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Providing information, education, and training to build knowledge, develop skills, and change attitudes that will lead to increased independence, productivity, self determination, integration and inclusion (IPSII) for people with developmental disabilities and their families.

Ed Roberts, Activist

Russia

Ed Roberts' son, Lee Roberts, shares his recollections of an unforgettable trip with his father to Russia in 1992-1993, a surprising opportunity for a young teenager.

An Unusual Question

When I was in 8th grade I received a call from my father. After all the usual questions like, How's school?, How is your mom?, and You got a girlfriend?, he drops another one: Want to come to Russia?

He then explained that he was headed to Moscow for two weeks, and if I could arrange it with my school and my mom, I could join him. It was a surprising question, but one that this 14-year-old definitely wanted to hear.

I was as excited as a dog when you tell him it's time to throw the ball or go out for a walk! Both my school and my mother really had no chance—I was negotiating my way into this.

I remember having three main thoughts:

1) I get two weeks out of school (yes homework, but homework in Moscow, which got me thinking about #2).

2) I can do my homework on a tank.

3) I can play Frisbee in the Kremlin. I ended up going 1 for 3—still a good batting average for a clearly naïve kid. So here we go, we're off to Russia.

Traveling with Dad

Oh my god, what the hell is that? — Airport security, upon seeing Ed's wheelchair

A story about going to Russia with my father would not be complete without describing what it's like to actually get him there (or anywhere for that matter). Our success in traveling to Russia, and on all our other trips, was due to people helping people, with synergistic collaboration. To get a better understanding of how unique his worldwide travel needs were, visualize this scenario …

You are an airport gate person checking in passengers. All seems normal and you're putting "Jen" in seat 3A and "William" in 38C. In the distance (down the gateway), you hear a strange noise. To you, it sounds like someone is driving a motorcycle in the airport. It gets louder as it gets closer. You finally see it. It's definitely not a motorcycle – it's a person … in a behemoth-like blue chair that has chains on both sides and he's headed straight for you!

My father's chair weighed around 700 pounds and was propelled by four car batteries underneath his seat. The batteries made the chains move and also supplied power to his ventilator that was above those batteries. (As far as the ventilator, Dad would joke to me that he should have been the back-up voice to James Earl Jones as Darth Vader.)

Now, airport security in the 1980s and 19902 wasn't what it became after September 11th, but we still needed to get through with: a big, boxed ventilator with a hose; extra tools and hoses; and car batteries … as carry-on items.

And that was the easy part. Next we needed to get Dad's wheelchair (with more batteries) into the bottom of the plane for storage. If airport security or the baggage handlers tried to move the chair themselves and accidentally pressed a certain button, the chains would lock and the chair would become almost impossible to move. In fact, I've sat in a window seat watching baggage handlers try to push this unmovable 700-pound object; it can be very unnerving because, if it breaks, Dad is without transportation. So to get Dad's chair loaded, his attendant was escorted to the security elevator and brought outside to the plane to assist. We had learned from past experience that no matter how many times we tried to tell security, if my father's attendant wasn't there, those chains always ended up getting locked.

When we finally arrived at our destination, of course, we had to repeat all the same steps with new airport security officers.

In the end, the security personnel and flight staff saw that we were no risk. My father's charismatic explanations of the necessities of his life, and his fantastic traveling attendants precise knowledge of every step, actually served to train security and flight crews, making good ones even better. Plus, my excessive flirting with the pretty flight attendants (all of them were pretty to me) definitely eased any concerns that we were a danger.

While there were obstacles to traveling with Dad, as one of my father's good friends Tony Johnson once told me: Obstacles are what you see when you take your eyes off the goal.

Moscow

This is Russian military suit for 15,000 rubles. You buy, yes?

When we arrived in Moscow, we weren't greeted by a tank escort, so getting my homework done on a tank (or at all, in my mind) was looking doubtful. Dad, though, would see to it that I did my homework. And he had help in this mission from his awesome traveling attendant Jon Oda. I looked up to Jon as a smart, athletic, Hawaiian-looking surfer guy who did his job well, loved my father and attracted beautiful women. Jon was always at my father's side and always willing to put up with me, which takes special talent.

Tony Johnson had also come with us. Tony was a karate black belt and a former Marine who had developed an incredible way of teaching self-defense to people with disabilities. Tony had taught my father, and was coming to Russia to teach others. With biceps as big as my legs, Tony also helped keep me in line.

Airport security in Moscow may have been the KGB, as they watched with a very close eye and apparently were monitoring us for our entire trip, although we didn't realize it at the time. That makes sense. My father was a political figure and he was coming to a big international conference on disabilities.

