The Roving Activist’s Blog

Arlene left us on June 1st to take a job as Executive Director of Mercy Outreach Center, a clinic for people with no health insurance. It’s a dream job for her that she’d wanted for a long time. I’m going to miss her. She was a good mentor to me. Fortunately, Arlene will still be a member of our Public Policy Committee. Now, I know that I have to step up! Best wishes in your new job, Arlene!

Meanwhile, we have hired a new Systems Advocate. Terri Lincoln is from Ohio, and has done some advocacy work. She is a young woman who uses a wheelchair due to a spinal cord injury. She and her fiance were moving to the Rochester area anyway, as he will be teaching at SUNY Brockport. I think that Terri will do well with us.

Yes, I know, its been quite a while. I try not to get so busy that I go for long periods without posting, but, I have been really busy. So much has happened in the past three weeks that I don’t know where to begin, but begin, I will…

The week started out kind of yukky, but ended rather nicely. Monday, I was sick with a bug that kept me in a certain part of the house all day. Needless to say, I did not go to work, though I did make the attempt. I called Chris to let him know what was going on, and he told me to take a sick day, and stay at home. Arlene called me later to see how I was doing. I thought that was rather sweet of her to think of me.

On Tuesday, I felt somewhat better, so though I was still a bit weak and feverish, I decided to go to work. I took my time, though, and made it in at 11:00. While checking my e-mail, I saw a message from my friend, Gwen. She was actually on her way up with the rest of my stuff! Of course, I was happy. I’d been living a rather Spartan existance, and looked forward to having my things, so that my place would be less like a bare loft, and more like home. Arlene offered to help unpack when Gwen came. I graciously, and gratefully accepted!

Wednesday was Pi Day. You know, Pi — the circumference of a circle — 3.14 something something something all the way to infinity? Sorry folks, though my head is filled with facts and factoids of every description, it does not include the value of Pi greater than the first two numbers beyond the decimal point. I leave that to the true numbers enthusiasts.

Anyway, Gwen called on the stroke of eight to say that she was 30 miles outside of Rochester, and would call again when she got to my place. I left a message for Chris on his cell phone, telling him what was going on. He had left for Albany on Monday, and would be there all week.

At nine, Gwen came, and we got right to work. She had packed her son’s truck full, and had brought along a dolly. We wanted to finish as soon as we could, because although we had enjoyed two days of nice weather — Tuesday was especially nice, almost summerlike — the temperature was supposed to drop, and we would be beset with rain, that would later turn to snow as the temperature dropped further. To be sure, we were under a tad bit of pressure!

Arlene called to see what was up, since I was not yet at work, and I told her that Gwen had arrived, and we were unpacking. She came over immediately to help out. Between Arlene, Gwen, and a gentleman who helped us with the last of the stuff, we finished literally minutes before the rain started. Gwen, Arlene, and I had a spot of breakfast at Pleasant Bunz, the little deli on the first floor of my building. David, the owner, is a really nice guy; he and I have had several good, long, talks over the months.

Gwen wanted to check out the Volunteers of America thrift store to see if they had any decent furniture, so Arlene took me to work. Later, Gwen came back, and I gave her a tour of the building, and introduced her to some of my colleagues.

Gwen had no luck at the VoA. Their stuff was quite expensive. Gwen, however, is quite the networker, and she managed to talk to the store manager, who told her about a place called Friends Helping Friends. After hanging out with us for a while, she went to check them out, and said that she would be back at 5:00 to pick me up.

At 5 on the dot, Gwen was back. She told me that she had bought me a table, a desk, and a couple of chairs, and the folks at Friends Helping Friends would be by at 9:30 tomorrow to deliver them. We then went to Wal Mart to get some groceries, then, we headed home. I needed to do laundry, so Gwen helped me with that, and meanwhile, we unpaked my clothes, and put them away. We then, unpacked some other knick-knacks, and put up the food. Gwen had brought me an air mattress and pump so that I wouldn’t have to endure the thin mattress that had served as my bed any more. We set it up, and it was huge, and quite comfortable! By the time we had dinner, and finished most of the laundry, it was late, so we hit the sack.

