Tag Archives: fear

Your Fear is Not my Reality

21 Saturday Oct 2017

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I was recently given an opportunity to speak at a conference attended by (among others) social workers, HR professionals, mediators and educators. To share a platform with so many innovative thinkers (some of them well-known) was an incredible honour for me.
After I spoke, regarding (primarily) disability and employment, I took questions from the audience. One of the questions has stuck with me in the weeks since that conference.
Is part of the problem the fact that people with visible disabilities embody a very real fear of one’s own potential of acquiring a disability? When facing the embodiment of that fear, do we project our fears onto that person because their reality scares us?

I had to pause and think.

The reality is, we all – as human beings – have things that scare us. Some of us are afraid of heights, while others can jump out of airplanes. Some of us love traveling, while the idea of leaving the comforts of home is terrifying to others. There are gourmet chefs out there who know people who are afraid of burning the house down if they turn on the stove. Whether fear is rational or not, it’s there, and fear is human.

How it relates to disability?

It seems that fear of one’s OWN disability – because it could happen to anyone – IS projected onto the person living that life. You are not likely – at age twenty or forty – to suddenly wake up in the morning and learn you’re Caucasian rather than the African-American you always believed yourself to be. Nor will you wake up tomorrow and suddenly find yourself – at thirty or fifty – attracted only to men when you’ve been attracted to women your whole life. But you could, conceivably, find yourself either physically or mentally impaired or disabled due to any number of variable causes from medical misdiagnosis to vehicular accidents, assaults, or any number of other biological or physiological factors. It’s true that disability shows no particular favoritism; it IS the only group that anyone can join at any time.

To avoid the disability label, sometimes people go to extreme lengths. Vision can be viewed as sacred, even at the potential of costing a child’s life. Disabled people frequently hear that a person they are talking to would rather kill themselves than be disabled.

Is disability so hard, really?

Or are attitudinal barriers – piled on to the challenges of disability itself – really what’s hard about living with a disability?

These thoughts all jumped around in my head as I stood in front of all of those people. I said some of the following in response, and wish I had said more.

Fear of sudden disability onset IS terrifying. If I woke up tomorrow and I couldn’t move my legs, or if I couldn’t hear my husband speaking to me, I would be devastated. I would try and find out anything I could to make things different. If they couldn’t change, if my condition became permanent, I would be sad and angry and terrified. Any major life change IS difficult, and people who recieve a disability diagnosis will go through stages of grief and recovery and acceptance.

That is human.

What ISN’t reasonable or fair is to project your human fear of going blind tomorrow onto the reality of my existance. The resume on the table in front of you is just as present as I am sitting across from you; the two are not mutually exclusive. I’ve had years to learn and to grow, just as you have in your own way. Disability does not automatically stunt one’s emotional growth, though the prejudices and fears of others can stunt professional or academic growth for us.

Your fear of imminent disability is not the reality I live with every day. If I scare you that much, is that really about me?

And yet I take the fall for it. My disabled friends take the fall for it. We get passed over for job after job, for opportunity after opportunity, not because we don’t have the skills, but because of someone else’s own personal fear.

It’s time to put fear where it belongs, into perspective. Just as I doubt I will ever know what it’s like to be a Sumo wrestler, or the CEO of a Fortune 500 company, you may nevver know what it’s like to be blind. And that’s okay. You can wonder what YOUR life would be like if you went blind tomorrow, just as I can ponder what I would do if I lost my hearing. But what I cannot do – and what you must not do – is to take those fears and questions and uncertainties and place them on the shoulders of those who embody that reality. Our shoulders are not meant to bear your fear, but our hands are capable of providing help and guidance and productivity to your organization, your school or your company. Maybe in ways you never would expect.

In the Shadows of Gaslights

12 Saturday Aug 2017

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A package was being prepared for shipping. Payment arrangements had been made. By all accounts, an ordinary transaction. But my head pounded, my hands shook, and I just knew I was going to be sick. Before I knew it, I was trying not to vomit into a garbage can. I had to get out, and get out immediately. It wasn’t only the cold I’d been nursing for nearly a week that caused these symptoms; it was the residual affects of gaslighting that reard their ugly heads.

What IS Gaslighting?

Gaslighting can best be described as a manipulative and emotionally abusive tactic that erodes your ability to be confident in your decisions and perception of reality. In an accessible and readable article, LonerWof outlines how gaslighting can be spotted in family, marital or professional dynamics. My own experience, it sadly appears, is far from unique. Because of the personal nature of the stories below, names have been changed.

