Thought Wheel

From the mind of Ann Chiappetta

The Print Barrier

| Filed under blindness Relationships

💻  ⌨

The day-in-day-out goings on of electronic correspondence has become part of our lives. It’s a given and expected piece of the daily routine like brewing the morning coffee and checking out the news. We read and reply to email, text messages, manage tasks in calendars, and so on. Some of us still like to immerse themselves in the printed pages. I can still recall the guilty pleasure of pouring over a tabloid while waiting at the grocery store check-out line or writing a letter adding the stamp and dropping it in the mailbox.

 

But this is 2022 not 1982. In the twenty first century we depend on electronic exchanges, it keeps us connected like the newspaper and print magazines used to do.

 

Years ago, when I first begin losing my vision from retinal disease, I learned how to acquire the ability to hear text with artificial speech with a program called JAWS using a computer. I’ve since lost all my vision and have been using devices like a smart phone with voice over and can choose from a dozen accents from US English to South African.  My family tells me I listen to the rapid speech at such a level that it’s hard to understand it. I laugh and think, oh, I take pity on you light-dependent people. I speed-listen like the old   Evelyn Wood speed-reading advertisements on TV.

 

One day last week was an exception. A lapse of reliability, what I think of as “cyber gremlins”, struck and a week later, it still remains a problem. The origin of the barrier isn’t clear but the end result is the same: I cannot access a document Germain to my work. This means I either have to spend up to an hour of troubleshooting or give up and print it so I can scan and read it with another device.  This isn’t the frustrating thing, either – I am fortunate to have a back-up plan. The frustration appeared at the beginning; I could not click on the PDF attachment and read and reply like my peers. Because I am blind, the process of proficiency and fluidity in a task that should only take five minutes, for me, hasn’t even been accomplished.  I experienced this fairly often when I was employed, and it effected my overall productivity.

 

The overheard conversation would go like this: “Well why can’t she read it?”

“something about the document not being sent the way she needs it,”

“Send it again,”

“We did that yesterday, it didn’t help,”

“Maybe she needs more training with her software?”

“She says that’s not the problem, the problem is how the document was formatted,”

“What does she mean by that?”

“I don’t know, something about text and no pictures or something like that,”

“Go back and ask her if we can print it out instead,”

“Okay but you do know she won’t be able to read it,”

“Have someone read it to her, then,”

And so on …

 

Going back to the PDF, I’d like to be the first person to respond and not the last one because I had to undergo assistive technology calisthenics in order to attempt reading it. At times like this, I think I’ve traveled to an alternate reality; having to ask for help and educate the sender of the document is my burden and there isn’t even one glimmer of hope in the vacuum of space.

 

It is a bit unsettling to know the world is set upon a highly visually-driven stage and if you can’t see, it is inevitable one will miss out on what drives the masses.   Sure we have increased the intelligence and proficiency of assistive technology and tools like improvements of computer software and hardware, audio description in the movie theater, streaming services and on major television networks; people with print disabilities have even made a significant contribution in the audio book industry, which is experiencing exponential growth.

, but the reality is it will take many more years, sweat equity and advocacy dollars to mind the accessibility gap for people who are blind and continue closing it. Changing attitudes is slow. People who can see don’t think about people who cannot. It may be, to some, a gross generalization but to someone like me, it’s a reality.

I state all this to sum up the personal experience: I was the only one in a committee who could not respond to a document sent to the group because I could not read it visually. This is why I ranted and now it’s over and I just feel sad, let down and a little guilty I even had to ask for an accommodation in the first place.

I wonder if these folks assume someone like me either couldn’t or worse, wouldn’t be able to manage civic responsibilities and therefore the documents didn’t need to be formatted responsibly?

 

Five years ago I stepped down from a local board of directors because despite asking for accessible documents, I received excuses instead. When I mentioned the ADA and that I felt discriminated against, I was suddenly treated differently and I left because of feeling like the accommodations were somehow a burden to those who had to make them.

I know life isn’t fair, I know we all struggle with issues based upon our lives, health, relationships, and finances or employment status, racial or gender biases, and so on. I would like the accommodation process to be better, to be more fluid, part   of the norm. If you are reding this and would like to build upon your knowledge of accessibility for people with print disabilities, drop a question like, “how do I make a blind-friendly adobe document?” in the search engine of your choice and you will be rewarded with a plethora of resources.  Your efforts won’t cure the world of the ongoing accessibility gaps but it could help someone else be able to access a document and be the first person to respond to a group email and not be left behind.