Thursday, the Ides of March. The day that certain members of the Roman Senate said, “To heck with this!”, and offed Julius Caeser for his excesses. Really, he should have listened to his mama, and the person who sent him the note. Perhaps, he’d have lasted a tad longer.

Anyway, I got off to work, while Gwen waited for FHF to come with the furniture. I finished a couple of reports, and set up an event that I’ll post about later. When Gwen came to pick me up at 5:30, we swung by FHF to pick up a couple of things and to meet the folks there. They are very nice, and FHF seems to be a grassroots operation.

Once home, we finished up the laundry, then, wiped down the furniture and set it up. We unpacked more boxes of stuff. By 11:30, we had unpacked everything save for a few boxes of books and ADAPT stuff, which I stored in the tidy little nook in the hall by the kitchen. We then went to bed, since Gwen had to get an early start to go back home. Since she would be gone before I awoke, I gave her a hug, and thanked her for all that she had done. She is a real friend!

Friday, I had a couple of meetings. One was with Jamie Penlon and Bill Beideck, from Monroe Ambulance. In addition to normal ambulance services, they provide medical transportation to people with disabilities and seniors to doctors appointments and the like. They were reaching out to us because they had encountered some problems with some of their clients, and wanted out help in coming to a solution. Several of their clients use motorized wheelchairs, and are terrible drivers, ramming into walls, the sides of the vehicles, and even other people! The folks at Monroe Ambulance wanted to be sensitive to these folks, and not seem demeaning, but something had to be done. They asked if it were okay to steer the person’s chair, themselves. We felt that as long as they asked first and explained the consequences if they refused, that would be fine.

Another issue that they wanted help on was people who were allegic to service animals. They wanted to know what they could do about that. We explained that under the ADA, those folks would have to be accommodated by having them ride alone, or with someone who did not have a service animal. The person with the service aniaml ould not de denied a ride, so that seemed to be the best solution.

I asked a question on behalf of a consumer whom I have been working with. I wanted to know if a person who was able to, has the right to fasten their seat belts, themselves, or was it required that the drivers do this. Jamie and Bill told me that if a person wanted to, they could fasten the seat belts, themselves, and if they were in a sedan, and wanted to shut the car door themselves, they could. I was glad to hear that, and explained that the consumer with whom I’d been working felt strongly about that. Indeed, she felt that it was an affront to her independence if she were not allowed to do these simple things, herself.

The meeting went quite well, and Monroe Ambulance would like for me to do some disability sensitivity training for their drivers. I am looking forward to workig with them.

I then had a meeting with a gentleman named Lane, who had pushed me home one incredibly snowy day. He had written about me for a class that he is taking, and wanted to interview me for a follow-up report. he is taking classes at the Damon Campus of MCC to be a paramedic. Lane wanted to know how he could get more involved in disability advocacy, so I took down his e-mail address so that i could keep him abreast of what is going on. I asked Lane if he knew if the Damon Campus had an office that served students with disabilities. I told him that we also speak to college classes, so he is going to check with his instructor to see if that is something that he would be interested in. Lane will drop back by in two weeks to give me an update.

I made it home, and really marvelled at how homelike my place has become. its all beginning to sink in. I called Time-Warner because my Internet was down, and though it took over an hour, they got the cable modem working again. I relaxed, and watched a DVD, then, went to bed for a while before getting up in the wee hours of the morning (Saturday, St. Patrick’s Day), to make this post. Happy St. Patrick’s Day to all!

