I have worked at my current job for 7 years. I had 24 jobs prior to coming to this workplace. The challenges I have had working at this place inspired me to start this blog In-between being Deaf-blind back in 2010. I always felt that the people I was around didn't understand my disability. It felt like they treated me as if I had a mild loss and I faked that my disability was more than mild. Some friends or a support system thought I was being too sensitive or exaggerated. I got my confirmation I was right on, last Tuesday.
At my work we have this one bathroom that isn't used as often as the other two. The lights are dim and old florescent. I have a very difficult time seeing in florescent lighting, especially the old bulbs. As I walked into this bathroom with my service dog, a co-worker came out of one of the stalls. Her face is with a darker complexion which made it harder to recognize her. it took me a few seconds. She passed me and went to the sink to wash her hands. As she passed me she said something I couldn't "hear". The bathroom not only was hard to see in, but echos with addition of external commercial sounds. I said to her, "I'm sorry I couldn't hear, what did you say?" and she turns her back to me while she washes her hands and talks. I still continued saying I couldn't hear her, and she then went out the door. Although I couldn't hear what she said, I could tell her tone of voice was with irritation and offense as she rushed out the door. Almost sassy.
I had to use the restroom so I finished my business and then went upstairs, dropped off my service dog in my office and went to her cubicle. I told her that "I couldn't hear what you said in the bathroom." She said, "yeah but I waved at you and you just stared at me." I replied with, " I can't see in those dark bathrooms." With a quick defense response she said, "but you drive!!!" I said yes I do, but the DMV is always checking my driving, in fact I was there this morning. She looked at me with disbelief of I can still drive. i said, driving doesn't have florescent lighting. I can see outside. I explained that driving is different from a dark bathroom. I don't know if she believed me or not.
This experience isn't about educating her, but that the experience was a huge relief to me. I've always known my co-workers have been hostile towards me. They think I fake my disability. They treat me as if I have a mild disability and I pretend to "ignore them" when they wave at me, or "hear more than I let them know." This same person approaches me in a strange way that it is hard for me to reciprocate. She talks really loud, waves adn says "Hi!" and walks away, never giving me a chance to say anything.
I have worked in this same department with this person for 7 years and I have special equipment, I use special hearing devices, wear hearing aids, hold paper close to my face etc. When I first came I gave a small lecture on how to understand those with a hearing and vision loss. I also have a service dog. It is obvious I have a disability, but yet, when i say i can't see something or hear something, they seem to want to disbelieve me. I have worked with some people like this before, but they were few and far between. One or two people at a workplace I can deal with and stay with the people who are more accommodating. However, when it is nearly your whole department, it is rather hostile. It has made it difficult to work in this negative environment for 7 years. I begged management to allow some education and sensitivity training, but they were adamant that they didn't want the focus, which could be negative, to be on me.
I function really well. I have been born with a hearing and vision loss. I have 50 years of experience trying to compensate for my looses. I have had neighbors not realize I had a disability and are shocked to find how well I function. Although this is great adaptation to function well, it also is a curse because people think I'm trying to cheat the system. I'm not.
Hidden disabilities are very difficult and I know I'm not alone in this one. People seem to be more judgmental today than any other time I have lived. I'm so fortunate of how well I have succeeded in life and have risen above. I look more normal than disabled. I am extremely sensitive towards people who seem to have negative thoughts, disbelief or hostility towards me. It seems to be something I've learned over the years being disabled.
I always seem to know when something isn't smooth or a person has an issue with me. I'm always on the money no matter that they say things are "ok". I know. I may not know the specifics, but I do know. Nothing I can do but be quiet about it becasue they will continue to deny it.
It behooves me that someone I have worked with, challenged me when there is a lot of evidence of my disability. I always felt a hint of offense, and this incident was confirmation I was not being too sensitive.
The irony is, she is offended by her ignorance, since I cannot help my disability. She keeps her distance from me and doesn't make herself accessible to me. It makes it hard to explain I have a disability, this is how I function. I have spent a life time teaching people how to interact with me. If they do not want to listen, like this person, and keep their distance, there is nothing I can do.
I have had to develop strength to overcome the tension of my office. They have determined a dislike for me. Even when I got my senior position, many couldn't even look at me anymore. They have created the pernicious gossip, that they are ready to become offensive with me no matter what I do. I don't know what has been said, but it has made it very difficlt to know how to do damage control. But this incident gave me a little information that a problem is there.
I now have the confidence that I can move on. I can be successful in anything I can do. Their negativity will not keep me down, although they try. When they want to be open, and reach out to me, I'm hear, but I can't do anything until they open up. I now know, it certainly isn't me.
Friday, March 06, 2015
Wednesday, September 03, 2014
Performance Anxiety. : Working with a sport psychologist to work through my anxieyt.
Remember, when we are upset, with anxiety or stressed, it does affect our dogs. Some show it outwardly more than others. We get wrapped up in our succeeding, wrapped up in our desires and trying to impress for our egos, but instead we defeat ourselves and stress our dogs. Several people are unaware how much they stress their dogs when it comes to performance. Even if you are a positive trainer, your anguish, disappointment and stress is very punishing to a dog that is very in-tuned to you. I lived this and know this. Throughout the years I put a lot of stress on my dogs. In the later years I have gotten better, and finally fine tuning myself so any time I get to play with my dog is a joyous and fun bond building event. We are human and our dogs are canine.
The setting, a canine nose work trial.
It is my turn to go up to the starting line. I take a deep breath and let it out slowly. I scan the around the element to collect my thoughts how I will work the area. The moment is still. Eyes all on me and my dog waiting for our first move. I cue my dog to "Search" and off he darts. I follow my dog as he leads the way. I let him work since he can smell the odor and I do not know where it is located. As he works, if I feel he is stuck, this is where my performance anxiety kicks in. If my dog didn't find the odor within the first 30-50 seconds, then I know this will be a bit of a challenge.Tthat challenge is what sends my brain into freeze mode. As my anxiety increases, my sensitive dog worries and starts fringing. Fringing is when the dog is indicating on odor, but is not at the odor source. Nose Work dogs are taught to go to source. There are many reasons why a dog will fringe, one of the times my dog Mickey fringes is when I'm frozen, my brain is not working and I'm lost what to do. When my dog alerts at the wrong place for odor, it increases my stress and performance anxiety. This in turns stresses my dog and we get into these fringing cycles. The tension and stress in me is also amplified when people are watching me, and just on the tip of trying to tell me what I did wrong. You see them slightly leaning forward with their eyes a little bit wider. When you have anxiety, criticism is difficult to process. You are in a heightened state and learning is very little. I shut down.
To make matters worse, I have a vision impairment. Completely blind with no light perception in the right eye, while the left eye I see only 20/70 with an excess amount of floaters that can get in the way of my field of vision at the wrong time. I also have a constant white film in my view. My retina has been overly stretched to cover a large eye ball that distorts what I see, thus clarity is lost. I also periodically get flashes of light. When I change light, like coming from outside and going in or vise versa, it takes about 5 or more minutes for my eye to adjust and I get grey or white outs. My ability to see contrast is low and many times I do not see objects because of this. I have only about 35% of my vision to work.
With my vision limitation, I could miss that ever so subtle indication my dog found source if he's in a fringing mode. However, when my Mickey is not fringing, his alerts are clear. That is when I can look like a great handler. But spectators when they know where the odor is, they are able to know if the dog is alerting much more than the handler when they know their dog fringes. People judge. This is a huge stress while others see it and I can't. Their advise usually doesn't help because they do not understand my limitations. My situation needs to be approached in a little bit different way. One way of teaching something is not a one size fits all.
Every person has their particular "fear" thing that causes their performance to be altered. They were able to perform well in their backyard, in their own studio or some other familiar place. Some people have an intense fear talking in front of an audience, dancing at parties, singing in front of friends, or even competitions.
While I am zoning out with anxiety, my brain is flooded with chemicals of my body which changes my thinking process. My vision and hearing perception changes; It won't be the same as in practice. But on the flip side sometimes the brain in flight or fight mode can work for you. If I am not completely zonedout and I can focus, the nerves help me perform better. That's the balance I seek. Use my nervousness to succeed and not let the nervousness turn into anxiety.
