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?

Small Things/ Great Love

A couple of months ago, while talking to my priest. I was doing my usual: unpacking my laundry list of worries about life and the cosmos. And I don’t just talk about my worries, y’all. I pile them up. I stack them carefully, one on top of another, like scary, toxic Fear Pancakes:

Well, what about racism and police brutality?

What about global warming?

What about natural disasters and the end times and the future and GMOs and- and- and. . . 

You get the idea. We’ve all been there: that point where we are literally Can’t Even-ing because the Whole Entire Flip-Flappin’ World is just so Out-Of-Its Mind-Crazy. But I had stayed there in that state of mind and pitched a tent. I scrolled through (and wallowed in) the misery of the world and drank up all the injustice I saw in a medium where [more often than not- I know there are exceptions] no direct action can be taken by me to fix the problem.

For an aspiring social activist, I was pretty immobilized But that’s what happens when exposure is equated to involvement. The choir and I took turns preaching, we all shouted AMEN. I wrote the perfectly researched comments that silenced my opponents. I had become callous in the name of caring. I had replaced engaged with enraged. And I was beginning to drown. In fact, I noticed that the discourse on Social Media was simultaneously doing the following [and on a 24-hour, ever refreshing loop]:

Demanding I care passionately, constantly

Demanding I demonstrate I care in a specific way

Heavily implying [or outright stating] that to the degree I didn’t post, discuss, or engage in a public forum, I didn’t care.

Is it just me, or does the News Feed turn social causes and opinions into that horrible snob in every 80s coming of age movie? You know, the one who pressured their boyfriend or girlfriend with the words “You would if you really loved me”.  So much of the rhetoric on The Book turns everyone into That Guy [or Girl, anyone can be a jerk]. I see it happen all the time.

And if I’m being honest, I’ve been That Person often, and I’ve done so in the name of being correct, open-minded or [worst of all] theologically sound. I’ve done it for the recognition, for the praise, and to prove my own moral amazingness. And that both humbles me and grosses me out.

While it’s a great tool for fast communication and spread of good ideas and causes, Social Media and the Internet can also increase feelings of alienation, polarization [us vs. them], and snap judgement.

What- in a normal conversation- would amount to “We don’t see eye to eye on this, but I know from our other conversations and interactions that you are not, in fact, a soulless monster, but my friend” becomes “OMG U FASCIST I HATE YOUR STUPID FACE AND I HOPE YOU FALL DOWN A WELL!!!!!!!!”

So what’s changed? Am I off Facebook? [Girl, please- it’s open in the next tab.] I did- however- find a more realistic way of looking at it, and at the whole idea of social engagement.

My priest-remember him? the patient guy at the beginning of the story?- told me about something he read about that helped him not to become overwhelmed, hate everyone, and spend the rest of his life crying [paraphrasing there]. He told me about the Circle of Influence: areas we can actually change and influence vs. the Circle of Concern: the big, ever-present problems of the world.

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According to the 7 Habits of Highly Effective People, the most effective [and/or proactive] people focus the majority of their time on their Circle of Influence, and far less on their Circle of Concern. This not only made total sense to me and struck me as a really healthy way to be,  it helped me realize that social media, and media in general, distorts things such that our Circle of Concern is either presented as identical to our Circle of Influence or vastly more important when it comes to changing our circumstances, when it’s really the other way around.

“Imagine,” Father said, “what it would be like if you took that energy for those causes you cared about and put them into action in your community and in your day to day life.” I  could write a letter to the editor, have a conversation that promotes empathy and understanding of someone different than me, treat a friend who is struggling financially to a meal, recycle, look someone in the eye and tell them they matter. The wonderful paradox is: I can do almost nothing to solve the big problems of the world, but the “small” things I can do that would truly make a difference are in fact vast, endless, and ever-evolving.

What if I- what if we all- took that approach first and foremost? Would all social problems be eliminated? Probably not. Would action be taken consistently, and would things change? Definitely. And that seems like what all us are truly after.

