The Birth of an ElephantI was first diagnosed with PD in September of 2008. PD is a progressive disorder of the nervous system that affects your movement. It develops gradually, sometimes starting with a barely noticeable tremor in just one hand. But while a tremor may be the most well-known sign of PD, the disorder also commonly causes stiffness or slowing of movement. PD affects different people "differently." For me, it made my legs extremely weak, affected my balance, and dramatically changed my voice. The official diagnosis was very difficult for me to handle. This certainly wasn't what I envisioned for retirement. I was looking forward to lots of travel, fishing, and my passion—sports announcing. But as PD would have it, I had to surrender my driver's license. As if that wasn't enough, I lost my announcing voice. As a fiercely independent person, I became dependent and isolated. My whole world changed overnight.
Advice for Other ElephantsOnce you have a name for your illness, you should seek out a professional who specializes in it. It may take a while for your doctor to determine the mix of medications that will do you the most good. At the same time, identify a therapist. It is very important for you to talk about your malady. You have to make it real before you can accept it.
Practice AcceptanceYes, acceptance is very important. What else can you do? Going the "Why me?" route simply delays your life adjustments. Yes, you can still lead an interesting, fulfilling life. As I said to my son Aaron, "I can't believe this is happening to me." His response was, "Well it is!" His message was clear. Quit wasting time, accept it, and move on. I sure did raise some smart sons.
Practice ThankfulnessCounting your blessings with a sense of pleasure and wholeness is a way to be thankful. People with a strong sense of gratitude, love and appreciation don't necessarily have more than others; they aren't "luckier." They simply recognize and see more beauty in their lives. A 2003 study suggests that people who count their blessings are generally happier and healthier than people who don't. If you ever feel as if anything in your life isn't "enough," try practicing an attitude of thankfulness. You might realize how good you have it after all.
How to Deal with Elephants in the RoomTreat people with disabilities as you would anyone else:
- Welcome them if they are new in your class or workplace.
- Never stare at them or act condescending or patronizing.
- Don't focus on the disability.
- It is important that you treat them as equals, talk to them as you would to anyone else, and act as you would normally act if a new person entered into your life.
How to Deal with THIS ElephantReturning to the long-time friend and colleague who was just looking at me, rather than put him on the spot, I answered him in the form of an open letter to all my dear friends in the STC chapter. Here's what I said:
Dear Friends: It's time we have a heart-to-heart talk about my Parkinson's disease (PD). At our last chapter meeting, I realized that my failure to do this a long time ago has placed you in an awkward position: how do you deal with "the elephant in the room"? So here it is, straight from the elephant's mouth. It has taken me a very long time to accept Parkinson's disease (PD), retirement, aging, leaving behind "Da Voice," surrendering my driver's license, etc. The way things came down on me at nearly the exact same time made things extra tough. I was unable to ease gracefully into retirement, but I am doing much better. IT IS OKAY to make kind comments, ask specific questions, etc. There is no need to avoid the subject. I no longer wish to be "the elephant in the room." Google will tell you everything you ever thought you wanted to know about PD. For each person, the symptoms vary; for example, I do not have the tremors (thank goodness). The symptoms I do have come and go unexpectedly and vary in intensity. Here is what you can expect:
To summarize, I am aware that I look weird, act weird, and talk weird. It's like living in a building and watching it fall apart around me. Well, I'm still in here! Please know that in my brain, I am still a wild and crazy guy! It's fine to talk to me as you always have, and don't give a second thought to anything else. Does that help? If not, ask me anything you like. I love each and every one of you.
- Stiff muscles (rigidity) and aching muscles. Rigidity can also affect the muscles of my legs, face, neck, or other parts of the body and may cause muscles to feel tired and achy.
- Slow, limited movement (bradykinesia), especially when I try to move from a resting position. For instance, it may be difficult to get out of a chair.
- Weakness of face and throat muscles. Talking and swallowing may become more difficult. Speech becomes softer and monotonous. Loss of movement in the muscles in my face can cause a fixed, vacant facial expression, often called the "Parkinson's mask." By the way, it is perfectly okay to ask me to repeat myself.
- Difficulty with walking and balance. Sometimes, I might take small steps and shuffle with my feet close together, bend forward slightly at the waist (stooped posture), and have trouble turning around. I'm trying to remember not to walk that way.
- Cramps in the muscles and joints.
- Freezing, a sudden, brief inability to move. It most often affects walking.
- Fatigue and/or sleepiness may come on very quickly without warning.
- When anxiety is high, I'm behind on sleep, etc., I can sometimes get a little emotional. If it happens, just keep smiling and talking. I'll snap out of it. Emotional and physical stress tends to make the symptoms more noticeable. Sleep, complete relaxation, and intentional movement or action usually reduce or stop most of the symptoms.
How to Create an ElephantSimply ignoring people with disabilities because you think they may not want to discuss it may make them feel inadequate. They may think you don't want to deal with them as fellow human beings or that you are trying to avoid being asked for help. It all boils down to this:
- If your disability makes you think of yourself as the elephant in the room, you will be that elephant.
- If you treat someone with a disability like the elephant in the room, he or she will become that elephant.
Technical communicators who are involved in usability and user experience, accessibility, business analysis, and design will definitely benefit from reading Kel Smith's thoughts on "the importance of embracing universal design principles throughout innovation cycles". Catch up with Kel Smith on Twitter at @KelSmith. Get more information about the book via the book twitter handle: @digitaloutcasts or the Digital Outcast Facebook Page. You can follow @morgan_kaufmann on Twitter or on the Morgan Kaufmann Facebook Page. You might catch some discount codes there!
[the book] will address key trends in technology and their relevance to forgotten populations. Example case studies include: iPad apps for cognitive therapy, increased utility of virtual worlds, the use of video games to improve patient adherence, support programs through mobile platforms, the rise of Web accessibility, and the impact of federal regulations on the digital marketplace.