Our local newspaper, the Democrat and Chronicle, publishes short thank-you’s from readers to individuals who have done kind deeds to, or for them, as well as businesses or agencies that have done positive things of note. These appear almost every day on the Letters to the Editor page under the title of Pat on the Back. A month ago, the D&C printed one from me. Here it is:

Democrat and Chronicle

February 4, 2007

Pat on the Back

Two gracious men help to beat snow

I was able to get to work on Jan. 26 thanks to two strangers. I have been pushing my wheelchair in the street to get to the bus stop. I must do this because the businesses in my area won’t shovel the snow off the sidewalks. This day was especially difficult because the streets were not cleared. As I struggled down the middle of St. Paul Street, a man ran to me and gave me a push to the bus stop. I caught my bus, but upon alighting, I found that I could not get across the street because of the snow. A man appeared and helped me across the street, and into my office. I want to thank these two kind gentlemen for helping me. I don’t know what I would have done had they not appeared in the nick of time.

Anita Cameron
Rochester

The weather is still cold here in Rochester, or shall I say Rawchester — after all, it’s been quite cold and snowy here! It seems that this fair city is known by many names: The Roc, Roc City, Rachacha, even the Nation of Rochester. This city is interesting and sometimes confusing. In some ways, it is very progressive, and cultural, with such great entities as the Rochester Philharmonic Orchestra, the Eastman School of Music, and a host of cultural events and festival, including the famed Jazz festival. Then, there is the fear of those who live in the suburbs of the city, and those of us who live here. To hear them talk, we live in a war zone, where we dodge bullets at every turn, and where there is some shady looking character with bags of dope and contraband of every description hanging out on evey corner and doorway trying to sell to any child who happens by. Then, there is the blatant and coded racism that almost makes me think that I am somewhere in the Deep South. It’s weird.

Overall, I like Rochester, challenges and all. I especially love my job, and it seems that my colleagues like me, as well. I compiled a report of my progress, and it seems that I am doing well so far — I have achieved a score of 40 out of a possible 100. This is 100 points for the entire year, and since I have been around only three months, a score of forty at this early date is pretty good!

One thing that I want to improve on is my sign language skills. I used to be pretty good, but you know the saying — if you don’t use it, you’ll lose it. My vision has gotten worse, so its harder so see the signs and to learn them. My goal before the year is out is to check into some sign language classes where the instructor is willing to take a bit more time with me due to the visual impairment. I feel stupid when I am around my Deaf colleagues because I can barely make myself understood.

In the meantime. I am trying to get more involved in my neighborhood, and waiting for spring to come. I have been told that springtime in Rochester is to die for. We’ll see…

Today is awful — we’ve gotten over TWO FEET of snow, and there’s plenty more to come! It’s been snowing steadily for almost 24 hours with no end in sight. Of course, what we’ve gotten is a far, far cry from what they got slammed with in Colorado last month, or what our neighboring county here in upstate New York got dumped with last week.

Still, this is a far cry from the weather that we had when I first moved here. There was a dusting of snow on the ground that chilly, but sunny Monday, November 20th, my first day of work. I was picked up by Liz, one of my colleagues, and taken to the office.

My goodness, the office was HUGE. Liz took me to Chris’s office, and Chris and I chatted for a while. Then, he took me on a tour of the building. Wow, the place is big! It is the biggest CIL that I have ever been in, bar none. It took me several weeks before I learned my way around and stopped getting lost.

One important thing I did that day was to visit the loan room, where I traded in the venerable hospital johnny for a sports chair. So far, it is serving me well, and I am grateful to have it.

The next day, I took the bus to work, and learned about the horrors of the bus system. It is utterly confusing, and the majority of the bus drivers clearly don’t like people who use wheelchairs getting on their bus. I won’t go into any further detail because I’ll have plenty more to say about them in other posts.

I spent a couple of hours at work, then, my colleagues, Dean and Arlene, drove me back to the hotel to pick up my stuff and take it to my new place. We met Carol, the manager there, and she gave me the keys, and took me up. The maintenance guys were just finishing things up, and they lowered the shelves in the closet, and did a few other things.

Carol had some bad news for me. Although I had set it up to be done over a week ago, the electric company had not been over to turn on the electricity and heat. We called them, and they told us that they would be over tomorrow. Arlene went home to get me some candles, and I bundled up against the cold and settled down for the night.