Mother Teresa of Calcutta changed the way the world views poverty, service, and love. She transformed the lives of countless people with her work, and continues to do so with her teachings. Yet she did not use a computer, and rarely traveled outside of the area where she lived. Would we dare say she didn’t care?

Even contemplating shifting my focus from “great things” to “small things with great love” has been immensely freeing. To do so helps me see more clearly how much I am loved. I realize more clearly what I can do for others.

I believe that thinking and acting in our sphere of influence- doing small things for our friends, enemies, neighbors, communities, opponents and compatriots- deliberately and consistently with great love will shift our connection to humankind from virtual to reality.

***

What do you feel connects us to one another? What harms that connection? What helps it?

What small things have been done for you with great love?

What small thing can you commit to doing this week for someone that you love? For someone that you don’t always agree with?

A Letter to Amy Poehler’s Smart Girls

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Dear Amy and the Smart Girls:

I just visited your website where I read- with the same disappointment one might read the phrase “Sorry, we’re all out of pizza”- that Smart Girls has no contributor/intern/job openings at this time, but to check back later. I can assure you I will check back later, but in the meantime, I hope you will take a few minutes to read this letter due to your general awesomeness, your interest in story-sharing, and my bone-deep conviction that I am your long-awaited best friend. I have been trying to be more courageous lately, and this is borderline crazy, so I thought I’d go for it and see what happens.

I am a 29 year old woman (or Girl, to stick with the vernacular) from Nashville, TN. I have grown up here, and- apart from an internship for the Federal Government in DC and about 15 months of graduate school in Athens, GA- I have lived here all my life. Doing the best I could in school was a good decision; I was able to go to both undergrad and graduate school with several scholarships in tow, and to receive honors over the course of my education. Because I have always loved learning and put a great deal of pressure on myself to succeed, I started college at 17, finished my bachelor’s shortly before 21, and completed my Master’s within a few days of turning 23. [I realize that not enough people get an opportunity for an education, so I am profoundly grateful to have had it]. It is uncomfortable for me to write this part of the letter, because I was raised to be modest, which I kinda took to an extreme by never talking any of about my accomplishments with my friends. I am also leaving some stuff out because I am terrified that someone reading this will think I’m- gasp!- kinda braggy, or even worse: that I’m no fun at parties. Anyway, bear with me, I promise that not only do I have a point, it’s on it’s way. Also, I’m super fun at parties. Ask anyone.

My bachelor’s in Sociology [“Oh, wow. This world is kinda messed up for all these reasons that seem to be cemented in the social and economic fabric, and here are a bunch of depressing books and papers about just how bad it is.”] paved the way for my Master’s in Nonprofit Organizations [“Maybe it’s more like peanut butter than cement: it’s sticky and messy and gross when it gets on you, but malleable. We can change it, we will change it, as soon as we get enough grant money.”], and I have been working in the nonprofit field as a volunteer, intern board member or staff member, for about 10 years now.

But a traditional education and list of 9 to 5 jobs do not necessarily a Smart Girl make. We have all met plenty of people who have the appearances of success that are really just Mean Girls [“One time, she punched me in the face. It was awesome.”]. And of course there are plenty of Smart Girls who are so because they have found joy, success, and contentment and human connection by their own unique and innovative means. There is so much room in this world for Smart Girls, and so many Smart Girls looking for voices. I know this not just because I have met those girls, but because I am one.

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I was born with Cerebral Palsy, a disability with onset at birth that affects everyone who has it in ways unique to them. Most commonly, mobility, motor skills and speech are affected first, with other secondary effects. However, just like with any other experience of disability, the challenges faced when living out that experience are not merely physical. Beyond my own story, I know that many people experience intellectual disability, and many have a disability that is not visible but still plays a great part in the challenges they face [such as Autism Spectrum Disorders or Traumatic Brain Injuries, among many]. And while a life with a disability is certainly just as full of joy, blessing, talent and strength as anyone else’s, there are also many other factors at play that too often silence the voices of so many Smart People out there. People with disabilities face far more hurdles to employment, education, and acceptance in community life than their typically developing peers. People with disabilities are almost entirely absent from popular culture and media, with the few exceptions still placing all the focus on their “otherness”. And the rate of depression, anxiety, and similar emotional challenges amongst people with disabilities is extremely high.

