Being a Sib

We often hear about what it is like for individuals with disabilities to go through life, about their struggles, challenges, barriers, successes, and resiliency. Yes, these all exist, but they may also exist for siblings and other family members of the individual with a disability. These circumstances often come in the form of emotions and feelings but can also be financial, behavioral, and physical. Sometimes siblings of individuals with disabilities will feel anger, resentment, or shame about their sib. Other times they may feel as though they need to achieve at the highest level or be perfect to make things better for their parents, to balance the scales. For example, thinking “my sibling is never going to be the athlete or achieve or make the money, so I have to.” Sometimes, the sib with a disability enriches everyone’s life and helps them to see things from another perspective or sometimes there is guilt from comparing themselves to their sib with a disability. This can manifest as inspiration (if he can do it, so can I) or shame (he cannot do this, so I should not flaunt my success). And sometimes all, some, or none of these happen.

The dynamics of families vary greatly from one to the next and it is no different when one or more of the family’s members have a disability. There is not a great deal of research or literature about the impact on siblings of individuals with disabilities. There was a book written in 1993 by Stanley Klein and Maxwell Schleifer called It Isn't Fair!: Siblings of Children with Disabilities, that is a compilation of essays and articles from two decades of work published in The Exceptional Parents magazine, that describes the multitude of feelings, thoughts, joys, and frustrations of siblings of individuals with disabilities.  Another book written by Peter Burke, Brothers and Sisters of Disabled Children (2004), discusses some of the same ideas but it goes a bit further.  This book states “disability is a family matter when one member is disabled”. From a book review by Mounir Samy (2005), Burke “introduced the original concept of ‘disability by association’ to refer to the impact of a disabled child on healthy siblings and...an exemplification of this concept in all spheres of the sibling’s school, family and social life”. Burke’s purpose in writing the book was “to explain in more detail the experiences of siblings, to show whether this experience is due to difference, disability or discrimination should it infringe against the fundamental rights of the child”.  These publications were mentioned in a few other articles that I found all of which said the same thing regarding literature and research about siblings.  There is information out there about impacts for families and about implications for the individual with a disability, but the information is limited about the implications for siblings. 

Most of the studies, articles, websites, anecdotes, and narratives provided a wide array of findings but most agreed that some individuals with siblings with disabilities had higher rates of anxiety and depression, issues with coping, increased ability to resolve and manage conflict and higher degrees of a sense of responsibility. Many of the siblings experienced these emotions mainly due to taking on caretaking roles and feeling protective of their sibling.  But notice most findings were for SOME people, so I am led to believe that SOME siblings did not feel any of these perceived negative emotions. These same actions also produced some very positive outcomes such as the non-disabled siblings developing strong empathy and compassion as well as patience and generosity. One family dynamic that was fairly consistent across all sources was that sisters of individuals with disabilities are more greatly impacted than brothers presumably because the sisters tend to take on the caregiver role more frequently, either by choice or external expectation. Birth order did not seem to matter as much as gender. Older and younger sisters took on the caregiver role while older and younger brothers were more aloof. 

Perceived attention and expectations from parents by siblings without disabilities was as widely varied as were individual emotions.  Some siblings felt resentful toward parents and their sibling with a disability because they felt their parents attended to the sib with a disability more and somewhat neglected the sib without a disability. Some nondisabled sibs also felt that their parents expected more from them and/or that they needed to achieve at higher levels in order to either gain some attention or to make up for their disabled sib’s lack of achievement. There are other circumstances that caused resentment as well such as when parents lowered expectations for the sib with a disability while the nondisabled sib thought it was likely (or flat out knew) that the sib with a disability could accomplish whatever task was in question. 

After reviewing all of this information, there is one thing I found that was pretty consistent. Most siblings, in youth, squabbled, competed for attention and affection, played together, fought together, protected each other, and acted like any other siblings.  Most siblings, as they entered adulthood, cared for, and loved one another, resented each other for various reasons, supported one another and learned from one another just like any other siblings. Yes, having a sibling with a disability definitely adds a different dimension to all family relationships.  There are additional and different emotional, financial, and medical stressors. There is the added stress of wondering what will happen to the child/sibling with a disability once the parents are no longer able to care for them. In most cases, the expectation is that a sister will step in. This is stress inducing all around. 

Being the sister of an individual with a disability, I could relate to much of what I read but not all of it. My parents definitely paid more attention to my brother, Dave, than to either me or my older brother, Ed. (Ed was the oldest, then me, then Dave—Dave is the one with a disability). They absolutely put more pressure on me to be the caregiver. They expected Ed and I to achieve more and they presumed Dave could not do many things. By the way, Dave has quadriplegic cerebral palsy and he is nonverbal. He uses an AAC device to communicate, uses a motorized wheelchair for mobility and needs total support with all daily living tasks. He is also quite brilliant and has a bachelor’s degree in computer science, works part time, and lives in a house that he owns with his wife in Texas. If you had asked my parents when Dave was younger if they ever thought he would earn a college degree, own a house, have a good job, or be married, they could never have imagined it. They believed, until he was in high school, that he would live at home with them until they died, then live with me. He would leave school and go into a sheltered workshop setting and only have friends with disabilities.  Man, did he prove them wrong!