An hour later, Chris called to see if I was ok. I told him that I was fine, but there was no heat or light. Not long after I hung up with him, Bruce called. He was flabbergasted that I had not heat or lighy, and came over immediately and took me to a nearby hotel. It was a nice one, and the staff were very nice.

The next day, I came in, and spent my first full day at work. Since this was the day before Thanksgiving, Bruce invited me over to his mother’s house, where the family would gather.

I took the bus home after work, and had a bad experience — I was cursed out by a bus driver because I asked to get off at the wrong stop. Needless to say, I wrote the incident down in my log, and reported it the following Monday when I returned to work.

When I got home, I found that the electric company had not been there. I called, and they told me that when they called the manager to say that they were coming, they got an answering machine, and their policy is not to leave any message. The problem is that the managemnt’s phone system is set up so that a recording comes on, then, you enter the extension, then you talk to the manager. Unfortunately,between the management’s policy with the phone, and the electric company’s policy I wasn’t getting any heat or light. Finally, I called the after hours line at the electric company, and was told that I had electrcity at the meter, but someone had to come out and turn it on at the breakers. I then called the emergency maintenance department at my building, and someone came out, but he was very unhappy about it, and yelled at me when between him and the electic company, they couldn’t help me. When Bruce called to see if I was ok, I told him what happened, and he booked a room for me at the hotel where I stayed the previous day. Since the hotel was very close to my house, I wheeled over. Bruce said that he would get one of the IL specialists to call the electric company on Thursday and get them to turn on the heat. Meanwhile, he booked the room for three days.

On Thanksgiving, Bruce came and took me to his mum’s house. As it turned out, she was none other than Norita, who worked in Human Resources! I liked Norita a lot; we hit it off pretty quickly. I had a very good time. The food was good, and I met Bruce’s family. A coupleof colleagues came over as well.

Friday, I did not have to work, so I waited for the call from the electric company. The day before, my colleague, Sadie, an IL specialist had called the electric company and insisted that they come over on Friday, instead of making me wait until Monday to turn things on. I received a call saying that they would be over, so I went home, and waited, and within an hour, the lights came on. Boy, was I happy! I spent the rest of the day unpacking my things and putting them away, then, I went to the store across the street called World Wide News. They have an amazing collection of newspapers and magazines from around the world. There is also a deli there, and they sell groceries and beer, as well.

I spent the rest of the weekend settling in, and getting to know my neighborhood. I visited the Midtown Mall, a place that has been around for longer then I have been alive, and I found the Family Dollar. It has since become a lifesaver for me, where I get all of my cleaning and household goods. Many of the days ahead were almost balmy, with temperatures in the 40’s, 50’s, 60’s, and even the 70’s! I, and everyone else was marvelling at the mild winter that Rochester was experiencing. We had a green Christmas, which I spent with Dean, my colleague, a Deaf Systems Advocate. Several of his friends came by, and we had a good time. The next day, we got some snow, but it soon melted, and we got some more warm days. Unfortunately, they were not here to stay, and by the second week in January, we got quite a bit of snow, which was beginning to melt by now, but we have since been hit hard, and I don’t think that this is going away for a while.

Saturday, November 18, started early enough. I really hadn’t gotten any sleep to speak of since I’d spent the entire night packing the last of my things, and still had not finished. In some ways, this move was like the move to DC — I’d found a place, sight unseen, and had started packing almost as soon as I’d gotten the job offer. In other, more important ways, it was quite different. It was the first time that I had basically no help in packing, hence the last minute scramble. It was also the first time that I was moving flat broke, as I hadn’t worked in a while, and was living off of my savings. Recent identity theft had plundered almost my entire savings, forcing me to dip into my retirement fund, nearly depleting it. The tribulation I’d gone through trying to get that money left a bad taste in my mouth, and a fervent prayer that my next retirement plan did not come from a certain company catering to teachers.

