What Moves You? A Simple Guide to Disability Story-Sharing

The other day, I shared a great story about Chef Austin, a man with Down Syndrome in Texas who operates his own food truck (in addition to working as a host at a restaurant). I shared it from a FB page for people with disabilities, where the first comment was someone lamenting the “inspiration porn” in front of them. Before you wonder what kind of Facebook pages I follow, let me explain:

The term inspiration porn was coined in 2012 by disability rights activist Stella Young in an editorial in Australian Broadcasting Corporation’s webzine Ramp Up. The term describes when people with disabilities are called inspirational solely or in part on the basis of their disability. – from Wikipedia

So, what’s the difference between a cool story and inspiration porn? If people with disabilities don’t want to be told they’re inspirational, what do they want to be told? What if my friend with a disability accidentally does something brave or amazing, what do I say then?!

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Don’t worry, I’m here to help. I know different things inspire different people. Not to mention I’m hesitant to dismiss all story-sharing about people with disabilities in one fell swoop. There are great stories out there, and we are a very underrepresented bunch.

It’s easy to show you examples of the kind of thing I don’t share, because it’s literally all over the Internet:

Girl Takes Guy with Disability to Prom, Parade Thrown in Her Honor

Person with Disability Plays Sport She Enjoys, Receives Presidential Medal of Freedom

Couple Where One or Both Persons Have Disabilities Love Each Other, Whole Neighborhood is Amazed

Besides being inherently nauseating, these aren’t the best things to share because the entire REASON the person in the photo/story is inspirational is that they’re Existing and Doing Normal Human Things While Disabled. The reason their friends or partners are inspirational is because they are Loving Someone That Is In Some Way Different From Them.

We can do better, y’all.

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Just. Say. No.

I have a simple suggestion. It’s one I use to guide my story-sharing. Before I share, I ask myself: What moves me in this story? If I can’t come up with anything better than He/She/They _________ Even Though He/She/They Have a Disability/Are a Minority/Are GLBTQ, then it’s a hard pass.

There is absolutely nothing wrong with being moved by courage, determination, or overcoming of obstacles. It’s just a good idea in general to be able to articulate why you look up to someone in terms other than their mere existence.

The reason I shared Chef Austin’s story wasn’t that making hot dogs takes bravery or that I was wow’ed by his “employability” in spite of his disability. He just has a really cool support system, and I think it’s rad that he works two jobs (it’s all I can do to work one).

If someone is being a trailblazer, if a community is using a great system to be more inclusive,  or if someone has a great sense of humor about a crummy situation that they are utilizing to uplift themselves and others, it’s a good story, and it’s worth sharing.

Everything else is just a bad Lifetime Movie.

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To Whoever Made the Original Meme: Please stop using a computer.

Disability is certainly part of my story, but it is not the only reason that something I accomplish is impressive, the quality of a relationships I’m a part of is good, or that all my jokes are funny. A good story has downs as well as ups. A good character has flaws as well as virtues. Does the article I’m reading tell more about the person than their difference? Do I get to know their interests, their struggles, and their frustrations? Do they have a part in telling their own story, or do others tell it for them?

For every feel-good-fluff-piece about a Waterskiing Squirrel or a Disabled Person Doing Things, there’s a another great story about a Person Innovating, a Person Creating, or a Community Coming Together to Change a Broken System. We just have to dig deeper and ask ourselves: What Moves Me. . . and Why?

Reaching for Paschal Joy

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Yesterday was Pascha (Easter) for Orthodox Christians. The Crown Jewel of the Church year, it’s a truly joyous experience that gives the soul a foretaste of heavenly banquet. Pascha is a night full of ancient, elaborate rites followed by a decadent meal that kicks off  luxurious week of feasting.

In some ways, this year was like others have been: a challenging Lent, an introspective Holy Week, and a Pascha surrounded by friends and family.

There was one important difference.

Last night, while out celebrating, I had one of my first anxiety attacks in months.

