Happy Ed Roberts Day!!!

Did you know that today is Ed Roberts Day? Have you ever heard of Ed Roberts Day? More to the point, have you ever heard of Ed Roberts? Ed Roberts Day was officially established in 2010 (by Governor Arnold Schwartzeneger) to honor the birthday and legacy (1939-1995) of this man who is widely recognized as the “Father of Independent Living”. A movement built around a philosophy of self-determination, self-identification, and consumer driven supports. He was a Polio survivor who was paralyzed from the neck down beginning at the age of 14, who lived the majority of his life in an Iron Lung.

Ed and his mother, Zona Roberts (the “Grandmother of the Independent Living Movement”), advocated for his right to an education and, through that advocacy, he became the first student with “significant” disabilities to attend UC Berkeley. That was in the 1960’s before American Citizens enjoyed the rights protected by Section 504, the ADA, and the ADA Amendments Act. His advocacy work, alongside other leaders among our People with Disabilities who chose to navigate around, over, under, and through both physical and programmatic…substantial and intentionally systemic…obstacles and barriers to secure those Rights for every American Citizen. Considering the fact that the CDC recognizes that one in four adults live with some form of disability, and the reality is that over 90% of us will experience the impact of at least one disability (be it physical, mental, emotional, sensory, etc.) at some point in our lives either through conditions of birth, trauma, or aging…these Rights and the Independent Living Movement and Philosophy are vital to not only every American Citizen, but the global evolution of society and humanity itself.

Due to Ed’s presence and advocacy, the wing of the medical center at Berkeley that housed his Iron Lung ultimately became the first disability accessible residence hall on a college campus. While there, he organized a group of students with disabilities who called themselves the “Rolling Quads” which then led to the creation of the first Center for Independent Living in 1972…still before Section 504 and the ADA. Centers for Independent Living now exist in every State (though, at least in Indiana, not every county has access to their services) and these Advocacy centers provide free or low-cost Independent Living Services to anybody who self-identifies as a Person with a Disability. The primary focus of every Center for Independent Living should be “Advocacy, Advocacy, Advocacy!” and their services are built around Self & Systemic Advocacy, Peer Support, Information & Referral, Independent Living Skills Training, and Transition Support/Navigation. (Despite an infrastructure that has developed over the last 35 years, including State Independent Living Councils, State Vocational Rehabilitation Services, and the Federal Administration on Community Living, most people with disabilities still don’t know what Independent Living is or how to access the supports that the movement provides…it is one of the best kept secrets throughout our nation).

Ed went on to serve as the Director of the California Department of Rehabilitation from 1976 to 1983. It’s interesting…and important…to note that this is the very same agency that had previously declared Ed Roberts to be “unemployable” due to his significant disability. In 1983 he co-founded the World Institute on Disability to promote Disability Rights & Policy on an international scale. The impact of his work, and those who fought alongside him, can be seen in all accessible aspects of society. Everyday accessibility features that the majority of our communities initially resisted and now take for granted; things like curb cuts, ramps, zero-point entry, automatic doors, accessible public transportation, accessible public restroom stalls, accessible parking, and a myriad of other accommodations that help everyone regardless of any mental or physical condition (actual or perceived) that substantially limits one or more major life activities are a direct result of their work.

People with disabilities tend to feel isolated from our communities…often even in our own homes, among our own family and friends. Society developed with a medical model of disability that insists people with disabilities should be treated in institutions instead of embraced as functional members of society. (Did you know that some States and Cities in the United States of America once had “ugly laws” that made it illegal for People with Disabilities to be seen in public? The last of these was repealed in Chicago in 1974). Ed Roberts is one of the American Citizens who demonstrated for the entire world that a Social Model of Disability is, in fact, the most effective, impactful, and productive approach to incorporating disabilities as a Culture that has always been part of our global society.

Ed Roberts is truly an American Hero who, simply through the way he lived his life by defending and exercising his independence, changed our world and paved the way for a way of life that many Americans take for granted today. You may ask yourself, “why didn’t I learn about him in school?” The reality is that they don’t teach us about people with disabilities as a part of American History, or even World History…at least not here in the United States. Sure, a disability might get mentioned, though more often than not as an anecdote like the fact that President Franklin Delano Roosevelt was paralyzed from the waist down by Polio and went to great lengths to conceal the extent of his paralysis from the American public…instead of teaching us that the first hand controls for an automobile were developed for him to drive independently. Imagine how different children with disabilities would feel about themselves (and be treated) if all children learned in school that United States Presidents like Franklin Roosevelt, John F. Kennedy, Abraham Lincoln, Joe Biden, Bill Clinton, Ronald Regan, Woodrow Wilson, Theodore Roosevelt, James Madison, and even George Washington lived with some form of visible or hidden disability that impacted their activities of daily living, but with or without accommodation did not restrict their ability to live independently and achieve their goals and self defined potential.

The history of People with Disabilities is not taught in our schools and the capabilities, contributions, and value of people with disabilities is regularly minimized and hidden by politicians and bureaucrats. While this has been a systemic issue for generations, over the last year the disability community in the US (and abroad) has seen almost constant attack from the US Administration through Executive Orders, policy changes, organizational changes, inappropriate and unwarranted public blame for disastrous events like the plane crash over the Potomac (before any investigation had taken place), lawsuits that seek to deregulate Section 504 and weaken the ADA, legislation that drastically cuts community based supports like Medicaid and SNAP, banned language, and on and on. So, it is now more important than ever to learn our history, and the modern Rights and Privileges we enjoy because of the efforts of people like Ed Roberts. With that in mind, I ask that you share this with your spheres of influence, your friends, your family, your congregations, your co-workers, etc. and take a moment to acknowledge all the aspects of your world that support your ability to exercise, express, enjoy, and preserve your independence, and celebrate a happy Ed Roberts Day!!!