Twenty years ago, July 26th, 1990, the Americans with Disability Act was signed. Thirty Seven years ago, in 1973, the Rehabilitation Act was signed. Why do we even have to have laws to allow those with disabilities to get appropriate accommodations? Isn't it common sense?
It is sometimes amusing to see how different people respond to me. Some feel that I appropriately need accommodations. Other see it as a special treatment. What is an accommodation anyway? I don't mean the legal definition, but in the world and how people perceive it.
When something is on the top shelf and a very tall person gets an item for a petite young lady or an old grandma, this is accommodating them. It is not considered a special treatment. The tall person feels oblige to be able to help. But this isn't always true for a disabled person requesting an accommodation. Sometimes it is perceived as a burden or special treatment.
All I ever want is to be apart of a community. Some people scoff and say, "I treat everyone the same." What does that mean? That talking directly to me, slowing slightly so I can understand is special treatment?
What does it mean "I treat everyone the same!"? No one treats everyone the same. You do not treat your mother the same way you would your best friend. You do not treat your boy/girl friend the same as you would a four year old niece. You would even slightly be different to a four year old nephew. You even treat a stranger different from your spouse.
To communicate and connect to the people around us, we adjust. When we are in a professional setting, we act professional. When we go out to a social party, we will also act very different. We adjust talking to our grandma and switch to a different social interaction when we talk to our best buddies. This is accommodating the folks to fit in the appropriate niche. When we talk to someone where English is not their first language, we slow down our speech
We can't make the world equal and even for everyone. That is an impossibility. So how could anyone treat everyone the same? They can't, that is their way of saying they do not want to change themselves to accommodate someone they think is getting special treatment.
However, each human has a right to belong to a community and network. It can be challenging to balance accommodations where it doesn't become a burden or special treatment. Each person will have a different opinion. I have found some people willing to slow down their speech, articulate and be patient in explaining things carefully to me. On the other hand, I have had people short, rude and patronizing. I've had people understand I do not hear well, but loose patience and just do not want to "deal with me."
I find it interesting that the attention a disabled person gets can create resentment. It is perceived as special treatments and not an accommodation. They focus on the difference and the attention that they are not getting. Why do people compare an accommodation as attention they are not getting? Or treatment the disabled person doesn't deserve? This creates animosity. We can always brush it off and say that person needs to deal with it, but when you have to work with this person and depend on their help, it makes it much more difficult. They put the barriers to your community.
Many disabled individuals have stated, "I can deal with my disability and try to problem solve to get around it, but it is the people who put up the biggest barriers." This also has been my experience as well.
When appropriate accommodation occurs and the person is apart of the community, balance happens. Resentment is non-existence and the disabled person can contribute to others as well and feel whole. This is balance. This is community. Working together.
Experiencing the world being in-between the sighted/hearing world and the deaf-blind world. Living in a partial world. This blog is a rough draft. I periodically edit each entry, it could have changed since you last read an entry. Please feel free to make a comment. Also, share your journey how you got to the blog. ==================================================================== Please read the oldest entry first, archives to the right with oldest (first entry) at the top.
Thursday, July 29, 2010
Monday, July 12, 2010
Partnered with a Hearing Dog
Since 1987, I have been partnered with a hearing dog. Before getting my dog, I was attending college and was concerned I couldn't hear the alarm in the dorms. The Resident Advisor assured me that they check every room during an alarm drill. I was thinking, they are not going to cross a fire to get to my room! They insist that they would. I always thought I heard too well for a hearing dog, but then, I couldn't hear important sounds like a fire alarm in the dorms. Then I realized, I really do need some kind of assistance. One term while talking to a sign language interpreter, she encouraged me to look into a program for a hearing dog. I did. I found that my hearing loss was acceptable enough to get a hearing dog. The program was unique in that it was set up like an obedience class where the instructor taught us how to train our own dogs. The class was 14 weeks.
This was the beginning of a great passion for hearing dogs. I became obsessed. Watson, a black and white Border Collie was my first. I never really had to tell him anything, he nearly read my mind! He alerted me for sounds for 8 years. Then cancer had spread through his body where life was no longer fun. I had to be put to sleep at 9 years old. Finding the successor dog was difficult. I evaluated about 25 dogs and trialed 10. This included trying a puppy where at 4 months of age, she had severe popping hip dysplasia. I didn't have the money for the expensive surgery and returned her to the breeder. The big programs won't tell you they have more than a 50% drop out or career change rate. So, finding the right dog is a bit challenging. People are either lucky or do not see that anything is wrong with their dog.
I did find Reid, who also became a part guide dog since I was legally blind in 1996. Unfortunately the stress got to him and he had to be removed from his duties. I decided to try a rare breed, a Nova Scotia Duck Tolling Retriever. She was a beautiful and adorable little dog, however, she had her own ideas. She certainly was not a natural alerting dog, but could be conditioned to do tasks when the setting was right for her. She later became the family pet. Got along really well with my nieces. She also was my first dog to try Musical Canine Freestyle.
Following Rubi was Jewel, a Belgian Malinois. She did ok, but at age five, she was killed in a freak accident. Then Mickey, my fifth dog, came into my life. He unfortunately developed a reactive bark towards knocking and people opening doors. His conditioning would work for a short while, then he would go back to hard wired instincts and genetics. I was distraught and frustrated having recently been through a number of dogs. Working full-time I couldn't raise another pup and take the chance the dog might not work. So I applied for a program dog. Then the wait.
I have recently tried going into public without a dog. Which I am really glad I did, because I didn't realize how much I depend on my dog to cue me into the world around me. Not only do I depend on their notification for sounds, but for walking as well. I also had a rude awaking how poorly I see inside buildings with poorly lit rooms and hallways by florescent lighting. Orientation is a bit more challenging. If there happens to be a window, the glare coming in is so harsh that it gives me a white out. In some hallways that are dark, I cannot see the person's face, feeling really nervous that they might try to say something and I will miss what they say. They will in turn think I'm rude or ignoring them if I don't respond appropriately.