In a matter of minutes, I went from pleasant chatter to crippling fear, hyperventilating, shaking, and uncontrollable sobs. . . in public. Luckily I was with my husband and one of my best friends, who faces similar challenges. They both talked me down, and I ended the evening with peace of mind and gratitude for my amazing support system.

But I couldn’t shake my sense of shame and embarrassment, not to mention how isolating and joy-sucking a very public anxiety attack can be. All throughout today, I had a rough battle with sadness and despondence. But then I remembered Thomas.

The first Pascha ever, Christ appeared to the disciples, but Thomas ran late. He had to have felt despondent and isolated. He had to have been frustrated beyond belief.  But a week later, he has an amazing experience.

Now Thomas, called the Twin, one of the twelve, was not with them when Jesus came. The other disciples therefore said to him, “We have seen the Lord.” So he said to them, “Unless I see in His hands the print of the nails, and put my finger into the print of the nails, and put my hand into His side, I will not believe.”

And after eight days His disciples were again inside, and Thomas with them. Jesus came, the doors being shut, and stood in the midst, and said, “Peace to you!” Then He said to Thomas, “Reach your finger here, and look at My hands; and reach your hand here, and put it into My side. Do not be unbelieving, but believing.”

And Thomas answered and said to Him, “My Lord and my God!” – John 20:24-29

Below: My nephew Parker watches his Auntie Beth sing a Paschal hymn.

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No one is without struggle and weakness, especially not the Saints of the Church. The thing I take from Thomas is not that he doubts, but that he presses on. And of course, the true beauty of the story is that he got to reach out and touch Love Incarnate in the hour of his greatest need.

I’m still feeling drained, sad,  and vulnerable after last night’s episode.  It’s a constant struggle against worry and guilt when depression and anxiety are at the reins. But that’s okay. I had a really imperfect Lent, but that’s okay. Even Pascha was challenging in some ways, but that’s okay. The Apostle Thomas reminds me that Paschal joy lasts a LOT longer than one night. And no matter what, Christ can meet me where I am: His Love is always within my reach.

An Artist’s Duty: A Conversation with Aleta Myles

Creativity is intertwined with culture. Art has long been a form of activism, a way to change the status quo. Everyone making art wants to change perceptions, to challenge stereotypes. The most important artists of our time are those who dream of leaving the world a better place than they found it. And some are realizing that dream.

My friend Aleta Myles is an actor, singer, makeup artist, and YouTube star with a passion for starting dialogue through art, and building bridges with storytelling. Whether you’re left laughing, crying, or thinking in a new way, Aleta and her work will change you.

For her, creativity is an integral part of the human conversation. Making art can be a step on the pathway to healing.  She and I had a great talk recently about what it means to be an artist, and the role of artistic expression in creating community.

[BTW: There’s a lack-of-line-break weirdness below that I’m still trying to fix. Thank you for your patience!]

