Thursday, August 19, 2010

Summer Camp

     When I was ten years old in 1975, I attended summer camp located in Malibu. Camp Bloomfield was nestled back in the steep part of Mulholland Highway in the Santa Monica Mountains. The ecosystem was Mediterranean with thick oak brush.

     This was no ordinary camp, it was a part of the Foundation for the Junior Blind, a youth camp for kids who were partially sighted, legally blind or totally blind. Just beside Camp Bloomfield was Happy Hollow, a camp for deaf and hard-of-hearing kids. Their camp was not built yet, but participated in several activities in Camp Bloomfield. This was the first time I ever was exposed to American Sign Language and several kids with a hearing loss. Most of my life, I was around kids with a vision loss. It was fresh and new to me to experience something different. I loved learning sign language and being expose to a different culture. I had a connection.

        The camp session for kids my age lasted two weeks. I had the time of my life. They had regular camp activities from horse back riding, swimming, camp fires, camp fire songs, camp food to everything about summer camp. I loved hanging around kids similar to me. I found my niche. It was so easy to talk to anyone. It was so easy to make friends. It was so easy to be happy.

         Every summer I went to Camp Bloomfield. They had a session for middle school which lasted three weeks and a separate high school session was three weeks. I went all the way through until 1983. For the older session, wWe would have pretend, "New Year's Eve" dances, talent shows, regular dances, carnivals and many other fun activities. Everything camp. I use to call it my "Fantasy Island."

        The Foundation for the Junior Blind was based in Los Angeles. They also had activities throughout the year. I would go to some of their activities. This youth organization was a haven for me when I was permanently mainstreamed in regular public school in 7th grade. Kids are cruel and they will find anything to pick on. I was different. I was a target. I was the focus of a lot of bullying at my middle and high school. I was the ugly dork. I had some friends as I was in drill team, tall flags and then in my senior year I was in Marching band. I had one good friend while in drill team/tall flags. Then in my senior year, I just hung around the band. I did like the band a lot, but there was a gap. The place I always felt fully accepted was at the Foundation for the Junior Blind or Camp Bloomfield.

        In 1984 I was old enough to become a camp counselor. One of the requirements were you needed to have one year of college. I really enjoyed being a counselor. At this time my major was Therapeutic Recreation at California State University, Northridge. I loved camp so much that I wanted to do something in that field. Except a change happened when I was the horse specialist at camp. I knew I loved working with animals. I then realized I wanted to do some studies in veterinary medicine. A semester after camp ended, I transferred to California Polytechnic State University, Pomona. I put camp behind me and moved on to other interests in life. However, camp is a very special place to me, my best times in my life were spent there and will always cherish it. It was my "Fantasy Island" where my wishes did come true.

Thursday, August 12, 2010

Incidental Learning

You drop your keys, you hear them fall and you pick them up. You see a flicker on the phone to tell you there is a message on your voice mail. While walking around your college campus, you over hear a conversation and find out there is some free food in the next room. These are occurrences that happen every day that are so incidental, you are barely using conscious thought while taking action from the cues of hearing keys fall, seeing the flicker or over hearing the conversation. This is essentially a person who is connected and in sync with their environment.

Incidental events are all around us, in constant motion, appearing randomly. It is information, input and stimulation to connect you to your environment. It is knowledge and awareness. Incidental learning is also prevalent in the workplace. Below is an expert from Wikipedia on Incidental Learning:

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In terms of learning in the workplace, where everything is focused on performance and performance is everything, the informal element of learning needs to be factored into the equation for any real learning to take place. Companies need to add those accidental, informal intersections of learning and performance into the process. They need to understand that the informal side of the equation requires real people in real time: mentors, coaches, masters, guides, power users, subject-matter experts, communities of practice. What needs to happen is that companies and schools need to foster informal moments of knowledge transfer.
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What does this all mean to a person who is deaf-blind or in-between deaf-blind? The activities that go on around a person with a hearing loss and a vision loss is not absorbed in the same way as someone who has average hearing and average vision. Their incidental experiences are not going to be the same. It will be different. I could be duller, brighter, and with some vision problems, they could see double, triple or more. Depending on the frequency loss in the hearing, it could sound very different, creating an experience not like the average person. Like filters in a camera that changes a perspective in a photo. What is seen in one photo, may not appear in another. The angle could give a different view, and a different story.