 

All in the Family

 

We learn many behaviors from our family of origin. When Kendra described to me her extended family dynamic, it sounded like a psychological thriller. One family member was accused of abusing women and children, denied it, and then, to hurt his partner, confessed to the behaviors he’d spent years denying. Children witnessed gaslighting behavior by a parent or grandparent, where some children were favored and others were “unspeakably abused” and made to believe they were imagining it. To protect his family from the toxic family dynamic – and with scars and a possibly undiagnosed mental illness of his own, Kendra’s father refused to permit family members to disclose to others where he and his immediate family (Kendra and her siblings) lived. Kendra believes that, because of what she saw growing up, she was able at a young age to get out of an emotionally abusive relationship before it “damaged her in the long-term.” After the breakup, before the age of social media, her boyfriend wrote her a letter that she describes as a textbook check list for manipulative gaslighting.”

But gaslighting is not always intentional. Sometimes, denial can lead to gaslighting behaviour. Rachel lives with a complicated visual impairment which went undiagnosed for years. Her family tends to dismiss her inability to see things, telling her to try harder, that – because an ophthalmologist didn’t diagnose her visual impairment – it doesn’t exist. Rachel finds herself in a complicated place, because relatives and in-laws don’t think she’s “that” blind, and yet she is the only one who sees through her eyes and processes her visual world, and she knows what she can and cannot see.

 

I love You… but You’re Wrong!

 

All relationships have conflict, miscommunication, and differing viewpoints. But when clearly-stated boundaries are ignored or deflected in ways to make one party feel unstable or irrational, that is gaslighting.

Sarah described to me a relationship she was in several years ago, where her concerns were glossed over or turned back on her. Boundaries she wanted to set were “evidence” of her mental instability, and she was a “psycho who needed to be hospitalized.” Any behaviors he did that hurt her, he denied doing them at all. When she wanted a short break from him to work things out, he tried to take her guns (used for target shooting) away “for her protection.” She began to doubt herself all the time, wondering if her feelings and concerns and personal boundaries were valid, or if her partner was right, that she was unstable and “psycho” as he claimed.

 

“You should Be Glad You have a Job Here!”

My recent experience above stemmed from a job I held years ago. I was belittled and bullied, and whenever I tried to raise legitimate concerns, I was told I needed to accept my colleagues as they were, and besides I had things I needed to work on. When I wasn’t being as productive as I knew I could be and was using substandard technology, my concerns were swept under the rug – until one of my colleagues couldn’t take my “unreadable paperwork” anymore – because replacing any equipment would’ve been giving me “special treatment.” Any time I mentioned anything about the work environment, I was told that I should be glad I had a job at all. The last straw was when the braille display unit I used for work needed repairs, and because it was purchased for me years ago (for work purposes) my employer didn’t believe it was their job to pay for the manufacturer to fix it. I ended up having to rely on a braille display from a wonderful generous friend while mine was out for repairs, but the bullying and gaslighting never stopped. I questioned my own perceptions – was I asking too much? Was I being a special snowflake? Was my colleagues’ and managers’ treatment of me in response to something I was doing, or not doing? Were they right, that I should be grateful I had a job at all in a down economy? Only one person at that workplace told me, in an unguarded moment, that they saw what I was going through, that they recognized it, that yes, it was, in fact, as bad as I thought.

Recently, that same braille display quit working. My work environment has changed drastically and is so supportive I can’t even begin to describe it. But so many circumstances were the same. I was borrowing that same display from that same wonderful generous friend, the box with my broken display was being prepped for shipping, and I was making phone calls to figure out how to get the repairs compensated. While support came from all sides – from the idea that I shouldn’t be the one to jump through hoops to simply be able to do my job, to modification of job duties if needed – I couldn’t escape the flashback. I felt like I was back in that office years ago, at the same desk, with the same people stabbing me in the back. Those who actually currently surrounded me were lifting me up and holding me together, and yet all I could hear and feel and see was my experience of years ago, being crushed underfoot, smothered by unreasonably unmet expectations.

In a room full of people, I was alone.

I was staring into the flames of the gaslights.

 

What if YOU See the Gaslights?

 

Gaslighting is real. It is not a figment of your imagination. Many who have shared their stories with me have told me that if they had known of its existance, they may have been able to put their fears and concerns into words, and may have removed themselves from the situation sooner.

Sarah has found that spending time with people who take her concerns seriously really helps heal the wounds that her gaslighting experience left on her. She thinks it’s essential to surround yourself with solid reliable people, and to remember that your alleged faulty memory or irrationality would be pointed out by more than just one person (or group of interconnected people), and never consistently in a way to manipulate a situation in someone else’s favor.

Rachel finds, for her, that it’s important to love her family, but to also recognize and embrace her own voice. She describes her family as “voices that I love,” but they do not live her life, and they are not always right, and she thinks that’s okay.

As for me, I don’t think it’s enough to keep my head down and just keep on plugging along. My plan is to seek out both social and professional connections to help make sense of all of this. When one questions their own reality, it’s hard to put it into concrete words. But I will try. I will hold my head high, surround myself with people who support me (singed gaslit eyebrows and all) and truly learn to trust myself again.

