Own the Equinox: Connecting Flight

August 9, 2016

by Mark Dunning

Booked my flight to Australia. On Usher Syndrome Awareness Day I will be Owning the Equinox with Usher families in Melbourne. It’s hard to exaggerate how lucky I feel to be able to travel to amazing locations like Alaska and Australia in successive years. I know I am fortunate to have the means, the opportunity, and most importantly the ability to travel like this, particularly in the Usher syndrome world.

For those of us without Usher syndrome, air travel is a good opportunity to get a taste of what it is like to travel when you have Usher syndrome. People with Usher syndrome have difficulty travelling for a number of reasons. Hearing loss, for one. Have you ever tried to listen to a gate announcement? Between the horrible acoustics, the background chatter, and the gravelly static, hearing people make out one out of three words. It’s next to impossible when you have hearing loss.

As a person with Usher, you are taught to advocate for yourself in such situations. But have you ever tried to advocate for yourself with an airport employee? Many don’t make eye contact and those that do often convey a soul-stealing indifference. It takes a dose of courage to step forward and it is often more comfortable to not bother at all. But the uncertainty of missing information just makes the stress of traveling more acute.

And the crowds. Oy, the crowds. Darting, running, weaving. It’s a game of chicken. And of course there is the luggage wheeled or left standing at a height that most people with tunnel vision cannot see.

So, yeah, travel is not friendly to the average human much less to the person with Usher. Next time you are cursing the inconvenience and stress of air travel, remember that is a taste of everyday life for people with Usher.

Then, of course, there is the cost. People with Usher have a much higher unemployment rate than the general population. Luxuries like travelling cannot be undertaken frequently. Between the cost and the inconvenience, people with Usher tend to travel less. So when they do travel, they are less experienced and therefore more likely to struggle. You can see how this can become a feedback loop, with the frustration from travelling leading to less travel leading to more frustration from lack of experience leading to still less travel until a person with Usher doesn’t travel at all.

This is what Usher syndrome awareness is about. It’s demonstrating the impact of Usher syndrome on everyday life. It’s educating the general public on the difficulties a life with Usher involves. It’s these little things that paint the full picture of Usher syndrome to the general public. Everyone can relate to the aggravations of air travel. And everyone can relate to the compounded problems brought on by traveling with Usher syndrome.

Usher syndrome awareness is also demonstrating our resolve to overcome these limitations. People with Usher still travel. They travel great distances often with little or no assistance. I know. I saw them in Seattle last month when we sold out the family conference. There were families there from all over the US and from as far away as Finland and China.

The Own the Equinox event is an opportunity to educate the general public. So next time you are walking through a crowded terminal and are sent spinning by a shoulder to shoulder to hit with a passerby, recognize that the same thing happens to people with Usher almost every time they walk down a sidewalk. And when the gate announcement is unintelligibly garbled, remember that that is what the world sounds like to people with Usher syndrome. And when you are trying to get the attention of an airline employee who is actively ignoring you, remember that that is what advocacy often feels like.

Then use that knowledge to educate others. When you meet someone who has never heard of Usher syndrome, explain it to them in terms they can understand. “What is it like to have Usher syndrome? Well, have you ever travelled by plane…”

More posts on how you can help Own the Equinox to follow. I hope you will join me in raising awareness about Usher syndrome.

 

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