by Miss Ruth
From the Chronicle, the publication of the New Jersey Council of the Blind, April 2026
I’ve been thinking lately about the way our family and friends have had to adjust to our vision loss just as we did ourselves.
Here’s what I’ve learned:
- How loved ones adapt and work with us, and we don’t always even realize it.
- How they teach us where things are as we listen to the stride of their legs and their footfall on the ground.
- How we teach them that we don’t want to feel like cargo as they guide us through the world. We want to be the captain and hope they don’t mind being the ship’s wheel.
That last point was vividly illustrated by the experience of a wonderful young singer named Precious Perez. She’s a working musician who’s in the musical I’m developing, “Bring it Home,” that has a cast and crew populated with People With Disabilities.
Precious plays festivals with her band throughout the year, like this one at the Massachusetts Puerto Rican Day Festival:
(Precious Perez live from Massachusetts Puerto Rican festival)
Often, she’s assigned a human guide who just didn’t get the memo.
In the Spanish-language video I’ve included for those with usable vision, Precious stands, waiting for someone to walk her to the microphone.
On a nearly empty stage, her human guide manages to plow her into both random mike stands, as well as wires on the floor. I found myself yelling at the video (which, sadly, isn’t audio-described.) “Dude! You had one job! Don’t walk her into all the obstacles! Sheesh.”
Interestingly, the human guide’s incompetence is a form of communication.
He’s saying, “I guess I’ll help, since you asked me, but I won’t take the time to ask what you need me to do.” So yeah. That kind of “help” isn’t helpful.
On a side note (hey! That’s a musical pun?) Precious recorded a song for my musical called “Make Our Way Home“. I’ll share it here in a link.
Precious has learned how to roll with the punches when a human guide does the opposite of his job. She even laughs about it!
That’s a skill we’ve all developed, although sometimes it’s hard to laugh when the ones we’re relying on don’t take care of us properly.
I’m fortunate, in that my grown son, Coleman, is living at home so he can help me when I need help. He knows not to step in if I seem to be struggling with something unless I ask him to. “I want to do as much as I can for myself in case you’re at work. I have to know how to do things independently,” I’ll tell him.
I’ve recently realized that, although I still have some vision, I’ve been using echolocation regularly. That is the practice of locating objects based on reflected sound, which is a method also used by bats and dolphins.
My right eye is blind, so if Coleman walks into the room on my right side it may startle me.
Over the years, we’ve developed a makeshift system of echolocation.
I’ve asked him to make a clicking sound as he walks down the hall so I know he’s about to enter a room.
It didn’t start out as a system of echolocation. When he was born, I started to wink and click at him, as a way to say, Hey kiddo! You’re the light of my life.
Over the years, it’s become a way for both of us to let the other know where we are in the house.
Coleman also knows where I am in the house in the morning from other types of clicks. The tap-tap-tap clicks of the stove as I turn the burner on to heat water in the kettle for my coffee. The clicks of my fingers typing away on the computer, as well as the click of the mouse. The click as I turn the dial on to start the clothes washer.
He can tell where the cat is, too, by his clicks: Squeaky’s toenails tapping as he walks on the wooden floor, the tap sound the water in his bowl makes as he laps it up.
Two clicks in our own secret language means I love you, or Thank you, or really just a general, I’ve got you. I suppose you might say it’s our version of Aloha!
So, in my house, you’ll know where I am from the clicks and tapping sounds. It’s a form of communication.
Now, onto a subject that is very important to communicate to others clearly: expectations.
- My expectation is that I will be “seen” even though I can’t see perfectly.
- My expectation is that it’s okay for me to take up space in society, even if society doesn’t always make space for me as a Person With Disabilities.
- My expectation is to be treated respectfully by everyone with whom I interact. If they don’t adhere to this minimum basic standard, I will treat myself with respect by disconnecting from them.
These expectations may seem obvious, but with the elimination of many regulations that supported the community of People with Disabilities, I thought it important to reiterate them.
Truth be told, many organizations with the terms “Blind and Low Vision” right there in their name never fully met our needs anyway. We’d have to chase them to make an appointment or even get them on the phone. Resources were often theoretical at best.
So now that we know all the bureaucracies and governmental agencies are losing sight of our community, as it were, it’s a good time for some self-reflection.
