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.
Something Big is Happening in 20132013 is a special year. STC turns 60. And the U.S. Federal Communications Commission (FCC) says that by 30 September 2013, "100% of new video programming shown on U.S. television with captions must have captions when shown online." Yes, that is what the FCC internet captioning deadlines say. This is due to the law known as 21st CVAA, or the Twenty-First Century Communications and Video Accessibility Act of 2010. Who knows how that ruling will affect technical communicators? This is a U.S. ruling for television, but these things have a way of trickling around the world and to other industries. With globalization, there is no trickle. A ruling in one country can affect the work you do today, regardless of where you are based. Perhaps you are not in a job affected by all this today, but where will you be tomorrow? If captioning is somewhere in our techcomm futures, why wait for a deadline? Why not try it out today?
How to Caption Videos?It's actually quite easy. Ridiculously easy, I'd say. I presented a little tutorial on captioning with YouTube back in 2010 at both the We Accessibility London Unconference and the Technical Communication UK conference. You need to download the slides to get all the juicy details from the notes. Members of STC can also read this tutorial re-written as a magazine article for the January 2011 edition of the STC Intercom. Once you get all excited about captioning, I recommend reading DCMP's Captioning Key. There are also resources available at the National Center for Accessible Media at WGBH. NCAM is "dedicated to achieving media access equality for people with disabilities", so they're pretty cool.
Who cares?"What's 3 minutes? Only a select group of people will see - or express interest in - this short video." In that "select" group of people, you will find some who have some kind of hearing issue. They can be hard-of-hearing. They can be watching your video on a device where they cannot use the speakers, or where they may not want to use the speakers at the moment. If you are excited about your video, ensure that everyone can enjoy it. There might even be members who are - gasp! - deaf. Here's a beautiful quote from Eric Stoller in a blog post on Vimeo and closed captioning.
Communities care about all of their members … not just the ones that can hear.Let's show some STC community love. Go forth and study the details of the STC 2012 Summit video contest, but make yours the real winner with captions!
PS Super BonusSo captioning was too easy for you? Here's a bonus. Try audio description. It's pretty amazing to hear that in action. Think about all the dramatic movies you have seen where the baddies are chasing the goodies, and you are sitting on the edge of your seat. If there is only dramatic music, but no dialog, how is a no-or-low-vision person supposed to follow the action? They listen to movies with audio description. That can really test your script writing skills for a video. How do you tell your visual story in words that are read between dialog segments in the video or movie? If you are curious, the DCMP Audio Description Key can get you started. I wonder how a 3-minute video of highlights from the Summit with no dialog would sound when given an audio description treatment?
Why Did I Make a TranscriptionTom is well-known in the technical communication community, and I've nudged him about transcribing his many videocasts on his blog. (I'm referred to in the interview, but not by name!) With that visibility, he could be a great ambassador for accessibility practices. He responded by saying I could offer to transcribe his videos. My thought was that all his followers could offer to do just one transcription each. That would spread the load and get the job done. I am too involved in too many projects already, so I honestly couldn't manage a lot of transcriptions. Catch-22. However, Brenda is a friend, another advocate of accessibility practices soon to give birth to a book on the topic, and a perfect subject for a transcription. I transcribed the video!
How Did I Make the Transcription?It took me 35 minutes to just transcribe the 6 minutes and 51 seconds, and I don't think I am a super (fast) typist. I had two windows open. One was the browser with the video and the other was TextEdit (simple text editor on Mac). My procedure was to play a snippet of the video, press the spacebar on my keyboard to stop it, toggle to TextEdit and type the text I had heard, toggle back to the browser with the video, and press spacebar to start it again. Repeat until finished! I only fixed major fumble-finger typos as I transcribed. I left simple typos for the review pass-through. When i finished the transcription process, I still had the text and video windows side by side. I played the entire video and read my transcript while listening, making edits as I went along (and stopping the video while I did that). I didn't time my editing phase very well - both the re-listen/review and general editing - but it was definitely under 15 minutes. Perhaps I could complete this step more quickly if I used a fancier authoring tool. I was also a bit conscious of the time because I was doing this as a demo of the entire process. I also debated (with myself) how much fixing to do. I wanted to capture the informal tone of the interview, so I left grammar oddities as they were. That threw me with regard to punctuation. I added where a long stream of words might just be a bit much to understand. In other words, I spent some extra time on thinking about a strategy. Another time, I could speed things up, having thought this through. Summary: 50 minutes for almost 7 minutes. 7 minutes typing for 1 minute talking? I know an experienced or a speedy typist could do better. I also know I could take this script and upload it to the YouTube system for captioning. That can be another lesson for another day.
