My teeny little office got turned into a full-blown production line this week when the Checkered Eye Project got flooded with orders from across Canada.

The 30 second checkered eye awareness spot we produced a few years back qualifies as a public service announcement. CTV apparently had some space to fill this week and generously aired it numerous times on national tv.

The response was almost overwhelming but I put my head down and got busy meeting the requirements of the day.

There were phone calls, e-mails, Facebook tags and comments.

We got offers to help, words of gratitude and congratulations, and only one snarky message! An excellent ratio I’d say!

We’ve never had this big a response to any other moment of publicity. There is a plan in the works to do fundraising and purchase some ad time this year, but I have a feeling we may not be able to afford another round of whatever it was we got for free this week!

Thank you so much CTV!

I was prompted by a reader to get back on the horse and write something current for this blog – thanks Robert! Here’s some great news…

The Checkered Eye Project (CEP) is now officially registered as a Not For Profit Corporation. This means we can potentially qualify for grants, will have better chances of receiving monetary support from the private sector, and, this is my favorite, we are now permitted to do raffles!

Current plans involve trying it out by doing a local raffle so that the municipality can issue our permit. This is less complicated than going through the provincial alcohol and gaming commission, as you can imagine.

The funds generated by raffles, grants, and public sector support will allow us to create and publicize more and better educational materials, and as we learned about this year, cover the costs of our new administrative requirements.

More good news:

During the pandemic I took advantage of the opportunity to do meetings by zoom, and conferred with some members of the advocacy department of the Canadian National Institute for the Blind, in developing some educational material specifically about the different types of white canes.

A first draft was sent out for feedback, and we plan to begin distribution of the latest version in October. Stay tuned!

So, after pretty much remaining dormant since the beginning of all the shut downs, the CEP is restarting public awareness efforts.

You could give us a boost by going to the video page and sharing something from there – every bit helps!

 

Thank you!

Years ago, there was a public service announcement on tv. It was put out by an agency that provides services to blind people. I believe it was inspired by my requests for them to help with the awareness effort for the checkered eye symbol for low vision. One of their reasons for not helping was that there is a symbol for blindness already; the white cane. I acknowledged that and told them that I use one myself but that it’s not always the best option to communicate my blindness. Few people understand that white canes may be used by people with many levels of blindness, not just completely blind people, so while improving understanding of the cane, let’s also inform people about the wearable blindness symbol, the checkered eye. They declined to help with checkered eye awareness but came up with a series of PSAs to inform people that “not all people who look blind are completely blind”.

In one of the spots, a young boy waves his hands mockingly in front of the face of a man carrying a white cane.

Here’s my fantasy of what I’d do if a kid did that to me.

Description: I, a slightly smaller than average adult female, walk up to an intersection where two young men are leaning on the stop sign. I am carrying my white ID cane and I stop. One of the young men elbows his friend as if to say “watch this” then gets all up in my face waving his hands around.

I give him a swift left hook and he lands face down on the ground.

YOU’RE GOING THE WRONG WAY! ARE YOU BLIND!

Image description: an angry exasperated emoji face.

There are signs posted everywhere. There are arrows on the floor plainly indicating which way you can go. Footprint stickers show where you can stand. Everyone can see that. Or can they?

 

No. The simple answer is that not everyone can see the” new rules” signs, lane indicators, and marks to show where you can stand.

Things have changed and things are potentially risky to your health. This ramps up the overall tension so that sometimes the most even-tempered person may respond to another person’s error with exasperation.

 

For those of us anywhere on the blindness spectrum the experience of going out into society can be more stressful than for that of the average-sighted person. And that was before the COVID-19 complications. Many of us have assistance to manage living with the new procedures, and many do not. If you live independently and do not have access to support, you have to go out and take care of business yourself.

 

With this in mind, I’d like to remind everyone, and particularly those who work with the public, that there is a spectrum of blindness and both the white cane and the wearable checkered eye symbol indicate that their user is on that spectrum.

To sum up:

- there are new rules posted

- blind people can’t see the signs

- check for the checkered eye, watch for white canes and please have some understanding.

 

 

 

 

Each year during Canada’s White Cane Week the Checkered Eye Project does a little extra awareness boost. Our main focus is of course ensuring that as many people as possible understand that if they see someone wearing the checkered eye symbol, it means that person is communicating the fact that they are on the blindness spectrum. We also include information about the different kinds of white canes used by people on the blindness spectrum, and that’s not just because the occasion is called “White Cane Week”, it’s part of our ongoing awareness effort.

 

 

Well this year is 20 20. Many people are using references to this number as if it applies to vision.: Let’s focus, it’s 20 20, 20 20 a year of vision, watch out it’s 20 20…

You can likely imagine that I saw this coming for a few years. I figured I should be doing something big in the year 2020 and started working on some promo items last year. I wasn’t sure how I’d use them so they were designed in a way that they’d be useful on an ongoing basis.

 

I worked with my trusty graphics guy and came up with some posters that I think are really cool. 

I was very excited to show people the accessible versions of the posters and some inexpensive gadgets that businesses could use to make existing information accessible.  

I also enlisted a few friends to help me host an awareness event, possibly a series of them, and decided to call it a “Drop In”. I came up with some activities people can try doing without sight or with impaired sight, arranged a room for the event, and was ready to have our last meeting to finalize room set up, when something very sad happened.

 

My brother Steve passed away suddenly.

 

I cancelled the event and went to spend some time with my family.

 

The drop in had been scheduled to take place on the last day of white cane week which is the first week of February. This can be a terrible time to plan events where I live, in an area referred to as the snow belt. A silver lining is glimmering slightly as a postponement could mean better likelihood of people being interested in coming out to an event.

 

Steve is actually prominently featured on one of the promotional posters I’d created for the 2020 drop in. It’s a poster that states “People on the blindness spectrum achieve. Accessibility helps make things happen.” The poster was supposed to have a photo of a few individuals and either their logo or a depiction of them doing something cool. I’d requested these images from a few people on the spectrum who are achieving impressive stuff, one of whom was Steve. I had a photo of one of his stunning landscape paintings and a great one of him taking pictures in his studio set up. He’s definitely one of the people I know who demonstrated the point that, if all you know about a person is that they have a disability, you don’t know what they can or can’t do.

However, the only images that were of adequate resolution to enlarge were the ones I had of Steve.

The “blind people achieve” poster had been the final one worked on and I was now going to have to ask for replacement photos in a rush. I decided not to do that and by this time, I was cutting it close, so, in order to have the poster produced on time, I went ahead with just Steve’s images and some open space. I planned to print the other images separately and add those people later, possibly different ones each time I do the event.

So, due to the sad event in late January, and the result of a seemingly insignificant organizational shortcoming, the first drop in will be scheduled during better travelling weather, and my brother Steve will forever be featured on a poster involved in contributing to the greater good of people on the blindness spectrum. I’m thinking of calling the event The Steve Kennedy Memorial Checkered Eye Drop In. Or maybe I’ll save that title for when I do the one with the live music called The Checkered Eye Ball! He was a music fan too. We’ll see!

In a brain storming session for some awareness posters related to the checkered eye, it was suggested that we address the question: okay, now I know what it means, what do I do?

My immediate reaction was “nothing”. Wearing a checkered eye or carrying an I.D. cane is not supposed to elicit action from onlookers. It is to add the little bit of information “I can’t see well”. The cane is mostly to communicate this to drivers and the wearable checkered eye is to inform people I’m engaging with face to face.

The whole idea that a disability necessarily indicates “help” is needed drives me nuts. This is not to say that help is never needed, but the idea that having a disability means that help is always needed rubs me the wrong way.

I had to agree however, that people do want to know “how does this effect me”. So I have begun a list of bullet points under the heading “What can sighted people do”.

- Help spread awareness of the symbol.

- Businesses train staff to “check for the checkered eye”

- If it seems the person needs assistance, ask first.

- In restaurants, offer accessible menus such as large print, braille, electronic.

- Common courtesy is often all that is needed. Sensitivity to special needs is always appreciated.

Can you suggest other points?

Comment here or e-mail info@checkeredeye.com.

 

 

I'm going to pull a 60 ton plane across the tarmac by myself!

I'm getting a bit cranky about how slow this awareness effort is going so I've decided to ramp things up a bit.  Here's a press release I've been sending out in hopes of catching some attention:

Partially sighted Grandmother to single handedly pull 60 ton plane for Sight.

Orbis, with their flying eye hospital has an annual fund raiser involving teams pulling a giant cargo plane. The Checkered Eye Project educates about the blindness spectrum and the wearable symbol for partial blindness, the checkered eye. Both need public awareness so checkered eye creator Libby Thaw plans to single handedly pull the 60-ton jet to raise funds and understanding.

Like moving this big plane, informing the entire world about what the checkered eye symbol means is an enormous task. I’ve been working at it for over 18 years and I’m not getting any younger. Since It’s still not widely recognized I’m trying this crazy stunt to boost awareness.

On Sunday June 9th, at Toronto’s Pearson International Airport, groups of up to 20 people will gather to see if they can pull a 60 ton jet 20 feet for fund raising team building and fun. Libby will be a team of one.

Here's a link to my fundraising page: https://orbiscan.akaraisin.com/pledge/Team/Home.aspx…

So that press release has resulted in a few local outlets interviewing me so far.  I hope some more will show up at the event. 

Regardless of professional camera crews, I will have some photos and videos taken on the big day and share that later.  

I've already got some pics and videos of me "in training".

Holly and Frank at Fitness corner graciously allowwed me to use their facility and were a lot of fun at the shoot.

At the plane pull I plan to wear a very flamboyant outfit and mingle around at least informing the people there about the checkered eye. 

I'm thrilled to say that I've received what I think is a substantial amount of donations from the bit of press and social media.  It's quite heart warming.  I've also had an increase in traffic on the Checkered Eye Project website recently so I think this little awareness booster has been a success before I even go the the airport!

I'm looking forward to wearing my checkered outfit, complete with checkered high heels and outrageous hat, and talking to lots of people!   

A very moving day!

I did it!  I moved the plane!

I’m looking at it much like a metaphor for the Checkered Eye Project. I set out to do it on my own, and with the help of some generous individuals, things got rolling!

My turn to pull the plane was the last on the schedule so I had lots of time to mingle and enlist assistants. This was the most moving part of the day because every single person I asked to help said yes. I’d tell them about the checkered eye and that I was doing this to improve awareness. They said yes to both my request to help spread the word and to help me move the plane on the off chance that I couldn’t do it on my own.

I enlisted such great help from the crowd that once the blocks were off the wheels, that plane was moving fast! It was over in seconds! Then there were hugs and high fives and the announcer even let me on the mic to have a bit of a say about the white cane and the checkered eye.

All in all, it was a wonderful day for me and the Checkered Eye Project. Even though I didn’t catch the eye of any journalists, I had a great time meeting new people, informing them about the checkered eye, and getting to wear some custom couture!!

In Ontario we have a law called the Accessibility for Ontarians with Disabilities Act or AODA. Part of what is now required of businesses in Ontario is to have a policy stating how they will manage accessibility issues.

As a person with a vision disability access to information is a major challenge for me.

There is a lot of information squeezed onto many drug containers, prescription or not. Picture the size of the font on your average bottle of headache pills. Does it give you a headache?

Once I was aware that drug stores are supposed to have some process in place by which they would make the information they distribute accessible, I began requesting accessible information on my prescriptions.

After what I would call a lot of “the runaround”, I made a hard copy of what I’d like on the prescription I get every 3 months, and brought it up to show my pharmacist. I was assured that there had been a note entered on my file and things should meet my request from then on. That was in January of 2017. They have never succeeded so far. Each time I pick up my meds, I check it and see that they haven’t done anything differently. Each time they go back and see that yes there is a note on my file. And each time they do it while I wait.

