Conference Notes: Sibling Groups
Shannon Hill, Ph.D

In early May, I attended the annual conference of The National Institute for People with Disabilities, commonly known as YAI (the organization was formerly known as the Young Adults Institute and the acronym is so well-known they retained it). YAI meets every year in New York City, and for years I have wanted to go. Their agendas are chocked-full of intriguing presentations of the practical nature I so appreciate. The schedule presented some dilemmas for me, though, because there were lots of time slots in which I wished I could be in two places at once. There were presentations on therapy methods, family concerns, and innovative practices, all scheduled at once. This year, there was a substantial focus on sibling relationships. I attended one of the sessions, which included a panel of adults with intellectual disabilities and their siblings discussing their experiences through life together. I missed an earlier session, entitled, Happily Ever After? How Having Siblings with Developmental Disabilities Has Impacted Our Choices in Love, Marriage, and Starting Families, but one of the panelists from that session was nice enough to fill me in on what I missed.

These two sessions interested me in large part because of our research project, Factors Affecting Residential Service Selection. We have not completed the data collection for the project yet, but we have conducted many of the interviews and so far my impression is this: every part of every family member's life is affected when one member of the family has a significant disability. In our project, we have heard about siblings who are actively engaged (some are the primary responsible party), siblings who remain on the periphery, and siblings who were thrust into active engagement following the deaths of their parents. I could write a book on the differential experiences of those three groups, but for now I'll keep it about the conference session. The panelists were people who were actively engaged. None had the responsibility of being a primary caretaker at this point, but all maintained an active and meaningful role in the life of their sibling with a disability.

To say that family dynamics are complicated is a drastic understatement. Bilateral love, care, and respect were clearly demonstrated by all of the panelists. But how does an intellectual disability change the "normal" sibling relationship? I so enjoyed watching the sibling pairs relate to one another. After 17 years working in this field, I have become so accustomed to seeing the people I serve take a subordinate role to any other adult in the room. That happened with some of the panelists, but not all of them. Some were quick to point out when their sibling's memory was out of line with the facts, and others were successful in keeping the conversation focused on something that was important to them, although the sibling might not want to talk about it. Some of the nondisabled siblings admitted to being surprised to hear some of the hopes and dreams their brother or sister shared.

The panelists spoke in a straightforward, honest manner. Sometimes their honesty was startling. One woman, who was obviously very close to her brother, patted him on the back and said that she loved him now but there were days when she hated him. My initial response was to feel tense. But then, as she described her reasons, I realized she was not saying anything new. Siblings fight. They argue. They tire of one another. In a weird way, she was respecting him by not sparing him that comment. And he took it as it was intended. He did not fire back at her much, but he was able to describe how she had behaved as a teenager, and it was clear he knew her behavior back then was her problem, not his.

With both siblings together in the room, some pretty tough topics were discussed. This ranged from people with intellectual disabilities noticing their younger siblings surpassing them, siblings resenting having caretaker duties in the teen years, normal sibling rivalries, roles evolving in adulthood, and future planning issues. What happens when they disagree about what is best? What if we live far apart? What if I don't wantto live with you? Etc. Etc. Many obstacles were discussed, but one never got the feeling they were insurmountable. One did get the feeling some solutions would be deferred to another day, though.

The siblings who formed these panels are part of a sibling support group. The group meets together and discusses some of the hard realities of being a sibling. Apparently these topics were reserved more for the other session, which was about the lives of the siblings. I will say, I've heard stories very different from the ones described here. This was a limited group, drawn together because of similar experiences. These stories were of personal sacrifice, both growing up and in the adult years. Many factors appear to affect the degree of personal sacrifice, such as age differences, size of the family, degree of disability/disability complications, and parental belief systems.

So, how has having a sibling with a developmental disability affected these panelists' lives? I guess there are two sides to every coin, so I'll present both sides:

1. Increased Sensitivity vs. Willingness to Fight. Everyone has a story of discrimination. The siblings in general feel that they are less judgmental of others and more sensitive to the needs of others. On the other hand, they learned to stand up for their siblings and this is often extended to other socially vulnerable groups.

2. Less Narcissistic vs. Fear of Shining. I've got to admit, "fear of shining" is not my phrase. One of the panelists used it and it captured my imagination. This person came from a large family in which the siblings were bright, beautiful, and talented. There was a conscientious effort in the family to ensure the sister with an intellectual disability was never overlooked, and that her daily accomplishments were celebrated on the same level as everyone else's. Yet over time this practice evolved into an unspoken agreement that no one would call attention to anything they'd done that would outshine her. As a result, as they grew to adulthood, they found they were all experts on their sister but knew precious little about each other.

3. Sense of Responsibility vs. Living a Circumscribed Life. All of the panelists have thought about the fact that their sibling with a disability will most likely outlive their parents. Prior to that happening, their parents may become disabled themselves or simply not strong enough to continue to provide the level of care their brother or sister needs. So, many of them describe living a life that would enable them the flexibility of taking on a larger role if necessary. Some have made a career of social services or special education. Some have been hesistant to become involved in romantic relationships with people they don't think could handle such a role. Some have passed up work or educational opportunities because they were outside a mental geographic comfort zone. Some have even thought twice about having children. They have become thoughtful, reflective, go-to people; wonderful people who can't help wondering what they've missed sometimes.

As I said, this group of siblings may not be representative of the whole sibling experience; but their stories certainly gave me much to think about. My mind keeps returning to developmental psychology classes, in which we learn that one experience triggers another and another, interacting with our genetic predispositions to think or act in certain ways. The siblings' lives were profoundly affected by having a family member with a developmental disability. Would they have become sensitive, humble, responsible, circumscribed, other-oriented white knights anyway? We'll never know.