First you might be asking, “What is a deafblind Tactual carnival? “A tactual carnival is a carnival set up for persons who are deafblind, this means setting up and having games that neither require vision or hearing to play. The leader of our SE PA Deafblind group has created from the ground up each and every game. This year the tactual carnival was held in the fellowship room of the Christ the King Deaf church. The Pastor of that church is deaf herself. So the games were:

Godzilla verses Angry Birds

Treasure Island

Wipe Out

The Hot Wheel

Hold it

Extinct

Plinko

Meteor Shower

Astor Chimps

Star Wars Death Star

Dingo Royal

The church provided hot dogs and other yummy delicious treats for us to eat. I even heard that there had been cotton candy, but I didn’t know that until afterwards. In total there were about 17 DB folks, including myself. And then the rest were volunteers, helping run the games, people from the church, Lion club members, family members, and the most number were the SSP’s needed to interpreter for the deafblind.

I will tell you all about the day. The first order of business was I was being trained as a deafblind consumer to get SSP services. I was trained by the head SSP outreach coordinator, who came to our house at 9am. She began her talk about the history of SSP’s. It was very interesting to know that other Deafblind persons in Seattle were the first ones to coin the term and to get involved in a deafblind movement. It was also interesting to hear that those same deafblind persons were all lead on their own. She told us about the deafblind service centers and how they helped the Seattle folks. She talked about what our SSP program would be and would not be. And that PA is by far not the first or last state to create a SSP program, that there are approximately 29 other states with varying degrees of SSP programs. There have been more and there has also been less. That all due to funding depends if a program continues or not or who they can service and so on.

Around 10am we left for the church, which was in Westchester. It was a 45 minute drive without traffic, which of course we did encounter. Westchester University was having its homecoming parade, so this meant that many of the streets in the main part of the town were closed. So we were forced to drive 15 blocks around the parade in order to get to the church. We arrived a little later than we had wanted, but before the carnival and others showed up.

The day was beautiful and sunny, and both I and hubby left wearing sweaters. On the way to the church we continued the training, talking about what an SSP can do, for example things I might want to go and do. For example if I wanted to go bra and panty shopping, this would be a task they could do. A SSP now could not give personal opinion on which bra or panties are the best, they cannot make decisions for me. The most important part is that with an SSP, I come first. I make the decisions, I determine the path, and I am given the options and then go with that. An SSP can’t be texting or talking on the cell phone to friends, yes people do have lives but to neglect to leave a deafblind person alone and not say what is going on, is something an SSP should not do. I can determine what I need to do, how do that task, what I want to look at, what I don’t want, how I need help, how I need communicate, how fast or slow I want to go and so on. And the best part of all, I don’t have to beg family to help. Not that I mind asking family but I do feel bad for asking for rides, for asking for help, for depending on others. I usually have to work around that person’s schedule, to go and do an errand on their time, not mine. This for any normal person is demeaning, but for a deafblind person is robbing them of the littlest bit of independence. I never understood completely the importance, the need for this until I was here myself.
And although family means well, I am my own person, I have a brain and can make my own decisions, if given the options available, I know what I like and what I do not. Sorry I got on to another tangent.

So the Coordinating SSP who did my training, who also gave us a ride to the church, needed to be there in order to set up for the carnival. When we arrived around 11:30, we arrived just as they were setting up some of the games.

I was taken into an adjoining room from where the carnival would be held, this room was to be for the deafblind experience and other venders who came. I am sure you’re wondering what and a deafblind experience is. The organization that we are affiliated with, DeafCAN, had several activities set up in a controlled environment for persons who wanted to put on a blindfold, and ear plugs. This was to simulate being deafblind. I did hear that there were quite a few folks that tried this out. A friend of ours from our life group was actually of the one participate on this experiences. Once I have her account of this, I will write about it. While waiting for everything to get set up, I sat in that same room as the deafblind experience, in a group that was having a question and answer for a group of interpreting students. My friend from Ohio was the designated deafblind person for that. After she was done answering all of the questions those students were paired up with a deafblind person, to be a SSP for the carnival. My friend from Ohio is completely blind and completely deaf. We had a nice little conversation. And yes we talked in all sign. It was nice to see her, as the last time she was here was in July for the pool party. While I was talking to her, hubby was being told what we were saying by another interpreter. At some point others came in who knew me too.

When I was done talking to that friend, hubby told me that the Temple University people where there. My disability counselor from Temple and the several folks from CART were there too. CART is Captioning Access in Real Time; at least I think that is what it stands for. As I might have mentioned previous, when I was taking classes the university provided CART for all of my classes. A captioner would type every spoken word, from either the students or the professor, as many of my classes were discussion type classes. The captioner would type all of this on a steno machine, which would go to her computer, and then using a screen reader, NVDA, go to a braille display. The captioner could type up to 270 words a minute, yes that is alot…way more than I can type in one minute. And yes, I didn’t keep up with every word, but at the time I was supplementing this with my hearing. In order for a blind person to do this they MUST have good good braille reading skills. This is not the type of thing for the average braille reader. Anyway, all of those people came from the organization that provided me that service at the university. In a roundabout way I made a few more connections between organizations and people. It was nice to see my previous captioner and my disability counselor. Made me want to go back to school. And he told me several times they want me back. That they as the university would do anything to make sure I graduated, and was successful at doing so. He mentioned that they would even provide a tactual interpreter and CART if I needed both. So I talked to them briefly, and then I got sucked into the carnival games. I mean sucked into the games in a good way. By this time I was already starting the games behind everyone else too.