 

Annie sitting at desk showing laptop and other equipment.

Annie and her office and equipment.

 

 

Benefit Concert for Blind Ukrainians

| Filed under blindness

Hello all-

I am taking part in this fundraising event — supporting a benefit concert for blind Ukrainians during this unstable time in their country. The event is legitimate and  I am asking each of you to share it with your tribe.

My local blindness advocacy group, WCBNY did not even hesitate to agree to donate dollars. If blind folks don’t help other blind folks, what’s the point?

We all shared the same thought: what if this was our Country and we needed help? Every bit counts towards supporting the people who will need it.

 

Please direct your questions to the persons mentioned in the message below, not back to me.

From: https://mushroomfm.com/withyou

 

We’re With U. Blind performing artists’ Virtual Benefit Concert for blind Ukrainians on 16 April

Welcome

On 24 February, Russian forces invaded Ukraine. The death toll is mounting. Families have been torn apart as some seek refuge in other countries, while others stay to fight for their country’s freedom.

One of the consequences of war is that it results in life-changing impairments, including blindness. Another is that war leaves those who are already blind vulnerable and at risk.

The situation has made many of us feel helpless and heartsick. But there are things we can do, ways we can help.

On Saturday 16 April at 2 PM Eastern time in North America, 7 PM in the UK, that’s Sunday morning at 4 AM in Eastern Australia, 6 AM in New Zealand, the global online blind community is joining together for We’re With U, a benefit concert to help blind people who have been affected by the atrocities in Ukraine.

If you’re a blind performing artist, you know that music has power. This is your chance to perform to a worldwide audience while lending a helping hand to those who desperately need your help. If you appreciate great music in a range of styles, this is your chance to listen to some of the best the blind community has to offer, while also donating to support blind Ukrainians.

Every cent raised will reach organisations assisting blind Ukrainians, thanks to our partnership with the World Blind Union’s Unity Fund. World Blind Union is the global organisation representing the estimated 253 million persons who are blind or partially sighted worldwide. They are working actively with organizations in the area who are providing support to Ukraine. With their support, you can be sure that the generous donation you make will go to a project that makes a difference.

We also thank the National Federation of the Blind for their considerable moral, infrastructural and communications support for this project.

The below sections of this page have further information and is being updated regularly.

How can I listen

In the spirit of working together that has been the hallmark of this event, many Internet radio stations and channels in the blind community will broadcast the We’re With U concert. Chances are that if you listen to an Internet radio service of and for the blind community, you will hear the event there. Please check with your favourite station, and encourage them to carry We’re With U if they are not yet signed up to do so.

You can of course hear We’re With U right here on Mushroom FM. Mushroom FM has an accessible online player on this website. It is available in all radio directories including Apple Music. It has its own Alexa skill and Google Home action. You can also tell Siri to Play Mushroom FM.

How long is We’re With U set to run for?

We don’t yet know. Artists have until 8 April at 11:59 PM North American Eastern time to send in a contribution, but what we can say is that it is shaping up to be a showcase of talent that will last for some hours. So, be prepared to settle back with your best speakers, a beverage or two, and a keyboard to type in your credit card number to donate to Ukraine. Consider your kind donation the price of your virtual ticket to this event.

How do I donate?

Throughout the We’re With U concert and a little ahead of the event, we will give you a URL where you can donate securely with all major credit cards. Everything you give goes to blind Ukrainians who need our help.

Is there a social media hashtag?

You bet! It is #BlindWithU. Note that the U is an uppercase U, and not the world Y O U. Since we can’t bring everyone together in a stadium for this event, we encourage you to use the hashtag #BlindWithU during the event, and right now if you want, to discuss the concert.

I really want to donate to this, but I have trouble with credit card forms. Is there some other way?

We are working on the possibility of taking donations via phone and hope to have more to say ahead of the concert.

I want to perform. How do I register my interest?

That’s fantastic! The more the merrier. The event is being produced by Jaffar Sidek Ahmad, who came up with the brilliant idea of the We’re With U event and has seen it expand into the international concert it has become.

You will need to provide Jaffar with a high quality recording of your performance by 11:59 PM North American Eastern time on 8 April. We also ask that you preface your performance with a brief message that introduces yourself and tells us about why supporting blind Ukrainians is important to you.

