Tag Archives: relationships

Life on the Open Road: The Epic Road trip of Awesome

03 Sunday Sep 2017

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Two hours ago, five weary travelers (four human and one canine) entered the city limits of Edmonton, Alberta, after a nine-day road trip. Nine days of laughter, of music, of occasional friction, of teamwork… of lots and lots of driving.

After nine days – over 5,000 kilometers and 60 hours – of travel through two provinces and five states, dispersed amongst sight-seeing and shopping and eating and picture-taking, I can honestly say that relationships were formed and strengthened over this trip. Dreams were born, there were some disappointments, but overall we all still wanted to be in each other’s company when it was all over.

It wasn’t all smooth sailing, and if I could I might have changed some things. And yet, it’s in those moments that I realize that any changes would’ve made it a diferent trip entirely – with different frictions, problems and priorities. I loved this trip the way it was; it provided me a much-needed perspective I doubt I could’ve had any other way.

So many people made this trip possible. A friend lent us a tent for the journey, others watched our home while we were away. Friends and family offered traveling tips and advice (none of whom said the words “Are you NUTS!?” – for which I am grateful), while others gave me practical birthday gifts that I could use on the road (even down to marking shampoo bottles). Employers provided time off of work, friends and strangers on the road opened their facilities, their guidance, and their hospitality to us.

And I can’t say enough about my traveling companions. I couldn’t have done this trip without you. and – as Ben said earlier tonight – I can’t imagine doing this trip with anyone but you.

Over the next couple of weeks, I will be posting my own experiences on this Epic Road Trip of Awesome. Come along with me; it’s gonna be a wild ride.

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.

When Life just Doesn’t Seem Fair

09 Friday Sep 2016

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Sometimes, life just doesn’t seem equitable, reasonable, or – dare I say it? – fair. Think of discrimination, ableism, injustice for starters. For the most part, it seems clear that in those instances there is a right and a wrong, a hero and a villain. But what if – as in much of life – there is no hero or villain? What if life seems to go swimmingly for someone you know and love, someone you wish the best for… someone who gets the one thing you’ve fought for, prayed for, dreamed of for so long? And what if you are that friend, relative or loved one, who knows someone who has struggled so much with something that seems to have come to you so easily?
I’ve been there. I’ve been on both ends of this theoretical table, and I can’t say I have any easy answers. A year ago I got myself a shiny new job, with all of the hope that entails, and I felt intensely guilty about having success after a sudden layoff, while many others – with and without disabilities, with a wide variety of skills – were struggling just to get interviews. Now that I’ve been back on the employment journey for several months, I’ve seen many others find the success I’ve previously enjoyed, even while I am struggling and pushing against discrimination disguised as compliments on how inspirational I am. It is their time to shine – it truly is – but while I wish them nothing but happiness, their success makes me both thrilled and miserable simultaneously.

But it’s not only about employment. What about being the “token single” in a huge group full of couples? Or the only (involuntarily) childless couple in your church congregation? Attending or planning a wedding after a messy breakup or the death of a partner is both joyous and heartbreaking…

And those who are rejoicing are often struggling to reconcile their obvious (and reasonable) joy with the thought they can’t laugh as loudly or smile as broadly because they know and love someone who feels like that laughter and those smiles are shots to the heart.

So what do we do? We can’t walk around dressed in metaphorical black all the time – life is full of joy and sorrow, and we can’t deny the existance of either. We all love, hurt, succeed and fail – and those who truly care about us understand that our tears of joy at their celebration mingle with those of frustration or (occasionally) despair that we’re still hoping or fighting or praying for that same thing for ourselves. No true friend or loved one wants to take away the joy and success of another. And when we have that success, we feel guilty in a way – that we can’t sprinkle magic dust on those we love and grant them in equal portion the joy we’ve found through love, birth, employment, celebration.

But, please, I beg you, wherever you are, whatever your circumstances, don’t deny your joy, your pain, your frustration, your love. Those who are struggling, wish all the success and happiness in the world to those of whom you are envious; if they’ve done nothing hurtful or illegal or unethical, they deserve that happiness. And for those who are thrilled beyond words at your new job, expected baby, celebration of love… gently share that joy with us who are currently not as fortunate. In your sensitivity to those fragile feelings of hopelessness and despair, you both acknowledge your happiness (there’s no need to hide it) and the complex emotions of support and envy of those who currently can’t celebrate such success for themselves. And yet… don’t hide it! Please, don’t hide it! Your happiness, success, and joy tells those of us fighting in the trenches – in moments of weakness and darkness and pain – that one day, it will be us, and you’ll be right there cheering us on and lifting us up and holding our hands as we welcome our own joy and success into our lives.