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Of the characters you’ve created, do you have a favorite? Why or why not? Which
character do you most identify with?
 I don’t know if I would say [I have a] favorite. There are a few whom I have fleshed out a bit more so they are easier to work with. I have feel very attached to them and love them for different reasons. I really wish they weren’t me so I could hang out with them. They all carry elements of my personality and beliefs, even if it’s wacky or silly. I have yet to create a character that has conflicted with me: if they do they don’t stay around long.
Who are your heroes and why?
I’m still gaining heroes but I will say Carol Burnett, Tracy Ullman and In Living Color had a huge effect on me. I love watching them and laughing. Annie [the movie] has always been my favorite. When I first saw Carol Burnett, I was in love. She was silly and not afraid to be crazy. I have real life heroes who are actors that i get to work with and call my friends, they inspire me more than anything. I am inspired by the bravery of artists. I am inspired by vulnerability. To be an artist and to be an actor is the most vulnerable thing you can do…if you do it right…it’s not pretend it is a form of vulnerability. 
What are your goals or resolutions for this year?
My goals are to keep creating and ask questions later. I tend to question things to death, instead of releasing content. I’m also resolving to floss more.
How does being a black woman living in America shape your art or your approach to art?
You can have a few approaches as a Black creative: you can speak about your difference and celebrate it, highlight the needs, highlight the humanity  or for some it never comes into question: they don’t identify their culture and their art together.
I love the quote from Nina Simone: “You can’t help it. An artist’s duty, as far as I’m concerned, is to reflect the times.”   It’s a line that is good to blur into one. Sometimes I battle because I love creating characters and I love humor. When it comes to the heart and things that are important to me, I would rather have a conversation about it. I haven’t [fully] learned the art of letting my humor in when it comes to things that make my heart beat fast!  I’m [still] learning.
I’m more of a therapist/ educator when it comes to speaking on current events and history. My other struggle  is possibly just my own,  but I loathe the way my ancestors had to come through minstrel shows and some of the content that was created with them as the joke. Sometimes I struggle with being perceived as a minstrel show because I am funny woman of color. I never want that. I know people whose content is considered “chittlin circuit” but i just want to create content without it being put in another box. 
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What does diversity mean to you?
Diversity is not being able to tell who is in “the Majority”. There is enough uniqueness to be represented that is most definitely NOT represented. Diversity needs to represent the world we live in and having the conversations that break down things that separate us. The lack of diversity is SO strong in American entertainment that when you try to create content that is “diverse” people don’t think it’s believable. But that is only because folks need time to change their entertainment diet–they’ll get used to it and start to enjoy it when you put it on their plate more than once a year.
What was the last book you read?
I last read the Autobiography of Frederick Douglass. [It was] Black History Month so I felt it was a good choice!
 What issues affecting you/your community are you most passionate about? 
The justice system, laws that are in effect that are oppressive, housing inequality, education inequality, financial inequality… [When I] talk about these issues people often either roll their eyes [or] under their breath say, ” It’s not that bad” “Get over it” or “All lives matter” . . .  When I hear that, I think, “That’s an amazing point of view when it’s not affecting you. What you mean is it’s not that bad for YOU. So let’s get down to the root. YOU don’t care. Just say that”.  I am not afraid of those conversations because honesty is  the start to healing.
Can art and creativity solve social problems? (Why or why not?)
Most definitely! Art opens the soul and then you can insert truth. The arts are cathartic. It isn’t the only way to solve problems but it is one way.
What progress can you see in diversity/inclusion of everyone in the human story?
Love. When you can see we are all human and broken and it’s celebrated…that is LOVE…that is God’s best, in my opinion. We are made beautifully broken.
James Baldwin said : 
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Boom! Enough said. Healing hurts. Prejudice is so arrogant and fearful: it clings on being “right” it doesn’t want to be healed because it’s afraid of pain. But the pain won’t last. Healing is possible.
What work still needs to be done to better celebrate diversity and inclusion and how do artists help? 
Art is a way of allowing people to tell their stories. Being honest about your journey is healing to you and others. Let people tell THEIR OWN story…not a second hand observance of what you think someone is dealing with. Empathy is awesome but it is still coming through your filter of understanding. I think we need to shut up and listen to each other. 
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Aleta Myles lives and works in Nashville, TN. To learn more about her work, watch her videos, or contact her for a booking, please visit her website and social media pages. 

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Book Review Roundup: Jan-Feb 2016

In an effort to keep better track of my reading goals this year [and hold myself accountable],  I’m starting a monthly Book Review Roundup of the books I read in the previous month. I expect the fare to be a mix between authors I know who release new books, books I’ve had for eons [that I’m just now reading], and recommendations. Since I’m starting a month and a half into the year, this list combines my January and February reads.