Some people see me function "normal" that they wonder why do I need a hearing dog? I have hearing aids, why would I need a dog to help me hear? If I can see, why would I need assistance with orientation and seeing in some areas or at night? This is one of the most difficult situations to be in, being in-between. I'm not totally blind and not totally deaf. So if I'm not a total, why can I not benefit from assistance? Should I be deprived of an accommodation because I still have residual hearing and vision? How could anyone think that someone in-between would not need an accommodation?
Hearing aids are a great tool. But there are a lot of disadvantages as well. I do not wear mine 24 hours a day. Taking them off is like kicking off those high heels or taking off that annoying tie. There are just some frequencies that my hearing loss cannot be amplified loud enough for functioning or these high frequencies cannot be heard over the loud low frequencies I hear better.
A hearing dog expands my circle of awareness. This is done by a variety of tasks from the dog. I notice head turns, an ear flicker, and a look. These non-trained movements tell me all the sounds I might not hear. Something people with average hearing take for granted. A formal trained alert is a nose nudge and then the dog lead you to the sound. When I'm walking by myself on a walkway, my dog will look behind me. This is comforting that I am aware that someone is behind me without checking very 2 minutes to see what is around me. I can relax and walk forward like a normal person.
Being blind on my right side, I do not see or hear approaching cars to my right. My dog can look quickly to the right with a snap look. I quickly look to the right and see the on coming car. I have also had it where someone is standing on my right hand side and was not aware they were there, my dog will look where I will automatically look to see. Now I know there is someone standing there. It is an awkward feeling if someone has been standing there for a minute or so, and you were not aware they were there. Very awkward.
With a hearing dog, the plexi tube's thickness is now thinner, more sound can filtrate through, the cloudiness to see out is lessened as well. My world is a little more approachable and little less isolating. My life is richer. Without a dog, it is dull, where the senses have been deadened and numb, but the dog makes it fuller and I feel more alive. I'm more connected.
I now have an office job. Challenges all around. Very little in understanding deaf-blind, so I struggle. They have no idea how isolated I am, but with my hearing dog, I have a focus. A warm friend to get me through the day. My dog gives me independence to move about freely, to hear various alarms or someone calling behind me. My dog does so many things for me, but people see it as a perk, or how nice to have a dog at work. My dogs are much more than that, they are my accommodation, my freedom and my friend.
I have a new dog now, Divine. We have some ways to go before she is in full working mode. It takes time for a team to blend and work together. She gets the foundation training, now we are at work together, learning about each other. It is a partnership, a bond, a relationship. She is an extension of my body, like a wheelchair, cane, hearing aid, device all in a fur coat and walks with four legs. She is Divine, a yellow Labrador retriever taking her job very serious in helping me hear.
This was the beginning of a great passion for hearing dogs. I became obsessed. Watson, a black and white Border Collie was my first. I never really had to tell him anything, he nearly read my mind! He alerted me for sounds for 8 years. Then cancer had spread through his body where life was no longer fun. I had to be put to sleep at 9 years old. Finding the successor dog was difficult. I evaluated about 25 dogs and trialed 10. This included trying a puppy where at 4 months of age, she had severe popping hip dysplasia. I didn't have the money for the expensive surgery and returned her to the breeder. The big programs won't tell you they have more than a 50% drop out or career change rate. So, finding the right dog is a bit challenging. People are either lucky or do not see that anything is wrong with their dog.
I did find Reid, who also became a part guide dog since I was legally blind in 1996. Unfortunately the stress got to him and he had to be removed from his duties. I decided to try a rare breed, a Nova Scotia Duck Tolling Retriever. She was a beautiful and adorable little dog, however, she had her own ideas. She certainly was not a natural alerting dog, but could be conditioned to do tasks when the setting was right for her. She later became the family pet. Got along really well with my nieces. She also was my first dog to try Musical Canine Freestyle.
Following Rubi was Jewel, a Belgian Malinois. She did ok, but at age five, she was killed in a freak accident. Then Mickey, my fifth dog, came into my life. He unfortunately developed a reactive bark towards knocking and people opening doors. His conditioning would work for a short while, then he would go back to hard wired instincts and genetics. I was distraught and frustrated having recently been through a number of dogs. Working full-time I couldn't raise another pup and take the chance the dog might not work. So I applied for a program dog. Then the wait.
I have recently tried going into public without a dog. Which I am really glad I did, because I didn't realize how much I depend on my dog to cue me into the world around me. Not only do I depend on their notification for sounds, but for walking as well. I also had a rude awaking how poorly I see inside buildings with poorly lit rooms and hallways by florescent lighting. Orientation is a bit more challenging. If there happens to be a window, the glare coming in is so harsh that it gives me a white out. In some hallways that are dark, I cannot see the person's face, feeling really nervous that they might try to say something and I will miss what they say. They will in turn think I'm rude or ignoring them if I don't respond appropriately.
Some people see me function "normal" that they wonder why do I need a hearing dog? I have hearing aids, why would I need a dog to help me hear? If I can see, why would I need assistance with orientation and seeing in some areas or at night? This is one of the most difficult situations to be in, being in-between. I'm not totally blind and not totally deaf. So if I'm not a total, why can I not benefit from assistance? Should I be deprived of an accommodation because I still have residual hearing and vision? How could anyone think that someone in-between would not need an accommodation?
Hearing aids are a great tool. But there are a lot of disadvantages as well. I do not wear mine 24 hours a day. Taking them off is like kicking off those high heels or taking off that annoying tie. There are just some frequencies that my hearing loss cannot be amplified loud enough for functioning or these high frequencies cannot be heard over the loud low frequencies I hear better.
A hearing dog expands my circle of awareness. This is done by a variety of tasks from the dog. I notice head turns, an ear flicker, and a look. These non-trained movements tell me all the sounds I might not hear. Something people with average hearing take for granted. A formal trained alert is a nose nudge and then the dog lead you to the sound. When I'm walking by myself on a walkway, my dog will look behind me. This is comforting that I am aware that someone is behind me without checking very 2 minutes to see what is around me. I can relax and walk forward like a normal person.