The challenge I have seen with Nose Work is, you have to think on your feet in helping your dog, when they haven't found the odors. What area have I covered? Where did my dog alert to odor? Let the dog lead the way, but when a dog is missing the hide, you do need to step in. Stepping in takes a quick thinking process of assessing many factors and trying it out with your dog to see if that helps them locate the hide. This will be places like pockets where odor hangs or where odor pushes to a corner, and the dog can't source where the source is located. The dog's behavior usually gives the indication. However, when you have performance anxiety, trying to think through a process can be hard. It is unlike a rehearsed routine where you build motion memory. I have been in situations I had stage fright, but having practice the routine over 100 times, my body subconsciously knew what to do next. After a few thousand various searches in different environments, I hope to get close to my body subconsciously knowing what to do next.
As I have moved up in Nose Work, I noticed that my anxiety of people watching me was getting worse. I thought as I moved up in the ranks, I wouldn't have this anxiety. This is different from being nervous. Nervous is something where you are excited, but able to perform. Being nervous says you still care. But, my performance anxiety was different. It was crippling and getting worse as I moved up the ranks. Nose Work was starting not to be fun and I was stressing my dog.
I remember from the late 80's how I would shut down when I did sheep herding. When my dog would get too excitable around the sheep, my instructor would take over so my dog wouldn't get in the habit of dive bombing the sheep. But what she was doing is taking over and not teaching me how to teach my dog not to dive bomb. When I was in my very first sheep herding trial, I froze, and the sheep ran right past me with my dog driving behind. I was so use to my instructor taking over, that under stress, I just did the same behaviors as when I was in practice, freeze and let the instructor take over. But, this doesn't work in a trial.
Having grown up a disabled child, I was so use to people taking over what I did. They didn't have patience to walk me through the situation, they just took over. This happens often with disabled children who are not fast enough, don't see something or hear something to take the quick action that an average person does. It kind of takes out the confidence of the person.
What this has done is when someone watches me, I freeze because I think they are going to take over, or make a judgement. People are so quick to tell someone what they are doing wrong, that they don't see where the person is coming from first. They want to tell, not coach or mentor. With so many situations of tell, it created a life long pattern of freezing when ever I did something when people watched me. Even with computers, because it takes me a few seconds longer to find something on the computer screen, I'm constantly having people point it out to me where it is, rather than them allowing me just a few more seconds to do it on my own.
On top of that, just like everyone, we have an ego. We want to do and succeed well. We all want to be regarded as a great handler and people look up to us. This is imbedded in who we are as a person. If we have enough successes in our lives, we have built the confidence, but when you have people demeaning or making judgements on you, like those who have a disability because you don't function as fast, or take a little longer, it takes a toll. You need to really dig down and focus on what you want a lot more.
I have dabbled in dog sports for 25 years. I never had been able to stick to a dog competition until Nose Work. I'm working through my anxiety issues which are allowing me to move forward. Sometimes getting older doesn't solve a problem, but working through it does.
In the book "The Science and psychology of Music Performance: Creative Strategies for Teaching and Learning" edited by Richard Parncutt and Gary McPherson, I find comfort that I am not alone. Even though the book is for musicians, I see the same patterns for an athlete. I guess performing in dog sports would put me as an athlete? What ever, I see the same issues. Paraphrasing the book, it talks about the flight or fight response, but in a performance, we can't run away or punch out the judge! We need skills of cognitive therapy to help our mind set.
Public humiliation is a big fear of people and even the most skilled persons can choke up. The book talks about the fear of negative evaluations by others. Perfectionism, having too high expectations can be a big interference in performance and an over concern about small mistakes and flaws. Too much focus on what is wrong, than what is going well. Performance anxiety is also closely related to other social phobias and characteristic traits of certain personalities. Perfectionists tend to be very self-critical and as a consequence, suffer from low self-esteem. We can't forget self personal control, which can also really cause issues in performance. High personal and social standard together with low personal control showed in a study by Mor, Day Flett (1995) to be debilitating.
High unrealistic expectations tied to a social aspect was more debilitating than high expectation from self. So this means we really are affected by how others perceive us and what they expect from us. This explains why I tend to focus too much on what others think.
An interesting research article, "Effects of a Motivational Climate Intervention for Coaches on Young Athletes’ Sport Performance Anxiety" by Ronald E. Smith, Frank L. Smoll, and Sean P. Cumming from University of Washington, that explains very similar concepts on performance anxiety as the last article. It states:
"Children who are high in sport performance anxiety appear to be especially
sensitive to fears of failure and resulting negative social- and self-evaluation. Passer
(1983) found that high anxiety children worried more frequently about making
mistakes, not playing well, and losing than did their low-anxiety counterparts.
They also were more concerned than low anxiety children about how they would
be evaluated by their coaches, peers, and parents, and they had stronger expectancies
that failure would elicit criticism from these significant others. Other studies
have yielded similar findings (Gould, Horn, & Spreeman, 1983; Rainey, Conklin,
& Rainey, 1987; Smith et al., 2002)."
Focus on mistakes and worrying about failure was also talked about in the other resources on this topic. Further, these children are worried about criticism and how peers, coaches and parents would perceive them. Interesting pattern.
The research article further states that coaches of today focus on not doing well in a particular situation or not winning is feedback. Goals, attitudes and values are extremely important in how a child perceives a game and their performance. Extensive evaluated feedback about their ability reminds me so much of my positive reinforcement training with animals. You see where your child is, you see the final behavior, and set a plan unique to the individual player. Shape them to become better. This article does talk about focus is on improvement and supporting team mates. Support is important in the young ages. I often wonder, were the criticism of kids is what still plays in my head today? I remember so clearly in middle school when playing soft ball, the boys who were smirking at me ran right up to me when I was going to hit a ball. They figured I couldn't hit it well because I was a "retard" who couldn't do it. I did hit the ball over their heads and did see the shocked look on their faces. But this was the attitude I got from many kids when I was younger. They all thought I was a "retard."
Perhaps since kids ridiculed me, teased me and acted towards me I couldn't really do anything, it stuck with me all these years. Even some adults see me as different and patronize me as if I could never succeed as them. I could never rise to "their" level. I got a lot of this in my life. And now I'm working on a plan to change this thinking.
I had a few sessions with a sport psychologist. What a world of difference it made in my performance. I learned to focus what I need and not to clutter my brain with other thoughts that are not productive at that moment. We worked out a plan what to focus on in a trial, step-by-step. When this happens, what are you going to do? I also have a methodical approach now when I come up to the start line. It is all about focos.
Another reason why focus training is so crucial to me is having stage 4 kidney disease, the toxins my kidneys cannot filter out, affect my concentration. It is very difficult to keep focus on thought. The sport psychologist had also helped me to keep focus in other areas of my life which my kidney disease was causing problems.
We have to remember that dogs are sensitive and when we get upset we messed up, they feel this and become stressed. Mickey now fringes less because I am more focused. I reduced my expectations to task, rather than ego dream. For example, focus on how my dog is searching and help them and not think about getting a great score. That comes later and is useless information during your run. Your brain over loads when you think of too many things, so only think of tasks to do well and nothing else.
Saturday, August 30, 2014
Bullies: how to really handle them
Two years ago I went into a Master's program for Conflict resolution and peace building. Because of my kidney disease I had to stop the program. I just couldn't keep up with all the demands of the program and continue to work full-time and keep up with life.
The reason why I wanted to major in conflict resolution was all my life I've had to deal with bullies, from kids in school to co-workers to management. Before this master's program, I read what I could. It seems the more I read, the more I would come up empty. I wanted a solution. People would give solutions, but they were incredibly weak solutions. I found some good definitions. I could pin point what was happening and I was validated. I thought going in the program would give me answers. I came up empty.
Those who are disabled tend to get bullied more. It is the perception of them being "weaker" than their bully. Bully things they are an easy target. Some have been able to assess their bullies and world well enough to learn how to handle it. Survival.
In my real life, when ever I would use a solution I've read to resolve bullying, it failed. Most of their solutions were to tell a teacher or tell a supervisor. Then they could take care of the issue. But what I found out, that you are giving your power to someone else. The lack of power around a bully, now was shifted to giving the power to a superior. Like they are now going to protect me. But that still doesn't solve the problem. It made my life worse.
I realized that bullying is a form of politics. Kids learn how their bullying works in school. That's where they develop their skills. Then when they go out in the real world, they continue their bully tactics because they work. Some adults are former targets of bullies and learned they have to get into a game or be squashed. How one plays the game determines if it turns dirty or not.
