REMEMBERING JUSTIN – A CONVERSATION
Nadina LaSpina and Danny Robert

Nadina - The last time I saw Justin was at the NCIL (National Council on Independent Living) Rally at the Capitol on June 13, a week before he died. I had seen him the month before in the Russell Senate Building when he spoke at the MiCASSA kick-off to a hearing-room packed with 500 ADAPT activists. I was shocked at the change a month had made. He seemed so much weaker. His usually resonant voice broke several times as he spoke to the crowd, under a light drizzle, which soon after turned to pouring rain. When he was wheeled off the stage I held back and watched as the usual long line of people made its way to greet him. But Yoshiko noticed me and waved me over: "Look who's here," she said to him. And I went and hugged them both. Yoshiko asked: "How is Danny?" and, as usual, I explained why it would have been too hard for you to be there. Justin didn't speak. He smiled and that famous twinkle in his eyes, though still there, seemed to have melted into a softer, infinitely tender expression. He took my hand and held it for a long time even as other people came over to speak to him. It was when he finally let go of my hand that he spoke. "I won't see you again," he said softly. I chose not to acknowledge the meaning of those words. I quickly turned them around and said: "Oh, I'm sure I'll see you again real soon, Justin!" The rain was getting heavier and Yoshiko started wheeling him away from the crowd.  I cried out: "I love you, Justin!" as I waved goodbye and all around me others echoed: " Love you, Justin."

Danny - The first time I saw Justin was at our March (the Disability Independence Day March), in July '93. You and I and Jerry Nuzzi (DIDM co-chairs) and many others worked hard to make the '93 March a really great event.  I had only been disabled for 3 years -I became disabled in 1990, the year of the passage of the ADA- and I embraced disability rights as my new reason for living. Seeing Justin on the stage, bigger than life, with his cowboy hat and cowboy boots, hearing him speak of our ADA, exclaiming: “Halleluiah, I’m a human being!” while over two thousand people cheered was the culmination of a dream. When I heard him say our names, acknowledging our roles as “leaders,” it affirmed my new and proud identity, my happiness at being part of the disability community and also -since, working together we had fallen in love- our love for each other. I still couldn’t believe that I had come so far, from the initial feelings of despair and powerlessness at becoming disabled to ‘this’!  Justin had played such a pivotal role in my transformation. I had been speaking to Justin on the phone for about a year already; it was Justin who made me believe I could be a ‘leader.’  He, the father of the disability rights movement, gave me, a newborn crip, his home phone number, encouraged me to call him anytime…

Nadina - Justin took that title -father of our movement- very seriously, especially as he got older. He always made himself accessible to disabled people who wanted to be part of the disability rights movement. His home number was always available to any of us. One of Justin's greatest talents was to immediately see your potential and to nurture that potential in every way, to make it bloom into real leadership. No matter who you were, how little you had accomplished and how little you knew, he made you feel that you were vitally important to our movement and made you believe that you could be a leader and should be a leader. Whenever and wherever he made a speech he always asked for the names of the people that worked to make the event happen so he could name each one. He wanted us to feel proud of the work we did so we would keep doing more and more work.

Danny - Because the March was such a success, in the years to follow, I felt sure that Justin was disappointed in me for failing to keep up the momentum. But he never showed any disappointment. He knew we did the best we could. He always praised us for whatever we did and encouraged us to do more.

Nadina - Through the years we didn't always agree with Justin and at times we confronted him. We had a few confrontations during the health care reform years.

Danny – Yes, I remember in ’94, Justin, who had been a Republican, jumped on the Clinton bandwagon, and became the disability spokesperson for the Clinton version of universal health care, which many of us saw as an unsatisfactory solution. We wanted real health care reform. We both were single payer advocates and couldn't understand why our greatest leader didn't see it our way.  Remember? Justin invited us to go to the White House for one of Clinton's Health Care Reform events. You wouldn't go but I really wanted to. So you said: “If you go, at least make a statement. Interrupt and say: “What we need is real reform, Mr. Clinton!” I went but didn’t have the guts to do that. Afterwards, though, I confronted Justin. Because I was feeling very frustrated, I came on real strong. But Justin was not angry.

