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Life Unscripted

~ Living Life as I see it… or Don't

Life Unscripted

Monthly Archives: September 2016

Performing in Blindface

30 Friday Sep 2016

Posted by blindbeader in blindness

≈ 1 Comment

“I can hope for the future and live in the present.”
If you are unfamiliar with the #HowEyeSeeIt campaign by Foundation Fighting Blindness, this blog post is a good way to get yourself familiar both with the campaign itself and the emotional backlash that followed. I have very mixed feelings regarding the campaign, but do believe that it’s bad PR for an organization to block, ignore, or otherwise censor respectfully provided negative or neutral feedback.
That being said, this blog post not only laments the blindfold simulation itself, but offers an alternative solution.
Thanks for providing some much-needed clarity to what has proven to be an emotional topic for many over the past several weeks.

adventuresinlowvision's avatarAdventures in Low Vision

 Photo shows a pink fuzzy I'm ask on a white background A fundraising drive related to the blind community went viral. The organization finances great medical research, yet the campaign premise doesn’t sit well with me. I’m split, so I’m reflecting on #HowEyeSeeIt from the Foundation Fighting Blindness (FFB). Yep, I’m diving into the deep end.

FFB’s digital awareness campaign encourages people with vision loss to ask others to wear a blindfold and do a task together. They record it for social media and label it #HowEyeSeeIt. Amateur, professional, and nationally broadcasted stories were created. Some people pushed back and expressed opposition and rejection of the blindfold usage. The National Federation of the Blind released a letter written by President Riccobono admonishing it. People in the blind community reported censored comments or blocks on FFB’s social media accounts. FFB, a private organization, has the right to delete/block communications on their accounts, but has publicly stated it is not blocking or banning…

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Growing up and the “Good Book”: Reflections on a Year at Bible School

23 Friday Sep 2016

Posted by blindbeader in blindness, Uncategorized

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growing up, life lessons, personal

Ten years ago – has it really been that long? – I found myself in a remarkably similar circumstance to the one I am currently facing. Out of work, in a place of personal, spiritual and professional transformation, I decided to take the plunge and spend a year at a small unaccredited Bible college. My choice was made because of a complicated combination of financial and theological crossroads, and it’s a decision that I have never regretted.

 

So why am I writing this now, a decade later? A combination of reasons. One of the benefits of being out of work is the ability to read books by a wide variety of people – those who have embraced the Christian faith wholeheartedly, those who have abandoned it due to pain or abuse, and those who struggle to believe. It’s beautiful and tragic and messy, seeing those who share my faith embrace some fellow earth-dwellers and reject others, those who no longer share my faith who cry and wrestle with those who do and whom they love, and those who never shared my faith – or those whose departure from it was particularly traumatic – who become furious at anyone who professes any form of belief in the divine. Such literacy and conversation has rounded out my worldview in ways I never anticipated, and it started at that small Bible college ten years ago. Another reason I decided to write about it is that a friend and classmate wrote of his experience in an articulate, moving reflection (though one that’s more theological than I’m going to get into here).

 

I remember the day I dropped off my application form. The journey to that place is too long to get into here, but I remember thinking that it was foolish for me to be out of work and wanting to spend money to study the Bible… but I had to do it for reasons that I still can’t quite explain. I remember calling the school, being so lost in a residential area, expecting more foot traffic than I got, and having one of the instructors come out and meet me. I was so embarrassed, but I put in my application (and, not 3 hours later, received a part-time job offer that would work around my class schedule). After being accepted, I wondered how my classmates and instructors would accept me as a blind student – I worried for nothing.

 

Our courses were a combination of Bible study, interpretation, and practical Christian living. We read the whole Bible during the course of that year – when I discovered all the passages about justice for the oppressed that I had never encountered in my previous church experiences. We discussed living on earth and a home in heaven and how to emphasize both and neglect neither. We volunteered in organizations that challenged us, that showed us poverty or illness or disability. Along with classes and short-term missions trips and volunteering and working, I found my faith changing from a loud, boisterous show of enthusiasm to something quieter, something stronger, something harder to describe. Along with that spiritual struggle – because that’s what it was – came the most complete exhaustion I have ever felt in my life. I was in many ways happier and busier than I ever had been, but my schedule was so hectic that I would go to my little basement apartment after a day of classes and/or volunteering and/or working, say hi to my roommate, and fall exhausted into bed… only to do it all over again the next day.

 

But it wasn’t all hard work; in many ways it was a ton of fun. My classmates took me in as one of their own – pushing me beyond my comfort zone, asking questions, all but stapling my pants to the piano bench during chapel because I was the only student who was even remotely willing to play the piano publicly. I fell in love with the piano again during that year, frequently taking time alone in the chapel to decompress and play that out-of-tune upright that belonged in a 1900s saloon. I found out later that the entire school could hear me, and more than once someone would slip quietly into the chapel and hear me sing hymns or write chord progressions or just make up little ditties where my fingers would dance across the keys.

