The stares.
The glares.
The whispers.
Being made to feel self conscious.
Being made to feel not wanted.
Being made to feel like a less-than.
As I've thought about racism, discrimination and equality in the wake of the murder of George Floyd, my experiences raising a child with disabilities have come to mind. I've hesitated to write about this for fear of saying the wrong thing; I didn't want it to seem like I am saying the discrimination my Max has faced as a person with cerebral palsy is anything like the kind that black kids, teens and adults may contend with.
But the time has come for white people to stop avoiding conversations to avoid awkwardness. We need to talk openly about racism, or nothing will change. The truth is, our experiences form our perspectives and our ability to understand, empathize and relate. While I can't know what it is like to experience racism as an African American in America, I have seen a certain kind of discrimination in action and felt shock, anger and much pain. And I can only imagine how mothers of black kids and teens must feel at times, given the double whammy they have to contend with.
The moments are forever embedded in my memory.
That time in a bookstore a mother literally moved her child away from Max when he said "Hi."
That time in a restaurant some guy at the next table said "That kid doesn't belong here" when Max was talking loudly.
That time Max was shut out of a hotel camp program because of his disability.
That time Max was shut out of a hotel camp program because of his disability.
That time in an airport waiting area when a woman sitting across from us just gawked at Max until I said "Is there a reason why you're staring?" and she finally turned her head away.
Those times over the years when strangers have asked if Max attends school, commented that "at least he is handsome" or otherwise implied that he is a lesser human being for having a disability.
And that is just the prejudice and discrimination I have seen.
Imagine being a mother fearful for a child's life should a confrontation with the police occur because they are black and disabled. There have been several tragic incidents involving police and adults with disabilities in recent years, including a man with mental disabilities shot and killed by an off-duty police officer in a Los Angeles Costco in 2019. I remember a quote from an op-ed a mother wrote: "My son does not understand the law. But more urgently, the law does not understand people like him." Now pair that with the police brutality in our country toward African Americans—another double whammy.
The disparities for black children with special needs are legion. Black toddlers are FIVE times less likely than white toddlers to receive Early Intervention services for developmental delays, found a study published in The Journal of Developmental and Behavioral Pediatrics. Reports from the Autism and Developmental Disabilities Monitoring Network have consistently found that more white children are identified as having autism than black children or Hispanic ones. African American and Hispanic children are less likely to be diagnosed with ADHD than other races and ethnicities, reveals a study published in the journal Pediatrics. Cerebral palsy is more common among African American children than Caucasian ones, as the CDC documents—and there is a lack of research on the reasons for it. Black children are less likely to be enrolled in states' children's health insurance programs, research has found.
This all points to inequalities in prenatal care and in clinician support and advocacy for black children. The medical community needs to be examining its deep biases, too, along with police departments across the country. There are laws that can help protect our children because of their disabilities, including the Americans with Disabilities Act and the Individuals with Disabilities Education Act. I can't think of a law that protects black children with disabilities from the rampant inequalities that exist .
As always, our children have their mamas to help look out for them and take action. Maria Davis-Pierre, mom to an 8-year-old girl with autism, founded Autism in Black to support black parents and offer educational and advocacy services. Camille Proctor, mom to a 14-year-old boy with autism, created The Color of Autism Foundation with the same goals. But it shouldn't be just black mothers looking out for the well-being of black children with disabilities. It is the ob/gyn's responsibility, the pediatrician's responsibility, the schools' responsibility, society's responsibility.
And it is incumbent on us all to care—and to talk about this in whatever way possible. Even as white parents like me struggle with our white children with disabilities, we need to continue to speak up for those children who have double the struggle.
Beautifully said - I agree 100%. Kristen
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