Being Labelled

I’ve been thinking a lot about labels because a life-changing experience often changes how others see you. For example, I have gone from being a “sighted person” to a “visually-impaired person” - or as the politically-correct will insist, I am now a “person with a visual impairment”. Supposedly the latter is more empowering, as labels go, but according to my understanding of English it is simply a passive phrase. I don’t know.

A friend asked me, “What do you say to someone when you need assistance?” I simply say that I don’t see very well – that seems pretty straight forward and unthreatening. I know a man who actually wears a button that says he’s visually-impaired so that others will know that he has low vision and is not just clumsy or drunk. The CNIB encourages clients to use a white cane to identify them as having low vision. I use my white cane strictly for mobility.

Whether I want to admit it not, optic neuritis left me with a visual disability. Unfortunately, it means that I need to be labeled so that others can “understand” me. I am neither fully sighted nor completely blind. The fact that I can no longer drive my car, cross the street safely without my mobility cane, or use my computer without assistive software tells me that I am blind. Rather than accept that I have impairment, I employ new skills and alternative techniques to do most of the things I used to do.

People are very curious to know exactly what I can and cannot see but don’t always come right out and say what’s on their minds. I find children’s honesty and empathy refreshing. I show them how my cane helps me “see” bumps and stairs and I love when they ask to use my cane to try it themselves with their eyes closed.

Adults on the other hand need the specifics; they want me to describe exactly what I see compared to them. There seems to be degrees of acceptance involved. It insults me when someone says, “oh well, then you’re not really blind.” Despite meeting the medical definition and government criteria, I guess to them the label doesn’t fit me – as if somehow I’m cheating or making it worse than it is. Yes, I have some remaining sight, but I have to work very hard now to navigate my new world and do all the things I used to take for granted. But I’m still me – neither label changes that.

Visiting

Going away to visit someone is always a bittersweet event these days. Gone are the days when I'd jump into my own car, listen to my own music, and head off somewhere for lunch with a friend or an overnight visit. I really miss driving. Although it has become easier to sit back and relax while someone else is driving, there are times when I have to bite my tongue and resist "back seat" driving. It has been so hard to relinquish my control over the vehicle - my family hasn't nickname me "Miss Daisy" for nothing!

It surprises me that after all this time I sometimes feel such overwhelming sadness about the dramatic way vision loss has affected my sense of independence. Most days I am content with what sight I still have, and I'm happy to be able to take the bus somewhere on my own. But it is when I am waiting to be driven somewhere that I feel my loss of independence most keenly. I have spent a lot of time waiting...

IKEA

We had to go to IKEA on a Saturday, which meant that it was extremely crowded - not good planning. I have grown to hate any kind of crowd since my vision loss because people move unpredictably. I find myself in a constant state of anxiety when people dash in and out of my field of vision. This shopping experience was no exception. Stan is fiercely protective of me and my personal space but even this got to be too much for him. Toward the end of the shop we had to have two carts , so I pulled my shopping cart along beside me with my left hand which is what I found works best as it still allows me to use my white cane in my right hand, and I'm not bumping into things like I would if I simply pushed the cart like I used to. Even still, I bumped into a few things but it wasn't too bad. But as we prepared to leave, we rounded a corner and I panicked - there is a food court at IKEA's exit, and it was packed with shoppers. I stopped dead in my tracks and told Stan that I didn't think I could navigate that space. He said "sure you can" and pulled my cart in behind him. There was a log jam of shoppers right in the doorway. I could see a man's head beside me and I could tell that he desperately wanted by. I apologized (which is something I shouldn't do, but I can't help myself) but what he wanted was to get by so he could help Stan with our carts. He was wonderful! And his actions made up for all the people who had cut me off or entered my personal space. We talked about him off and on all the way home.

Guests

I get panicky whenever someone comes to visit because I can't see the dirt, dust, or dog hair anymore. It is hard to remember to wipe all surfaces when you don't have the visual clues. I'm especially guilty of forgetting to vacuum until the movement of dust bunnies "tumble weeds" rolling by catch my attention (my ability to see movement is still pretty good). You'd think because I have the perfect excuse for not cleaning well that I could relax, but it bothers me more than ever. I really should hire a house keeper. The one good thing about not seeing dust is that it makes me a great guest!

Everyday life since my vision loss

So just the usual hazards of not seeing well today- I gathered up all the things I needed for my latte, but when it arrived I couldn't find the paper sleeve and had to ask the people in line behind me if I'd dropped it. A woman three people back pointed out that it was on the yogurt container in my hand - oh yeah, now I remember doing that.
It would be so nice to just go in Starbucks like I used to and get a latte without struggling to find the sugar, lids, sleeves. Or to remember where I put the sleeve...

I also tripped over the dog twice today. She used to be faster.