Guest Post by Chelsea MacLeod
Do you find craptions funny? Think closed captioning is only for “a few deaf people”? Read what one woman has to say about captions and why they need to be clear and accurate. The changes in her hearing may not be obvious to outsiders, but she depends on captions to engage in the wider world. And although her attitude is positive, she and the other perhaps 10% of North Americans who are hard of hearing or deaf still struggle with alienation, isolation, and missing out on art, culture and communication. Here is Chelsea MacLeod’s story. In the last section, I’ve highlighted her feelings. As an advocate for excellence in closed captioning and subtitling, I’m baffled as to why the Canadian government has failed to enforce the high standards that are legislated and why it has only paid lip service to the deaf/Deaf/hard of hearing. Calls for better quality have been made for 30 years! Accessibility through excellent captions is not an expensive frill: it’s a right that can be addressed and planned for in the post-production budget.
If captions are unavailable, I usually pass on participating.
I began to notice a significant change in my physicality and level of hearing in 1996.
I was at an Edmonton Oiler playoff hockey game. We were sitting in the nosebleeds, two rows from the very top. In Edmonton, hockey is extremely popular—it is like the life blood of the city—and the home team was winning. Describing the crowd as wild is a gross understatement. The whole place was electric, in a way that was beyond merely sound. It was an intensely energetic experience, in that I realized I was feeling sound in addition to hearing it. (This is difficult to explain, but I believe this was the beginning of an almost heightened sensory awareness.)
Each time they scored, the noise in the arena was literally deafening. I remember a pop or some kind of release occurring in my right ear over the course of the game, but I didn’t think too much of it. By the time it was over, I was so dizzy and nauseous that I could barely walk out of the arena on my own.
I had no idea what was happening to me. I spent the rest of the night and the next day unable to get off the couch. My whole world was spinning. I couldn’t really ground myself to determine what was up or down. This was my first experience with vertigo and the symptoms of Ménières disease, although I wasn’t aware of it as such at that time.
After a few days, the physical sensations passed, and I went on to normal life. I had periods of experiencing the vertigo off and on again, but I chalked it up to a heavy school and work schedule and simply tried to get more rest to mitigate the symptoms. In short, I was a graduate student with a part-time teaching schedule and various odd jobs, and I was living on coffee and convenient foods. In retrospect, I can safely say my nervous system was completely shot.
Fast forward, almost ten years later. In 2003, I gave birth my daughter. It was a joyous occasion despite a difficult labour and an emergency C-section. Again, I suppose my entire physical system was stretched to the limit. I developed a bad infection in the hospital and required large doses of antibiotics. My recovery period was slow and steady, but I had Chloe, and we just spent our days together getting to know each other with feedings and regular nap times.
Pretty early on, I realized that if I was sleeping on my left side, I wasn’t able to hear her when she was crying. I began a series of testing at a Rehabilitative Hospital in Edmonton where they not only tested my hearing levels but also my balance, coordination, etc.
The diagnosis was Ménières disease. I had 20% hearing ability in my right ear. My left ear also showed some damage, but it was relatively minor.
At the time, they presented a few options I could pursue that required more antibiotics and invasive surgery. I declined and opted to see what I could do to treat the symptoms naturally. I began an acupuncture and herbal-medicine protocol. I did not notice any changes to my hearing levels, but I did begin to see the effects of addressing certain aspects of my nervous system by way of meditation, diet, and increased relaxation. This seemed to keep the Ménières at bay, but if it got really bad, there was nothing I could do but surrender to it, lie down, and be with my body until the symptoms subsided.
In terms of hearing loss, this is when I began a process of learning to adapt and manage the changes to my hearing levels. I began to lip read pretty naturally. I would turn my head to position my left ear to a speaker or to any sound. I began to listen to music with headphones to direct the sound more effectively. I also began to use closed captions when watching anything. If there were no captions, chances were I wouldn’t be able to watch it. This included going to movies.
During this time, I contemplated hearing aids but felt like I was managing all right without them, and so I decided against it.
Funnily enough, at Christmas 2013, my dad made me promise that I would get some hearing aids. It had always really bothered him that I wasn’t able to hear fully. I put it off for a while and then felt badly that I was not honouring my promise to him, and I booked an appointment at the Canadian Hearing Society. I went in for another round of testing, and it was revealed that I had progressively lost more hearing in my good ear.
I signed up for a pair of hearing aids immediately and, needless to say, they opened up the world to me. I really have my father to thank, as he was the catalyst. Incidentally, the sensory input of sound was so profound to my system that it took almost a full month until I was able to wear the hearing aids all day long. It was like I had to go in stages in order to condition my ears to all the sounds they were able to hear again.
One day in 2015, my partner and I were downtown at rush hour, standing on the sidewalk. I started to feel my balance go; I got shaky and began to hear electrical currents all around me. It was like I was hearing sound emitting from street lights and the air itself. By the time we were in a taxi, I could barely hear anything. My hearing aids could not keep up. It coincided with another Ménières episode, and I thought my hearing might return if I rested. However, after 24 hours, there was no change. I booked in to my audiologist immediately for more testing and to amplify my hearing aids. Without my hearing aids, I was pretty much stone cold deaf. But even with them, I could barely manage daily life.
Also during this time, I saw more doctors, naturopaths, and herbalists. I even underwent hyperbaric oxygen treatment because I had read that, for acute hearing loss, high amounts oxygen could restore hearing loss if it was done right away, as soon as possible after the traumatic event.
The hearing tests revealed that my left ear had less than 20% hearing ability. My right ear had also decreased slightly in ability, but it was now my dominant ear. I remember thinking of the irony of all those years I had referred to my right ear as my bad ear. Now it’s my good ear. From then on, I made a commitment to myself to refrain from talking about my body negatively in any way. I just decided both my ears were good and that they were doing the best they could.
About a year after that, I began to notice I had become quite isolated, as meeting up with people, socially in restaurants or anywhere it was even slightly noisy, was pretty much out of the question. I think I didn’t notice it so much because I am blessed with a really supportive family and I have a busy and full life. All the same, I felt a need to connect with others and to be comfortable with who I was becoming without feeling shy or like I couldn’t keep up with conversation.
That’s the main reason I wanted to take up ASL. I felt like cultivating a community that was not hearing dependent—where I could communicate freely with others and learn to express myself in a visual way.
As I have progressively lost the sense of hearing, visual communication has heightened and taken precedence. And this brings me to the crucial role of closed captioning in my ability to experience the world around me. I use captioning on every type of media I can. If captions are unavailable, I usually pass on participating. Captions are my way of accessing vital information, art, culture and entertainment.
Captions that can’t keep up or that are garbled or inaccurate don’t serve anyone.
They not only distort the story or message that is being conveyed but also alienate anyone who requires them to receive information. This includes not just words but also sound experiences like laughter or a doorbell chime.
Sensitivity to captioning is the same as having sensitivity to written or oral language. How it is intended to be received by an audience is as important as translation, in order to accurately communicate anything from feelings and ideas to concepts and current events. Captions connect people. They engage a sense of belonging to the wider world and, when done well, captions have the potential to inspire a variety of interests and curiosities, not only those of the deaf and hard of hearing community.
While I’ve had hearing issues (Ménières disease, hyperacusis, and tinnitus) for about 30 years and do a fair bit of lip reading in noisy environments, I wanted to share the emotional and practical impacts of craptions and captions on someone with more hearing loss than me. I met Chelsea at the Canadian Hearing Society where we study ASL, and I'm grateful to her for being willing to share her story as a guest post for Reel Words.