Here I’ve spent a decade working for people with disabilities, with many of my peers working twice as long as I have, and it is still remarkable to people that I have an education, a job and a partner. While I am not in any way downplaying the very real work myself and so many people I know have done to reach such milestones, I dream for a world where stories like mine are no longer the exception, but the rule. And I am at a point in my life where I am realizing that sometimes in order to do big work, you have to think big. You have to try something new; you have to leap and see where you might land.

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Why Smart Girls, you ask? Why not one of those spiffy nonprofits I alluded to like a hundred paragraphs ago? Well, because the Smart Girls are all about acceptance, celebration, and inclusion. They’re all about having a voice that gets heard, not by shaming and negativity, but by affirming, by celebrating and building connections. Yes, nonprofits serving people with disabilities crusade for all these things, but the whole point of doing so is for our story to be heard, and not just by people who already know it. To make lasting change, I have to tell the story of disability experience in a way that causes someone to snap out of their comfort and familiarity zones and realize, “This is not just a cute, inspirational article. This is my story. These are my neighbors and friends. This is my family member or partner.”

Working in the disability services field the power of connection is apparent. We work hard to cultivate a spirit of empathy, and an attitude of saying “you can do anything you set your mind to, and I’m here if you need any help or support in making it happen”. I was very fortunate to have a community, a support system, a means of finding my voice. But in this age of information overload and lack of true connection, I have often wondered: are there other people out there needing that community, that sense of voice? I believe the answer is yes, and I believe that need will always be present. I also believe that Smart Girls can be one of those voices

Recently, I re-entered the job market. My husband suggested I contact you guys (because he’s smart, too), and I considered that suggestion a huge vote of confidence. Of course I realize sending this letter provides no guarantees of a response, or of any action on your part. I am just reaching out in hopes that perhaps somewhere in my story, you will see an opportunity, or that when one arises, you will remember this letter. If you want to think of ways to make your curriculum more accessible to people with disabilities, if you need help finding great stories of people with disabilities to tell, if you ever want to make sure that eliminating ableism is a clear part of your values, or if you just want to eat some nachos, you know where to find me.

Thank you for all you do, you beautiful unicorns of the sea.
Beth H. Thielman

Aspiring Smart Girl

Nashville, TN

i have a disability (like it’s my JOB).

Wow-wow-wow kiddos, what a year thus far. You know as well as I do that I am all flattery and empty promises when I talk of blogging regularly. And with a new job, and a wedding to my Favorite Human to plan for later this year, I have to admit: blogging for all you fine people has taken a backseat. I am up to my eyeballs in thoughts, feelings, financial obligations, and to-dos. So while my Social Network [and Skype, of course], have been a-buzz with activity, the blog has been silent. Recently, though, my friend Mary Evelyn wrote about her son [probably my second favorite human, let’s be honest]. She wrote about Sim’s disability: about why it does define him, and how she’s okay with that.

Along with my usual being moved at her kind, honest self-expression and love, I thought:

Wait a second. I have a disability. Does mine define me? And if it does, am I cool with that?

I started to really think about my life, and how my Cerebral Palsy [and the brain damage and physical limitations associated with it] have affected me:

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Photo by Juliana Finley

It dictates how I carry out every single daily activity: getting in and out of bed, getting ready, commute/traveling, the layout and use of my office, meal prep and cleanup, social time and entertainment [I’d love to come along! but are you sure it’s accessible?]

It has influenced my social circles: From infancy forward, having “disability” in common has helped me forge a strong, loyal subgroup within my peers.

