In the Shadows of Gaslights

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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.

“Um… Dad? I got a Tattoo…”

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I recently celebrated a birthday. I chose to celebrate it by attending a stellar performance of “Phantom of the Opera” with my husband and a good friend, silencing my phone’s frequent ringtones heralding “HAPPY BIRTHDAY!” messages from all corners of the technological world, and capping it off with a personal-best-speed 6-mile run. In the midst of all this, I received several birthday wishes and instruction from my father, that I could get ANYTHING I wanted…. except a tattoo.
That’s great!
because… I already have one tattoo… and I don’t want any more.
When I told my father this, he seemed surprised. “How did that happen?” he texted me.
Well, in the manner of all things sarcastic, I texted back that I consulted a tattoo artist, had a design drawn, sat in the chair, and got it done.
Isn’t that how all tattoos “happen”?
I never intended to keep my tattoo a secret. In fact, my dad reads my blog; I mentioned it here. But for people who’ve just met me or don’t read my blog or missed the whole half-a-sentence mention my tattoo got six months ago… here’s some details!
I chose to get it where it can be concealed in the workplace and shown off in a more casual summer atmosphere. Originally I wanted mine on my shoulder blade, but many friends told me in general tattoo-based conversations about their shoulder pain horror stories, so I nixed that idea. At the time I was working in business-to-business sales, and many colleagues had tattoos. I asked a couple of them where they got theirs done, called a couple of shops, and went in for one consultation.
I know many people who have TONS of tattoos; others are terrified of needles. I fall much closer to the “terrified of needles” camp, so I was kind of scared to get this done. Several friends (blind friends in particular) asked me about my experience getting a first tattoo, if it hurt, what my artist was like, how I knew things would be OK… the whole bit. I had to think a lot about it, because I lucked out; my one consultation was so easy and fluid that I never even considered getting another.
When choosing a tattoo artist, you’re effectively finding a doctor, a therapist and a graphic designer all in one. It’s an intensely intimate process and both artist and “canvas” need to be able to effectively communicate, otherwise…. not-cool things could happen… and they’re pretty permanent!
When I walked in for my consultation on an unseasonably warm Friday in January, I had no idea what I would be getting myself in for. The entire staff was warm and welcoming, and Jessie (the artist who would design and place my tattoo) and I sat and chatted about what I wanted, where, and how she could best describe her design for me as a blind customer. I’m pretty no-muss-no-fuss, and I wanted something I would be happy with but that wouldn’t be too elaborate (see above comments about needles). It was one of the easiest service-provider/customer conversations I’ve ever had in my life, and I knew I’d found the right tattoo artist. Money was pretty tight at that time, and so I told Jessie I would give her a call once things picked up and I could justify the expense, but I definitely wanted the tattoo. Not three weeks later I got my current job offer, paid my deposit, and asked for Ben’s thoughts on some drawings. He wanted his own tattoo, but different from mine, and on the first concept drawings Jessie hit the ball out of the park for both of us.
The designs had been chosen, I left Jenny at home, and I made my way back to the tattoo shop. I don’t know what I expected (some cubicle-style room with a curtain across it? Dingy dark corners where tattoos are applied in secret?) but the open airy room I entered with huge windows along the back wall definitely wasn’t it. While I was nervous about getting the tattoo, Jessie was great about putting me at ease. I even got to put on gloves and feel the tattoo gun (without needles) as it vibrated, and touch the needles in their sterile packaging. As I sat in the chair, Jessie went to work, describing everything she was doing, giving me fair warning if she was using a different needle (yes, they feel different), offering me a break if I needed. We talked about other things, too, like good food and dogs and work and business ownership… life, really. The time flew by, and while the tattoo application hurt a little, it really wasn’t that bad. Just over an hour after we got started, a bandage was placed over my freshly-tattooed skin, and it was done.
I remember telling Jessie at the time that I seriously don’t think anyone has ever just “gotten” communicating with a blind person so well. She admitted to feeling slightly uncertain about how much information to give, but she knew that everything she did would have to be described. One never would have guessed that I was her first blind client, though not her first with a disability (she mentioned having done piercings and tattoos for Deaf clients). Not only did I get a cool-looking tattoo, I got the seamless experience – the true luxury – of not having to explain anything at all about blindness or accommodations or humanity and disability. Remember when I wrote about a tattoo artist being like a doctor, a therapist and a graphic designer rolled into one? I hit the jackpot.
So, if you’re in Edmonton, hit up Jessie at Shambhala Tattoo. Tell her Jenny sent you… because, in a way, she did.

 

My tattoo of Jenny’s paw print with her name inside it

 

 

Raising my Voice: My Thoughts on the Proposed Canadian Service Dog Standards

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We’ve all seen the news stories about people bringing their pets into public spaces and pretending they are service dogs. We’ve all been angry at the dishonesty, the danger to ourselves and our legitimate service dog teams, and have various ideas on how to combat this. Some propose service dog registry and identification; others place the burden on businesses to exercise the rights they do have (notably to ask the handler of an aggressive or disruptive dog, service dog or not, to remove it from the premises), rather than the people with disabilities who depend on service dogs to live fulfilling independent lives. Still others want governments to take action.