If you have heard well-remembered past events in this genre, such as Live Aid, you know that happy music is OK, as are cover versions. Our aim is to raise as much money as we can by giving people excellent entertainment, so your contribution neither has to be original nor does it have to have a war theme. The key thing is that we entertain people, encourage them to stick around, and give what they can. So, whether you’ve written an original composition or you’re singing to a backing track, you are welcome to share your talent with the world for this important cause.

Please discuss what you’d like to do, by sending an email to jaffar.

I am part of an Internet radio station/YouTube channel/Other platform that can stream. Can we rebroadcast the event?

We welcome approaches from any partner who would like to carry We’re With U. The event is audio-only, and you will need to be able to relay a stream in MP3 format.

For more information or to express your interest, please contact Jonathan Mosen, who will be the MC for We’re With U, jonathan@MushroomFM.com  . This will also ensure you get important updates relevant to those who are carrying We’re With U.

Copyright © Mushroom FM 2022.

 

Reactions like this are Real

| Filed under blindness Guide dogs Relationships

We walked into the holiday party. I was already anticipating a good time with friends after the imposed bouts of social isolation as a result of Covid.

 

We were greeted and directed to our table by a pleasant staff person. Bailey, my guide dog, was excited to see our good friends and greeted one of them. I pulled out my chair, settled my coat and bag and asked Bailey to lay down under the table when the two women to my right became hysterical upon noticing him.

“I can’t stay here, the dog will eat all my food,” and “That dog is going to bite me,” and “I can’t relax with that dog so close,”.

My heart sunk and I put on the blank face.  The face that tries to hide the disappointment and frustration brought on by ignorance and fear of my guide dog by others.

 

My friend tells them the dog won’t do that, it’s trained. Still they go on and I feel the anxiety build. Will I have to leave? I do my best to ignore them, but one person continued to go on about “that dog, will bite me,” “I can’t stay here with that dog,”, etc.

I grope for my water glass and wait it out.

I don’t want to be here, don’t want to eat, I feel like these people just stole it all from me.  I almost got up to leave, was close to tears but I refused to let them see me cry. I had a right to be there, too, and because I am blind, my guide dog did, too.

 

a person sitting on the other side of our table spoke to the person who was now almost yelling about “that dog,” — and quieted them.   It took me some time to refocus on my meal and my friends. My guide dog curled up for a nap under the table.

The rest of the afternoon was fun thanks to a stranger who knew how to handle another stranger’s fear of dogs.

 

The thing is even though I stayed quiet, I was angry. Being subjected to reactions like this, while infrequent, still happen and still affect me in a powerful way. I felt confused and hurt by their reactions.    I hope they will remember how “that woman with the dog,” kept her cool and shared a meal. I hope they will one day understand how much it cost me personally to shelf the feelings and get past their outburst.

Annie with pink mask and Bailey close up

Ann and Bailey on bench: Both looking straight on

 

 

Old Poems Like New

| Filed under blindness Poem Relationships Writing Life

I began writing poetry in earnest after finding out I was going blind, in the early 1990s. Looking back, the poems I wrote during this dark time was a way to cope with the inevitable grief and loss I felt, and would feel, for a long time. Progressive vision loss infiltrates one’s sense of hope and resiliency,
Two emotional Aspects Which Appear in many of the poems written from the 1990s. The poems are also an inventory of sorts, and, as I become reacquainted with them, I am, in turn, becoming acquainted with my feelings and emotions during this time of fear, depression, and anger. I also discovered I’ve grown beyond these feelings and emotions and have learned to accept my disability and embrace the creativity and how much healing I’ve done since then.

Here is a song I found, written for a friend (really).

The Child Inside
Song lyrics

By Ann Chiappetta

family devotion died
the day he went away

The child inside
still cries when you sleep
The pain
makes you feel incomplete

He’s made a mess of your memories
He can’t come back into your life
And though you deny it
the reality cuts Like a knife

The child inside
still cries when you sleep
The pain
makes you feel incomplete

Don’t try to replace him
Sometimes lovers walk away, too;
discover why your heart
desires demons dressed in blue

The child inside
still cries when you sleep
The pain
makes you feel incomplete

2000

Guide Dog Lifestyle: Is This What You Want?

| Filed under blindness Guide dogs Relationships Writing Life

Annie and Bailey outside the HotelWorking with a guide dog brings along perks, like being offered the aisle seat at events, being given the extra leg room seats on trains, and pre-boarding when flying. These, of course, are the obvious advantages.

