Our Sibling Keepers

Last week’s entry and the resulting comments caused me to reflect upon the brothers and sisters of disabled people. It dawned on me that many may not know about or have considered the position our siblings are in whether they like it or not.

Our friends have on some level made a choice that we the disabled person are well worth the extra effort they must sometimes expend on our behalf. Our siblings have no choice about any of it. They are drafted and service lasts a lifetime.

When a disabled child enters a family, it requires extra time and effort from the parents who must go to doctors appointments, find time for physical therapy, deal with school systems, and generally learn how to help and care for their child. By necessity, as it was in my case, a disproportionate amount of time and effort often must be spent on the disabled child. For example, whenever I had surgery, Mom came with me and stayed at the distant hospital the entire time. This meant my grandparents stayed with my sisters. I also received gifts whenever I was hospitalized, didn’t have to do certain chores, and received extra attention.

While my older sister seemingly understood the situation, my younger sister had problems which is completely reasonable in my opinion. She took her frustration out on my mother by acting out. It was lousy for everybody, but there was no solution to the state of affairs..

Disabled kids eventually become disabled adults. While their mature siblings are better equipped to understand the situation, new and complex issues emerge. The disproportionate attention parents must give the disabled sibling might not change in adulthood. Furthermore, when the parents become too old to provide the needed assistance, it falls upon the nondisabled siblings to help.. While you might think our social welfare system would fill in the gap, the reality is that without support from friends and family, disabled people often have a lower quality of life. Anything more than simple physical existence requires the support of family of some sort. That burden could fall on the shoulders of a spouse, but we are less likely to marry. So, our brothers and sisters must take up where parents leave off.

In addition, there are financial considerations. Any disabled adult eking out an existence on Social Security and other such programs can receive certain kinds of monetary help from others as long as it does not involve food, clothing, or shelter. When our parents die, if we directly inherit something, it could well make us ineligible for those forms of support. Most parents of a disabled child set up a specific type of trust and appoint someone to administer it. Unless you want to pay for that oversight, you appoint a sibling. To add to the complexity, parents might decide to leave more to their disabled child based on the reality that we often need more financial support. All this places more responsibility on the nondisabled siblings and can foster resentment. In addition, having one sibling control the financial status of another can be an emotional minefield.

All of this has largely gone without mention by either me or my sisters. Personally, I do not want to know if they consider their future obligations to be onerous. I also do not want to shed any light on my fears that their lives and families will prevent them from giving me the help I might need. Besides, I feel immense guilt even considering asking my sisters for aid now and avoid imagining what it might be like in the distant future.

I am certain both have discussed me with their respective spouses and consideration has been given to what it might mean for their families once my parents pass on. Our society still considers the family the first line of help and support in this arena. If I happen to have a life partner, everyone will assume that person takes on primary responsibility for me freeing my sisters. However, if I’m single and my sisters want me to have more than a subsistence quality of life, they will have to take on those responsibilities.

In writing this entry, I have gained a new appreciation for the depth and extent of the burden our society places upon the siblings of a disabled person. And, should a sibling object to these obligations, social sanction is high. I grant you assuming the responsibilities does result in social kudos. After all, if my friends are nominated to sainthood for being in my company, can you imagine what some will think of my sisters? Still, I personally think our siblings are in a lousy position. I try to appreciate what mine do for me and not ask for much.

In fact, I ask more of my friends. As with many people of my generation, my friends form a different sort of family – what many call a chosen family. I turn to mine regularly for a vast array of things. While I try to do things in return, cookies can’t exactly compensate for weekly rides to yoga or being dragged for a walk by my obstinate dog.

I know I should stop thinking of myself as a burden instead embracing the notion that the people in my life are lucky to have me and what I bring to any relationship is well worth any extra effort. Haven’t managed it, though.

Oddly enough, after starting this entry, I discovered on Friday Hallmark is showing “Riding the Bus with My sister.” This movie explores the complexity of issues within a sibling relationship when one is disabled. If memory serves, they did a pretty good job of it.

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About Jen

After acquiring a degree from Vassar College in psychology, I moved to Western Mass where I ran a peer mentoring network for disabled college students as well as activism and organizing around disability issues. I also conducted research on disabled women’s body image. An Upstate New York native, I eventually followed my heliotropic nature to the sun of Southern California. I divide my time between writing (disability fiction and essays) along with moderating San Diego Bisexual Forum which is one of the oldest groups of its kind in the country. In my off hours I can often be found in my neighborhood live music venue enjoying our local talent.

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