This week, I took two small but important steps to make this expedition I’m planning something more than words on a page. The first is a matter of simple necessity. I fished my passport out of the drawer where it’s been gathering dust, and it is now on its way to the State Department for renewal. So I can cross one item off of my to-do list.
The second is, to me, more exciting. I signed up for sailing classes with the Marin Sailing School. This is an incredible organization with a nonprofit arm that teaches basix and advanced sailing skills to people who are blind and visually impaired. I’m trying to convince them to let me bring a camera along when I take my first class on August 30. If I’m very lucky, this will dovetail with an effort to get part of the expedition sponsored by GoPro, a company that makes an incredible little camera that mounts to a helment, a handlebar or anything else you can think of to capture high definition footage of outdoor activities. I’ll write a lot more later about how I’m hoping to grab on to and retain any wisp of the photography skills I’ve learned over the years, and this may be at least part of a solution. The sailing instruction is something I see as vital when it comes to the plans for the expedition. There’s a lot to learn. Intricate knots, tacking skills, coxswains on the port side (or something to that effect). Bring it.
OK. The heavy frog.
When I worked in Colorado Springs, I’m pretty sure my news director harbored unfulfilled dreams of being a pilot. Perhaps an air traffic controller. Maybe even just a cabbie whose territory included the airport. This is the only justification I can come up for the abnormally large number of times reporters were forced to cover stories at the airport… that he was living vicariously through us. We came to dread the summons we would receive while we were in the field that always started the same way: how close are you to the airport?
I will grant you this. Taking on the role of “Stand Outside the Airport” Guy was far preferable to the role of “Stand Outside the Courthouse at Ten O’Clock at Night in Order to Talk About What Happened at the Courthouse at Ten O’Clock in the Morning” Guy. At least at the airport, you could grab the latest issue of Entertainment Weekly and a Mars bar. Still, it wears on you after a while, and although I would very much like to claim I was the reporter in the following dialogue, I have to admit I was only a bystander in the newsroom when this exchange took place over the two-way radio.
News Director: Hey, how close are you to the airport?
Reporter (clearly suspicious): Why?
News Director: Need you to get out there. There’s heavy fog.
Reporter (after a very pregnant pause): Your signal’s breaking up, but I think I heard you. Something about a frog?
News Director: No, a fog. Heavy fog. At the airport.
Reporter: OK, got it. Heavy frog at the airport. What, is it like sitting on the wing of a plane or something?
News Director: No, no! I don’t think you can hear me. It’s fog. Fog. Heavy fog at the airport.
Reporter: Yes, yes. I got it. A heavy frog.
News Director: Repeat, heavy fog. Heavy fog at the airport.
Reporter: Wait, did you say heavy… fog?
News Director: Yes! Heavy fog!
Reporter: Well…. that’s not a story!”
We joke about the heavy frog to this day. It’s the definitive symbol of the perfectly reasonable response anyone should have when asked to do something for less than plausible reasons. Plus, the visual of a large frog weighing down the fuselage of a 737 is just funny any way you slice it. While I do feel somewhat guilty using the metaphor of the Heavy Frog for anything remotely serious, it actually seems somewhat appropriate, because I want to write about why I’m planning this worldwide expedition, even though the underlying reason I’m planning it… specifically, my future as a sighted storyteller, is so very unknowable right now.
“Are you eventually going to be completely blind?” I get this question a lot, and the straight up, honest answer is that I don’t know. It very much seems that way. I’ve had close to twenty surgeries since I was thirteen years old and most of them have not worked. The ones that have worked have resulted in a holding pattern at best, reduced vision or the loss of vision entirely at worst. The surgery I had on May 6 of this year was a mix of both. The surgery was my most recent experience, of many, with a technique that involves the use of silicone oil. The oil is implanted into the eye in order to stabilize the retina and prevent it from detaching. The oil itself is an inert and technically harmless substance, in that it is nontoxic. It, however, has its shortcomings when it comes to being a viable long-term solution for vision issues. The longer it remains in the eye, the greater chance it has of damaging the cornea. Right now, the oil in my eye is not only impacting the quality of my vision, it is having that adverse effect on the cornea. While it is keeping what remains of my retina from detaching yet again, those benefits seem to be coming with a price. The last surgery also ended up creating more scar tissue on the retina itself, and when you’re dealing with an organ as thin and beaten up as my retina is, even the relatively small weight of that scar tissue is dangerous. Basically, there are three issues working against me right now: the corneal damage, the retina damage, and the inability of my eye to heal itself after this many surgeries. It’s hard to push away the feeling that something is going to get me sooner or later, and I have yet to get a definitive answer to the contrary.
Still… it hasn’t gotten me yet.