The Gurus, The Young Man, and Elder Paisios
4.5 stars/Recommend 

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A really engaging read, even if you don’t practice Orthodox Christianity. Who doesn’t love a true story based in exotic locales? A man’s empirical search for theological and metaphysical truth leads him on a journey around the world, and eventually back to his spiritual roots. Elder Paisios had a reputation for boundless love and mercy toward the “spiritual children” who came to him for advice, and that love is brought to life in the stories from this book. I would recommend it for anyone with an interest in spirituality, mysticism, and world religions. It’s a memoir-not theological instruction-so it’s very accessible [not the case for all Orthodox books, let me tell you]. My only critique is that some of the phrasings and terminology may be a little unfamiliar to non-Orthodox readers, but that’s a minor issue that shouldn’t deter from your overall enjoyment of the book.

A Plain Scandal

2.5 stars/Don’t Recommend 

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I had no clue until very recently that Amish Christian Fiction was a thing. To clarify, that’s fiction written by Christians [presumably for Christians], about Amish people. [Not written by Amish people for other Christians.] The idea of Christian/Amish romance did exactly zero for me, so I decided to go the mystery route. Having an ingrained distaste for by-Christian-for-Christian popular media, I was very reluctant to read it. But I’m trying to do this thing nowadays where I don’t make snap judgements and actually look into things for myself. So, I read A Plain Scandal.  It was not wholly unpleasant, but I was underwhelmed. I would recommend it to young adults who are not quite ready for explicit content. And people who already like the genre would probably enjoy it. Otherwise, it’s slow-moving, predictable, and anemically written. A Plain Scandal is well-intentioned and not entirely without merit, but Flower’s attempt to create mystery and romance with a squeaky-clean cast makes it hard for the average person to relate, Christian or not. Word to the wise: if you want smoldering intrigue and palpable romance that leaves the really choice bits to the imagination, without insulting your intelligence,  just read Jane Austen.

Landline

4 stars/Recommend

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Landline was a Christmas gift from Emily and Anne (2 of my rad sisters-in-law). I read it in 3 sittings and enjoyed it throughly. The conflict in Landline was believable enough to make me uncomfortable, while remaining an overall quirky and hopeful story.  Georgie McCool discovers a phone in her closet that lets her call her husband . . . in the past. What will she do with her second chance at love? Rainbow Rowell  writes intelligent chick-lit, full of sympathetic, lovable characters who mean well and do the right thing, even if they cuss now and then. I’m looking forward to reading more of her books. I’d recommend Landline for a good weekend read, especially if you’re in the mood for awkward humor and happy endings.

 

So that’s my round-up for the month. Two outta three ain’t bad. Tune in next month to see what delights and disappoints. And as always, let me know what you’re reading (and if you’d recommend it) in the comments!

One More Thing (on Social and Political Change)

charles-darwin-sssshh-ofset-to-right-of-frameBecause of its tendency to polarize and alienate people, and how easy it is for online “discussions” to lose control to third/fourth/fifth parties, I have resolved to no longer engage in emotionally charged social and political discourse on Facebook (or social media in general).

This doesn’t mean I don’t have strong beliefs and opinions, or that I don’t care about voting or community activism. It doesn’t mean I don’t think speaking one’s mind is important. I think there are many people who are gifted at political discourse, activism, organizing and social theory, and they continue to share those gifts.

I have simply come to the conclusion that it is more beneficial and fruitful for me to have these discussions in an environment that is controlled, peaceful, and personal. It is way too easy for me to dehumanize  another when we use machines to communicate.

If I share something, I want it to be in the spirit of sharing what I learned, how something helped, edified, or challenged me, not as a means to shame my detractors.

(I have not “arrived” or perfected any of this. I’m writing this- all of this- for the same reason I write anything down- to hold myself accountable; to preserve my commitment for posterity.)

Beyond that, I don’t feel it’s my prerogative to make sure an online acquaintance changes his mind, or that a friend changes her opinion and votes for the same person I do. I am not obligated to answer for their choices.

The best I can do is set a watchman for my conscience, my feelings toward others, and my own behavior. I think the best way for me to change the world is to change it around me, through interacting with people and with my community at large.

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Some will disagree with me and take the big picture approach. Some will see things more the way I do. Both have their benefits. Both can and do have positive outcomes. One is just a better choice for my own peace of mind and relationships than the other.

