For Parents and Families

 Overcoming Stigma: Empowering Parents of Children with Disabilities

The journey of raising a child with a disability can be both rewarding and challenging for parents. One significant obstacle they often face is the societal stigma associated with disabilities. To overcome this stigma, parents must first educate themselves about their child's condition and foster a supportive environment within their family. Knowledge empowers parents to advocate for their child effectively, challenge misconceptions, and cultivate a sense of acceptance both at home and in the broader community. By becoming well-informed, parents can engage in open conversations, helping dispel myths and promoting a more inclusive society.

Disability stigma in society is deeply rooted in a complex interplay of historical, cultural, and psychological factors. Historically, societies have often viewed disability through a lens of ignorance and fear, perpetuating harmful stereotypes and misconceptions. The lack of understanding about various disabilities has contributed to the marginalization of individuals with disabilities, fostering an environment where they are often perceived as different or as a burden. This historical context has led to the development of ingrained attitudes that are challenging to dispel, hindering progress towards a more inclusive and accepting society.

Cultural norms and societal expectations also play a significant role in perpetuating disability stigma. Many cultures prioritize ideals of physical and mental perfection, creating an environment that marginalizes those who do not conform to these standards. This emphasis on "normalcy" can lead to the exclusion of individuals with disabilities from various aspects of life, including education, employment, and social interactions. Media portrayal further amplifies these stereotypes, often depicting individuals with disabilities in limited and stereotypical roles, reinforcing societal biases and contributing to the perpetuation of stigma.

Psychologically, the fear of the unknown and the discomfort with difference contribute to the stigmatization of disability. Individuals may feel uneasy or threatened when confronted with conditions they do not understand, leading to avoidance, pity, or condescension. This discomfort often translates into discriminatory behaviors, creating barriers for individuals with disabilities in accessing equal opportunities and full participation in society. Overcoming disability stigma requires a collective effort to challenge and change these deep-seated beliefs, fostering a more inclusive mindset that recognizes the inherent value and potential of every individual, regardless of their abilities.

To help their child feel less stigmatized and marginalized, parents play a pivotal role in fostering a positive self-image. Encouraging open communication about the disability, emphasizing strengths and abilities, and celebrating achievements, no matter how small, contribute to building a resilient mindset in the child. Additionally, parents can collaborate with educators, therapists, and healthcare professionals to create an inclusive learning environment that recognizes and accommodates the child's unique needs. By instilling a sense of pride and self-worth in their child, parents can empower them to navigate the world with confidence, challenging societal prejudices and paving the way for a more inclusive and compassionate future

Collaboration between schools and families is paramount in creating an inclusive and supportive environment for children with disabilities. Schools play a crucial role in fostering an atmosphere that not only accommodates diverse needs but also actively works to reduce stigma associated with disabilities. Educators and administrators should engage in ongoing training to develop a deeper understanding of various disabilities and implement inclusive teaching strategies. By creating an environment that celebrates diversity and recognizes the unique strengths of each student, schools can contribute to a culture where differences are embraced rather than stigmatized. Open communication between educators and parents is key, ensuring that families are actively involved in the educational process and that their insights are valued in shaping a supportive learning environment for their child.

Family involvement is equally essential in empowering children with disabilities to become self-advocates. When families and schools collaborate, they can collectively develop strategies to enhance a child's self-esteem, confidence, and ability to express their needs. Parents can share valuable insights into their child's strengths, challenges, and individual learning styles, contributing to the creation of personalized education plans. Additionally, schools can organize workshops and support groups that facilitate communication between families, allowing them to share experiences, resources, and effective advocacy strategies. By working hand in hand, schools and families can break down societal stigmas surrounding disabilities, providing children with the tools they need to advocate for themselves and navigate the world with confidence.

Creating a strong support network is another crucial step in overcoming the stigma surrounding disabilities. Connecting with other parents who share similar experiences provides emotional support and practical advice. Parent support groups, both online and offline, offer a platform for sharing stories, strategies, and coping mechanisms. Through these networks, parents can gain insights into various aspects of raising a child with a disability, such as navigating the educational system, accessing healthcare services, and advocating for their child's rights. By forming alliances with others who understand the challenges, parents can collectively work towards dismantling societal stereotypes and promoting a more inclusive and understanding community. There are many organizations and affiliation available to families with members with disabilities. They can vary by state but here is a list of national organizations that can support families. 

Autism Speaks

1 East 33rd Street

4th Floor

New York, New York 10016

Toll-Free: (888) 288-4762

Email: familyservices@autismspeaks.org

https://www.autismspeaks.org/

Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of people with autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.

