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HoH Pride: Marcia and Alexia's story

Mon 1 Dec 2014 In: True Stories View at Wayback View at NDHA

When I met Marcia Taylor she had a cute smile, piercing blue eyes and huge, inexplicable calf muscles visible below her shorts. She proudly told me she also had an alter ego: 'Meat Train' and was a derby girl. I had only a vague notion of what that meant, but it explained the calves. I was attracted to the cheeky sense of humour that seeped through the bravado...and intrigued as to why she sat at the edges of our group, looking at her phone but not talking to anyone. Her friendliness when I had talked to her didn't seem to fit with the aloofness (bordering on rudeness) that I was now seeing. I invited her to join in and she shyly pointed out her hearing aid, telling me she couldn't really, because she was Hard of Hearing and group conversations were not really her forté. I wanted to talk to this girl. I REALLY wanted to talk to her. So I said, kind of cheekily, "well, you could talk to me." Over time Marcia showed me the depth of emotions she felt about her hearing loss. Most of them negative. We would go out to barbeques at friends’ places and have a great time, the skaters predictably talking derby, the other widows and I adding our two cents in here and there or (lord forbid) talking about something else entirely. Then the sun would go down and we would go home. The barbeque still in full swing but without the sun to illuminate her friends’ mouths, Marcia was shut off from the conversation and all I had to do was see her face to see the sadness ebbing through. I'd squeeze her hand and let her know I got it. Give her a kiss and make sure she knew I didn't mind going home with her. The same would happen at pubs. The loud music, the dim lights. Unless she could grab someone for a 1 on 1 conversation it was just too hard. Too hard and too depressing. Then there were the turns. The Meniere's turns where Marcia would be fine one minute and green the next. I'd turn to look at her during a movie and her eyes would be pleading with me, tears close and her bottom lip trembling. "I don't feel very well" she'd say and she'd usually close her eyes and try to sleep it away. With every turn there was palpable fear. Every turn meant nausea and vertigo, feeling absolutely rotten with no way to medicate the feelings away or speed up the recovery time. That is, except for her lime milkshake and meat pie combination she'd worked out over the years could fortify her gut against the feelings of nausea if eaten as soon as she started to feel sick ... or maybe it was just that it gave her something to throw up. At the worst point it was weeks of feeling like this. At the best we could go many, many months with nothing. Nothing she told me about anyway. Turns also, more frighteningly, meant the possibility of losing more hearing. We didn't really talk about the possibility that each could be the 'last one' and that the last of her hearing could be stolen at any time. A couple of times, knowing I had done sign language classes a LONG time ago, Marcia had asked me to sign with her. She was learning, but I was shy. Embarrassed by the fact I had forgotten 99% of what I had once been so proud of. We put it off. One morning I got a call and it was Marcia in tears. She'd been involved in a car accident. Her car was totalled. I raced to pick her up and, relieved she was okay, we carried on. Over the next few days I started to realise her hearing was worse. She wasn't hearing me when she normally would have. She was constantly looking confused when I talked and asking me to repeat myself. We had to face the fact that the car accident had done something. The audiologist confirmed that the impact of the other car from the right and the air bag from the front had meant more hearing loss and more temporary vertigo. Apparently, inner ears are quite sensitive things. In February I had an amazing opportunity to travel to Japan and check out the disability scene there. I met amazing inspiring people pushing for change and was so excited about the chance to talk to people about issues I was passionate about. I was also acutely aware that Marcia was having a big turn at the same time. It was horrible. I couldn't have done much for her if I was there anyway but it broke my heart to hear she'd had to put a call out on Facebook to see if anyone could come and get her from the floor of the public toilet at the Wellington Zoo. She couldn't walk and she certainly couldn't drive. It was her derby friends that came to help her. I came home and yes, more hearing had gone. Marcia was sliding down into a dark hole of fear and sadness. More than anything she was scared she was going to end up alone. No sign language to communicate with the Deaf community, no hearing to communicate with the world she was slowly leaving. I rallied the troops. Went behind her back and told her closest friends and family what was happening and asked them to let her know they were not going anywhere. It helped immensely. We organised sign classes and started from the basics. We had pictures of signs up all over my house and together we all started learning. The fact that a bunch of people from Marcia's derby league came to learn too was just awesome. At derby her teams started to get excited about the idea of making signs up for different plays and at team dinners or drinks a couple of people were practicing their new signs from across the room or table with her. We found that we could now go out for a romantic meal and chat the whole night through. We were limited by our vocab sure, but sign is incredibly expressive and, even if you don't know a particular sign you can make yourself understood through facial grammar and body language. Talking in this way can be incredibly funny and it felt good to know we could still talk in loud situations where her hearing aid was rendered useless. The biggest change however, came from left field and was something we could never have predicted. Some comments made about her and an exclusion from a team in the sport she loved suddenly meant that her hearing and what it meant in terms of her ability to Block or Jam were thrown into the spotlight. I saw in Marcia at the same time both devastation and defiance. She had only recently even started to tell people she met in customer service situations that she was Hard of Hearing instead of trying to hide it. Now that she had started to accept it and realise it wasn't something to be ashamed of, she had had it thrown at her as a deficiency, a lack, and even worse, a liability to her team. One morning in the midst of the storm surrounding the very public discussion of these comments she turned to me and said "I think I get the idea of Deaf culture now. It didn’t mean much to me before but now, I think get it. I'm Deaf. I can't change it, it's part of who I am. But that doesn't make me less." Everything that has happened since has been a blur. On a whim we decided to make a Facebook page. As a distraction. As a bit of a hit back at the notion people could or should be excluded based on one aspect of themselves. We had no idea if there were many other Deaf and HoH people involved in Derby out there but we decided there must be and made the page 'worldwide'. One month later and we have 1000 people who follow our page. We've found 24 Deaf and HoH skaters, Referees and Non Skating Officials from New Zealand, Canada, Scotland, USA, France, Sweden and England. And more are contacting us all the time. People who didn't have the money for hearing aids have been given some. People whose teams didn't know they were HoH now do. People are talking about a Deaf and HoH team at Rollercon next year. People are sharing their stories and others are learning that hearing loss is something that affects so many people, of every different age, gender, country and for a variety of different reasons. There are so many different things that cause hearing loss. Everyone’s story is different and there’s a whole spectrum of how people feel about it, ranging from embarrassment and grief to pride and being absolutely content with life. Hearing loss is shown, on our page, to be both an attribute and only one aspect of who a person is. One of the most important things we wanted to achieve with the page was to ensure that people who are Deaf and people who are HoH are on an equal playing field (or track?) with each other. How people identify is a very personal thing. It signifies where people are in terms of acceptance and it also says a lot about how our society still views the notion of disability. Why is it still a negative? Are people with a disability still seen as less valuable in this day and age? Disability is just a consequence of human diversity. Like skin colour, sexuality or body shape. It makes our world a far more interesting place, but our world needs to get with the program and realise it’s 2014. Discrimination is so passé. And Marcia? I think she’s finally proud of being HoH. That doesn’t mean she doesn’t wish every day that she could have her hearing back, but now she knows she's not alone, although I keep telling her she never really was. The couple are off to Texas this week. After the story about the discrimination Taylor faced went worldwide, queer roller derby team Vagine Regime International invited her to come and play in their show bout at the world cup.     Alexia Garbutt - 1st December 2014

Credit: Alexia Garbutt

First published: Monday, 1st December 2014 - 10:43am

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