I hate the fact that I censor myself. I hate the fact that I see and hear language surrounding disability and Moebius syndrome that makes me cringe, yet am not confident or assertive enough to insert my position into the dialogue. Who am I to say that someone else’s experiences and conceptualization of their condition or their child’s condition are “wrong” – of course they are not, the theoretical arguments I’ve read make sense to me intellectually and for me, emotionally, but they do not change individual experiences. So I find myself shirking away from saying anything, from intruding into a community in which I do not quite know my place or my feelings… yet. Maybe someday? Maybe not. I’m okay with the uncertainty for now. So I skirt around the outer perimeters, sometimes venturing in… sometimes sprinting away.
It’s always nice when you like doing something and you realize it’s good for you at the same time. I’m not a exercise fanatic or anything, but I do enjoy the endorphin rush I guess you get when your body has been worked correctly and it just makes you (or me at least) feel better. Now for me with Moebius, this isn’t easy. Many people seem to be not as affected as I am and do all kinds of sports… but I can’t run (at all! between the leg pain, coordination and lung issues… not good!) and anything involving standing up for long periods of time is sometimes problematic.
But I was lucky enough to discover several athletic activities that I can do – yoga, pilates, swimming, riding horses…- and try to do them whenever I can. It’s great to feel like you’re doing something good for yourself that is also really enjoyable (well, mostly enjoyable! or at least where the enjoyment outweighs the pain). And, yes, it is “therapy” of sorts… and sure a lot more interesting than any physical therapy room I’ve ever seen!
This week marked the 21st anniversary of the passing of the Americans with Disabilities Act. It’s amazing if I think about it how much we take for granted – access to buildings and services, transition planning, improved school accommodations… – was not available everywhere before this act was passed.
I’ve heard a few people with Moebius say that they don’t feel as if they are part of the disability community, but I feel the opposite. I was lucky to attend my state’s Youth Leadership Forum for students with disabilities in high school, where I learned about disability history and met hundreds of other students with disabilities. We often exist in a vacuum – most times, we are the only person with a disability or one of very few in an organization or activity. I found that becoming involved with the disability community gave me much-needed perspective when I faced difficulties due to having been born with Moebius syndrome.
In light of this, I also think it is important to recognize where we fit in with the larger disability community and follow developments, legislation and advocacy related to both craniofacial conditions and other rare disorders. It makes me feel as if I am doing all I can to remain educated and involved. And to me, that is the objective of the ADA: to allow people with disabilities to be active, involved community members.
Programs about Moebius and other rare conditions are so, so important because that is the way many people without direct involvement with someone who happens to have a condition (which, after all, is very rare) get some exposure. Although it doesn’t completely help with awareness and understanding, it does create a common knowledge base to increase awareness.
The BBC2 and Landmark Films produced a series called Children’s Craniofacial Surgery, profiling the work of the Oxford Craniofacial Unit and focusing on many different conditions including Moebius syndrome and Apert syndrome — as well as many more even rarer conditions.
Wonderful to see how these doctors and families are presented. After watching the entire series, I have so much respect for that entire team and especially the doctors who engage in this specialty.
One thing that one of the physicians said that really resonated for me when I watched it, when speaking about a pre-teen boy with Pfeiffer’s syndrome, was that while he is a wonderful and unique child — his personality and sense of self were shaped by his difficult early life. Is that a good thing? Probably not, but it is what it is and not something you can change or wonder too much about…
Children’s Craniofacial Surgery: http://www.bbc.co.uk/programmes/b01129cw
Breaking with my format to tout a few organizations that do amazing work!
“The Professional Association of Therapeutic Horsemanship International (PATH Intl.) changes and enriches lives by promoting excellence in equine-assisted activities and therapies.”
This organization used to be NARHA (North American Riding for the Handicapped Association) and they do incredible work for many people. Many people with Moebius never need therapeutic riding and could start, like I did, with a “normal” lesson program and caring instructors who are willing to adapt and work with physical issues. For children or adults who are more involved and may need adaptive equipment or lessons, I highly recommend looking up the list of accredited centers near you and checking it out! Many offer affordable lessons and horse camps for people of all abilities. If you’re looking for a regular lesson program who would be good for a person with unique challenges, I’d also advise contacting a local program – they are experienced in finding “feeder” programs for their more advanced kids and should have some recommendations. That’s how I found my current instructor and I couldn’t be happier!
Canine Companions for Independence
“Canine Companions for Independence (CCI) is a non-profit organization that enhances the lives of people with disabilities by providing highly trained assistance dogs and ongoing support to ensure quality partnerships.”
