A Family Affair: The Siblings of Specialized Housing
Sheila and her sisters
By Shabbi Sharifi
A sibling is your first friend. Your first enemy. Your first champion. Your first relationship requiring boundaries and critical thinking. In many families, each individual often settles comfortably into their own respective role over time. In my family, my sibling’s role is the rock, the stability that keeps our family grounded and moving with intention. This can be a laborious role, being the glue that keeps sometimes misshapen parts together. But it often comes with a sense of pride, of accomplishment, of the silent celebration that comes with each problem solved or conflict avoided.
I recently had the opportunity to sit down to talk with three women in the Specialized Housing community who have developmentally disabled siblings and, through different pathways, eventually came to this “rock” role and reinvented it to fit their specific, unique family dynamics. Although their relationships and proximity to this role varies, the women all used the same word to describe what they eventually began to understand as their inevitable end role: “caregiver.”
In addition to being sisters, friends, and confidants, these three women have taken on the responsibility of being their siblings' caregivers as they enter the next season of life—and they wouldn’t have it any other way.
Maura and Sheila
Maura’s Story
Maura adjusts her glasses as she thinks about her relationship with her sister, Sheila, a long-time Specialized Housing house member.
“Sheila is the oldest … she was not going to stand for anybody taking care of her.”
Maura is the second in a trio of sisters and was thrust into the role of caregiver suddenly when their mother passed away. She explains that her parents never put her in a parental role and instead wanted her and her sister Jen to pursue their own lives while their mother prepared for Sheila’s life, keeping the sisters in the loop about major decisions. Maura was prepared for her role as Sheila’s sister to shift; she knew this would happen eventually.
But when it did actually happen, she found herself in a position where she had to get up to speed rather quickly, juggling small kids, a pregnancy, and her new role as Sheila’s caregiver. She doesn’t linger on this thought, instead choosing to explore how hard it was for Sheila to adjust to their mother being gone and having to compete with her sister's small children for attention in her own space.
Laughing, she tells me that when choosing a partner, the first thing that came to her mind was “would they pass the sibling test” upon meeting Sheila, and how she had to navigate some surprisingly awkward moments with potential partners.
“My identity as a sister has been strongly shaped by this really interesting and kind of complicated dynamic. I was functionally the oldest in some ways, but couldn’t really claim that space because that was Sheila’s. Once you get to be in your 20s, it doesn’t matter who’s the oldest anymore. You’re just siblings. And so at some point, probably in our 20s, we did settle into this grown-up sibling sister relationship that was really nice. We had a stretch of about 10 years when that’s what we were. And we didn’t have to be caregivers. And it’s not that it’s not a rewarding role, it’s just that I think the grown-up sisters together thing just felt like an important stage for all of us to be at together.”
With pride, she also talks to me about how her relationship to Sheila has impacted her professional work. Maura is an English professor and focuses much of her work on the Renaissance era. Currently, she is researching the early history of intellectual disability, examining the different language and standards of behavior that communicated intellectual disability. She also teaches classes on intellectual disabilities.
Ultimately, she concluded that being Sheila’s sister has made her who she is, in ways that are noticeable and in ways that she is still discovering.
“There have been times, to be very honest, that I look at my friends who don’t have [developmentally disabled] siblings and I think ‘wow, how easy your life must be, you don’t have to do this,’ but the thing is, I really think everyone, sooner or later, will be in a position that they have to help a parent or help a spouse. Disability is our future. We all go there. We just don’t like to talk about it. We don’t like to think about it. But it's just part of the human condition.”
Richie and Jodi
Jodi’s Story
The moment of accepting a caregiving role came earlier for Jodi, sister to Richie. Jodi knew from a young age that she would be responsible for Richie someday. In fact, she began this role by babysitting for her brother when they were kids, despite being three years younger.
“At some point, my parents are going to die, right? And in all likelihood they’ll probably go before he and I will, and I’m his primary caregiver. So there’s a responsibility there, not only emotionally and all that, but financially, as well, that comes with having a sibling with intellectual disabilities. I’m going to be taking care of him my whole life. That’s a reality I’ve known since I was 10 years old. You grow up quick,” she says matter of factly.