When one person has a standard camera lens, and another person has a different kind of lens with filters, the same item photographed by these two people may have a drastically different image. These two people would have to communicate an understanding of what their image is, because of their lenses and filters they see a different world. This is like the comparison of a person who is in-between deaf-blind and a person with average vision and hearing. They see and hear different worlds. The input from their environment will be different. They will problem solve differently. Openness and patience with each other while the two photographers communicate to each other, is important for true a true understanding. Otherwise, they won't be able to connect. One will think the other is stupid because they do not have the open mind to realize what they see is different from what the other sees. 

I have had jobs where I had patient and wonderful people who instinctively knew where to cue me in on things I may not have heard or seen. They didn't have to instruct, over explain or patronize me. They just cued me in where I needed. This insight helped me in the beginning of a new job and a new environment. Co-workers would point out things that a person with vision or hearing take for granted. The little extra time the person would take to cue me in or fill me in, initially saved me so much more time later and I was on my way. I had the foundation I needed to take off like a rocket. My co-workers realize this has nothing to do with being slower than others, it is only that  my input systems are faulty, like old wires or like channels broken where other channels are utilized to get the information too me in a different way. Once information can be appropriately inputted into my brain, and I have the pieces, I then can function on my own and be independent. But without this initial input,  the cueing in, or the foundation, it could take years before I fill in the holes of missed information.

In situations that I don't get the simple cues and incidental fill ins, I'm isolated. Feel extremely shut out and I have to work extra hard to fill in the gaps of extra hours of reading and studying. Some workplaces have been like this and over the years it can get exhausting. Even if I have been at a place for awhile, and I do not get the chance to blend with the work culture, co-workers will assume that I have been there for years, I should know all the basics by now. But that isn't the case. If the channel they use is open to them, and mine are broken, I will never get that information they have. This then becomes a stressful environment. I become fatigue trying extra hard to fill in unknown gaps and holes. I'm lost in the dark while others have the light on to search, I don't have the light to utilize to find my way. This can lead to exasperation, frustration and stress. It is similar to someone trying to get instructions and one major piece of turning right or left on a particular street is missed. You now have to back track and find where you missed that crucial information to get where you are going. Sometimes this means you may waste hours of finding that missed piece of information. Finding that missed information when you don't have the keywords is maddening.

If someone doesn't understand that this is not about intelligence, being smart, aware, there will be misunderstanding. This misunderstanding leads to being critical, judgemental, patronizing, and demeaning. Not a fun environment. Asking questions are faced with demeaning statements. You feel as if you never can get ahead of the game. This is not a positive learning environment, but hostility. The teacher or the person with the knowledge need to think out of their box, and learn where the person is coming form in their perspective, not demanding they need to be at a particular learning level. 

Twenty years ago I worked in a veterinary hospital. I struggled with the job for many reasons. One person noted how difficult it was for me because he mentioned how he could be standing a few feet away from the door that was slightly cracked open and hear the veterinarian talking to the client. He could over hear if the veterinarian wanted to do some blood work, or x-rays, or fill a particular prescription. Before the veterinarian would come out to tell the tech what to do, he either had the x-ray machine turned on almost ready to go, or the vials, syringe and needle ready to draw blood or had half the prescription filled. He was tuned into his incidental world. I did not have this advantage.

Incidental is informal learning. It isn't formal classroom instruction, reading regulations, directives, manuals or policies. It is all this stuff that floats around that isn't formally written. It is information that could make life easier for you that is passed on by mentors and other people. Things that cue us in to get ahead of the game and that get that edge is usually absorbed by incidental means or through informal avenues. Connecting with people in discussion, mingling, having exchanges are apart of this edge that is learned by informal events and informal learning. This is how we stay connected and respected as someone, "in the know." Missing out on these oppotunities can put a person at a real disadvantage. Peer pressure will look at them as if they do not have it together.

