The history of tragedy, advocacy and activism for Americans living with disabilities dates back to the 1800s, with the brutal sterilization campaign that targeted minority groups, women and low-income individuals. The dark impact of the eugenicists movement was felt well into the 20th century.
Today, Americans living with disabilities face a vastly different environment. The landmark Americans With Disabilities Act was passed in 1990, granting Americans with disabilities legal protection against discrimination. In the decades since, a reduction in stigmatization has led to more diagnoses, treatment and employment opportunities.
The progress should be celebrated, but it cannot be cause for complacency. Americans with disabilities and their advocates are resilient, but their resilience is not a substitute for improving policy.
In California, over 7.6 million individuals are living with a disability, about 27% of the population. Further, 38% of the state’s health-care spending is for Californians with disabilities. Despite this resource investment, health care remains one of the most serious issues facing people with disabilities and their families.
Medicaid is a major provider of health coverage for Americans with disabilities. Recent expansions have increased coverage in some states, but 10 states still have not expanded Medicaid under the Affordable Care Act. Around the country, further Medicaid expansion is required to ease financial burdens on families and individuals facing a disability.
The role of parents as primary caregivers for young and adult children with disabilities should also be noted. A number of programs are offered by state and federal agencies to aid parents that support their children, but no program covers the full costs of care or assuages concerns about who will care for the child when the parent is no longer there.
Mothers and fathers who care for their children with disabilities should be honored. The financial burdens they face should be studied and lessened. No family should slip into poverty as they pursue the best possible services for their children.
Access to quality education for Americans with disabilities has also improved over the past decades, but challenges remain. In grade schools and high schools across the country, the COVID-19 pandemic response worsened an already poor situation. For decades, there has been a shortage of special education teachers: an average of 80% of states reported special education teacher shortages between 1998 and 2018. The California Department of Education has said the shortage has existed for several years and impacts particularly vulnerable communities.
The shortage threatens access to public education for millions of students and will snowball if it is not addressed now. Federal and state agencies must explore ways to incentivize more special education teachers, limit bureaucratic obstacles when possible, and fully recognize the demands that teachers face.
Finally, one more pressing issue facing the community today has its roots in the Fair Labor Standards Act of 1938. Nestled within this act is Section 14(c), which allows for “subminimum wages” to be paid to Americans with disabilities. Subminimum wages are most common in sheltered workshops, which provide employment for community members meant to prepare them for future jobs. According to the California State Council on Developmental Disabilities, these workshops do not prepare individuals for future employment opportunities. Beginning in 2025, California will ban the practice of subminimum wages, but the practice will continue in dozens of states until federal action is taken. Economic empowerment is fundamental to the disability rights movement. When possible, wage reform and tax incentives should exist to bring Americans with disabilities into the workforce with dignity.
Health care, education and employment are herculean challenges facing Americans with disabilities today. It stretches credulity to suggest that solutions to these problems are around the corner. At the same time, it stretches the fabric of decency and justice to suggest that these problems are not worth discussing. There should always be a light on the disability rights movement here in California and around the country.
Let’s pay tribute to the parents, often primary caregivers, who hold and love their children like no one else can. Most importantly, let’s pay tribute to the millions of Americans with disabilities who live each day to their fullest ability and refuse to be defined by the constraints of others.
Luke McFadden, of Mill Valley, is a student at the University of Washington in Seattle.
