Even though I retired from the New York State Assembly in 2014, there isn’t a week that goes by that I don’t receive a call from someone looking for my help and advice concerning their special needs child. They tell me tragic stories about their sons and daughters who havebeen suspended from public and private schools for poor behavior, when in reality they should have received services for their special need. Others have a child whose behavior issues make placement in a needs program difficult for them. Parents call to ask how they can get better care for their institutionalized child who is already totally dependent on their caregivers for food and other basic needs, and has to wait until someone has extra time to give them a hug or hold them. I hear from family members who have someone who has aged out of the programs they’ve been entitled to, and they need help with next steps. Independent living housing is another frequent topic, because in our system there’s a waiting list of twelve thousand or more for specialneeds adults who can no longer live at home with their families.
These parents contact me because they know I have been fighting for the needs of our most vulnerable citizens—people with severe physical and mental disabilities—for over thirty-eight years. They are aware that I know from experience that for every appalling story I hear, there are solutions to fight for. Among these is teaching all able-bodied individuals who are in the position to make a difference for special needs people—the teachers, medical professionals, and politicians—that these people have value to our society, and they need us to advocate for them.
They may also know that I learned from my son Ricky and his mother, my wife of forty-eight years, Ellen, that special needs children have so much unconditional love to give the rest of us. It is my mission to make sure that everyone else learns that too.
I have been a ferocious champion for people with special needs, which has mattered to me since I first met my Ellen and saw the love she had to give to her child Ricky. In fact, her love and devotion to her child, who was born with cerebral palsy and was unable to speak or cry, was what most attracted me to her at first—though it didn’t go unnoticed by me that she was also extremely beautiful and kind. I think I was very brave to approach her that day in 1965 at the Coral Reef Beach Club in Long Beach where I was working as a lifeguard, because I was intimidated by her beauty, as well as her life experience and knowledge.
I quickly realized what a gift it would be to go through life with such a wonderful and caring person as my partner, to have her in my life for my own two boys, and to enlighten me about all that I still needed to learn. We had a love that is everlasting and I believe God set this up for us. We celebrated fifty years of total happiness before she passed away on April 18, 2016, and I miss her every minute of every day. This account is in part about Ellen and the relationship we were blessed with. In the book, I’ll talk more about meeting Ellen. Our partnership encompassed the rest of the stories told in this book as well, as she was present for all my work for the City of Long Beach, and my work on behalf of the state,usually attending meetings by my side.
This is also a story about my oldest son Ricky. I watched Ellen’s early struggles to care for him. When she could no longer do so on her own, in part because she also had two little girls at home and was dealing with her own health issues, she found him a group home for children with intellectual disabilities where she hoped he would thrive. A few short weeks later she discovered with horror that her child had suffered physically and emotionally at the hands of his paid caregivers at this state-supported institution, Wassaic State School in upstate NewYork. This experience was the beginning of Ellen’s and my own awareness of the complex and horrifying inadequacies of services available forchildren with special needs.
Everyone who ever met Ellen loved her because she always had a smile. She never had anything except a kind word to say about anybody. That is the way Ricky still is, even though he was mistreated in not just that first, but also a second group home, Allegheny School in Pittsburgh, Pennsylvania, before we could rescue him—and then again when he was in his fifties. Yet these experiences never changed his personality of being sweet and good. He is now a sixty-year-old man and he has never caused any trouble to anybody. We still get birthday cards and mail from his direct care workers from twenty years ago who remember Ricky as the person he is, and that’s a reflection of who Ellen was as well. There’s more to tell about Ricky’s story, so a section of the book will focus on my special son.
I also want to share stories about the people who inspired me early on, including my big family of parents and my sister, my grandparents, aunts, uncles, and cousins, almost all of whom called Long Beach home. I was brought up surrounded by a loving family who taught me these values: to be healthy, to be fair, and to give happiness to others. Their love and closeness moved me to want to care for others early in my life, so I started my career as a police officer long before entering politics. (There will be more on my varied career, which for most of my lifeincluded two jobs at once.)
I have also been motivated by the city I have lived in for all but my first year of life. My history as a resident of Long Beach has impacted my public service activities in profound ways. That is why in Chapter One I include not only the stories of my family members who influenced me and the coaches who inspired me, but also my early history with thisspecial barrier island off the South Shore of Long Island.
I believe that God gave me an angel in Ricky, a saint in Ellen, and thanks to both of them, a mission to spend the rest of my life making sure that Ricky and children like him won’t suffer. Throughout this book, I’ll share the work I did and why it mattered, as well as the people Ellen and I met, and the experiences we had along the way. Though the work will never be completely done, during my career I have had a hand in passing ground-breaking legislation and programs that have made a difference in the lives of special needs children and the people who love and care for them.