I have brought them up literature about the various methods by which prescriptions can be rendered accessible. One pharmacist said it was really hard to do what I was asking and also let me know in a “quit bugging me” kind of way that I was the only one asking for this.

I called another drug store in town to find out what they do. On the first call the pharmacist seemed completely unaware of what I was getting at. She told me she’d look into it and get back to me. I called back a few days later and she told me they use a system by which they send the information to a company called “Scriptalk” and they send the customer a device that can read the specialized tag they put on their bottle. Fantastic. When I asked a few questions about this she said they’d never done it for anyone so far. I let her know that they are required by the AODA to make it known to the public that they provide this service.

I’d switch to that pharmacy but mine is within walking distance.

I’m doing my best to respect the fact that these people are trying to run a business and that I am making requests that are unusual. I am speaking for myself and those who may not be as comfortable with voicing their needs. I am working at being polite about it.

I heard a quote the other day “Nothing changes till someone’s an asshole about it”. Ihope that’s not always true.

On Sunday, May 6th, 2018,I had a ball at the first ever Checkered Eye Ball! Five different bands performed and kept everyone grooving. People were interested in the blindness simulations. The Old Nick, a downtown Toronto bar where we held the event, had a busier than usual Sunday, and the Checkered Eye Project told some more folks that people wearing the checkered eye symbol are on the blindness spectrum.

We gave away and sold some items that are not only very cool, they help inform others about what the symbol means. My favorites of these items are the "smashed checkers" t-shirts and the "Blindness is a Spectrum" t-shirts.  I also like the coasters very much.

We had 2 types of blindness simulations: low tech and high tech.  The low tech ones were glasses with the lenses obscured in various ways to depict different eye conditions.  I've noticed however, that depicting a central blind spot with glasses is not likely to give an acurate impression to peopl with average sight, as they will naturally "look around" the spot we put on the lenses.  So, I had a computer simulation devised, using eye tracking hardware.  This is way more "freaky" according to the average sighted people who tried it, and found that the blind spot followed there gaze whereever they placed it.  

I personally enjoyed chatting with all the generous people who contributed to the days success, and of course putting on an over the top stage outfit and singing some jazzy little numbers!

There will be more Checkered Eye Balls so stay tuned for one near you!

 

• 
• 
• 
• 

Today for the first time ever I walked uptown and back carrying my white ID cane the whole time.  I’ve had one for many years and used it lots when I’m travelling  on my own but never here in my home town.  I still don’t need it to feel my way around but since my sight has deteriorated a bit recently and I’ve been having a bit more trouble determining whether or not there is a car coming, I decided it’s safer to use it than not. The gorgeous sunshine made the idea of a walk very appealing but it also makes it difficult for me to see.

A few months ago I scrapped the quick and convenient transport of my bicycle, unless of course I’m taking a particularly safe route and the lighting is just right, and of course it’s not rush minute here in teeny weeny Port Elgin. So today when I had a few errands to run and my driver was not available, I took out my little traffic safety beacon and headed out on foot.

Actually, I second guessed my decision several times before I left the house. It all happened within the few minutes it took to put on my coat and shoes; maybe I’ll leave it in my purse till I’m walking back with the sun in my eyes…but no, there’s that trouble spot right up the block…well I can just get it out then…but sometimes a situation arises unexpectedly when I wish I had it in my hand… okay, I’m getting it out now and keeping it out!

So that’s what I did.  It was fine.  Nobody pointed and laughed.  Nobody called me a faker when I looked at my watch.  Oh yeah but there was that girl in the bank who looked at my cane and asked if I was going to wack people.  I think she was intellectually challenged so I said no and then asked her if she knew what the cane meant.  She said no so I told her it means I can’t see well, pointed to my checkered eye and told her it means the same thing.  She said “you should have a dog” and walked away!  I irritated myself for a second and then just chuckled.  What can you do!?.

All in all, it was a good experience.  I didn’t feel self-conscious and I did feel safer.  It was the right thing to do today.

 Last week I got a call from an inspiring lady.    Leanne called to order some checkered eyes for a friend.  He has low vision and doesn’t use a cane for mobility so, like me, he is often mistaken as fully sighted.  She said her friend looks a bit like a rough character even though he is a real sweetheart.  She said she’s pretty sure people assume he’s drunk or on something if he stumbles in public.  She was heartbroken that he had fallen recently and not a single person offered him a hand.  Leanne mentioned that her friend doesn’t have a lot of money so I offered to send his order at no charge.  Leanne wouldn’t hear of it, she insisted on paying; she wants to help with our awareness effort. 

She was also more than a bit upset with the Canadian National Institute for the Blind (CNIB).  She said she had spoken to three different people there and no one would tell her anything about how to find checkered eyes.    I have called many of their offices to give them the checkered eye Project’s phone number and web address, and also asked if they could make this information available to all front line contact people.  I think this makes sense since people naturally assume the checkered eye is a CNIB project.  However, I was told that they wouldn’t make this information available to their info line staff as it isn’t one of their products or services.

Fortunately for Leanne’s friend she persisted and found the checkered eye website.  She also has offered to help him inform people in his community about the checkered eye.  I always send pamphlets and info cards with all mail orders to help checkered eye users do just that.  The symbol works best when people are already aware of it and its meaning so each user can bring information to friends and family and to the businesses they frequent.  That way those of us who use it are pioneers and will make the checkered eye more effective for those who follow.

Hats off to Leanne and people like her who take care of their own and do what they can for the greater good.

• 

I glanced through my phone log for the month of October and found there was quite a bit of activity there.

I made 3 custom orders: a tee shirt with checkered eyes on the front and back, a laminated 6 inch checkered eye to be attached to a walker, and a lanyard style checkered eye.

I was contacted by 2 low vision support groups: one ultimately seemed a bit dismissive and the other placed a huge order.  I gave them the wholesale price of course!

I was approached by a CNIB staff member who is very supportive of the checkered eye and is trying to get the organization more involved.  I contacted some of the CNIB who have been supportive in the past and connected them with this new enthusiast.  We'll have to wait and see what happens with that - well, maybe with a bit of prodding here and there!

A lady in California, who wrote and published a self-help type of book about living with low vision, wants to put the checkered eye on the cover of her upcoming re-issue.  We have been in discussions about that.  I find that very exciting.

One of the custom orders I made this month was requested by a fellow in North Carolina who communicates with me through sign language interpreters – by phone!  He uses some kind of video calling, contacts an interpretation service, they call me, and we have a discussion that way – so cool!

Lots of threads to keep pulling…

 

 

“Blog” is a shortened version of the term “web log”.  To me a log is a record of what happened when. I keep a log of all checkered eye phone calls for example, containing dates, phone numbers, and details of the conversations.  I’m noticing that the common use of the term log in the contemporary word blog is different.  This is why I have felt like I should choose a topic that is relevant to the Checkered Eye Project (CEP) and write a little essay or article each month. 

I think writing stuff like that is fine however I think I will go more toward the roots of the word blog and do a bit of simply logging what’s been going on.

Some of the entries may be brief like: All the CEP did this month was send orders, including one for a custom t-shirt bearing the checkered eye, had a few conversations with an enthusiastic supporter of the CEP who works for CNIB, and got the Mount Forest Chamber of Commerce to publish a blurb.  Some might be even more brief but really exciting like: This month I was invited to a face to face meeting with the Senior Director of Health and Wellness Promotion at Loblaws Company Limited where she agreed to come up with a “communication” regarding the checkered eye and its meaning for distribution in 2016.

So, sometimes I may still write an essay.  Other times I’ll record the CEP activities of the month.  You never know, I may still post a photo or two.

In case you’re wondering, all of the above noted CEP activities did happen in September 2015.

Beautiful but hazardous for blind people

 

I was walking along the main street in my little town the other day and encountered a tall gentleman using a mobility cane.  Being familiar with the surroundings I wanted to caution him about the hanging flower baskets.  Not all but some of them are directly over the sidewalks and as the season goes on they hang lower and lower. I introduced myself and mentioned that I’m on the town’s accessibility advisory committee and asked if he had encountered any of the low hanging flowers.  He said that they hadn’t caused him any difficulty.

As we chatted I learned that his name was Bruce and that he had lost a significant amount of vision only a year and a half ago and that he and I have very different visual impairments.  He has only central vision and I have only peripheral. 

So for Bruce obstacles that protrude into walkways or that overhang them can be particularly hazardous.  When a person uses a mobility cane, it only detects things on or very near the ground.  Overhead baskets, awnings, and signage are often undetectable and can cause injury. 

So before we parted I also warned Bruce about an outdoor patio nearby, where the sun umbrellas extend outside their fenced off area, and were likely at about eye level for him.  I had gone into this particular restaurant and explained this hazard to one of their managers but the umbrellas remain in the same location and height.

 

I understand how it would not occur to many people that these types of things would be a problem for a blind person.  Fewer than three percent of Canadians have a vision disability so we can’t expect everyone else to know what we need or what causes us difficulty.  Speaking up can help.  I get a bit cranky when I feel like I might have to throw myself on the ground and kick and scream, and even then I may not get results.

 

Oh well, the kicking and screaming will continue!

Any time I travel alone on an airline I always call ahead to request assistance and I always have my white ID cane in hand when I arrive.  I only carry the cane so people recognize my blindness, as it is not apparent. It usually serves its intended purpose however, once people notice that I can see quite a bit, the cane as a symbol sometimes seems to lose its validity.

On my recent trip, since carrying the cane along with luggage can be a challenge, I decided to try going without it. 

So when I called to inform the airline that I’m a disabled traveler and would need   assistance, I told them that I don’t use a white cane but that I wear a checkered eye symbol instead.  I informed them that this was a wearable symbol for low vision and that they could see it at checkeredeye.com. 

It worked! 

Since I had made arrangements for assistance by phone there was no need to make explanations to the service personnel once we met.  I took each opportunity to ask these staff members if they already knew the checkered eye and to my delight, some of them did. 

So the checkered eye was as effective as the ID cane in regards to the assistive staff.  The only time I used the ID cane was when, after an assistant had shown me where the ladies room was and I told her I could find my way back to the waiting area, I had it in hand so the other travelers would allow me back into the “special” seating area without explanation.  I was very glad I had the white cane for that situation because it was a very crowded time and people had moved into the area where we disabled travelers had been placed, including into my seat.  As soon as they saw me with my cane they very politely excused themselves.  Phew!

I am now reaching out to cruise lines in hopes that they also will accept checkered eye information to distribute to their staff and be able to add that bit of understanding to customer care for their demographic which likely has a relatively high percentage of people with low vision.  Fingers crossed!

When my sister moved from Ontario to British Columbia, she shipped some of her belongings and drove herself to the destination in Langly.  Since it would have been a long and lonely drive I decided to accompany her.  

There was only one place we visited that provided their menu in accessible formats for people with visual impairment; The Water Tower Inn in Sault Ste. Marie, Ontario.  I alwasy ask for a large print version and I'm very happy that some places now provide them.

 

Along the way I delivered checkered eye information and was delighted whenever I met someone who already knew about the new symbol for low vision.   I handed out lots of my bsuness card size "booster cards" and put up some posters. 

Here are a few photos of places where I was able to put up our new poster.

Next month I'll tell you about the plane ride home...

I met a fellow recently who said he heard that the checkered eye had been featured on Oprah!  I’m pretty sure I would have known about that, being the head honcho of operations at the international Checkered Eye Project headquarters here in my empty nest!  So I happen to know that this fellow was mistaken. 

I told him so at the time and also mentioned that I’ve been trying to get a hold of Ms. Winfrey for years.  I wrote to her through the show she did for 25 years, but not since she finished that particular project.  I also made a video about 10 years ago, part of which is on Youtube.

After persistent requests, Canadian comedian Rick Mercer taped a promo for The CEP in 2013.

