from her parents, something we have seen come up in many interviews even when we weren't expecting it. Though she illustrated anger towards her parents based on their “irrepressibly hopeful” attitudes, she does not talk with her parents about her brother and her parents have assured her that she will not have to bear responsibility for him later in life.

She and several other women we've interviewed have considered the possibility that one of their children will have special needs. Unlike her though, most of these women, have felt as if being a sib would be good preparation for that. She was quite honest about her fears: “This sounds horrible but … if I have a kid, I don’t ever want to have to be put in a position like the one my mom is [in].  I don’t care if it’s the day they're born [and something's different] or two years old. I want to be able to drop that that kid and run.”

She talked about her confusion as to why her parents have donated so much time to this cause that she can’t seem to comprehend. “I can’t quite justify the amount of attention my mother gave to my brother and all of the things that she did for him because in a way that has made me less compassionate.”

“After a while, you realize that they won’t get to the same place, so, why exactly are you bothering with everything?” “They’re not quite the same as [normal people].” Many people we have spoken with have shared with us that they believe that they are more compassionate people, especially in the special needs world, because they grew up with a sibling with special needs.  However, she has proven to be our first exception. “I see them as almost less than humans,” she told us. “In some ways, it has made me much less compassionate,”  because of all of the anger that she has towards her own brother.

Though the three of us found her interview to be quite jarring, we learned a lot from her interview and are very grateful that she was so incredibly open and honest with us. She was the first to share such negative emotions with us. Her feelings may seem like a rare occurrence, but it's possible there are many other people feeling the same way are just too afraid to share. For this reason, we appreciate her bravery and honesty.

Though I realize this post is getting irregularly long, I feel the need to talk about what happened after we sent this student a draft of the post we were going to put up. She responded with beautiful insight and truthfulness. As it turns out, our conversation with her prompted a conversation that she then had with her mom. She clarified that her mom reminded her that, "my friendships and close relationships are basically entirely based around verbal communication. If my brother were mentally capable but didn't take much interest in abstract topics, it's unlikely that we'd have a close relationship anyway." Reading this from her was very interesting, as it had not really come up in our interview at all.

She was also incredibly brave in telling us that she had blocked out much of her memories about her brother because her experiences were unbelievably difficult and hard to fathom.

"One reason that my brother was in put in a facility a year ago is because his behavior was pretty bad, and it was getting to a point where it was hard to control. He was loud in public (going to restaurants or other public places was not possible), and could turn violent and/or destructive. My mom also reminded me last night that (through hair-pulling), I was his first "victim", which probably didn't help me start out friendly towards him when growing up and definitely contributed to me avoiding him. In fact, the few times I dealt with him in high school, I was usually being used as a "trump card" -- someone who didn't see him very much and whose authority and physical strength could be used to force him to calm down and to go upstairs to bed when nothing else worked. I probably didn't bring this up when we talked because I had blocked most of this out, and it took talking with my mom to get me to remember these things."

None of this had come up in our interview. As someone who also went through a lot of memory blockage, reading her words was not only comforting that I am not the only one but also a testament to the true turmoil that she suffered during childhood. From what she responded to us, her feelings towards her childhood are not only justified but incredibly vital to this study.

Her last response to our post verbalized a trend we have seen so many times during this first half of the trip and will no doubt come up again.

"I am aware that my lack of affection for my brother is very much something I could develop only because I had the privilege of not having to help take care of him. My parents are well-off enough that we could use respite workers." She also told us that her mother is part of the medical field and that helped her to "navigate the world she was thrown into and find people who were really helpful. All of these factors meant that I didn't really have to help at all. My brother became a sign of what I couldn't do (go out often with my parents, have a peaceful dinner) but not what I had to do (spend time looking after him), so I wasn't ever forced into proximity with him. Apparently he does have many moments of sweetness, but as you can only take the good with the bad, I was sheltered from both."

The dual experiences of learning about this college student have been incredibly insightful to all of us. We are happy that we were able to spark a conversation within the family and also grateful that she and her mother were both so open with us.

 Ellie (with help from Renee)