Visible Differences and the #ToyLikeMe Movement


A few years ago, I was part of a group in charge of choosing teddy bears to sell at the Moebius Syndrome Conferences. We found that it was actually really, really difficult to find a non-smiling teddy bear! Finally we found a neutral-mouthed teddy bear that we chose. 

Makies, a British company, is among a group of advocates and manufacturers embracing the #toylikeme movement – offering customizable 3D printed dolls for sale. I’m actually not really a fan of the heads they use (those eyes are kind of creepy!) but I love the concept.

I probably would have loved more dolls with differences like mine growing up – I was always playing hospital with my Playmobils and loved it when my American Girl dolls came back from the “hospital” (aka with a new head after the hair was beyond repair!) wearing hospital gowns! I don’t think I was necessarily harmed by not having toys that looked like me, but would have loved to have this available to me. 

I like that companies are embracing both diversity and customization at the same time – with the advent of technology like 3D printers I really see things like dolls with more involved facial differences being available very soon.

I hope next time I’m seeking a non-smiling teddy bear the toy landscape will be kinder to children with visible differences.

Childhood “Favorites”: Medical Edition

 My parents are cleaning out the attic of their house, and I got an e-mail with this blast-from-the past: Mister Rogers medical books!


I still remember these books well. And that’s kind of sad. I think I took “working through past medical procedures” a bit too intently… we also found my favorite doctor’s kit. I donated a bunch of toys and dolls and books, but these I’m keeping.

I’m keeping them as much for what they represent than for anything else. These books represent my experiences growing up with doctors and hospitals and operations and casts and appointments followed by yet more appointments. They represent me trying to make sense of that reality, and the resources that were available to me do that. They represent the efforts of those around me to prepare and educate me about these experiences (apparently not only did I go on a “surgery tour” at the age of three, I actually asked questions of whoever was leading it. Precocious much?)

Certainly education about the impact of early childhood medical intervention has improved, and I’m sure there are more sophisticated preparation materials available to children and their parents now – but finding these books makes me grateful that at least something was available during my childhood.

This series was certainly well-read and well-loved.


In case you ever need to know, the sure-fire way to seriously piss me off is to tell me that I am suffering from Moebius syndrome.

The people of Nepal are suffering. People and families who are going hungry or experiencing great trauma are suffering.

I am living, not suffering.

Yeah, it sounds like I’m just being really picky… but for me, and for many others living with chronic conditions of all kinds, that distinction defines so much. It defines how you approach me, how you approach the fact that I happen to have a rare medical condition.

If (the general) you approach my having Moebius syndrome as suffering, I immediately feel on guard. On guard for what, I’m not sure – pity? condescenting-ness? mid-understandings?

Perhaps I need to work on seeing the other side of things and think in terms of educational opportunities and different life experiences and such… but I don’t always have the energy for that.

I’m too busy living with Moebius syndrome. 


Having grace

simple elegance or refinement of movement.

(in Christian belief) the free and unmerited favor of God, as manifested in the salvation of sinners and the bestowal of blessings.



do honor or credit to (someone or something) by one’s presence.

Thinking about grace today – not only about a girl named Grace who passed away far to soon, but about having and behaving with grace in my everyday life.

I want to say that I behave with grace in my life. I aspire to that. I try. But sometimes it is difficult. Emotions get in the way, passions collide. Self-preservation takes over. Grace is forgotten in the chaos of everyday life.

This shouldn’t be the case, and I am determined to find the grace I know is everywhere – savoring the happy face of my dog at the end of our walk, spending time with my family, looking at awe at the one thousand pound horse who lets me mount him. The magic of witnessing passionate performers giving their performance of a lifetime.

These are my moments of grace. Everyone’s moments are different, but they are everywhere. My mission is to pay attention to and absorb these moments, and to channel that energy in the moments where I feel lost or disillusioned. I will try. It will happen sometimes and undoubtedly will fail at others. But trying is truly living with grace.

What if there aren’t “Ten little fingers and ten little toes”?

