A Personal Crossroads

If you survive long and prominently (or notoriously) enough in public life, the biographers eventually come calling. In my case, a series of recent interviews has caused me to flashback and reflect on the early years of my three and a half decades in television news. In that tumultuous period, the main event was a local television expose of an institution for the mentally retarded called Willowbrook.

It was a dreadful place and it is impossible to overstate the profound personal and professional impact that series of reports had on the rest of my life. As with the death of a loved one or a veteran’s remembrance of a long ago battle fought, the mere mention of that lyrical word, Willowbrook, ignites an emotional firestorm.

At the time, the institution on Staten Island, which is a borough of New York City, was the world’s largest for people we now call developmentally disabled. Over 6,000 mostly young, severely and profoundly retarded ‘residents’ inhabited the stark wards scattered around a beautiful campus complete with expansive lawns and lovely old trees. But the lovely exterior belied a monstrous world hidden behind windowless walls and locked doors.

Think ‘bedlam’.

That loaded word was coined after a scandal involving an English institution of the same name noted for its brutal conditions. But that dated back to the early 19th century. Willowbrook was 150 years later and inside the city that considers itself the capital of the civilized world. It was January, 1972, and for about a year and a half, I had been a reporter for WABC’s ‘Eyewitness News’. If we weren’t the originals, we were certainly the best known of the local news teams that would come to dominate the local news business.

The ‘team’ was a television family of sorts, featuring a diverse cast of characters designed to reflect the wildly diverse nature of the community we sought to serve. There was essentially one of each ethnic group represented, and we were sent out each day to report the great and not so great events of the day and to right the city’s wrongs.

On that typically frigid mid-winter day, a young doctor named Mike Wilkins called me at the station with the tip that led to the story of my life. Mike and I had worked together earlier on another investigative report, this one exposing discriminatory employment practices at another institution, a federal public health hospital. In it, Native American women recruited from reservations were working as licensed practical nurses. The essence of that story was that they were being paid a fraction of what other non-Indian nurses were being paid for the same work.

In any case, Dr. Wilkins and I had become social friends. We trusted each other and he didn’t hesitate to call when the Willowbrook situation came to a boil. A young idealist, Mike had transferred there from the public health hospital hoping to improve conditions that were well-known within the medical and psychiatric world, but not yet part of the public dialogue.

True, that Senator Robert F. Kennedy had visited Willowbrook in the 1960’s, emerging shaken from a tour of the wards and declaring the place a ‘snake pit’. But the reaction to that story was muted by the fact that no pictures of the facility were allowed. Patient privacy was cited as the reason for non-public access. Even parents were forbidden from taking any photographs and were usually only allowed to visit their children outside the noxious wards. Truth be told, as cruel as it sounds to say, many of the parents were effectively complicit in tolerating the conditions. The Kennedy family’s public position on Bobby’s retarded sister Rosemary aside, many parents of retarded kids closeted them for fear or embarrassment that their friends might think the family somehow defective.

So Mike called me to announce that he had just quit his job at Willowbrook in protest of patient care. He told me about the allegedly barbaric conditions that he called worse than the worst kennel and even reminiscent of a Nazi concentration camp. I figured that Mike while sincere was emotionally strung out by his employment situation and was exaggerating however innocently to get me interested in doing the story. I remember listening patiently to my friend, but not being overly impressed.

What could I do to fix a situation even Bobby Kennedy had ultimately been powerless to affect?

"I have the key,” Dr. Wilkins said in response, a key to the ward on which he had been working; a key that could open hell to the public.

“Where should we meet?” I asked immediately, understanding from my year and a half in the news business doing hardcore street stories about junkies, gangs and tenement life how pictures would be worth more than all the angry rhetoric ever directed at the place.

We rendezvoused at a diner on Staten Island. Mike slipped me the purloined key and also introduced me to a witness to evil; someone who would change my life.

His name was Bernard Carabello and on the occasion of Bernard’s 21st birthday, Mike had just legally liberated him from Ward ‘B’ of Building Six in Willowbrook, declaring himself Bernard’s official guardian.

For 18 years, the institution had been Bernard’s home in the institution. Adding criminal malice to neglect, he isn’t even retarded! Diagnosed with muscular dystrophy, at the age of three his single mother on welfare had been convinced to place him there. A gigantic warehouse for damaged human beings, for decades the institution had unofficially served as a handy dumping ground for kids with disabilities that were too much of a burden or inconvenience for their parents. So for 18 years, this handicapped, but non-retarded young man had been a prisoner in Hades.