In Canada, an organization in the Public Works and Government Services (not a government committee) – made up of representatives from service dog training organizations, veterinarians, advocacy groups, regulatory bodies, and individuals – has been hard at work for two years to create a national standard for service dogs. Their stated objective is to provide a universal standard for service dog teams. Over the past month, many friends and advocacy groups have sent the draft standards to me, advising me that there is a public consultation phase that ends on July 14. As I know several groups and members who have helped draft this proposed standard, I chose to take my chances and hope for the best. But as emails and facebook posts flooded my phone and computer this past weekend, I realized that I couldn’t bury my head in the sand anymore. I had to figure out just why my phone was going crazy.

I read the standard, beginning to end, and will be submitting my comments to the board.

What The Committee Is Not

This is not a bunch of egotistical, evil people out to make life harder on service dog teams and handlers. While training programs had voting power, other advocates, professionals and owner trainers had votes in the meetings as well. This is a large group of people, all of whom have valid concerns and objectives: to make sure service dogs, handlers, and the general public are safe. If you choose to comment on this post, please be forewarned that I will delete any personal attacks against the committee or disrespectful talk about how you will never visit my country. If you can’t offer anything constructive (be it praise or criticism), keep it to yourself.

What this Document Is Not

This document is not current legislation. Even if it passed as is tomorrow, it is not law. While it may be used to create universal legislation across the country (so that someone in BC won’t undergo stricter scrutiny when they travel to Saskatchewan), legitimate service dog handlers can wake up on July 15 (after the open consultation period) and go about their lives, hopefully with no public interference.

This document is not a declarative statement on where a Canadian can train for a service dog. I’ve seen a ton of fear-mongering on this topic, that the board is saying Canadians can’t train in the States, and no where is this stated or implied. Guide and service dog programs may be concerned about their ability to serve Canadians due to the standards, but the standards themselves, as written, do not restrict location of training. There are enough legitimate concerns in this document without creating more.

This document is not permanent. That’s why it’s called a “draft”. For future readers of this blog, anything written below is paraphrased from the draft standards published on May 2, 2017. It’s a living document; it will change. We as Canadians can make our voices heard by providing feedback through the Web site. We have an opportunity to push for change, to offer suggestions, in a way that is seldom available. Take it!

What They Got Right

This document is thorough. Whether you agree with it or not, it’s a long comprehensive document. People with a wide variety of disabilities are represented, along with a non-exhaustive list of tasks their corresponding service dogs can perform. It touches on everything from training and behavior to realistic expectation, equipment fit, first-aid… I could go on and on. No one can accuse the standards board of not considering any situations. The needs of both service dog and handler are referenced throughout, with great emphasis being placed on the biological and emotional needs of the dog. The rights of persons with disabilities to access public spaces safely with their service dog are well-documented.

Unreasonable Intrusions

But while it’s clear these standards indicate that handlers should have realistic expectations about their service dogs performing learned tasks or learning new ones, their expectations of obedience are higher and, frankly, not as realistic. According to the draft standards, a service dog must respond immediately to obedience commands, on or off-leash,  in all conditions and circumstances. While later in the draft, there is mention of intelligent disobedience (when a dog disobeys a direct command when it is unsafe), the words “under all” do appear related to obedience (Section 4.2.2).

But what is not specified anywhere in this document is who can assess – and how frequently – whether the handler has “enough” knowledge on any of these things, or when the dog is obedient “enough”, even off-leash, in the home? It does appear that an assessor will at some point enter the home of a person with a disability, just because they wish to use a service dog, and I do wonder about an intrusion of privacy that no pet dog owner has to undergo.

There is also particular concern about the equipment used by a service dog team. Based on the current draft, any slip collars, E-Collars, prong collars, or muzzles would not be considered appropriate equipment (section 5.2.1.1). While I personally have strong opinions on my dog with equipment, it is not my place to judge another handler’s appropriate use of tools; even a flat-buckle collar can be used in an abusive manner. I have used a head halter (frequently mistaken for a muzzle, even though my dog can fully open her mouth while wearing it) to re-shape behavior; this standard does not address that at all. If we are responsible enough to handle service dogs in public, we should be treated as responsible enough to use appropriate tools humanely to mitigate behavior or receive tactile feedback.

A brief note about identification: several people think identification is a good way to weed out the fakes. Section 7 addresses the information that would be made available on identification (on a service dog’s harness/leash, or ID card carried by the handler). It does not appear to provide provision for those who wish or need to make their own equipment or buy from manufacturers whose equipment fits their unique needs as a service dog team, but does not readily identify “service dog”. These draft standards do not – nor can they – address who can ask for service dog team identification, under what circumstances.

One of the many other concerns I have is statements regarding separating dog and handler. Section 5.2.3.3 states that the service dog will “tolerate” removal from the handler (by whom?) when required by circumstance. The draft indicates this will be inspected (section 8.2.2.3) by having a person unknown to the dog promptly remove the dog from the handler and walk away a minimum of 6 meters. While I understand this is to test for aggression, as a visually impaired person who has had her dog forceably removed from her, this is traumatic, and does not show compassion and understanding (as stated in the goals of the inspection). As an aside, my dog might be tolerant of being separated from me, but I wouldn’t be! It would be like someone driving a car and the passenger just ripping off their glasses.

Other Concerns/Questions

A few questions I pondered while reading the standards. At what stage of the service dog’s working life these inspections are administered. What do owner trainers do? Where are the inspections held? How frequently? Who pays for travel? Does the handler have the right to access public spaces before the inspection? Does a Canadian who receives their dog from an American source have to undergo additional testing? So many more questions about the logistics that the standards themselves cannot address. They are only the first step in a complicated process which will need regulatory and legislative bodies to implement and enforce. Many (myself included) have grave concerns about the implementation of the standards. These concerns are not without merit. But at the end of the day, these standards can provide a foundational framework in which all service dogs, handlers and the general public can feel safe alongside each other.