She mentions to me that, undoubtedly, as the aging process happens, the next natural step is that siblings will take over the responsibilities that parents once had. She goes on to explain that growing up in this role has shaped her sense of responsibility, breaking out into a proud smile and lovingly but firmly stating a truth that she has known all her life: “He’s mine.”
“He’s my sibling but I do feel like I’m his protector. I’ve always had that role.”
When Richie and their parents moved to Massachusetts, where Jodi lives, it became clear that seeing him more often would positively impact their relationship. She speaks to me about how Richie looks to her more often and listens to her more, coming to her with advice on problems and issues, as opposed to going to their parents.
Her eyes light up as she recalls when Richie first moved to his new Specialized Housing home and she tasked him with learning his way around his new town and community. By the end of the summer, he had learned his way around Boston, and in time learned the bus routes to get himself around the city. Without pause, Jodi insists that helping Rich learn something and then witnessing him do it is the most rewarding and positive feeling she could ever have, even though she knows that he can do it and will always rise to the occasion.
She also talks to me about how as a sibling in a protector role, there’s always a deep-seated fear in the back of her mind that someone may take advantage of her sibling with intellectual disabilities. All she can do, she tells me, is teach him to be safe and hope that the “goodness in human nature comes out.”
Jodi’s thoughts around her future in this sibling and caretaker role includes the possibility of her role changing over time. However, she mentions that regardless of what happens, her role will always include being near Richie, and being available for whatever he needs.
“That [future as Richie’s caregiver] is a big piece. My husband and I talk about where we would retire, what we would do. We always need to have some home or place up in Massachusetts because my brother is going to be here… who knows what’s going to happen? I do know that wherever I live, I feel like I need to be within striking distance of where my brother is. And maybe that will change over the course of time… but it’s always been my role. It is the way it is.”
Michael and Jackie
Jackie’s Story
Lastly, I spoke with Jackie, sibling to Michael. Jackie describes that as she’s gotten older, she’s felt the urge to want to take on a bigger role in caring for Michael. She recounts that it was around her time in college that the shift from sister to caregiver began to happen for her. She began to realize that this was the natural next step in her life as a sibling.
Because of their school system, Jackie grew up meeting her brother’s friends and therefore has seen a lot of different family dynamics within families that have a disabled family member. She says that in spite of this fact, she wasn’t fully aware of the differences between her and her brother until she got a bit older. She mentions that her parents always did a good job of equally distributing attention and not making the other kids feel left out, despite Michael getting more care and services.
When asked about how being Michael’s sibling has affected her identity, Jackie doesn’t hesitate to say that it has made her a more empathetic person, more patient, and less judgmental. She mentions that because of Michael, she did a college internship at a summer camp for disabled adults (coincidentally, where she met her boyfriend) and she now works for Specialized Housing as a program manager.
Jackie confidently asserts that she doesn’t believe that being Michael’s caregiver will be a twenty-four hour job and that she still intends on living her own life. She appreciates that they have a very loving relationship and admires him for many things, especially his perseverance.
“I think it [being sole guardian] will be a challenge. But because my parents prepared for this, it’s set up to be easier for me… I don’t think I’ll have to worry about him financially. I think probably my biggest role is going to be making health decisions for him. But I feel comfortable doing this in the future and that’s probably all due to the fact that my parents really prepared for this.”
While reflecting on my conversations with these three women, one of the things that stood out to me the most was that each of the siblings described the opportunities they have had (or haven’t had) to connect with other siblings of developmentally disabled people, and just how important these relationships can be. Maura mentions that it is very important to her to have people who can relate to some of her feelings as a sibling, and that it allows her to zoom out, let go of her expectations of herself and to give her a new perspective. Similarly, Jackie explains that she meets lots of siblings of developmentally disabled people through her work at Specialized Housing, and from growing up around friends of her brother’s and their families. She says that she is grateful to know other siblings her age and values the advice and support she gets from these people.
We’d like to thank these three wonderful women for taking the time to share their perspectives and shed some light on the unique and very special relationships they share with their siblings. We’re very lucky to have them — and their siblings — in our community.