Flying Blind

14 Sunday Feb 2016

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OK, I’m caving… since I’m a bit of a grump regarding all things Valentine’s Day, this should come as no surprise to people who know me well. For those of you who don’t, that’s OK… but you can send me chocolate or buy me a coffee if you love my Valentine’s Day post. 🙂

 

About a month ago, nearly a year after its publication, this blog post blew up twitter and Facebook. The rage was palpable from blind people all over the western world and from their partners, sighted and blind alike. I addressed many of these common perceptions  in my most popular blog post ever, so I won’t belabor the point here, but it came as a surprise coming from an organization that claims to serve the blind community.

 

English is clearly not this author’s first language, and it’s entirely possible that culture (in whatever context that is) played a role in the article itself. But I completely disagree with the idea of allowing partners (current or prospective) to be smothering and hovering – even a couple of times – until we prove to them that we are capable. Such behavior sets up precedent of one partner viewing themselves more capable than the other, due to the very nature of one partner having a disability and the other not. This doesn’t even address the idea that two partners can have a happy, healthy relationship while both having disabilities (some couples share disability, while I know others who have different ones). Either way, it’s incredibly presumptuous for anyone to think that all people with disabilities should have an able-bodied partner, or that we should “stick with our own kind”; both ideas are incredibly damaging both to our prospects for relationships and to our own autonomy in choosing partners.

 

Whatever our disability status and that of our partners, the important thing is to allow them to fly, not clip their wings until WE feel things are OK. I’m not talking about making wise financial choices about when one partner should go back to school, or keeping your spouse company while they’re cooking in the kitchen (because, like, couples should spend time together or something). In my own opinion, relationships are meant to strengthen each partner when the chips are down and life isn’t that great, to encourage each other when one or the other is struggling, to boost each other’s confidence in their own abilities and encourage each other to try new things. Any stifling, even under the guise of “protection” is almost counter-intuitive.

 

So for those who are in relationships – healthy ones, struggling ones, ones whose time is nearing an end – enjoy each other, not just today, but every day. For those who are single, by choice or by circumstance, I hope there are people in your life who will give you the wings to fly. To those who are happy, share it with others; to those who are hurting, someone – somewhere – wants to help carry you. Above all, after all the Valentine’s Day sweetness has faded, once the flowers have wilted and the candles have melted into small pools of wax, think of all those who love you now – your friends, your family, your partner (if applicable) – and those who haven’t yet crossed your path, and thank them for giving you the wings to fly. Even “flying blind” is safe when there are others who buoy you, encourage you, and help to heal any broken wings along the way.

Not devoted to Blind Devotion

22 Saturday Aug 2015

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I will be the first to admit that portrayals of blind people in books, movies, or articles tend to get my teeth on edge.  Contrary to what many might think I don’t expect a perfect portrayal of who we are, because we are all different, just like sighted people.  But perhaps even with the best of intentions, some of the worst stereotypes about blind people are perpetuated in these books, movies, or articles – that we are angelic inspirational beings for simply living our lives, that we require caretakers for everything from cooking to laundry to shopping, and if we do actually succeed at something it’s viewed as a miraculous feat tantamount to clearing tall buildings in a single bound.  These ideas are frustrating to those of us who live with blindness – and others’ perceptions of it – every day of our lives.

That having been said, few books, movie portrayals, or articles have concerned me quite as much as this video, largely because it’s been shared around the world as a “sweet tearjerker that shows what true love and “blind devotion” really is.

I’m leaving aside here the main character’s perception of what she can and cannot do as someone losing her vision; the anger and denial process are entirely normal, given a diagnosis like hers.  But the ending of the video infuriated me to no end.  It is viewed as sweet, and beautiful, and yet I find it ugly.  For those of you who cannot see (or just don’t feel like watching the video), this video ends with the husband following his blind wife to work every day without her knowledge.  We’re not talking about driving her to work, waiting in the car and watching her get in to a building before driving away; we are talking about physically following her on her walk to work every morning because (I presume based on the video) he doesn’t think of her as capable enough to do it on her own.  As a blind wife with a sighted husband, to me such behavior borders on stalking, and is not adorable and kind, but such a blatant abuse of trust that my blood is boiling even thinking about it.

