Wednesday, November 08, 2006

October, 2006


I am not a fearful person. Fifty five years of living as a person with cerebral palsy has taught me that to live and experience life one needs to be willing to take risk. It is not that I believe in living carelessly for the thrill of excitement, but I do believe there is an element of risk in everything we do in life. I believe that a person can take risks and still safeguard personal safety. With a touch of wisdom, caution, and good planning, one can lead a fulfilling life free from fear of the unknown.

But what happens when all the wisdom, caution, and good planning is yanked out from underneath you and you have nothing but instinct and the will to survive. The world can quickly become a scary, lonesome place in a second of time, It can happen to the best of us.

Several months ago I was hired by People First of California (PFCA) as a Program Coordinator of the Self Determination Project. I live in Vista, CA, 40 miles north of San Diego, and my employer, PFCA, is based in Sacramento. My job responsibilities include leading a team of three other people in developing a training in Self Determination and a new program called the IPP Buddy System. Once the team developed the training materials, we traveled to different People First chapters around the state to present the training to individuals who have developmental disabilities. Self Determination is a concept where an person with a developmental disability becomes a strong self advocate and learns to take responsibility over all the aspects of his/her own life. The IPP Buddy System pairs up a strong self advocate with a self advocate who needs support in advocating for the wants and needs in his/her annual individual personal planning meeting.

When I was interviewed, I was told there would be traveling involved with this position and asked if that would be a problem. I said “no,” for I have done a great deal of traveling alone---Ohio, Rhode Island, Florida, Washington, D.C., and Hawaii. I like traveling and am well versed on travel procedures by plane and train. Though I had never traveled long distance by bus, I had used the local public transit system. Certainly, I could handle traveling throughout California. So I thought. I had never gone to Ukiah, and now that I have been, I hope to never go back. Don’t get me wrong---some of the nicest people I ever hope to meet live in Ukiah, but the trip there and back turned into a major life experience. One I never want to repeat.

My trip to and from Ukiah was a nightmare. I drove from Vista to Orange County Airport to fly to Oakland. Some how the Super Shuttle reservation from the Oakland airport to the Greyhound station got canceled and it took two hours to get a ride, because they had to call a driver in San Francisco who had to pick up the ADA van. I missed the Greyhound bus and the next one was not until 11:40 p.m. and they could not tell me if it would have a wheelchair lift. And they couldn't tell me WHEN they would be able to let me know. In my research of this trip, I knew there was an Amtrak train to Martinez and an Amtrak bus to Ukiah. I called Amtrak---the train would leave at 1:45 pm and yes, the bus leaving for Ukiah had a wheelchair lift. The shuttle showed up at 1:15 and I told him I had to catch a 1:45 train at Amtrak. He took his sweet time gabbing with another driver and then halfway there he decides to stop for gas. I was having a fit, so he finally said if I missed the train, he would drive me to Ukiah. We walked into the Amtrak station and the clock over the desk said exactly 1:45. I was convinced I had missed the train, but the guy behind the desk said it was a couple minutes late. He sold me the ticket and I caught the train as they made the last call. In Martinez, I went to get on the bus, only to be told the wheelchair lift did not work. I must have had fire in my eyes as I said, "You've got to be kidding!" There was another bus there with a lift, so the drivers traded buses. When the driver put me on the bus, I said I WOULD SHOW HER HOW TO TIE DOWN THE SCOOTER. All of a sudden we were on the road and I was not tied down. As I struggled to remain upright, a passenger asked if I wanted her to tie my scooter down. She did, but one tie was not tight enough and I tipped half way over slamming into the side of the bus. The passenger who tied down the scooter grabbed me and pulled me upright again. She yelled to the driver that I had fallen over, and the driver yelled back that the other driver had told her that it was not necessary to tie my scooter down since it was so heavy. I yelled back, "No one asked me!" I suggested she put the other driver in a scooter and take him for a ride without being tied down!! Another passenger adjusted the tie down straps, but the driver never stopped to check them or me. On the way to Ukiah, the driver had to stop a couple times for gas and radiator water and to let passengers use the restrooms---the restroom on the bus was out of order. Originally, I was due in to Ukiah at 4:05 p.m. and Dial-A-Ride was picking me up at 4:30 pm. I had to cancel that ride and was told to call when I arrived. However, they close at 7 pm. The 3:30 bus from Martinez to Ukiah was due to arrive in Ukiah at 5:55 p m. We arrived at 7:10 p.m. I was stuck at Burger King--- a mile and a half with no ride to the Hampton Inn. I had studied the Yahoo map, so I had some idea what my route would be. I confirmed it with the kid behind the Burger King counter and started out into the dark night.
I soon decided I would kill myself on the sidewalks that ended, slanted, narrowed, and had no curb cuts. I felt safe in the street, which was wide and not heavily traveled, and for the most part, was well lighted. I entered the Hampton Inn and exclaimed, "I made it!" The clerk assured me I had and then proceeded to tell me the reservation Becca and Mike made two months ago was not in the computer. With a phone call and a little help from Mike, Becca and I were given an "accessible" room. The room was beautiful and so was the bathroom, except for one thing---the tub. It had grab rails and a bench. Normally this would be great, but the bench was at on end of tub and the shower controls were at the other end of the tub. Does anyone reading this have arms 5 to 6 feet long? I don't and the tub was too narrow to place a stool or a chair inside it. It was useless to anyone who could not stand. The next night I was put in a room with a roll-in shower, but the same design prevailed. The roll-in shower had a hand held shower head, but the cord was long enough to reach to the back of the tub where the bench was. However, a patio chair could be placed inside the shower.

