Cerebral Catholic Dad

Editor’s Note: The following was written in early July with the hope of having it published. It is now after Disability Pride Month, but here is the op-ed I wrote about the current threat to 50 years of disability rights law.

Thirty-six years ago, Congress did something extraordinary: Republicans and Democrats came together to pass one of the most significant civil rights laws in American history — the Americans with Disabilities Act (ADA) of 1990. Today, as we reflect on this milestone, we must remember that the path to equality was paved by relentless activism and a demand for dignity.

For generations, people with disabilities endured dehumanizing treatment: barred from public life by “ugly laws,” subjected to forced institutionalization, and denied equal opportunities. The 1973 Rehabilitation Act was a first step in promoting equal rights for people with disabilities, but its protections were limited. It took a historic 26-day occupation of a federal building in San Francisco in 1977 to force the government to implement regulations, proving that progress would only come through struggle.

By the mid-1980s, the movement pushed for comprehensive reform. Leaders like Justin Dart, who contracted polio as a young man, became champions for change. After witnessing the horrific conditions in segregated facilities, Dart and his wife traveled the country gathering testimony from people who had experienced barriers to education, employment, housing, healthcare, and participating in public life because of their disability, amplifying voices that had long been silenced. This grassroots effort became the catalyst for the ADA.

The ADA faced fierce opposition from business interests who branded it a “bankruptcy bill.” Yet, powerful bipartisan allies emerged. Senator Bob Dole (R-KS), a disabled veteran, worked alongside Senators Tom Harkin (D-IA), Ted Kennedy (D-MA), and Orrin Hatch (R-UT) to champion the cause. When the bill stalled in the House, activists took to the U.S. Capitol steps in what was referred to as the “Capitol Crawl.” Protesters abandoned their wheelchairs to climb the building’s 86 steps, a visceral demonstration of how inaccessible architecture shuts people out of democracy. Shortly after, leaders such as Reps. Steny Hoyer (D-MD), Steve Bartlett (R-TX), James Sensenbrenner (R-WI), and Minority Leader Bob Michels (R-IL) worked together to shepherd the bill through the House.

On July 26, 1990, President George H.W. Bush signed the ADA, declaring that the “shameful wall of exclusion” would finally come down. The impact was immediate: there was now guaranteed access to public buildings, transportation, and workplaces. The country also discovered the “curb cut effect” — that accessible infrastructure benefits everyone, from parents with strollers to older Americans.

I was four years old when the ADA was signed. Born with cerebral palsy, my future was transformed by this law. I attended mainstream classrooms, earned my degrees, and today I am a husband, a father of five, and the Vice President of Policy for the American Association of People with Disabilities.

Yet, thirty-six years later, the promise of the ADA remains unfulfilled. Two-thirds of working-age Americans with disabilities are still unemployed, and an antiquated provision still allows some to be paid less than minimum wage. Hundreds of thousands remain on waiting lists for home and community-based services (HCBS), which are vital for independent living. Recent billion-dollar cuts to Medicaid threaten these essential lifelines. 

As we celebrate 250 years of independence, we are witnessing alarming attempts to roll back nearly 50 years of progress in disability rights. Recent legal opinions from the Department of Justice’s Office of Legal Counsel (OLC) suggest the government has no obligation to accommodate people with disabilities in integrated environments, a stance that threatens the very foundation of our inclusion in society

The community integration mandate that the OLC memo threatens is still urgently needed today. Discrimination against people with disabilities is still present in every facet of life. As a parent myself, it terrifies me that in many states, my children could be removed from my home if someone decided they were uncomfortable with a man with an awkward gait and a speech impediment being out at Costco with his five children.  I have had people follow me out of the supermarket and take a picture of my license plate because I was out in public with a disability and carrying a bag of groceries in one hand and a toddler in the other.

In 2024, the Department of Health and Human Services worked to address this discrimination by issuing a rule updating Section 504 regulations for the first time since 1977. For the first time, the new regulations mandate that hospitals and other healthcare facilities have accessible diagnostic equipment, such as exam tables and imaging equipment. Child welfare agencies that receive public funds cannot discriminate against parents or prospective parents with disabilities simply based on stereotypes, and must make reasonable accommodations where necessary.

Without a mandate to integrate people with disabilities in the community, paired with federal, state, and local agencies and lawmakers remaining committed to further reducing discrimination against people with disabilities, my life–from the time I started Pre-K3 in one of the first mainstreaming pilot programs in metro Boston in 1989, to graduating from UNC-Chapel Hill in 2009 and obtaining a master’s degree in 2017, to climbing the professional ladder, to getting married, having kids, driving a car, owning a home, and being a policy executive for a national disability rights organization—would not exist.

The community integration mandate ensures that people with disabilities can access services in the most integrated setting possible, in accordance with their needs. As such, the most integrated setting will look different for everyone.

It is important to note that nothing in Section 504, the ADA, or the Olmstead decision mandates that every person with a disability live independently by themselves. It goes without saying that it may not be feasible for every individual. Nor does the ADA mandate that employers hire individuals with disabilities for positions for which they are not otherwise qualified.

In fact, these bedrock disability rights laws often enable children with disabilities who need complex levels of care to live at home with their parents and siblings, rather than being institutionalized at a very young age, as was often the case before the 1970s. Moreover, before the Education of All Handicapped Children Act (better known as the Individuals with Disabilities Education Act) was enacted in 1975, public schools could and did refuse to enroll students with disabilities.

As if a woefully misguided reading of Olmstead wasn’t alarming enough, on Friday, July 17, the U.S. Assistant Attorney General for Civil Rights issued a clarifying memo stating that the Department of Justice will no longer rely on Olmstead/ADA compliance guidance issued by the Department in 2011, which has been the basis of consent-decree agreements with several states in the 15 years since to ensure compliance with the mandate to integrate people with disabilities into community settings, to the extent possible.

We cannot allow civil rights to be treated as optional. The ADA is not a finished chapter; it is a promise “to be kept.” As we commemorate this anniversary, gratitude is not enough. We must recommit to the work ahead. Access and equity are not privileges — they are rights that must always be defended.

Simply put–without Section 504, the ADA, and Olmstead, my life would not exist, and many who know me as a successful man with a career and a family very simply would not. Disability can happen to anyone at any time, and disability does not care who you voted for in the last election. I ask that my readers put aside partisan allegiances and think about how different their lives, my life, and the lives of all individuals with disabilities would be in the absence of these laws.