With some professional guidance, I realized that If I focused the same energy I expend trying to convince others to see my way, if I channeled that into action, big or small,  my relationships and my community would transform. [Wow, I thought. What if all people had this approach.]

With all that said, it would be hypocritical for me to tell you who to vote for, how to voice your opinion, what to protest, how to act. When it comes to choosing your candidate, your cause, or your way to take action, there’s only one thing I can ask people I care about to do.

And it’s the same thing I’m asking of myself:

When you make your choice, do it with intention. Doing one small thing that you know will have an effect changes more than sitting idle for hours, stewing in anger and contempt. If your conscience tells you that something (or someone) is morally repugnant, align yourself elsewhere.  If you want to change a social or political reality, take an action that answers the call of your conscience. Whatever you choose to do, do it to strengthen your community, not to tear down someone else. While it’s always nice when others join you, sometimes they won’t. Don’t lose heart. Act in a way that leaves you at peace and doesn’t betray yourself. You can act big, or small. The important thing is to act from kindness, in earnest, and with empathy.

Here’s hoping.

What’s My Motivation? Changing What I Share Online

The Internet: Part information superhighway, part Eternal Troll Cave of Fathomless Depths. I used to love it. As someone whose driving motivation was understanding and solving social problems, I saw Facebook as my personal megaphone. It was a towering soapbox  from which I could denounce the social/political/moral evils surrounding me.

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My Resting Scroll Face

I would type out a fiery diatribe and gleefully hit send, shocked when my condescending drivel wasn’t readily embraced by the masses. Yes, I would think, I’m making a stand. I’m speaking up for what’s right: me. 

Wait. Aren’t you a Christian? You guys are all about denouncing some moral evils, right?

Yes. I am called to put a stop to thoughts and behaviors that are contrary to loving God and  neighbor. But I’m supposed to do that in my own life before I even think of “helping” someone else “see the error of their ways”.  Reminds me of a quote I saw today by St. Maximos the Confessor:

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Focusing on changing everyone on my News Feed for the better renders my own change null and void? Dag. Is it just me, or do the Saints straight-up roast people sometimes?

Beyond that, I’m starting to believe it’s impossible to have meaningful discussion [read: debate] on social media. Why?

  • I could be wrong. There, I said it. Hey, anything’s possible.
  • I can be right and still be mean or condescending about it. And that’s wrong.
  • I could assume someone I don’t agree with is bad or evil, without knowing all the facts (which I never will anyway). And that’s judging.
  • I will probably get angry more quickly (and for longer) online than I would in person. The vitriol/intensity of the Internet and the way opinions are written there makes it a breeding ground for angry, spiteful and otherwise violent communication.
  • It’s public. Eliminating the privacy of a face-to-face conversation almost guarantees that someone else will weigh in, take something out of context, gang up on one of us, and so on.

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When I disagree with, denounce, or vilify someone else’s perspective/political party/difference of opinion online, they can see it. [Even if I passive-aggressively Vaguebook about how wrong “some people” are on my own timeline.] And everyone else we’re friends with can see it, too. Not to mention our little tête à tête  is saved for posterity. Plus there’s never really been a time when I’ve thought: Wow. That gloves-are-off Facebook debate really brought us closer.

So, if I’m going to post something online, I start with asking myself something simple: why am I sharing this?

Is it:

  • Because I’m angry?
  • To declare how right I am?
  • To declare how wrong you are?
  • To make “the other side” [or people who identify with them] look bad, or foolish?

If the answer is yes, I need to re-think. As cheesy as this little mnemonic is, it’s really helpful for us social media mavens:

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The first time I saw this, I thought something alone the lines of: well, guess I have to delete Facebook and stop blogging. I didn’t blog or stir the pot on Facebook for months. I tried my hand at holding my tongue (my success varied widely from day to day). And while I try to be much more careful about the tone of what I post now than I used to, I still believe social media and blogging are powerful ways of sharing new ideas, and building connections rooted in empathy rather than same-ness of opinion.