The return trip was traumatic to say the least. I left the hotel at 9 am Saturday and got home 4 pm Sunday. Amtrak sent the bus with the broken lift that had to be traded on Thursday to get me to Ukiah. The bus driver made a call on his cell phone and I heard him say that the compartment door to the lift had been frozen shut for at least a week and he had reported several times. When the call ended, he told me they were sending me a cab. I asked what that meant, but he walked away, got on the bus, and drove away leaving me in the Burger King parking lot.

I was determined that I would not sit there and wait for nothing to happen. I called the Amtrak 800 number and got an operator that simply did not want to deal with me and told me I would have to call back. I talked to the Burger King manager and one of her employees called Amtrak and after a period of time she came and handed me a cordless phone. I found myself on a three way call with someone named Marge, who sounded male. He explained that there was a bus coming through Ukiah on the way to Martinez, but it didn't have a lift. I asked him what he was trying to tell me. He said I would have to wait until Sunday morning to get a bus. After I threw a fit, explaining I was sitting in a Burger King with no place to stay, it was decided to switch buses in Ukiah with the bus going to Eureka, which had a lift. I was to leave Ukiah at 10:20 am and did not leave until 2:50 p.m..

That put me 4.5 hours behind schedule. I had to reschedule the 3:10 pm train from Martinez to Oakland for 6:40 p.m.. My 6:50 p.m. flight from Oakland to Orange County was the last flight of the day and had to be rescheduled for 9:50 am Sunday. Of course the shuttle from Amtrak to the airport also had to be canceled. I got to Oakland around 7:35 pm. I had no idea what to do or where to go. The guy at the Amtrak desk gave me a bus voucher and the bus outside the station took me downtown to the Bart --- the subway system. I took the elevator down---a talking elevator at that. The lady at the Bart info booth helped me buy a ticket out of a machine. She pointed to the elevator and told me to get the Fremont train. Subways can be scary and I was nervous, so I jumped on the first train that stopped. For some reason I instinctively knew I was on the wrong train going the wrong way. I asked a passenger where I was going and told him where I wanted to go. He told me to get off and take the next train to 19th street and transfer to the Fremont train. When I got off, I met a woman with a cell phone and bike who told me to get the Dublin train and it would take me to the Coliseum/Airport stop without transferring. She was right. I got off and was greeted by a Bart info person. I told him my situation and he said the bus outside would take me to the airport, but not hotels. He said I needed a hotel shuttle with a wheelchair lift. I laughed---hotels don't usually have shuttles with wheelchair lifts. He then said I may have a problem finding a room since many people were coming in Saturday night for the Raiders game on Sunday. He made a list of hotels and phone numbers. The first one I called had an available accessible room and a shuttle with a wheelchair lift. They came and got me and the room was big, gorgeous, and the best bathroom and roll in shower I have seen in quite a while. I had not eaten since 1 p.m. and it was after 10 p.m. when I got to the hotel. The restaurants at the hotel and across the street were closed, so the guy at the desk sent someone to the kitchen to make me a turkey and cheese sandwich with a glass of cold milk. Their shuttle took me to the airport in the morning..
I teach social skills and try to encourage people to be cautious when seeking out strangers for help. It is best to ask people who are working and are a recognizable authorities—policeman, bus drivers, and mail carriers. If there are no people of authority, choose someone from a crowd of people, so if there is a problem, there will be others to help. In my case, it was only through the “kindness of strangers” that got me to a safe place to spend the night in a strange town and the ability to safely return home.

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