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Disabilities, Aging and Sibling support: Tending a precious resource

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Thursday, August 18, 2011

Bonnie Lashewicz, University of Calgary
Guest contributor

This entry is part of a collaborative series on disabilities between the Federation’s Equity Issues Portfolio and the Canadian Disability Studies Association/ Association Canadienne des Études sur l’Incapacité

People with disabilities, like Canadians in general, are living increasingly long lives. This sub-set of our aging population has specialized needs given that when the effects of age are superimposed on pre-existing disability, age related physical changes are more likely to occur and to occur earlier and with greater intensity. Although the arbitrariness of numbers is open to debate, people with pre-existing disabilities are often considered to be in their “senior” years by the age of fifty rather than the more conventional age sixty-five. Further, older adults with disabilities are at relatively high risk for poor health outcomes as they often lack sufficient access to positive determinants of health such as economic security and social inclusion.

Risk for poor health outcomes is heightened as these adults with disabilities are more and more likely to outlive the caregiving capacity of their aging parents and are unlikely to have spouses and children to turn to for support. Siblings are increasingly looked to as the next wave of support for older adults whose parents need to focus on their own age-associated needs or are no longer living. In the family and disability research community, siblings have been called vice presidents of families who inherit responsibilities traditionally held by parents.

 

At the same time, siblings lack obvious ties of obligation associated with parental relationships.  Adult sibling ties usually flow from a long history of intense and intimate experience of the sort which people leverage when support is needed. Yet there is a voluntary character to the adult sibling relationship predicated on the simple truth that adults can choose to be involved with each other depending on how well they get along and how well a relationship fits with one’s overall lifestyle.

Diverse family forms yield an array of variables impacting sibling ties including whether siblings are biological, half, step, foster and adopted as well as the size, gender, birth order and age spacing of the sibling group. Given this wide variation, family scholars, policy makers and practitioners have been wisely cautious in not assuming sibling support for people aging with disabilities will be automatically forthcoming. Yet this caution contributes to a deficit in understandings of the nature of sibling support in the later years and correspondingly underdeveloped resources for promoting and sustaining sibling support.

What is known about sibling support potential? When family researchers shift their focus away from parent-child relationships to encompass siblings, much of the effort is concentrated on childhood relationships between brothers and sisters. A modest but emerging body of work is being centered on adult sibling ties when one has a disability. This work, which tends to be organized according to particular disabilities, illustrates considerable sibling support potential.

Siblings of older adults with disabilities express a sense of commitment to their brothers and sisters and may even describe their experiences in terms similar to those used in by parent caregivers. Siblings frequently report worrying about the future for their brother or sister and have been found to increase their support when their parents are no longer available. Siblings have been discussed as “pivotal” given their potential to support brothers and sisters with disabilities and aging parents as both generations make care receiving/caregiving transitions. As parents grow older, siblings may assume more or new roles in navigating access to care and services in the formal system for their brothers and sisters.

Research perspectives have been elaborated by autobiographical accounts of being a sibling of someone with a disability – for examples, Paul Karasik and Judy Karasik’s The Ride Together: A Brother and Sister’s Memoir of Autism in the Family; Jeanne Safer’s The Normal One: Life with a Difficult or Damaged Sibling; Rachael Simon’s Riding the Bus with My Sister; and Kate Strohm’s Siblings).  Such accounts offer vivid illustrations of early life experiences of relatively high levels of responsibility within the family combined with relatively less parental attention.

Being a sibling is characterized by complex combinations of emotion including grief, shame, guilt, pride and loyalty in the face of the intense and often unpredictable needs of their brothers and sisters with disabilities. Sibling experiences are mixed yet sibling insights into the history and needs of brothers and sisters with disabilities run deep and offer strong potential for adding continuity and security to the brother or sister’s adult/aging years. Clearly people who write books about their brothers and sisters who have disabilities, and even people who take part in sibling research studies, cannot be taken as representative of sibling capacity for support. At the same time, these sibling voices represent part of a range of what is possible in support potential.

The complex and not always predictable nature of sibling ties invites and perhaps compels us to re-think families as critical reserves of support yet ones that cannot be taken for granted. Siblings may be an even more precious resource in the years to come as their numbers shrink consistent with continued trends to smaller family sizes. As researchers, policy makers and practitioners, we face an imperative to tend carefully to sibling relationships, in their many shapes and forms,  as potent potential support to people aging with disabilities.

Dr. Bonnie Lashewicz is an assistant professor in Community Rehabilitation and Disability Studies, Department of Community Health Sciences, Faculty of Medicine at the University of Calgary.

Category

Equity Matters

Tags

Ableism and disability

Comments

Dear Ms. Lashewicz,

Thank you for the kind words about "The Ride Together". It has amazed us to see the life of our book continue over the years. Best of all is when we hear from siblings who found the book useful in their lives.

In addition to being a cartoonist, I am a teacher and have spoken and given workshops on the book over the years. Perhaps the University of Calgary would like to have me visit?

Again, thanks!

Best wishes,
-Paul