Perpetual Fight – 3/11/2020


In November of 1981, during my senior year of high school, I was invited to participate in a somewhat unique social experiment.  Eight students from my school were chosen to attend a weeklong national high school summit in the mountains outside of San Francisco.  Our delegation comprised four physically challenged students, four able-bodied students, and a teacher. 

Unbeknownst to me, when we arrived at the conference location in Camp Jones Gulch, the seven other high school contingents also had four physically challenged and four able-bodied students. The camp had a main lodge, which doubled as a makeshift cafeteria, and ten cabins.  The name of this summit was entitled “Project Interdependence.”

The meals always came out of the kitchen cold.  The weather was overcast with sporadic rain all week that soaked us to the bone.  There was no heat in the cabins.  And, we had the time of our lives.

Shortly after our arrival, we were escorted into the lodge and sat in a semicircle near the stage. A few minutes later, a middle-aged man in a power wheelchair slowly made his way to the front of the stage.  There was a breathing tube by his mouth that ran down to a small oxygen tank attached underneath his chair.  I recognized instantly, by his forced body movements, that he didn’t have cerebral palsy—but another type of neuromuscular condition. 

As his caregiver lowered the microphone stand to his mouth, there were mumbles, and some giggles, amongst the students.  In that moment, I recall feeling anger towards the gigging teens.  Upon reflection, I suppose that in a way, I took their giggles as a personal insult.  My sentiment was that they were prejudging this man based solely upon appearances.  When I heard that level of disrespect emanating from them, it struck a chord inside of me.  I flashbacked to all of those times when I endured reactions that were derived from ignorance.

The emcee introduced this man in the power chair and oxygen apparatus as “Ed Roberts.”  The emcee went on to say that Mr. Roberts is a pioneer of the disabled advocacy movement.  As Mr. Roberts started speaking, one of the event organizers prompted the  audience to settle down.  I’ve got to admit that as he began orating the first thing that caught my attention wasn’t the content of what he was actually saying, but rather how he had to heave his torso in order to give enough oxygen to each word. 

To his credit, Mr. Roberts recognized that many kids in the audience had never interacted with a person in a wheelchair before.  So, he interrupted his speech, smiled, and told a joke.  All of us burst into laughter.  After he did that, the overall mood of the audience changed.  The mumbles and giggles were replaced by silence and intense focus as we were hanging onto every word.

He went on to give us a brief biography of his life and what circumstances propelled him to become a disabilities advocate.  For example, in 1957 as senior in high school he had completed all of the necessary classes for graduation.  But, a school administrator wanted to deny him a diploma based solely on the grounds that Roberts couldn’t complete the physical portion of the driver’s education class.  Eventually, Roberts took the school to court—and won. 

Later on, he had to endure the bigoted remarks of a U.C. Berkeley dean who wanted to deny Roberts entrance into the university.  The dean is quoted as saying, “We’ve tried cripples before and it didn’t work.”  After another self-advocacy skirmish, he not only gained entry, but went on to earn his Bachelors (1964) and Masters degrees (1966)—in political science—from that very university.  His admission to U.C. Berkeley, in 1962, paved the way for other students with severe disabilities to attend that school.  They formed a club called “The Rolling Quads.”

His inspiring oration set the tone for the rest of the week.  The kids broke up into teams of eight.  During the day, we participated in various activities.  One day, we went hiking on a dirt trail that transformed into mud due to a sudden downpour in the afternoon.  I remember pushing my manual wheelchair backwards, with my feet, and laughing at the unpredictable nature of life.  As I glanced at the other kids, all of them were making jokes about our circumstances.  By the time I got back to the cabin, my shoes were caked with mud and my body was waterlogged.

Another day, we did trust exercises.  One particular activity from that day will always stand out for me.  We did something that they called a Ropes Course.  We were in an area with tall Redwood trees.  Two ropes connected two trees that were approximately thirty feet apart.  The lower rope was ten feet high while the higher one was fourteen feet high.  The goal was to get from one tree to the other by rope.

Each person had to wear a safety harness and helmet.  Then, they would be hoisted to the ropes by the other seven people.  After watching the first two kids successfully cross, I decided to give it a try.  Since my variation of cerebral palsy only affects balance, I thought that my above average strength would allow me to move my hands along the top rope then drag my feet along the bottom rope. 

After being “geared up,” they hoisted me to the ropes until I had a firm grip on the top rope and my feet on the bottom one.  I took a quick look down at the now far away ground and all that previous false bravado washed away as I felt some moisture in the front of my undershorts.  I looked back up and began my journey.  Halfway into the walk across, I was doing good by focusing on one motion at a time. 

But, when I was about ten feet from the end, both of my feet slipped off the rope and I was hanging on by my hands.  My teammates quickly responded and pulled on their harness rope to hoist me back up.  At that moment, I gained confidence in them that they had my back.  With a new outlook, my once tentative steps became bold strides.  And, I made it to the other tree.

However, prior to each day’s activities, we would have a half-hour team meeting.  We would toss around different ideas on how to better integrate students with disabilities in the high school culture.  Our team came up with some great ideas.  And, I had a few of my own.  When that week ended, the event organizers urged us to apply what we discovered at the conference and try to implement them at our own schools.  With all of our fresh concepts in tow, and the optimism of youth, we set out to make complete cultural inclusiveness—for people with disabilities—a reality.

Well, let’s fast-forward four decades.  What has really changed between then and now.  Many people point to The Americans With Disabilities Act (A.D.A) as a magic bullet that leveled the playing field.  Don’t get me wrong, that now 30-year-old piece of legislation was a step in the right direction.  But, over the years, its original purpose—and effectiveness—has been deluded.  People who wouldn’t otherwise claim to be disabled, have successfully expanded the term “disabled” just to benefit from the ever expanding A.D.A. umbrella. 

Unfortunately, as a counterbalance to these A.D.A. abuses, at least two disturbing trends have emerged.  First, in the workplace, a recent hiring strategy amongst companies has emerged as a way to indirectly exclude candidates with disabilities.  Even when a job requires no lifting—such as data entry—employers are wording job requirements stating that potential candidates must be able to lift thirty pounds.  Second, in the schools, inclusive education—or mainstreaming—has been around for almost fifty years.  Yet, in many areas of the country, there’s still a resistance amongst school administrators to provide basic accommodations for differently-abled, but academically capable and competitive students. 

 The sad part is that these discriminatory tactics against people with disabilities are still happening four decades after I attended the Project Interdependence Summit.  Back then, as a teenager, I thought that the ideas coming out of that great week would inspire some great cultural transformation—silly kid! 

So, what’s the solution?  As unpopular as this may sound to my fellow disabled brothers and sisters, it’s up to us to perpetually advocate for our rights in all areas of society.  Because the unvarnished truth—when it comes to disability rights—is that many able-bodied folks will eventually regress to doing what’s convenient for them.  Yes, ableism does exist, it is a real obstacle.  But, at the same time, it would be naïve to expect the able-bodied population to become suddenly “enlightened.”

Moreover, at this juncture, we can never rely on A.D.A. to take the place of old-fashioned self-advocacy.  As the old saying goes, “Anything worth having in this world is always going to take hard work and struggle.”  So, no matter how tiring or frustrating it may be, the disabled community needs to continue to push and push and push for our full inclusion into American society.  If we are captains of our destiny, rather than mere passengers, full inclusiveness will come to pass. 

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