Natalie A

Miscellany

This weekend I am going to MedX, a big conference this weekend about tech, social media and health. Super-excited!
They have an espresso bar. Enough said.
Had a great riding lesson today! Big takeaways: horse has four feet (duh), counting one two three four helps so much with getting a good collected walk; sitting trot: lower legs off, seat back, use thigh blocks.
Grateful for the work trainings I’m having, nice that continued education is valued.
12 days until DogFest East Bay!
Sometimes you get to the barn and your horse has a peacock feather left in his forelock from the girl before you and it just makes you happy.
This was really miscellany. Props to anyone who read through this rambling list.

In case you had any doubt

That appearances are important or that craniofacial differences are sometimes really rotten to live with… I present to you Donsld Trump:

“Look at that face,” Trump said about the former CEO of Hewlett-Packard. “Would anyone vote for that?”

“Can you imagine that, the face of our next President,” he added. “I mean, she’s a woman, and I’m not supposed to say bad things, but really, folks, come on. Are we serious?”

Sigh.

But her response actually garnered her lots of credit from me.

Fitting that this is occurring during Craniofacial Acceptance Month.

September is Craniofacial Awareness/Acceptance Month. On one hand I’m of course happy: Craniofacial conditions are terribly misunderstood and largely ignored by both the medical/disability and greater society. It is, quite frankly, a weird disability to have. You are part of both worlds. You can pass sometimes, not other times. It is tricky.

Then come the tag lines that make me cringe:

Beyond the face is a heart.

I’m smiling on the inside!

…Foundation of Smile

Etc, etc.

Now beyond the obvious irony of the focus on smiles when the population I am familiar with perhaps cannot smile or smile conventionally, I am slightly weirded out by the discourse – “beyond the face”, “comes from my heart”… it puts a weird kind of dissasociation between one’s insides and one’s outsides.

I see where they are coming from, but from a disability theory point of view it’s so problematic.

Being born with a visabile disability does not mean that one’s insides and one’s outside appearance are separate identities. My insides are irrevocably linked to my outsides, in both good and problematic ways. But they are linked.

To me, awareness is as much for the people affected by what they are raising awareness for as for the general public – it is about owning it, putting words to experiences and feelings, about taking control of your personal narrative.

I just hope these narratives give voice to the complicated world of craniofacial conditions.

Leverage

Sometimes you just need a bit of leverage. In riding, in life, in anything.

Today that came in the form of a jointed kimberwicke bit on Mr. Piggles the Morgan. Being a bit on the forehand, he is sometimes tricky to get truly yielding to the bit and light in your hands… actually, he’s usually the opposite of light! The kimberwicke is not dressage-show legal at the lower levels, but using it correctly can give me the feel I need to work on acheiving the same results with a snaffle if I decide to show next year.

The main takeaway from today’s ride (besides the usual – go forward, hands higher) was about my inside and outside reins working together and being complementary… inside to a heave bend, outside to enhance flexion. With the bit of extra oomph from the stronger bit, I could really feel the change and responsiveness.

Best part of the day, besides just being out there and having a good ride, was overhearing the other trainer in the arena complimenting my position… to have someone say I’m straight in the saddle is testament to the hard work of my trainer and I.

Can’t wait for my next ride!

Mailing my spit

So this is what making saliva samples to some of the preeminent Moebius syndrome researchers in the country looks like! They are actually going to sequence the entire genomes of both me and my parents, which is pretty cool!

They gave me the option to get information on everything – even what’s totally unrelated to Moebius – and I said yes. Mainly because more information is better in general, and I’m interested with some of the other autoimmune things I have going on… who knows what’s happening with my genes.

Excited to send this off and see what information it yields.

Conference journeys

Last weekend, I attended a planning meeting for the 12th Moebius Syndrome Foundation Conference. As always, it’s lots of work with big rewards at the end… but can I reiterate, lots of work. It’s familiar work, though. I know the rhythms, the questions, the work I have to do. It is a long hallway with crazy purple carpet, but I know (mostly) where it will lead me.

I guess that is what I am both most looking forward to – and a bit nervous about – at my first time at MedX this fall. I’m excited, but that is tempered by the fact that I feel a tad bit inadequately prepared for this.

Yes, I love social media and using social media to connect with others within the Moebius syndrome community and the rare disorders community… I’m just hoping that’s enough to make me not feel completely like a fish out of water! At least I hope so!

Still…

The song lyrics from which this blog gets its title, last night in Concord:

Still I can’t be still

Still I can’t be silent

Still I can’t be still

Still I can’t be saved

Still I can’t be still

I can’t be silent

Still I’m….still
The insatiable peace

My quest for, for true serenity, yeah

No matter how hard the rain, the thirst

The thirst is neverending… – Idina Menzel & Milton Burrough

No need for a full concert review, but it was truly a wonderfully eclectic and powerful show, as usual.

There’s A Dog For That!

I love the tag line for International Assistance Dog Week. Because there is a dog for lots of different “thats” – some that we think about a lot (guide dogs, to some extent service dogs), and many that we don’t (hearing dogs, seizure response, diabetes/blood sugar alert, PTSD…).

It’s important for me to look outside of my little Lab mobility service dog bubble and see the variety and talent of amazing assistance dogs who do incredible and different tasks to help mitigate a variety of disabling conditions.

For more information on International Assistance Dog Week, check out assistancedogweek.org.

ADA25

Fittingly, I will be spending part of this 25th Anniversary of the Americans with Disabilities Act at work.

It is a good reminder for me to step back from obsessing over career trajectories and picking up more shifts and so on to think about the fact that it is in part because of the disability rights movement that I am working in the first place – that I was able to attain the education that enabled me to get this job in the first place, that such things as “reasonable accommodations” in the workplace even exist.

I don’t work in the disability field, and that is partially thanks to the ADA. Even in the mid-2000s, the operating assumption was that I would choose that path. The ADA showed that people with disabilities can and do work in every sector, in every environment. That is part of the impact of the ADA.

So that is how I will celebrate, in the mundane rhythm of work and life. As everyone should be able to.

Chapter Workshop

Yesterday the East Bay and South Bay Canine Companions (note to self: not!CCI) held their annual Chapter Workshop together. This is the first one I’ve attended for some reason, and I’m so glad I did!

You know the day is going to be great when one of the first people you (and the dog) see after getting out of the car is James – Cassius’s trainer and now the Puppy Program Manager for the Northwest Region. Cassius momentarily turned into a goofy wiggly happy puppy, but mostly contained himself and did a somewhat respectable greeting. I love how much he loves all his people, even after many months of not seeing them.

Now to sessions: these included the over-managed and under-managed dog (which reminded me of a few handling errors/shortcuts I tend to make and how I need to be better about them – imagine that, Cassius is a lot less likely to forge when hurrying when I ask him to sit beforehand!), things about loading and unloading from the car (James made me feel better about how we do that/car-riding in general).

We had a little time to visit and say hi to people and dogs alike, including the cutest black fluffy puppy I’ve ever seen. They need to breed more black fluffies! Then we had a session outside on appropriate play and encouraging dogs to play appropriately using rewards without expectations – that was a new concept and it made a lot of sense.

An update on some of the programs going on – PTSD study (including the best video ever of one of the dogs showing off the Search skill!) and the fMRI study – was followed by one on the breeding program, loved hearing about that as I don’t follow it too closely. Apparently there is a huge long waitlist for a dog in the NWR, which is a good problem to have although not good if you’re waiting for a puppy!

We ended the day with more visiting of humans and dogs, and I left as always – inspired by the people and dogs I am privileged to work with.

Author Archives: Natalie A