So where do We Go from Here?

I will not throw the baby out with the bathwater. I have had friends whose service dogs have had to retire because of attacks by overly stressed legitimate service dogs or encounters with out-of-control pets in vests. Standards, by themselves, are not a bad thing, and I do see some value in these proposed standards of behavior by both handler and service dog. However, I think there needs to be much more clarity about the inspection process and the access rights of a person with a disability using a service dog. If someone owner-trains their service dog and/or uses third-party equipment without “service dog” markings, are they still protected by each province’s Human Rights legislation? If so, then there needs to be more education of service providers about when a disruptive or aggressive service dog team can be asked to leave, and more teeth to penalties for impersonating a person with a disability to take a pet dog into public.

While I believe there is the best of intentions for this standard, I question its enforceability and the potential intrusion it places on the lives of people who already receive strict scrutiny. While the commentary period is open until July 14, raise your voice in constructive ways. Don’t only point out what’s wrong, but how it could be better. And above all, don’t forget to indicate what was done right.

Book Review: Love and First Sight

I picked up this book during a period when I needed something light to read. Something very very light.

And I’m not really sure that’s what I got.

 

Love and First Sight

By: Josh Sundquist

In his debut novel, YouTube personality and author of We Should Hang Out Sometime Josh Sundquist explores the nature of love, trust, and romantic attraction.

On his first day at a new school, blind 16-year-old Will Porter accidentally groped a girl on the stairs, sat on another student in the cafeteria, and
somehow drove a classmate to tears. High school can only go up from here, right?

As Will starts to find his footing, he develops a crush on a charming, quiet girl named Cecily. Then an unprecedented opportunity arises: an experimental
surgery that could give Will eyesight for the first time in his life. But learning to see is more difficult than Will ever imagined, and he soon discovers
that the sighted world has been keeping secrets. It turns out Cecily doesn’t meet traditional definitions of beauty – in fact everything he’d heard about
her appearance was a lie engineered by their so-called friends to get the two of them together. Does it matter what Cecily looks like? No, not really.
But then why does Will feel so betrayed?

Told with humor and breathtaking poignancy, Love and First Sight is a story about how we relate to each other and the world around us.

 

What I Loved

As I read this book in audio format, I loved the narrator. he became Will. With the exception of a really horrible Italian accent for one of the characters, the narrator’s characterization was superb. As for the book itself, I’m thankful that Will is not a loner – he hangs out with the super-smart kids – and he’s a practical joker (as evidenced by Will’s response when he is asked to touch someone’s face). The author did an amazing job of recreating a situation where someone is treated differently because they are blind, but he doesn’t leave it there, showing Will (and us) that some people do “get it.” Will also seems to possess a certain amount of awareness about himself and the world around him, and yet he wants to be able to conceptualize visual information when he meets Cecily, whose photography hobby is a foreign world to him.  This book does ask important questions about vision, autonomy, independence, helicopter parents, even though I found myself vastly disagreeing with its conclusions.

 

But Mooooooooom!

I could devote an entire blog post to the real-life counterparts to Will’s mother. She is the embodiment of a helicopter parent. Mom packs Will’s lunch every day, braille labeling the containers, wanting to hover at every opportunity. She insists that he wear big dark sunglasses to school (unlike some more stylish options he can wear), and Will just seems to go along with it after he freaks out Cecily by unintentionally staring at her.

This meddling is not new. As a young boy, when another child takes advantage of Will’s inability to see, instead of teaching Will how to handle that situation, his parents ship him off to a school for the blind. Ten years later, Will is trying to find his way, and his mother is smothering him… until, suddenly, she isn’t? And Will realizes that her hovering is preparing him for independence? And we’re all somewhat dependent on each other? Um… what?

The Disability Cure Trope

When Will begins to regain his vision, his confusion and exhaustion are obvious. The author does a great job of describing in general how exhausting it is for a brain to completely re-wire itself to process things differently. However, unlike Mike May in “Crashing Through”, Will’s parents do the initial leg work with him and his identifying of objects. I had a hard time with the disability-cure-leads-to-happiness idea, particularly since Will was never certain he wanted the operation to begin with, and the idea that Mom and Dad are teaching him to “see” just rang hollow and like the author didn’t feel like doing some research.

Speaking of Research

There were some truly cringe-worthy research blunders in this book. For example, Voiceover reads textx, not Siri. While in some ways the author adequately described the dynamics at a school for the blind, and the frustrations of electric cars, he also completely misnamed someone who teaches the blind to navigate as an “Orienteering and mobility guide.” One of Will’s friends wants to help him and Cecily deliver the morning announcements at school, does a bit of research, and asks Will if he’s heard of a refreshable braille display (Will has, but doesn’t have one). Buddy is able to procure one (something that costs thousands of dollars) in a matter of just a couple of days, and he (not Will) is the one to set it up. A little research would have gone a long way to making this book so much better… but as a fun aside… Do Scratch ‘n Sniff stickers come in gasoline and smelly socks?

 

Conclusion

The above paragraphs sound like I hated the book. In fact, I didn’t hate it at all. I had a really hard time with some ideas within, and I’m always very frustrated if an author decides not to do their homework. But it’s a fun way to spend some time, and it’s written in an engaging style that made me smile. I grew to love Will and Cecily and their friends. Even Will’s Dad grew on me. Take a ride with Will, Cecily and their friends; it’s a mildly wild one.