From the airport, we were escorted to a Mercedes bus much larger than we needed, even with a 700-pound chair. We were taken to the "Hotel International," which, I thought, with a name like "Hotel International" must be on par with other internationally known places like The Waldorf Astoria, The Plaza Hotel or The Regent Beverly Wilshire from Pretty Woman. Sadly, I was wrong, as I could tell from one look at the crumbling exterior.

Outside the hotel were multiple black Mercedes stretch limousines with smaller Mercedes cars around them. It looked like we were pulling into the Academy Awards, and my dad was the star. Wrong again. Tony had asked one of his former military friends living in Russia to greet us, and Tony's friend quickly explained that it wasn't Tom Cruise in the limo—it was the Russian Mafia. Yes, our hotel was one of the biggest Mafia hangouts in Moscow.

As we entered into the lobby of the hotel, we were told by hotel security that less than 24 hours earlier there had been a Mafia shootout in the lobby of the hotel. There were bullet holes all over the walls. I was getting nervous, and as I was inspecting the holes, my father said, "Hey, don't worry. That's nothing. I could make a bigger hole with my chair."

Over the next few days, all of us were introduced to a post-communist-turned-capitalist society. One morning we were coming down for the conference, and as my father went to the front desk, my arm was grabbed. Pulling my arm was an older-looking Russian bell-hop/courier. He was nudging his head to an open door on the side of the lobby with two other guys, one in military dress. So what could I do? I went with him. I entered the side room, where I found myself alone, with a single chair, in an otherwise empty space.

Naturally, I was scared. What the hell is going to happen? Live Russian QVC Channel is what happened. I was suddenly the target of a sales pitch from a hotel bellhop, a guy in a Russian military uniform, and some guy dressed in Navy-like white clothing.

When Dad noticed I was gone, he was pointed to the side room, and he bull-dozed through the door with his chair—so now we both were involved. The salesmen brought out Russian coins, clothes, statues, artwork, and finally an authentic Russian military uniform, which my father bought! Russian rubles were highly devalued, and that military uniform was special. (On a side note, I later dressed up in that uniform to give a presentation on Pearl Harbor in my history class and received an A. (There's some irony.)

Throughout our visit, we continued to be bombarded with people trying to sell us things. It was like nothing I had ever seen before.

Despite an interesting start to our trip, I soon found I needed to find activities to occupy my time while Dad was at the conference. Jon Oda had taught me to play Frisbee; I loved it and my father loved that I loved it. Jon was really good at Frisbee, and I practiced with him as much as he would let me. One day Jon and I decided to play Frisbee in our 25th-floor hotel room, which was not luxurious, but was spacious—the size of three rooms put together—and open. Jon had all of these special "trick throws," throwing the Frisbee upside down, under the legs, etc. The one I really liked was the "no-look" throw where you caught it facing away and throw it in the direction it came from. Well, we were playing in the room and I went for the no-looker. I turned around just in time to see the Frisbee bounce off the open window and disappear. Jon yelled "Oh, !&@!," and looking out the window, John bobbed his head, as when you see something hit something else. Jon then turned around, sat down, and said, "Lee, you just hit the damn Mafia limousine man."

So Jon went down to the lobby and walked out to the limo; the limo window rolled down. A man that Jon couldn't see handed the Frisbee out the window, and Jon grabbed it. My errant Frisbee toss could have ended up really badly, but in the end, I was able to laugh and say, "I fought the Mafia and won." Needless to say, Moscow provided both my father and me with unique experiences that we either shared together or that made him cringe when hearing about them afterwards. Even so, I don't think any of that could have prepared him for what happened in St. Petersburg.

St. Petersburg

A sign from above

When my father traveled up to St. Petersburg, he had the opportunity to visit a monk temple, of which there were several there.I can hardly imagine what the monks thought of that massive, loud wheelchair in their quiet world, but fortunately, there was a sign from above: A bird chose my father as a target and pooped on his forehead. Even more to our surprise, the monks then turned toward my father and began praying. Apparently, they viewed the bird pooping on my father as a religious sign, and they prayed to him.

Sometimes it's the person no one imagines anything of that does the things no one can imagine. – Alan Turing

Whether getting through security, loading car batteries, flirting with flight attendants, hanging with the Mafia or witnessing a spontaneous prayer, traveling with my dad always had something special to offer. I hope everyone reading this has enjoyed this very personal story because I'm proud to share it with you. My father is a hero to me, I miss him every day, and I'm so proud to be a part of his life that helped so many lives.

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