Being blind on my right side, I do not see or hear approaching cars to my right. My dog can look quickly to the right with a snap look. I quickly look to the right and see the on coming car. I have also had it where someone is standing on my right hand side and was not aware they were there, my dog will look where I will automatically look to see. Now I know there is someone standing there. It is an awkward feeling if someone has been standing there for a minute or so, and you were not aware they were there. Very awkward.
With a hearing dog, the plexi tube's thickness is now thinner, more sound can filtrate through, the cloudiness to see out is lessened as well. My world is a little more approachable and little less isolating. My life is richer. Without a dog, it is dull, where the senses have been deadened and numb, but the dog makes it fuller and I feel more alive. I'm more connected.
I now have an office job. Challenges all around. Very little in understanding deaf-blind, so I struggle. They have no idea how isolated I am, but with my hearing dog, I have a focus. A warm friend to get me through the day. My dog gives me independence to move about freely, to hear various alarms or someone calling behind me. My dog does so many things for me, but people see it as a perk, or how nice to have a dog at work. My dogs are much more than that, they are my accommodation, my freedom and my friend.
I have a new dog now, Divine. We have some ways to go before she is in full working mode. It takes time for a team to blend and work together. She gets the foundation training, now we are at work together, learning about each other. It is a partnership, a bond, a relationship. She is an extension of my body, like a wheelchair, cane, hearing aid, device all in a fur coat and walks with four legs. She is Divine, a yellow Labrador retriever taking her job very serious in helping me hear.
Wednesday, July 07, 2010
So where do I fit in-between?
Many people who meet me are completely unaware that I have a hearing and a vision loss. Some may notice one, but not the other. I had a neighbor of my parents who had known me for seven years and did not even know and was shocked when I told him. Looks are deceiving. Though I am not trying to hide my disability, just survive in a critical world.
How do I actually hear? Stating a percentage of a hearing loss does not give you the insight of a hearing loss. Neither does an audiogram, although it is a better picture than a percentage. Extremely low tones I start at a 30db (decibels) loss, extremely high frequencies I have about an 80db loss. 30db is just starting to be a moderate loss where 80db is definitely a severe loss. What does this mean? When dad yelled with his low voice, I heard. When mom yelled at her higher pitched voice, she thought I was ignoring her. I couldn't hear her. Low frequencies I have a moderate hearing loss, at high frequencies, I have a severe loss. Losses can be mild to profoundly deaf.
When I was a child, I loved music. I heard the low tones, but as the flute would get higher, it would get softer and as it went higher it would fade. At least for me it did. How I hear is like hearing bass all the time and the treble turned softer. When someone turns the bass on the radio, it is too much since it is double bass for me. If you wanted to balance the tones for me, you would have to turn the volume up for higher tones (treble) 50 times higher to even out the frequencies with the lower tone.
So what does this all mean in real life? What it means is when higher frequencies are taken out of the spectrum of hearing, you are not hearing a balanced tone. When listening to someone talk, you are not hearing a balanced speech. The higher frequencies enable a person to listen to someone in a balance manner when background noises occur. This means that someone with a high frequency hearing loss is going to have issues hearing someone sitting right in front of them, even though the noise is in the next room. Lower tones always compete and drown out the higher tones. So if someone is vacuuming in the next room and is a lower frequency than the person talking right in front of you. The person with the hearing loss is going to hear the vacuum cleaner better than the voice sitting three feet in front of them. You would think that hearing aids could compensate for this, but in fact, it makes it worse. Technology tries to balance the frequencies, but a loss is a loss. Artificial hearing can only do so much to make up for the damaged hairs in the cochlear in someone's ear. Damage hairs is a neurological loss, for which I have this type of loss.
It takes time to get use to hearing aids, I've been wearing hearing aids since I was in second grade. I have thirty eight years learning how to use hearing aids. The younger you are to learn how to adjust to hearing aids, the better. This is why you see so many people who have a hearing loss at a later age, not adjusting to hearing aids very well. They are a hard tool to adjust to and can be quite overwhelming.
So, what about the vision? How do I see? Since birth, my sight has been a fluctuating change. I started out legally blind, then with contacts improved to 20/30 in my right eye and 20/40 in my left. Then through a long history of surgeries, one cataract at age 13 and three retina detachments that lead to total blindness in my right eye at age 17. My vision in my left eye stayed 20/40 for years until a cataract developed in that eye and I went legally blind. Due to being a high risk, doctors said to wait as long as you could before having the surgery. I was legally blind for one and a half years. I feared that I was only going to see as well as my last cataract surgery. It left me with barely reading regular print. The biggest fear was will history repeat itself and will I be blind for the rest of my life? The fear was immense.
After going to 10 different opinions, I opt for the surgery. My sight was restored to 20/50. I felt so blessed. Especially to be able to drive again. For 9 years my eye did very well, until something very strange happened. Some extreme light sensitivity that everything was extremely bright. This happened April of 2006. For one and a half months I could not drive or keep my eyes open. Through many doctors and specialists we never found out what happened and it finally went away. In the meantime, my right eye, with no vision, started to build pressure. The pain was so tense I couldn't sleep at night. In July of 2007, I had the eye removed. My other eye still started to deteriorate where it got harder to see at night. By the end of 2007, my vision in my left eye has dropped to about 20/60 on good days and 20/70 on bad days. DMV informed me that I could only drive before sunset and after sunrise. No more night driving. Most people think that isn't that big of an issue. Have it taken away and you will realize how much you do depend on your night driving.
Having only one eye to see, I have monocular vision. This means I have no depth perception. Moving objects are a challenge. When driving, I notice the two dimensional space of the end of my hood to the bumper of the car in front of me getting shorter. This is how I tell they are stopped, along with brake lights. This is how I judge when putting my own brakes on to slow down or stop.
My eye also has a lot of deterioration in the retina, which causes floaters. They are like floating ribbons in the sky, sometimes floating right in my center of vision. This is challenging when trying to read, because I have to look away, then look back about every other sentence when reading regular print. I also have graininess as objects are not as smooth as they use to be. This also means recognition of faces is also more difficult and nearly impossible with a window that disrupts the even flow of light, bad lighting, shaded areas, etc. Even the subtle expressions or facial cues are difficult to detect at an average distance. I must get up close to a person, where for some, this is invading personal space. All I can do is smile.