3/5 stars.

Have you read this book or any of the others I’ve reviewed? Leave a comment in their comment sections, and let’s chat about it!

Summertime… when I Feel More… Respected?

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This time last year I remember (and facebook reminded me) getting up for a 9:00 AM job interview. I opened my eyes and got hit with a sudden burst of intense stabbing pain… right in both eyes. I had two options: reschedule the interview (as I had already done the day before because I was feeling absolutely awful) or attend the interview with a light-sensitive migraine. If I chose the second option, I had two options stemming from that: suffer through it, or do the somehow stereotypical “blind” thing and walk in with sunglasses.
It was far from an easy decision. To me, sunglasses were for sunny days, not moderately cloudy ones, and absolutely never ever ever indoors. I looked so… blind in them (I still don’t know what I meant by that thought). When I asked several people I knew – sighted and blind – through the instant question-answer format of social media, I received so many answers, and many conflicted with each other. All paraphrasing is mine, but the general ideas went something like this.
“Absolutely not! Your interviewer NEEDS to at least have the semblance of eye contact.”
“Why not? Your eyes hurt; you need to be functional.”
“It’s SUCH a blind thing to do.”
“If they’re fashionable, wear them!”
I chose to wear the sunglasses. They had been purchased years before and were both fashionable and moderately functional for my purposes. The frames were basic black with round lenses, and they didn’t scream “blind person!” to anyone who looked at them. The instant I put them on, just before leaving my house, I felt my entire face relax, and the stabbing pain in both eyes magically disappeared.
The interview bombed. It bombed worse than almost any other interview I went on the year I was unemployed. It had nothing to do with my glasses, my headache, or anything else. The job and I were simply not a good fit.
But when I left the interview and went about my day, my sunglasses still in place, I noticed something else I hadn’t considered before.
People treated me better.
You see, if you were to look at my eyes directly, you would know that I am blind. My left eye is, for all purposes, unusable. My right eye won’t stay still. Walking down busy downtown streets that morning – even with a guide dog – while wearing those sunglasses, people seemed more inclined to make general non-blindness-related conversation with me, or accepted my assertions that I didn’t require their assistance. This old pair of sunglasses seemed, in a way, to be magical to me, to open a doorway to some previously rarely-found milieu of autonomy and dignity.
During the course of a few weeks, the more I wore my sunglasses, the less blind I appeared to others. The less blind I appeared, the more people left me alone (or at the very least respected my polite declining of their assistance, something they offered less frequently). I loved how it felt.
But those glasses I wore to that interview no longer flattered my face the way they had years ago when I had first purchased them. I needed, as a friend stated, a more fashionable pair.
So what does a girl do when she needs a stylish pair of sunglasses that she doesn’t need to see clearly through? She goes to Walmart, and finds the coolest, most professional-looking pair of sunglasses they have that also covers her eyes and flatters her face. I spent a grand total of $15 on my sunglasses, and the complements from friends, family, and strangers make me feel like I should’ve spent more. And when I wear them, people generally treat me better, like I’m any other office worker or customer or pedestrian.
I wonder why that is.

And I wondered why I had resisted them for so long.

When discussing this topic, I had no idea the types of division I would stir up. Some people were very comfortable with their choice to wear glasses, others firmly confident in their decision not to, and many fell somewhere in the middle. Comments ranged from “No blind person should wear glasses, ever, because it makes them look pathetic,” to “I wear them on sunny days because the glare bothers me, but I’m still uncomfortable doing so… it’s such a blind thing to do,” to “I wear glasses because my eyes hurt otherwise,” to “I wear them because I know my eyes are damaged due to accident or illness, so I wear them for the general comfort of those around me.” Others hadn’t considered them one way or the other, either because they were never encouraged to wear them, or because it was really never an issue; while my sunglasses made me look “less blind”, some believed that their wearing them would call attention to their blindness in a way that their uncovered eyes never do. Still others believe that wearing sunglasses means that they are hiding a part of themselves – their blind eyes – even if they are imperfect.

But one friend, whose blindness is due to Retinoblastoma, described in vivid detail being forced by parents or teachers to wear them. She would get in trouble in school if she took them off, and even now – as a grown woman – if she’s in her family’s company, the comment is made that she needs to wear them. Like it or not, she is judged on her appearance. Retinoblastoma can sometimes lead to facial scarring that may be off-putting to some, so some may argue that if it can be covered by makeup or glasses, then why not use them? And yet, my friend has a very complicated relationship to glasses today, for the simple reason that they were pushed at her so much as a child and teenager and even now as an adult.

A simple accessory to some, to others a way to make it through the day. To some they bring freedom, to others a sense of complicated shame. I had no idea that the job interview a year ago would start me on this journey of asking questions about an accessory that most people wear without a second thought. It’s opened up far more questions for me than it’s answered, and yet, I’ve made my own piece with my sunglasses. My cute sunglasses make others more comfortable with me, which makes me more comfortable with myself. I hate that this is so. And I hate that others would receive the exact opposite reaction because their uncovered eyes don’t make them look blind.

So for now, while the days are long and the sun is so bright that almost everyone has to squint to navigate the world visually, I’ll take that automatic respect that these lenses and frames seem to have granted me. Now the question is… can this continue in the winter?

