connecting to the world

There are people who get Ph.D.s in social interactions in humans. It is complex. We also have cultural rules in social status and social interaction. Some people are masters at figuring out how to function in their environment and be successful key people in a community.

We get our early lessons as a young child by learning from our parents and siblings. Then we go to school to learn the social structure and politics on the school yard. Each niche slightly different from the other. Our interactions with one another is predominately by visual cues and further communication is done by speech and auditory means. How does one learn the complexities of social communication when they have a lack of vision and hearing? How do they compensate and learn the realities of politics? I don't mean government, I mean social interaction politics. What about all the incidental events that occur that are non-existence to a person with a hearing and vision loss, but blatantly obvious to the person with average hearing and vision?

Countless times I have had people with average hearing and vision look me at like, "It's so obvious! Why don't you get it?" and treat me as naive, remedial or just not with it. All I need is a small cue in. Just bring something to my attention like if I wasn't there and didn't witness the event.

I have been blessed to be around people in the past that would cue me in on the little things. It is like someone turning on the light switch in a partly lit room where you can't see everything. Cueing makes my world just a tad larger and fulfilled. These kind people have allowed me to live my life as if I'm not trapped behind the Plexi Glass feeling isolated from my world. It isn't babying or remedializing the situation, it is just cuing in.

As I reflect back on my life, there has been people who have made a big difference. Just their little acts and understanding made my life so rich. I then wasn't an outside weirdo. They have no idea that little difference makes. Those who detest me, or see me as a burden or remedial effort, I am more isolated. They make my world so small and isolated. They make me feel handicapped. Trapped. Of course my logical brain can always say, it is their problem, but they are the ones getting the social interactions and acceptance in their environment, while I'm shoved aside and rejected. I am the one kept at a distance. I don't want to be your friend, I just want to be treated as an equal, is that so hard? When you have to be in a situation like this daily, it gets old. If it is just two or three people, you can deal with it as long as the main system supports you. But when your main system keeps you at a distance, it is rather ostracizing.

I don't know if being deaf-blind makes you more sensitive. I am aware that when my vision drops, my sense of smell becomes much more keen and overwhelming. My other senses have to kick in to compensate. I often wonder if my sixth sense is much stronger as well. Some people have said they believe that I'm more aware of the more unusual or unseen than most. I know that I'm sensitive, but not so much emotionally as just that I tend to feel auras much more strongly. That too can be overwhelming. If someone is really happy, I really feel it. If someone is not having a good day, I really feel it. My sixth sense picks this up since my visual and auditory cues are limited. So my body instinctively kicks in another avenue to connect to my world. I see people in different avenues and ways than the average person. I notice different things, feel different things, see different things and hear different things than the average person. Due to this difference, people can't relate to me, nor can I relate to them. I don't know what they see or hear and they don't know what I feel, see and hear in other avenues. It is like being on a different frequency on the radio and listening to a different station. Different music. Different beat.

The sensitivity bit is a challenge. I cannot turn it off. Just like someone taking their fingernails down a chalk board, how do you shut that out? To do that, you have to shut out all sounds. Just as I feel people's moods, it is hard to shut it out unless I shut out the world completely.

When people look at me and face me, I feel their aura, when they are turned from me, even where I just see the side of their body, it is like they are shut off from me. It is like they are saying go away, i don't want you here anymore. Although people who can hear, this is normal, for me, all my connections to the person have been cut off.

My connection to the world is also ever changing. I have a few tools that help me connect to my world. One tool are my hearing aids. They are the biggest help in communicating with people, but just as they are a wonderful tool, they have a lot of cons associated with them. Most older adults just won't wear hearing aids when they need them. Hearing aids are really difficult to adjust because it is artificial hearing. Sounds are intensely overwhelming. When someone is talking in the background, you cannot understand the person right in front of you. That background "noise" intensely interferes. This is not a hearing aid issue, this is a loss of certain frequency. Have you ever noticed how AM is harder to hear and understand than FM radio? FM is broader and has more frequencies to balance the sound, where AM has a narrow band, leaving out a wide spectrum of frequencies. As you try to turn up the volume (like hearing aids) it just becomes more distorted and hurts your ears. However, digital hearing aids are programmed to boost frequencies higher in the area with more loss, but even this is perfected and technology has a long way to go in this area. It is like being back in the 1950's as far as our current technology on computers, phones etc.. It is nearly impossible for any hearing aid to match a hearing loss. It can only be a broad guesstimate.

