My Invisible Disability

I don’t use a white cane or a wheelchair or a walker. People don’t know until I tell them that my vision differs from theirs. They think I’m normal.

I am, with 1 exception: my vision. The reality of that hit me again on a recent Sunday.

A recent accommodations issue

We’re doing a new directory for our church. That means new photos.

The photographer put my husband and me against a wall that was the background for all the photos. It was cheaper than shooting indoors, which would have required special lights. It also meant that I was forced to look almost directly into the midday Florida sun.

I explained why I needed an option. The response was an incredulous look. So I suffered through the time. I accommodated because they wouldn’t. I can only wonder about the resulting image.

Low vision is an invisible disability

It is astounding that well-educated people know so little about vision loss. My guess is that 90 percent or more of the population think it means total blindness. "How can you have vision loss," they seem to think, "if you’re not wearing dark glasses, using a white cane, or being led around by a guide dog?"

Our low vision is an invisible disability.

Living in a community of older adults

Southwest Florida is the land of the old. Something like 60 percent of the people in our city are over the age of 65. There are doctors of every specialty that treat this aging population.

Many public facilities are equipped with technology to help people with hearing loss. With properly equipped hearing aids, you can connect to a "loop" system and get clear sound.

As far as I can tell, none of those institutions have accommodations for people with vision loss. Our church has a large print program, but the hymns are reproduced in the same small type used in the hymn book. That’s in a congregation with an average age over 70.

The ADA's definition of disability

In researching for this article, I looked at how the Americans With Disabilities Act defines a person with a disability. It says that it is "someone who has a physical or mental impairment that substantially limits 1 or more major life activities, has a history or record of such an impairment (such as cancer that is in remission), or is perceived by others as having such an impairment (such as a person who has scars from a severe burn)."¹

Low vision seems to fit that definition. While the ADA requires a whole range of places of public accommodation to make their products or services accessible to people with disabilities, religious institutions and any businesses they operate are exempt from the law.²

Many businesses do not accommodate us

Just because there’s a law doesn’t mean that it is enforced. In fact, there is no agency designated to do so. Even if a theater or museum fails to make an accommodation for someone with low vision, there is no easy recourse. How many people need to complain to an orchestra of an opera company about the lack of a large print program before there will be action? So we deal with phone-based magnifiers and flashlights.

Our disability is invisible even in the institutions that we pay to serve us. I was astounded, for example, to find large print on a cereal box. Someone at a major corporation had decided their low-vision customers were worthy of service.

Because businesses do not accommodate us, we are forced to accommodate them.

We need to start speaking out

What are we to do? What am I to do? We need to start speaking up and out for ourselves. Negative reviews on social media sites get more attention than you might imagine. We can join and support organizations that advocate for our needs. And to walk the talk, I’m sending a letter with a copy of this article to the people in charge of our local church. When I find a public accommodation that isn’t accommodating to my low vision, I’ll let them know about it. And I will ask for help, too, when I need it.

The height of the Baby Boomer generation is coming. That means millions more people with age-related macular degeneration (AMD). The pharmaceutical industry is responding with new treatments. Time for the rest of our society to follow suit.