Crying Wolf!: Or, What it’s like to have a Blind-friendly Cat

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Two months ago, after days of hand-feeding and hoping and remembering and crying and realizing it was the end, we said goodbye to our beautiful Russian Blue kitten, Dash. Her ashes – along with her collar and a few tufts of fur – currently sit in a box on a windowsill where she can enjoy the sunbeams until she’s laid to rest permanently. Two ceramic pawprints with her name in raised letters sit on my computer table, where she would climb up for snuggles, as a testament that says “Dash was here.”

But Dash WAS here, and a hole opened up in our little kitty kingdom. The Boy cat and Jenny consoled each other somewhat, but they each grieved in their own ways. Annie started pacing back and forth in front of me while I was on the phone, demanding my attention, something only Dasher ever did. I could hear the echo of Dash’s meow at unexpected moments and it stabbed me in the heart, while Ben sought comfort in the other critters. We knew, very quickly, that we needed to give another Russian Blue a good home.

And we quickly found one.

Wolfie the Photogenic Kitten

We saw Wolf’s picture on the SCARS Web site only a few weeks after Dasher’s death, and we knew she was the kitty we could help, and she was the kitty who could help fill that empty space. The look on her face, and the fact that she needed to be around other kitties told us that we would all be a perfect fit. From the instant we met her, she allowed us to play with her, to pick her up, to show us her sassy side. At only six months old, she showed us that she wasn’t afraid to holdd her own against more dominant cats, and she clearly needed other kitties so she wouldn’t feel like she was all by herself.

From the moment we brought her home, she possessed such confidence and security. She did not spend one minute hiding, but instead made herself comfortable on the arms of our couches, watching everything around her, as if to ccalmly tell the other kitties, “I’m here, I’m exploring, I’m figuring out my own place in this pecking order… you, deal with it.” Within only a few weeks, she went from a clumsy uncoordinated six-month-old kitten to a growing, purring, playful bundle of energy. She and the Boy wrestled and played not long after Wolfie came home, and the difference in the Boy, too, was startling.

It’s fun, learning how to communicate with a new, young cat. We’d taken for granted the quirks of Annie, Dash and Wayne, knowing on instinct their favorite toys or when they preferred snuggles or how they liked to tell us to please for the love of God change the litter boxes. Wolfie through all of that into disarray. We learned very quickly that the way to her heart is toy mice, that she and the Boy will stand side by side when food is poured into the bowls, that her favorite sound is the sound her claws make while she tries to climb up the window screens. She has different meows that we’re still trying to decipher, but most of them seem to indicate a brief, “Hi! I’m here!” She doesn’t seem to like the bell on her collar or her license tag, as evidenced by the fact that she can crane her neck down and bite at the tag at any opportunity. Wolfie has no interest in going outside, but she loves to spend hours in the breeze by the back door.

But why would I say she is a blind-friendly cat?

With me, she is not silent. Ever. She actually comes to her name about 80% of the time. The rest of the time, when I call her, she will announce her presence with a quick meow or a jingle of her collar. If I put my hand down after calling her, she will put her nose up against my fingers, then let me pick her up for a snuggle. Even if I’m near her, petting another kitty, her loud kittenish purr gives her location away instantly. She communicates in her own way with Ben, of course, but I’ve learned she only seems to do these things with me, as though she understands that if she wants to get my attention, tactile and verbal cues are the way to do it.

Wolfie will never replace Dash, not really. But some of her quirks make it feel like Dasher is still here with us. Sometimes, we have to stop ourselves from calling Wolf “Dash”. That gets easier with time, and as Wolf grows into a more confident, stronger kitty. She’s slid herself into our kitty kingdom almost seamlessly; and even though she and Dasher never met, I think they would’ve been friends.

Welcome home, Wolfie. We’re happy to have given you a fur-ever home. Thank you for loving us, for making us laugh, for keeping us on our toes. And Dasher… if you sent us this kitty, thank you, too, sweet girl. Enjoy your sunbeams.

Book Review: Eyes Wide Open

Over the past few months, I seem to have found myself reading books on self-improvement (working on sales skills, overcoming rejection). And biographies and autobiographies of people with disabilities (because we are all on a similar journey with many paths). A few months ago, I read a terrific article about taking a step back and trying not to read someone else’s intentions and the importance of communicating effectively. When I discovered the author of the article wrote a book, I snapped it up quickly, hoping to be able to learn a few things. I did, but not in the way I expected.

 

Eyes Wide Open

By: Isaac Lidsky

In this New York Times bestseller, Isaac Lidsky draws on his experience of achieving immense success, joy, and fulfillment while losing his sight to a blinding disease to show us that it isn’t external circumstances, but how we perceive and respond to them, that governs our reality.
Fear has a tendency to give us tunnel vision–we fill the unknown with our worst imaginings and cling to what’s familiar. But when confronted with new challenges, we need to think more broadly and adapt. When Isaac Lidsky learned that he was beginning to go blind at age thirteen, eventually losing his sight entirely by the time he was twenty-five, he initially thought that blindness would mean an end to his early success and his hopes for the future. Paradoxically, losing his sight gave him the vision to take responsibility for his reality and thrive. Lidsky graduated from Harvard College at age nineteen, served as a Supreme Court law clerk, fathered four children, and turned a failing construction subcontractor into a highly profitable business.
Whether we’re blind or not, our vision is limited by our past experiences, biases, and emotions. Lidsky shows us how we can overcome paralyzing fears, avoid falling prey to our own assumptions and faulty leaps of logic, silence our inner critic, harness our strength, and live with open hearts and minds. In sharing his hard-won insights, Lidsky shows us how we too can confront life’s trials with initiative, humor, and grace.