 Among many  attempts to enlist the help of famous people, I also did a video of a song I wrote for a certain Canadian radio show host who has fallen into scandal.  I tried contacting Oprah and others because I figure that people who have some degree of celebrity have easier access to the attention of the masses, and I just need a little bit of that!   Maybe it’s time to try to get a hold of a different celebrity; it’s kind of fun doing the productions and you never know w

I am struggling again with trying to convince a chamber of commerce that the information I’m asking them to make available to their members will benefit them and their customers with low vision.  If one of the services that this chamber provides is information distribution, and they charge a fee for this, why should they do it for free for the Checkered Eye Project?  Does it really serve “the greater good”?  Well of course I think so but I’m not doing so well at convincing some people.

I feel like I’m offering a “tip” that can be of good use, however, in the request to pass it along, I guess I’m asking something of others.  Regardless of my intention I am asking for a favor; a favor that is “help me do something helpful”.

The biggest problem is proving that I’m not a scammer.  We hear so often about cheaters that it’s understandable to find skepticism when you want to offer something, even when the something is as seemingly harmless as information.

Still working on it…

My vision’s not the clearest

But if I get really close to my dearest

I can see his facial expression,

Usually meaning “too close Lib” I’m guessin’!

And shopping can sometimes be taxing,

Not an action I choose for relaxing.

But browsing for purses I’ll work through

Reading price is the tough part for me to do

So the trusty wee loupe in my pocket

Ensures that this job I will rock it!

Then when I am out of the store

Dodging traffic is sometimes a chore

So my white cane ensures I feel serene

While I stand and await a “fresh green”

Most fellow pedestrians have sight

And may figure I can’t see the light

So I probably won’t risk my safety

Just to try not to look like a dumb lady.

Then once I am safely indoors

And purses attract me some more

If my white cane is folded away

And I choose one and then go to pay

If I need help and the cashier asks why

That’s when I point out my checkered eye.

If he doesn’t know I’ll tell him what it means

And then once again I’m serene.

I recently started ice skating for a bit of exercise.  My hubby Ray and I go to the one hour “older adult skate” a few times a week.  It’s a good thing they don’t call it “mature adult skate” because Ray’s such a goofball they’d never let him in for that.

Being your average Canadian girl, I skated as a kid, mostly on outdoor rinks and frozen ponds.  My Dad would make a rink in our backyard too so I even played a bit of hockey with the family and neighborhood kids.  I can’t recall exactly the circumstances but I’m pretty sure I did a bit of figure skating; it might have been in phys. ed. class.  What I’m saying is that I’m not a complete beginner at skating.

I’ve been having a bit of knee trouble lately so before going I just thought I’d want to be super careful not to wipe out or even have a near wipe out.  I didn’t want to twist my knee or bang it up at all.   I was glad I wouldn’t have any little kids to avoid and felt confident that I’d be able to see my way around and any slow moving skaters I might have to maneuver past. 

You know what I didn’t expect to have trouble seeing?  My laces!  Obviously I haven’t been skating since my sight has diminished to the point where such detail is lost for me. So I’d just yank on the laces I’d get a hold of, figure if I was tightening or not, regrip and keep going.  Getting just one hook at a time on the upper part of the boot, or the next one in order was a crap shoot.  I actually worked up a bit of a sweat fastening up the blades!  And since I was being so careful watching my surroundings as I skated, I never bothered glancing down to see if the laces were coming loose – of course I wouldn’t have been able to see that, would I!  So I was easily able to keep my mind from wandering off to my “to do” list or anything in the past or future because I was making sure to notice my present surroundings and whether or not my skates felt like they were still on tight!  It makes for a very meditative hour.

Here it is, the party season and yup it’s me, I’m the party pooper.  Not a complete party pooper though, I love the feasting and gathering of the month of December, and I know I mentioned in last December’s blog post that there are lots of joys of the season that I like and that don’t require acute eyesight, but I’m going to talk about some of the seasonal things that I find less pleasurable.

 

Parades and most greeting cards are inaccessible to me. When I had little kids I certainly enjoyed their excitement at watching festive floats go by, but I generally wasn’t able to see details or point things out to them. All I will say about greeting cards is this: my friend Pam gave me a stellar example for my 50th birthday.  It was an entire sheet of Bristol board with suitably large text and therefore it was easily accessible for me.  Thanks Pammy!

 

Some who know me well know I don’t like candles.  For the same reason I don’t like camp fires or fireworks either.  Here’s why: If you look right at a camera when the flash goes off, You know how the flash creates a little blind spot for just a sec?  Well average sighted folks may not notice this but things like candle flames; little bits of concentrated brightness, create temporary blind spots in peripheral vision also. Since I only have peripheral vision, these extra blind spots make me blinder than usual.  I find that a nuisance.

 

Christmas trees are not as bad, usually!

 

So I’m actually not a party pooper, I just have trouble enjoying some possible elements of various parties.

 

And now to show I’m not a total Scrooge, a poem.  This was inspired by the “post childhood experience” of December and the potential diverse ways to participate in what I like to call the season of joyous excess.

 

For children there’s the mystery of Santa

Or the wonder of what gifts eight nights may bring

Now I’m in on lots of secrets

It has started me to thinking:

How will I delight myself in years to be?

 

If you’re not Jewish or a Christian in this season,

You still might get some time off work without big reasons

Do not fret I’ve got a theory

I’ve been pondering this query.

There are other ways to view this time of year:

 

It’s Midway!

 

Midway through the longest nights

When there’s lots of snow and ice

Midway through the time when days are very short

 

So if you’re cold put on a sweater

And pretty lights make darkness better

And generosity can help us all feel good

 

We’re giving!

 

I might enjoy the shopping frenzy

I willl share my plenty plenty

And I’ll get a little fat from sweet excess.

 

I’d like to learn the things you do

And I’ll show you my stuff too

And we’ll all have food and drink and fancy dress.

 

It’s Festive!

 

Some will pray and some will visit

For some it’s sacred, some it isn’t

For those down south it’s not short days and freezing weather.

 

So if we like it or we don’t

It is a chance for us to note

That this time does not go on and on forever.

 

It’s Present!

 

Midway through the longest nights

Midway through the pretty lights

Midway through the time when darkness brings us down

 

So if we like it or we don’t

It’s quite important that we note

That our time does not go on and on forever.

 

Let’s party!

The phone number for the CEP is listed on the website and any calls that come in come directly to me.  I am delighted to have the time to chat with folks who call for info about ordering the checkered eye pins or who want to request literature.  We often end up chatting at length about our shared experiences as people with a hidden disability.  Most often my callers express the frustration of being mistaken as fully sighted when requesting assistance.  This is an experience I’ve had many times myself, so I’m thrilled to tell you that on my trip to Ottawa this past July, the majority of retail staff I queried was familiar with the meaning of the checkered eye.  Yup, the majority!  Now of course I didn’t ask every one, and sometimes I was carrying my white cane so I got the sensitive assistance I’d request, but I got a great lift whenever I’d ask a stranger if they knew the symbol and the answer was “yes”!

Okay so that’s the up side of this blog entry.

Upon returning from my little vacation in our nation’s capital, I took a seat at my desk to review telephone messages.  One was from an eye doctor in London, Ontario, who last year had requested a supply of checkered eyes to sell from his office.  He had decided that since he wasn’t selling many of them, he’d return his remaining stock and discontinue making them available from his office.  I find this disappointing.  Not only will the CEP lose an outlet, but we’ll lose the little credibility boost we get by having this eye doctor on our “where to get one” page.  We have several drug stores and one other optometrist’s office so that will do for now.

Neither of these bits of news is all that significant I suppose.  They are ice chips in the slushy that is the Checkered Eye Project: sweet and refreshing at times, if it goes the wrong way it can make me choke, and too much all at once can give me brain freeze!

 

Since I’m a fan of Halloween and costumes and that’s on my mind lately, I’ll start off this piece with a mention of the blind superhero Daredevil.  I still haven’t come up with just the right way to make myself a Daredevil costume, but I’m working on it.  As the story goes he loses his sight in an accident where he is exposed to a radioactive substance, which ends up heightening his other senses.  His enhanced senses become his superpowers.

BElow is an image of Daredevil.  It appears that his white cane turns into either a whip or a rope.  Very impressive!

While average sighted folk may find it amazing that things can be done sightlessly, I’ve heard some blind people get a bit cranky about others marveling at how they carry on at all living with what seems to be a devastating hardship.  I’ve heard real annoyance expressed after someone was commended for merely walking across the street. I can understand how that might get bothersome if it happens day in and day out.  Personally I kind of like it when people tell me how amazing they think I am!

 

Along the same lines, sensitivity training that involves blindfolding people and getting them to attempt various tasks without sight or any training on how to do things without sight, may give the wrong impression.  It may give the feeling of helplessness and that blind people are not able to do much without help, unless they are extraordinarily talented.  This may make them less likely to consider hiring a blind person.

 

 

I can see the merits of trying things blindfolded in order to figure out what changes might make them more user friendly for people with impaired or no sight. However if input is also gained by consulting and observing people who are skilled at functioning without vision, that would give a more balanced impression of the “blind experience”.

Involvement with the International Standards Organization (ISO)

 

In early 2014, when the Ontario government was inviting feedback regarding the customer service segment of the Accessibility for Ontarians with Disabilities Act (AODA), I asked some Checkered Eye Project (CEP) supporters to add a specific point.  The point I hoped to convey was that since the AODA is specific in its requirement that people who provide customer service understand certain tools, such as service animals, we think they should also be required to recognize any symbols whose purpose is to communicate a hidden disability, such as the checkered eye and the various types of white canes.

 

When one of the CEP supporters provided her feedback, it was misunderstood as a request for the government to come up with a symbol for low vision.  She sent me the e-mail she’d received so I could address it directly.  After clarifying the message for this person, I focused on a suggestion he had offered: he suggested she contact the International Standards Organization (ISO) with the goal in mind of implementing a symbol for low vision. The fact that a person familiar with governmental procedures thought that contacting the ISO would be a useful course of action excited me.

 

So I got busy researching exactly what the ISO is and what they do.  Very simply, they are a group that develops standards that are voluntarily adhered to, with the intent of facilitating international health, safety, and trade.  The Standards Council of Canada (SCC) is a part of the ISO and has various committees.  I discovered that my timing was fortuitous as the ISO was in the process of reviewing international standards for graphical symbols.  The people with whom I was discussing this issue suggested that to present the checkered eye for consideration, I’d have to be involved in the process.

So the SCC has a technical committee (TC) involved with the graphical symbols review and I asked how to become a part of that technical committee.  Still following?

 

I was forwarded some online courses which I eagerly studied.  They were not very accessible to me as they were presented in power point formats which my software couldn’t read aloud.  Fortunately they were brief and I could enlarge them enough to read visually.  At the end of each segment I was e-mailed a printable certificate; seemed a bit juvenile but I liked it!

 

The next step was to apply for membership.  I was asked to submit a completed form along with my CV.  After discovering that CV was another term for resume, I felt a bit stumped.  I’ve been a full time Mom for over 2 decades and my work history previous to that was largely in unskilled clerical work and restaurants.  

I e-mailed my contact at ISO who thanked me for my honesty and said he’d look into this.  He e-mailed me back to suggest I write a letter reflecting what I’d told him and he’d take it to the committee.  About a week later I got an e-mail welcoming me to the SMC/ISO/TC145SC1!  Yippee!

 

My duties as a committee member entailed reading.  Yup more reading.  I was a bit concerned about being able to keep up until what I think was my second document.  This particular document outlined the requirements any graphical symbol would have to meet in order to be considered an international standard.  It would have to be recognized a percentage of the time and in a number of countries, that is more like the goal the CEP is striving for than a status it already meets. 

 

So since my whole point in participating with this ISO TC was to gain recognition for the checkered eye, it seemed that my involvement was mistakenly undertaken.