Children and Adults with Attention Deficit/Hyperactivity Disorder

4221 Forbes Blvd

Suite 270

Lanham, Maryland 20706

Phone: (301) 306-7070

Toll-Free: (800) 233-4050

Fax: (301) 306-7090

http://www.chadd.org/

Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD) is a national, non-profit, organization providing education, advocacy and support for individuals with ADHD. In addition, CHADD also publishes a variety of printed materials to keep members and professionals current on research advances, medications and treatments affecting individuals with ADHD.

Hands and Voices

PO Box 3093

Boulder, Colorado 80307

Phone: (303) 492-6283

Toll-Free: (866) 422-0422

Email: parentadvocate@handsandvoices.org

http://www.handsandvoices.org/index.htm 

Hands & Voices is a nationwide organization dedicated to supporting families and their children who are deaf or hard of hearing, as well as the professionals who serve them.

National Center for Learning Disabilities

1220 L Street, NW Ste. 100 Box #168

Washington, DC 20005

Phone: (301) 966-2234

Email:

https://www.ncld.org/

NCLD  works to improve the lives of individuals with learning disabilities and attention issues by empowering parents and young adults, transforming schools, and advocating for equal rights and opportunities.

PACER Center, Inc.

8161 Normandale Boulevard

Bloomington, Minnesota 55437

Phone: (952) 838-9000

Toll-Free: (800) 537-2237

Fax: (952) 838-0199

http://www.pacer.org/

PACER Center, Inc. provides information, training, and assistance to parents of children and young adults with all disabilities; physical, learning, cognitive, emotional, and health. Its mission is to improve and expand opportunities that enhance the quality of life for children and youth with disabilities and their families.

Parent to Parent

https://www.p2pusa.org/

https://www.p2pusa.org/contacts/

Parent to Parent supports a national network of programs to ensure access to quality emotional support for families of individuals with disabilities and/or special health care needs.

The Arc

1825 K Street NW

Suite 1200

Washington, District of Columbia 20006

Phone: (202) 534-3700

Toll-Free: (800) 433-5255

Fax: (202) 534-3731

Email: info@thearc.org

http://www.thearc.org

The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

United Cerebral Palsy 

8401 O Courthouse Rd. 

Vienna, Virginia 22182

Phone: 866-827-1692

Email: informationreferral@ucp.org 

https://ucp.org/

UCP is committed to change and progress for adults and children with disabilities, whether it is a disability evidenced from birth, the result of an accident, or as a consequence of aging. They provide services and support on a community-by-community basis, serving the unique needs of people with disabilities in their region. They serve people that have disabilities other than cerebral palsy, including Down Syndrome, Autism Spectrum Disorder, Physical Disabilities and Traumatic Brain Injury (TBI)

References:

Chomba, W.M., (2012) Past and Present Perceptions Toward Disability: A Historical Perspective. Disabilities Studies Quarterly. 32(2)

Gershon, L. (2020, October 9). The Rise of Disability Stigma. JStor Daily. https://daily.jstor.org/the-rise-of-disability-stigma/

Kalambouka, A., Farrell, P., Dyson, A., Kaplan, I (2007). The impact of placing pupils with special educational needs in mainstream schools on the achievement of their peers. Educational Research, V 49, 365-382

Marini, I, Graf, N.M., & Millington, M. J. (2017) Psychosocial Aspects of Disability, 2nd Edition, Insider Perspectives and Strategies for Counselors, Chapter 1: The History of Treatment Toward People With Disabilities. 

McDougall, J., Evans, J., & Baldwin, P. (2010). The Importance of Self-Determination to Perceived Quality of Life for Youth and Young Adults With Chronic Conditions and Disabilities. Remedial and Special Education, 31(4), 252–260. https://doi.org/10.1177/0741932509355989 

Shogren, K. A., Wehmeyer, M. L., Palmer, S. B., Rifenbark, G. G., & Little, T. D. (2015). Relationships Between Self-Determination and Postschool Outcomes for Youth With Disabilities. The Journal of Special Education, 48(4), 256–267. https://doi.org/10.1177/0022466913489733

Wehmeyer, M. L. (2014). Self-Determination: A Family Affair. Family Relations, 63(1), 178–184. http://www.jstor.org/stable/43695339 

Wehmeyer, M. & Schwartz, M (1997). Self-Determination and Positive Adult Outcomes: A Follow- Up Study of Youth with Mental Retardation or Learning Disabilities. Exceptional Children, 63(2), 245-255.