This article will appear in the Summer 2025 Edition of the New Jersey Council of the Blind’s publication, The Chronicle
Governor Phil Murphy is leaving office, and my “quick and dirty” take on his legacy is that he was great on the arts, but fair-to-middling on Disability Community matters.
I was thinking of attending an event at which Governor Murphy would be honored for his support of the arts last week, but I knew I had a couple of bones to pick with him, and would probably end up giving him a piece of my mind. I decided against going, because it was hosted by a group I respect and I didn’t want to rain on their parade.
- If PASP (a state program that funds a personal assistant for those with disabilities who work, volunteer, or attend school at least 20 hours per month) participants are required to work independently as part of the program, why isn’t the application in a format accessible for those of us with vision loss so we can complete it by ourselves?
- Was anyone in the community of People With Disabilities consulted before you decided to ban plastic straws, which many rely on to consume sustenance and nutrition?
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Didn’t you realize that banning plastic bags would actually harm the environment as we’ve now all got so many “reusable” bags that we discard them and they end up in landfills?
Like Governor Murphy, many claim to want to help our community, but when the rubber meets the road, it is often only lip service.
Then there are others who really want to lend a hand, but don’t always know how. That’s why it’s important to find the right way to advocate, even if an issue is really pressing.
At an event held recently by an organization dedicated to making the arts accessible, the photographer asked those of us who were on the committee to take off our nametags, presumably for aesthetic reasons.
Then he proceeded to bark at me, “You there! Can you turn her?”
I almost did a Robert DeNiro on the guy, but my Lyft was waiting outside, and this group picture was taking forever. “Are you…talking…to me?!?” I said in my mind.
He was ordering me to “turn” my blind friend who was standing next to me. I have some vision, so I could see he was pointing to me. “Can you turn her?” he asked impatiently.
Normally, I would tear him a new…aperture. That’s a photography term!
But I didn’t want to miss my Lyft, because AccessLink’s Rider’s Choice 2.0 voucher would provide me with a discount of $30 per ride. I’d have to take that Lyft to my son’s former school, which is a pick-up point for that program, and my son would take me home from there. He’d be on his lunch hour, so I was really threading the needle already, standing here, waiting for a photographer to take a picture.
To take a picture. You know, for people with vision.
So, a group of us with vision loss were waiting for a photographer to move us around like chess pieces so that those with full sight would have something to remember us by.
At the time, I was just so stressed about possibly missing my Lyft, this enjoyable event was somewhat diminished in my mind.
I did end up missing my Lyft, and my son couldn’t wait any longer for me at the school, since his lunch hour was over. I had to wait for another Lyft and pay full price, which was $78.
That next Lyft driver arrived and texted me: “I’m here. Where are you?” I was waiting in front of the building, but he was nowhere to be found. It turns out he had pulled up to a different entrance of the building and I had to guide him to find me. “I think I’m next to a statue of Zeus or something,” I told him on the phone. I started waving my hands. “Can you see me?”
And oftentimes I think the same thing as I face various situations. You say you want to help, but can you really see me?
After the event, it took me a good couple of weeks before I was in the right state of mind to send an email to the organizer. I knew that it had been a marvelous day and I’d gotten to spend time with friends, including Wanda, whom I adore, but don’t get to see in person that often. The panel of presenters was terrific. There was entertainment, food. The whole nine.
Luckily, when I finally sat down to write the email, I knew that the person I’d be sending it to believes in our community and wants to improve the lives of people who are blind or have low vision.
He was grateful for my feedback and pledged to make changes for the next event. His organization even reimbursed me for my missed ride home. I was so glad I’d taken the time to breathe before I emailed him.
When someone is an ally and listens to you fully, you feel seen.
You know that, even if you can’t see the world well, if at all, there are still kind, decent people in it who want to open it up to you. And once you feel seen, it’s that much easier to see what others are going through and help them if you can. Grace and goodwill are always the best way to change the world.