I have been someone who didn't get politics, and didn't get the game. The more I didn't get it, the more I suffered. It does pay to pay attention and learn about the social structure of people. Learn psychology as you will. it is a powerful tool. I hate games, I really do, but when you are desperate to survive and desparate to get the bully off your back, Learning politics and playing the game is the only relief you will get.
Bullies pick targets because they can. This isn't to say that the person who is the target of the bully deserves what they get. No they don't!!! But, the target needs to learn how not to be a target. Displays of confident behavior goes a long way. Bullies pick on what they perceive as weak to practice their skill. They get a high on it as they think they rise above. It is dirty and mean, but regardless how wrong they are for doing their bully behavior, we have to learn how to deal with people like this.
Many targets want to be left alone, but the more they show a weakness, the more the bully preys. Now note I say "show" a weakness. Showing a weakness isn't necessarily mean the person is weak. Learning and observing animals, you learn that life is about displays. Even if you think it is phoney, think of it more as a role you must play to survive. You can always stay you, but if you don't want to continue to be bullied, you need to change your display. Bullies will never go away. You may be in a school program that has a strong anti-bullying program. That's great, but out in the real world, you are not always going to have a teacher or someone to keep tabs on those bullies. In reality, many times you are left to deal with them yourselves.
In the workplace, they can harbor some of the worst bullies. What's even worse, sometimes your management has the worst bullies. When you go to them for help, you just opened yourself for the bully management to practice their power trip on you. Their actions are very deceptive. When you ask a supervisor for help, when they are a bully, this becomes a game how they play you and how they play the people who are bullying you. Then your bullying problem has gotten bigger. You now have the co-workers who are bullying you, and now you have a supervisor who is bullying you.
But to be fair, sometimes the management is not a bully and they just don't know how to solve the situation, and in turn make it worse. This again is why the target really must take care of their own bully issues.
There is no one answer. Each situation is unique. People are also a varying factor that finding an answer sometimes takes time. But, trying to get along with people is really politics if you like it or not. We grow up living in the fantasy that people will like us for who we are and you want to be an honest person with integrity. The problem is, sometimes this fantasy is shattered when you are dealing with bullies. Of course we don't want them to have the upper hand, but they have been practicing this behavior since way back. They are more savvy than you and will beat you at this game. They don't have integrity, they are self driven with their power.
the good news, there are many solutions out there. You can keep your integrity. I first recommend to never tell your management, unless there is something illegal happening. Something illegal can be sexual harassment, physical abuse, and other things. The most important thing about something illegal is document well. IN some situations, bullying can get to the point that it changes to something illegal. Document well is extremely important. Tedious, but important. Do not put interpretations in your documentation, only facts. Stick to facts.
Now I realize I am just as bad as those books that do not give a solution. But it is a dance, you need to learn t he music and the steps. Change your behavior and see how that affects people. Learn how to use a display. Remember a display isn't who you are, it is what you show to survive.
I recommend people read books on behavior and how to work with people. Those books help you more than books on bullying. Books on bullying keep you trapped as a victim. Changing yourself isn't about pleasing the bully, but making it so you are less of a target. Learning how to play a game to survive.
Essentially, it is learning how to play the bully. Turn the tables. Study their game, find their weakness. Then use it to survive. yes, we are taught to be good people, but the bully is causing great distress to you. But possibilities of how to handle something is endless. it isn't easy to think up what to do, but start with changing yourself. Learning about the bully and know how to reach them. You don't have to like each other to get along, and that is the goal, to make peace where the bully isn't bothering you. Fantasy is when we hold hands and sing Kumbaya and all get along. Although we want this to happen and it could, don't expect this to be an outcome.
Also, be careful what you show to people. We all hide something about ourselves, so saying "that isn't me" is bogus, because in reality, we never completely show all ourselves. Be careful in being too nice. Yes, be careful in being too nice. Being nice to a bully is just a huge neon sign to a bully they can take advantage of you and use your niceness against you. Yes being nice makes US feel good, but done in the wrong place can make your life miserable. Just know where to be nice.
Learn as much as you can about social status, then can give you an edge. Not to get ahead of the bullies per se, but to assess the environment so you can control it the way you want. We do have that power more than we realize.
Although my examples are broad, I hope they give you a little insight of the world of bullies. it is just my own personal experience being slammed hard by bullies. I've learned to get in with the game and be careful. Sometimes ridding of bullies means getting a new job or career.
Saturday, May 31, 2014
Finding Joy When Everything is Falling Apart
As I have described in details my challenges being in-between deaf-blind in this blog, a new added dimension of challenge has been added. Although I have had kidney disease for 32 years, I was at a low toxic level that the affects were minimal. I couldn't become a professional athlete, but I was still highly functional that it didn't slow me down. About two years ago, my kidney function took a nose dive to a scary level. I just hover above being put on a transplant list. The zone where you are not bad enough, but your health is affected greatly. I am fatigued and in a fog most of the time, I had thought if I just ate better, took more iron pills or rested more, it would go away. Not quite that easy. I had to find something to keep me going, a focus that could make the challenges be in the background. Ironically, it was something that was with me all along. They had more to give to fulfill my life.
Kidney disease is complex. Your life changes drastically and even when you finally understand this, the daily management of your life needs to be micromanaged to the day, the hour, or to the minute. Life is managed to every single item in my day. I need to carefully watch what I eat. If I decide to deviate from that, with the mindset of "oh this one time won't hurt," I pay for it dearly. I have to watch my activity level. If I use a muscle, joint or even a bone too much, I'm in pain for a few days. Pain, nausea and fatigue are nearly daily. I live in a fog that I have to use a lot of mental power to overcome. My clear thinking fades in and out. Any mental energy left over is used to overcome my barriers in my vision or hearing. Creatinine, one of the toxins that builds up in your body with kidney disease, causes memory lapse and focus problems. Every day, frequently at work, I have to redirect myself to get back on task. It is micromanaging myself. This never was an issue before since I had a talent to focus before. Concentration is difficult. I get burned out daily trying to over come these additional obstacles from kidney disease. I keep going. Where I find the drive? I have no idea, because my performance at work isn't that pizazz I once had. I have always thrived to be an over achiever. Today those efforts are not apparent to people. I'm putting out more energy now, but my results are not what they once were. This is hard, very hard on the psyche. Life and social acceptance is about performance and how well you socialize in the politics. I just don't have that ability anymore. That's hard to swallow when you were so use to impressing before, as I no longer stand out. It is crucial that I find my own joy, find my own world and I have found it, it has been with me all along.
When you solve one issue, one comes right after quickly that you don't have time to rest or put it aside, you must deal with it now. This means you prioritize your life. This also means you will irritate others around you. When you had the energy and focus before to fix things or smooth things over, it now has to be tossed aside. Your focus now is survival. No longer can you have social graces anymore.You have to watch your energy meter.
Cover up becomes a default behavior. This is social survival. You can't let people know how bad off you are or they start patronizing you, judging you or demeaning you. They see you look fine, and think you are trying to milk it, or gain more attention. The attention I want is to feel normal. I'm trying hard to regain what I had and it is falling apart. I learned how to cover up, unknowingly as a disabled child to fit in to the world. People expect you to act or perform a certain way, and when you don't, you are labeled socially inept, or someone that isn't apart of the "in group". Even though we think if "in group" as in middle school or high school, I find adults still follow these social patterns of their rules of accepting or rejecting you. Adults can be brutal. So with this adversity, I must seek joy. I need to create my own life and my own haven.
It sucks I can't hold myself together. I have a full-time job, that for someone with my disabilities is really challenging. I need every impulse of energy to focus on trying to be productive. I come home exhausted. This exhaustion is met with despair as my house has so much clutter, I become overwhelmed. I can't keep up with regular maintenance of my house. I remember how in college, what a neat freak I was and kept everything in order. Now I can't.
Doing nothing isn't apart of my nature, but when you are this spent, it starts to become apart of your life. This vicious cycle of feeling horribly guilty for not doing, not cleaning a house that is so overwhelmingly messed up, and the need to sit and rest. I now have to accept doing nothing as apart of my life now. Getting over this reality took a long time. Admitting this enables me to manage myself better. So many times I would get up to clean, to only have fatigue set in and I wanted to sit down. Sit down in a house so messy I dissociated from my life.
