What is stigma?
Stigma is defined as a social construct that dictates whether an individual is considered “normal” within a given society. When individuals are stigmatized, they are often viewed as “other” and often even less human (Munger). Stigma has a large impact on children with disabilities and their families. It is important to consider whether or not health care professionals who work directly with children with disabilities and their families are doing enough to help stop the stigma.
Why does stigma need to end?
Families report that when they perceive they are experiencing stigma they adapt and change their daily routines and interactions. Some parents have reported not going to community outings or extended family gatherings due to the stigma they have experienced before (Zuckerman et al. 2018). They may not take their child to the park or the grocery store due to the looks and stares they get in addition to feeling as though they need to constantly explain or validate their child’s behavior. They report increased perceived rates of stress in the family, they perceive that their child is not getting enough support( despite having their child enrolled and engaged with appropriate supports and services at the same rate as families with decreased perceptions of stigma) and report overall feelings of loneliness and isolation (Kinnear et al. 2018; Zuckerman et al. 2018). These feelings and rates are further exacerbated when a family is also part of another stigmatized group due to other factors as well. Families who have public insurance, parents with lower education, immigrant families, non-English speaking families, and families of color report increased feelings of stigma (Zuckerman et al. 2018). Families also report stigma influencing the way they or others think about their child’s future and potential to go to college, work, get married, have children of their own (Kinnear et al. 2016). This stigma then follows the child as they age and can result in discrimination. The stigma occurs in the child’s and family’s daily lives.
How are parents combatting stigma?
Parents are fierce advocates for their children and are taking on the fight against stigma. Parents at times will actively try and push against stigma, but also will adapt themselves in the stigmatizing situation. Parents also show a mix in terms of how they perceive they need to combat stigma. For example, some ignore, some use medical deflection (use of treatment, therapies to combat the stigmatized trait). Other parents feel it is their role to educate their community about their child and disability to combat the stigma through more of a social model lens. Other families use a strategy of avoiding or ignoring the stigma altogether and adapt their life as to reduce experiencing any stigmatizing situations. While parents and children with disability experience the stigma firsthand and know just how negative the toll can be, they shouldn’t fight it alone. (Manago, Davis, & Goar 2017).
What is next?
There is much still to untangle with what may be the initial cause or root of stigma in addition to what the best way to end it is, however it is clear that stigma must be addressed within clinical practice in order to promote community engagement, quality of care, and familial joy. Healthcare professionals must play a role in combating the stigma, both directly and indirectly with the family and should make it a large priority of their practice. Consider reflecting on how you might help fight stigma.
Have you addressed stigma with the families you work with?
Is the language/approaches you use in practice leading to further perceive stigma in parents? Do you utilize more of a medical model approach or social model
Are you encouraging parents to utilize the social model to combat stigma? A medical model?
To passively address stigma? Actively?
Are we relying too heavily on parents to combat stigma of childhood disability?
How do you address stigma or talk about disability in your personal life?
What are we doing on a professional and personal level to help break the stigma surrounding disability?
How can we collectively do more to end stigma?
We can all do more to help in ending the stigma.
References
Kinnear, S. H., Link, B. G., Ballan, M. S., & Fischbach, R. L. (2016). Understanding the
experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families’ lives. Journal of Autism and Developmental Disorders, 46(3), 942-953.
Manago, B., Davis, J. L., & Goar, C. (2017). Discourse in action: Parents’ use of
medical and social models to resist disability stigma. Social Science & Medicine, 184, 169-177.
Munger, Kelly. “Stigma.” Disability in American Life: An Encyclopedia of Policies, Concepts,
and Controversies. Edited by Tamar Heller, Sarah Parker Harris, Carol Gill, and Robert
Gould, Santa Barbara, Ca: ABC-CLIO pp. 638-641.
Zuckerman, K. E., Lindly, O. J., Reyes, N. M., Chavez, A. E., Cobian, M., Macias, K., ...
& Smith, K. A. (2018). Parent perceptions of community autism spectrum disorder stigma: Measure validation and associations in a multi-site sample. Journal of Autism and Developmental Disorders, 48(9), 3199-3209.