 

My contacts were very understanding and gracious when I let them know I’d be stepping down. 

 

All in all it was an interesting experience.  I learned a bit about the complexities of governing something as vast as global trade and how specific the language must be for such a process.  I enjoyed getting the little “ticky marks” for completing the brief courses I took, and I successfully applied for a position in the International Standards Organization!  Well actually it was a sub-committee to the technical committee of a mirror committee to the International Standards Organization but hey, that’s something!

This month’s blog is from Lisa Bonet, a health-writer whose family member had vision trouble due to a condition they thouhght was unrelated to eye health.  The article she contributed contains several links, some of which contain a bit more advertising than I like, but they all direct to relevant information so I’ve left them in. 

Enjoy.

When we think about our eyes and their health, we don’t necessarily tend to assume things like our body weight, or other factors like drinking and smoking as being something that would affect them. However, poor lifestyle choices – not all necessarily related to diet can actually have a detrimental effect on your vision and the overall well-being of your eyes. For further explanation on how you can help protect your visual health with sensible living, please read the article below which offers practical advice on eye care and how to protect yourself against the potential for problems to develop.

Poor Lifestyle Choices Damage Your Vision Too

Although you probably take your vision for granted, it might be time to take better care of your eyes, as the number of people in the US who suffer from poor eyesight that isn’t correctable with lenses is on the increase. While researchers believe the increasing number of eye problems is closely linked to the growing number of cases of type 2 diabetes, which when poorly controlled is a common cause of blindness, diabetes isn’t the only factor related to lifestyle that can put your eye health at risk. You’re no doubt already familiar with the need to wear sunglasses to protect your eyes from UV light and the development of cataracts, but there are various other steps you can take to safeguard your eye health. In fact, you may not realize that lifestyle choices linked to chronic health problems are also bad news for your eyesight.

Obesity

Not many people have heard of it, but around 100,000 people suffer from idiopathic intracranial hypertension in the US, and what most of them have in common is that they are significantly overweight. Typical symptoms include blind spots, poor vision in the periphery, double vision and temporary loss of sight. However, as many as 10% of people with the condition lose their sight permanently. While drugs used in the treatment of glaucoma show promise for managing idiopathic intracranial hypertension, losing as little as 5% of your body weight can improve symptoms, and avoiding excess weight gain can prevent the problem arising from the outset.

Smoking

Age-related macular degeneration is a leading cause of blindness in older adults and while advancing age and a family history of the disease is most commonly associated with its development, whether you smoke also influences your risk of this eye condition. Indeed, research indicates that smoking makes you more than twice as likely to develop age-related macular degeneration as a non-smoker, with recent investigations showing that tar and other components of cigarette smoke are deposited in the retina. If you already smoke, this is yet another reason to encourage you to quit.

Heavy Drinking

While you probably don’t imagine that the amount you drink could harm your eyes, there is evidence to suggest this is the case. Current alcohol recommendations advise that women should drink no more than 7 drinks over the week and men at most 14 drinks, with a study showing that having more than 2 alcoholic drinks daily makes you significantly more likely to need cataract surgery. However, there is no need to avoid alcohol altogether, as the same study found that drinking within recommended limits poses a lower risk of cataracts than not drinking at all.

Poor Intake of Micronutrients

Although it is often said that eating carrots regularly aids your vision thanks to their beta-carotene content, this isn’t the only nutrient that you need for good eyesight. Your body also needs a daily supply of lutein, zeaxanthin, vitamin C, vitamin E, zinc and omega-3 fatty acids, as they all have different roles in promoting the health of your eyes. As these nutrients are provided by a diverse range of foods, from oily fish for omega-3 fatty acids to green and orange fruit and vegetables for lutein, it is essential that you eat a balanced diet every day, including all food groups. Failure to do so can leave you short on micronutrients, which in the long-term can impair your vision. While a balanced micronutrient supplement offers a safety net, the same benefits may not be gained as obtaining these vitamins and minerals naturally from foods.

Inactivity

Regular exercise doesn’t simply keep your heart and lungs in good condition and help you to maintain a healthy weight, it may also offer protection against age-related macular degeneration. Even though this is still a relatively new area of research, scientists demonstrated in animal studies that an hour of exercise on 5 days of the week protected the structure and function of the retina when exposed to conditions likely to induce damage. Indeed, mice who exercised had twice as many functioning photoreceptors after exposure to bright light than the inactive mice did. Although studies in humans are needed to see whether an active lifestyle protects against retinal damage over time, with the range of health benefits already offered by physical activity, taking daily exercise is advisable.

Poor Sexual Health

Sexually transmitted infections don’t just infect your reproductive organs; they can affect your eye health as well. You may be aware that chlamydia and gonorrhea can cause pink eye, but did you know that it is also possible for herpes to infect your eyes as well? Although infections of herpes are sometimes asymptomatic, when it affects your eyes you may notice signs of conjunctivitis and tiny skin lesions around your eye. If it is your initial outbreak, you may also experience a fever, headache and swollen lymph nodes. Whatever your symptoms, it is important you seek medical advice, as if untreated herpes in the eye can damage your cornea and permanently affect your vision. Once you have the herpes virus, it can recur at any time, though minimizing stress, achieving a balance between rest and exercise, and eating a nutritious diet help to enhance your immune function to reduce the risk of further outbreaks. However, the best action is to protect yourself from STIs by practicing safe sex and taking a yearly STD check to confirm you are free from these infections.

David MacBrien is a long time friend of Checkered Eye Project Founder Libby THaw.  They worked together at a same day courier in downtown Toronto in the 1980s, and at least once a decade, celebrate their August birthdays together.

This photo depicts David playing an acoustic guitar.

My first encounter with the blind occurred when I was a fledgling guitar player in a Christian folk rock choir in the 60's. His name was Clint. Clint taught himself to play guitar overhand, which is an accomplishment on its own.

 

It was sort of a rite of passage when I was asked to take Clint into the concert for the first time. Aside from leading him past various patch chords, chairs , music stands and mic stands , it's important to remember that many of the churches we sang in were built when people were shorter. Clint, being a good six foot six, was always at risk of bumping his head. This gave me another dimension to worry about.

 

So once seated I thought, " What do I say to a blind guy?" Turns out, pretty much what you say to a sighted person. Clint and I developed this little joke, where I would whisper "cute girl looking at you 20 degrees left" and he would turn his head and wink.

 

I have found, though, that being funny can be be insensitive. I often open my mouth to change feet. Nobody likes being treated with pity but at the same time you can't ignore a disability. So where is that fine line?

 

Beats me! I just try to be kind and go from there.

This photo depicts me standing in fron of a stuffed moose on the porch of an old tourist shop.

Recently I’ve had some illustrations of how hard it is for people to be able to understand what I can or can’t see.

 

I took a road trip with my sister Sue in early June.  We drove from Thunder Bay to Sudbury.  Sue has taken this drive many times and she knows how beautiful the scenery is.  As we drove along and I frequently exclaimed  “oh look at that”, she told me that she’d been puzzling for weeks about how she’d be able to describe to me the gorgeous vistas we’d be encountering all along our way.  Clearly she didn’t think I’d be able to see them.

 

Before our trip Sue and I had been in Thunder Bay to attend her daughter Kara’s graduation ceremony at Lakehead University.  Our Mom had also attended the event.  Having all come from out of town, Mom, Sue, and I all stayed together in a hotel.  My Mom brought her tablet with her and was struggling to get it connected to the hotel’s internet.  I got out my little magnifying glass and, with considerable difficulty, managed to get her connected.  As the evening went along, she’d periodically hand the tablet to me in order for me to do something for her.  Clearly she’d forget that I can’t see it very well.

 

It seems like there were 2 or 3 instances within a few days when my son Sam noticed that I spotted a little tiny wee spec of something on the floor or on a counter. Each time he’d ask in amazement “Mom, how did you see that?”

 

So if you’re an average sighted person, don’t feel bad if you make an assumption about what someone can’t see and then they point it out to you!  And if you’re a person with low vision, be patient with people who forget you can’t see well or who think you can see even less than you can!

 

P.S. During the northern Ontario road trip, I saw a moose grazing at the side of the road!  Yup, they're huge!

I recently had an opportunity to tape a 30 minute segment on a health related talk show.  In the weeks before the taping I’d made myself abit nervous about it.  Which are the most important points?  How will I make sure to get to them all?  How will I get it to flow in a sequence that makes the most sense? I wrote many drafts of outlines to send to Carol Merton, the host of the show then finally, contacted her to ask if we could discuss it before the taping date.

Carol was very generous with her time and we had our telephone meeting on a weekend.

Carol let me know that her usual plan of action is to start from the beginning.  In the first 7 or 8 minutes of the show she goes through an introduction of the guest and the basics of the topic. 

This didn’t go with what I’d written!  I thought we’d talk about blindness in general at first, get to the white cane and how it had started off as a symbol only, then when I’d talk about how it’s no longer as well understood in its function as just a symbol, I’d segue into talking about the checkered eye.

So I decided to rewrite my outline to go along with Carol’s standard procedure.  After all, she’s the expert here.  Well actually, in our phone chat Carol had mentioned that I am the expert on the checkered eye…I had a light bulb moment: If we have a full 30 minutes to sit and talk about the checkered eye project, surely I can manage to get around to the most important points about it!

Again life reminded me to be present, do my best in the moment, and trust myself to deal with the outcome.  

 

The Checkered Eye Project is working to get some information to the world. We want people to understand that the checkered eye symbol indicates that its wearer has low vision.  We also want people with low vision to know this wearable symbol is an option for them, and how to get one if they want to try it.

Access to information has historically had major barriers for people with poor or no vision. Braille, audio formats, and adaptive features for computers have all helped quite a bit with that.

So I am now doing a lot of reading and writing.  This can be tough because the information, the tool with which I’m trying to improve one little thing for people with low vision, isn’t always accessible to me.  Then there are the situations when I am reading and writing in my capacity as a volunteer member of the local Accessibility Advisory Committee (AAC).  In that scenario I am commenting on safety issues for people with vision disabilities, and also access to information. 

On occasion the document I am asked to read is not accessible to me and my friend Tracey at the Municipal office is terrific for doing what she can until she has a version that’s accessible to me.

 

I’m no literary expert, but I think this fits the definition of ironic.

 

From Dictionary.com Irony: atechniqueofindicating,asthroughcharacterorplotdevelopment,anintentionorattitudeoppositetothat which isactuallyorostensiblystated.

 

So here I am doing my little part to help make the world more accessible to people with disabilities by doing something that my own disability makes difficult.  This was painfully (yes painfully) demonstrated lately when I was looking into adding my two cents to the review of the customer service segment of Ontario’s accessibility law, the Accessibility for Ontarians with Disabilities Act (AODA).  I’d like to make it clear that there are plenty of people with vision disabilities who use computers with adaptive software and are quite proficient at it.  I however am not one of those people.  What makes it worse just lately is that my set up is getting old and therefore it fails me quite regularly.

 

So I wanted to comment on a law.  In my opinion one should be familiar with something that one wishes to discuss.  So I read it.  I read it.  Such a short and simple sentence to describe the process of seeking, finding, attempting to read, failing, restarting my computer, trying again, quitting, going for a walk, trying again, throwing myself on the floor, blogging, trying again……..

 

Is it like the people with physical disabilities building the ramps? 

Dare mighty things?

 

Sometimes you need to conjure up a lot of gumption just to go to the corner store.  This is particularly relevant to people who are new to operating with reduced vision.

 

Due to recent goings on within my circle of acquaintances I have been reminded to take stock of what’s actually important to me.  What really matters? 

 

For a long time I’ve felt it was most important to “dare mighty things” as is outlined in a favorite quote of mine.  The same thing that is expressed by that song that says “if you get the choice to sit it out or dance I hope you dance”. 

