As the youngest child in our family, I grew up accepting my brother Daniel's differences as a given.
I don’t remember Daniel ever being able to walk or communicate. I don’t remember a time when he was progressing developmentally. I don’t even remember the time he almost died. For me, Daniel has just been Daniel, the way he is.
Our older brother Andrew does remember Daniel before he started to lose his skills. Andrew used to pray that Daniel would be healed. Then he’d run to Daniel’s side, only to find that nothing had changed. I don’t remember ever praying for healing.
In fact, I was so accustomed to disability as a young child that I walked into the home of some new family friends, looked around, and asked my mom “where’s the handicapped person in this family?” Disability has always been a part of my life and it has had a huge impact in forming who I am today.
Daniel has Batten disease, which is a neuro-degenerative disease. He functions like a six to nine month old. He can’t talk or walk or feed himself, and he wears diapers. We can tell if he is happy or upset but we can't discern what he wants or what would ease his discomfort.
When I was in second grade, our brother Andrew moved away and I assumed the role of the oldest child. Soon I was changing diapers and feeding Daniel through his g-tube. By high school I was taking my parents up on the offer to babysit Daniel to earn money, rather than go out with friends.
The year I entered college, Andrew and my parents became legal conservators for Daniel but I was left out of the process. The legal team suggested that the court would look unfavourably on an 18-year-old taking on this role.
Ten years later I became a legal conservator and the weight of my responsibility for Daniel was simply made official. I feel this responsibility in different ways.
For example, when I think about where I might move for my career, I think about how that will affect Daniel. When I start dating a new guy I wonder if he can ever fully understand the responsibility we will carry for the rest of Daniel’s life. I wonder if the guy carries the gene for Batten disease and if our children could have it. When we plan family vacations we'll have to think about the type of car we rent and where we're staying to make sure it can accommodate a wheelchair. It’s just part of life with Daniel.
The few times a year that I am in town, I go visit him in his group home. Most of those visits are not what I would call enjoyable. I feel obligated to go visit him, and guilty if I don’t. I feel guilty that I don’t visit more often, but after visiting I come away feeling like he probably doesn’t even care. When I walk into his home and call out his name he often turns away and ignores me as if to show his displeasure for my prolonged absence. And yet I continue to subject myself to the torture of simultaneously feeling guilty for "not doing more" and "not wanting to do more."
But even with all of these mixed emotions and uncertainty about how to be the best sister to Daniel, I wouldn’t change it.
Do I wish he could communicate with us? Absolutely! Do I wish he wasn't in pain? Of course! Can I imagine what my life would be without him? No way!
While my friends probably wouldn’t call me a patient person, I know I'm far more patient than I would be if Daniel had developed typically. I know I'm much more understanding and empathetic to those who are overlooked and misunderstood. All of these experiences led me to enter a graduate program in Sociology so that I could look at how children are affected by having a disabled sibling.
My early findings show that in the United States, girls who have a brother or sister with disability tend to get half a year less schooling than their female peers with typically developing siblings. For boys there doesn’t seem to be a difference. While these are raw statistics and do not fit any one individual perfectly, they reveal a disturbing trend.
Every time I see the disadvantage that girls with disabled siblings face, I realize how fortunate I am that I'm even in graduate school and that I have never felt like my parents expected me to care for Daniel more than our brother Andrew—just because I'm a girl.
My parents don't expect us to be responsible for him financially when they pass away. When I browse message boards for adult siblings I realize how truly fortunate I am in that respect. While there was a lot going on behind the scenes that I didn’t know about growing up, my parents did the best to give each of us the best family life possible.
My parents also pushed us to perform to the best of our abilities and not take anything for granted. While I sometimes felt the need to make up for Daniel’s deficits, that was never something I felt my parents expected of me. They wanted me to use the gifts that I had and realize that they were just that: gifts. I could just as easily not have had those gifts. They also helped me use those gifts to be a blessing to others. If my experiences, good and bad, can help other siblings out there, then it is all worth it.
With this in mind, I started looking at how siblings fare as they grow up. Although some sociologists have studied children with disabilities or their parents, we siblings have gone largely unnoticed. We recognize that a child with special needs requires additional therapies and that often takes up the family’s time and money. But how does that affect their siblings?
When I look back on my childhood, I can’t think of anything my parents could have done differently. They did not take my commitment to Daniel for granted. They did their best to make sure we were not held back by Daniel’s limitations but also made sure we were engaged in the community as a family. My parents would bring Daniel to my basketball games and I was expected to attend his field day at his special school. This was just what family did. Daniel supported us and we supported him. My parents didn’t make a big deal about it; that’s simply the way it was.
I keep a photo next to my work computer of my family from when I was three years old, right before Daniel almost died. I look at the children in that photo who have no idea what life has in store for them. Andrew and I don’t know what additional struggles we'll face because of our brother's disability. We don’t know how quickly we'll have to grow up compared to our peers.
Next to that old photo I have a recent picture of me with my brothers. In this one we are grown up. The photo captures our personalities. We are happy people. We aren’t jaded by the experiences we did or didn’t have growing up. We easily integrate the wheelchair into our pose. It is just who Daniel is, and that is what makes our family our family.
When people ask what it was like growing up with a special-needs brother I don’t always know what to tell them. It is the only life I have ever known. While I would not wish the pain of it on anyone, I also know that Daniel’s laugh is the sound of true, unbridled joy, and that all of our experiences together—good and bad, easy and hard—have made me who I am. I wouldn’t trade them for anything.
Anna Penner is in the second year of a PhD in Sociology at the University of California, Irvine.