Musings from the Frozen North

Well, I’m writing to you from the frozen north. And I mean that literally. Even though it’s June, when we woke up this morning, it was 32 degrees Fahrenheit. You don’t have to tell me how wrong that is.

I have been thinking a lot these past couple of days about how secondary disabilities can often be even more difficult to deal with than the ones that people think should be the most problematic. I know that many of us have additional challenges to contend with: psychological conditions like depression, or physical disorders like arthritis or chronic fatigue.

Nearly 7 years ago, I was in an accident that left me with five fractured vertebrae and a broken right wrist. As a result, I now have residual pain, a neurological condition called Restless Legs Syndrome, and what appears to be Fibromyalgia. I was speaking to another visually impaired friend about these types of disabilities awhile back. She told me that if someone appeared and offered to magically take away only one of her disabilities, she would choose her chronic fatigue in a second. I knew exactly what she meant.

Even though, on the surface of things, blindness seems like it would be the harder thing to live with (what with all of the technological bells and whistles and issues around access and accommodations), it is a known quantity. I know how to “do” blindness. I know braille, how to use a screen reader, and how to explain my needs to other people when I have to ask for their help. I’m used to all of the attention my dog gets when we’re out and about, and all of the tactile labels and talking gadgets around my house. In short, when I wake up every day, my blindness is still there–still the same. I know that isn’t the case for everyone. Some of you have eye disorders that are unstable or degenerative. For me, though, my eyes are prosthetic, and so I always see the same thing–nothing.

This, in and of itself, can be difficult to make people understand. I get asked all the time. “How much do you see?” When I respond with “nothing,” they persist with. “But you must see colors or light.” I continue to insist that I see nothing, and they continue to insist that I must see something, until I’m forced to tell them bluntly. “My eyes are made of plastic.” It horrifies them, but they definitely stop asking questions about my vision.

I think I could have a lot of fun with the fake eye thing, if I were just a bit more twisted than I already am. I was in a subway station one time, when the ticket taker asked to see my special photo ID transit pass for passengers with disabilities. When I showed him the ID, and pointed out that I probably wouldn’t be using a guide dog if I were sighted, he responded that I could have been faking it. Right. Because I want to ride the subway for free so badly, that I’m willing to make up a disability. I had this crazy urge to pull one of my eyes out, slap it down on the counter in front of him, and say. “Fake this, buddy.” People can be so incredibly dense sometimes.

In another subway riding adventure, I walked into the subway station, and when the person on duty saw me with my dog, they buzzed me through the turnstiles. As I was walking away, this guy yelled. “Hey. Why does she get to ride the subway for free?” I looked over my shoulder and yelled back. “It’s a perk.”

Speaking of perks. How many of you have had people say things to you like. “You’re so lucky you get to take your dog with you where ever you go.” Have you ever wanted to tell them. “You’re so lucky you don’t have to take your dog with you where ever you go, because … um … you can see.”

Anyway, in spite of all of that, I’d gladly keep my blindness if I could ditch the pain or the fatigue. Besides, without my blindness, where would I get the material for all of my strange stories?

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Sidewalks of St. Petersburg

Recently, I started working on an outline for a radio spot that will air on WMNF, 88.5, Tampa about “Sidewalks as a Civil Rights Issue.”  The radio spot will discuss the pedestrian life in St. Petersburg, Florida and how it effects people with disabilities.  I will interview a friend in a wheelchair and talk about issues related to blindness as I personally experience them.  The story will not include my friends who have lost their right to drive due to some legal infraction as I cover disability issues, not drunkenness and stupidity.


I have lived in and spent a lot of time in US cities where the pedestrian life makes those of us who do not drive feel like first class citizens.  New York, especially Manhattan, affords the pedestrian the greatest access in this country and probably in the world.  With all of its right angles, well kept concrete sidewalks and slow traffic patterns, Manhattan welcomes pedestrians, people in wheelchairs and blinks with guide dogs with open arms.  Add the excellent New York subway and bus systems and car free in Manhattan has benefits that outweigh the difficulties and expense of owning an automobile in the Big Apple.


After Manhattan, Metropolitan Boston (including Cambridge, Somerville and Brookline) and San Francisco probably tie for second best.  Both of these major city areas have a common problem: they have a strong fixation with the visual appearance of some of their neighborhoods and, to keep property values high, they have torn up perfectly good concrete slab sidewalks and replaced them with brick.  On the concrete pathways, one needs to look out for one edge or another heaving up to create a potential obstacle, something a well trained guide dog will notice and nothing too high for most wheelchairs to hop over.  Brick sidewalks, while decorative, over time form highly irregular patterns and at virtually any point on one’s path, one might find a recess filled with water or ice, a few bricks heaving up or any number of other defects on a pedestrian can trip or a wheelchair can have trouble.


