Social Isolation and Cerebral Palsy

Movements towards universal education and inclusion

Educators and families have a growing interest in including children with disabilities, and children without disabilities, in the same public school classroom. This is called inclusive education.  This type of classroom keeps people with disabilities in the mainstream, in the ordinary social atmosphere of the school.  Several laws like the American for Disabilities Act have promoted better access to schools, jobs, and other public places for people with disabilities.  But despite these national efforts to encourage inclusion, changes in attitudes and behavior can take time.  Many people with disabilities are still socially isolated.

A recent example of inclusive education appeared in the New York Times Magazine in Oct 2004.  It told the story of Richard Ellenson helping to design an inclusive kindergarten classroom for his son Thomas, who has disabling cerebral palsy.  This father wanted Thomas to have every opportunity to socialize and participate with his classmates who are not disabled.  Wide aisles were created so that Thomas’ wheelchair could go to all the spaces in the classroom where other children go. The article shows a successful environment for a mainstream class that included several children with disabilities.  But the article also shows that these kinds of classrooms are rare, and take extra effort and expense.

Meaning of social isolation

Researchers who study loneliness distinguish between emotional and social loneliness.  Emotional loneliness results from not having a close, intimate relationship. Social loneliness results from not having a social network of relationships. People are socially isolated when they have only a few or no informal connections with people outside their immediate family (like friends or neighbors).

 Are people with cerebral palsy socially isolated? 

There is very little research to tell us about social isolation and cerebral palsy. The studies described below all examined a young group of people with cerebral palsy, and had some interesting findings. 

1. Friendship and CP:  This 1998 study compared two groups of children (aged 9-10 years) attending regular school. One group of 55 children had hemiplegia (cerebral palsy that mostly affects just the left or right side of the body).  They were matched to 55 children who were similar to them but did not have hemiplegia. The researchers found that children with hemiplegia were more often rejected, less likely to be chosen, had fewer friendships and were more often victimized (1)

2. Bullying and CP:  Two studies from 1990 and 1996 show that a child who is physically different might become a target for victimization.  Often these children experience distress during social interactions (2004).  

3. Managing stress:  Children with cerebral palsy clearly have problems making and sustaining friendships, and can have a hard time from some other children. The positive aspects of friendship (e.g. playing and sharing time and activities) can act as a cushion against the stress which can result from a range of pressures (1993). But with fewer friends, this “cushioning” happens less often for children with cerebral palsy.   

4.  Getting together with friends:  This 1991 study included 102 teenagers with spinal bifida or cerebral palsy. The researchers reported that 83% of these teens considered friendships as important.  But few of them actually had friends outside of school, and they did not participate in active events and organized social activities. 

5.  Advantages of school:  A 2003 study compared young adults with cerebral palsy who left school with those who stayed in school.   The leavers had less access to specialists and were much more socially isolated than their classmates who remained in school.

6.  What makes socializing difficult?  These researchers asked questions about social barriers for 119 teens aged 15-19 with spinal bifida or cerebral palsy. They found that extreme social isolation was linked to dependency on others, restricted choices, physical barriers, and negative reactions from other people (1989). 

What is it like for those old enough to become part of the workforce?

Research in the Netherlands showed positive aspects in the lives of 80 people between 21-31 years of age with cerebral palsy. A majority of these young adults were independent in daily living activities, mobility and communication. However, most of them did not participate in paid employment and sports activities (2001).

 Stigma (shame) is part of the lives of some people with a disability or health impairment, but it was not found equally in all types of disabilities. Researchers asked 643 college students questions about accommodating coworkers with AIDS, cerebral palsy or stroke. This research showed people with cerebral palsy, a less stigmatizing disability, received more social acceptance than people with AIDS.   However, job performance was also important for acceptance in all three disabilities studied (2004).   

 Supporting fulfilling lives

These studies strongly suggest that the social situations of people with cerebral palsy need more attention and strong support.  The wider community (especially health care workers, teachers, and parents) needs to become more aware and take responsibility for helping with the social, as well as the physical challenges, of cerebral palsy.  Greater opportunities for social connections and jobs are needed to decrease social isolation for people with cerebral palsy.  And more research on social isolation and cerebral palsy needs to be conducted in the United States, as much of the research in this report came from studies in Europe where social life may be different from the US. 

 References

 Belkin, L. The lessons of classroom 506. New York Times Magazine. September 12, 2004.

Blum, R.W., Resnick, M.D., Nelson, R., & St. Germaine, A. (1991).  Family and peer issues among adolescents with spina bifida and cerebral palsy. Pediatrics. 88(2), 280-286.

Dawkins, , J.L. (1996). Bullying, physical disability and the pediatric patient.  Developmental Medicine and Child Neurology, 38, 603-612.

Hirst, M. (1989). Patterns of impairment and disability related to social handicap in young people with cerebral palsy and spina bifida. Journal of Biosocial Science. 21(1), 1-12.

Ng, S.Y., Dinesh, S.K., Tay, S.K., & Lee, E.H. (2003). Decreased access to health careand social isolation among young adults with cerebral palsy after leaving school [Electronic version]. Journal of Orthopaedic Surgery, 11(1), 80-89.

Parker, J.G., & Asher, S.R. (1993). Friendship and friendship quality in middle childhood:  Links with peer group acceptance and feelings of loneliness and social dissatisfaction.  Development Psychology, 29, 611-621.

Phemister, A.A., & Crewe, N.M. (2004). Objective self-awareness and stigma:  Implications for persons with visible disabilities. Journal of Rehabilitation. 70(2), 32-37.

Rubin, K.H., LeMare, L.J., & Lollis, S. (1990).  Social withdrawal in childhood.  In S.R. Asher & J.D. Coie (Eds.), Peer rejection in childhood (pp. 217-249). Cambridge:  Cambridge University Press.

Weiss, R. (1973) Loneliness:  The experience of emotional and social isolation.  Cambridge, MA:  MIT Press.

Yude, C., Goodman, R., & McConachie, H. (1998) Journal of Child Psychology and Psychiatry. 39(4) 533-541.

van der Dussen L, Nieuwstraten W, Roebroeck M, Stam HJ (Feb 2001).  Functional level of young adults with cerebral palsy.  Clin Rehabil. 15(1):84-91.

McLaughlin, M.E., Bell, M.P., & Stringer, D.Y. (2004). Stigma and acceptance of persons with disabilities: Understudied aspects of workforce diversity. Group & Organization Management. 29(3): 302-333.