 

Autobiography

You learn early on that Isaac Lidsky has lived an exceptional life for someone who hasn’t yet turned 40. he’s starred in a hit TV show, clerked for not one, but two, Supreme Court Justices, owns his own company, and is a father of four.
The autobiographical portion of this book is told in “fishing Trips”, lighthearted reads, non-sequential essays. You know his wife gives birth to triplets and health problems arise, but you learn this in the early stages of the book, and don’t learn the outcome until closer to the end. His taking over a struggling construction company is detailed first, then, the next “Fishing Trip” essay is about a threat to his employer (a Supreme Court Justice) three years earlier that included his taking a motorcade to a cigar bar. The autobiography is compulsively readable, but it’s hard to follow, because it’s not written in any linear fashion.

 

Journey Through Sight Loss

 

From teen heartthrob to law clerk to entrepreneur, Isaac Lidsky has worked hard to get where he’s at, but he had to first come to terms with his declining vision. He believes that he would not be the person he is today without having lost his vision. When addressing his own journey to sight loss acceptance, he uses terms such as “awfulizing” (considering and brooding on a worst-case scenario). He acknowledges that many people view losing their sight as terrifying – he was once one of them – but likens it to a child who fears a monster under the bed and has to be told again and again that there are no monsters. His way of expressing his own journey through sight loss – from denial to resignation to acceptance – is refreshing; he acknowledges that he has to remind himself that others are where he once was, and needs to take that step back and allow them to fear the “monster” of sight loss and learn the truth about the “monsters.”

 

Self-Help: Eyes Wide Open

 

The self-help aspects of the book were where most of my conflict lies. There’s not a lot new here, though some of the analogies put into great words things I’ve never been able to express. Everyone has had an experience where they knew they saw a neighbor, an acquaintance, or a coworker somewhere… only to call their name and discover it’s not them. Heck, even someone who knows me had a similar experience. Lidsky uses this universal experience to drive home the point that perception is not reality, and we would do well to remember that.

But what is most troubling is his assertion that life is what you make it, that people will misjudge you but it’s up to you to not allow their perceptions of you to colour your perception of yourself, or of them. This glosses over the very real problems of ableism, racism, sexism that exist in our world. And being grateful that we can read and write, and live on more than $10 a day, doesn’t address very real obstacles that are placed in our path. Lidsky compares life to a game of poker – of skill rather than luck. Yes, what you do and how you respond to challenges matters – and it matters a lot – but constantly receiveing horrible cards puts you in a situation where you’re supposed to bluff your way through life, or you’re so far in the hole that no amount of skill can get you ahead in the next 27 hands.

 

Conclusion

 

Isaac Lidsky has lived a remarkable life. He has worked hard to get where he is, and I would never presume to take that away from him. But in many ways he has been given remarkable gifts of a superior intillect, a supportive family, and a drive to succeed in his chosen career and academic fields. For those who simply want a “normal” life, his advice can lead one to feel that their ordinary dreams are not good enough. The “pull yourself up by your bootstraps” ideas can make those who’ve faced very real ableism, sexism or racism feel marginalized all over again because we “let” someone else get to us and relied on luck rather than skill to dictate the course of our education or career or life.

I’m struggling to rate this book fairly, because I think it tried to be too many things to too many people. As an essayist, I like the way Isaac Lidsky expresses himself. But as a hole, I struggled to read this book straight through. Even picking apart the well-written personal essays – by turns humorous and heartbreaking – I would’ve preferred a more sequential reading. And the self-help “eyes wide open” philosophy – even though it contained some portions that will make me think – doesn’t address some very real problems that do have very real consequences. Yes, we need to step back and ask questions and listen actively, but Lidsky’s glossing over one’s perception of him as a blind man (because, frankly, he has the economic luxury to do so) and encouraging others to do the same, rings quite hollow.

Even so, this book will make you think; it will challenge you. It challenged me in some important ways.

3/5 stars.

Sugar and Spice and Everything Nice? Not on MY Life!

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About three months ago, I started a brand new job. I love my job, the people I work with, the location… all of it. Working in a big building downtown wasn’t something I ever thought I’d do again, but I’m thrilled to be where I am. Jenny and I have been welcomed with open arms by colleagues, managers, building regulars, fellow transit passengers… just about everyone.

But working in a big crowded building also brings to the forefront something every disabled person has dealt with at one time or another: the grabbers. Sure, I’ve dealt with them before in other jobs or other places, but working in a very large building open to the public 5 days a week puts me in touch with many amazing people… and many grabbers.

And you know what?

I’m done being nice to grabbers.

Over the span of the past month, I’ve had numerous encounters with someone (several someones) who thinks that grabbing my body to direct me is acceptable. My shoulders have been turned to direct me, someone steered me by the waist, my hands and arms have been grabbed so frequently (and at one point so hard) that I swear I can still feel marks on my body from the other person’s fingers. Depending on the situation, the closeness of quarters, and the willingness of the other party to observe both visual and verbal queues, my reaction is situationally specific, made in a split second, when I’m not stunned motionless and speechless by someone’s lack of personal boundaries.