No one learns from classroom instruction alone. It is even said that those with Ph.D. are not  well rounded until they are out in the world. Their knowledge needs to be experimented in the real world first before they can be considered as having it. They gain their experience after receiving their Ph.D and now can be considered well rounded. Very seldom is someone who just got their Ph.D. considered well rounded in their field until they gain the experience.

The movie, "A Few Good Men" has a scene that demonstrates well that not everything we need to know is written. Tom Cruise plays Lt. Danial Kaffe. Kevin Bacon played Capt. Jack Ross. In this one scene there is a witness on the stand played by Noah Wyle named, Cpl. Jeffery Barnes. Capt. Ross asked the witness if he was familiar with the Marine Corps Outline for Recruit Training and Cpl Barnes said, "yes sir" Cpt. Ross asked, "Can you please turn to the section for code red?" Cpl. Barnes was puzzled and could not because in none of the manuals was there anything on code red. Then Lt. Kaffe came up and asked Cpl. Barnes, "Can you open this book up to the part that tells you where the mess hall is." Cpl. Barnes informs Lt. Kaffee that that isn't in the book either. Lt. Kaffee sarcastically says, "You mean to tell me the entire time you have been at Gitmo, you haven't had a meal?" Cpl. Barnes informs Lt. Kaffee that he has had three squares a day.

Although this scene is trying to prove a point that a code red could happen even if it is not in the manual, I use this as a great example in both the code red and the mess hall that these are events that are not written down. The information is passed on in other ways. When you are deaf-blind, you need to be informed of these things or you most likely will not know about them. What may seem obvious to a sighted and hearing person, may not seem obvious to a deaf-blind person.

A personal story about trying to find a mess hall, is when I went for training in South Carolina for a position I held. I came in the evening before after dinner was serve, so I hadn't been to the cafeteria. The next morning it was pitch black. I wanted to get an early start so I wouldn't be late for my first class day. Looking for breakfast was a challenge. I do not see well when it is pitch black and can be considered legally blind. The woman at the information desk, said go straight back from the back door. I asked, "Straight Back?" She said, "yes ma'am." So I went out the back door as she said and went straight back. It was dark, I could barely see anything and certainly was walking blind. Mickey had his guide dog harness on and I did as the woman said, walk straight back. After about 100 feet, I went right into a deserted building. I looked left and I look right. There was no indication of which way I should turn. I went right and went into more darkness. So I then went the other direction to see if I could find something. I was getting a big nervous as I really wanted to get to class early.

The woman who gave me the instructions how to get to the mess hall takes for granted that she can see lights at a distance and buildings at a distance. I could not. To a person with low vision literally takes straight back, as straight back. I didn't have the ability to see incidental cues to direct me to the cafeteria. I came to a point that I saw some lights, started to walk closer to them and realized as I walked up to the doors, this was the cafeteria. This detour of trying to find the cafeteria was about fifteen minutes. When you cannot see, it can be exasperating, especially when you do not want to be late on your very first day to class. You want to give a good impression. Fortunately I was early to the first day of class. I was fortunate to have Mickey with me.

Most of us may not get accurate instructions, but for a person with low vision, giving some reference points or large landmarks is extremely helpful. For me, I might not see the small subtle things or small signs that will direct me to where I'm going. Others may see the small little iron decor as a landmark, but I may not see it. Wondering to find the house with the iron silhouette of the cat. Missing these landmarks can be exasperating, while a person fully sighted doesn't think anything about it, what's wrong with you? It is so easy to find the house. If they had the same vision loss, it would have been difficult for them as well.

Those with average hearing and vision do not realize how much their incidental world connects them to informal learning. What they think is incidental is small and insignificant, but what they don't realize is this information they learned is absorbed into their brain passively that their conscious mind may not be aware they are storing this information. They have the information in their head, not realizing why they have it, but looking at a deaf-blind or in-between deaf-blind person going, don't you get it? Duh!

When a person starts reading manuals, policies or regulations, their brain is able to piece the information together by their experiences they have recorded in their brain by incidental events. It is so passive that their brain is piecing it together when they do not realize it, while getting all this input in their environment. Imagine learning a text book of science, but going out to an exploritorium, and not being able to see and hear the displays on exhibits that will enabled you to put everything you just read in the science text book together. You would struggle. Life would be abstract with little meaning. No relative experience. A deaf-blind person would rely on feeling, a different way of perceiving the science world in the exploritorium. While an in-between deaf-blind person could use a little hearing, use a little vision and use a little touching. THe person with average hearing and vision would use their hearing and vision. All three different perspectives, all three gaining different experiences, all three would have to communicate to each other in an open minded way.