So I’ve been on the fence about how to talk about this expedition, because writing about seeing the world as a blind person, or even the more technically accurate “visually impaired” person before I actually go blind seems like the equivalent of the heavy frog. A person who can still see talking about traveling the world? That’s not a story. Not when there are actual blind adventurers who have reached the summit of Everest, rafted the Colorado and surfed the waters off the Pacific coast. What’s the story I’m bringing to the table? This is what I keep asking myself, even in the midst of living in a world where, if I don’t use the now ever-present white tipped cane to make my way to my office, the supermarket or anywhere else I need to go that is not the interior of my house, I will definitely walk into a telephone pole, miss a curb or accidentally barge through a construction barrier. Where the most reliable way to get to the dry cleaners is to remember that the entrance is exactly twenty-three sweeps of the cane from the intersection of the block it’s on. Where the feel of the trail under my trekking poles is infinitely more reliable than whatever fog and blur I can see through, during those periods when I can see anything at all. Yes, there are equally as many periods in the day where the world is entirely an opaque blur, with little but light perception and general shapes to guide my way while I’m waiting for that silicon oil to stop flippin’ moving around so I can at least see a little bit through it, Even with all that, I’m still at least nominally sighted, so what right do I have to claim the mantle of intrepid explorer, when others have done more with less? I’m not completely blind yet. The world could and perhaps will be even harder to navigate in that event. Wouldn’t navigating that world be a more interesting and compelling story at that point?
Probably. Mayhap my story will unfold that way, but for now, I’ve been thinking a lot about why I need to tell this story now, while I’m in what I’ve come to think of as the muddled middle.
For me, it distills to three words. Urgency. Action. Results.
Urgency. I want to walk a fine line here, because it’s important to me not to stomp on the shoulders of the giants who have come before me. The ones who have fought so hard and proven after great effort how accessible the world can and must be for people who are blind. So it’s important for me to make every possible effort not to undervalue or disrespect the achievements the blind have made while also saying I want to do as much as I can with my eyesight while I still have even a sliver of sight remaining. I think it’s not wrong to value what remains of this particular sense while I still have it, while also saying I’m ready to take on the world of no sight at all as best I can… if and when that happens. I do feel that sense of urgency, that feeling if time is not on my side, then I should squeeze every last drop of pleasure from the world I live in now before I live in the next one.
Action. There’s a new museum being built in the Bay Area dedicated to the achievements of the women who kept the factories running during World War II. Because its run by the National Parks Service, it must be ADA compliant and accessible. I was speaking with a friend this week about the consultation she and her blind colleague did, and of the frustration on both sides, because they and the contractors for the exhibit were clearly talking past each other. The contractor has done an admirable job of providing audio descriptions for the various displays in the museum, but the reason this is all for nothing is that there’s been almost no recognition of the need for accessible navigation throughout the facility. For example, after listening to the descriptions of one exhibit or display, there aren’t any audible or tactile directions as to how to get to the next display. This might seem like a minor issue, but imagine placing yourself in the middle of a room with no visual cues, and an unknown number of obstacles that, ideally, should be followed in a particular sequence in order to match the tour, and you have no idea how to properly navigate your surroundings without getting lost or, even worse, doing damage to the exhibit. The blind are left to wander about the installation and, I presume, hopefully stumble into another display area, although there is nothing to indicate when they’ve reached the correct location. This is a problem that can easily be fixed by, say, adding a line to the audio track that says something like, “Now turn around and walk straight for ten feet and then turn right and walk twenty feet, where there will be a Braille placard.,” or something similar. An orderly progression through what was formerly a confusing and incomprehensible obstacle course is possible, but this step was not taken. The contractors were upset and it was apparently clear that the blind accessibility experts on hand were meant to rubber stamp the work done so far, because the contractor seemed to have no appetite for modifying the work they had done up to that point. The consulting team, at this point, has no choice but to report that the museum is not ADA compliant, and I think this is a shame, not only because from every source I’ve talked to, the National Parks Service staff curating and creating the museum are completely on board with any ideas that will make the museum accessible to all (and are excited about that prospect as well… a nice value add), but also because the only factor holding this goal in check is reduced awareness at the start of the project. It’s the action taken by advocates for the blind and visually impaired that is making sure that educational opportunities are accessible and enjoyable for everyone who can avail themselves of those opportunities. Without dedicated action, good enough will always be… well, good enough.
I want to make the following point now, because it’s important. I’m not going out to climb Uluru to pressure the Aborigines to build a paved trail to the top, and I’m not trying to get the curators of the Louvre to allow me to touch the Mona Lisa in order to appreciate its brilliance. However, I am trying to take actions that prove… first to myself, and then hopefully to many, many others… that the blind and visually impaired can experience the world’s rich palette as deeply as any fully sighted person. I want to prove that if I can sail a J24, if I can reach the top of a fourteener, if I can live in the world around me with as much passion as anyone else, then taking steps from the start to make that world even a little easier to navigate and appreciate should be part and parcel of any gig. This is something I can take action on today, muddled middle or not.
Results. I want this to be the nonnegotiable metric of anything my team and I set out to do. My results, and the results of my team, who are working for the causes we believe in should be held to this standard. The result of any of our efforts should be more than “did you succeed in your expedition?” but also “what did your expedition accomplish?” There are so many ways to gauge success if we set up goals that are results based. I want to see more blind hikers. I want to see more blind sailors. I want to see more blind CEO’s, teachers… and single parents. There are a few of these, yes, but there should be more. I want to see more blind… everything. However, I do not think it’s incongruous to also want to see fewer of these descriptors, because I want to see both increased accessibility and adaptability… and I want to see more research and application of the scientific and medical progress that has to happen in order to turn the eye into a more repairable organ.
Urgency. Action. Results. These are my goals. It’s a tall order, but I think that big ideas are the ones worth having.
Heavy frogs notwithstanding.