 

I still do think those things are important.  I do think life is less regretful if you give things your best shot rather than choosing not to risk failure.

 

These days however I’m also noticing the importance of being able to be okay with the here and now that may or may not involve mighty things.  And the definition of mighty things can have great variation.

 

If you’ve been given a diagnosis that states you may have less than a year to live, do you get busy with your bucket list?  Sure.  If there’s stuff you’ve been planning or waiting on, now’s the time to go for it.  However, my thinking lately is that it’s even more important to be present for whatever’s going on RIGHT NOW.  If you are sitting out this dance, isn’t it best to take note of the music, the feel of your chair, the person with whom you are sitting?  How you are feeling about all that stuff?

 

I’ve noticed that some blind people find that they get great pats on the back for just walking down the street.  Some view this as pity.  Some take it as a kindness and feel good about it.  I can imagine that someone who knows nothing about living without sight might think it is a mighty thing you are doing.  Well, for some it is no big deal, for others it is a huge deal. Take a compliment!

 

Of course there is value in being daring sometimes in life, and it’s also important to be present for whatever is going on while it’s going on.  If you’re looking forward to the moment when you’ll be daring or back at moments where you were, you’re missing all the rest.

 

Here is the quote I mentioned earlier.

In the battle of life, it is not the critic who counts; nor the one who points out how the strong man stumbled, or where the doer of a deed could have done better.

The credit belongs to the person who is actually in the arena; whose face is marred by dust and sweat and blood, who strives valiantly; who errs and comes short again and again, because there is no effort without error and shortcoming; who does actually
strive to do deeds; who knows the great enthusiasms, the great devotion, spends oneself in a worthy cause; who at the best knows in the end the triumph of high achievement; and who at worst, if he or she fails, at least fails while daring greatly.

Far better it is to dare mighty things, to win glorious triumphs even though checkered by failure, than to rank with those timid spirits who neither enjoy nor suffer much because they live in the gray twilight that knows neither victory nor defeat.

Theodore Roosevelt

 

 

As a teen with low vision I told my mother I wanted a t-shirt that read, “I‘m not stuck up, I’m blind!”  I was self-conscious because nobody knew my sight was failing and I didn’t want to seem like a snob when I’d walk past people I knew without saying hi.  I have a condition called Stargardt’s disease, it started affecting my sight when I was 12 and by the age of 18 I was legally blind.  I could function quite “normally” but there were many life situations that were a challenge.

When as a young adult I moved from a small town to a city, I had some close calls in traffic and was advised to use a white identification cane (ID cane). This is the type of white cane that is recommended to people like me who don’t need it as a feeler, just as a symbol.

Many people are unaware that long before we had the mobility techniques that employ the cane as a tool, a white cane was just a symbol. In 1930s Paris, Guilly D’Herbement noticed blind people struggling in traffic. She thought the white sticks being used to direct drivers would be well used by blind people to increase their safety.  She launched an awareness campaign which was taken up by the Rotary Club and proliferated in the US by Lions Clubs.  So the original purpose of the white cane was as a traffic safety beacon.

 

The ID cane did help my safety in traffic because I didn’t worry that someone would think I was an idiot waiting at a green light, so I took fewer risks trying to save my vanity. I quickly learned that the cane was also useful when I needed help, other than crossing the street, while at the same time a bit of a problem for me because I felt self-conscious about people noticing that I was able to see quite a bit; I wondered, should I act blinder than I am when I carry the ID cane? That didn’t feel so good either!

What the ID cane did not convey was the fact that while legally blind I still have some vision.

In the fall of 2000 I found I had a bit of time on my hands as my youngest child had started full time school. One day I attended an open house held by a charitable national service agency for blind people in Canada and got into a chat with people I met there. We started swapping stories about situations when the lack of eyesight hadn’t been the problem but rather the fact that whomever we were dealing with was unaware that we had low vision. One of the staff mentioned that clients had been asking for a badge that would let folks know they couldn’t see well. We all agreed that it was a “great idea” but there was no such thing. Since I had some free time I went home and designed a wearable symbol and called it the Checkered Eye. The Checkered Eye uses a white background with the words Low Vision in black. Between the words is a stylized eye with the iris depicted as a black and white checkered pattern; simple but effective. I sent a letter to the service agency confident the problem was solved.

Perhaps you can imagine how disappointed I was to hear that they would not pursue this idea.

At this point I consulted with many people. I discovered that some with low vision weren’t interested in a wearable symbol, and that many were. Most were thrilled with the discreet option of a pin on their shirt or jacket. People who use walkers or wheelchairs said it would be easier to wear a symbol than to carry an ID cane. I also learned that brain ailments can result in visual deficits and difficulty speaking and so a symbol to point to may benefit some of those so afflicted. I personally noticed that sometimes my cane is hidden behind a check-out counter and so a symbol near my face would help in scenarios like that. I also found that people in hospitality, retail, health care and any service type job, were happy to know when clients might need specific care and thought the wearable symbol was a good idea too.

So I decided to go ahead on my own. After 14 years of grass roots efforts, mostly by people with low vision,  the Checkered Eye is now in use in Canada, the US, New Zealand and Switzerland.

It’s clear that these symbols have their merits and meet existing needs and their usefulness can be cemented by clear understanding.
Remember this: for safety, the white cane, for low vision sensitivity, the Checkered Eye. Pass it on!

 

Hey it’s White Cane Week!  The first week in February is White Cane Week in Canada.

White cane week was started by the Canadian Council of the Blind (CCB) in 1946.  It’s a time when various groups make efforts to raise awareness of issues concerning people who have any degree of blindness, and of course the white cane.

The Checkered Eye Project (CEP) also takes this opportunity to do a bit of awareness boosting about the white cane and of course the checkered eye.

Here’s what we’d like you to know:

 

The wearable checkered eye emblem and the white cane, as symbols, both indicate blindness.  Neither says more than that so if you need to know what kind or what degree of blindness a person has you’ll need to communicate with them.

The checkered eye is for face to face situations and just ads a bit of understanding.

Here is a photo of me wearing a checkered eye.  The version I'm wearing here is one that does not have the usual text saying "low vision".  We hope to be able to offer these once understanding is well established.  That way we'll no longer have to translate them. 

 

There are three types of white canes: the ID cane, the mobility cane, and the support cane.

 

The white cane originated as a traffic safety beacon in the early 20th century and is white because this was determined to be the easiest color for drivers to see. 

Below is a photo illustrating the use of an ID cane.  Held diagonally across the body this type is used by people who don’t need it as a feeler or mobility tool, just as a symbol.  This type of white cane is shorter and less sturdy than a mobility cane. 

 

Mobility canes look much the same and may have various different tips and handles.  The technique, with which blind people use these canes in a side to side sweeping fashion to locate obstacles and landmarks, was developed by Richard Hoover at a US military hospital.  He taught it to blinded veterans of WWII in the 1940s but it was not widely accepted and taught until the 1960s.

Ever wonder why there is red at the bottom of a white cane?  Me too.  I have had discussions with several people who teach orientation and mobility (O and M) to blind people in Canada and learned that the red is intended to increase visibility when the ground is snow covered. 

The following photos illustrate how the all-white cane blends into the snowy background, whereas the red tipped cane in the second photo is easier to detect.

 

One of the instructors indicated that the black cane originated in Russia where it was intended to create the desired visibility in snow.  

However, other O and M instructors told me that the black cane is a fashion choice intended for formal situations like weddings and graduations. I have come to learn that people do use black mobility canes for just this reason.  I haven’t confirmed the Russian origin story though.

Here’s a photo of a black cane in the snow.

 

It’s important to note that if a person is using a black cane as a mobility tool, it is likely understood that the person using it has a severe level of blindness.  However it is no longer a symbol for blindness and the user cannot expect it to convey the same safety message as a white cane does, to drivers in moving vehicles.  

The final type of white cane is, I think, the least well understood.  The white support cane is also used as a tool as well as a symbol.  In this case its functional use is to support some of the user’s weight while at the same time it’s intended as a symbol to communicate blindness.

Here’s a photo of a white support cane in use.

 

Just for fun, since there is already a black cane option for the fashion minded, guess what – I bet you guessed it!  Yup, you can now get any of a rainbow of color options for your mobility cane!  I think if I used a mobility cane I’d have one in every color – I am a bit spoiled!

The below photos are of my collection of canes, one of which I use personally and the others I use in speaking engagements.  Thre are 2 ID canes, a black cane, a support cane, and a mobility cane with a different color on each of its seven segments.  The second photo was taken with a flash and shows their reflective ability.

 

 

 Check for the checkered eye and watch for white canes - pass it on!

I’m trying not to use foul language here.  As I mentioned a while back I was considering registering the CEP for charity status.  This would allow me to apply for grants and issue receipts for donations with the goal in mind of paying someone who knows how to accomplish the CEP mission – awareness. 

However I changed my mind after a telephone consultation with one of Canada’s leading charity law experts who used lots of phrases like “and what have you” and “so on and so forth” and I pictured as looking like Henry Kissinger.

Mr. Kissinger made it quite clear that there were lots of potential dangers, pitfalls, and onerous procedures involved in operating a charity.  He waited till near the end of the conversation to hit me with the final blow of how much it would cost to engage him or anyone in his company to do the paperwork, and the deposit required exceeded the annual earnings of the CEP on even the best years in its existence.  He did mention that I could do all this without a lawyer.  However, after starting down that path and discovering that even with my superior intelligence, I couldn’t wing it through the documents, and after speaking to two lawyers and an accountant, I was ultimately passed along to someone who “knows that kind of stuff”.

Now it wasn’t immediately after my telephone meeting with Mr. Badnews and his perky assistant that I decided to say (not gonna swear) never mind the charity registration.  You see Mr. Badnews Kissinger had referred me to go online and search “charity tax tools”.  This would lead me to a resource that would explain some different approaches to registering as a charity. 

The page was not all that hard to find and I did manage to read about the three suggested alternatives: partnering with an existing charity, operating as a non-profit, and operating as a business, the latter of which is what the CEP already does.

The first suggestion is actually something the CEP already does as well, we partner with the Port Elgin Rotary Club and Charitable Trust each year when submitting the paperwork that qualifies our public service announcements for free television airtime. This partnering idea brings me back to the thought that it would be such a great idea to just be a part of the Canadian National Institute for the Blind since it seems that we hope to benefit the same group of people.  Alas, they have strenuously and on many occasions declined the partnership idea.

I’d like to note here that there are quite a few individuals within CNIB who see the merits of the checkered eye and make clients aware of it as an option for self-identification, but the CNIB as a whole does not support the CEP.  “As a whole” is not foul language.

So it appears that I’ll continue learning as I go, working with the terrific associates I’ve connected with, and doing what I can for people who, like myself, have low vision.

Just like the rest of 21st  century human life, the festive season is full of wonders and delights that are pretty much exclusively visual.  And just like the rest of 21st century human life, there is plenty that can be savored without acute eyesight.

(Below is a photo of three small stylized Christmas trees.  They have twisted spines, a star on top, and flat metal strips for branches, curled at the ends.  They are covered with gold glitter.  The tallest has a gold bauble with a red tassle hanging on it, the middle one has a tiny blue flashlight hangin on it, and the smallest has no ornaments added.)

 

In most years The Checkered Eye Project does little other than fill mail orders in December.  Everybody else is so occupied with the seasonal volume of business that we don’t bother trying to get in anyone’s face about spreading awareness of low vision and the checkered eye.

 

This affords me the opportunity to do whatever I feel like in this the season of joyous excess.  For the past eight years I’ve been happy to help my Friend Stephanie Reidpath organize and perform at Tunes for Toys, a funds and toy gathering occasion for the local Salvation Army.