When I was choosing my books for storytime last week at the library (due to some staffing changes, I am now doing the occasional storytime! Slightly petrifying but satisfying when it goes well and toddlers and caregivers leave happy!) I found a classic on the shelves: The Little Fingers and Ten Little Toes by Mem Fox and Helen Oxenbury.

The refrain of the book, told in rhyme, is

And both of these babies, as everyone knows,
had ten little fingers/and ten little toes.”

Upon re-reading this time, I was struck with the conundrum of… what in the world would I do if a child with a hand or foot animality came into this storytime? What rules do you follow when dealing with truly exceptional uncommon differences?

I do not have the hand anomalities sometimes associated with Moebius syndrome (although I do have rather crooked index fingers!), and clubfoot and residual issues from that, but I kind of thought about this the way I think about the colloquial use of smiling in our lexicon. If I got truly offended anytime something – a song, an advertisement, a common phrase – mentions smiling, I would truly spend my life offended.

And honestly, there aren’t statistically that many of us who cannot smile (or have “unique” smiles) that it makes sense that it doesn’t figure into the scope of thought. While it’s great to point it out, and helps awareness and understanding, I have also learned to take a deep breath and look holistically at these things. But children usually don’t have that perspective. I know I spent a few years very offended when people mentioned smiling, no matter how innocuous. The last thing you want to do is offend someone from a simple book.

So this takes us back to the seemingly innocuous children’s rhyme… What in the world do you do? “And both of these babies, as everyone knows, had ten little fingers/and ten little toes… except for the ones with hand and foot anomalities, who may not!?” I didn’t say that this time, but it made me pine for some great very basic books about children with disabilities. It’s tricky to find disability literature for children that isn’t too saccharine or implausible – the Schneider Family Book Awards are wonderful, but they tend to award picture books for older readers (as well as middle grades and young adult) I have a ton of resources for middle grades and even late elementary, but a storytime appropriate book about those babies who may not have ten little fingers and ten little toes would be magnificent.

Young children are so receptive to differences and are sponges… I would love to harness this openness for awareness of differences both big and small. So that is my resolve in a few weeks when I next do storytime, to search for good books about differences that will teach that even though babies might not all have ten little fingers and ten little toes, they are all equally loved and special.

Pondering Grumpy Cat’s Appeal & Facial Paralysis

Grumpy Cat Unveils 2014 Macy’s Holiday Windows | Union Square

So Grumpy Cat helped open the season for the Macy’s San Francisco SPCA windows yesterday – one of my favorite holiday traditions ever, I remember when they used to be in the old Gump’s – and of course got all kind of attention because, well, he’s Grumpy Cat.

And I admit, he amuses me. His nonchalance is endearing. But then I wonder… is being amused by this slightly morose-looking feline the same thing as laughing at someone for the way they look? Especially for me, the idea of being laughed at because of his dour expression rubs me the wrong way. Granted the cat has no perceptions of being teased, but what kind of precedent are we setting.

But then I look at the persona his “people” have crafted… and it’s really not that different from what any of us who look different have done, using what we have to the best of our abilities and compensating for our weaknesses. He is catty (no pun intended), hilarious, and scathing… but all in the spirit of fun. He demands to be looked at and respected, which I think is a good lesson for anyone in taking charge.

I guess I end up rather equivocal about Grumpy Cat, but admit to finding his marketing strategy hilarious and – in a bizarre way – inspirational.

International Assistance Dog Week

This week marks International Assistance Dog Week. I think it’s a great idea to make us think more broadly, and more compassionately, about the entire assistance dog community. I recently had a sort-of encounter that made me reconsider this.

Normally seeing other working dog teams out in public is nice. There is the moment of acknowledgement, the admiring of both dogs behaving themselves, and then going on our own separate ways. Often this is done without so much as a word between the two handlers, just a communal acknowledgement. (Unless it’s a fellow CCI handler/raiser/volunteer, then you end up discussing breeding and raising and who trained the dog in Advanced Training!).