It has ended up setting my path for my career, and my education. My work has been entirely disability-community focused for the whole of my adult life, and it is precisely because of my interest in those not-for-profits that I pursued a Master’s, I wanted to be able to work more effectively for the disability community.

It affects the way I view the body in general: no illusions about a perfect one here

It has attuned me to social issues. Many people with disabilities are living at low income and are marginalized/discriminated against, made to feel distant from their otherwise peers because of an arbitrary characteristic. Because of experiencing this first, second, and third-hand, I can’t stand to see any subgroup marginalized or mistreated, no matter how different from me they are.

It has affected my spirituality and worldview: I have flatly turned down a barrage of faith-healers, insisting that there is more to faith and healing than they are offering. And it has made me think deeply about how I see myself in my subconscious [helping me grapple with the uncertainties of self-perception and strange dreams]

"Autorretrato con el Retrato Dr Farill" (Self-Portrait with the Portrait of Dr Farill)

Frida Kahlo

It’s true: my disability has determined and dictated almost all of my life decisions: what I do and how I do it, who I know, and even the apartment where I live [ground floor, baby!] Yet, that doesn’t satisfy me. My disability might have  a lot to do with how someone would describe me, but to define me, you need to take into account much more. What about Orthodoxy? Or Beatle-fandom? What about social and political beliefs? What about my interests outside of disability advocacy?

I was still stumped: does my disability define me or doesn’t it? If it doesn’t, what does? What am I going to tell Mary Evelyn?! WHO AM I??

Then I thought about how having a disability often turns you into a spokesperson. Like it or not, to survive and thrive as a person with a disability or a loved one of that person, you become an advocate. You learn to speak up for your rights, your needs, and your wants in a world that is sometimes unsure how to communicate or interact with you. For me, having a disability is an [almost] 24-hour-a-day job. I represent disability to some, I speak for it to others, and I am expected to be an expert at it. Living with a disability and making the best of it is part of my purpose; it is literally my life’s work.

While discussing this with John the other night, I smiled and said: if my disability is my job, you must be my time off. You may be an advocate: for yourself, for your child, for a cause, for the civil rights of yourself or a friend. That’s great. Keep living your life passionately and with dedication. But keep balance, breathe deeply. Take your advocate hat off every now and then, just long enough to recharge. And remember to have people near you who can be your advocate, your cheerleader; with whom you can be fully yourself.

Yes, I have a disability. Sometimes it feels like my vocation, mostly like my occupation. Disability describes me; how I choose to face it, and any other challenge or victory in my life, defines me.

What are some of the things that define you [and how do you feel about being defined by them]?

Statue of Limitations

I haven’t written in a while. Life has been getting in the way of my art these days. Work, bills, stress, housekeeping. All necessary, and for all I am thankful as a means to realizing the more independent life I have so long fought for. . . But boy-oh-boy has all this maturity made me an unreliable, frustrated artist.

Since when did Leonard Cohen ever write about forgetting to check his mail? Is there a song on Pet Sounds about paying your light bill? I don’t think so.Clearly I have been lacking in perspective. In my head, my life and the things in it have been nothing to write home [or the Internet] about.

Until I came across an article featuring an interview with Anna Eleanor Roosevelt, the granddaughter of the coolest [and most differently-abled] POTUS ever: FDR. In it, she discusses the FDR Memorial, and how she, some members of her family, and [self-] advocates within the disability community, fought [successfully] to have a statue that features FDR in a wheelchair added to the memorial. Since its addition, it remains the most photographed spot on the site. 

 

Although FDR did have misgivings about making his disability a public matter, the fact remains that all of his major life accomplishments, including all 4 of his terms as President, were realized after his disability became a prominent part of his life.

The fact that a member of his family recognizes and celebrates this is to be commended. While life with a disability isn’t always a picnic, disabilities should never be ignored. 

