So, someone in your life has nystagmus. Nice! Why not take a minute to learn some basic info about people with nystagmus? This resource will focus on what you should know to be a good companion, from the perspective of your new nystagmus friend.
Nystagmus typically causes some level of visual impairment, which can affect how people with nystagmus navigate daily life. Here are some tips and insights that will make living with nystagmus more comfortable for your friend. Although this is written in terms of a friend with nystagmus, it is equally applicable to siblings, family members, significant others, etc.
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.
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 from the crowd of people. In these cases:
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 or nodded, or even waved – they might not acknowledge – even if they looked right at you. Most likely they didn’t see you, or didn’t recognize it was you.
People with nystagmus have trouble seeing facial expressions. If you are trying to give me “the look”. I may not be able to see you, or I may miss it.
Verbalize what you are feeling. For example, “Can we change topics?” or “I would like to head home now.”
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.
Just like normally 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. Granted, there are times when they may need some help, but this isn’t all the time. Context is important: if they look like they are struggling, ask, if they seem fine, don’t.
Sometimes, people might have a tendency to just grab and take a visually impaired person where they think they should be going. This is not helpful at all and can be rather frightening. (An exception might be to avoid losing each other in a crowd.) Similarly, people sometimes take over the task that a person is doing, preventing them from doing it themself; this really isn’t helpful.
Assumptions can often come naturally because of stigmas or misconceptions that many non-disabled people have. Such assumptions can be very frustrating for those who are visually impaired. Not making assumptions makes the situation so much easier for everyone.
Don’t assume your friend can or can’t see something. Even if you have 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, then ask! Most visually impaired people are happy to answer any questions that you might have, within reason of course. You don’t learn if you don’t ask right?
There is a lot of curiosity surrounding visual impairment and disability so it’s only natural that people have questions. Think about the question that you’re asking: is it invasive? Is it personal? Then think about your friend. Are they open to sharing, or are they reserved? Whether you should ask is a judgement call, on a person-by-person basis. Some questions can often seem rude and might put your friend in an uncomfortable position.
Speaking to us like you would do to anyone else and treating us like a regular human is not giving us special treatment, it’s simply being polite.
It is pretty rare for a visually impaired person to say that they are offended by someone saying words such as ‘look’ or ‘see’. Many non-disabled people think that we find these words offensive, but rest assured, we really don’t. You don’t need to change the language you use when talking to a visually impaired person, or any disabled person for that matter.
It’s rather annoying when someone tells you that something is, “‘over there.” “Where?” “It’s right over there!” That’s not helpful. Where is ‘over there’? Is it to the left, to the right, straight in front of me… where is it? Describe things in detail such as ‘it’s to your left’ or ‘in front of you’.
With these simple tips, you can make life more pleasant for your friend, so that they can relax and just enjoy your company!