 

Music gives me a great feeling of oneness.  I like to take in the sense that we are all in it together; the musicians are obviously in on the cooperation, but the crowd has lots to do with it too. I’m so glad my eyesight doesn’t hinder that. In fact it probably augments it. Since I can’t see people’s facial expressions I project my own ideas of what their movements and body language are saying.  It’s all up to me whether I enjoy it or not so I pay attention to myself and stay with favorable interpretations.   When there’s just no mistaking that the crowd is having a good time too, you can’t beat it!

 

My hubby Ray and I are empty nesters now so, since we’re not playing Santa anymore, we thought we’d play some tunes with friends on Christmas Eve.   Before any guests arrived Ray and I played and sang a few on our own.  Ray is an actual guitar player so he did a few numbers while I messed with harmony and kept time with a hand drum.  Then I plunked through a few on my own guitar and just enjoyed that “we are one with the music” sensation.

(Below is a photo of my Mini Martin six string acoustic guitar on a stand, a round hand drum and drum stick on the floor in front o f it.)

 

I think the best is when I let the intellect drop away and just notice sensations.  And there’s so much to notice this time of year.

 

Someone’s bound to be baking something somewhere in your life during the holidays, and the scents of certain spices are familiar to me:  cinnamon, cloves, and of course the traditional dinners.  There’s nothing like that first whiff of the turkey.

 

 

The tastes go right along with the aromas. I think I’ve had a Werther's hard candy in my mouth 87 percent of my waking time this December.

(Below is a photo of a gold candy dish shaped like a glass ball Christmas tree ornament.)

 

And the tactile stuff, there’s a lot of that too.  I love getting my hands into the gingerbread dough, the feel of some of the delicate glass ornaments, and recall the prickly trees we used to struggle into the house and prop up to be adorned.  Feeling cozy in the new jammies you might have received, snuggled down into the couch for a movie or two.  Those are some pretty nice sensations I must say.  And another one that happens a lot this time of year is a favorite of mine; hugs.  Even when I’m not in on the hugging I really enjoy witnessing people give each other their mushy seasonal embraces; particularly men.  You know when guys are giving a friend the old grab and pound on the back with a smile on the face and often accompanied by some sort of verbal jab, they really do care.

                               

So whatever you and yours do at this time of year, I hope you are having a lovely time and wish you all the best in the new year, and always.

 

On October 18th and 19th I hosted a Checkered Eye information booth at a conference of the California Council of the Blind (CCB) in San Diego, California U.S.A.,(not the Canadian Council of the Blind).

In the past, the CEP has met with opposition from organizations of and for the blind, so when I was invited to be an exhibitor by the CCB, I figured I should go for it.

I feel like it was worth the travel time and expense as most of the people I chatted with were more than welcoming to the concept.  Even those who saw its merit but didn’t think the symbol was for them, took a booster card and said they’d be happy to pass along the information.  Many also decided they’d like to wear a Checkered Eye so there are now some new checkered eye users out there helping spread the word. How awesome is that?

Below is a photo of Paul and Paul Juinior wearing CCB t-shirts and checkered eye pins.  By the way I wasn't able to resize the photos this time.  I hope it doesn't mess up anyone's access.

  I also made what I hope will be long time connections with people involved with groups specifically for people with low vision.

As for the very few people who expressed the same skepticism I’ve encountered in the past; two of them ended up embracing the idea once they understood it completely, and another, who remained skeptical, reminded me of something Kelly McDonald articulated for me.  The charming Mr. McDonald is a broadcast journalist I’ve met at disability related events over the years.  Kelly explained that sometimes, if a person has never had sight, they might have a hard time grasping some visual concepts.  This could explain why this skeptical lady seemed to think that the Checkered Eye was an unreasonably blatant announcement that a person has low vision, and yet seemed quite comfortable with the sizeable white mobility cane she was holding.

 

 

Here’s the bad news part of this blog post.

 

 

While preparing for my trip to the CCB conference, I decided to add a few days in BC to visit 2 of my siblings and my parents.  I got a travel agent to book the flights and let the airlines know that I am a traveler with a disability and that I’d require help finding my way.  Cory from Robert Q travel was wonderful.  I was a bit concerned when she let me know that I’d have to transfer planes at the Los Angeles airport during my trip from San Diego to Vancouver, so she made a phone call dedicated to arranging my assistance there.  She let me know that they’d asked for some information that she didn’t have and gave me a number to call and fill them in.  When I called I was assured there was no additional information required.  Of course I called Cory back to ask her what this extra info was.  She didn’t recall so she called them back herself.  Without going into tedious detail here I’ll tell you that there were 5 phone calls made in attempts to make sure the airline knew when and where I’d be at LAX and that I’d need help getting from plane to plane.  Fine.

The first leg of the trip started at Toronto’s Pearson International Airport where a tall, dark and handsome medical student met me at a pre-arranged spot.

Below is a photo of him.

 

He guided me without incident to check in and to an area where I awaited the next assistant who then took me through security and customs.  I ended up well acquainted with a couple, one of whom was in a wheelchair, who were travelling on the same flight.  Lovely. No Problems.  It was quite apparent that the ACAP staff (Airport Customer Assistance Program) were busy but well trained and equipped to assist travelers with special needs.  The flight attendants also understood my needs and were terrific.  Upon arrival in San Diego I also received specialized assistance and was delivered directly to a taxi.  Terrific, I was there!

I must say that the hotel staff at the San Diego Del Mar Marriott was also very well equipped to attend all of us blind folks and the many guide dogs.  I’m pretty sure they had extra personnel on duty, and all the people I met were just great.

Below is a photo showing part of the exhibit room.  People are leanig over exhibit tables, two with guide dogs.  There are also three people leaving; one with a human sighted guide and two with guide dogs.

I stayed in San Diego from Thursday to Sunday and my departure was an early one.  I arranged a taxi the previous evening and was up and ready in the wee hours of Sunday morning.  My cabbie Noor was very sweet.  He was from Somalia and had eight kids.  When he told me he also had another one on the way I told him he better cut that out!  The world’s already overpopulated!  We both laughed.  As we approached the airport he said he wouldn’t leave until someone was there to meet me.  He didn’t have to wait long as an attendant approached me with a wheelchair almost as soon as I exited the taxi. 

I guess it’s their procedure to use a wheelchair because when I let him know I didn’t need it, he insisted.  Okay fine, I’ll take a ride. 

So this uniformed gentleman took me to the check in counter and then to security.  He wasn’t able to go through however, and when I cleared that area and had my shoes back on, there was no one to meet me. I explained my situation to the guards on this side of the check point and they summoned someone for me.  The lovely Myra, who came to help me, was from TSA, Transportation Security Administration.  She took me to where my plane would be boarding and, since I had several hours to wait, she showed me where I could get a coffee and where the ladies room was.  When it was boarding time, Myra came back and brought me to the person who was directing people out to the plane.  This was one of those occasions when there was no hallway leading directly into the plane.  Instead the passengers walked across the tarmac and up a moveable staircase to board.  We also left our so called carry on to be loaded with the rest of the luggage. I think that had something to do with the size of the plane.  So actually, the other passengers were the ones who helped me to the plane.

I had to explain to the stewardess that I needed help finding my seat but the rest of the flight was fine.

I should mention here that there had been a 25 minute fog delay for our departure from San Diego, so when we landed at LAX, time was relevant.  The stewardess asked me if I would need help.  I told her yes, and she asked one of the fellows moving baggage to bring me over to the luggage cart.  He helped me find my bag and brought me to board a bus that brought us all to the terminal.  Unfortunately there was no one to meet me inside.  The other passengers were all rushing along to make it to connecting flights.  I considered asking if someone else was going to Vancouver and could I tag along with them, but then thought the better of it.  I found a person who looked like staff and asked if she was there to help me.  She wasn’t.  I asked her to check if my next flight was still on time.  She looked at one of those screens and let me know it was departing on time, which was still over an hour away.  When I told her again that I need help finding my way through the airport, she told me to have a seat and someone would come get me. 

As I watched all the people hurrying through the area, I again considered asking if anyone was going to Vancouver…I didn’t do it. 

I have no idea how long I sat there but it felt like way too long.  There was no more rush of foot traffic and still no one arrived to take me to my connecting flight.  Finally I got up and approached another person who looked like staff.  He had come into the area and gone behind the desk and was making what seemed to be a very important call.  Another fellow who looked like he was in a pilot’s uniform was also speaking with him and they were both watching out the window.   I wasn’t waiting any longer.  I got up and got his attention.   I let him know my situation and he made a call and assured me someone was on the way.

 

Finally a little lady whose name I couldn’t possibly spell came to assist me through the terminal.  She was from Ethiopia and had a name with one of those guttural sounds in it.  She said I did well pronouncing it but I won’t try to spell it.  It seemed to me that she hadn’t actually received any training on how to lead a blind person, as she tried to take me by the hand.  I let her know I could follow her and we hurried along to a place where we awaited the “wheelchair bus”.  It took a while so we had lots of time to chat.  I told her about offering her elbow when assisting a blind person and to walk slightly ahead of them.  She taught me a few words in her language but of course I can’t remember any of them.  At the right time however, I was able to thank her in her language.

The bus driver seemed like someone who was just putting in hours and maybe was stressing himself about something.  I felt like I kind of had to bug him to get me someone to help me find where to go, but he got someone.  Again it was with a wheelchair.  Fine.  This person brought me to the WestJet counter and left me there.

When I handed over my boarding pass the young lady behind the counter looked at it, keyed in something on her computer and then let me know I’d missed my flight.  I kind of didn’t believe her because there was still about an hour before the departure.  She let me know that it was quite a distance from where we were and that I wouldn’t make it.  I tried to insist we give it a shot but it just was not going to happen.  I stood for quite a while at the WestJet counter with this young lady whose name I think was Jessica.  Jessica was very good; she arranged for another assistant to come and get me, but let me know they didn’t know which gate the flight would come to yet, so they didn’t know where to take me.  In hindsight, I think it’s possible that they didn’t send anyone until they knew where to take me because before anyone showed up they had a gate number, flight number and new boarding pass.  

When Jessica let me know the next flight was not for another 9 hours I didn’t throw myself kicking and screaming like a two year old onto the floor.  Not in real life anyway.  Thinking about it now I can imagine a cartoon image of me standing there with a very grim, shaking face and steam shooting 10 feet out of my ears, the old Flintstones work whistle wailing at top volume.

Jessica had managed her part of this debacle with great professionalism.  She remained calm, always gave me the impression that she knew what to do, and very importantly, gave me the impression she was truly sorry about what had happened.

The assistant showed up while steam was still shooting out of my ears so I didn’t chat much with her.  She took me to the waiting area for my gate and let me know she couldn’t stay.  Before she went on her way I got her to take me to a sit down restaurant.  I was not in the frame of mind to have to explain that I couldn’t read overhead menus and then try to find myself a seat carrying a tray, dragging a suitcase and dangling my white cane from my wrist.

So in this family style restaurant in the Los Angeles airport, where everybody but the cook did a great job, I ordered a beer and something forgettable. I finished my meal before I got on the phone with the same people I’d called in advance to make sure they knew I am a disabled traveler and to arrange assistance.

I wanted to know if they could arrange a place other than the bus station type seating area for me to spend the 9 hours they’d tacked onto my travel time.  I thought maybe there’d be a flight crew lounge, a first class lounge, or even a hotel attached to the building.  Nope.  Nope.  Nope.  “Sorry ma’am, we don’t have access to that.”

I let them know that I have impaired vision and that someone had just brought me into the mall type of place and dropped me in a restaurant, so I’d like someone to come and show me around at least.  I had no idea how big the place was or what kind of time killing options I might have here. 

After a 59 minute phone call, during which I was on hold a lot and they tried to apologize and just brush me off, another assistant showed up.

This young lady showed me where the ladies room was and brought me to the seating area.  My phone battery was almost dead so I asked if I could use her phone to call her boss; I wanted to speak to the people in charge of attending travelers with disabilities.  She dialed him up and handed me the phone. 

