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As a Black mother of children with autism, I cannot separate my passage into a disability-centered way of navigating systems of care from my blackness or other critical identities, such as being a single mother and a first-generation Nigerian American.
This week marks the 30th anniversary of the signing into law of the Americans with Disabilities Act of 1990.
While there have been many victories since, including workforce investments, the expansion of special-education services and reduced stigmatization of people with disabilities, there is a long road ahead in understanding how culture intersects with the political aspirations of the Disability Rights Movement.
The next chapters of this movement must be transformative and viewed through a justice lens. The devastating economic stress of the coronavirus pandemic, coupled with the anniversary of the Americans with Disabilities Act, marks a critical moment of reflection to give definition to and create opportunities for understanding disability justice, not just disability rights.
Inequities in access to quality special-education services are foundational to understanding the need for a disability justice framework.
Students with disabilities, particularly those with intellectual and developmental conditions, face remarkable challenges in access to education and health care at this time of shelter-in-place orders, distance-learning and tele-health.
While this reality is true across racial and socioeconomic lines, the consequences of not having sufficient and efficient solutions to regression in key developmental areas for many disabled students disproportionately affect low-income, Black and Brown families.
The most significant consequences of not having sufficient access to special-education services are the avoidable fatalities and injuries that can occur as a result of a lack of support in the home to help manage care of vulnerable children, particularly those with mental-health conditions or severe cognitive impairments.
The mental health toll on primary caretakers must also not be overlooked, and the increase in depression among family members puts at risk families already experiencing historic trauma or perpetual poverty.
In centering an understanding of these disability justice-related issues, I want to be clear on what is not my opinion. It is not my opinion that child protective services are the first line of defense when engaging vulnerable families, such as those with children with disabilities and special health care needs (including mental health). Particularly for those who have intersectional identities — such as being Black or Brown, low-income, undocumented, housing-insecure or in a multi-generational household with multiple family members who have disabilities.
The knee-jerk referrals to child services and the disruption of home life that is commonplace — particularly among low-income Black families — create significant and perpetual distrust that results in the opposite of the positive and family-centered solutions championed in the Disability Rights Movement.
The elephant in the room in creating sustainable solutions for families of children with disabilities is implicit bias. Many government agencies, particularly child services and other health and human services agencies, continue to operate from the foundation laid by the “refrigerator mother” theory.
This theory, developed by Leo Kanner in 1943 and promoted widely by Bruno Bettelheim in the 1950s and 1960s, both Freudian scholars, stigmatized a whole generation of mothers by faulting them for their children’s disabilities and mental-health conditions. It was through this theory that many children, particularly from low-income, immigrant and Black communities, were displaced from their maternal homes and put into institutions.
Black mothers face another level of stigma with the legacy of the 1965 Moynihan Report, which blamed single mothers’ poverty in the Black community. The legacy of this report, along with that of the refrigerator mother theory, haunts the reputation of Black mothers of disabled children and informs the implicit biases within systems of care.
Thirty years after the passage of the Americans with Disabilities Act, a disproportionate number of people living in poverty are families of children with disabilities.
Also, Black disabled youth are more likely to have frequent encounters with the police, resulting in higher rates of police brutality and fatalities. Black and Latino children with autism are less likely than white children to receive an appropriate diagnosis before the age of 5. Black students with disabilities are less likely to graduate with a high school diploma or be employed during the transition into adulthood.
These biases also inform why Black students with disabilities are more likely to be secluded or forcefully restrained and suspended or expelled from school.
Thirty years in, it’s time to change this narrative and shape the next chapters of the movement to reflect the cries for disability justice.
This story about the 30th anniversary of the passage of the Americans with Disabilities Act was produced by The Hechinger Report, a nonprofit, independent news organization focused on inequality and innovation in education. Sign up here for Hechinger’s newsletter.
Chioma Oruh is lead activist for The Brightbeam Network and the mother of two children with autism.