My physical eye itself is 30% larger than the average person. Then take a retina and stretch it over that space. It is like taking a picture and stretching it over that area, the picture becomes a bit distorted. Because my eye has been large all my life, I have adjusted to seeing this way as normal, but to anyone else it would most likely look freaky. My eye ball not only is larger, but elongated as well. Harder for light to travel into my eye and hit the back of the retina. This is why I have light issues and adjusting to dark areas. There isn't enough light to hit way back to the retina in areas that are not well lit. On the contrast, areas that are too well lit is too intense and hard for me to see. Even unlit hallways are difficult and I certainly do not see faces passing through these dark areas. People assume I know who they are. Sometimes I do, and sometimes I don't.
So what happens when you put my vision and my hearing together? A constant strain of trying to communicate with people. Think of a patchy television screen with lousy speakers that are hard to hear the speech. After awhile, you get tired of trying to "fight" the TV and give up. This is my daily life, day in and day out.
Some poeple will argue that I have assistive technology. I'm grateful for this equipment, but nothing will ever replace the eyes or the ears. This is all artificial.
How do I actually hear? Stating a percentage of a hearing loss does not give you the insight of a hearing loss. Neither does an audiogram, although it is a better picture than a percentage. Extremely low tones I start at a 30db (decibels) loss, extremely high frequencies I have about an 80db loss. 30db is just starting to be a moderate loss where 80db is definitely a severe loss. What does this mean? When dad yelled with his low voice, I heard. When mom yelled at her higher pitched voice, she thought I was ignoring her. I couldn't hear her. Low frequencies I have a moderate hearing loss, at high frequencies, I have a severe loss. Losses can be mild to profoundly deaf.
When I was a child, I loved music. I heard the low tones, but as the flute would get higher, it would get softer and as it went higher it would fade. At least for me it did. How I hear is like hearing bass all the time and the treble turned softer. When someone turns the bass on the radio, it is too much since it is double bass for me. If you wanted to balance the tones for me, you would have to turn the volume up for higher tones (treble) 50 times higher to even out the frequencies with the lower tone.
So what does this all mean in real life? What it means is when higher frequencies are taken out of the spectrum of hearing, you are not hearing a balanced tone. When listening to someone talk, you are not hearing a balanced speech. The higher frequencies enable a person to listen to someone in a balance manner when background noises occur. This means that someone with a high frequency hearing loss is going to have issues hearing someone sitting right in front of them, even though the noise is in the next room. Lower tones always compete and drown out the higher tones. So if someone is vacuuming in the next room and is a lower frequency than the person talking right in front of you. The person with the hearing loss is going to hear the vacuum cleaner better than the voice sitting three feet in front of them. You would think that hearing aids could compensate for this, but in fact, it makes it worse. Technology tries to balance the frequencies, but a loss is a loss. Artificial hearing can only do so much to make up for the damaged hairs in the cochlear in someone's ear. Damage hairs is a neurological loss, for which I have this type of loss.
It takes time to get use to hearing aids, I've been wearing hearing aids since I was in second grade. I have thirty eight years learning how to use hearing aids. The younger you are to learn how to adjust to hearing aids, the better. This is why you see so many people who have a hearing loss at a later age, not adjusting to hearing aids very well. They are a hard tool to adjust to and can be quite overwhelming.
So, what about the vision? How do I see? Since birth, my sight has been a fluctuating change. I started out legally blind, then with contacts improved to 20/30 in my right eye and 20/40 in my left. Then through a long history of surgeries, one cataract at age 13 and three retina detachments that lead to total blindness in my right eye at age 17. My vision in my left eye stayed 20/40 for years until a cataract developed in that eye and I went legally blind. Due to being a high risk, doctors said to wait as long as you could before having the surgery. I was legally blind for one and a half years. I feared that I was only going to see as well as my last cataract surgery. It left me with barely reading regular print. The biggest fear was will history repeat itself and will I be blind for the rest of my life? The fear was immense.
After going to 10 different opinions, I opt for the surgery. My sight was restored to 20/50. I felt so blessed. Especially to be able to drive again. For 9 years my eye did very well, until something very strange happened. Some extreme light sensitivity that everything was extremely bright. This happened April of 2006. For one and a half months I could not drive or keep my eyes open. Through many doctors and specialists we never found out what happened and it finally went away. In the meantime, my right eye, with no vision, started to build pressure. The pain was so tense I couldn't sleep at night. In July of 2007, I had the eye removed. My other eye still started to deteriorate where it got harder to see at night. By the end of 2007, my vision in my left eye has dropped to about 20/60 on good days and 20/70 on bad days. DMV informed me that I could only drive before sunset and after sunrise. No more night driving. Most people think that isn't that big of an issue. Have it taken away and you will realize how much you do depend on your night driving.
Having only one eye to see, I have monocular vision. This means I have no depth perception. Moving objects are a challenge. When driving, I notice the two dimensional space of the end of my hood to the bumper of the car in front of me getting shorter. This is how I tell they are stopped, along with brake lights. This is how I judge when putting my own brakes on to slow down or stop.
My eye also has a lot of deterioration in the retina, which causes floaters. They are like floating ribbons in the sky, sometimes floating right in my center of vision. This is challenging when trying to read, because I have to look away, then look back about every other sentence when reading regular print. I also have graininess as objects are not as smooth as they use to be. This also means recognition of faces is also more difficult and nearly impossible with a window that disrupts the even flow of light, bad lighting, shaded areas, etc. Even the subtle expressions or facial cues are difficult to detect at an average distance. I must get up close to a person, where for some, this is invading personal space. All I can do is smile.
