Spotlight on the lives of two disability advocates
Judith Heumann & Fred Maahs, Jr.
Judy Heumann got polio when she was 18 months old. At the age of 18, Fred Maahs, Jr., had a diving accident which rendered him a paraplegic. Although they were born only 15 years apart, their experiences growing up in the United States as people with disabilities were as different as much as they were similar. I had the opportunity to speak with both of them recently to learn more about how they became advocates for people with disabilities.
JUDY: I was born in Philadelphia in 1947 and grew up in Brooklyn. I think I learned from birth how to be an activist because I faced discrimination early on, such as my denial of the right to go to school. At that time, in the 1940’s and 1950’s, there were no organizations composed of families who had kids with disabilities other than United Cerebral Palsy, so when I was eventually allowed to go to school, I was the only child there whose disability was not Cerebral Palsy. Camp Jened, a camp for children with disabilities in New York, was a much-anticipated part of my teenage summers and it was also where the need to be a voice for the disabled was born. The Netflix documentary, Crip Camp. A Disability Revolution, provides some insight.
FRED: Mine was a standard childhood, attending elementary and high school in my Wilmington, Delaware community. However, at 18 years old, while on vacation with my family just a few days before I was due to start college, I dove into the bay from a boat and hit my head on a sand bar in a foot of water. My seventh vertebrae was broken, I was immediately paralyzed from the chest down, and my life as a person with a disability began. It was 1980 and it was 10 years before the Americans with Disabilities Act was signed into law. After spending seven months in the hospital and completing my physical therapy rehab, I came home and started to live my life. But I wanted to go college as I had planned.
The importance of advocacy
JUDY: I attended Long Island University and was interested in going to that university because it was small and I didn’t have to cross the street. I registered to live on campus and was living in a dorm that was not accessible. My roommate was to be my personal assistant but that summer, I received a call from the head of the dorm letting me know that the lady who was going to help me had backed out. It turned out she backed out because the head of the dorm had told her ridiculous things about me, such as I frequently fall out of my wheelchair, which of course was not true. I was able to find somebody else but I decided I was going to call the President of the university and Head of the Board to complain. Everyone thought this was a crazy thing to do, but I did get to the Chair of the Board’s office, who referred me to the Dean of Students, who called out the lady in charge of the dorm. The Dean of Students came with me the day I moved into the dorm in my sophomore year! I was at that time beginning to learn that I should not just accept what was given to me. This was important even though at that point, it was scary!
I graduated from Long Island University in 1969 with an undergraduate degree in Speech Communications and a minor in Education. My Master’s Degree in Public Health was obtained from the University of California at Berkeley in 1975.
When Section 504 of the 1973 Rehabilitation Act, which was the first disability civil rights law to be enacted in the United States, prohibiting discrimination against people with disabilities in programs that receive federal financial assistance came into being, I was the President of Disabled in Action, an organization I formed in 1970 with friends, aimed at ending discrimination of people with disabilities.
FRED: After my accident, college was delayed for about a year because I had spent so much time in the hospital for physical rehab and the college I had originally planned to attend was not adapted and not wheelchair accessible. So, I enrolled in a small local college, Widener University’s Delaware campus. I took a few summer courses at Widener and helped to adapt the college campus because I was the first student to use a wheelchair and graduate from there in 1983. I remember the biggest class I had might have had 15 students in it. I was a commuter student and had friends on and off campus. Parties and dances were held on the second floor of a building that only had stairs, so I would be carried up and down the stairs by friends. When I transferred from Widener In Delaware to West Chester University in Pennsylvania, I became a voice on campus, advocating for it to be made more accessible. This was at the time when Section 504 of the 1973 Rehabilitation Act was already passed, therefore colleges and universities that were not complying were actually in violation of the law.
Not socially isolated
JUDY: I was active on campus, a member of a sorority and student council. I was a bit of an activist even then, involved in anti-war demonstrations; there was a big issue going on in our campus around tuition being raised and there was a student movement against pollution, and I was involved in those activities. I also held a number of jobs on campus. I worked in the president’s office and the alumni office. So, I was always active although there were not many other wheelchair users on campus. My social life was centered mainly around my sorority and the various projects they undertook.