But why should I have to think about it? Why should I need to make judgment calls on an appropriate reaction on a frequent basis simply because I have a disability and people get weirded out about it? Why should I have to be nice because someone “meant well”? Meaning well means asking first. Meaning well means listening to my response. Meaning well means not doing something that would reasonably get one punched, kicked, screamed at or sprayed in the face if the action was directed at anyone without a disability.

And think I’m exaggerating?

A blind friend on a facebook discussion on this very topic “only gets rudely grabbed twice a week or so.”

Only?

ONLY?

There is no ONLY!

This behavior is unacceptable. We can all agree that able-bodied people aren’t frequently grabbed, manhandled, pushed, prodded, or otherwise bodily manipulated. We can all agree that such behavior is wrong. So why does disability make it right? The fact that it happens so frequently to people with visible physical disabilities that we think it “only” happens twice a week or so should appall you. The only time to grab someone is if they are actually falling and you need to catch them, or you need to pull them back from real danger (like an oncoming bus a split second away). That does not happen twice a week or so.

My tongue bleeds sometimes from my biting all of this back, from keeping quiet, from being nice. If I had fingernails, the palm of my right hand would have half-moon shaped scars from clenching my fist in my pocket. But I’m done bleeding and scarring because of my own desire to blend in, to simply go about my day. Grabbers, you are the problem, and I’m done taking out my frustration on myself. I’m done being nice because being nice has gotten me – and society – nowhere. So your intentions don’t matter; keep your hands to yourself. I’m taking my equality into my own hands. A woman without a disability can fend off an attack? Your firm grip on my hand, wrist, arm, shoulder, hips, waist, or mobility aid without my knowledge or consent is an attack, and I will respond accordingly. If grabbing me is your way to ensure my safety, I plan on learning and training and finding out how I can keep myself safe… from you. You don’t ask me if I want your help; you think you can and should decide for me. That decision is not yours to make.

The Good Old Hockey Game

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Ahhhh, hockey, how I love thee.

Ahhhh, playoff hockey… how much MORE I love thee.

Edmonton has been gripped by hockey fever since the Edmonton Oilers made the playoffs for the first time in eleven years. Back then, I had lived in Edmonton for 18 months, had left my first job, was starting to seriously consider Bible school, and was way too broke to be attending any games.

Now, I’ve started a new job, been married for nine years, and am still too broke to attend a live playoff game…

But I could go to Rogers Place – the new hockey arena – and join what felt like the rest of the city in watching the away-game on the big screen.

 

First Period: Preparation

Our friends invited us to the Watch party at Rogers place. You get in for $5 and can watch the game on the big screen. If the Oilers had been playing at home, by all accounts we’d be spending hundreds of dollars on nosebleed tickets. But for this away-game we could soak in the atmosphere and watch the game for the cost of a pricy coffee.

Let’s go Oilers!

We all had our jerseys on – me, Ben, even Jenny! Jenn sported her running harness both for asthetic (Oilers colours!) and practical (comfortable) reasons, her Newtrix, and her MuttMuffs – we knew it would be loud!

We met our friends (who had our tickets) at Ford Hall, where the party was already started. The music was booming, and the Montreal-New York game was playing on the screen. We located our seats and asked if they had anything announcing the play-by-play of the game, and Guest Services provided us with an FM transmitter that would’ve relayed some information from the home-game announcers to a user’s headset, but not the exact play-by-play. I figured I could use my phone to stream the play-by-play, but the delay was so far back that I would miss the atmosphere and the action itself. Thankfully, as the game was streamed from a TV into the arena, I could hear more of what went on than I would’ve if it had been a home game.

We got to our seats, posed for pictures, and even got photo bombed by the cousin of a friend of Ben’s. The national anthems were sung – the whole house singing Oh Canada, remaining on their feet and singing The Star Spangled Banner.

Then… puck drop!

 

Second Period: Shots on Goal

The Oilers scored two fairly quick goals in the beginning of the second period. I felt bad that I had sent Ben to the concession for a drink for me, but he came back with food just as the second goal was scored and the crowd was screaming. As the game progressed, we started to believe that we COULD win this game – and this series – and move on to the next one. We cheered for our goals, for blocked shots, for penalty kills, for close calls. We cheered for each other, for our players, for our town.

 

Third Period: Gettin’ ‘er done, Bringing it Home

The Sharks scored a goal in the third period, and the tension ramped up. Nails were bitten, particularly when Edmonton got a penalty for too many men on the ice. The last five minutes, I couldn’t hear any of the play-by-play, so I screamed at Ben to tell me when something was going on. The cheers grew even louder, our eyes grew wide with incredulity as an Edmonton player went to shoot into an empty Sharks net and broke his stick. The last minute of the game, all you could hear was the shouting and cheering and screaming of thousands of Edmonton Oilers fans, on their feet, wanting to be heard all the way in San Jose. Edmonton’s team captain sealed the deal, and with an even louder roar, Edmonton Oilers fans raised the roof on Rogers Place.

 

I’ve been to hockey games before, particularly a memorable one in New York City, but nothing compares to this. As we left Rogers Place, buzzing with the thrill of the game, thousands of people flooded the hallways. Chants of “Let’s go Oilers!” and “We want the Cup!”, honking horns, and jubillant celebration could be heard at the arena, on the train, and on the road on the drive home.

I’ll never forget this game, and I can’t wait to see what round two will bring!

LET’S GO OILERS!!!

