So, you have a friend with nystagmus. Nice! Why not take a minute to learn some basic information about nystagmus? This resource will focus on what you should know to be a good friend, from the perspective of your new nystagmus friend.
ANN’s guide for friends of people with nystagmus.
My Friend Has a Driver’s License, So Their Vision Must Be Good, Right?
Not exactly. It is true that some people with nystagmus can drive. Driving may still be a difficult task. They may not like to drive, and might prefer not to, if possible — particularly if a normally sighted driver is an option. In addition, your friend may be able to drive yet still have issues with other life situations.
Finding You in a Crowd, Restaurant, Mall, or Sporting Event
People with nystagmus have a difficult time distinguishing faces, so when your friend arrives in a crowd it may be difficult to pick you out. In these cases:
- Plan a specific place to meet — for example, on the right side of the flagpole near the front door.
- Tell them what color clothing you are wearing so it is easier to spot you.
- Call or text them regularly about where you are (talking is better than texting). Keep communicating where each of you are.
- Watch for your friend, leave your spot, go get them, and let them follow you back.
Your Friend Probably Didn’t Just Snub You
People with nystagmus often have trouble spotting people in a crowd or recognizing people at a distance. Even though you saw your friend, and maybe smiled, nodded, or waved — they might not acknowledge you. Most likely they didn’t see you, or didn’t recognize it was you.
Nonverbal Communication
People with nystagmus have trouble seeing facial expressions. If you’re trying to give “the look,” they may not be able to see it, or may miss it entirely.
Verbalize what you are feeling — for example, “Can we change topics?” or “I would like to head home now.”
The Big Board: Fast Food Restaurants, Movie Theaters, Airports…
These boards can be difficult to read. Your friend may request a print menu or take a picture with their phone to blow it up and read it.
Ask Your Friend If They Need Help — But Don’t Be Offended If They Don’t Accept
Just like sighted people, visually impaired people don’t always need help. Your friend may want to do things independently, or at least try to at first. Many times, they are more than capable of doing so. There are times when they may need some help, but this isn’t all the time. Context matters: if they look like they’re struggling, ask; if they seem fine, don’t.
Sometimes people have a tendency to grab and take a visually impaired person where they think they should be going. This isn’t helpful and can be rather frightening (an exception might be avoiding losing each other in a crowd). Similarly, people sometimes take over a task a person is doing, preventing them from doing it themselves — this really isn’t helpful.
Don’t Assume
Assumptions can come naturally because of stigmas or misconceptions many non-disabled people have. Such assumptions can be very frustrating for those who are visually impaired.
Don’t assume your friend can or can’t see something. Even if you’ve been around them for a while, only they know what they can see. The severity of their nystagmus, and therefore their vision, can change with factors like tiredness, stress, or how much is on their mind. If you think they might need help, ask first.
If you’re unsure of something, ask. Most visually impaired people are happy to answer any questions you might have, within reason. There’s a lot of curiosity surrounding visual impairment and disability, so it’s only natural people have questions. Think about the question you’re asking — is it invasive? Is it personal? Then think about your friend — are they open to sharing, or reserved? Whether you should ask is a judgment call, on a person-by-person basis.
Treat a Visually Impaired Person Like You Would Anyone Else
Speaking to us like you would anyone else, and treating us like a regular human, isn’t giving us special treatment — it’s simply being polite.
Don’t Change Your Vocabulary When Talking to a Person with a Visual Impairment
It is pretty rare for a blind or visually impaired person to be offended by someone saying words such as “look” or “see.” Many non-disabled people think we find these words offensive, but we really don’t. You don’t need to change the language you use when talking to a blind or visually impaired person, or any disabled person for that matter.
Give Detailed Descriptions
It’s rather annoying when someone tells you that something is “over there.” Where? Is it to the left, to the right, straight in front of me? Describe things in detail, such as “it’s to your left” or “in front of you.”
Resources supported by a generous grant from the Delta Gamma Foundation.
