Welcome to the second installment of a series that I’m calling: “More than Meets the Eye.” Each week of the summer (and possibly into the fall and winter months, depending on the number of responses I receive), I am honored to share with you interviews from members of the disability community.
The goal of this project is to raise awareness about the diversity of the disability community. The words and ideas expressed in the interviews belong to the participants, not me. This project is welcome and affirming to all members of the disability community. By sharing our stories, we can develop empathy and understanding for one another as we all travel throughout the journey of life.
Tristan writes, “A good title for my interview would be “I’m Just Like You”. Although I have some experiences unique to my blindness, I am just like other women my age. I have the same feelings, aspirations, flaws and strengths. I feel love, attraction, lust, hate and envy. I can be helpless with laughter, electrified with rage, soft with empathy and compassion. I expect to be told off when I’ve hurt someone or made them feel bad. I listen to people’s problems and have mine listened to. I’m vain about my hair, I love summer fragrances and chunky jewelry. I detest tomatoes and olives.”
She continues, “In short, I am as well-rounded and complex as you, the able-bodied reader. I’m not a walking poster child for disability. I’m not the same as the blind lady you used to work with thirty years ago, though we may have some experiences in common.
“I think the sooner people realize that people with disabilities are humans with the same human needs as other people, not just know it intellectually but actually know it without having to think about or articulate it, the better as far as disability rights are concerned. Then people won’t think that web accessibility is a favour that you do, because the right to open up your web browser and access any content will belong to everyone. Same with being able to access a building if you’re in a wheelchair, or be able to take in the spoken content of a lecture if you’re hearing impaired.”
She concludes, “If you think of me as being just like you, who take these rights for granted, if you can relate to me without the barrier of low expectations and fear of saying the wrong thing, then my life is going to be better for it.”
Interview with Tristan Clare
What is your name?
Tristan Clare. First name Tristan, last name Clare. I should also tell you that I am female. Most people who only have written contact with me assume that I am male because I have a male name. Normally I wouldn’t mind, but since you are writing about me I thought I should clear that one up
How old are you? (No need to share your exact age, but perhaps you could say if you identify as a teenager, a young adult, a senior citizen, etc.)
I am in my early forties, though I feel about thirty. Please don’t call me middle-aged though, it’s a terribly stodgy thing to be called.
Could you share a little bit about your disability? In what ways to you identify as a member of the disability community?
I have a genetic condition called LCA (Leber’s Congenital Amaurosis) that affects the retina in the eye. I generally identify as blind or low-vision, it depends on how important it is that people know I have sight.
My low vision is purely functional, it’s a tool in the toolkit and not always a terribly efficient one. I need both eyes to see anything properly, which is why I fail most standard eye tests. If I cover one eye or the other, I have a lot more trouble with visual perception.
The most useful thing about having vision is for mobility. Road crossings and escalators aren’t occasions of fear for me because I can see the top of the escalator or the other side of the road. I am really sensitive to glare though, so I wear sunglasses when I’m out in full sun, otherwise I’m literally blinded by the light.
My brother also has the same condition. He’s totally blind. He struggles more with mobility than I do, but it hasn’t stopped him from living and working alone in developing countries. I think having a brother who was also blind has really shaped the way I interact with my blindness and the wider world. We had no sighted siblings, so ours was a household where we were the norm. Our parents made sure that we interacted with both sighted and blind kids and, till I was about ten, I didn’t know there was a difference. When I found out I was outraged and furious that anyone would think I was inferior or less than. I don’t remember being left out of games because I was blind, I enjoyed the same kinds of toys as my cousins, I got to go on rides at fun parks, swim in the ocean, ride bikes, roller-skate and jump on the trampoline in our backyard. I just don’t remember it being a major issue in my childhood and so I have never felt particularly alienated from the “sighted world”. So my disability is a characteristic that is way more important to everyone else than it is to me.
What do you think people see when they look at you?
I think the first thing they see is a long, white cane with a big red ball on the end, rolling rapidly from side to side. I know this because, on the rare occasions I’ve been able to get around without a cane, I am treated differently. If people just think I’m a bit cross-eyed instead of blind, I do get more respect and I don’t have to field a barrage of curious questions about what’s wrong with my eyes.
But most people do get past the cane, especially if they get a chance to talk to me. So the person they would see is a short woman with fluffy, dark hair that could be anything from purple to auburn to chestnut-brown, depending on what colour I had when I was last at the hairdresser’s. They would see pale skin, small hands, scooped necklines, accessories that match my clothes. If it’s daytime, they would see my very cool and stylish wraparound sunnies. If it’s summer, they might hear the jingle of metal bracelets on my bare arm, or the creak of my favourite leather jacket in a cooler season.
I really hope they see a person moving confidently through the world and not caring about being stared at. I often think one of the perks about blindness over other physical disabilities is that it’s easier to ignore the stares. Other blind people might disagree with that, but it’s been my experience that if I act like I’m not being stared at, then people tend to go about their business more quickly because there’s really nothing to see.
What do you wish people would see when they look at you? What parts of your identity are most important about yourself?