Filtering what I share doesn’t mean I can’t post about tricky issues or things I care about, or that I’m suggesting Shrinking Violet is the New Black. My desire for a peaceful newsfeed does not cancel out my strong convictions. The key is changing the focus of the material I post from “what they’re doing wrong”  to “what’s helping me do better”.

What did this teach me?

How is this helping me be a better human?

What about this situation worries or troubles me?  

I know this is a problem. What is a solution I can realize in my day to day interactions and/or in my community?

 If my main goal really is to change myself for the better, I can share  things in terms of what I learned, or how something helped me change my perspective. If something is important to me, I can simply say that before sharing, without bringing what “some people” think into it. If someone misspeaks online and the error could hurt them or others, I can do my best to gently present my point of view.

All in all, I’m learning it’s best for my peace of mind (and my relationships) not to get too deep into a Facebook face-off. In general, I think the tricky things are best discussed with a friend, over cold beer and Hot Chicken.

Part of the Story: Lego, Neil Gaiman, and the Importance of Inclusion

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The new wheelchair-using Lego MiniFigure (Photo by Daniel Karmann/AFP/Getty Images)

My friend Alex just sent me a truly wonderful write-up from the Guardian about the newest member of the Lego MiniFigure family, who happens to use a wheelchair. He will be a part of their Fun in the Park set, which you will be able to buy for me as a half-birthday gift this June.

Even though you can build your own Lego-Person-in-a-Wheelchair, people are rightfully stoked over this new arrival. Even Lego was taken aback by the enthusiasm. Why all the hubbub? Because making something widely available that represents a person with a disability as a typical member of the community is the type of classy move that should become normalized. Like opening the door for someone else, or wearing a monocle.

For many people with disabilities, it is still remarkable to see examples of our experience in popular culture that are not somehow tinged with pity, otherness, or negativity. Think of the movies, television, commercials, books, art, modeling, and photography you’ve seen recently.

When did you last see

Someone using a wheelchair, walker, cane, or crutches?

A deaf or hard-of-hearing person?

A blind or visually-impaired person?

An autistic person?

Someone with an intellectual disability?

Someone with an “invisible” disability?

A person with mental illness?

And what was their story like? How well and fully did you get to know them: their flaws, their quirks, their sense of humor?

It doesn’t work to have a person with a disability in every story, playing every role, etc. And I don’t consider myself someone easily offended or looking to pick a fight in that arena. But disability is a big part of our human story. So, I’d appreciate an acknowledgement of that fact that more than a handful of times a decade.

And the way a story is told is important, too. 2108198

To be honest, I’m still surprised every time I see someone with a disability represented in media, art or pop culture in anything other than a stereotypical manner. If the disabled character isn’t a token, a poster child, a weakling, a burden, an utter inspiration, or a saint, it’s safe to say I’m sufficiently shocked.

Playing a part in the pop cultural/social/artistic narrative- and the complexity/significance of that role- has far-reaching importance. When I see someone I identify with, I am reminded of my own role in the world. It is a welcome affirmation of my own significance my community, and in the lives of those around me. But when my experience is wholly absent from the most popular media, the most widely read stories, it is difficult to believe that society expects me to play an important part.

Of course, I know there examples and exceptions beyond our Lego friend. One of the more notable ones is Odd & the Frost Giants by Neil Gaiman. I won’t give anything away except the part that made me cry snotty tears (thanks, Neil). When Odd is offered a chance to have his “bum” leg exchanged for a “better” one, he refuses. It’s a pain sometimes, but overall, Odd likes himself and his life the way they are, weakness and all.

Odd shows us that the adventure of life should be inclusive; and that life is more about goodness than perfection. And Lego Guy reminds us that people with disabilities are pretty chill for the most part, and spend a lot of our time doing non-inspiring things.

But perhaps the most important thing Odd and the Lego Guy are teaching me is this: one sure way to fill the gaps of cultural invisibility is with creativity, with art, and with the truth of my own story.