Navigating Bias and Finding Allies

Over the years, parents of children with disabilities and special health care needs have told us many stories about dealing with bias, unfairness, racism, ableism or discrimination against their child. We’ve also heard from children themselves as they grow up. Bias is an opinion that makes things worse or better for some people more than others. It can lead to unfair actions or discrimination where someone does not get what they need or deserve because of their disability, health needs, race, skin color, religion or faith, gender, sexuality, age, language they speak, education level, region of the state they’re from or something else.

We have heard stories about things like:

• A young parent in a rural community who could not read well and had a low income was talked over and dismissed when telling teachers and doctors about concerns for her daughter’s development. Once she did get a diagnosis and help for her child, she had a very hard time getting information she could understand. Fortunately, she connected with a neighbor who also had a child with a disability and could help her understand how to get services.
• A father with a son diagnosed with an intellectual disability and severe anxiety turned to friends and loved ones for help, only to hear that their culture and religion saw mental health conditions as a weakness. Luckily, the father talked with a family friend who was from the same culture and had their own mental health condition. That friend did not believe it was a weakness and was able to brainstorm where to find help.
• A Black family with a pre-teen child who had invisible disabilities, including depression, sensory processing disorder and a traumatic brain injury, often had to step in at their son’s school. Both adults and children there were disrespectful in different ways. Some kids bullied him. His parents eventually ended up finding a Black parent group to give them tips and support to handle the bias and racism.

Inspired by painful moments, parents also regularly tell us how they deal with the hurt and worry they feel. They get stronger and develop a thicker skin so they can speak up for their child and family to get respect and help. When needed, they’ve used legal tools or advocacy.

See also our important pages on:

• Legal Rights of People With Disabilities
• If Your Child’s Rights Are Violated
• Special Education Advocacy
• Using Your Voice to Advocate and Change Systems 
• Connecting With Other Parents

A lot of the time, part of this journey includes connecting with other parents of children with disabilities and special health care needs. Strong bonds can come out of difficult moments. Parents and caregivers find allies who share pieces of their identity and culture - people who just “get it.” Bias and discrimination can be hard to prove and exhausting to deal with. Allies are important people who make the journey and its bumps easier.