The Transcript of the Brenda Huettner Interview at STC10In the transcript, TJ stands for Tom Johnson and BH stands for Brenda Huettner. TJ: Hi, this is Tom Johnson at idratherbewriting.com. We are at the STC Summit in Dallas, Texas, and I'm talking with Brenda Huettner. She's working on a book if you listened to the other podcast with Dick Hamilton, she's working on a book called "Communicating with Everyone". So she's really an accessibility guru and I am hoping that Brenda can give me some real practical advice for how I can make my website more accessible. I have written text in the form of posts, I have audio podcasts, I have videocasts, I have images. So Brenda let's start with the videocasts. What can I do to make them more accessible to people? BH: I would suggest the first thing to look at is providing a written transcript for people who can't hear. It's a little bit easier than doing captions on the video, but as long as there's a text version then deaf people can still get your content. TJ: So now actually somebody from the Accessibility SIG recommended that I do this as well and YouTube has come out with captioning which might work but in my attempts to use it, it was kind of a little off. Actually a lot off. Ha ha. How do… how do… I imagine a common objection is that people just don't have time to create these transcripts. What's your response to that? BH: Essentially I would say that if you're taking the time to create the content, the video, or whatever you're creating, you are limiting your audience by not providing access to everyone. And if you are happy with half the audience you might otherwise have, that's certainly up to you if it's not a, if it's a site that doesn't come under Federal regulation, but why would you want to limit your output? You're putting it out there to share with all of us. Let's share fully. TJ: OK. So usually when people think oh making your site accessible, when they think about accessibility, they often think oh, there's not that many deaf readers or not that many blind readers, but I was sitting at the table with the other people from Google today, a whole string of them, and they told me that once you do machine transcription of YouTube videos you can then translate them 'cause they have auto-translation as well. So there I can begin to see where yeah that's a lot of people, everybody who doesn't speak English basically who I'm excluding, but the transcription I'm guessing is gonna be kind of poor. Do you think a poor transcription is better than no transcription? BH: I suspect that you're gonna get a different answer to that one from everyone you ask but I would rather see a poor transcription than none. It's sort of like if I'm working and I suddenly get a piece of text I need in a language I'm not that familiar with but I really want to know what it is, I can go to one of the inexpensive online free translations and I get close enough so that I can determine if I need to pursue it further. A transcription of any kind will at least give people the idea of what your content is if they want to then pursue other mechanisms. There are automated uh screen reader or what have you that might give them more options. TJ: So talking about transcription let's move into the written text part. BH: OK. TJ: So my text on my site isn't that large. I think it's 12 pixels or something. What's a good size font for improving readability? BH: I would say that you don't want to set a head font. You want to allow the viewer your audience to make the font whatever is comfortable for them. So you use relative sizes and you allow the people to use their own software to make it as big as they need to make it. Different people will have different needs. TJ: So when you say use relative sizes are you saying rather than using font size equals 12 px you use like 1.1 dot em. Is it em versus the px? BH: It's typically if you say it's plus one which means one bigger than default or plus three if it's a heading. TJ: So is it better to just put, I've seen the font plus and minus buttons on sites but it seems like that requires more work from the reader. Why not just put it in 14pt font. That's a little bigger. 14. Anyway, a little bigger or do you think it's just better to add the control or do both? BH: I would say allow your users to change it to however is going to work for them. Different people will have different needs and someone who can read a 14 would be happy with that, but somebody else might need an 18 and you're not going to be able to set one number that works for everybody. So let them choose. TJ: So let's talk about one last thing. Images. BH: OK. TJ: People who don't read images or don't see images well would probably need alt text but uh are there any other advantages to doing alt text besides improving readability? I've heard that it increases your SEO your search engine optimization as well? BH: That's true. The alt tag becomes part of what your search engines can find. The problem is that if you're just using alt tags for SEO, you're not describing the photo enough for the people for whom it ought to be why you're giving the alt tag. You want your graphics to be very descriptive. The other thing I'd like to add about graphics is to be really careful of colorblind, red and green and there are several others, 'cause that does throw people off who might not otherwise even complain about it. They just look and see a grey square. TJ: Alright Brenda. Thanks. If people want to know more about you, do you have a website you want to point them to? BH: Actually I would love it if people looked at my Twitter page. I'm at Twitter.com/bphuettner and that's my primary output at this time. TJ: Alright Brenda. Thanks for talking with me. BH: Thanks, Tom. End of transcript.
A computer-science summer academy at University of Washington introduces deaf and hard-of-hearing students to high-tech careers. Seeing few deaf academics and almost no deaf people earning doctorates, UW computer-science professor Richard Ladner, a son of deaf parents, started the program with National Science Foundation funding. In its third year, the nine-week intensive program recruits ten outstanding 16-to-22-year-old math and science students from across the U.S. Seattle Times reporter Lynn Thompson says, "For many of the participants, it's their first glimpse inside the high-tech world. For some, it is the first time as students that they have been able to spontaneously talk to their classmates." Participant Josiah Cheslik describes the isolation he felt in high school as the only deaf student. Cheslik hopes to do research into technologies to bridge the gap between the hearing and non-hearing worlds. "He noted that several new technologies, including texting and GPS systems, were first invented for people with disabilities."
If you are in the Seattle area in August, the students' animation projects will be screened publically on the evening of the 21st in the Paul Allen Center for Computer Science and Engineering on the University of Washington campus.
See "Summer program opens high-tech world to deaf students" on the Seattle Times website.