But I didn’t just work on issues regarding people with disabilities. I have also pushed through other laws to crack down on drunken driving and sexual predators; increase transparency in government; and increase funding for police, firefighters, and other first responders. I even found a way at age sixty-nine, posing in my Speedo on a billboard, to draw attention to the need for sun protection when I became concerned about the lack of expiration dates on sunblock lotions. To this day people talk to me about that billboard. For years it was a landmark that people would use to give directions. They’d say things like, “I’m here with Harvey at Rockaway Turnpike.” There were also countless laws to protect the environment, particularly for my beloved Long Beach. In all, I got three-hundred and thirty-seven bills signed into law during my time in office. Some issues may seem narrow, but many have national resonance and provide valuable political lessons in how to get things done.
At the same time, I believe all politicians are only as good as the citizens they represent, and I am no exception. I have been blessed to work with countless citizen heroes who have inspired me time and time again. Many were parents who suffered tremendous adversity, but came back fighting to make sure that others wouldn’t go through the same agony. Their tragic losses led to important legislation like Leandra’s Law, which imposes tough penalties on adults who drive drunk with children in the car; the passage of Louis’s Law, which made it a requirement that all public schools have life-saving defibrillators (AEDs); and Jonathan’s Law, which entitles parents and legal guardians access to all child abuse investigation files and medical history records.
Still other heroes were volunteers at community centers, police officers, fire fighters, social workers, and consumer advocates. When Superstorm Sandy hit New York and New Jersey, I saw armies of volunteers from here and around the country. They muscled through the wet, the cold, and the chaos to provide shelter and relief to thousands of people who had lost their homes. These are good people who force politicians to be good, and they make a difference. In the book I focus on all the issues I fought for, both the causes I found on my own, and the ones brought to my attention by people who needed my help to muscle them onto the table of our State government.
As a Democrat, I was an elected official for thirty-eight years, thirteen as a council member for the City of Long Beach and twenty-five in Albany. Throughout my time in politics I was able to work in a bipartisan way. I have worked—and in some cases wrestled with—New York leaders, like Mario Cuomo, George Pataki, David Paterson, Eliot Spitzer, Chuck Schumer, and Hillary Clinton. I have come under fire from both liberals and conservatives. I’ve been conservative on issues like law enforcement and reverence for the American flag, but I’ve also been a staunch supporter of gay marriage, abortion rights, and religious tolerance.
I am one of the happiest people I know. I didn’t always win. I got into fights within my own party’s leadership—still do—and I’ve been double-crossed more than once. Governor Mario Cuomo once called me tenacious, but he didn’t mean it as a compliment. I had forced his hand on a bill, and he was irritated with me. I’ve scraped with every governor since then as well—George Pataki, Eliot Spitzer, David Paterson, and Andrew Cuomo. But I never stopped trying, and I’m glad I didn’t.
As a matter of fact, because of the message I sent about politics—that as a legislator my priorities were not for political parties, but for the people—my colleagues respected that. Therefore, most of my legislation passed with unanimous consent by both Democrats and Republicans. I even have a resolution signed by every Democrat and Republican from Long Island thanking me for my years of service.
I can also say that I am still impacting the families, agencies, and schools with my knowledge, information, and experience about why it’s so important to have trained professionals to be able to help the people who are the neediest. The most discriminated people in our society are those with disabilities, and unfortunately it’s the most difficult job in the world to take care of another person. Anyone who has that chore understands that there are people in government making monetary decisions that don’t make this their top priority. I’m still making politicians aware that it has to be their main concern. The health and safety of human beings and the treatment, dignity, and respect that they’re entitled to are not present if you are understaffed, overworked, and underpaid. When that happens, you have consequences like the ones you’ll learn about in this book.
Anyone who knows me is aware that I have never had any trouble speaking my mind. I have been called blunt more than once. I have given hundreds of speeches, but I have never written one down in my life. That’s because God gave me this ability to speak out and express my feelings. I always speak with my mind and heart about the things that matter most to me. Recently I spoke at Hofstra University in Uniondale, New York, where I received an honorary doctorate degree. I explained to the parents and students there that for me success is defined as being happy with what you do, not how many financial rewards you receive and how many dollars you make. That’s why I chose public service, because the biggest reward I could possibly get comes from the heartfelt “thank yous” I still receive on a daily basis.
Even these days, when I take my daily walk on the boardwalk, eight out of ten people come to say thank you to me, some I don’t even know. The work I have done with Ellen touched thousands of peoples’ lives all over this country. We had the experience of being able to help families with special needs give their family members quality of life in a safe environment. I have dedicated my life to insuring the removal of barriers, improving access, and enhancing the quality of life for those who are challenged. To me, that is one of the things that has made my life rewarding.
This is the story of my life, but it is also a story about the resilience of people with disabilities and their families—and those who fight to make a difference in their lives. Above all, it is a love story as I define it to make the world understand that we can all learn from special children what unconditional love means. It’s also a love story about my life with Ellen, and how important it is to have happiness. It is a story that is important to me that I share with you, so thank you for taking this journey with me.