My physical eye itself is 30% larger than the average person. Then take a retina and stretch it over that space. It is like taking a picture and stretching it over that area, the picture becomes a bit distorted. Because my eye has been large all my life, I have adjusted to seeing this way as normal, but to anyone else it would most likely look freaky. My eye ball not only is larger, but elongated as well. Harder for light to travel into my eye and hit the back of the retina. This is why I have light issues and adjusting to dark areas. There isn't enough light to hit way back to the retina in areas that are not well lit. On the contrast, areas that are too well lit is too intense and hard for me to see. Even unlit hallways are difficult and I certainly do not see faces passing through these dark areas. People assume I know who they are. Sometimes I do, and sometimes I don't.
So what happens when you put my vision and my hearing together? A constant strain of trying to communicate with people. Think of a patchy television screen with lousy speakers that are hard to hear the speech. After awhile, you get tired of trying to "fight" the TV and give up. This is my daily life, day in and day out.
Some poeple will argue that I have assistive technology. I'm grateful for this equipment, but nothing will ever replace the eyes or the ears. This is all artificial.
Saturday, July 03, 2010
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.
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.
Friday, July 02, 2010
Don't always take the label people give you
I was born in the mid 60's, the end of the period for baby boomers. My father was in WWII, therefore I do fit the definition of a baby boomer. At least a young baby boomer. When I was about two or three years old, my mother knew that something had been wrong with my vision. I would bring magazines close to my face to read.The doctor said wait to see if this continue, and it did. My mother took me to Jules Stein Eye Institute at UCLA in the late 60's. Amazing that I still remember this experience.
I remember being in a dark cold building. The inside was with decor of an old hospital, although the Institute was establishedin 1966. It was probably either 1968 or 1969 when I went there. I remember they had put me in a stainless steel baby crib. Lights were dim. I can still remember me squirming while the nurses tried to put ointment in my eye. One nurse holding me down as i wiggled; scolding me for squirming. They were being rough with me. When the exam was over, they finally connected me with my mother. Felt like I was away from my mother for a whole day. To a small child of 3 or 4 years old, that is enternity.
I was very happy to see my mom, but she was cold, emotionless like she wasn't my mother. Nor recognizing I needed consoling since I had been with those mean people pinning me down and scolding me. I didn't understand what was wrong with my mother and why she was stiff. What's wrong with mom? This person is not acting like my mother, who is she? What happened to my mommy? We got up to leave and I remember coming outside of the building and going down steps to the old white 1960's type station wagon.
It wasn't until years later I found out why my mom was cold. I found out that the doctor told my mother that I had a severe vision impairment. That I wasn't going to be a productive citizen, never will drive, and that I was most likely with some retardation. This was the first visit my mom has ever had with a specialized professional. Imagine how you would feel with that kind of news. This is back in the day when there was no Internet to search for answers. Doctors knew it all back then. Their word was considered almost gospel.This knews stunned and shocked my mother.
I'm so thankful to have parents that disregarded the doctor. They moved onto other doctors and tried to raise me as normal as they could. I wanted a pony and got one at age seven since my older sister had horses. Only fair right? I played with all kinds of animals, ran around, got dirty, fell etc. It wasn't until I went to pre-school that a nun realized I was not responding to my name. She knew that I wasn't the type of kid that blew people off. My mother had my hearing tested and found out I did have a hearing loss. The nun encouraged my mother to place me in an appropriate school. The nun, Sister Ann Marie, felt that "regular" school wouldn't be the best for me. I would get lost in the shuffle. We found Francis Blend, a public school for the blind in Los Angeles. Every morning I rode the bus for 1 1/2 hours to get to school. We lived north west of Los Angeles outside the city limits, but still in Los Angeles County. Fortunately, it only took an hour to get back home from school since mid-afternoon there isn't a lot of traffic like in the morning.
Most of the kids who attended Francis Blend were legally blind with about two in my class that were totally blind. I did not learn Braille, but all my books were large print. It was unique being with kids that were like me or me like them. I attended until 6th grade, the highest grade level at the school.
In middle school I was mainstreamed, but had great difficulty. Even in high school, learning was a huge challenge. I was shuffled through high school since the teachers literally didn't know how to handle a student who couldn't hear most of the lesson, nor could not see the front board very well. They too thought I wouldn't amount to anything successful in life. They predetermined that I would only have a low level job. I graduated from high school with poor English writing skills, not being able to complete a sentence, or able to write a decent paragraph. My math skills were remedial and I only had Earth Science for a science class. I didn't even have biology. My GPA was 2.2 and my combined SAT score was 580. The SAT has two parts and my combined score I received was a score someone could get on one part. Of course teachers and itinerary teachers labeled me as remedial. The structure in high school was extremely poor and wasn't accessible to me. I was labeled.
I had very high expectations of myself and really wanted to attend college, and I did. I went to California State University, Northridge: National Center on Deafness. The largest mainstreaming public University for the deaf in the nation at the time. I again was with my peers and felt I belong, unlike high school where I felt like an outcast and remedial.
I've always felt comfortable with my blind friends and deaf friends. I only had one deaf-blind friend from camp. I could relate to my hearing issues and I could relate to my vision challenges, but I did not know how to relate to being with a combined vision and hearing disability.
I had lost my vision in my right eye at age, I compensated for my monocular vision, no depth perception and low vision quite well. I fooled a lot of people by functioning normal. At middle school and high school I was teased, looked at as if I was a "weirdo" and just never really felt that comfortable in middle or high school. Not to disregard a very small number of friends I had in middle school and high school, but many people at my school were just rather immature. When I graduated from high school, I just couldn't wait to go to college. At California State Northridge, I felt I was in a community of people who were more like me and me like them. My signing skills improved.
I took an English class within the National Center on Deafness' program. In one semester, a deaf professor and a deaf tutor both brought my skills up to college level. Just one semester. It wasn't that I was remedial, my high school just didn't know what to do. My deaf professor taught the class in American Sign Language. In the right situation and the right environment, I do excel well. it is ignorance of people who put the barriers to my learning. When information is not accessible to me, I don't do that well.