If you are reading this and have experienced gaslighting, please know that you are not alone. There is truth in what you are going through, and it is not inescapable. You are not alone. You are not wrong. How you experience the world matters, and no one has the right to take that away from you.

Relax! It’s Independence!

22 Friday Jul 2016

Posted by in blindness

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All the way through high school, I traveled with a white cane. I would move the cane in an arc on the floor no wider than shoulder width (as I was taught), sometimes even narrower than that. You’d think I’d brought and aimed a weapon or set someone’s hair on fire, the reaction was so intense. Students would jump over the cane, slam themselves and their buddies into lockers to get out of my way. My friends thought it was hilarious, but it was probably the first time I seriously felt that people were afraid of me for something that, to me, meant independence and freedom. Since then, I’ve been made aware of huge crowds of people parting the waters because a blind woman with a cane has started walking through a mall during the holidays or a concert venue at intermission. Sure, it makes my life easier, having a clean path, but it’s always made me feel somewhat “other” when it’s announced or otherwise apparent that a path is being cleared for me so that I don’t hit anyone.

Fast forward several years, and Jenny, a wonderful, communicative guide dog wiggled her way into my life. Her presence means that I can travel more fluidly than I ever could with the cane, can even run independently (something I never thought possible). Not everyone likes dogs – some are afraid of being bitten or licked or approached by a dog – and I understand that. If my dog gets invasive, obnoxious, causes a direct disturbance not related to her being a dog doing her job and people being fascinated by her, that’s one thing (all service dog handlers have had moments where their dog’s behaviour has made them want to melt into the floor). But in the span of a week this past spring, I experienced two instances where the mere presence of my dog has caused people to publicly overreact in ways they probably hadn’t intended.
I was sitting on a bus, minding my own business, when the doors opened and a man got on. He turned to walk to an empty seat, saw my dog, then went back to the bus driver and said that he would get on at the back of the bus so he didn’t have to “go past that dog”. I was so shocked I couldn’t say anything. If he hadn’t seen my dog, he’d never have known she was there on the bus. And before anyone raises the “allergies” argument… I’ve worked with people who have allergies, have friends who have allergies, have had strangers discretely tell me they have allergies so that I know to make 110% sure that my dog’s nose is where it belongs, that she’s out of their way, that the risk of contact is as minimal as possible. I have never felt by any of those people as disrespected as I did that day on the bus…
Later that week, I went shopping with a couple of friends and had a lovely time trying on clothes, finding some bargains, and laughing uproariously at a couple of items that fit just slightly wrong enough to be hilarious. After paying for my purchases, Jenny and I were making our way to the exit when two young women more than twenty feet away started screaming that there was a DOG in the store! I chose to redirect Jenny to go a route that didn’t intersect their path, and she handled it with professionalism and grace, but I was so shaken up that two people felt the need to publicly vocalize their fear when my dog and I were doing absolutely nothing to them. At the time, I thought that no one would react similarly to the presence of a wheelchair, but I recently discovered this article that makes me think that such instances happen more frequently than I ever considered.

Last week, I went into a store to return an item. Jenny and I walked up to the counter behind another customer, who very abruptly asked the clerk to ask me to move my dog. I took several steps back out of her way, waited my turn, then walked up to the counter while the other customer walked the looooong way around to exit the store. The clerk told me that the instant she saw my dog, her face just tensed right up. For some reason, it really hurt. It was yet again one more instance proving that I am still considered “other” because I use a dog to travel independently (and if I used a cane I’d get griped at for hitting someone in the ankles).

Why are we so feared? And why is it acceptable? Why did I feel so helpless, like I couldn’t just turn around and ask some of those people if they had something to say directly to me? If someone expressed discomfort with or fear of someone’s race or gender or place of origin or religion, they’d be called out for what they are – homophobic or zenophobic or racist. But because the presence of a disabled body in public is so rare and unexpected, manners go out the window? And that’s acceptable?

So the next time you see someone using a cane for identification or mobility, a guide or service dog, a scooter or a wheelchair, unless they are directly interfering with your ability to go about your day, keep your mouth shut and your fear to yourself. If you want to know how we go about our days so bravely, imagine frequently encountering the fear of others, publicly, and think how you would feel if you had to go through that. We want to go about our days just like you. And you wouldn’t like it if we told our friends that we didn’t want to sit next to a non-white, Hindu man minding his own business on the bus, or freaked out because a woman wearing a head scarf happened to be shopping in the same store as us. You’d tell us to relax… it’s only a bus seat, only a head scarf. Guess what, when reacting to our presence? Relax! It’s a cane, a wheelchair, a dog. Relax: it’s independence.