My life right now has changed drastically that I have to carefully plan enjoyment in my life. Most enjoyment has been sucked out of my life. I'm burned out of life because I need to put even more effort in extracting joy in my life. With the combination of vision and hearing loss along with Kidney disease, I now feel like a handicapped person. I've had to learn the meaning "work smarter, not harder" to feel life is worth living. It is sad that my life now is about "is it worth living"? Oh no worries, I'm not thinking of suicide and far from it. I just have to work harder in finding joy than ever before. Joy was easy to find before, now I have a mange myself appropriately and plan carefully for joy in my life.
Some days I'm not with joy. Finding and managing joy is exhausting work. I give myself a rest. During these times I noticed people tend to be a bit distance or judgmental of me. I have no energy to tend to them to smooth things over. I'm spent and because I'm human, I'm cranky and my tolerance level is low. This means I have a very small pool of friends. Before, I could over come barriers, I could find that extra umph to connect to others. I had the energy to please other people. I don't have the energy to please other people anymore. Sadly, if I am to connect to others, they need to come reach out me. Which very few people are willing to do. They think I'm "normal" and how dare I expect them to do the work, but they have no idea how spent I am.
My social life is predominately on-line. Some would say that is sad, but when you fight fatigue, it is a blessing to have it. Sadly, my writing suffers more and more each day. I also notice that I'm becoming more of a social outcast. When I think I'm writing a certain way, people are taking it another way. Editing is exhausting for me now. It is a state of exasperation of I don't have the energy to read or write well, but I want to socialize. No one understands, they just make judgements. Then I'm in isolation again.
I keep trying to find light. Something to keep me going, something to look forward to in life. I have had dogs for 27 years, and they have been a big part of my life. I never realized they could give me more joy I had been seeking. While everything around me was falling apart, they were there to give more. My activities with them in nose work, is so meaningful. I tried competition obedience, but it left me frustrated. Mostly the precision and perfectionism got to me. I needed a sport to enable me to measure my progress. A dog sport that I like and my dogs love. I found Nose Work. A civilian sport that simulates drug or bomb detection dogs. The dogs search for an essential oil of either Birch, Anise or Clove. Each competition level has a level of hides and problems for the dogs to sort out.
Doing Nose Work makes me feel I can do something when the rest of my life feels like it is falling apart. I post often about my Nose Work activities on Facebook because it is the one thing that makes me feel I'm not completely handicapped. It gets me out the door and moving my body with purpose. It enables me to feel I still have a life and something to live for while I struggle with kidney disease. This focus enables me to over come travel, over come my vision, over come my hearing, and over come fatigue. My vision does interfere with how I work with my dogs in Nose Work, but I truly believe there are ways around this, I just have to find that right magic. I know it is there and I will feel that i have tapped into something marvelous. My dogs are my life. They enable me to feel the joy that has been robbed from me. Being successful with them enables me to feel less handicapped. It makes fighting kidney disease easier, that life has meaning again. There is hope and i found my life.
Kidney disease is complex. Your life changes drastically and even when you finally understand this, the daily management of your life needs to be micromanaged to the day, the hour, or to the minute. Life is managed to every single item in my day. I need to carefully watch what I eat. If I decide to deviate from that, with the mindset of "oh this one time won't hurt," I pay for it dearly. I have to watch my activity level. If I use a muscle, joint or even a bone too much, I'm in pain for a few days. Pain, nausea and fatigue are nearly daily. I live in a fog that I have to use a lot of mental power to overcome. My clear thinking fades in and out. Any mental energy left over is used to overcome my barriers in my vision or hearing. Creatinine, one of the toxins that builds up in your body with kidney disease, causes memory lapse and focus problems. Every day, frequently at work, I have to redirect myself to get back on task. It is micromanaging myself. This never was an issue before since I had a talent to focus before. Concentration is difficult. I get burned out daily trying to over come these additional obstacles from kidney disease. I keep going. Where I find the drive? I have no idea, because my performance at work isn't that pizazz I once had. I have always thrived to be an over achiever. Today those efforts are not apparent to people. I'm putting out more energy now, but my results are not what they once were. This is hard, very hard on the psyche. Life and social acceptance is about performance and how well you socialize in the politics. I just don't have that ability anymore. That's hard to swallow when you were so use to impressing before, as I no longer stand out. It is crucial that I find my own joy, find my own world and I have found it, it has been with me all along.
When you solve one issue, one comes right after quickly that you don't have time to rest or put it aside, you must deal with it now. This means you prioritize your life. This also means you will irritate others around you. When you had the energy and focus before to fix things or smooth things over, it now has to be tossed aside. Your focus now is survival. No longer can you have social graces anymore.You have to watch your energy meter.
Cover up becomes a default behavior. This is social survival. You can't let people know how bad off you are or they start patronizing you, judging you or demeaning you. They see you look fine, and think you are trying to milk it, or gain more attention. The attention I want is to feel normal. I'm trying hard to regain what I had and it is falling apart. I learned how to cover up, unknowingly as a disabled child to fit in to the world. People expect you to act or perform a certain way, and when you don't, you are labeled socially inept, or someone that isn't apart of the "in group". Even though we think if "in group" as in middle school or high school, I find adults still follow these social patterns of their rules of accepting or rejecting you. Adults can be brutal. So with this adversity, I must seek joy. I need to create my own life and my own haven.
It sucks I can't hold myself together. I have a full-time job, that for someone with my disabilities is really challenging. I need every impulse of energy to focus on trying to be productive. I come home exhausted. This exhaustion is met with despair as my house has so much clutter, I become overwhelmed. I can't keep up with regular maintenance of my house. I remember how in college, what a neat freak I was and kept everything in order. Now I can't.
Doing nothing isn't apart of my nature, but when you are this spent, it starts to become apart of your life. This vicious cycle of feeling horribly guilty for not doing, not cleaning a house that is so overwhelmingly messed up, and the need to sit and rest. I now have to accept doing nothing as apart of my life now. Getting over this reality took a long time. Admitting this enables me to manage myself better. So many times I would get up to clean, to only have fatigue set in and I wanted to sit down. Sit down in a house so messy I dissociated from my life.
My life right now has changed drastically that I have to carefully plan enjoyment in my life. Most enjoyment has been sucked out of my life. I'm burned out of life because I need to put even more effort in extracting joy in my life. With the combination of vision and hearing loss along with Kidney disease, I now feel like a handicapped person. I've had to learn the meaning "work smarter, not harder" to feel life is worth living. It is sad that my life now is about "is it worth living"? Oh no worries, I'm not thinking of suicide and far from it. I just have to work harder in finding joy than ever before. Joy was easy to find before, now I have a mange myself appropriately and plan carefully for joy in my life.
Some days I'm not with joy. Finding and managing joy is exhausting work. I give myself a rest. During these times I noticed people tend to be a bit distance or judgmental of me. I have no energy to tend to them to smooth things over. I'm spent and because I'm human, I'm cranky and my tolerance level is low. This means I have a very small pool of friends. Before, I could over come barriers, I could find that extra umph to connect to others. I had the energy to please other people. I don't have the energy to please other people anymore. Sadly, if I am to connect to others, they need to come reach out me. Which very few people are willing to do. They think I'm "normal" and how dare I expect them to do the work, but they have no idea how spent I am.
My social life is predominately on-line. Some would say that is sad, but when you fight fatigue, it is a blessing to have it. Sadly, my writing suffers more and more each day. I also notice that I'm becoming more of a social outcast. When I think I'm writing a certain way, people are taking it another way. Editing is exhausting for me now. It is a state of exasperation of I don't have the energy to read or write well, but I want to socialize. No one understands, they just make judgements. Then I'm in isolation again.
I keep trying to find light. Something to keep me going, something to look forward to in life. I have had dogs for 27 years, and they have been a big part of my life. I never realized they could give me more joy I had been seeking. While everything around me was falling apart, they were there to give more. My activities with them in nose work, is so meaningful. I tried competition obedience, but it left me frustrated. Mostly the precision and perfectionism got to me. I needed a sport to enable me to measure my progress. A dog sport that I like and my dogs love. I found Nose Work. A civilian sport that simulates drug or bomb detection dogs. The dogs search for an essential oil of either Birch, Anise or Clove. Each competition level has a level of hides and problems for the dogs to sort out.
