Even today, moms and dads of kids with disabilities are sometimes counseled that a child's disability will make life harder for the other children in the family. We are seldom told how they will love each other or learn from each other. “He is heavy, and he's my brother,” my sons would say. Disability is real, and so is love. Lifting weights makes you stronger; transferring your brother makes you stronger. Caring for your brother makes you stronger, too. The heart is a muscle.
It is commonplace for moms and dads to worry: Do I love each of my children equally? Do I do enough for each of them? If I do so much for my child with a disability is there enough left over for my other children? When our children are very different from each other, this worry is sometimes overwhelming. Even though we feel the same love for each of our children, we may find it very difficult to express our love equally, especially if one of our children has communication or behavior issues or intellectual disabilities. If one of our children has a need for extra care, another layer is added: Is it right to expect my children to help take care of their brother or sister? These concerns, and the assumptions we make about them, deeply affect our relationships with our sons and daughters and their relationships with each other.
In the disability field, we often talk about systems change. Usually, we use the term to describe making improvements in formal service systems. We are in the midst of achieving a new consensus that person-centered planning, self-determination, and individual budgets are more effective, moral, and just than congregate or group approaches to formal, publicly funded supports. We are working to change our systems to recognize the new consensus on individual rights.
The emerging focus on individuals served by our formal service systems, however, belies the reality that families provide more life-long supports to children and adults with disabilities than does any formal service system. Most people with very significant disabilities are never emancipated from their families before the law as their peers without disabilities are emancipated at age 18. Even if families do not seek guardianship, responsibility is assumed. Our systems rely on an assumption that families will keep doing everything for a young adult that they did for a child and that siblings will step in later to do what parents have always done. This assumption is the source of the concept of the “waiting list” as well as of what one friend with disabilities refers to as “the indentured servitude of families.” Some people with disabilities talk eloquently about the burden they feel because they are so dependent on their families, even as children. Other people with disabilities experience this relationship differently: “I have a very controlling family,” they say. “My parents controlled my life and now my brother controls my life.” In our systems, families seldom have an option. Families provide life-long, often intimate support without pay, technical assistance, or regulation and often without information, networks, or family support; perhaps their sons and daughters do not even have access to self-advocacy training. Getting help is often brutally difficult, unless one is willing to walk away entirely. In private, families ask, “Why must we be in crisis before we can get help?” The answer is difficult to bear. A family in crisis may be more pliable and willing to accept the help systems have to give rather than asking for what they really want or need; crisis is also a credible allocation tool.
Without families' constant vigilance, love, effort, and readiness to help, whether they are in crisis or not, few of our formal systems could manage. Even when someone has support under a state Medicaid plan, families usually provide the structure, the personal support, the “back-up,” and the oversight to make the plan work. Often, they are happy to provide a home. In fact, under many emerging self-determination designs, it is families who provide all the structure and much of the support. In any case, it is almost always families—mothers, fathers, brothers, and sisters—who are there when all else fails.
Systems Change as We Know It
Our systems-change efforts are more real when they take the informal or family system and natural responsibility into account. As fervently as I hope to be able to be the backup or oversight for my son Charlie for all of his life, I know in my heart it will not turn out that way. His brothers will be with him all of his life; I will not. They grew up with him, and they will be around when he is old. He is lucky to have brothers, and they are lucky to have him.
All of my favorite pictures of my sons are of the three of them together. They learned about disability together when they were little: Now that they are grown, it is their reality. I know a woman whose sister with disabilities is in her late eighties, and she still follows every change in her sister's daily routine, plans for every holiday and family celebration, shares every worry and every joy. So systems change, if it is to be real, must also focus on brothers and sisters and their life-long love and the life-long responsibilities the American public implicitly or explicitly expects them to take.
The current trend toward individualism is laudable in that it focuses on the civil and human rights of persons who have long been denied. By focusing on individualism and individual rights, individual outcome measures, person-centered planning, individual budgets, self-determination, and self-advocacy, however, we often forget about families. What are the outcomes for families? Can we really expect a family hanging on by the skin of its teeth to respect individual rights and engender self-determination? Does society have the right to demand certain approaches from families it refuses to support? Are the dignity and rights of the person with disabilities prior to the dignity and rights of other family members? When should self-advocates be angry at their parents or siblings and when should they be angry at legislatures, and how can we know the difference? Self-determination expressed as individualism is limited when it ignores families.
Individualism also forgets about populations. When we focus only on the individual, we forget that even if we can attain terrific outcomes for an individual, the system remains responsible for what happens to everyone else who needs support but is not receiving it. The system is responsible for those it serves and for those it should serve. Similarly, when we focus on individual outcomes, we often forget to ask: At what cost are these outcomes attained? Can we do this with fewer resources? Our systems sometimes seem as if the formal system alone is responsible for the results, when often key contributions and sacrifices are made by families, and without these contributions everything would fall apart. The cost of a lack of appropriate supports sits squarely on the backs of families. The cost of operating a waiting list is borne by families who are not actually waiting at all, but living as best they can with little or no help or with the wrong help. Many have invented innovative ways of coping and thriving while they wait for supports that will achieve lesser results.
How Can Systems Support Families?
How can families' loving hard work be optimized? What would make individual and family lives better? It is good to dream. We know we need a system of life-long, individual, community- and family-based, flexible, person-centered supports that also recognize the individual rights and needs of family members without encouraging family members to walk away from their natural responsibilities to each other. We need systems that recognize that even people who only need a little bit of help have a legitimate need, and they often have a desperate need for that one small piece. We need systems that do not rely on labels to make eligibility determinations that focus on exclusion rather than inclusion. We need systems that are equitable, that provide decent supports to everyone before they provide exquisite supports to anyone. Finally, we need systems that recognize the power of love and the need for love in a person's life, whether that love comes from a parent, a sibling, or someone else.