FRED: I too had an active social life in college. I made many friends. We would go to the movies, go bowling, go to parties, or they would come to my house. I was commuting to classes every day and my dad, who was building an office building less than 10 minutes from my college, would drive me to class or have one of his workers take me there, and would pick me up at the end of class.
Barriers in the workplace
FRED: I started working in a corporate setting during my first year of college. Encouraged by my father, I attended a job fair. I recall there were hundreds of people in line, but I applied and they literally hired me on the spot. Ironically, my company was in a two-story building with no elevator. My office was on the second floor and the accessible toilet was on the first floor! Either my dad or one of his workers would drop me off at work every morning after my classes. The guard would come out, he would call upstairs and two guys who ended up being my best friends would carry me up and down the stairs as needed.
JUDY: When I left college in 1969, I applied to be a teacher but was denied. It was in the 1960’s in New York where applying for a teaching position required taking a written and oral exam plus a medical exam and if you pass those you can get a job. I passed my written and oral. I failed the medical only because I had polio and could not walk! I sued the Board of Education of the city of New York, which was settled and I was given my license and was hired as a teacher. I then became the first wheelchair user to teach in New York City, which I did for three years.
After JUDY’S teaching career, she moved on to hold various influential positions, such as:
– The first Advisor on Disability and Development with the World Bank
– Assistant Secretary of the Office of Special Education and Rehabilitation Services in the Clinton Administration
– The Deputy Director of the Center for Independent Living, California
– Special Advisor on International Disability Rights for the U.S. State Department in the Obama Administration
She helped to develop legislation that became the Individuals with Disabilities Education Act. With friends, she formed the Disabled in Action (DIA) organization; is the recipient of numerous awards and have appeared in many documentaries.
Her book: Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, speaks about her struggle for equality as someone who lived paralyzed from polio and “her lifelong battle to achieve respect, acceptance, and inclusion in society. . .” It is available on Amazon, IndieBound, Barnes and Noble, as well as in audiobook format on Audible, narrated by Ali Stroker.
Also insightful is the Netflix documentary, Crip Camp. A Disability Revolution which gives a glimpse into the summer lives of kids with disabilities at Camp Jened in upstate New York during the 50’s -70’s. Disability rights activists later emerged from within the camp-goers, Judy being one of them, organizing and fighting for an end to discrimination against people with disabilities.
Follow Judy on:
Facebook: @ Heumann Perspective
and Twitter: @judithheumann
After spending more than 30 years as a Corporate Executive for Fortune 100 and Fortune 50 companies, FRED founded FJM Solutions, LLC, where he now focuses on serving underserved and under-represented populations, especially people with disabilities. He is a passionate, recognized leader in the international disability community and in Corporate America. As an advocate for people with disabilities:
– He is a Board Director and a Past Chair of the American Association of People with Disabilities
– He is a Director and Past Vice Chair on the National Easterseals Board of Directors
– He served on the Board Development Committee for The Arc of the United States
– He has served on three panels at the White House regarding issues that impact the lives of people with disabilities
– He has been the subject of many publications and for his accomplishments accomplishments as a person with a disability and for being a devoted champion for the disability population
– He is an internationally renown accessible travel expert and keynote speaker
– He has delivered remarks on the world stage, including Dubai, Israel, and Canada
– He continues to consult with countries that include Israel, the Caribbean islands, and will soon add a number of othercountries to this list
– He is the Chief Operating Officer and partner at Travel for All
– He serves as Editor of Melange Accessibility for All magazine
Follow Fred on: Twitter: @FredMaahs
Although having somewhat different experiences while growing up as people with disabilities, both agree that there is much more to be done for this demographic in the US and around the world.
The American with Disabilities Act prohibited discrimination against people with disabilities with respect to employment, public transportation, access to public buildings, and access to state and local programs and services. It removed most of the physical barriers that prevented people with disabilities from entering into most places, but, people with disabilities still face challenges.
Attitudinal barriers prevent people with disabilities from being employed. The unemployment rate for people with disabilities is more than double the national average unemployment rate in the US. And, sadly, it is legal to pay people with disabilities less than minimum wage, in some situations.
Disability advocacy therefore continues.