Doing Nose Work makes me feel I can do something when the rest of my life feels like it is falling apart. I post often about my Nose Work activities on Facebook because it is the one thing that makes me feel I'm not completely handicapped. It gets me out the door and moving my body with purpose. It enables me to feel I still have a life and something to live for while I struggle with kidney disease. This focus enables me to over come travel, over come my vision, over come my hearing, and over come fatigue. My vision does interfere with how I work with my dogs in Nose Work, but I truly believe there are ways around this, I just have to find that right magic. I know it is there and I will feel that i have tapped into something marvelous. My dogs are my life. They enable me to feel the joy that has been robbed from me. Being successful with them enables me to feel less handicapped. It makes fighting kidney disease easier, that life has meaning again. There is hope and i found my life.
Sunday, January 27, 2013
The ups and downs and all around.
Having consistent energy is a blessing. When you have a few days of exhilarating energy, you feel on top of the world. Everything moves smoothly and falls into place. Life takes little effort. People look at you like you have it all together. You feel good about yourself.....at least for those few days. Then your cyclic energy levels take a crash. Your joints are a low level ache, your body feels like it is moving through a Molasses vat. Just a few weeks ago the things you did, didn't take 2-3 times longer. Your veins feel like sludge is moving through them, enabling you from being quick on your feet. Moving takes a lot of effort and mental push. Your thought process is slow, you forget some things, you are looked at kind of strangely like you are not with it. People back off from you, thinking you are weird. Especially if they saw you a month ago being the exuberant energizer bunny. They think you are milking it, that what you are going through is just a little slow down and you should be able to over come it. They don't realize how numb and lack of energy you feel right now. Like having a heavy cold and you don't want to move, but you know you are not sick with a cold. What is this? Why this drastic cycle? Can't I just feel me for a year and have maybe a week I don't feel so hot? Is that really too much to ask? Ok, then how about 3 weeks of bad and the rest I feel alive? Why is that not possible?
You miss key points and people think you are stupid. You know you are better than the way people treat you. Your in sync-ness is just not there. Your ability to blend with people is gone. You know you are a marvel trying to fight through this fatigue that so few understand. They don't care, they just see you as substandard. People have expectations that they must be around people like them. They see someone slow down, there is something wrong with them. They walk away, instead of getting to know you.
You know you do way too much in your life for your energy level, but you don't want your life to be work and sleep. You want to do other things to keep life interesting. You can't keep up with the rest, even the average, so you drag. Those days you do well you jump at them. Those small times that give you hope again you are a normal human. That you can and are capable. That people could possibly treat you as an equal, but they don't.
The people who do well get in their little cliques, while they brush you aside as substandard. You get this over and over and over....it wears on you. It is hard not to really hate people. You try to focus on positive strength, and ignore the ignorant judgement of others. You wish they could be in your shoes for 3 months, while you get to have their "average" body, which seems like the world opened up to you. The heavy wait, the joint aches, the slow movements are gone. I don't want to be perfect, for me being average is good enough. Average I can at least work towards being great because me is great, my body just gives out. As much as I wish I could have another body, I can't. I have to learn how to rise above with what I have. I know I work harder, nobody sees it. It is exhausting. It is so hard to keep up with people and then I'm faced with exerting energy to keep up, or let it slide to conserve energy so I can feel normal and not overly fatigue.
I know if I could have the health and body to enable to show my full potential. It feels so awful being trapped. I walk, I function, then people say, you can always find someone worse. How does that help me? I'm still treated as substandard? I go out to workshops, no one wants to "hang" with me, they do their little chit chat, but don't include me. So I learn to walk away. Too much effort to try and hear and too much effort to remind them all the time. They don't understand how painful and loosing connection this is for me. Such a hard lesson what I have had to learn to accept. It is hard not to hate people. I use a lot of energy every day to think positive. I keep trying to do what I can and remind myself that those ignorant people are very clueless how much you overcome. If they knew, they would marvel at you. But instead they look at you as a freak, while you are isolated an alone. Then your world becomes of yourself. You make your own happiness and make your own life without people. It hurts, but there is nothing that can be done. People want to stay ignorant. You even see how much more mature you are than them. How they dont' see it yet. They a re still stuck in status and popularity. People miss out. I grow from their mishaps.
Tuesday, December 25, 2012
The health challenge
Anyone can go to a senior citizen rec room and listen to the old folks talk about their ailments, aches and pains. You would hear something like, "Oh, if you think that is bad, I have this." And around it goes all day long. Everyone has aches and pains and everyone has to get through something. One time or another, we are all have some kind of pain or ache story to tell. Sometimes, it just feels good to complain about it. Usually people will throw sympathy and that attention of social acceptance just makes you feel validated. But on the other hand, others will roll their eyes and snap, "Quit your complaining, I don't want to hear it!"
Regardless big or small, it is still something we have to learn how to deal. If we get more than one or two things occurring at once, it is more difficult to juggle. I got a scare almost several months back when my Triglycerides were 1173, where the value you want is 150 or less. My cholesterol was 362 and other values were not good as well. These values are telling me that there is thick sludge pumping through my veins. That fear that comes over me and I think, "am I going to croak?" Just before this test, I had slept for three days, wondering what was wrong with me. I had low energy. The blood test also revealed anemia, low Vitamin D and low calcium. Oh fun, anything else? Stress. I had a tight muscle that felt like I had a slip disk in my back. Although a later doctor appointment confirmed no. Then when lying in some grass at a dog training facility, I laid there for a good 10 minutes and my back popped and I felt much better. I then wondered if this was the problem? The next two nights I slept with no pain and didn't get woken up by upper back pain. Oh, I guess I better start going to a chiropractor. Never been to one, but looks like if I have something similar, I know where to go to solve the middle of the night pain.
Earlier this year I was side swiped by having decreased vision and hearing. But I wonder, could I just be so unhealthy now that the sludge running through my veins is affecting optimal performance of my hearing and vision? Could it be?
When your health is down, you don't function to your potential. I also notice that people start acting different around you, as if you are lazy or just need a good kick in the pants. I find it interesting people assume too quickly if you can't function like the average spectrum, they start treating you as if you don't matter. That you are a burden or a drag. You sense a bit of a distance from these people, making all the judgements like "oh get over yourself." Well hard to move normal when you have sludge running in your veins, less vision, less hearing and just over all exhausted from not enough iron and other minerals you need. People seem to get a little put off if they have to put more out for you. Like having toe explain something a bit more, or not understanding why you are not right on your game. People are so ignorantly critical.
I had been on Triglyceride medication, but it has caused other malfunctions of my muscle in my body. If I don't take such medication, I'm headed straight to pancreatitis. I'm one sick girl if I don't watch it. But with this inflammation throughout my body, it hurts to move. Thus, how can I exercise? I try to eat well but I have developed such an addiction to bad foods, this is not helping either. I'm a bit overwhelmed with how to get myself back. Trying to keep up with life has been daunting, exhausting, and exasperating. I try, I really try. Then fall and feel like I need to give up. Why? I miss feeling my bouncy exhilarating self. I need the extra energy to fill in what I can't see and hear to connect to my world. Instead, it is easier to hide, and sleep and do nothing.
Another one of my addictions is social media. I do not get out enough to socialize, so social media is it for me. But then it absorbs me where I am starting to not function and it is interfering not only with my life but my progress to better health. It allows me to escape my world that I know it. I can forget that my house is a mess, that I don't feel well, that I'm exhausted in the evenings. I now have a Place to escape all of what is going on.
Of course very few understand this. They think I"m just lazy, disorganized or something. Those who judge, have such luxury, but they don't realize they also create more oft he problem, the distance and push off vibes they give. This time more than every in my life, I need acceptance. But the true positive thinker I try to be, I think how does this help me? It helps me to find myself to build myself. Since the outside world doesn't understand, I have to create my own world of understanding.
But what I need to do, is how do I not take medication and get this horrific level of Triglycerides down? In that past when I did 2 hours of rigorous exercise, my blood chemistry looked good, but why do I have to do that much exercise? Today I don't want to get up and move. is sad since I was a person who loved to be on the go and move around. It isn't laziness, it is a physiological thing where my body is shutting down. My life depends on me changing.
The good news is things are shifting to the better, but not fast enough to get my body humming a great tune. Take one day at a time, write out my life schedule, and keep moving, that's what I need to do instead of shutting down, is take all mental ability to keep moving.