But I digress. This is about being a sibling of a person with a disability. Did having Dave as my brother impact me? Yes, it did. As I read the available literature on the topic, I connected with just about every emotion, feeling, idea, outcome, etc., that was described. Sometimes I resented Dave and sometimes I resented my parents and sometimes I resented Ed. Sometimes I loved them, hated them, empathized, stressed, or coped. I mostly got along with Dave and still do.  We even did live together for a while but not because I felt obligated to, but because I wanted to. We had a sweet set up. We lived in a duplex. He and a roommate, Mike, (more about that later in a blog past) lived downstairs and I lived upstairs. Dave also had daily paid caregivers in and out all day, and Mike and I took turns making dinners for all of us and helping Dave to eat dinner. It was quite awesome. We lived this way for 11 years. 

Growing up, I often felt that my parent’s attention was a hot commodity. I wanted more of it, but I also understood Dave needed more than me. I felt slighted at times, but I never took it out on Dave. I more so was frustrated with my caregiver role. When I was in high school, Ed was off to begin his solo adult life, and Dave was in intermediate school. I wanted to have a typical high school experience, joining clubs, hanging out with friends after school, getting a job, but I was needed to be at home after school to meet Dave when he was dropped off from school because both my parents worked.  But rather than whine, I found a solution.  I found someone to “babysit” on some days after school so I could work or see friends, and the other days, I arranged for the school bus to drop Dave at my high school so I could join Drama Club.  Dave became a fixture at play rehearsals.  He loved it and made friends, I got to be in plays in school, and Drama Club got to be exposed to and get know someone with a disability.  This was in the 1980’s so there were not a lot of folks with disabilities mingling in the general population. 

I also knew that Dave could do so much more than parents thought he could. This was another root of some resentment.  My parents put all the household chores on Ed and I, and Dave was not expected to do anything. Of course, he loved that.  Ed was pretty removed from Dave. They were 8 years apart in age so that alone would cause a divide between sibs, but Ed was also a little afraid. Not of Dave himself but he did not know how to interact with Dave, so he was distant and never really learned how to interact, so Ed never pushed back about Dave being off the hook with household chores. But not me! When he was younger, Dave used a walker in the house, so he was kind of mobile. He could hold onto things too. So, I decided one day to teach him how to dust the furniture.  I put the Pledge-coated dust rag in his grip and showed him how to swing his arm back and forth over the furniture.  Voila! He could do chores. And he liked it! Then I showed him how to use the dust mop! My mom was not as excited as Dave and I were, though I still do not really know why. I have my guesses though (again a blog for another day). I pushed Dave and was not satisfied believing he was helpless. My parents did not always agree. There were many times they said things that let both Dave and I know that they did not think he was capable. They saw his disability first. They saw limitations. They saw challenges. They saw diminished outcomes. They saw him needing help for the rest of his life.  And yes, he would need help for the rest of his life. They focused on that part of him though, and not the potential he had, the passion, the sense of humor, the wisdom and intelligence, the resilience and perseverance.  They worried more than they hoped so I stepped in to be his cheerleader, his advocate, his sister, and his friend. 

Every sibling of an individual with a disability will have their own unique experience.  There are some similarities, and some differences.  There are different and additional stressors and factors when a sibling has a disability. I know many people who are sibs, I am a part of groups and chats and such with other sibs. Everyone complains, revels, cries, laughs. There are things that happen when you have a sib with a disability that only other sibs can understand. It is important to seek out and talk to other sibs. Not everyone will be a good support or confidante, but that is true of all relationships.  There are several virtual options to connect with other sibs like Sibling Leadership Network (https://siblingleadership.org/). They have an associated Facebook group as well (https://www.facebook.com/groups/SibNet), and there are many state chapters too.   

 

Having a sibling with a disability is significant. The lack of research is not surprising. Just about every study I came across could not definitively describe the impact on siblings of individuals with disabilities. The narrative, anecdotal and qualitative works that I found described the wide variety of feelings, emotions, thoughts, interactions, issues, and relationships between siblings.  These I found so much more helpful and insightful because they did not attempt to quantify or categorize sibling impacts. The impact on siblings of individuals with disabilities cannot be compartmentalized. There are no scientific cause and effect relationships. There are so many variables in all relationships, and adding the variable of disability adds even more variables!  It is natural to feel many emotions and to have a variety of outcomes and impacts when you have a sibling with a disability. It is also important to know you are not alone.