I later transferred to California Polytechnic University, Pomona where I received my Bachelor's degree in Zoology and minor in chemistry. To reflect that I am a person who did very poorly in high school, only had earth science, had only high school Freshmen level math and couldn't write a complete sentence, I have overcome incredible odds. Afterwards I continued and received an A. S. degree in Animal Health Technology (Los Angeles Pierce Junior College), a Post Baccalaureate certificate in Natural Resource Interpretation (Humboldt State University) and a teaching credential for seventh grade life science and high school biology (California State University, Northridge.)
I'm far from remedial. But it is obvious in some narrow and poor environments, I will not do well. People seem to be the biggest barriers to my success, not my disability. They quickly judge that because I can't learn, hear, see or do, that I'm remedial, and do not think that an accommodation can solve the issue. People can't think out of the box, and label instead of problem solve. Fortunately for me, I had the chance to attend college, and proved to the Ophthalmologist at Jules Stien Eye Institute, they were completely wrong. Don't let people put labels on you.
I remember being in a dark cold building. The inside was with decor of an old hospital, although the Institute was establishedin 1966. It was probably either 1968 or 1969 when I went there. I remember they had put me in a stainless steel baby crib. Lights were dim. I can still remember me squirming while the nurses tried to put ointment in my eye. One nurse holding me down as i wiggled; scolding me for squirming. They were being rough with me. When the exam was over, they finally connected me with my mother. Felt like I was away from my mother for a whole day. To a small child of 3 or 4 years old, that is enternity.
I was very happy to see my mom, but she was cold, emotionless like she wasn't my mother. Nor recognizing I needed consoling since I had been with those mean people pinning me down and scolding me. I didn't understand what was wrong with my mother and why she was stiff. What's wrong with mom? This person is not acting like my mother, who is she? What happened to my mommy? We got up to leave and I remember coming outside of the building and going down steps to the old white 1960's type station wagon.
It wasn't until years later I found out why my mom was cold. I found out that the doctor told my mother that I had a severe vision impairment. That I wasn't going to be a productive citizen, never will drive, and that I was most likely with some retardation. This was the first visit my mom has ever had with a specialized professional. Imagine how you would feel with that kind of news. This is back in the day when there was no Internet to search for answers. Doctors knew it all back then. Their word was considered almost gospel.This knews stunned and shocked my mother.
I'm so thankful to have parents that disregarded the doctor. They moved onto other doctors and tried to raise me as normal as they could. I wanted a pony and got one at age seven since my older sister had horses. Only fair right? I played with all kinds of animals, ran around, got dirty, fell etc. It wasn't until I went to pre-school that a nun realized I was not responding to my name. She knew that I wasn't the type of kid that blew people off. My mother had my hearing tested and found out I did have a hearing loss. The nun encouraged my mother to place me in an appropriate school. The nun, Sister Ann Marie, felt that "regular" school wouldn't be the best for me. I would get lost in the shuffle. We found Francis Blend, a public school for the blind in Los Angeles. Every morning I rode the bus for 1 1/2 hours to get to school. We lived north west of Los Angeles outside the city limits, but still in Los Angeles County. Fortunately, it only took an hour to get back home from school since mid-afternoon there isn't a lot of traffic like in the morning.
Most of the kids who attended Francis Blend were legally blind with about two in my class that were totally blind. I did not learn Braille, but all my books were large print. It was unique being with kids that were like me or me like them. I attended until 6th grade, the highest grade level at the school.
In middle school I was mainstreamed, but had great difficulty. Even in high school, learning was a huge challenge. I was shuffled through high school since the teachers literally didn't know how to handle a student who couldn't hear most of the lesson, nor could not see the front board very well. They too thought I wouldn't amount to anything successful in life. They predetermined that I would only have a low level job. I graduated from high school with poor English writing skills, not being able to complete a sentence, or able to write a decent paragraph. My math skills were remedial and I only had Earth Science for a science class. I didn't even have biology. My GPA was 2.2 and my combined SAT score was 580. The SAT has two parts and my combined score I received was a score someone could get on one part. Of course teachers and itinerary teachers labeled me as remedial. The structure in high school was extremely poor and wasn't accessible to me. I was labeled.
I had very high expectations of myself and really wanted to attend college, and I did. I went to California State University, Northridge: National Center on Deafness. The largest mainstreaming public University for the deaf in the nation at the time. I again was with my peers and felt I belong, unlike high school where I felt like an outcast and remedial.
I've always felt comfortable with my blind friends and deaf friends. I only had one deaf-blind friend from camp. I could relate to my hearing issues and I could relate to my vision challenges, but I did not know how to relate to being with a combined vision and hearing disability.
I had lost my vision in my right eye at age, I compensated for my monocular vision, no depth perception and low vision quite well. I fooled a lot of people by functioning normal. At middle school and high school I was teased, looked at as if I was a "weirdo" and just never really felt that comfortable in middle or high school. Not to disregard a very small number of friends I had in middle school and high school, but many people at my school were just rather immature. When I graduated from high school, I just couldn't wait to go to college. At California State Northridge, I felt I was in a community of people who were more like me and me like them. My signing skills improved.
I took an English class within the National Center on Deafness' program. In one semester, a deaf professor and a deaf tutor both brought my skills up to college level. Just one semester. It wasn't that I was remedial, my high school just didn't know what to do. My deaf professor taught the class in American Sign Language. In the right situation and the right environment, I do excel well. it is ignorance of people who put the barriers to my learning. When information is not accessible to me, I don't do that well.
I later transferred to California Polytechnic University, Pomona where I received my Bachelor's degree in Zoology and minor in chemistry. To reflect that I am a person who did very poorly in high school, only had earth science, had only high school Freshmen level math and couldn't write a complete sentence, I have overcome incredible odds. Afterwards I continued and received an A. S. degree in Animal Health Technology (Los Angeles Pierce Junior College), a Post Baccalaureate certificate in Natural Resource Interpretation (Humboldt State University) and a teaching credential for seventh grade life science and high school biology (California State University, Northridge.)
I'm far from remedial. But it is obvious in some narrow and poor environments, I will not do well. People seem to be the biggest barriers to my success, not my disability. They quickly judge that because I can't learn, hear, see or do, that I'm remedial, and do not think that an accommodation can solve the issue. People can't think out of the box, and label instead of problem solve. Fortunately for me, I had the chance to attend college, and proved to the Ophthalmologist at Jules Stien Eye Institute, they were completely wrong. Don't let people put labels on you.