Regardless big or small, it is still something we have to learn how to deal. If we get more than one or two things occurring at once, it is more difficult to juggle. I got a scare almost several months back when my Triglycerides were 1173, where the value you want is 150 or less. My cholesterol was 362 and other values were not good as well. These values are telling me that there is thick sludge pumping through my veins. That fear that comes over me and I think, "am I going to croak?" Just before this test, I had slept for three days, wondering what was wrong with me. I had low energy. The blood test also revealed anemia, low Vitamin D and low calcium. Oh fun, anything else? Stress. I had a tight muscle that felt like I had a slip disk in my back. Although a later doctor appointment confirmed no. Then when lying in some grass at a dog training facility, I laid there for a good 10 minutes and my back popped and I felt much better. I then wondered if this was the problem? The next two nights I slept with no pain and didn't get woken up by upper back pain. Oh, I guess I better start going to a chiropractor. Never been to one, but looks like if I have something similar, I know where to go to solve the middle of the night pain.
Earlier this year I was side swiped by having decreased vision and hearing. But I wonder, could I just be so unhealthy now that the sludge running through my veins is affecting optimal performance of my hearing and vision? Could it be?
When your health is down, you don't function to your potential. I also notice that people start acting different around you, as if you are lazy or just need a good kick in the pants. I find it interesting people assume too quickly if you can't function like the average spectrum, they start treating you as if you don't matter. That you are a burden or a drag. You sense a bit of a distance from these people, making all the judgements like "oh get over yourself." Well hard to move normal when you have sludge running in your veins, less vision, less hearing and just over all exhausted from not enough iron and other minerals you need. People seem to get a little put off if they have to put more out for you. Like having toe explain something a bit more, or not understanding why you are not right on your game. People are so ignorantly critical.
I had been on Triglyceride medication, but it has caused other malfunctions of my muscle in my body. If I don't take such medication, I'm headed straight to pancreatitis. I'm one sick girl if I don't watch it. But with this inflammation throughout my body, it hurts to move. Thus, how can I exercise? I try to eat well but I have developed such an addiction to bad foods, this is not helping either. I'm a bit overwhelmed with how to get myself back. Trying to keep up with life has been daunting, exhausting, and exasperating. I try, I really try. Then fall and feel like I need to give up. Why? I miss feeling my bouncy exhilarating self. I need the extra energy to fill in what I can't see and hear to connect to my world. Instead, it is easier to hide, and sleep and do nothing.
Another one of my addictions is social media. I do not get out enough to socialize, so social media is it for me. But then it absorbs me where I am starting to not function and it is interfering not only with my life but my progress to better health. It allows me to escape my world that I know it. I can forget that my house is a mess, that I don't feel well, that I'm exhausted in the evenings. I now have a Place to escape all of what is going on.
Of course very few understand this. They think I"m just lazy, disorganized or something. Those who judge, have such luxury, but they don't realize they also create more oft he problem, the distance and push off vibes they give. This time more than every in my life, I need acceptance. But the true positive thinker I try to be, I think how does this help me? It helps me to find myself to build myself. Since the outside world doesn't understand, I have to create my own world of understanding.
But what I need to do, is how do I not take medication and get this horrific level of Triglycerides down? In that past when I did 2 hours of rigorous exercise, my blood chemistry looked good, but why do I have to do that much exercise? Today I don't want to get up and move. is sad since I was a person who loved to be on the go and move around. It isn't laziness, it is a physiological thing where my body is shutting down. My life depends on me changing.
The good news is things are shifting to the better, but not fast enough to get my body humming a great tune. Take one day at a time, write out my life schedule, and keep moving, that's what I need to do instead of shutting down, is take all mental ability to keep moving.
Sunday, December 02, 2012
Cultural Diversity
We think of Cultural Diversity as a diverse group of people people in one place where they come from different geographical areas like other countries. We see them with growing up in a different way, with a different language, different customs, different morals, different communication skills, different clothing, etc. even the way they learned how to approach people is very different. If they move to a place that is different from where they grew up, they may experience a culture shock. They could think people are rude, cold or insensitive. The other observation could happen too, that the new place could be really nice, open, and freer than what they grew up with as a child. Either way, it can be rather overwhelming. Culture shock can be experienced by the country girl on a farm, moving to the big city or vise versa, the tough city girl moving to the country.
Wikipedia has an overview of: Culture Diversity:
"The many separate societies that emerged around the globe differed markedly from each other, and many of these differences persist to this day. As well as the more obvious cultural differences that exist between people, such as language, dress and traditions, there are also significant variations in the way societies organize themselves, in their shared conception of morality, and in the ways they interact with their environment. Cultural diversity can be seen as analogous to biodiversity.[1]"
I can't shake the thought that perhaps, a person with a disability is more someone that has a cultural difference. The reason I ponder this from the way society treats disabled individuals as outsiders. Depending on the disability, they approach communication in a different way; they read in a different way; they socialize in a different way; they walk in a different way; and they process information in a different way. Do we need to view a disability as not an able person but yet their approach in life is different from the average person? Just like not everyone can be a brain surgeon or rocket scientist. Not becoming one doesn't make a person lesser in society. Talents lie on a spectrum and to be exceptionally talented in one area, they are probably dysfunctional in another. That's normal. This si true in a social world, a person that doesn't fit in a particular group doesn't mean they are socially dysfunctional. One group cuold be more right brain creative, while another group is seriously factual with correctness. Two different approaches of communication. Neither one is more correct than the other. They are just different. However, one side will look at the other as weird, stupid or crazy. So why do people put down or look down on those who function different?
A person with a disability may have a limitation in a particular function. Some people may not see the limitation and it can be hidden well. Out of sight, out of mind, then for some it just doesn't exist. They can socially and culturally fit in. Others cannot hide the disability. .
Socially, it is politically correct to accept a person with a disability, but there are still social protocols. I can't explain it, but most people know it. Kind of the who's in and who's not type of social complexities.
An inability can be over looked. It can depend how the person handles themselves. It is so difficult to pinpoint what is culturally or socially accepted and what is not. If someone battles with fatigue it can be misinterpreted as lazy or slow. Someone who is trying to "milk the system." We may not in reality know how much effort they are putting out. Like one person is swimming in something thinner than water, while another person it is like trying to swim in molasses. The latter person is putting out 3-4 times the energy the person swimming in thinner than water, while the person moving as if they are swimming in molasses is looked at as slow, not up to par. The former person is showing speed, quickness that gets everyone's attention. They think they are really something, while they snub the other person as lazy. Outside appearances are what people see.
In general, people do not like slow. They have to see reason and even if they actually see the reason why someone is slow, there is still a certain attitude of lack of ability. They have to be extremely exceptional in other areas to over come their limitation that is so visual. People sometimes mix helping someone with patronization in these situations.
Humans like to categorize. They also like to label. They meet a certain type of person from another country and subconsciously will think all people from that country act or do that way. It is almost instantaneous.It is the same for when someone meets a deaf person, they think they a re all the same and you accommodate them all the same. Just as if someone meets one blind person, they think they are all the same. Not all blind know Braille, not all blind are totally blind, some have a little sight with each person seeing a little bit different. You cannot assume all blind people are the same. They have a distinct culture among them, but they have individual needs related to their blindness. Putting labels on a person doesn't allow the person to tell their story and limits in you getting to know them.
Sometimes a word or a description puts a label on a person.For a few decades, the disabled community has been trying to come up with a word or term that gives a person with a disability empowerment. Originally the term was handicapped, but that term became poisoned because it meant something sickeningly pathetic to certain people. The term handicapped had such a negative connotation that society labeled all disabled in the same category and ostracized them from society. Let's segregate, shun and keep them away from us. So Handicapped was a bad term, let's change it to try and make a person with a limitation more human. The term that was put in its place disabled. Ironically, dis means away from, so disabled means away from being abled. Isn't that a worse term than handicapped? The interesting thing is culture and human society is what poisoned the word handicapped. Today the word disabled is becoming poisoned as well. A person that is less than. That negative connotation is surfacing, "oh yeah that law says we have to hire disabled." Bad association. Two jobs I was hired for, when the "office" found out a disabled person was hired. A wave of a negative "gossip" spread through the office before my first day. Imagine, people already making an assumptions, putting a negative label on me, before they ever met me. What were they really revolting? The term? The disability? They heard a description and term of me, and made assumptions. I wouldn't be an equal player.
As for terms, many people feel language is extremely important, but will attitudes and perceptions undo any word that is chosen to describe a disabled person? When can the human be looked at as a HUMAN regardless of any function they do and do not have? Isn't this how we raise a community to accept people and seek their strengths, rather than focus on a lack of ability in a certain area? Focus on what a person can do will create progress forward and gives empowerment to all.