With the bricks aside, though, both Metro Boston and San Francisco provide a tremendous level of pedestrian friendliness.  When I lived in

Harvard Square

, I could walk to a huge number of places and by subway or bus; I could get almost every place in the metropolitan area.  Blind Friends who live in San Francisco describe a similar level of access but, one in particular, takes taxies out of laziness as he chooses to avoid walking up the steep hills.  I don’t know how Frisco serves people in wheelchairs but I guess the hills must cause problems.


Most every other American city has neighborhoods which provide good pedestrian access and large portions that do not.  Many of these cities divide themselves into pedestrian friendly cantons that one cannot get to from any of the others as major highways and high speed streets make leaving one’s territory very difficult.  In these places, I think of the old New England phrase, “You can’t get there from here.”


St. Petersburg has a pedestrian friendly downtown but gets less friendly as one gets further from the downtown business district.  Some people claim that St. Petersburg is designed on a grid system.  In a way, there is a grid with avenues running east to west and streets from north to south.  A real grid, like Manhattan, though, has very few missing pieces.  In St. Petersburg, one might walk south on

eighth street

(where I live) and find themselves at the corner of

30th Ave.

  If they want to continue south on

eighth street

, they must walk approximately one half block east and then cross 30th and find the connecting portion of

eighth street

.  If you continue east on

30th Ave

, you will find

a 7th Ave

and a 5th and 4th – where is 6th?  No one seems able to remember what happened to it.  Disappearing streets, avenues and portions thereof happen all over this city so “grid” really means, “maze with mostly right angles.”


Sidewalks in this city start and stop randomly.  On my street, the sidewalk starts in front of my house and runs to the front of the house due north of us.  Oddly, neither of these houses sits on a corner.  We have a sidewalk segment in the middle of the block that serves no useful purpose as a pedestrian or person in a wheelchair needs to go into the street to get anywhere other than my house and that of my neighbor.  Other whole blocks will have no sidewalk, others will have a sidewalk that starts at the corner, goes a half block and then stops.  The St. Petersburg City Counsel doesn’t see this as a problem.


As few home owners in St. Petersburg also use the sidewalks, pedestrians are a rare breed in this town, they will often allow hedges and tree limbs hang over the sidewalk for decorative purposes.  My guide dog is pretty good at alerting me to head high obstacles but, in some cases, the growth crosses the entire sidewalk and I need to duck down quite a bit to fit underneath.  This morning, as X-celerator and I took our exercise walk, I had a bag of poop in my hand.  As I passed one of these overgrown spots, I contemplated tying the bag of poop to the overhanging limb.  I figured that if I had to risk having my face scratched, they should have to discard my dog’s poop.  This would be using poop as a political statement and, if I remember correctly; such uses of doodoo are protected by the first amendment.


The poop issue raises another problem with the mostly suburban cities of modern America.  While some neighborhoods have sidewalks, they rarely have public trash receptacles.  Thus, those of us who have guide dogs who may need to relieve themselves from time to time who considerately pick up poop in a plastic bag have no where to drop the baggies.  Finding a garbage can in a stranger’s yard is nearly impossible but the auto mechanics down the street from me always offer to take the bag if they see me walking with a bag of crap.  This morning, I had to walk for about ten blocks with a bag of poop in my right hand and my dog’s harness in the other.  When I crossed a street and waved to a motorist who paused for X-celerator and I to cross, I waved with a bag of shit in my hand.  What sort of message does this send?  How does one appropriately accessorize for a bag of dog poop to be a becoming fashion statement?


Needless to say, St. Petersburg is neither pedestrian nor wheelchair friendly.  The radio piece will point to specific problems and, hopefully, we can interject a little humor.


— End



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Traveling Trials and Tribulations

Since I’m leaving for Canada tomorrow, I thought I would devote today’s entry to the issues I face when traveling–both as a blind person,and as a blind person with a guide dog. There was a time (back in my corporate days) when I traveled much more than I do now, but I still fly frequently enough that I would view it to be a considerable aspect of my lifestyle.

I think that, particularly in the post 9-11 era, travel has become more and more of a challenge for me. Some of my biggest struggles have been around airport security, layovers, and getting assistance when in strange airports.

Sure, there are other inconveniences (like the no liquids that don’t fit into a Ziploc bag thing). (How happy must Ziploc be with this latest security requirement, with their products in every airport around the country?) I’m not making a jab at Ziploc here. In fact, I’m a huge fan–having obsessive compulsive tendencies when it comes to organization.

But the liquids rule is something that everyone has to deal with–blind or not. Oh, I know sighted folk also have to navigate security checkpoints, but I think the experience takes on a whole different meaning when you’re doing it with a dog. Even though it has been nearly 6 years since 9-11 (wow, how time flies), I am still amazed at the number of airport personnel who don’t appear to know the laws regarding service animals. I know some of it isn’t their fault. I mean, the TSA changes procedures like most people change underwear. Still, it boggles my mind that my dog and I are treated differently in almost every airport we visit.