Nadina – When you disagreed with him and confronted him, he never argued against you, never tried to prove you wrong.  He always said: “I respect your opinion. I’m just doing what my conscience is telling me to do right now. And you should do what your conscience is telling you to do.”

Danny – Remember, in that same summer there was a Clinton Health Care Rally in Liberty Park, NJ.  Justin wanted us to be there, but that morning my attendant didn’t show up and you went without me.

Nadina - Yes, quite a few of us went from NYC though most of us were single-payer advocates. I got to the rally in a terrible state. I was angry because I didn't like what was happening and angry because of the attendant not showing up, not to mention worried because I had left you alone. As soon as he saw me, Justin asked: "Where's Dan?" "His attendant didn't show up this morning," I answered.  Justin, with a blank look on his face, said:  "So… is he coming?" Suddenly all the anger that had accumulated inside me came pouring out. "His attendant didn’t show up, Justin. That means he’s stuck in bed. Alone. He can’t even get his face washed, can’t get anything to eat… You, with all your money, Justin, you don't know the first thing about the real life of real cripples!" Justin took it all in. He kept nodding as I yelled. I later realized how my words must have hurt him. He was very aware that his money had insulated him from the daily hardships that most of us face.

Danny – Because he was so aware of the advantage his wealth gave him over most of us, he chose to live modestly and he used his fortune as a tool to advance the cause of disability rights. He traveled incessantly, to spread the gospel of empowerment.

Nadina - He was always there at every disability event - every rally, every demonstration, every ADAPT action… He was a strong ADAPT supporter, always called us soldiers and patriots. He may not have gotten arrested with us, but he always showed up in solidarity. After his heart attacks, when he stopped traveling, he would send his old fashioned wheelchair, his cowboy hat and cowboy boots (after his leg was amputated, one boot) and a statement which would be read to us. You could say it was a melodramatic gesture, and some would chuckle when the empty chair was wheeled on to the stage. But it was so wonderful for us to know that he cared so much, that he wanted to be with us so much. The empty chair was a concrete reminder of his presence among us, of his love for us.

Danny - I didn’t see him as often as you did because I can’t travel as you do. But the few times I saw him he made me feel so wonderful. I remember, at the Olmstead Rally in DC in ’99, the heat really made me sick (that’s what happens when you have MS).  I was reclined in my chair in the shade, totally out of commission, just listening to the speeches.  All of a sudden I opened my eyes, and saw Yoshiko’s face, bending over me to kiss me. I turned my head and Justin was right there beside me. Our great leader, the father of the ADA, the Martin Luther King of our movement, he had just gotten off the stage after making the most wonderful speech, hundreds of people were trying to get to him to give their regards, and he had come to me, he was taking my hand, he was worried about me… I felt so moved, I felt so important, I felt so loved…

Nadina – Oh, Justin really did love us, all of us. Some might have thought that all that talk about love – the “Yoshiko and I love you” at the end of every speech – was for rhetorical effect. But, no, the love was real. Justin taught us to always lead with love, never with ambition. He taught us the importance of love to our movement, to our culture. Love must be the bond that unites our community.

Danny – When he received the Presidential Medal of Freedom in ‘98, he sent each of us a replica because he believed that the Medal was ours collectively, that each of us deserved the recognition. He didn’t want to be singled out. He didn’t want to be seen as the hero. He called himself a soldier among soldiers.

Nadina - Yet he is our hero. Our movement really needs heroes and no one ever fit that heroic mold better than Justin.  In his cowboy hat and cowboy boots he’ll be forever the icon of our movement, forever part of our disability history. The lessons he taught us benefit all, disabled and nondisabled alike. The lessons he taught us in life about empowerment, solidarity, and love as well as the lessons he taught us in dying about death itself, which –just like disability – is not a tragedy, not an evil, but a natural part of life, full of mystery, majesty and profound beauty – these lessons we will cherish forever. Justin is our hero, and as he promised in his last message, he will “always be with us,” always urging us to “lead on!”