Why is function so important in a civilized community today? It isn't like we all have to hunt for food and someone who cannot hunt big game or weave a basket is lessor. Look at Stephen Hawkins and what he contributes to society with his knowledge of astrophysics? He has a severe loss of function with his body, not his mind. Not every disabled person can be a genius in physics, but one shouldn't have to be extraordinarily exceptional to be accepted as capable or considered a human being in our society.
Are the disabled viewed as sick? What allows people to look down on a disabled person? That we must patronize and shun to feel ok and safe? Talcott Parson's concept of sick people talks about how doctors will treat sick people different. His article, "The Sick Role and the Role of the Physician Reconsidered." The caring role turns some people into being a bit patronizing.
Perception of people also is changed as they see the fund raisers for Muscular Dystrophy and in the old days, Jerry Lewis would help with the fund raising efforts. Oh these poor, poor children. This advertisement of patronizing this disabled group. Although money was raised, what perception was created? The more they could show how pathetic the situation these children had to live, the more they could get the money to roll in. The "poster" child of sadness to tug on people's hearts to donate money. How did this help the disabled community as a whole? I know many disabled people resented these high profile fund raisers. That is a whole new topic in itself, but for the sake of here, what perceptions towards disabled individuals was created? Most would say they did more harm than good.
This type of awareness can bring too much negative attention. Similarly when work places focus on sensitivity training for the disabled. People will become resentful, why do we have to make them so special? Understanding is what is wanted, but the perception is negative attention. Perhaps if we could do more a cultural difference type of sensitivity training to include all groups from all races, culture, types of people and put disabled humans in there without calling them disabled. Show they are culturally different and how they have to be creative in how they function in the world. Not to be put off by their differences. Perhaps this could bring it together, rather than focusing on "disability" and how pathetic it is.
Even some churches view people with a disability has being punished by God. Which is rather narrow thinking. Even some new age thinkers says that a person who is disabled wanted to be that way. That everything is all generated by our thoughts. I think our thoughts are powerful, but I do believe this is going a bit too far to say we chose our disability, we chose our parents etc. This segregates a disabled person more from society, that we wanted to be outcasts. In all nature, and human survival, we have a need to belong to a community for survival. We inherently want to be included, even psychology will point out that people have the need to be in a group, be it group, family, cult, gang etc. So, I do not follow the belief a disabled person chose to be disabled. Some people wish they were disabled as they think the disabled community gets a lot of perks, but if they did become disabled, they would soon find out quickly, it is not a big happy party.
A variety of perceptions out there and how to change them will be difficult. But my first movement to go in a positive direction is to say that a disability is more of a cultural difference.
Who should be included under the cultural difference umbrella? Only those who are 100% blind or 100% deaf? Cannot walk at all? What about those who are in-between? Not deaf, not blind, but hard-of-hearing or partially sighted? They have more function than someone who has a complete hearing loss or vision loss, but not quote equal to a fully sighted or fully hearing person. They have to modify, change and be creative in how they accomplish tasks with partial sight and partial hearing. Many times the in-between person's limitation is invisible. People do not see the struggle or the obstacles they must go through, but they notice something is different. They just can't put their finger on it. Creating a cultural difference. When a person talks about their disability, the non disabled community will think they are milking the system with their "mild" loss, not realizing they could have a severe loss. Mostly because they cannot see it. I'm not saying that there are not people out there milking the system. There exist and cause more trouble for the people who work hard to appear normal and function the best they can. Again, people making assumptions and labels. Get to know the person before making the label. Know their culture, their abilities and how they function before makign such an assumption.
But even if someone can't see the disability, why does society have a hard time grasping the in-between? They seem to think that you are either 100% disabled, or not. That being in-between doesn't have its challenges. Missing out 50% of what people say, isn't a disability. Getting only 50% of a conversations, you are missing a huge portion and probably misunderstanding the conversation. That is a huge disadvantage.Some of those with a hearing loss get the, "Oh you hear when you want to" comment from hearing people. Like hearing on an amplified phone is proves you can "hear" when trying to hear someone across the table from you in a noisy restaurant where your hearing aids pick up more background noise than the person talking, you are faking your hearing loss because you can't hear them. The communication shuts down. The person with the hearing loss can't hear and the other person assumes attitude or social personality flaw. Similarly to someone who is culturally different.
When we can set aside the label and get to know the person and their culture, a whole new world of understanding. When someone emerges themselves into deaf culture or into learning how to volunteer for the blind, they see the person, not the disability. Soon, terms like disability disintegrate and the individual and their uniqueness from others with disabilities is seen. This is similar to being able to see the variety species of flowers or little critters in the vast large forest, rather than just seeing the forest at a distance. Instead of saying that's the forest and keeping at a distance, walk up, keep eyes open, explore, interact and a whole new understanding forms. It is about getting to know a person. Building a relationship that can be professional, friendship, or intimate. Then the term disability is gone, forgotten, because the person opened up and got to know the person. No segregation, categorizing, assumptions and labeling. Just as people have narrow thoughts, these narrow thoughts and prejudices trap a person. They must over come enormous barriers and are limited to where they can intermingle, because most people keep those labels and prejudices in their minds and can't open their minds to learn about all kinds of people.
Wikipedia has an overview of: Culture Diversity:
"The many separate societies that emerged around the globe differed markedly from each other, and many of these differences persist to this day. As well as the more obvious cultural differences that exist between people, such as language, dress and traditions, there are also significant variations in the way societies organize themselves, in their shared conception of morality, and in the ways they interact with their environment. Cultural diversity can be seen as analogous to biodiversity.[1]"
I can't shake the thought that perhaps, a person with a disability is more someone that has a cultural difference. The reason I ponder this from the way society treats disabled individuals as outsiders. Depending on the disability, they approach communication in a different way; they read in a different way; they socialize in a different way; they walk in a different way; and they process information in a different way. Do we need to view a disability as not an able person but yet their approach in life is different from the average person? Just like not everyone can be a brain surgeon or rocket scientist. Not becoming one doesn't make a person lesser in society. Talents lie on a spectrum and to be exceptionally talented in one area, they are probably dysfunctional in another. That's normal. This si true in a social world, a person that doesn't fit in a particular group doesn't mean they are socially dysfunctional. One group cuold be more right brain creative, while another group is seriously factual with correctness. Two different approaches of communication. Neither one is more correct than the other. They are just different. However, one side will look at the other as weird, stupid or crazy. So why do people put down or look down on those who function different?
A person with a disability may have a limitation in a particular function. Some people may not see the limitation and it can be hidden well. Out of sight, out of mind, then for some it just doesn't exist. They can socially and culturally fit in. Others cannot hide the disability. .
Socially, it is politically correct to accept a person with a disability, but there are still social protocols. I can't explain it, but most people know it. Kind of the who's in and who's not type of social complexities.
An inability can be over looked. It can depend how the person handles themselves. It is so difficult to pinpoint what is culturally or socially accepted and what is not. If someone battles with fatigue it can be misinterpreted as lazy or slow. Someone who is trying to "milk the system." We may not in reality know how much effort they are putting out. Like one person is swimming in something thinner than water, while another person it is like trying to swim in molasses. The latter person is putting out 3-4 times the energy the person swimming in thinner than water, while the person moving as if they are swimming in molasses is looked at as slow, not up to par. The former person is showing speed, quickness that gets everyone's attention. They think they are really something, while they snub the other person as lazy. Outside appearances are what people see.
In general, people do not like slow. They have to see reason and even if they actually see the reason why someone is slow, there is still a certain attitude of lack of ability. They have to be extremely exceptional in other areas to over come their limitation that is so visual. People sometimes mix helping someone with patronization in these situations.
Humans like to categorize. They also like to label. They meet a certain type of person from another country and subconsciously will think all people from that country act or do that way. It is almost instantaneous.It is the same for when someone meets a deaf person, they think they a re all the same and you accommodate them all the same. Just as if someone meets one blind person, they think they are all the same. Not all blind know Braille, not all blind are totally blind, some have a little sight with each person seeing a little bit different. You cannot assume all blind people are the same. They have a distinct culture among them, but they have individual needs related to their blindness. Putting labels on a person doesn't allow the person to tell their story and limits in you getting to know them.