I wish people would presume that I’m competent, instead of being surprised by it after the fact. People often get really nervous if they see that I’m out on my own, even though I’m moving at a fast clip and, if I didn’t have a cane, would look like I’m purposefully getting to where I want to go.
What they don’t know but I wished they did is that I love exploring new places. I feel pretty good about myself once I’ve navigated a tricky crossing, traversed a carpark full of moving traffic or located a doorway in a really stupid place, like halfway up a flight of stairs. Not that I’m an adrenaline junkie, I don’t go putting myself into danger or anything, but I really like thinking my way out of tricky situations and it makes me feel disempowered when someone just has to tell me that they were watching me the whole time and gee aren’t I doing well?
I also wish people would believe that I’m happy, that my life if just as rich as theirs. I don’t doubt that full sight, not the little bit that I have as a supplementary tool, is wondrous to behold. I’ve read enough descriptions of lush landscapes, many-coloured skies, vistas of twinkling city lights, the glimmer of wet concrete on a rainy night in the city, to know that having full sight must be da bomb. Sometimes, I’ve even been lucky enough to have a glimpse of it myself. I remember being blown away the first time I saw the full moon and how bright it was.
But what most sighted people forget is that humans have five senses, not one. I can get a blast out of hearing birdsong or my favourite vintage Faith No More album or the sound of water running down a plughole. I can enjoy the piquant scent of onions frying or the summery fragrance of my favourite coconut and lime perfume. There are hundreds of exciting textures that are literally at my fingertips.
My life is not a barren desert of weightlessness. And no, I don’t particularly want to hear that if you were … like me … you would kill yourself. It’s very rude to say that to someone because you’re saying that their life is of less value than yours.
What common misconceptions do people often have about your or your disability? What do you wish people understood about your disability?
Apart from the above, I wish people didn’t think my disability was an affliction, or that if I pray hard enough it will go away, or that everyone is perfect and able-bodied when they die and go to Heaven so at least there’s something I have to look forward to.
I was once accosted in an airport by a man who wanted to pray for me. Literally the first words out of his mouth were “Can I pray for you?” I’m not kidding, this guy didn’t ask my name, or anything about me. He just saw affliction and assumed that I would want him to pray it away. He also said it loud enough so that everyone in the airport could hear, so it was totally performative and virtue signaling.
I happen to think that praying for someone is an intimate thing. My best friend, who is a devout Christian, says she has prayed for me sometimes. She prayed that I would get my current job and I did. She has never prayed that I would be “healed” and have full sight, because she says that God made me the way I am for a reason.
I’m an atheist so I don’t believe in God, but I like the idea that I’m just fine as I am. I wish that is what people would see about me, that I’m just as I should be. Should there be a cure I can’t say a definite no to it, but I’m not sitting around waiting for it either.
What makes you happy? What are your passions or your joys in life? Can you share a little bit about your big picture?
Words are my greatest passion. Short words. Long words. Individual words. Words strung together into long sentences. Words that make up a story or a lyric poem or a great song.
When I was nine, I read The Children’s Dictionary from cover to cover without getting bored. I haven’t quite managed a full-sized dictionary yet, but it’s definitely on the bucket list.
I’m also really passionate about Braille literacy. Although I have sight and can read enormous print, I was lucky enough to be taught Braille first, at the same age that sighted people learn to read print. It has always been my primary reading medium and, although I enjoy a well-narrated audiobook, it’s the one I choose when I want to savour the rich language of the Classics or if I need to retain information long after I’ve read it. It makes me really angry when I hear professionals in the field of vision impairment say that Braille is on the way out, like it’s a good thing. Braille is the only access to a written language that blind people have. We use the same part of the brain to process Braille text that sighted people use to learn print. Statistics have shown that the greatest percentage of employed blind people are Braille readers. I’ll give up campaigning for the rights of blind people to physically read once sighted children are not taught to read print anymore.
I also love singing, playing the guitar and having a good conversation. Shy people really like me because I can talk a blue streak and carry the conversation. I’m attracted to good listeners, as long as they can add to the conversation too. I also really love a good argument and playing Devil’s advocate. It’s fun to argue a point, even if I agree with the person I’m arguing against.
How has the COVID-19 pandemic impacted you as a member of the disability community? What do you wish the rest of the world understood about your personal experience of today’s post COVD-19 world?
I’ve been really lucky in that I have been only lightly affected by the pandemic. I come from Australia, which is in the Southern Hemisphere. We are geographically distant from most of the major pandemic centres and, although we have had some cases and have had to go into isolation, we were lucky enough to be able to close our borders before the virus really took hold. We are by no means Covid-free and one of our states is currently experiencing a second wave, but generally things are better here than for countries in the Northern Hemisphere.
Personally, I’ve been really lucky because I still have a job that I can do from home. I’m aware that plenty of people, even non-disabled people, have lost their jobs due to the pandemic, particularly those in the hospitality and travel industry. The day all the cafes and restaurants closed, Centrelink, the agency that provides government benefits, had desperate people queuing up around the blocks of every office. So, when I feel bored or frustrated with the isolation, I remind myself that I still have a job and the technology to be able to do it from home. My boss has been incredibly supportive, she saw to it that I got a laptop with the right software on it and she keeps our team together through daily Zoom catch-ups which are part-meeting, part-informal catch-up.