In his halting, tortured voice, Bernard described for me on camera what it was like. I cry to this day remembering. “A disgrace,” he called it. Now stoked to fury by Bernard’s account and armed with the stolen key, my crew and I left the diner.

Aware of the armed guards and heavy security at the institution we planned a lightening raid. I knew we would only have scant minutes to film before security was mustered. Driving our Chevy sedan, we roared past the gate and headed straight for Building Six. We got out of the car with the camera rolling. Using the key, I opened the door and stepped off an emotional cliff.

34 years later, the words I spoke on camera later that day are burned in my soul.

“I knew it would be bad. It was horrible. This is what it looked like. This is what it sounded like. But how can I tell you about the way it smelled? It smelled of filth. It smelled of disease. It smelled of death.” 34 years later, just repeating those words brings tears and remembered nightmares.

The ward was crowded with children. Mostly naked, some were smeared with their own feces. Essentially unattended, they were everywhere, under sinks, knocking their heads against walls, one even lapping water from a toilet bowl.

I could go on, but what would be the point? You get the idea and no words can accurately convey the magnitude of the horror anyway. To make an epic story short, I was emotionally fractured by the experience. We rushed back to WABC’s W. 66th Street office, and with my old friend Marty Berman edited the first of what would become a hundred reports and documentaries over the long years since. I put it on the six o’clock news that night, despite angry calls from Willowbrook’s panicking administrators threatening to have me arrested for trespass or sued for privacy violations. I told them to shove it and the station backed me up. I wonder if they would back up a young local reporter today under the same circumstances?

The reaction to the first report was immediate and overwhelming. Seething with rage at what I’d seen, and spurred on by Bernard’s wasted years, I roared on camera at the officials responsible for the state-run facility. Then Governor Nelson Rockefeller had just cut $25 million from the funding of these facilities in New York, which accounted for some of the staffing shortages that exacerbated the already deplorable conditions. I let the governor and his responsible officials have it.

Thousands of outraged viewers called in an avalanche of public outrage that for a local news report may never have been matched.

What followed was a life shaping experience. One of the reasons I had left my old job as a legal aid lawyer was the belief that I could use my job as a newsman to bring about positive social change, to make life better for the people in our area. But I would soon learn the gigantic gap between outraging the public and actually changing the situation I was complaining about.

A combination of official and union bureaucracy, institutional inertia, and a shortage of public money all conspired to make the pace of change glacial and grudging. I established a charity to help channel the public’s desire to be involved.

Still around, it is called ‘One-to-One’ which symbolizes the proper approach to caring for the developmentally disabled, personally, not in giant warehouses where sub-standard care is mass-produced and where staff don’t even know the names or specific needs of those for whom they are charged with caring.

That summer my friends John Lennon and Yoko Ono headlined two sold out concerts in Madison Square Garden that raised more than $150,000, in those days an impressive amount. It would be John’s last full concert performance of his tragically shortened life.

On the same day as the concerts, to make the point that the retarded are more like the rest of us than not, and are deserving of personalized attention, we brought thousands of retarded kids to Central Park for a celebration of friendship. Each was paired with a volunteer buddy and the point of personal care was thereby emphasized.

We used the money to open our first small, community-based residence. It housed a half dozen kids and we used it as the model for which most care of the developmentally disabled these days is based. Today, there are hundreds of similar residences around the country. After I got tired arranging the charity concerts, we began an annual boxing tournament in association with a group of Wall Street brokers. The card featured a series of bouts between the best of the big firms. The main event was me fighting whoever they put up as their challenger in my weight class. We kept that up for years until I got tired of getting beat up in front of ten thousand blood thirty Masters of the Universe. For the last seventeen years, our primary fund raising tool has been a charity golf tournament, which yields more money and sheds less blood.

The story and its aftermath had an extraordinary impact on my life. It propelled me from local news to a national stage, leading a year later to my first network show, ‘Good Night America’. During the 1970’s especially, the fact that my life had improved so much more quickly than those of the residents whose condition I had exposed haunted my conscience.

Since then, though, even their hard lives have dramatically improved. From coast to coast, and really all across the civilized world, the big institutions are essentially history. The entire concept of warehousing human care has given way to the community-based model, which emphasizes personal attention and care.

Bernard and I are lifelong friends. He lives in a great apartment near Lincoln Center, and has been adopted as part of the extended Rivera family. He attends all functions, serving recently as an honorary usher at my wedding and earns a decent living running a New York State agency devoted to advocacy for the handicapped.

In 1987, Bernard and I were invited back to Willowbrook. There, then Governor Mario Cuomo presented us another key to Building Six. It was a key that would no longer be needed because Willowbrook was being closed. It is my most treasured award.