People learn by relativity. If they can relate to it, they can store the information. If it doesn't make sense, it is harder for them to retain the information. Their awareness of the world around them gives them that extra glue to put it together or that extra filler to solidify the foundation of understanding. The less information you have from missing incidental events, the less you will relate to concepts and learning new things.

A deaf-blind person has to work 2-4 times harder filling in the pieces to come up with the right path to understand a concept. Getting the assistance of extra help with perhaps a key word, or someone pointing out a concept can really relieve the pressure in trying to search for something you have no idea what it is or enough keywords to search for it on the Internet. If you miss the words, you don't have the basis to do an appropriate search. This isn't an issue of not knowing how to search, it is an issue of not having access to the correct keywords to do your search. The difference between searching with one word and three words. If you never heard the other two, your search may take longer or you may never find what you need.

Finding that channel that helps you get the input of information is what at stake here, and some people just may not understand this while they stay on their frequency and judge you while they stay on their frequency, never understanding if they changed over two channels, the pathway of communication and understanding open up and then there is a win-win situation for everyone.

Thursday, August 05, 2010

Helen Keller brought Deaf-blind to the world. What would you rather be, Deaf or Blind?

Helen Keller brought to the world the wonder of one person's perspective of being deaf-blind. One person asked Helen Keller, "What would you rather be, deaf or blind?" Helen Keller responded that she would rather be blind because if she could hear, she could have conversations with the people around her. She would then feel connected to her world. Helen expressed her isolation with not being able to hear.

Helen Keller was a child in the Victorian Era. An exciting time of new inventions, new way of life, catalog ordering and people starting to become more mobile. The late 1800's and early 1900's. What a time. It was a time unlike today, back then the industrial age was just getting its massive momentum. Life was changing fast. They didn't have the graphics of today, texting and TV. The telephone was just about to be invented and wasn't being used by the general people yet. Driving an automobile was a very new concept, not everyone had a car. Perhaps Helen Keller's perspective would be different today. Who knows.

Many culturally deaf individuals are proud being deaf and wouldn't change being deaf for anything. They have deaf pride. They have their deaf community and do not feel isolated from the world. They have adapted. Besides, today they have captioned TV, TTYs for the telephone, texting, the internet, sign language, speech recognition programs and much, much more. Back in the Victorian age, being deaf would be very isolating.

Having asked others about this topic, I learned different perspectives on this topic. For a deaf-blind person, giving them a choice of one disability, is like gaining one. What a concept that I actually gain something back. But in reality, I don't get to choose. I still have to deal with having both a vision and hearing loss. I still have and face the world with the challenges of the combined disability, which is unique from just having a heairng loss and just having a vision loss. They are combined, creating a different situation. It isn't a hearing loss plus a vision loss, it is more like a hearing loss times a vision loss. To me, deaf-blindness is not deaf and blind, but a whole new disability due to the complexity of the loss. If you add up the percentage of my loss, it is one whole disability plus 40%. That's almost a disability and a half. If I got to choose one over the other, I would be gaining 40% of my awareness of my world around me.

If we could choose between being deaf or being blind, lifestyle and how we live our lives will dictate which we would rather have. Playing volley ball with a team on the beach, driving down Pacific Coast Highway and being mesmorized by the sights of the ocean, the sunset and the boats, you can do being deaf. On the contrary, playing a musical instrument, listening to the radio, hearing a gentle flow of water in a creek, listening to the birds sing in the morning or at dusk are things you can do being blind. Granted, variations of these situations, you can be blind and play altered volley ball and some deaf can play instruments through vibrations, but these are unique cases. Many more blind are involved with HAM radio than deaf. Yes, there are deaf who are involved with HAM radio, but it is limited. Many blind individuals have gravitated to HAM radio as a hobby. .