Committed relationships (marriage in my case) are beautiful, messy and sweet and heart-breaking and restorative.  Relationships are not perfect, whether or not one partner has a disability.  Even if everyone disagrees on acceptable/unacceptable behaviors in any given relationship, I can think of no one who would disagree that trust is a foundation for any successful relationship.  It is one thing to stumble and fall, or be unintentionally hurtful, but to knowingly use your partner’s blindness or deafness to your own advantage – even while fooling yourself into believing it’s being done for their benefit – can shake a relationship to the core when your disabled partner finds out about it (and trust me, we’re not fools; we WILL find out).  Creating an admittedly fictional video as a feel-good look at what “true devotion” really is makes those of us living with blindness choke on the phony sweetness it’s meant to portray.  I have two questions for those who made, produced, and touted this video as sweet and romantic: How would you feel if your spouse went behind your back and, by their actions, showed the entire world – everyone but you – that they viewed you as incapable?  And what if you found out about it weeks, months, or years after the fact?  It isn’t so adorable and sweet now, is it…

If you Want it Done Right, you Do It Yourself… or Ask Someone Else to…

25 Saturday Jul 2015

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Last week I posted on my facebook status a question about which blog topics friends, family and readers wish me to cover. One topic brought up a HUGE level of discussion from blind and sighted friends alike:
When is it appropriate for a sighted person to say no to a request from a blind family member or friend? When is saying no selfish? When should the blind relative/friend take responsibility for themselves and be as independent as possible?

I took to Twitter and asked the question, and the level of responses was astounding. Ultimately, the answers went something like this (and I am inclined to agree):
1) A blind person should do whatever they can to be independent, but (just like sighted people) may find certain skills hard or challenging. Ultimately, making a concerted effort without resounding success is one thing; not even bothering to try in the first place is another.
2) A sighted relative/friend is within their rights to say no to requests if the requests are too frequent, unreasonable, or for a task that the blind person is clearly able to do for him/herself.
3) It IS selfish to say no if the task cannot reasonably be completed by the blind person. For example, if a blind person tries to get a restaurant’s menu online before going out for dinner and finds it inaccessible (embedded picture menus are very common), leaving them twisting in the wind and asking an overworked waiter to read them the menu while you’re sitting right there is unreasonable.

That having been said, it all depends on the friendship or family dynamic. Many sighted people are too quick to step in and do for us what they THINK we cannot do for ourselves; others have super-independent blind friends or relatives who insist on doing everything even if it’s not expected, reasonable, or even requested. My relationship with my friends and family has generally clear boundaries, not because of my blindness or their vision, but because all relationships are give and take and (I hope) communicative. For example: I fold laundry in my house (whenever I get to it); Ben folds the socks. Ben HATES folding clothes, and I don’t mind putting my mad organizational skills to work figuring out how to squeeze that last T-shirt into the dresser drawer. It takes me FOREVER to fold socks, and even then I can’t be sure they match; what takes me an hour with mixed results takes Ben five minutes. We’ve found it a generally fair tradeoff. When it comes to restaurants, if I can’t get the menu online ahead of time, any sighted companion who is dining with me will read me the headings (soups, sandwiches, pastas, wraps) so I can get an overview of the menu without having the whole thing read to me when all I want is pizza.

At the end of the day, it’s up to me, and others, as blind people to do whatever we can reasonably do for ourselves, and politely advocate when things are unnecessarily being done for us; it’s up to friends or relatives to tell us when our requests for assistance are unreasonable (too frequent, cutting in to personal time, without reciprocity). For every person and relationship, the specifics will be different (I love that my husband can cook, but I do some mean cooking myself; others might find cooking scary, challenging, or incomprehensible, and that’s OK). At the end of the day, communication on both sides of the blind/sighted continuum will make boundaries and expectations perfectly clear. So to my blind readers: do what you can, make an effort, ask for help when needed, but be generous with your thanks and mindful of time commitments. To my sighted readers, love us enough to tell us when we ARE being unreasonably “needy”, ask us what you can assist with or if our struggling with a task is necessary so that we can improve it. To everyone, sighted and blind, be quick to listen and slow to speak harshly, and keep an open mind.