CCI does amazing work – providing service and hearing dogs for adults, facility dogs for programs and skilled companion dogs for parents of children with disabilities. I’m in the process of getting evaluated for one to help with the chronic pain issues I have from Moebius-related issues and I’m so excited! They have programs all over the country, and are very focused on bringing together a team who works well together and can progress and maintain the training. I can’t wait to get on the waiting list… it can take up to two years from the time you’re on the waiting list until you get a training date.
Some images stick with you. I was just thinking about this girl a few of us saw up on a few adoption sites a few years ago, who was born with Moebius syndrome. I can only hope she’s found a caring family, since she is no longer listed as available, and that family is knowledgeable about Moebius and involved in getting her the services and attention she needs to thrive. It’s amazing to think how much our lives are pre-determined by our circumstances… and frightening to imagine what the lives of people with Moebius were like many years ago before surgeries for strabismus and club foot, speech therapies, public schools being required to educate all children… every once in a while I have to step back and be thankful for when and where I was born…
So… back when I was much, much younger and didn’t have contact with anyone else who had Moebius syndrome, I used books as a way to understand growing up with a disability. My parents sought out literature involving people with disabilities and I read them over and over and over… I think trying to contextualize them within my own experiences. Now things are very different, but literature about disabilities is just as worthwhile I think. Here are some that I like, along with a few movies.
“And one day, he’ll say to me, “Elphaba,
A girl who is so superior,
Shouldn’t a girl who’s so good inside
Have a matching exterior?
And since folks here to an absurd degree
Seem fixated on your verdigris.
Would it be all right by you
If I de-greenified you?”
And though of course,
That’s not important to me.
“All right, why not?” I’ll reply
Oh, what a pair we’ll be
The Wizard and I…” – The Wizard and I, Wicked
Pardon the gratuitous quoting, but I was thinking about this as I surfed through the various Moebius syndrome groups today… there’s such a fine line between “degreenifying” ourselves. We all do it… by surgery, by submitting to speech therapy way past the age it is considered “fun”, by thinking about how others view us… and the hard thing is that there’s usually no good answer. What is the answer for one person is not the same for another. I can give you a good idea of what I think, given my personal experiences… but who am I to say that anyone else with Moebius will have the same experiences? Of course, I can’t.
I see people so happy (well, not totally happy… you know what I mean) about upcoming surgeries and I can only pray that they and their children get what they want from it and it helps them. For me? Who knows. I was both too old and too traumatized to voluntarily do surgeries as a young teen, so I let that one slide by. Unless something drastically starts to sag or whatever, I think I’ll be surgery-less my whole life. But for me, with what I was born with and my personality, I think surgery and learning to live with the changes would probably have been more traumatic. So I’m content with the decision I made long ago.
And in a way that brings me back to the quote… by the end of the play, the characters all learn to put what they want and what they believe in perspective and to value what they have. I believe we can do both, support and encourage.
Last week’s New York Times Book Review had a fascinating review of a new book entitled The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son
by Ian Brown. The book is a memoir from a writer whose son has Cardiofaciocutaneous Syndrome (CFC). For me, I’m always fascinated by writing about disabilities in general… and most especially when it has to do with craniofacial conditions (which is very, very rare!) I’m thinking through approaching a larger essay project having to do with growing up with Moebius syndrome, so any inspiration I can gleam from other authors who approach the topic is wonderful.
And for the geekiness part of the post, the Italian Moebius Syndrome Foundation has released an iPod app/game that’s filled with information about Moebius! Hope people who can download it (it’s free!) and spread the word.
I was reading about a BBC show called Children’s Craniofacial Surgery featuring a boy with Moebius syndrome (which, unfortunately, we don’t get in the US – I just e-mailed BBC America to ask if it could be made available to the US streaming) and I really liked how they worded this:
“Harry is older, and has Moebius syndrome, giving him paralysis of the facial muscles. However cheerful he feels, he can’t smile. His parents left the choice of surgery up to him, and now he’s elected to have a major operation called ‘smile surgery’ to enable him to smile for the first time.”
I like that his parents embraced the idea of having surgery available, but up to him. It’s a hard thing to do, I presume, when the recommended age for surgery is so young… I’m sure many four-year-olds grasp the implications, but I’m afraid some do not. And coming from the point of view of someone who was very traumatized by surgeries as a young child, I am hesitant to say that this is the best course of action to take. It just seems wiser to wait until the child is mature enough to evaluate everything. I don’t know if this is the popular opinion in the Moebius community or not, but it is what it is. I’m definitely not by any means anti-surgery, I’m just in favor of waiting a bit and having the person with Moebius be able to evaluate for themselves the pros and risks of it (in most cases, of course there are exceptions to the rule).