 

I not only learned a lot from instructors, but many of my classmates taught me about openness and generosity. Within two weeks of starting classes, I moved from an apartment into a basement suite, and no fewer than half my classmates helped move my stuff (in the rain) and helped clean up my old apartment. Over the year, many cried with me, some sang with me, even more laughed with me, others encouraged me to jump off a roof into a snowbank (my other option was to climb down the ladder after 20 minutes of panicking). I hated to feel like I needed help with anything, ever, but both classmates and staff patiently helped me realize that everyone needs help sometimes, and that’s OK.

 

Instructors were accommodating in most ways. Even the one who seemed to never get me assignments or tests on time – due to his reluctance to use email – let me explore with my hands a model of the Old Testament Tabernacle. Another instructor shared of his faith journey with such vulnerability that I related to him so completely. Another listened to me obsess and worry when my feelings for this guy who was “just a friend” had morphed into something I didn’t even recognize or want to acknowledge as romantic intentions. Still another gave me a ride to class once a week, allowing me to sleep in an extra thirty minutes; that thirty minutes was so small in the grand scheme of space and time, but it was inestimable in its impact. Looking back on it, I learned more about self-care at Bible college than I ever learned anywhere else. It’s a term that doesn’t appear in the Bible, though the concept certainly does.

 

2006 – looking back on it – was truly a pivotal year in my life. I moved in with my first roommate (the first time I ever shared space with anyone as a contemporary), I met the man who would become my husband, I grew (as many people that age do) in maturity and life experience, and my faith morphed from the experiential into something more systematic and sustainable. It was the year I learned to carve out my own identity, discovered it was OK to not be OK all the time, and that sometimes quiet reflection makes you stronger than just faking it. Maybe I would’ve learned those lessons in other ways had I not attended that small Bible school, but I didn’t learn them elsewhere, and I wouldn’t have it any other way.

The Empowered Series: Celebrate You

16 Friday Sep 2016

Posted by blindbeader in The Empowered Series

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autism, Celebrate You, family, neurodiversity, pride

I’ve gotten to know my next feature in my Empowered Series, Joshua White, on Twitter over the past several months. We’ve spoken primarily about disability, self-esteem, and ableism. When I saw that Joshua had his own business featuring neurodivergent themed T-shirts, I asked if he’d be willing to be featured on my blog. Thanks, Joshua, for your openness and candor, and answering all of my silly questions.

 

About Joshua

 

Joshua lives in North Carolina with his wife, two children, and four cats. He describes his family as “neurodivergent”, and they share many hobbies (among them watching Star Trek and playing Minecraft).
Fifteen years ago, at the age of 21, Joshua was diagnosed with autism. Prior to his diagnosis, he was not provided with supports in the public school system and completed his high school with the Commonwealth Challenge (a program led by Marine and Army drill sergeants). After several years struggling to find a way to make it on his own, Joshua moved to North Carolina with his wife and her children. He is now studying social work in college and running his T-shirt selling business, Celebrate You.

 

About Celebrate You

 

Celebrate You is an online shop that sells neurodiversity themed merchandise as a way to raise awareness about what neurodiversity is, as well as providing a visual reminder that neurodiversity doesn’t mean “bad”, just “different.” Using t-shirts is a public way for those with neurodiverse conditions to show that they are proud of who they are, and hopes to foster understanding with a neurotypical community that can sometimes view neurodiversity as something to be hidden or changed or downplayed. Joshua believes that his recent success at college is due to the fact that he learned to embrace his particular learning style (he’s a visual learner and tends to notice patterns that neurotypicals may miss); he believes that once other neurodivergent people embrace how they best learn and function, they can also reach a place of self-acceptance and success in school, the workplace, and everyday life. Joshua says he didn’t have any autistic role models growing up, and he wants to use his shop as a way to not only support his family, but to show his neurodivergent son that autism in and of itself doesn’t hold him back.

 

How it Works

 

The designs are brain-childs of Joshua White and his friend Chelsea Yarger. Joshua uses an open source imaging software called GIMP to design logos, and uploads them to the Celebrate You shop. The TeePublic web site hosts his online store and then prints and ships the purchased products to customers.

 

What’s Next?

 

Joshua would love to be able to finish his Batchelor’s Degree at Appalachian State and move his family to Boone, North Carolina. He hopes to continue to raise awareness and pride among young neurodivergent people – something he never had – and help support his family. He is overwhelmed by the support and encouragement he has received and hopes the support will continue, not only for himself, but to spread the message that neurodiversity is nothing to be ashamed of and can even be something of which to be proud.

When Life just Doesn’t Seem Fair

09 Friday Sep 2016

Posted by blindbeader in Uncategorized

≈ 3 Comments

Tags

anniversaries, babies, changes, communication, employment, hoping, life lessons, relationships, struggling, success, weddings

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.

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