Thursday, July 01, 2010
What does it mean to be In-Between?
Where to start...
What is deaf-blind? People think of Helen Keller when they hear the words deaf-blind, but not everyone who is deaf-blind is like her. Many are in-between, where they are not totally blind and totally deaf, but stuck some where in-between being hearing and deaf or sighted and blind.
Connection to the world is more challenging. You literally see less, and hear less. This is less input from your surrounding environment. Your life is more dull, isolated and sometimes you feel trapped. In the right environment, with the right people, you are not trapped, but this is a rarity.
I'm experiencing isolation. I feel like I am trapped in a Plexi glass tube that has some scratches or smudges on its surface. I can hear the people a little bit, and I catch a word here and there. I can see, but not all that clear. Input is limited. I must use more brain power to fill in the gaps. Sometimes I don't always fill those gaps accurately. It is a guess. While trying to fill those gaps, I am always working on overload. My brain works frantically to fill in missed words and to fill in missed cues. Hoping I get it right. It is rather awkward when I don't. People see me function and my loss is hidden. They don't notice the struggle and are unaware of when I miss information. I am a master at hiding my disability. This is survival in a very critical world.
Growing up in school, and even in college, I had a few people come up to me and say, "I use to think you were stuck up!" They thought I was purposely ignoring them. They had tried yelling my name really loud or waving with full body, I didn't respond. They thought I was ignoring them. But then in another situation, the lighting might be right, less distractions in the environment and they try to get my attention, I respond. This can be rather confusing for a person who doesn't understand life of a person who is in-between. Different situations create a different avenue of being able to see or hear or not being able to see or hear.
Background noise to a person with a hearing loss is like always being at a ball game with a very bad PA system playing. Hard to hear. Having a loss in different frequencies, creates a situation where noise is distorted. The sounds are not well balanced. Even direction is distorted. Hearing aids are complex. They are artificial hearing. It is not like real hearing, it is mechanical. In addition, I'm blind in one eye. A person could be on my right side waving to get my attention. I may not see them and may not hear them. I may hear my name, but will have to circle around to figure out where it originates. I wish people understood, instead of making judgements.
Talking to more than one person is extremely challenging. It is so frustrating and I feel so sadden when I can't keep up with a group discussion. This really puts a damper on a social life. There are ways to accommodate, but it takes cooperation from others to change their behaviors.
I have been fortunate to be around people who cue me in when the other person wants to put in their comments. I then can shift my head towards them. These people make my life real and make me feel alive again as if I'm a human. Not something to isolate and ostracize. It is awkward for a person at first to do this, but after awhile they get the rhythm.
Sometimes the challenge is, people think I hear/see well, that I compensate well. I do, but it is harder world of being on top of my environment. The effort of others is needed, and it is hard to communicate or explain that they need to help me out a lot, to include me as an equal. That without their help, I feel isolated, even though it appears I am fitting right in. This hidden aspect makes it difficult to communicate.
Life is managed, not cured. I cannot cure my vision nor my hearing. I cannot cure other people into being more sensitive to help me function in their social circle as a normal human being. I can only manage myself. This means I have to choose my social circles carefully. And that if I am not being social or talkative, it means I'm missing a lot. Normally I am the type of person that likes to be right there in the conversation. When it gets too overwhelming, I just stay quiet.
I put effort when I can, and save my efforts when I need self preservation. Sometimes I can't afford to use up energy to reach people. Some people think I may only need to put in 2 times the effort to join in, when they don't realize it is actually 10 times. And at that level it can deplete energy rather quickly. If people could pitch in a little, put in the 2 or 3 times, that would mean I would only have to put in something like 5 times.
My heart is sincere. I want to reach out, but if others can't help meet me with a little extra effort, I deflate fast. I can't afford using my extra effort combined with someone else's extra effort. It is like i'm doing all the work and because I'm the one with the loss, I carry the heavy burden when communication is about two people, not one taking all the effort. I fade, become quiet and then shift to being depressed because I'm not apart of the social circle. Times like these I'd rather be alone than be with a group. Being with a group when you can't join in hurts a lot more than being alone.
Life is isolating enough, and my gratitute for those who take that little effort means the world to me. You allow me to be alive, apart of society and apart of the social group of belonging.
Being in-between has it challenges. You never know when you got information and you never know when you missed information. Accommodations are crucial. Patience on both sides is crucial. It is a unique experience. That little effort that a person gives is like magic once you learn the dance and step on your feet a few times. But the beauty is allowing a person to feel alive, part of the community and accepted.
What is deaf-blind? People think of Helen Keller when they hear the words deaf-blind, but not everyone who is deaf-blind is like her. Many are in-between, where they are not totally blind and totally deaf, but stuck some where in-between being hearing and deaf or sighted and blind.
Connection to the world is more challenging. You literally see less, and hear less. This is less input from your surrounding environment. Your life is more dull, isolated and sometimes you feel trapped. In the right environment, with the right people, you are not trapped, but this is a rarity.
I'm experiencing isolation. I feel like I am trapped in a Plexi glass tube that has some scratches or smudges on its surface. I can hear the people a little bit, and I catch a word here and there. I can see, but not all that clear. Input is limited. I must use more brain power to fill in the gaps. Sometimes I don't always fill those gaps accurately. It is a guess. While trying to fill those gaps, I am always working on overload. My brain works frantically to fill in missed words and to fill in missed cues. Hoping I get it right. It is rather awkward when I don't. People see me function and my loss is hidden. They don't notice the struggle and are unaware of when I miss information. I am a master at hiding my disability. This is survival in a very critical world.
Growing up in school, and even in college, I had a few people come up to me and say, "I use to think you were stuck up!" They thought I was purposely ignoring them. They had tried yelling my name really loud or waving with full body, I didn't respond. They thought I was ignoring them. But then in another situation, the lighting might be right, less distractions in the environment and they try to get my attention, I respond. This can be rather confusing for a person who doesn't understand life of a person who is in-between. Different situations create a different avenue of being able to see or hear or not being able to see or hear.