Sometimes a word or a description puts a label on a person.For a few decades, the disabled community has been trying to come up with a word or term that gives a person with a disability empowerment. Originally the term was handicapped, but that term became poisoned because it meant something sickeningly pathetic to certain people. The term handicapped had such a negative connotation that society labeled all disabled in the same category and ostracized them from society. Let's segregate, shun and keep them away from us. So Handicapped was a bad term, let's change it to try and make a person with a limitation more human. The term that was put in its place disabled. Ironically, dis means away from, so disabled means away from being abled. Isn't that a worse term than handicapped? The interesting thing is culture and human society is what poisoned the word handicapped. Today the word disabled is becoming poisoned as well. A person that is less than. That negative connotation is surfacing, "oh yeah that law says we have to hire disabled." Bad association. Two jobs I was hired for, when the "office" found out a disabled person was hired. A wave of a negative "gossip" spread through the office before my first day. Imagine, people already making an assumptions, putting a negative label on me, before they ever met me. What were they really revolting? The term? The disability? They heard a description and term of me, and made assumptions. I wouldn't be an equal player.
As for terms, many people feel language is extremely important, but will attitudes and perceptions undo any word that is chosen to describe a disabled person? When can the human be looked at as a HUMAN regardless of any function they do and do not have? Isn't this how we raise a community to accept people and seek their strengths, rather than focus on a lack of ability in a certain area? Focus on what a person can do will create progress forward and gives empowerment to all.
Why is function so important in a civilized community today? It isn't like we all have to hunt for food and someone who cannot hunt big game or weave a basket is lessor. Look at Stephen Hawkins and what he contributes to society with his knowledge of astrophysics? He has a severe loss of function with his body, not his mind. Not every disabled person can be a genius in physics, but one shouldn't have to be extraordinarily exceptional to be accepted as capable or considered a human being in our society.
Are the disabled viewed as sick? What allows people to look down on a disabled person? That we must patronize and shun to feel ok and safe? Talcott Parson's concept of sick people talks about how doctors will treat sick people different. His article, "The Sick Role and the Role of the Physician Reconsidered." The caring role turns some people into being a bit patronizing.
Perception of people also is changed as they see the fund raisers for Muscular Dystrophy and in the old days, Jerry Lewis would help with the fund raising efforts. Oh these poor, poor children. This advertisement of patronizing this disabled group. Although money was raised, what perception was created? The more they could show how pathetic the situation these children had to live, the more they could get the money to roll in. The "poster" child of sadness to tug on people's hearts to donate money. How did this help the disabled community as a whole? I know many disabled people resented these high profile fund raisers. That is a whole new topic in itself, but for the sake of here, what perceptions towards disabled individuals was created? Most would say they did more harm than good.
This type of awareness can bring too much negative attention. Similarly when work places focus on sensitivity training for the disabled. People will become resentful, why do we have to make them so special? Understanding is what is wanted, but the perception is negative attention. Perhaps if we could do more a cultural difference type of sensitivity training to include all groups from all races, culture, types of people and put disabled humans in there without calling them disabled. Show they are culturally different and how they have to be creative in how they function in the world. Not to be put off by their differences. Perhaps this could bring it together, rather than focusing on "disability" and how pathetic it is.
Even some churches view people with a disability has being punished by God. Which is rather narrow thinking. Even some new age thinkers says that a person who is disabled wanted to be that way. That everything is all generated by our thoughts. I think our thoughts are powerful, but I do believe this is going a bit too far to say we chose our disability, we chose our parents etc. This segregates a disabled person more from society, that we wanted to be outcasts. In all nature, and human survival, we have a need to belong to a community for survival. We inherently want to be included, even psychology will point out that people have the need to be in a group, be it group, family, cult, gang etc. So, I do not follow the belief a disabled person chose to be disabled. Some people wish they were disabled as they think the disabled community gets a lot of perks, but if they did become disabled, they would soon find out quickly, it is not a big happy party.
A variety of perceptions out there and how to change them will be difficult. But my first movement to go in a positive direction is to say that a disability is more of a cultural difference.
Who should be included under the cultural difference umbrella? Only those who are 100% blind or 100% deaf? Cannot walk at all? What about those who are in-between? Not deaf, not blind, but hard-of-hearing or partially sighted? They have more function than someone who has a complete hearing loss or vision loss, but not quote equal to a fully sighted or fully hearing person. They have to modify, change and be creative in how they accomplish tasks with partial sight and partial hearing. Many times the in-between person's limitation is invisible. People do not see the struggle or the obstacles they must go through, but they notice something is different. They just can't put their finger on it. Creating a cultural difference. When a person talks about their disability, the non disabled community will think they are milking the system with their "mild" loss, not realizing they could have a severe loss. Mostly because they cannot see it. I'm not saying that there are not people out there milking the system. There exist and cause more trouble for the people who work hard to appear normal and function the best they can. Again, people making assumptions and labels. Get to know the person before making the label. Know their culture, their abilities and how they function before makign such an assumption.
But even if someone can't see the disability, why does society have a hard time grasping the in-between? They seem to think that you are either 100% disabled, or not. That being in-between doesn't have its challenges. Missing out 50% of what people say, isn't a disability. Getting only 50% of a conversations, you are missing a huge portion and probably misunderstanding the conversation. That is a huge disadvantage.Some of those with a hearing loss get the, "Oh you hear when you want to" comment from hearing people. Like hearing on an amplified phone is proves you can "hear" when trying to hear someone across the table from you in a noisy restaurant where your hearing aids pick up more background noise than the person talking, you are faking your hearing loss because you can't hear them. The communication shuts down. The person with the hearing loss can't hear and the other person assumes attitude or social personality flaw. Similarly to someone who is culturally different.
When we can set aside the label and get to know the person and their culture, a whole new world of understanding. When someone emerges themselves into deaf culture or into learning how to volunteer for the blind, they see the person, not the disability. Soon, terms like disability disintegrate and the individual and their uniqueness from others with disabilities is seen. This is similar to being able to see the variety species of flowers or little critters in the vast large forest, rather than just seeing the forest at a distance. Instead of saying that's the forest and keeping at a distance, walk up, keep eyes open, explore, interact and a whole new understanding forms. It is about getting to know a person. Building a relationship that can be professional, friendship, or intimate. Then the term disability is gone, forgotten, because the person opened up and got to know the person. No segregation, categorizing, assumptions and labeling. Just as people have narrow thoughts, these narrow thoughts and prejudices trap a person. They must over come enormous barriers and are limited to where they can intermingle, because most people keep those labels and prejudices in their minds and can't open their minds to learn about all kinds of people.
- Jody Ambrose Actually, not that I have tons of spare time, but I am kind of intrigued by your situation and would be kind if interested in writing something for publication. The bigger picture of your particular situation is that the rest of us, even the deaf or the blind, really can't imagine what it's like for you navigating day-to-day life. And my recent experience working with PTSD and TBI is similar, in that the "high functioning" cases are the ones that really struggle the most because the people around them consistently underestimate their difficulties and they feel so much pressure to maintain those expectations.
Christy Hill Oh man Heidi's Helpers Yes! why are we not evolved more? I felt that some years back it was easier. I wonder if the entitlement generation resents that "I'm special" and that they have to give me "special treatment" when all I'm asking is for accommodation.
Heidi's Helpers Jody, the unspolen pressure you mention is monumental and on a day to day basis takes a lot of 'recovery' and 'maintenance' time. Performance anxiety is so high to try to meet peole's mixed expecattions which are not clear. Higher-functioning or 'invisible' disabilities bring on complex self-esteem and self-determination consequences, that are in private and the mainstreamers do not see.- Christy Hill Jody Ambrose WOW! YES! Right on the money! You said it so well!!!!! I'm in grad school now in Negotiation, Conflict Resolution and Peace Building. my papers will focus on this topic. What can a disabled person do themselves to change their behaviors to be understood and have more inclusion.
- Christy Hill Heidi's Helpers what an awesome gem you just wrote. Head right on the nail! YES! SO well said!
- Heidi's Helpers sometimes onlookers are taken aback by a disabled person's "will to succeed, will to thrive." and judge them as not disabled, which is a set up for failure
Jody Ambrose Hell, I might be able to crib a pretty decent article just out of the comments in this thread.
- Christy Hill I need to get back in blog writing....but ugh have other things I need to do. Mickey's hide has "cooked" enough, so time to see if he finds his scent. We haven't done this in a few months.
Subscribe to:
Posts (Atom)