Young Josh did a great job.  I ranted in his ear and he responded with the appropriate concern but ultimately without authority to do much.  It seems to me that he was a WestJet employee, not a member of any crew that was specialized in assisting travelers with disabilities or medical concerns.  I could be wrong but I got the feeling that doesn’t exist at that airport. So Josh arranged for $20 worth of food vouchers which he delivered to me personally.  He also let me know that WestJet was offering me a $50 travel voucher.  I declined that and told him I’d be calling them later.

t manage to strike up any conversations.  Maybe I was still giving off that cranky snarky old l…

Below is a photo of me with a suitcase in an airport, a hand on my hip and a slightly crabby look on my face..

Josh showed up at boarding time again and made sure I was attended.  I did manage to have a great chat with an orthodontist on the flight to Vancouver.  Louis was a very interesting guy and we were both thrilled that no one had showed up to sit in the seat between us in our row of three.  It was nice to have a bit of good luck on my day with a few very unlucky moments.

A couple of other good moments: Donna, the stewardess who seated me on the Vancouver flight, already knew about the checkered eye and so did the customs guy in the Vancouver airport.  I liked that a lot.

The wrap up to this somewhat messed up transport job was this: American Airlines, who flew me from San Diego to L.A. gave me a credit for a future flight, which, since I rarely fly, I’ll likely never use, and WestJet, who flew me from L.A. to Vancouver, also gave me a likely useless travel credit and upgraded my seat for the final flight of my trip from Vancouver to Toronto. 

A bit more crap from the travel story; while the people I’d spoken to on the phone had not been able to provide me with a satisfactory conclusion, they had all been very good at conveying compassion.  However, the people on the customer feedback phone lines were surprisingly bad.

I won’t go on too much about it so I’ll summarize their angles that should go in a “what not to do list” for people doing customer care:

     -pass the buck (it’s not our fault)

     -blame the customer (you shouldn’t have          gone through LAX)

     -play the victim (I’ll hang up if you’re              blogging live).

 

In conclusion I’ll say that I’m not all that confident in airport assistance for travelers with disabilities.  The majority of the staff I dealt with was competent, but when a person is so dependent on the assistance of others, it is imperative that each one of them is trained and capable of fulfilling the duties required of them both independently and in cooperation with the entire team, and that they team has adequate procedures.

After thirteen years of working towards public awareness for the checkered eye and low vision in general, I am looking into registering the Checkered Eye Project as a charity.

 

I evaluated the idea on two previous occasions. Each time I decided that the money and effort to set up the charity was better spent on the actual education process.  I figured that involving a board of directors would complicate things, and that the result of officially becoming a charity (being able to ask for donations) was not what was needed. In my imagination, since telling people what the  Checkered Eye means serves the greater good, people would likely just pass it on, so money wasn’t what we needed…I guess you’re never too old to be naïve. 

So thirteen years down the road, when someone asked me once again why the CEP wasn’t registered as a charity; and upon further reflection, I slapped myself on the forehead and came to the realization that

I have been running what is in the true sense of the term a “not for profit organization”, without the benefits of being legally signed up as one. 

So now I’m in the process of reading tedious documents and seeking assistance from whomever can help, with composing and submitting them to the appropriate agencies.  Fun...

Watch for news in the next blog about my trip to the California Council of the Blind conferenc in San Diego.

Not a beacon

 Twice in the whole history of the CEP, I have received a request for a T-shirt bearing a large checkered eye.  I have been hesitant to provide this as it seems to be intended for a use that the checkered eye is not suited to: safety.

In the first instance it was requested by a lady whose daughter has low vision and was a horseback riding student.  The mother assured me that she would make sure the riding school was informed about the meaning of the checkered eye and that this would simply add to courtesy for her daughter and her instructors, as she was always attended.

The second time it was requested by a lady recently, who wants to wear it at the gym.  Again, she assured me that she’d do her best to make sure people at the gym understand the symbol, and that she wouldn’t be using it for safety.

I want to be very clear that the checkered eye is not meant to attract attention. It is not a beacon as is the white cane.  The checkered eye is meant to add that little bit of information (I can’t see well) in situations where the user is already engaged face to face with another person.   Got it?  K.

So here’s the humor that came out of this request: me, low vision lady, attempting to make a large checkered eye to put on a t-shirt.

First I thought I’d make an iron on.  You can get paper that you can print on with a regular computer printer, and then iron the image onto fabric.  I made the rookie mistake of ironing on the standard checkered eye.  Anything you iron on comes out as the reverse image, which is no good if it contains text.  Since I don’t know how to make reverse images with my computer, I moved on.

(This is a photo of a t-shirt bearing a backwards checkered eye.)

My second idea was “hey, a stencil! All you have to do is dab or spray paint!”  Are you thinking ahead faster than I did?  Hmmm, cutting out the stencil, that’s something that may require precise vision.  K, so I asked a friend (thanks Carina) who is artistic and fully sighted.  She took a great stab at it, but without making the thing huge, the stencil was too flimsy not to tear during the cutting process. 

All the while I was involved in attempting the D.I.Y. production, I was seeking a business that would rescue me and do just one or 2 t-shirts.  I’ve had batches of booster shirts made in the past and the unit price would come out being reasonable, but for such a rarely requested item it didn’t make sense to buy a quantity.  The novelty touristy kind of t-shirt makers were going to charge me about $50 per shirt because I wanted the image on the front and the back.  No deal! 

I told my customer that I was having trouble, and sent her some checkered eye buttons in the meantime.  Then, weeks after the initial request, Carina messaged me to say our local sports store makes t-shirts, and they’d do this type of request for about $20 a piece.  Mine turned out to be well under $20 each – score! That’s right; Scoreboard Sports in Port Elgin can make you a custom t-shirt for a reasonable price, even if you only want one.  Thanks Brad!

 (This is a photo of a black t-shirt with a pocket sized white checkered eye on one side of the front,  and a white t-shirt with a large black checkered eye centered on the back.)

I recently read and shared on Facebook an article called "10 things not to say to a person in a wheelchair".  It’s great to have a venue for informing people about things that they may say which can cause offence.

Here’s the thing: in the comments people posted after the article, some added other insensitive remarks.  Fine.  However, I noticed one that implied that we should assume anyone wearing glasses is not "blind".

I’ve met many people, and I happen to be one myself, who has blindness of some degree AND uses glasses.  So while the glasses sharpen up the edges in my periphery, they cannot fill in the big blank spot in the center of my visual field, so even with them on I am legally blind.

  (That's a photo of me shuffling cards, wearing glasses, in 1982.)

The point I’m making is that we all make assumptions.  In the "10 things…" article it’s not necessarily the content of the statement but rather the ignorance and certainly insensitivity behind it.

Everybody, including people with disabilities, makes assumptions.  Problems arise when we are not open to learning our assumption was wrong.

The whole point of the checkered eye is to add a bit of information in face to face situations that may reduce the difficulties caused by the assumption that "this person is fully sighted".

My pet peeve awkward insensitive remark comes from someone who actually knows me, witnesses me do something clumsy due to my eyesight and says "what are you, blind or something?"  I suspect it's an attempt to defuse awkwardness with humour, and I must admit that humour is my default so I might have done the same thing.  Also, I realisze that my experiences and my feelings are my own responsibility, so, while I still do bug myself over that one a bit, I'm much better at letting it go.

Before I tell you  a personal story related to living with a visual impairment, I have some project news. Thanks to our Swiss associate Rosalind Zaugg, the Checkered Eye Project (CEP) is taking another step toward awareness in Switzerland.  In 13 years the CEP has been unable to enlist assistance from Canadian organizations that provide services to people who are blind or have low vision.  However, thanks to Rosalind's efforts over the last few months,

the UCBA, the biggest such organization in Switzerland, wrote and published an article about the CEP in one of their newsletters.  As a result of the article they received some interest in the checkered eye from clientele and so, at an upcoming  open house in August, they will be displaying  checkered eyes and CEP literature, both translated for them into French.　

Although this doesn't mean that the UCBA is officially on board, I remain optimistic.

---------------------------------

This month my hubby Ray and I have been working on a renovation to our basement.  We did some of the work but most of it we hired out.  Of course all the design decisions are ours.  Here’s how that’s relevant to the Checkered Eye Project blog; we’re both color blind. 

Ray is an average sighted person, wears glasses for reading and driving, but he is quite color blind.  I commented to him one day that I thought the brown shirt he was wearing was a good shade for him.  He looked a bit disappointed and told me he thought it was red – significant color blindness!

I was unaware that I was color blind until being thoroughly tested when the doctors were trying to diagnose my condition.  Even since being informed that I am color blind I haven’t found it to effect much.  I match my clothes just fine, paint the odd piece of art, and do well at fabric selections for sewing projects.  So I felt quite confident in the color selection I made for the bank of cabinets we bought for the wet bar in the basement.

Wrong!  Boy was I wrong! I was planning a color scheme that is inspired by a pair of vases I have

and the color I wanted for the cabinets was red, fire engine red. 

The color I got was not that!  I posted a photo of them and asked my Facebook friends what they’d call that color.  I got answers like burgundy, eggplant, and merlot. 

I’ve never used any of the color detecting gadgets that are available for people who can’t see for themselves, so I’m not sure if they differentiate between colors like red and burgundy.  Regardless, since I do okay, as far as I know, with day to day color picks, I don’t’ think I’ll go out and get one of those just yet. I will however seek consultation from someone who has acute color vision the next time I'm making choices about things that are expensive or large permanent fixtures in the house!

My take away from this experience is that it's important to understand my own limitations. That way I have the opportunity to learn about tools and methods with which to manage them, and decide which ones work for me.

　

I had another post almost ready for this month's entry but some really cool stuff happened just recently that I think will upstage that...

On Facebook I discovered a group about awareness for Stargardt's Disease (S.D.).  This is the condition that caused my visual deficit.  Cool.  I thought I'd join up and see what folks were talking about.

One of the posts was a list of bloggers who have S.D.  This caught my interest so I opened up one of them.  I started reading the blog and comments and was quite moved by reading a dialogue between the blogger and a lady in her 30s who'd been recently diagnosed with S.D., and was sounding quite upset.  The blogger gave her some reassuring information with a personal touch and the whole thing reminded me how wonderful peer support can be.  I've been living with this condition since I was a kid and can likely ease the worries of some people who are fretting about what's to come.  It will be great for me also to have people to chat with who can relate directly to some of my experiences and offer their perspectives.  I've got to work on my technical skills though because I wasn't able to figure out how to post the comment I composed! 

Another recent discovery was the movie "Going Blind".  It's a documentary about a man's experience of losing his sight and learning about what help is available for people like himself. I haven't seen the documentary but my impression is that it outlines some services, products and strategies people use to manage with visual impairment and the fact that hardly anyone is aware of many of them.  Of course I thought immediately about the checkered eye and how it would have been perfect to have some info about it included in this movie.  Well that ship has sailed, but I've had some contact with the people responsible for the movie, and I'm optimistic about doing some sort of cooperative thing.  They also have a Facebook page and the host posted a link to the checkered eye website.  It got 23 "shares"!  As a result, I've been getting some really widespread queries and orders.

And of course my own personal recent goings on: I got officially approved as a candidate for research into treatments for S.D.  All I had to do was give a blood sample which was then tested to determine if I have the genetic mutation associated with S.D., then wait a year and a half for an appointment with a doctor who could verify by examining me, that I in fact have S.D.  The final step felt a bit like an awful fuss to gather the same information we've had for many years, but now they have current photos of my retinas and I got to take a wee trip to Toronto with my hubby.

So on my trip I was delighted with accessible literature in a couple instances.  First, at the Delta Chelsea Hotel, where I requested accessible literature when I made my reservation, I was very happy to find a large print version of their room service menu and emergency procedures, and a phone with an oversized keypad.  I've been asking for these accommodations for years and this is the second time they've ever been succesfully provided.