I see that many of those with a hearing loss use Helen Keller's statement to make it seem that being deaf is worse than being blind, but they have never experienced a vision loss. So this is an assumption. Is being blind really easier? I had a few experiences with a hearing loss group that was extremely isolating. I felt because they could see much better, they heard better. They can see the facial expressions across the room when someone talked or read lips. For me, I had to read the live captioning, except it was hard for me to read the live captioning due to my spotty and limited vision. My eyes couldn't keep up fast enough with their conversations and I didn't have the back up of reading their faces. One of their discussions was coping with a hearing loss, missing out on conversations with other people. But when I talked about my vision loss in this respect, they looked at me as if we were talking about a different disability. They were completely clueless how my vision helps me HEAR! They took for granted how much their eyes fill in what they cannot hear.

When a person has both a vision and a hearing loss, trying to communicate within your environment, you cannot split deaf-blind. They are a unit disability. I see deaf-blindness as a disability all its own. If deaf-blind is a different disability from being hard-of-hearing, tehn being in that meeting with other folks who were hard-of-hearing only, then yes, I was talking a foriegn language to them, because being deaf-blind is different from only being hard-of-hearing. When it comes to isolation and communication, and the challenges you face, you cannot seperate deaf-blind. Having a vision loss is also isolating and you are faced with communication hurdles and barriers as well as a hearing loss. Put it together to make deaf-blind, you have a whole new set of issues that a hard-of-hearing person or a blind person doesn't experience. Deaf-blind is a unique disability that has issues with isolation and communication.

Hearing loss, vision loss and deaf-blind are literally three different disabilities. Unfortunately, the deaf-blind do not have many avenues for support other than deaf groups or blind groups. We struggle trying to fit into those groups for one reason or another. We can't see ASL that well, or can't hear the blind during their conversations in a group. For me, it was difficult to see the live captions. So these groups are only accessible to those who are for that particular disability. They claim they are "open" but that has not been my experience. Their inability to understand that having a vision loss really significantly makes communicaiton more challenging ws interesting. That they would have discussions how frustrated they would be with hearing people, just as much how I felt frustrated with them. They think hearing people need to be more open and understanding, but what about them? let's turn the tables to another disability, and they didn't understand themsevles.

The hearing loss world is complex. There are different groups within hearing loss. The later deafened group where the person became deaf later in life. There is the /hard-of-hearing group, where they have partial hearing. Then there is the culturally deaf (deaf community) group. The culturally deaf have their culture based around sign language.Then there are deaf individuals who never learned sign, but were born deaf. They a re not invovled with the deaf culture.

The deaf community is rich and they do not feel isolated from their world. Today there is captioned TV, text messaging, video phone and deaf cultured events that keep many deaf active in a rich social life. Unlike the later deafened adults, the culturally deaf feel very accepted and satisfied with their culture. They have a strong network of community. I started to learn sign and be apart of a deaf community when I was ten years old. Those who are later deafened have adjustments and challenges to make. They had a hearing life, communicating to the world by way of speech, and now it was taken away from them. They seem to not adjust as well and feel more isolated. Some adapt very well, others have their challenges.

To want to be deaf or want to be blind over the other is a preference. One isn't truly worse than the other, that is subjective and it is about the needs of each individual. I enjoy driving. I enjoy viewing and seeing our gorgeous National Parks and National Wildlife Refuges. I enjoy watching people's facial expressions, I love observing behavior in animals, I love watching a sunset. These are rich things in my life that I feel they are slipping away as my vision becomes worse. But today, I can still see natural beauty and can still at least drive in the day time. For that, I can say I'm blessed. I would prefer my vision over my hearing. But again, I don't have a choice, I have to deal with what I have and cherish what I have while I have it.

Read about others opinion what they would rather have, their vision or their hearing and they will give you their answer unique from someone else. This is becauuse it is a personal and individudal thing. It is subjective and a preference. It doesn't mean one is worse than the other, it is what it means to the person and how they live their lives. What makes their life rich. Some people are auditory learners and some are visual learners. You can't say one learning style is better than the other. It isn't, each person is an individual, and use what is best for them. So there is no answer what is worse or better to live with, it is just opinion and the person's individual choice what they would prefer.