What is Sibling Research?
Sibling researchers must focus on these systems issues because brothers and sisters take up the slack when the system does not work. Systems issues have life-long effects on siblings. Systems research is different from the limited, defined research that publicly funded grant competitions often prefer. Systems issues are by nature complex. Family issues are by nature pluralistic, sometimes messy. Scientists and philosophers (and grant makers) have, as John Dewey pointed out, a preference for theoretical security and certainty; for unity, permanence and universals, over plurality, change and particulars. Families—parents, grandparents, siblings—need researchers and funders to reexamine these preferences; to think in new ways about research agendas that will help us discover what works, and when; and for whom, from our own point of view as families. We need to discover these things in order to inform public policy.
Research that is organized to make a difference in people's lives is different from research that is designed to find applications for the discoveries of basic science. The philosopher McKeon (1998) identified four conceptions of the scientific method: dialectical, logistic, problematic, and operational. In his model, operational research is designed to identify practical issues and processes that achieve verifiable results. This is distinct from the currently dominant logistic model, which attempts to treat all subjects in mathematical terms and to look for universal or basic facts. To inform policy, we need research that is designed to measure the impact of various interventions in the lives of families so that decent but not extravagant supports can be authorized, funded, and administered. This is what it takes for researchers to inform policy decisions. This is the kind of research that is needed to support siblings in their life-long quest of a decent life for their brother or sister.
Research beginning with practical problems is not unconnected to basic science. Practical research can make fundamental contributions to basic science and knowledge of how the world works, as Stokes (1997) pointed out. Clearly, in many different streams and models of research, investigators continue to make enormous advances in our knowledge and improvements in our quality of life. It is appropriate to assign a healthy respect and commensurate funding to various approaches when they are used properly. Practical researchers should not let themselves be seen as second-class citizens, always looking for a way to be more defined and objective in their approach. Families, siblings, systems, responsibilities, and relationships are not defined and objective topics. Complexity is not best analyzed in reductionist models. We do not need the mechanisms of our chromosomes analyzed any more than we need policymakers to understand the mechanisms that cause our families to be at risk in American society if we live with disability and without support.
How Do Families Receive and Use Information?
One practical problem that needs research is the problem of how information flows into families, and how it is used by various family members. The answers to the following questions might have real impact: How can we help adult brothers and sisters make good decisions about their sibling's long-term care without simply sacrificing their own freedom? How do young siblings learn about disability, other than from their parents? How do families best learn about their own capacities? Answers to these questions would help us translate theory into programs that have real results.
Likewise, we should study the variables within families and the programs and supports that lead to good global outcomes for people with disabilities. What strengths do siblings have that might make a difference? How can we support the empowerment and resilience of people who must rely on family care because they have disabilities? What personal problem-solving skills should families have, and how can they be developed? What is the effect of real family support on all siblings (including the sibling with disabilities)? Is a supported family more likely to launch an empowered young self-advocate? What are the family strengths that lead to the development of self-advocacy? Is psychological counseling or psychoeducation a valuable tool for some?
Families have different projects, and we need to understand what those projects are. How does it affect siblings (and the person with disabilities) if families devote significant advocacy and resources to “curing” the disability? Can families thrive if they are only “getting by” or coping with disability? Is an understanding of the new paradigm in disability policy empowering for families? Are advocacy and leadership healing? Are levels of family stress different in families who are trying to cure a disability compared to those who are trying to cope or transform their communities? What is the best way to think about public responsibility to such families?
Can Other Studies Help?
The National Institutes of Health National Child Study may allow analysis of the family-system impacts of various therapeutic interventions or approaches to disability in children. It may be very difficult to measure the impacts of interventions because there are widely different levels of services and support available to families across states and communities. How would we know if we were measuring the stress of using the intervention or the stress of obtaining the intervention? Could we measure the stress of failing to obtain an intervention?
Other studies that would help inform policymakers would be demographic and psychographic studies of families. Currently, 710,000 adults with intellectual disability live at home with elderly (over 60) caregivers in the United States (Rizzolo, Hemp, Braddock, & Pomerantz-Essley, 2004, p. 57), though the number is sometimes reported to be closer to 850,000. At a bare minimum, we should know how many people with disabilities are in which age groups and where they live, with whom, and in what circumstances.
Once basic demographics are established, there are further questions about each group. For example, what are the family issues resulting from an arrangement where a son or daughter lives with elderly parent caregivers? In how many families where the family owns the home can the home be passed on to the sibling with disabilities? In how many homes is the person with disabilities providing home health care or other caregiving supports to the parents, and how does that affect sibling relationships?
What about the positive aspects of raising a son or daughter with disabilities at home? It is still commonplace for families to be told that doing so will create stress and other problems. What about the strong sense of social justice that can be seen in young siblings of children with disabilities? Isn't that a plus? How can it be encouraged? What about the fact that nondisabled siblings can see for themselves that their parents will love them no matter what?
It would be helpful to know how often adult siblings without disabilities believe that they must carry on Mom and Dad's wishes versus how often they see their parents' deaths and the passing of the torch as a chance to make a fresh start and find a new life for their sister or brother with disabilities. Do we know where this commitment—or this courage—comes from? Ultimately, the best research will flow from questions that occur to investigators when they get to know families. As we explore ways to better understand and support the relationships between brothers and sisters with and without disabilities, I hope that researchers will continue to be intrigued by questions whose answers can inform public policy as well as personal psychology.
Author: Sue Swenson, MBA, Executive Director of The Arc of the United States, 1010 Wayne Ave., Suite 650, Silver Spring, MD 20910. email@example.com