In between our New Orleans and Atlanta stops, we had the opportunity to interview an amazing woman, Karen Driver. Karen happens to be both the sister of two individuals with disabilities as well as the parent of a child with cerebral palsy. See the clip below for Karen’s description of her multi-layered connections to the disability community as well as her leadership role in providing services there.
Clearly, Karen has had a lot of experience navigating the often complex world of disability as it relates to her own life as well as her relationships with her friends and family. My first impression of Karen was overwhelmingly positive. Here was a woman who had driven an hour from her home to meet up with a few college kids and share her experiences with us and she was just so kind from the get go. Because of this, I was interested to hear that when she was my age, she had a pretty poor relationship with her siblings. The youngest of the crew, she described her bond with her brother and sister as not affectionate and also has had to deal with the fact that her older sister has chosen to not join in the caretaking of their two disabled siblings. As many sibs do, Karen often struggled with thoughts of who would care for her siblings after her single mom passed away. See below for her poignant description of these conversations with her mom.
Throughout our interview, Karen touched and elaborated on the differences between her family growing up and her current family unit of her typical daughter and atypical son. One thing that seemed extremely important to Karen was how affectionate and loving the family was able to be, given the presence of disability or difference. Also in this clip, Karen makes the comment that the sibling experience is a journey, which made us so excited to see this new double meaning to our blog title!
Given her very positive attitude today about being a sibling of two individuals with special needs, I was surprised to learn how bad her home life had been at some points. Specifically, during her brother's teenage years, he developed some more intense behavioral problems. When we asked her how that compares to how she balances her family members today, it became clear how much of a delicate balance Karen attempts (and almost always succeeds) to have between all of her responsibilities.
Something that many siblings have confided to us is that even if they are the younger sibling, they often wind up functioning in the role as the older sibling. I had the intuition that we had a very wise woman sitting with us so I thought I would ask her thoughts on this issue as the "baby" of a family of four. See below:
Another thing that both Ellie and I have encountered is people telling us that we are very mature for our age. I remember getting this comment, especially when I was younger and around my parents friends. When people told me that, for whatever reason, I never took it as a compliment. It always made me feel like I had failed at presenting a carefree front to them. Karen also spoke to how both she and her daughter often get told that they have "old souls". As she did with so many other topics, Karen was able to present this comment in a positive way that I hadn't thought of before. She explained that to her, being mature for her age meant that she just realized earlier in life the things that just don't really matter. Later in the interview, she elaborated on that by saying that being the sibling of someone with special needs has allowed her to let go of what other people think and start enjoying living her life much earlier than her friends who have not gone through that experience.
Karen's interview was certainly a source of inspiration to me as it made me reflect on how much can change and develop in a sibling relationship over time. Growing up, there were moments where I worried our relationship would be frozen in whatever was its current state. Talking with and listening to Karen began to help me shift my thinking about our relationship to a more evolutionary and ultimately hopeful perspective and for that, I am forever grateful.