Another tool to connect to my world is my hearing dog. Those glances and ear turns tell me the incidental sounds that are occurring around me. It makes my life richer and apart of the environment. Without my hearing dog, things are such that you feel your depth just got smaller, your area of awareness is tighter. You look harder, turn your head more, glance back more and still are not completely aware of what is going on around you. Life turns dull like a head cold.

Hearing dogs are trained to alert you to specific sounds, but after being with their partner for a year, the dog learns how to move with your body, that they almost become one with you. Another tool to connect to your world.

My biggest challenge is how to connect to people who judge, label and assume. I do not know how to break into their social circle. I don't mean a friend circle, but the real world, like in the workplace. I realize that most people have problems with the political structure in the workplace. It's down right nasty, always needing to watch your back. I am at such a disadvantage that I have no clue what they need to know about me, but they put the burden on me to tell them what I need. Communication is 50/50, just because I am "different" than most people, doesn't mean the burden is on me.

Other people I have worked with, were gracious enough to see my limits in connecting to the work community. They did just a little cue ins, that made me aware and less "weird." They accepted me because they were open, not judgemental and also did not assume. They included me in their community. They weren't arrogant. They were secure enough in themselves to reach out to me and once they did, they realized it wasn't all that big of a deal or burden. We then had a 50/50 relationship. I learned about them and I was able to fill in for them when they needed. This is the 50/50 win-win situation.

In my life, I have found people either get it or don't. This isn't about what people think they get or not get. But people who can flow with you, are the ones to get it. It is how they perceive the world around them. How they notice things, how they are use to working with a diverse group of people. Them changing to meet people's needs is so automatic for them, it is no effort at all. It is flowing.

However, the ones who do not want to connect, really make the situation difficult. These people are unsure, but they expect me to fill in the gaps for them. They expect me to ask the questions, but it is them who have the problem. What a burden. It is exhausting because I cannot second guess. I have so many other things to overcome, please give me just a little break? How can I break into your social structure since I lack the ability to connect to the incidental social structure that is so accessible to you and not me? Instead, they judge that I'm not up to par, or remedial. They patronize me, demean me and get frustrated with me. For every time they are frustrated with me, they need to realized, I'm just as frustrated with them. Every person I meet is a challenge, all they have to worry about is me. Imagine if every person you are in contact with is a challenge and struggle. Where it takes time to learn someone. It is crucial for me to get to know a person so I can communicate with them easier. Some people get taken aback that I try to get to know them, it is about survival for me, not trying to be nosey.

I sense when people are tense around me and I know it. They do not know me well enough to know where I am coming from and judge. They keep me at arms length, out of my depth of awareness, they are out of reach to me. I then feel awkward in how to connect to them. I'm uneasy, sometimes trying too hard, but I want to scream "Help me out here, I am trying to connect here! Why is that such an issue with you?"

Attending the American Association of the Deaf-Blind conference in 1996, I learned how a variety of people communicated. It was like going to a world conference with 50 different languages spoken. Who would think that English could be communicated and translated in so many ways. Space to the average person is invaded, but to a deaf-blind person it is connection and community. Isolation is gone. Social interaction is high. I'm human again.

Learning social niches is challenging. Some people are gifted, but this is an area that is very difficult for me in the hearing-sighted world. What to say, what not to say, not to seem naive, or unaware to be subject to judgements and ridicule. Even well intentioned people are not aware that their actions maybe demeaning towards me. How do I handle this when I desperately want some high intelligent interactions? But people treat me remedial. How can I break this barrier? I set my hopes that every day, I try to find a new way to break in. That hope is what keeps me going.