I started with the Treasure Island game, which was I think coaster. Like coasters you put a drink on, but these were made out of wood, they were face down on the table. You would pick one coaster, some of them had coins on the underneath side, others had a key, and others had a picture of a skull and cross bones. If you got a coin, then you actually got that coin. Some of the coasters had several coins. If you chose a coaster with a key, you got to open a treasure chest. If you got a second key, then there was another treasure chest with a bag of coins.

Different people were running the games, some of them were deaf themselves, others were Lion club members, others were sighted and hearing, and a few were teenagers. Oh I think there were a few family members running games too. To each game you went, if you won or did the right movement or chose something right, you got coins. I think the next game we went to was the Hot Wheel, which is a spinoff of the TV show. There are no letters or money involved in this game. For the Hot wheel, you chose 4 numbers from 1 to 8. You would spin the wheel and if the wheel hit on your number, you got a point, thus a coin. The leader of our group’s dad was running this game; he is a Hoot and very fun.

In the game room, it was so noisy; I could not rely on my hearing at all. People standing right next to me, were yelling and I could not hear but a few words. So this meant another chance for me to try out all of my signs..for the rest of the day I mostly got all of the information for games and the like through sign. You would never think a room full of deafblind, deaf and blind persons would be so noisy, but it was. Loud enough for me not to hear. I guess that is why I have been learning sign. Hubby and I were paired up with an SSP and an interpreter. The SSP was for me and the interpreter was for hubby. The first SSP was, well I will call her M. I don’t know much about her other than she was a lady. She had never had any experience in being an SSP, and she was deaf. She helped me with going to all of the games. Unfortunately she was a bit on the bossy side, a little pushy. Like I asked what games were available, so she just took me to another game? I would ask, how do I play this game, and I would not get any feedback. She did several times, show the braille instructions, which I had read before coming to the carnival. M would only sign a few words into my hand and it were only finger spelling. Later someone mentioned that while I was signing to her, her attention was probably on something or someone else, so she was not looking at me, but of course I am blind I would have not known this. At some point, I was reassigned another SSP who had been an interpreter but was a little rusty on her signs. This was really good, because I needed more time to understand the signs.

Most of the games began at noon, and then went to 5. In that time we played all but 2 of the games, as I didn’t know where they were. As I think, I mentioned before I had been having digestive issues, and those same issues reared their ugly head on this day too. I wasn’t hungry and didn’t feel good to eat. By the time we ate most of the yummy food was gone. We played several games twice. The slime game, Hold it was gross but fun. Imagine a cooler, one that you would put ice in in. but the cooler was full of slime. In the slime were these bones, squishy bones. I don’t even know what to call them, but they are a toy for kids. The goal was to use one hand, to get the bones from the cooler and then put them into a container next to the cooler. It wasn’t the easiest, or the hardest game, but it was messy. No I didn’t get anything on my shirt, but I had slime up to my elbows. Once you got the hang of getting the bones out, in just a scooping manner, it was doable. There was a time limit for the 6 bones. If you got all 6, you got so many coins.

One of our favorite games was the Godzilla verses angry birds game. There was a play board, about 5 tiles by 6. There were 6 birds made of playdoh, several birdhouses on the tiles in different places on the board, and a really really big Godzilla. The Godzilla was about a foot tall, and several long, it was made out of the hard plastic, and shaped with horns and spikes and all of the things Godzilla is known for. You would roll the dice, and whatever number you rolled, you would move your bird. Then the other person would roll their dice. This is what determined the Godzilla movement. Depending on what was rolled, depended on how the Godzilla would move. It could move left right and front to back. If a bird was in the way of the Godzilla’s foot, the bird would get squished. If the bird was in the way of the Godzilla’s tail, the bird would get hit off the board. The goal was to get to the birdhouse and then get all of your birds from the safe zone to the out zone. The birds could move front or back and left or right.

There was a family with a little girl who is deafblind, she is mainstreamed in a public school. I stopped and talked to them a while, while hubby was playing a few games of his own.

By the end we had accumulated about 250 coins, which then we could redeem for prizes. There were several prize tables. Items for 50 coins, items for 30 coins, and then items for lesser amounts of coins. In the end we got two pumpkins I would say, about 4 inches tall. Each pumpkin had LED lights in them, and would blink different colors. The pumpkin had a hat, with a funny set of sun glasses, like in the shape of bats or big granny glasses. We also got a game; I think called shut the box. We also picked out a few of those squishy bone toys for our niece and nephew. We also got some candy.

In the end we did sit down and eat, a few left overs. Hot dogs and pretzels. I forced myself to eat more than anything. The carnival started wrapping up around 5pm. There was a cleanup of tables, food and chairs. The room while all of the games were set up was a bit crowded and hard to move around in. I don’t know how things were set up, I just know going from game to game, it was hard to move sometimes. After we had eaten, I said goodbye to my friend from Ohio. Poor thing was so tired her finger spelling was sometimes misspelled. Mostly hubby and I just hung out while everyone was cleaning up. All of the interpreting students had to get their paperwork completed to get the hours. The same SSP coordinator gave us a ride home including another gentleman from our area.

On the way home we stopped at the pharmacy to pick up some medication that I would need for the next day, while doing a mock SSP trip in the process. The mock SSP trip was to finish up my DB consumer training. When we got to the pharmacy, we went in and she was telling me all of the things we were passing on the isles. For example I would have known that CVS had Halloween costumes, if she had not told me. We got the medication and went on our way. The men waited in the car while we went into the store.

We got home around 7:30pm, so it was a long day, certainly fun, but draining too. I was drained because of the communication, because of the signing, and just then trying to figure out what people were saying to me.

We had a small dinner and then went to bed, as the next day was going to be even more fun than this day. Well I can’t say it will be fun, but disguising. So when I say fun, I am being sarcastic.

I hope I haven’t left anything out. Of course I might add things in future posts, if something pops back into my head.