I thought I’d put this into my article because it’s been on my mind for some time, but I wasn’t sure how to work it into a quarterly meeting. It’s an out-there idea, but heck! Our community has always been out-there. An outlier. Out of sight (!) and out of mind of the powers-that-be.
So what do you say we change the paradigm and start re-vamping the way we do things?
Here’s my audacious idea for your consideration: Let’s pay our officers, board members and heads of projects for the wonderful work they do for our community.
I know that we’ve historically been a volunteer organization, and that people are expected to do things out of the goodness of their hearts, but the time is right to do things differently.
If we pay our leaders who show up and get things done, we’re sending a message.
- We value the work they do.
- It sets us apart as an organization.
- It addresses the issue of unemployment, underemployment and subminimum wages that disproportionately affect our community.
You might say, well, smarty pants, how do we pay them? We’re not exactly flush with cash!
I’ve got a feeling that people getting paid to volunteer will find a way to drum up more donations! Also, it’s just the right thing to do.
Getting paid to volunteer sounds like an oxymoron, but really, it’s part of a new paradigm.
It is an acknowledgment of the reality that most people who are blind or have low vision struggle to make ends meet.
It’s a way to show appreciation for all the efforts these kind souls have put into making our lives better.
It’s about challenging the status quo and acknowledging that the old paradigm never really did address our needs.
It’s time for a new paradigm.
I think that, in order to change the world, we need to start at home.
That’s why, in a similar vein, I’m determined to pay the cast and crew of my musical. For the past year, they’ve voluntarily helped me work on the story and songs, but I think they should be paid for the work they’re doing.
The fundraising concept I’m using to do this is to post a song on Spotify that I’ve recorded called “Midnight Train to Jersey” — a parody of “Midnight Train to Georgia.” People can pay whatever amount they would like for the song to fund the musical.
Everyone in the project identifies as a Person With Disabilities. The play is about accepting yourself as you are, and the fact that you are whole and worthy. You may be missing sight or a limb, or a partner in life, but you are no less valid than anyone else.
I’ve tapped into the enormous talent pool of the community of People With Disabilities, which is a good segue into discussing a healing modality that I’ve used to release trauma from the past called Tapping.
In my musical, the main character will teach the audience how to Tap as she sings them a song.
For those who are interested in yoga and meditation, Tapping is like doing acupuncture with your fingers. As you tap on certain areas of your body called “meridians,” it is said that the energy or “chi” that no longer serves you is released.
I think it’s time for us as a community to release the old way of doing things and take a look at which customs and norms serve us well, and which should be discarded.
The thing that is already working about the Council as an organization is the sense of community and camaraderie. Of helping each other to locate resources and to encourage those going through hard times.
The thing we can take a stand on and set a new standard for is the fact that these committed officers, board members and project leaders are working long hours, sometimes under stress, and are not getting paid.
If we were working at a company, we would get a paycheck, vacation days, health benefits, and in some cases, paid mental health therapy.
In the volunteer world, no one gets paid, there are no company benefits, and the people who always give their time end up exhausted and overextended.
It happened to me a few years ago, and I finally stepped back and slowed down. God got my attention and put these words on my heart: “No named roles,” for all my volunteer projects. It meant, no more roles that were titled, such as president, board member, project lead. It meant that I needed to find balance and only offer to help when I had extra energy.
Disability pay equity has been on the radar of advocates for a long time.
The institutions we counted on and the agencies administering regulations that protected our interests have made it clear that we are not on their priority list.
Why not take a new approach and show up for ourselves and each other in a way that those entities don’t?
We should pay our officers, board, and project leaders. It’s the right thing to do.
We’ve all been figuratively tapping along on the path with our canes (if we use them), or tapping our fingers waiting for AccessLink to pick us up, or feeling tapped out from all the obstacles we encounter just trying to get from Point A to Point B.
Why not tap into the deep well of goodwill within our own little village and help each other in a substantive way?
Even if this turns out, in the end, to be an impossible ask, I do hope it opens a conversation. If we have what we need in life, it will allow us to do good things for the community in a more relaxed state.
I believe this is the paradigm society will be shifting into soon and people of goodwill will again take the lead. Being appreciated and remunerated for your time and talents will allow you to breathe, be, and receive the blessings you so richly deserve. From that centered, peaceful place, you can give of yourself to others without depleting your own reserves.