I would most likely be presented with most of these as a white cane user when traveling without a guide dog, although, perhaps the extra leg room seats would not be part of it. Traveling with a disability can be challenging enough, thank-you.

My dog guides me safely while also assisting in softening the stressors of traveling. A dog also helps with engaging in social events.

A few of the little-known perks are humorous, along with being practical. For instance, my dog, like many other guide dogs, is an expert at finding friends and family during parties and in crowds. Both my current dog and my retired dog have found my husband or other guide dog users countless times. They are creatures of habit and will most likely show the handler familiar locations and individuals. I think of it as, “Hey, is this the door you want? Or Hey, we know this person, maybe you want to talk to them again so I can say hi to their dog?

The most recent time I recall being surprising as well as useful was during a convention. Upon exiting the elevator, Bailey began pulling harder and I knew he was on a mission. He brought me up to my friend and her new dog. The same friend who trained beside us for two weeks when I first got Bailey. It was very smart, for a dog. 😊 I didn’t even think he would remember her, but he did. We also had this sneaking suspicion Bailey and her new dog, (not the one who trained with us) and Bailey knew one another from the kennel, acting like old friends.

Some folks say being a guide dog user is too-time consuming, that it’s all about the dog, and the extra attention is difficult to manage. Personally speaking, I prefer the social and travel advantages my dog provides. It far outweighs the annoyances.
Annie and Bailey outside the Hotel

Maybe a Sign Would Help?

| Filed under blindness Guide dogs Relationships Writing Life

Today was the monthly meeting for the Westchester Council of the Blind of New York. We hold it at a house of worship, and we are very fortunate to be getting our space for free. While we were setting up and listening for members to come down the steps to our meeting room, a man appeared,
“Are you having a meeting for blind people?” he asked, sounding a little annoyed.
Yes, we said, this is where our meeting is.
“Oh,” he replied, “There are some people coming here, and they don’t seem like they know where to go, maybe you should put up a sign,”

Yup, folks, after he left, my colleague and I broke up laughing, then shook our heads, feeling quite sorry for the ignorant sighted person. We went to find our wayward members and led them to the room.

We could have felt angry, or upset, but this is nothing unusual for us. We did not allow this man and his inadequacies or annoyances to negatively affect us.
Furthermore, I don’t know how I can state this eloquently , but, well, a sign really won’t help the blind folks, only folks like this man, who came in, did not greet us or even introduce himself; by the way he sounded, he felt somehow threatened by the “blind people”, or he would have brought them with him instead of coming to the room to complain.

If you are still reading, this is more or less an average example of what we encounter from day to day. Sometimes we fair better, some days, the ignorance and uncaring attitudes seem to be everywhere. It’s no wonder 70% of employable blind people are not working; that people who lose vision and are over 50 struggle to remain independent; why guide dog users who are blind are denied ride share services 1 of 3 times despite policies adhering to the Americans with Disabilities Act laws.

We are a powerful group and yet we are a minority still grabbing and pulling ourselves up the wall of equal access and opportunity. We must help one another so we can be the change-makers, in our communities, Nationally, and worldwide.

Most importantly, don’t be like this man who did not say his name and was so off-putting with an attitude of annoyance; after reading this example, if you encounter someone who is blind, lost or looking for directions, work with them, ask how best to help, and go with it.

Are Those French Fries?

| Filed under blindness Guide dogs

Being a guide dog handler is probably the best choice I’ve made since going blind. It gives me much more than just a canine partner and increased safety. Sometimes it even brings comic relief.

A few months ago, I left work and walked around the corner to relieve my guide dog, Bailey. We began the usual routine, and then he started to do something odd, he lay down. I bent to try to make sure he wasn’t eating anything, and, being a Labrador, he sure was munching on something. I pulled him away and made him spit it out but he’d already swallowed it. I needed to know what was all over the sidewalk, so I got out my phone and called AIRA. The agent identified the scattered items through the camera on my mobile phone as French fries, to my relief. If Bailey was going to be corrected for temptation, I needed to know what had done the tempting. The agent’s quick and accurate scan of the area confirmed it was something that would not cause Bailey any harm. This helped me breathe a sigh of relief; it was only a few French fries. We could deal with it.

This is also a reminder that while Bailey has an advanced canine degree as a guide dog, he is still a dog and will give into temptation. The counterbalance to this is knowing that when he does his job, when he pulls us from a driver turning right on red as we try to cross a street, or when he shoves me away from the speeding bicyclist hurtling down the sidewalk, a few French fries is acceptable.