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?

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.

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

Love, Needs, Giving: A Partner’s Perspective on Disability [Guest Post by John Thielman]

Happy spring! Today the blog breaks its unintentional (but by no means surprising by now) silence with a special treat. Yesterday marks 3 years since one online exchange began a friendship, which grew into a relationship, and is on its way to becoming a marriage. Since May is the month John and I met, I am honored and proud to share his guest blog with you, which offers his perspective as the partner of someone with a disability. I am sure his kindness and honesty will encourage all of you, as it does me every day.  Enjoy!

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K Summers Photography, 2014

Beth often shares stories with me of her odd encounters with well-meaning, but socially awkward, strangers. One of the questions she gets most often is: “So is your fiancé in a wheelchair, too?”

It’s tempting to try to laugh that question off, but the more I think about its implications, the less I like it.  Nobody asks me if my fiancé needs glasses too, or if she is also Caucasian, or is also going grey at the temples.  Everyone seems to recognize that a woman wouldn’t have to share my bad eyesight (or any other arbitrary, superficial characteristic) to be interested in marrying me, but for some reason it’s very common to assume that only a man who also has a disability would be interested in a woman with one. It’s as if people believe “typical” cannot love “different”. And this assertion that is not only false, but painful.

So, how does a relationship work when one of the participants has a disability?  Truth to tell, I don’t know how a relationship works when neither does (I was in a relationship once before, with someone without a disability, but I can’t say the relationship actually worked).  Ours is like any other relationship: we talk to one another, we listen, we try to help.

As far as I can tell, everybody needs help with something in life.  Some people are bad at doing their taxes, some are late everywhere they go, many have insecurities and some have legs that don’t work properly.  So just as Beth doesn’t think anything of helping me with my insecurities and the challenges I face as a student in a foreign country, I think absolutely nothing of helping her get up and down stairs, preparing a meal for us to share, or helping her around the house.

In fact, it is this act of helping that brings us closer together.  In order to allow her to help me, I have to make myself vulnerable to her emotionally, which is never easy (well, by now it’s easier because we’ve been doing it for so long), and in order to allow me to help her, she has to be very vulnerable to me physically.  It all requires a lot of trust, but our trust in one another is always rewarded.

Honestly though, it is the distance between us (not her disability) that has always been the biggest problem to overcome.  We have never lived in the same city, and never less than 800 miles apart.  Now it’s more like 4,600.  But we talk every day on skype, often for hours, sometimes more than once. [Since starting our relationship in September 2012, we have only gone 2 days without Skyping!]  We’ve been told that we talk more to one another than do some couples who live together.  This is no surprise, since we can’t do much more than exchange words, so we exchange lots and lots of them, and we weigh them carefully.

So, distance has become our teacher, helping us learn to communicate honestly and lovingly with one another.  And because being apart forces us to find a silver lining, each of us strives to discern the best and most loving interpretation of the other’s words.  When we can’t find that right away, we push through any negative feelings, and ask for clarification.  We do our best to understand each other’s needs and to help fulfill those needs.   And it turns out not to matter so much what [or even whose] those specific needs are; the remedy is still the same. We speak, we listen, we understand, we give and take, we help each other. We love each other. That’s really all there is to it.

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Originally from Menomonie, Wisconsin, John is earning his Master’s Degree in Historical Linguistics from the Humboldt University in Berlin, and holds a B.A. in Classics from Gustavus Adolphus College. He enjoys tailoring, cooking, and all things Tolkien. His favorite pastimes are reading, sipping fine whiskey, and shooting the breeze with his Intended. 

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]?

It Takes a Special Person [Guest Post by Mary Evelyn Smith]

The amazing Mary Evelyn Smith is a dear friend and fellow blogger over at What Do You Do, Dear?, where she writes-with plenty of candor, humor, and sass- about the joys and challenges of being a teacher, a wife, and a mom. We share a lot in common: our faith, many of our perspectives on life and people, and a devout appreciation for Arrested Development.  

Her family is one of my favorites, and her son, the Sim-Monster, is a sparkly fireball of Awesome.

You can read the blog here, like her on Facebook here, and Tweet her here.

It’s an honor to have her grace my corner of the Blogoverse! 

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In 2012 when my son was born with spina bifida, a birth defect of the spine, I joined the ranks of millions of people worldwide who love someone with a disability.  I’ve learned a lot in the year since—how to find the best wheelchair accessible parks, how to schedule multiple therapists, how to be a mom.  But more than that, I learned that I am “a special kind of person.”  At least that’s what people told me.

Why?  Because it takes a special kind of person to raise a child like my son.

I’ll be honest and say that at first, I really liked being a special kind of person.  Who wouldn’t?  It was nice.  It meant I was doing something good, something important and noble.  I am, after all, raising a child who has a disability.

