Let's Talk About Place Blindness and CP

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Place Blindness:  the inability to orient oneself in one's surroundings, as the result of focal brain damage.

Place blindness, (also known as topographical agnosia) is something I have lived with my entire life without knowing it.  Until very recently I'd believed it when people around me told me my disorientation in public places was due to insufficient attention or the fact that I don't drive.  I happened upon one sentence on a social media site that changed everything for me.  It was something like:

Does anyone else with CP constantly get lost?

There was a small internet chorus of "yes!" and "I thought I was the only one!" Then came the response we were all waiting for.  There was a name for this.  Ever since then, it has felt like something has clicked into place for me.

In my brief research for this post, I've seen place blindness associated with autism and brain injuries.  However, there are no results when I search for both place blindness and Cerebral Palsy.  As CP is a result of brain damage, it would follow that at least some people with CP experience place blindness.  (Of my handful of friends with CP, every single one seems to have symptoms of topographical agnosia:  two get lost in Target stores, one said honestly that if expected to, she could not find her way home from three blocks away on a straight sidewalk.)

In layman's terms, place blindness means that I can navigate place to place only if there are significant landmarks guiding me.  I can go to the store beside my apartment building because my building is always in my line of sight as a landmark.  I can navigate inside the particular store because it is fairly small and they keep things in the same place.  I can even venture down the block, if I can see landmarks the entire time.  Landmark A must be visible from my apartment.  Landmark B from Landmark A and so on.  The same is true in reverse.  If the landmarks I rely on were to ever change, I would be lost.  Though I have lived in the same place for 10 years and my parents are 5 minutes or so away, I could not tell you how to get from here to there.  I know both street addresses, and the name of an important highway linking us, but I could not give you directions from place to place.  Likewise if you needed to rely on me to tell you how to get from my parents' house to mine, I would be even more confused, as all previous directions would be flipped and in reverse order.

I've gotten lost for an entire class period (that's the best part of 85 minutes) in my own high school because I arrived at the usual classroom slightly late and found a note that indicated the class had moved to a different room in a hallway I had no idea how to find.  While vacationing out of the country with my family at a resort, I once thought I was following my sister, and belatedly realized I had lost her and was following a stranger.  By the end of a week, I was finally barely beginning to be able to orient myself there.  I have trouble following if people point out something in a "Look over there," fashion.  "Over there," is too vague and I find myself looking everywhere and by the time I find where they mean, whatever detail that was pointed out to me has usually passed.  Your best bet is to point from behind me so I can follow the line of your arm down to your finger to see exactly where you are indicating.  This even extends to specific details on a TV show or video.

Here are a few key locations where my place blindness is the worst:

Parking Lots:  From the time I was very young, parking lots have been super disorienting.  If the door to the building I'm to enter is not in direct line of sight, I've been known to go in the complete opposite direction I'm supposed to.  When I was young, I did this to cope.  I felt if I picked a direction at random (left or right), I had a 50% chance of being correct, and I hated to annoy people by constantly asking, "Where?" This happens especially often if I need to go around the car to get to the door.  Walking back outside into a parking lot is equally baffling, because I can't easily identify someone's car unless they are driving it.

Department Stores:  Shopping in a bigger store is very difficult, because the sheer size is overwhelming.  I think it may have to do with being able to see the entire space from a single vantage point.  When I shop, even in someplace familiar like Target, things only look familiar when I am beside them.  Certain areas, like the food court, the checkout lanes or the multimedia section are fairly easy to find in a particular store because they also function as landmarks.  But in sections like clothing or grocery, I am lost again, unable to fit my surroundings into a larger context.  It is, to me, as amorphous as the lake against the grey sky in the picture below.

[Photo is a lake against grey sky, with blue mist rising off the water.  Photo credit to my sis.  March, 2013]

Restrooms:  Whether out to eat in a restaurant, at a friend's house I have never been before, or getting my hair done at the same place I always do, for some reason, finding the restroom is notoriously difficult.  If I ask where a restroom is and someone tells me "in the back," or "down the hall," for example, I struggle with the unclear directions.  Where is "the back" in relation to where I am?  Which hallway?  And once I find my way there, and exit, relocating my family or friends again is equally daunting and takes extra time.  The whole place looks completely different coming at it from a different angle.

There are some great tips in the link I shared above, but I would also add a few more, especially if you suspect your child with CP has place blindness:

- Teach your child to identify landmarks that may help them orient themselves in public.  ("There's the park with yellow and orange play equipment, that means we are almost home.")

- Make sure they know how to get in touch with you if they need to.  (If possible, teach them to memorize your cell number.)

- Send them out with a sibling or friend when possible, not alone.

- Make sure people who interact with your child on a day-to day-basis (such as teachers) know this is an area of concern, so they know to look out for your child, especially on field trips.

It's my hope that by finding this, you know that you are not alone.  There is a name for what you're feeling and there are ways to learn to cope.  By preparing and understanding that this is an area where you or a loved one might struggle, you'll be better equipped to function in your surroundings.

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