Background noise to a person with a hearing loss is like always being at a ball game with a very bad PA system playing. Hard to hear. Having a loss in different frequencies, creates a situation where noise is distorted. The sounds are not well balanced. Even direction is distorted. Hearing aids are complex. They are artificial hearing. It is not like real hearing, it is mechanical. In addition, I'm blind in one eye. A person could be on my right side waving to get my attention. I may not see them and may not hear them. I may hear my name, but will have to circle around to figure out where it originates. I wish people understood, instead of making judgements.
Talking to more than one person is extremely challenging. It is so frustrating and I feel so sadden when I can't keep up with a group discussion. This really puts a damper on a social life. There are ways to accommodate, but it takes cooperation from others to change their behaviors.
I have been fortunate to be around people who cue me in when the other person wants to put in their comments. I then can shift my head towards them. These people make my life real and make me feel alive again as if I'm a human. Not something to isolate and ostracize. It is awkward for a person at first to do this, but after awhile they get the rhythm.
Sometimes the challenge is, people think I hear/see well, that I compensate well. I do, but it is harder world of being on top of my environment. The effort of others is needed, and it is hard to communicate or explain that they need to help me out a lot, to include me as an equal. That without their help, I feel isolated, even though it appears I am fitting right in. This hidden aspect makes it difficult to communicate.
Life is managed, not cured. I cannot cure my vision nor my hearing. I cannot cure other people into being more sensitive to help me function in their social circle as a normal human being. I can only manage myself. This means I have to choose my social circles carefully. And that if I am not being social or talkative, it means I'm missing a lot. Normally I am the type of person that likes to be right there in the conversation. When it gets too overwhelming, I just stay quiet.
I put effort when I can, and save my efforts when I need self preservation. Sometimes I can't afford to use up energy to reach people. Some people think I may only need to put in 2 times the effort to join in, when they don't realize it is actually 10 times. And at that level it can deplete energy rather quickly. If people could pitch in a little, put in the 2 or 3 times, that would mean I would only have to put in something like 5 times.
My heart is sincere. I want to reach out, but if others can't help meet me with a little extra effort, I deflate fast. I can't afford using my extra effort combined with someone else's extra effort. It is like i'm doing all the work and because I'm the one with the loss, I carry the heavy burden when communication is about two people, not one taking all the effort. I fade, become quiet and then shift to being depressed because I'm not apart of the social circle. Times like these I'd rather be alone than be with a group. Being with a group when you can't join in hurts a lot more than being alone.
Life is isolating enough, and my gratitute for those who take that little effort means the world to me. You allow me to be alive, apart of society and apart of the social group of belonging.
Being in-between has it challenges. You never know when you got information and you never know when you missed information. Accommodations are crucial. Patience on both sides is crucial. It is a unique experience. That little effort that a person gives is like magic once you learn the dance and step on your feet a few times. But the beauty is allowing a person to feel alive, part of the community and accepted.
Stuck in the middle | Care4k9's Blog
Stuck in the middle Care4k9's Blog: Is she or isn’t she? It has to be one or the other, right? If you have some hearing, you must be able to function as a hearing person right? If you see some, you must function as a sighted person right? If you hear on the phone, you must hear fine. If you drive, you don’t have any vision challenges right? Life is black or white, there is no in-between. When you don’t see or hear me, you are just ignoring me, right? You are pretending.
No, not right.....
How can someone in the middle express and show that although they do a tremendous job in appearing normal, that doesn’t mean they do not have a challenge every single day in how to see or hear.
Think of when you catch a cold and how the input of sound just isn't happening. Hearing is difficult. You do hear some, but the clarity is gone. While sick, your vision will not have things in focus. Reading will be more difficult, but you can still see the words.
This becomes a challenge when you have to ask people to repeat or you have thick gummy mucous in your eyes. The world is just fuzzy. You can barely read a computer screen. Hearing anyone takes effort to understand. You just want to go back to bed. Even though during this cold with the changed vision and hearing, you can still see, and you can still hear, but clarity is lost, making it difficult to decipher the meaning of what you saw or what you heard.
This blog is about being stuck in-between. I can hear and see to function, but I am stuck between a world of people who see and hear, and people who are totally deaf plus totally blind. Stuck in the middle. Neither one. I don't see and hear well enough to be considered average or normal, but yet, I'm not severe enough to be labelled legally blind or profoundly deaf. I'm stuck in the middle, that zone that most people do not understand. It is abscure and difficult to explain. People understand black and white, sighted or blind, hearing or deaf. How can anyone understand partially sighted or someone with a hearing loss? That in-between that varies with each person, because there is no consistency. There is no distinction. They are in the zone of in-between.
No, not right.....
How can someone in the middle express and show that although they do a tremendous job in appearing normal, that doesn’t mean they do not have a challenge every single day in how to see or hear.
Think of when you catch a cold and how the input of sound just isn't happening. Hearing is difficult. You do hear some, but the clarity is gone. While sick, your vision will not have things in focus. Reading will be more difficult, but you can still see the words.
This becomes a challenge when you have to ask people to repeat or you have thick gummy mucous in your eyes. The world is just fuzzy. You can barely read a computer screen. Hearing anyone takes effort to understand. You just want to go back to bed. Even though during this cold with the changed vision and hearing, you can still see, and you can still hear, but clarity is lost, making it difficult to decipher the meaning of what you saw or what you heard.
This blog is about being stuck in-between. I can hear and see to function, but I am stuck between a world of people who see and hear, and people who are totally deaf plus totally blind. Stuck in the middle. Neither one. I don't see and hear well enough to be considered average or normal, but yet, I'm not severe enough to be labelled legally blind or profoundly deaf. I'm stuck in the middle, that zone that most people do not understand. It is abscure and difficult to explain. People understand black and white, sighted or blind, hearing or deaf. How can anyone understand partially sighted or someone with a hearing loss? That in-between that varies with each person, because there is no consistency. There is no distinction. They are in the zone of in-between.
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