Another difference was the stress level associated with this move. For a long time, things were up in the air — where would I get some cash? How would I get my stuff up to Rochester? Indeed, how would I, personally, get there? In desperation, I’d called several agencies in Washington, DC, and in Rochester, and learned what it’s like to live between the cracks. No one in the District would help me since I was moving away, and no one in Rochester would help, since I had not yet arrived. Eventually, I decided that it would be of no use wasting precious energy stressing over things. I have always been blessed with a peculiar sort of luck — or looking after by the Creator — things always had a way of working themselves out for the good when it came to me, and fortunately, this time was no different. My friend, Gwen offered to drive me to Rochester, and to pack as much of my things as she could into her small pickup truck. She also volunteered to help with the last of the packing. Great! the last pieces were falling into place.

By mid-morning, Gwen arrived with breakfast, and we finished packing, and loaded what we could on to the truck. I was grieved that I would not be able to take my TV, or DVD player or any books or tapes or other small comforts, such as my hand made stuffed animals, but there was room only for the necesities — clothing, my computer (thank goodness!), some bedding, my dresser, my toiletries, and whatever would fit in my knapsacks. We also took my microwave, and my guitars. The things that were left would be stored at my neighbor, Shonda’s apartment, and at Gwen’s place. Shonda came to help out, and to see us off. I called my mum, my sister, and a couple of friends to let them know that I was finally on my way.

Everything started out all right, but as we pulled on to the highway, one of the blue bins of clothing fell off of the truck. Gwen stopped, and gathered everything up, and we continued on our way. The ride was pleasant, and we learned much about each other. Whenever we stopped for gas, Gwen would check to see if everything was ok with my things.

At 10:00 pm, we finally arrived in Rochester. There was a chill in the air, but it wasn’t really cold. I was surprised, as I had heard about the legendary cold and snow that usually afflicts Rochester at this time of year. Gwen wanted to stop by my apartment to at least see what the area looked like before we went to the hotel. Arrangements had been made by Bruce, our Executive Director, for me to stay in a hotel from Saturday until Tuesday, when I would move into my apartment. We drove around the downtown area until we found my place, but we couldn’t see much in the dark. Gwen stopped to do a last check on the luggage. It was then that we found out the worst – my wheelchair was missing! I don’t know when it fell off but I remember that a couple of hours before, I’d heard a sound like a small rock hitting the truck. I remember discussing it with Gwen, but we both came to the conclusion that the sound was perhaps due to a rock, or something. In hindsight, that may well have been when the bungee cord snapped. We would later discover that the microwave oven was gone, as well.

Needless to say, Gwen felt terrible. Oddly, I was calm about the matter. My feeling was that Gwen had gotten me here safe, and in one piece, and that really was all that mattered. Looking back, I think that the reason that I was so calm was that I felt that once again, things would work out fine, as they always seem to, for me.

We made it to the hotel, checked in, and unpacked all of the smaller items. Then, Gwen went to get us something to eat. After about an hour, she returned with fruit, cereal, frozen dinners, milk, and juice. We ate, then, planned for tomorrow. Gwen had spotted an ambulance station, and wanted to stop by in the morning to see if they knew of any medical supply stores where a wheelchair could be had. We then got ready for bed, since Gwen wanted to make an early start. I curled up in bed with some comfort and consolation that I had managed to stow all of my CD’s and CD player into the knapsack that I usually kept on the back of my wheelchair, and had had the presence of mind to place it inside of the truck, at my feet. Thank goodness, that knapsack had not been lost with the wheelchair, or perhaps, I would have been inconsolable, as the music was one of a couple of small treasures that I had managed to bring with me.