Sometimes the TSA employees at the security checkpoint hardly look at my dog. (This made more sense to me when I worked a GSD, because they can seem a bit more intimidating. However, I am now working a Golden, who looks more like a guide Gund than a guide dog.) At other times the search of my dog is very thorough: with the individual checking inside his harness pouch and under his harness sign, and sliding their hands between the harness straps and his body. Even though it takes longer, I actually prefer this type of search. It makes me feel safer somehow, because I am more confident that all of the other passengers in the airport are experiencing the same type of scrutiny.

Still, I have had other things happen to me and my dog that are just plain odd. I was in one airport, and had implemented the procedure I typically use to get my dog and I through security checkpoints. (I place him in a down-stay, walk through the tunnel with the sensors in it so the agent can hear whether or not I make the metal detector go off, and then I call my dog through.) Of course the metal in his harness always activates the alarm, but usually the agent only searches him, since they’ve already seen me walk through without incident. In this case, the woman on duty told me that they would have to examine us both. When I asked why, she told me that because I had touched the dog, he had now “contaminated” me. I looked at her incredulously and said. “I know I can’t legally refuse a search, so I want to make it clear that that isn’t what I’m doing, but I just want to tell you that that is one of the stupidest rules I’ve ever heard.” She didn’t search me.

Another time, I was about to walk through the metal detector when an agent approached me and said. “It will be easier if I just take your dog from you.”

I replied that what he was proposing wasn’t legal, and that my dog would be staying with me.

He actually responded. “I know it isn’t legal, but if you choose to give him to me than it’s all right.”

I told him emphatically that I didn’t choose to turn over my dog. At that point, a supervisor rushed over. Perhaps he noticed the flashing neon “LAW SUIT WAITING TO HAPPEN” sign above the other guy’s head.

Layovers are also difficult–both because of the increasing lack of assistance being provided in airports, and because of the whole relieving the dog problem. I now try to avoid layovers at all cost. If I can get from one place to another on only one flight, the chances are that much smaller that I won’t end up stranded or delayed for hours. Several years ago (shortly after 9-11), I had a layover in Chicago on my way from Hartford to L.A. When I got off the plane, I explained that my dog would need to go to the bathroom. At first they told me that wouldn’t be possible. When I explained that that wasn’t an acceptable answer, and asked for the location of the nearest potted plant, they said that one of their employees would take the dog out onto the runway to pee. Now, those of you who use dogs know how likely it is that a dog is going to go to the bathroom–on a concrete surface that smells like jet fuel, with engines screaming near-by and mechanics and baggage handlers running around–without you being present. I initially said that even though I didn’t think it would work, I would be willing to try this proposed solution, as long as I could accompany the dog outside. They responded that I couldn’t come along, because it was a “secure” area. At that point, I became so exasperated that I said. “I’m blind, for God’s sake. What am I going to do, run from you?” A semblance of sense (or maybe it was shock) finally prevailed, and I was able to convince them that the dog and I should stay together. Thankfully they then decided that neither of us should be allowed on the runway, and that it would be better to take us to the arrivals area, where there happened to be a patch of grass. I was able to avoid having to wait in the extremely long security line again by leaving my carry on bag with the security supervisor. This meant that when we returned, they only had to swipe a wand over me and my dog before we were allowed back into the gate area.

The final issue I mentioned above is the problem of getting assistance when in strange airports. More and more of late, I have found myself relying on the kindness of fellow passengers, or my own exploratory skills, rather than waiting the requisit 45 minutes for an employee to show up (if they show up at all). And, if they do show up, I find that it is becoming more and more likely that they are terrified of my dog to the point that they are unable to function, that they expect me to ride in a wheelchair, that they already have a whole gaggle of other passengers (either minors or people with various disabilities) with them, or that they don’t have the faintest idea how to interact with someone who is blind. I actually had a North West employee in the Minneapolis airport tell me that they “didn’t have to help people with disabilities; they only had to help children.” Did I mention the flashing neon “LAW SUIT WAITING TO HAPPEN” sign? I asked her if she had ever heard of this little piece of federal legislation called the Americans with Disabilities Act.

I don’t know what the solutions to these problems are. Obviously better training for both TSA and airline employees comes to mind. You know, the basics, like: address the person rather than the people around them if you want to know what they need and where they are going, and assign someone else to assist a dog user if all you can do is stand there and shriek. Perhaps we need to install talking signs in airports that direct people toward major areas, like baggage claim, ground transportation, and particular gates. Perhaps someone needs to design some sort of GPS-type system that works indoors. Perhaps we need to coordinate our efforts so that several of us all show up at an airport at the same time, just to freak out the airport employees (a vengeful thought, I know, but entertaining none the less).

In the meantime, I have come to view the process of traveling independently as an extreme sport, and have learned to expect a total lack of competence and assistance from the majority of airport employees. That way, when things go smoothly, or when I meet someone who actually knows how to help me effectively, I am pleasantly surprised, and very, very appreciative.

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