One of the questions we ask in every interview is: Did you know any other siblings of people with disabilities growing up? The most common response we get is no, but there’s always a caveat. Our typical interviewee will say: No, but I’m sure there must have been other sibs around but because so few people talk about their experience, you might never connect with people about your common experiences.
I interviewed Joan this morning who is a perfect example of this phenomenon. Joan and I knew each other throughout high school, served on the board of an organization together and yet we never once spoke about the fact that we were both sibs. It was only later on when Joan arrived at our summer conference for Sibs’ Journey did we ever first put the pieces together. I hope you enjoy reading her story, which we hope as always will push more siblings to feel comfortable naming and sharing their experiences so that they too can feel a part of this greater community. __________________________________________________________________
Joan has two brothers: one older brother who has dysgraphia and dyslexia and one younger brother who is typically developing. When I asked Joan what the challenges were growing up with a sibling with a disability, her answer surprised me. She told me that, “that’s the thing, there were no challenges growing up with Ted.” For Joan, she didn’t start to experience challenging emotions around her family situation until Ted got married this past year. Ted married Kate, who Joan describes as having disabilities that are more developmental and social than Ted’s as she has severe OCD as well as some other developmental pieces.
Having Kate join their family has been quite challenging for Joan, who describes herself as being very protective of her older brother Ted. She wants what’s best for Ted and fears him being taken advantage of by anyone while also recognizing that perhaps she might not be giving Ted enough credit.
The marriage worries Joan because it gets at one of her biggest fears: that someone might use or take advantage of Ted without caring for him in return. She acknowledges that she thinks that Kate really does make Ted happy but she worries that Kate’s needs as a result of her disability will come to dominate their lives. Kate frequently comes over to Joan’s house and asks to speak with Joan and Ted’s mom for guidance which bothers Joan because she worries already about her mom’s stress level and also feels protective of her mother’s emotional well-being.
These feelings are challenging for Joan to grapple with because she feels unable to share her true feelings with her older brother. When I asked her about whether she would consider bringing up her concerns to him, she responded that, “I don’t think it’s possible - I don’t feel like that’s specific to the fact that she has disabilities - even if he were typical - if your older brother marries someone you don’t like - you can’t really say anything about it.” What’s different in Joan’s case is that she’s grappling with how the marriage to Kate will impact her in terms of caretaking responsibilities. Joan spoke about how growing up, her parents always made it clear that she would have a role in checking in with Ted to make sure everything was okay. What shifted now is that Joan worries about her desire and ability to take care of not just Ted but also Kate.
I would be remiss if I didn’t mention how guilty Joan feels for these complex feelings. She, like many sibs, struggles to know what aspects of her brother and his wife’s needs stem from their disabilities versus their personalities. She repeatedly reminds herself that Kate can’t help the fact that she has these social and emotional challenges.
Joan’s story left me thinking. I’ve had the experience of people assuming that I would be more tolerant of individuals with disabilities almost automatically because of my brother and yet I’ve never felt particularly positively about my ableist biases. Joan seems similarly thrown by the range of emotions she’s feeling right now. At one point in our interview, she described how, “I would like to think that I would say that you have to treat people with disabilities the way you treat anyone else… but also this is my life.” Joan hopes to be a lawyer who defends individuals with disabilities and has shown time and time again her dedication to inclusion and disability rights… which makes it all the more challenging for her to process the feelings she’s going through now. I don’t have easy answers for Joan, or any other sibs that are experiencing a similar confluence of emotions. All I can do is applaud Joan’s honesty and willingness to reflect on her experience and be there for her as she continues on her journey.