Sunday dawned cold and snowy. I marveled at the weather change that had taken place during the night. Gwen was gone to get gas, and to find the ambulance place. I took a shower and dressed, and by the time I had finished, Gwen was back — with a wheelchair! Granted, it was a hospital johnny, a type of manual wheelchair used in hospitals and nursing homes, but it was far better than nothing. I asked her how she’d come by it. Gwen, who is a very spiritual, faith-filled woman, explained that she had prayed all morning to find a wheelchair, and when she stopped for gas, she noticed that the man at the gas pump next to her had on a clerical collar. She waited until the man had paid for his gas, and when he returned to his car, she stopped him, and explained what happened. After hearing her story, the man, who was a pastor at a nearby church, told Gwen that he indeed had a wheelchair that she could have, and invited her to follow him to his church, where he got the wheelchair, and loaded it into the truck. I was truely amazed by this, and very thankful!

We then got the rest of my things into the room, then, called Chris, my boss, to let him know that we had arrived safely. Of course, we told him the story about the wheelchair. Afterwards, we ate breakfast, then, Gwen prepared to leave so that she could make it back to DC at a decent hour in order to clear out a couple of things and turn in the keys. Her plan was to come back up on Tuesday with the rest of my things.

I saw Gwen off, thanking her many times for bringing me up. She still felt bad about losing the wheelchair and microwave, but I told her not to worry; what mattered was that we both were safe. As she left, she gave me some money to get me through the next few days. Since I was flat broke, you can imagine how grateful I was!

I spent the rest of the day relaxing and getting used to the idea that I was in Rochester. If there was any city with an ADAPT chapter that I wanted to be a part of, it was Rochester, and now, I was here! I kept pinching myself to make sure that I wasn’t dreaming. Finally, I went to bed. Tomorrow would be my first day of work — and the first day of my new life.

Folks, its been a while, but I am back! Yes, it has been well over two months, but I have been quite busy with the move, getting used to Rochester, arranging for my home Internet access, and of course, doing lots and lots of activism and advocacy!

Since its been such a long time, I am going to use the next few posts to fill you in on what has happened in the intervening two and one-half months — the trip up, settling in, my job, and all of the advocacy that I have been doing since I got here.

In the meantime, grab a snack and a drink, and find a comfortable chair to kick back and relax in, ’cause this is going to be a looooooong story!

My days here in Washington, DC are numbered. Don’t worry, its nothing bad. I have been offered a job as a Systems Advocate in Rochester, NY, and I have, of course, graciously and gleefully accepted. This has been a few weeks in the making, and I didn’t want to say anything until it was official. 

I will be working for the Regional Center for Independent Living (RCIL), which is closely and permanently affiliated with the Rochester Center for Disability Rights (CDR). In fact, the two centers are in the same building. In addition to doing outreach to the disability community, I will be working on a number of local and state issues, and will be doing a lot of travelling around the state. The best part of this is that I will be working very, very closely with Rochester ADAPT, one of the largest, strongest, and most active chapters in the country. This is a powerful group of folks, and I am indeed honored that they want me on their team! My supervisor, and the center director are members of Rochester ADAPT, so there will be no problems with me going on national actions and gatherings.

CDR/RCIL has many programs, including a recreation center and a drop-in center. I have a counterpart who works with the deaf community. Rochester has the highest number of deaf people per capita in the country, so there are lots of deaf clients, and almost everyone knows American Sign Language (ASL). Of course, I fully intend to brush up on my sign language skills.

I am fortunate in that many of the folks that I will be working with are friends. I have known some of these folks for years. I intend to work hard to be a good asset to RCIL and to Rochester ADAPT. I also plan to be active within the community that I will be living in. Needless to say, I am very excited!

I will keep you abreast of how I am faring in the move. To me, that will be the hardest part (along with saying goodbye to the friends that I have made here in DC), so I’d better roll up my sleeves and get to work.

Today, ADAPT will be meeting with Timothy Kaiser, of the Public Housing Authority. The meeting is the result of the ADAPT action on Tuesday, September 12th. Mr. Kaiser is the person who has the authority to get the public housing authorities across the nation to set aside Section 8 vouchers for people with disabilities who are transitioning from institutional settings. I will find out what happened in the meeting and post it here.