But after a few months it didn’t sit so well anymore.  Being called a “special kind of person” began to make me uncomfortable.  And then I saw a photo on Facebook that made me realize why.  It was a picture of a teenage girl dressed for prom and standing beside her date—a boy with Down Syndrome.  The picture was charming, but it’s the comments that got to me:

“Honorable move, looks like she made his day!”

Someone at my school did the same this year. It made me proud of her because she’s absolutely beautiful and could’ve had anyone she wanted.”

 “That is very sweet of her…”

Turns out, she was a special kind of person just like me.  But it felt hurtful somehow.  I started wondering, “How would I feel if the boy in this photo was my son?”   Sixteen years from now, when my son goes to prom, will people applaud his date? Will they see her as a martyr? As a saint?

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Just what are we saying about people with disabilities when we glorify those who love and care for them?

Think of it this way:  I am married, I have a mother and father who love me, I am surrounded by friends but what if, time and again, I overheard snippets of conversations—words that praised them for the love and care they’ve given me?  Imagine whispers to my mother: “It takes a special kind of person to raise a kid like that.”  Or to my husband “You are such an inspiration— I don’t know if I could be with someone like her.”  These comments would say so much about my worth— my value.

Believe me, I am not diminishing my work as a mother.  I am not ignoring the extra time and energy it takes to carry a wheelchair up a flight of stairs.  I am not pretending that my son is just like everyone else.  But when we glorify his friends, or his mother, or his one-day prom date, we imply that he is less-than. We imply that those with disabilities are not equally lovable—that it takes someone “special” to muster up this kind of affection.  It seems we reveal our innermost bias—at least I think I did.

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The thing is, all love should be praised and all sacrifice too.  Loving someone is hard work—whether they’re a football player, a musician, or a wheelchair tennis star.  So call me hard working or call me a wonderful mother.  But if you call me a special kind of person I’ll probably nod and smile because I know a secret: if you knew my son, you’d love him too.

So, I guess, you’re a special kind of person—just like me.

Dear Simeon: Enjoy your new wheels! [a guest post for What Do You Do, Dear?]

This is a guest post for my friend Mary Evelyn’s amazing blog, What Do You Do, Dear?

Her son, one of my favorite humans, just got his first wheelchair. I wanted to write Sim a letter about what being in a wheelchair is like, so he and his mom can read it together later on when he starts to get older and ask questions.

Enjoy! And read the rest of her blog instantly.

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Hi, Simeon!

I’m Beth. I’m friends with your Mom and Dad. I go to Church with your Uncle Joel and Aunt Sarah. I made you a video where I sang Happy Birthday to you when you turned one. I bet you could tell that I’m very, very silly. Most people figure it out right away.

Your Mom wrote a blog post about you getting your first wheelchair the other day. I watched that video she made, and it looks like you already know just what to do. Awesome! 

It is fun to use your chair to learn ways to do things your friends do that work for you. You want to zoom around the playground? You can. You want to twirl around in a circle for the heck of it? You can. If there’s something you want to do, there’s a way to figure out how you can do it. 

As a bigger kid who uses a wheelchair, too, I can tell you: having a wheelchair can be great. It helps you get around more easily by yourself. You can keep up better with your friends who are walking, running, or playing with you; especially if they are pushing your chair during playtime. You will meet a lot of great friends to have fun with. I have no doubt. 

But there are going to be some people you meet that won’t understand wheelchairs or what it is like to use one. They won’t understand that you have your own way of doing things that works for you. They might say that there is something wrong with you, that you’re sick, or that you can’t do something they can do. They might tease you. They might laugh at you. They might look at you funny. They might feel sorry for you. They might call you names. They will make choices that hurt your feelings. 

When I meet people who act like this, I am angry. I’m sad. If they just got to know me a little, they wouldn’t choose to say and do things like that! It’s okay to be upset when people hurt your feelings. Just do your best to remember the good friends and helpers all around you who love you very much. 

You may meet some other friends with wheelchairs, some who use crutches or a walker, some who have service dogs to help them with seeing or hearing or reaching things. Some of your friends might not have wheelchairs or walkers or crutches or service dogs, but there are things they will need help with, too.

We can all help each other, we can all be friends with each other. We can all learn from each other. There are two things we should always remember to say, “Thanks for helping me!” and “What can I do to help you?” Helping each other makes us all better friends in the long run. 

Being in a wheelchair does make us different from a lot of our friends. Feeling like you’re different can be scary. But it is nothing to be scared of or sad about. God makes each one of us special. There is only one me, there is only one you. All of our friends are special, too. We are all different from one another. And that’s just it. Because no two of us are alike, everyone is fabulous, everyone is wonderful; everyone is fantastic. 

So, keep your chin up, Sim. Keep on rolling. Keep on being fabulous, fantastic you, no matter what. 

Zoom zoom. 

With Lots of Love, 
Your friend, 
Beth