Last week, though, I had my first “bad” encounter with another service dog handler, and I was honestly a bit shocked. I was at my local independent grocery store, checking out the prepared food. Cassius was standing between me and the counter. Guide dog and handler come barreling down the aisle behind me (aka, before I had time to react!), dog sticks its nose in Cassius’ face on the way past. Cassius rocked a pretty darn good “leave it”, guide dog got a stern forward. All good, right?

Apparently not. As I was checking out, I heard the handler asking the cashier if they knew there was another service dog (in a blue vest. Hello, if you gave enough vision to see the blue vest, how about seeing the big honking yellow dog in said blue vest?!) in the store… “And if they knew if it was a real service dog?” Sigh. Thankfully I buy a lot from said grocery store and they know I’m almost always there with Cassius, so they stood up for me… But it was rather bizarre.

So what can be learned from this? Education! Education for other service dog handlers (yes, there are indeed other types of service dogs besides the kind that you have!). Education for the public about fake service dogs so that the default question isn’t “are they a faker?” And education for businesses so more can make good judgements like this one did.

And while we’re at it, how about some education for your dog so it doesn’t sniff things on the way past. 🙂

24th Anniversary of the Americans with Disabilities Act

The ADA was signed 24 years ago today. While I was definitely too young to remember life pre-ADA for people with disabilities, I know I have benefited from growing up in a post- ADA and post- IDEA society. It’s not perfect for people with disabilities, of course, there are still huge barriers and challenges – but progress has been made and is only continuing.

I loved the message of this graphic – it’s so true! Disability rights are indeed civil rights.

Change how you see, See how you change

Change how you see, See how you change.

Rick Guidotti uses this as his overarching theme for the Positive Exposure project, and the 11th Moebius Syndrome Conference this past weekend reaffirmed the power of this statement for me. As much as his project is about changing how people from outside of the disability community view people with different medical conditions, the perhaps surprising power of the project is really empowering people from within.

I love seeing children and adults, many of whom have faced teasing or worse at one time because of how they look, light up before his lens. I love how he, to use his own words, treats every subject he photographs the same way he treated supermodels. Empowerment is perhaps an overused concept, but witnessing and being part of his creative genius is truly empowering.

I think that empowerment is why I come back every 2 years to Moebius Syndrome Conferences. The community, my friends. The medical information, while always fascinating, is secondary. It’s a bit disarming, in the best way possible, every time… to suddenly be surrounded by people like me – to have it re-normalized, if only for four days every two years in July. It takes you aback, in a way.

But I love seeing the groups of pre-teens roaming the conference hotel in search of adventure, the younger children making friends and meeting children who look like them for the first time, and the incredible community of adults with a wealth of experience and knowledge. I even love the talent show… even if we did witness every possible rendition of “Let It Go” (some even complete with costume!).

It’s about the exposure to different people going through some of the same things I am, and learning from them. It’s about changing how I think about things and how I approach life with Moebius syndrome. It’s about seeing myself evolve over time as a person and as an advocate. It’s about introspection, and about socializing over drinks with our ears still ringing from talent show performances. It’s about history and shared experienced, and it’s about the future.

I am excited about what’s to come after every Conference, and this one was no exception! Looking forward to the FRAME video project explaining Moebius syndrome, applying to be a Pearls Project Ambassador, and about all the exciting research to come!

And very excited about having the 2016 Conference in Los Angeles… can’t wait to go to Disneyland again! And the beach!

Wordless Wednesday: July is National Cleft & Craniofacial Awareness & Prevention Month


So for some reason I’m not entirely sure of… we get 2 months for craniofacial awareness. Yay? Anyway, this is July’s logo and information! Check it out, and if you don’t know much about craniofacial conditions check the supporting organizations and learn about the diverse conditions, some you’ve heard of (cleft lip, for example) and many you have not (Moebius syndrome, other conditions such as Apert syndrome). Spreading the word about awareness of craniofacial conditions is needed, as these are often misunderstood and not really covered by the broader disability community.