Naturally when my hubby and I went for a bite and a beer at Jack Astor's, I asked if they have a large print version of their menu.  Expecting the usual response, I was surprised, as was our waitress, to learn that they did in fact have an accessible version which had both large print and Braille.  Super! 

My reading software must be from the US because when I was using the initials as an abbreviation for Stargardt's Disease without periods,  it was saying "South Dakota"!  I figured I should add the periods for any readers who use screen reading software. 

 The above photo depicts 18 yesar old Sam Thaw helping his mother Libby by reading receipts while she completes documnents for the Checkered Eye Project tax return.  This blog post was written by Sam.

 To have a parent with low vision comes with advantages and disadvantages. The latter consist of things that could be looked upon as chores, but, have made me sensitive to and aware of other people’s needs, whether they are mental or physical. Advantages include being able to sneak a little "something something" by her in the night or free 411 for our family. The so called chores consist of helping my ma cross the road or walking with her somewhere, reading articles or labels to her.

Being able to sneak something by her use to come in handy when I was younger, trying to get three cookies instead of two and sneaking paraphernalia past her. But as I grew older I realized that I felt guilty using her visual acuity to my mischievous gain. That realization was a good lesson for me. It taught me that just because you can cheat, and not get caught, doesn’t mean you should. I took that lesson and transferred it to cards, video games, and day to day life.

The chores I do to help my mother are quite easy, though as a selfish youth I sometimes secretly loathed the moment my mother wanted me to walk or read with and for her. As I grew older, I became aware that this was something I could do to make my mother’s life easier and more comfortable. I’m now happy to help her out doing whatever she needs. These chores have also made me more aware of what other people need. For example help an elderly person by grabbing something heavy or out of their reach for them.  All in all I feel like having a parent with low vision is a good experience, thanks for everything ma.

 

 

When I talk about raising kids as a person with low vision and what concerns or strategies I had, there are a few things that jump to mind.  One was the importance of reading and that I wouldn't be able to model that.  I'm so relieved that my kids turned out to be readers.  I was not a good example of someone who enjoyed reading or who sought information in books so I worried that they wouldn't pick it up. Fortunately Ray is an avid reader and he read bedtime stories to them.  He also read them some novels as they got older. I think my part in encouraging reading was that, as soon as they could, I would have the kids read things for me.  I imagine that could have also been a bit of a confidence booster for them. Being a "helper" for an adult can be an ego boost for little ones.

We live in a beach town so a strategy I used when going to the beach was to have them wear large brightly colored hats.  I was doing a bit of sewing at the time so I made them myself.  It was a good thing I could do that because I wanted them really big!  They were too young to be self-conscious about them, but eventually the spectacular hats had to go.  After that, if we were on the beach, I just went everywhere with them.  If I didn't feel like swimming, it was sand sculpture and water erosion experiments till I got my energy back!  

Another practice we had was that if we were in a park and they wanted to play a distance from me they had to sing, and loud!  The alphabet was the usual song of choice and again, they only did it until they were old enough to feel it was just too uncool!  We had to develop some trust so that they could play further than arm's length from me. 

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Last month I was delighted to receive a brief video greeting from Rick Mercer.  It was a 24 second spot in which the comedian gave the basic information the CEP is trying to pass along and encouraged visiting the website for more information.  It had taken a bit of begging and pleading so as soon as I got a yes from them I was over the moon. 

I immediately put it up on Youtube and shared it on my Facebook page.  Ray posted it on the Champions for the Checkered Eye Facebook page, because I couldn't figure out how to do that! 

Well, Rick Mercer got "shared" a lot more than any other checkered eye video's I post.  I suspect this is because he is a famous person, someone people recognize.  Familiarity seems to catch people's attention, so I'm now making more efforts to see if I can engage any "famous people" to help tell the whole wide world what the checkered eye means. 

If you know anyone famous, can you send them my way?!?

On a recent stay in Toronto, I was unattended by my usual sighted guide and favorite human, my hubby Ray.  I used my ID cane quite a lot as it’s the best thing for traffic safety, and I was walking around very busy parts of the city.  I also kept it in hand when I entered malls, stores, and other buildings.  I found that when I had the cane out, I didn’t need to explain, or should I say convince people that I can’t see well. 

I found that in some cases people went overboard with how much they wanted to help.  Lovely.

However, more than once, when I didn’t have my cane out and mentioned that I have impaired vision, it was like the person didn’t believe me.  There were also the situations in which I did have my cane in hand, and met a person behind a counter that obscured their view of the cane.  I was regularly getting demonstrations of the need for a recognized symbol close to my face!

After the wonderful accommodation received from those who apparently thought I'm totally blind, it felt strange to return to having to explain and convince people that I actually do need their help.

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I love the idea of keeping any interested parties informed, through this blog, about current CEP goings on.  I also quite like the idea that I can post the occasional bit of CEP history here.  The possibility of this being an interactive forum has excited me as well.  So I'm sure you can imagine my delight each time a comment has come in.  At first I got them one at a time, which was great.  There was no need to dedicate a long stretch of time to going through, approving or editing them, and of course composing responses to those for which one was required.

Then one day I noticed a comment had come in.  But wait, ten came in at the same time!  Wow!  I was thrilled.  I'd handed out some pamphlets recently, so I thought maybe a bunch of those people read the blog and commented!  So cool!

Can you see what's coming?  When I went in to read the comments I quickly realized that I'd been bombed by some nasty spammer! 

Thank goodness for my trusty tech support guy, Phil (of Digital Expression).  He did some of his technical magic, and I haven't received any more of those disappointing clusters of gobbledygook and sales pitches!

I am more than willing by the way to spend the time it takes to address any comments that do come in, so comment away!

I just posted a new video here and on Youtube.  It's a video promo by Rick Mercer.  Check it out.  More about that next blog post.

A while before Christmas, I heard from a fellow in Victoria, BC. He had noticed that there are several pins now available that are intended to communicate low vision. He was collecting samples of them to send to CNIB and ask if they plan to get behind one and help with public awareness. I sent him some checkered eyes of course.

He wrote to the CEO John Rafferty, and proposed a plan, one that would cost CNIB nothing, to explore wearable symbol possibilities; whether there was a need for or any interest in such a thing. Weeks later, he called again to let me know his letter and idea seem to have been ignored by Mr. Rafferty.

Meanwhile, my associate in Pittsburgh, Stephanae McCoy, discovered another low vision pin. This one says "I have low vision" and depicts 3 adorable little mice wearing dark glasses.

Some organizations of and for blind people have declined to support awareness of the checkered eye, stating that there’s no need for it.  You want a symbol? Here's your white cane. That's the international symbol for blindness. That's what we support. Case closed.

So why are they popping up all over the place?

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On a lighter note, I saw Blue Rodeo recently. Well, I couldn't really "see" them. I didn't have the greatest seats but I did have my binoculars. They were fantastic. It was a terrific performance, and I was amazed at how anyone could get the sound so clear in a stadium.

Before attending a theatre show a number of years ago, I called to see if they had accommodation for those of us who can't see well. Their answer was no. While writing this blog post, I decided to call around and discovered that some places do have arrangements for people with impaired vision. The policies vary from place to place, so it's worth calling ahead.

So, not having made this discovery until after going to see Blue Rodeo, I didn't have the greatest seats for their show.

But, about a week before, I impulsively e-mailed their "people" to see if I could send them checkered eye booster shirts and see if any of them would wear one on stage. I actually got a hold of someone! She was delightful and said that although they couldn't wear it on stage, since they wear stage clothes, they'd accept a shirt. I wanted to wise crack about how I could add feathers or sequins, but didn't. I did however, ask if I could hand deliver it as I'd be at their show in London. She said I could mail one shirt to her office. K, fine, good.

But then we continued our chat and she said the subject matter was close to her heart. It turns out that Blue Rodeo’s bass player, Bazil, has a brother who has low vision. Ultimately she asked if I'd like to bring the shirts, one for each band member, to the stage door at 6:30. I said yes!

I was very excited when I arrived at the RBC Centre and approached the first person I encountered who looked like staff. “Can you tell me where the stage door is” I blurted. The older gentleman looked at me with suspicion. I stood a bit straighter and showed him my package of t-shirts, as if this would give me some credibility. “I was told to meet Bazil at the stage door”. I guess that was all he needed because he told me to continue along this wall to a door marked “media and security”.

Ray walked with me down the side of the building. I think I might have been skipping – it was cold! We found the door and walked in. There didn’t seem to be any media people there but there was a very serious looking uniformed man seated at a desk behind a window in the wall. I told him I was supposed to meet Bazil at 6:30. He didn’t seem to know who this Bazil was because he made me repeat myself then got out his walkie talkie. Before I had a chance to get worried, a door opened and there was Bazil. He shook my hand and invited us in. The serious guy behind the glass protested. I think maybe a pass was flashed but I don’t know. We were allowed in is what I know.

Bazil and Ray and I had quite a nice little chin wag. He was already aware of the checkered eye, something I love to hear. Having grown up with a sibling who has low vision, Bazil can relate to some of the stuff Ray experiences living with me. They both had a little chuckle about watching TV from behind someone sitting within arm’s length of the box. Yup, I was the remote control for my Mom back in the 70s. He was very sweet and posed for a photo with me. Ray snapped only one, so me with my eyes closed will have to do. I’m glad the checkered eye poster is prominent and Bazil looks great.

I’m not sure how much impact this will have on the public awareness effort, but a few more people know about the checkered eye and I think it’s pretty cool that each member of one of the finer Canadian bands has a checkered eye t-shirt.

• 

I’ve been thinking about how to enter the blogosphere.  Rather than fuss too much I’ll just get going.

December is always a weird month for the CEP.  Everyone is so preoccupied with preparing for the holidays; I don’t do much more than process any orders that come in.  So while December’s CEP business wasn’t at all noteworthy, there was of course some social activity.

One of the things I struggle with as a person with low vision is buffet service.  Yes, that most hospitable of times when we go out for a nice meal and find we are required to dish it up ourselves.  Most often I have attended the event with someone with whom I’m close enough that I can ask them if I’m helping myself to Waldorf or potato salad, but once in a while, I grab something I thought was something else.    This hasn’t happened to me for a very long time.  Being 49 and having lost the majority of the sight I’m missing in my teens, I’ve had lots of time to develop coping strategies; when in doubt at a buffet, ask. 

I was grateful to have learned that lesson this December when, at a casual gathering of friends, I found myself seated in front of several platters of inviting finger food.    I felt pretty sure I could identify all the items on the veggie and dip tray, but the cheese tray held a mystery.  It was something dark red beside cubes of orange cheese.  Now I enjoy a cherry tomato with cheese, and as I looked down considering what might be there, I thought an actual cherry might be just lovely with a chunk of cheese.  Luckily for us all I asked the next person who reached for one of these mystery items, and was informed it was pepperoni.  Knowing my friend Gloria, who was hosting the evening, it was probably a very spicy selection.   I am not all that fond of hot stuff and had I made the mistake of placing such a thing in my mouth, I may have behaved like Tom Hanks’ character in "Big" when he took a mouthful of caviar and then let it all spill out and scraped his tongue with a napkin.  Close call!

January means back to business.  This is the time of year when I have to re-qualify our public service announcements for free TV airtime.  This year I’ve had the good fortune to have my friend’s dog Ripper here while I’ve been struggling through the online submission process.  He’s been a very calming influence. I fill in a few fields, open a few drop down menus, find they don’t have any options I’ve ever heard of, and we go for a walk.  Then back to the office for more happy activity. Not that the process is actually all that difficult, that is if you’re as competent with a computer as the average 7 year old is these days.  I, however, am not.  Fortunately, the difficulties were mostly in my imagination and the job was completed with plenty of time to spare before our qualifications expired.