Recently, I was having dinner with friends when one of them said “We don’t really see your disability, we just see you”. I know what she meant: it’s not her primary focus. It isn’t the first thing she thinks of when she sees me. It’s not like she introduces me as “my friend Beth in the wheelchair”, or has me stored in her phone as “Wheelchair Beth”. All that I can appreciate.

But to see my disability should be to acknowledge its existence and to affirm that all parts of me make me who I am. I do not exist in a vaccum apart from my limitations, I exist alongside them. There is nothing about my differences that I am not constantly experiencing with the other parts of myself.

 We don’t live in Avatar [which you know I’m thankful for]. Life gets better when we make the most of it and keep moving forward, not when we trade up for a pair of Sea Legs. The more we engage in dialogue about disability and difference, the more awareness we will have of one another. The more awareness, the more empathy. And the more empathy, the more strength and equity as a society.

So, if there is ever a monument to me, put my clunky gold-silver-or-bronze self in a wheelchair. See me as I am.

And make sure I don’t look creepy.

entitlement

A number of people have noticed the title of this blog, which is of course based on signs like this one. i guess i'm toast.

Signs reading “In Case of Fire, [Do Not Use Elevator], Use Stairs”are placed near the button panel for every elevator, often at a spot where someone with a wheelchair would be seeing it at eye level. I was asked this morning by one of my friends what a person in a wheelchair is supposed to do in a fire-all-over-the-place kind of situation.

Not wanting to be ill-informed, I researched it on the Internet for about 4 minutes.

  1. As I suspected, using an elevator in a fire is kind of like asking the fire to give you a big hug. I wouldn’t recommend this.
  2. What you are supposed to do- in a respecting regulations kind of way- is wait in an “area of refuge” which is supposed to be a fire-safe area of the building: these include operating rooms, areas in stairwells, and control rooms in nuclear power stations, to name a few.
  3. Another option, and the one I prefer, is the ask-a-strapping-young-someone-to-pick-you-up-and-get-you-the-heck-out-of-there approach. Thats the technical name for it, anyway.
  • I first became acquainted with this method in high school. Our building had 4 stories, and my principal thought it was pretty bogus to leave me at the stairwell with my fingers crossed. So in each of my classes, I had a little team of people that would help get me and my chair out of the building in the event of a buncha, buncha flames wanting to engulf me.

Yes, yes, I know, you’re saying to yourself, but where does the title of your blog come from?

As many -if not all- of you know, I use a wheelchair because of cerebral palsy. Honestly, I would probably have to Wikipedia my own disability to explain it to your satisfaction. But, off the cuff, I can tell you that I have brain damage as a result of lack of oxygen to my brain, and that this could have occured at a variety of points before, after, or during the birth process.

Life with a disability is always a challenge- and always a lesson in irony, humor, patience, and civil disobedience. But that isn’t exclusive to my life or my circumstances. I know all of us face challenges, and all of us have to choose to laugh to keep from crying on a regular basis. And every single one of us, for one reason or another, has really wanted to stick it to the man.

That’s why In Case of Fire, Use Stairs seemed like the perfect title for my attempt to reach the world through chronicling my life and my perspective, because life is what it is. Sometimes you wait. Sometimes you’re trying to survive and not get burned. Sometimes you’re helping someone else take a breath. Sometimes you leap and hit all the bumps on the way down. But you have to keep going to survive- and keep a smile on your face while you do it- even if your tongue is placed firmly in cheek while you do so.

I have written almost all my life, and have always wanted to reach others through writing in a way that could inspire them and stir them, certainly- but I would be remiss if I didn’t also lace everything I created with humor. It’s dark and troubling to picture me at the stairwell, crossing my heart and waiting for fireman Joe. But it makes me smile. Because there are so many moments in my life where it feels like the walls are closing in- or burning down- around me. But I’ve always made it out. So, when things heat up for you, I encourage you to follow these three time-honored steps: Stop. Drop. And Rock n’ Roll.