Lately we have been able to do some work back in the office. I can’t wait to go back full-time, but the government is still advising caution for returning to the workplace, so I don’t want to put myself at needless risk either.
I think the worst thing about the pandemic for me was having less human contact than I am used to. Before the pandemic I worked the traditional 40-hour week in an office, plus I saw friends and family at night and on the weekends. When we went into isolation, the only regular, non-virtual contact I had was with the barista at my local café, which is about ten minutes’ walk from my house. I realise that I’m incredibly privileged to have a café within walking distance of my house and that the way to get there is safe and easy to navigate. I actually taught myself that route, with the assistance of Aira and now I walk it without assistance. So access to good coffee near my house is something I have got out of the pandemic.
Seriously though, I think the pandemic poses unique challenges for people with disabilities, especially in areas where access to grocery delivery and in-home services have been casualties of the pandemic. For me, grocery deliveries were suspended for about two weeks. This was due to idiots panic-buying and signing up for online grocery deliveries when they were perfectly capable of shopping for their own. As a consequence, both our major supermarkets suspended grocery deliveries until they could put a Priority Assistance Scheme in place. I was lucky, my mum took me shopping and we bought a lot of things that would last, like noodles and rice and other non-perishable goods. I was glad to have someone to go with, shopping alone in that atmosphere would have been really unsafe. All the staff in the store would have been too busy to render assistance, people were snatching goods off shelves like it was the after-Christmas sales and everyone was really tense. If anyone had coughed there would have been a riot. It was awful, but fortunately I only had to do it once. Luckily Uber Eats was still running and they had branched out into convenience stores, so I could get perishables like milk and bread and yummy things like chocolate and salty snack foods. Then the Priority Assistance Scheme was launched so normal delivery service was resumed, though there were weeks where loads of products were out of stock. For some reason, people out here were fixated about stockpiling toilet paper. There were even some low-lifes buying up multiple trolleyloads, then selling them on Ebay at inflated prices. Same with hand sanitizer. I hope they were all found out and made to give back their stockpiles. Anyway, the day I first found toilet paper in with my groceries I was so happy I invented a new song, called The Toilet Paper Conga. I sang it to anyone who would listen. Probably annoyed the tripes out of a few people that day.
I think the thing I’d like people to know about having a disability during the pandemic is that all the systems we have in place that keep us on a level playing field with the rest of society can disintegrate in an instant when the world goes mad and thinks the apocalypse is coming. If you don’t have family and friends to turn to I imagine life would be pretty hard right now.
If you have a friend or neighbor with a disability, ask them how you can be of assistance. If they decline your help don’t be offended, they may already have systems in place. If they accept your offer to get their groceries but you’re afraid of contagion, ask them about accessible places for you to leave their groceries so they can get them without having any contact.
Social distancing can be hard for some people, especially if you’re blind. Having some sight really helped me out in this respect, but I struggle to locate the low-contrast, non-tactile markers they have in shopping centres. If you see a blind person who is not social distancing don’t abuse them for getting too close, offer to show them where the social distancing marker is. Don’t grab them, they’re probably as afraid of catching the virus as you are, so laying hands on them without warning could freak them out. It would anyway, imagine for a second what you would do if someone came up behind you and grabbed you without saying who they were or what their intentions are.
Most of all, just be kind. If your friend is nervous about venturing out even if restrictions are over, you should respect that. People have all sorts of trauma going on in their lives and this year has been a real catalyst for all sorts of traumatic events. Also, many people with disabilities also have other health conditions that may mean a case of Covid19 could be more dangerous for them or their families.
Do you have a business, book, website, or creative project that you would like to talk about? Feel free to share about what brings you joy! Are you working on something right now that you’re really excited about?
I have a novel percolating inside my head. I realise it’s no good to anyone in there, but currently the idea is too big to get out. Imagine, if you will, trying to manoeuvre a very large sofa through a narrow doorway. If you don’t dismantle it into smaller chunks first, it will get stuck halfway through.
That’s about where my novel’s at right now. I need to joina writing course so I can get going on it. I find that the structure and inbuilt community of writing courses helps me to write but, as soon as they’re over, I’m back to where I started.
So I don’t have anything tangible to show for it, but there are bits and pieces of my novel all over the forums of various online writing courses. I have also completed a Masters in Creative Writing, but that spawned a different novel, a very naïve piece of juvenilia that I don’t plan to show to anyone, ever.
Please be sure to check back next week for another interview in our summer disability awareness series, More than Meets the Eye.
More Disability Awareness Posts
Blind People Write Books! Interview with award-winning author J.E. Pinto (More than Meets the Eye #2)
Blind with a Vision: Carolyn McGee (More than Meets the Eye #1)
My name is Rev. Rebecca and I blog about faith, books, and disability awareness. Please subscribe by typing your email into the box labeled, “Subscribe,” so that you never miss a post! I am also the author of the Through My Good Eye: A Memoir in Verse and The United Methodist Church and Disability.