Every so often, an interview comes along where one of us connects so soundly with the interviewee that it feels more like the start of a friendship than a research project. I had the pleasure of having this sort of connection with one of the sibs who we interviewed on the phone somewhere between Chicago and South Dakota.
Maddie* is currently getting her masters in education at a school in Chicago. She has twin older brothers names Elliot* and Allen* who are 4 years older than her. Allen has cerebral palsy and currently lives independently in Virginia.
From an early age, Maddie took on the “Mother Hen” role when it came to Allen and he rewarded her with being very affectionate towards her throughout their childhood. Interestingly enough, Allen would even call Maddie his older sister to others, despite being the older brother. When it comes to Allen, Maddie now cycles through a “typical sib” set of emotions, feeling overly empathetic, feeling guilty about not calling him enough, and a residual level of anger. She describes the sib relationship as simply one of heightened emotion.
Maddie has painful memories of Allen’s schooling growing up. Their neighborhood elementary school was not ADA accessible so he had to go to a school that was farther away. When he reached middle and high school, desperate to be cool, other kids would pay Allen to curse out a teacher or to do something equally awful for his standing at the school. As a result, in combination with his occasional violent outbursts, Allen was expelled from both their middle and high school and wound up going to a charter school for students with special needs. Maddie is the first sib we’ve met to have drawn a particular lesson from these violent outbursts. She hypothesizes that perhaps the reason that individuals with disabilities seem to have more behavioral problems in their adolescent years is that they, like everyone else, have these sexual desires and emotions that they are usually unable to fulfill. Maddie says that this realization has helped her to understand her brother’s actions so much better as an adult than she did at the time.
Maddie went to therapy for the first time this year. What drove her to seek help? Her one sib friend had told her that his brother had just passed away. Maddie felt sad for her friend but also was shocked to find herself feeling immensely jealous that he no longer had to care for his brother. She was disgusted with herself — how dare she feel this way? Maddie told me that she has enjoyed therapy so far and really appreciates the opportunity to talk out and come to terms with her feelings about her family. She said that they diagnosed her as the “classic sib” – a complete perfectionist, ridden with anxiety and guilt, driven to always make others happy, high achieving so that her parents could have a “perfect child”, the list goes on and on.
At the same time, Maddie is quick to mention the benefits that have resulted from her experience. She finds that she is able to deal with a broader group of people professionally and also believes that her experiences have prepared her to be a better and more compassionate teacher. She always served the role as “the negotiator” in her family, bridging the gap between her brother and her parents often. As a result, she has learned how to be patient and calm in stressful situations in her life.
Maddie had some great things to say about how it affects her dating life as well. She used to believe that she would have to date a doctor or a lawyer in order to be sure that she and her spouse could financially take care of her brother. However, as she’s gotten older, her views have changed. She now believes that it should really just be about “who loves me and him and treats us well” and to not sweat the financial aspects as much in her choosing.
She’s had a similar change relating to whether or not she would want to have a child with a disability. She said that “for the longest time, I really didn’t want to have a kid with special needs”. This view didn’t come from her dislike for people with disabilities but rather just the amount of time and resources that she saw her parents put into having a child with a disability. Nevertheless, at this point, Maddie believes that even if her child had some sort of special needs, because it was made by her and the person she loves, she would love them regardless.
Maddie ended her interview by telling us how proud she was of us for doing this project. She noted how she thinks that many in the sib community are afraid of sharing their story for fear that they will get backlash from the other sectors of the disability community. In order to combat that, Maddie thinks that it will be a movement of sibs speaking out together that will create the awareness that many of us crave surrounding sibling support issues. We’re glad to have Maddie as a part of this effort and thank her for her story.