Rest in Peace… While I fall Apart

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I’m writing this post in the hope that I don’t have to post it. But if you are reading this, it’s a sad day in our home today. Last night, we said goodbye to our cat, Dash, after a sudden, fierce illness that we can’t completely explain. If you are reading this, Ben and I decided as a couple that the kindest thing was to let her go. I am writing this with tears running down my face, but I’m writing this now, days before the end, when I can still remember Dasher’s meow and her purr and the way she demanded attention until she decided seemingly arbitrarily that it wasn’t needed anymore. By the time this post is published – if it is published at all – it’s been nearly 24 hours since we held Dash in our arms, buried our faces into her soft fur coat, and said our farewells. It’s been nearly 24 hours since we cried at the kindness shown by the vet clinic, lighting a candle with a sign that said someone was mourning their beloved pet. While I still remember her for the gentle fighter and protective cat she is, not how she was during the last week of her life, I want everyone to know her for the quirky ball of CAT that was Dash.

Dash and Wayne settling in for the Winter

Dear Dash,

I don’t know if I ever told you these stories while you were curled up with me at night, while your purr rumbled me to sleep, while I laughed at your high-pitched, attention-seeking “Meeeeeeeeeeow!” But you’ve been part of this family almost as long as our little family existed, and my heart aches that you’re no longer making memories with us.

Ben and I talked about you, Dash… in the way of many conversations like this. The “We should get another cat… someday” conversation we had not long after we got married. We had Annie, of course, but another cat seemed like a good idea… in a someday-we-will sort of way. That summer day in 2008, we visited friends on a farm and were told one of their barn cats had just had kittens. I sat on their back porch and a little gray ball of fluff came up and demanded my attention. I lifted it up in my arms and it purred contentedly and I asked it if I could take it home. Ben was playing football with the guys, but when he came back to the porch, this same ball of fluff – you – curled up on his chest and fell fast asleep. He looked and me and asked if we could take you home. How could I say no? We drove to a friend’s house and grabbed a diaper box to drive you home in. Somehow, on that trip home, we named you Dash, and your little kitty paws and your big-kitty purr stole our hearts.

You became your name, Dash, sneaking out of the house at every opportunity, destroying Ben’s glasses your first night home, trying so hard to charm Annie who was singularly disinterested. You grew into a cat who was so particular about the “right” way to come up for cuddles (pacing back and forth three times, then hopping up), insisting there was only one way to climb up on the bed (always using my nightstand and boombox), creating the nightly ritual of sticking your paw between bed and headboard and batting at our heads, even straightening a painting you knocked askew during one of your “kitty crazies.” Trees held a fascination for you, until you tried to climb one and nearly choked yourself when you suddenly realized how high you were… and then you ran home in a huff. You broke yourself out of the habit of jumping onto the dining room table by falling through it when we took the tabletop off for refinishing. All these years later, we still laugh at your kittenness, and we never stopped calling you “Kitten”.

You grew older and wiser, your body filling out and matching the size of your big long tail, your formerly loud purr (once nicknamed the buzz saw) turning into a deep rumble. I used to ask you where you got your gorgeous gray fur coat, and for some reason you would never divulge that secret to me.

You hated us moving to our big scary house. There were all these places to go and explore, but it was too much for you. You climbed up on the kitchen counter and tried to melt into the particle board. Annie tried to comfort you but jumped down when she saw that we noticed her. But you owned this house, you made it your own, finding all the cool hiding spaces in the ceiling tiles and jumping into the windows anytime you could.

Not long after we moved in, we brought home… a new cat. he was a boy cat who wanted to be everybody’s friend. Annie grew annoyed with him quickly, and I think the two of you conspired to barricade him in the litter box. But somewhere along the way, though, you and Wayne (the Boy) became friends. You would run and play and wrestle all the time, even slowing down once to let me feel how you played.

Over the years, you’ve been the negotiator in the kitty kingdom. You’ve quietly put Annie in her place, befriended the Boy so much that when he ran away you moped around the house for a week until he came home. You befriended Jenny, this enthusiastic spitfire of a dog, showing her with patience and gentleness how to interact with kitties. Your farm-cat skills came in handy whenever a mouse crossed the threshold of our home. You loved being outside in the back yard, rolling around in the dirt. And if you snuck outside between my feet, after a few minutes you would hang around on the neighbor’s fence, meowing your head off because being outside wasn’t fun anymore. You love boxes so much that we leave empty Amazon boxes around the house just so you could have somewhere to nest… so much that when we said goodbye to you, we chose a box rather than an urn for your ashes – you would’ve turned your nose up at the urn, anyway.

Dash – the Box Cat

I would give anything for one more cuddle with you, Dasher. One more snuggle with that deep purr rumbling against my chest. One more time laughing at your back-and-forth back-and-forth back-and-forth JUMP! onto my lap on the couch. One more time that you and Jenny negotiate the best way to share the sunbeam streaming through the window, or the best configuration to share her doggie bed. One more time wondering what you’re “meeeeeeeeeeeeeeeeowing” about. One more time getting my attention by stepping on my foot. One more time that you’re so happy to be with me – and I am NOT done petting you, thank you very much! – that you’re biting my wedding ring and purring at the same time.

I want to remember you for all these things, Dash, because that’s who you were. You were funny and quirky and standoffish and SUCH a wonderful cat.

I’ll never forget you.

Rest in peace, Kitten. May you find all the boxes to sleep in and all the dirt to roll in and all of the cuddles you want ONLY when you want them.

Goodbye, my sweet girl… You’re not hurting anymore.