I’m often one of the first people that people at my school meet that has low vision or that lives with a chronic illness. While there are several other students that have vision loss or that live with other invisible disabilities, I have chosen to become a prominent advocate and be open about my disability experience in order to help others, and often receive questions from new friends about my own experiences or if there is anything they need to do to make communication or hanging out easier. Here is how I talk about disability with new friends or in casual environments with people in my age group.
I’m not afraid of the word disabled, and my friends shouldn’t be either
While I do know some people who are uncomfortable using the word disabled or disability to describe themselves or their condition, I am not and actually prefer to have people use the word “disability” over other terms such as handicap, differently abled, or similar. I also have no preference for person-first vs identity-first language, and show this to new friends by using these terms when describing myself or talking in general. Most people pick up that I am using these terms or phrases in conversation and in turn are less afraid to use them themselves.
When meeting a new friend, I am less likely to correct words or phrases that they use to describe disability unless they are wrong or are making an incorrect assumption that could be a problem later on. For example, if someone repeatedly refers to me as blind, I will correct them and say that I actually have low vision or am legally blind with glasses. I have no problem with the word blind in general, but because it can lead to the assumption that I have no usable vision, I will correct people so that they aren’t confused later.
Have brief explanations for common questions that might come up
When I first met one of my friends, they were surprised that I was able to send and receive text messages, as they assumed that I couldn’t read them with low vision. Since this is a question that comes up somewhat frequently, I have a standard response about how I can enlarge text on my phone or have texts read out loud, so I can read and write text messages with no problem. I try to keep these explanations brief, maybe 10-15 seconds long.
Some other examples of questions that commonly come up when I meet new friends include:
- Why I wear tinted glasses/sunglasses
- How I walk around my school/college
- If/how I watch movies, TV shows, or online videos
- How I read music (if I’m in a music-related setting like band practice)
Since I run a public website on low vision and assistive technology, I’m happy to answer any additional questions that people might have about specific assistive technology, though some of my other friends will tell people to look up answers to their questions online. Both are valid responses.
- Texting and Low Vision
- How Tinted Glasses Help My Light Sensitivity
- High School Hallways and Low Vision
- Tips for Going To Movie Theaters With Low Vision
- My Large Print Music Binder
How I talk about my disability/conditions
I avoid using phrases that make disability or chronic illness sound miserable or tragic and reserve detailed explanations about my disability or other conditions for settings where they are important, like a doctor’s office or when working with vision professionals. When a new friend asks what disability I have, or how much I can see, a short explanation (less than 15 seconds) is enough in casual settings unless someone asks more detailed questions.
Some examples of explanations I have used include:
- I have low vision and have constant double/blurry vision, even with glasses
- I’ve had a form of strabismus since I was a kid
- I have trouble seeing more than a few feet away and use large print to read
- I have a fairly common brain condition called Chiari Malformation, which has an impact on how I move around
- I have vision loss that isn’t corrected by glasses and use a blindness cane to help me navigate unfamiliar or crowded places
Bringing up disability/conditions for safety reasons
People are more likely to ask me about more “visible” conditions in casual conversation since these are more noticeable and it’s likely that someone will have seen me walking around somewhere with my blindness cane before we started talking. I typically do not bring these things up on my own unless it is relevant to the conversation, however there are some instances where I need to proactively disclose a disability, chronic illness, or other condition for safety reasons- as in, if I don’t mention this, I could end up triggering a flare or having a medical emergency.
Some examples of situations where I will proactively disclose information include:
- Places/activities where my food allergies are a concern- I don’t accept anything without reading labels or asking lots of questions about how it is prepared, and when in doubt, I “go without” and don’t consume items.
- Venues that don’t have a place for me to sit down- this can mean asking for a seat since I have trouble standing for long periods of time.
- Places/activities where there is a large amount of strobe or flashing lights, which are a known medical trigger for me.
- Outdoor activities that involve very low or very high outdoor temperatures- another medical trigger, I’ll suggest another activity or location.
In these situations, I’ve disclosed information in the following ways:
- For food allergies, I will ask to read an ingredients label or talk to the person who prepared it. If I can’t safely consume something, I turn down the item and make a joke like “I’m much more interesting to talk to when I’m not having an allergic reaction!”
- With places that involve a lot of standing, I will ask if there is a place nearby we can sit down or if I can ask for a chair
- Before watching something, I’ll ask the person if they know if a video has a lot of strobe or flashing lights. If they’re not sure, I’ll ask them to send it to me so I can have someone else watch it for me first, or watch it later. Alternatively, I will use audio description (when available) to get warnings about flashing content
- For activities that involve very hot or cold environments, I will make sure to dress for the weather and take breaks indoors to avoid prolonged exposure when possible.
- How To Check Videos For Flashing Light Sensitivities
- Tips For Using Social Media With Photosensitivity
Requesting needed assistance
While I consider myself a fairly independent person, there are times where I need to ask new friends for help with doing something. I’ve discovered that giving specific instructions or ideas is best, as I don’t want to leave room for people to make assumptions. Some ways I’ve requested assistance include:
- “I have trouble walking through crowds, can I hold onto your arm?”
- “I’m having trouble reading this, can you zoom in/read it out loud?”
- “Can you grab some napkins?”
- “Do you know where the bathroom is?”
- How To Be An Effective Human Guide For People With Vision Loss
- Tips For Be My Eyes Volunteers From A Vision Impaired User
Turning down assistance
Conversely, there may be times where new friends might assume I am less independent or need help in situations where I actually don’t. While these situations can be frustrating, I try my best to respond with politeness and/or gentle correction. This can look like:
- “Thanks, but I can do that myself”
- “You don’t need to read that out loud, I can read the large text”
- “I don’t need a guide right now, but I’ll let you know if that changes”
- “I can grab that, be right back”
- “I can carry this if you grab the door on the way out”
- “Oh, I can use my (insert assistive technology here) for that”
- “I’ll go over there now, be right back.”
Changing the subject as needed
I don’t mind talking about my disability or chronic illness, but there are often much more interesting things to talk about when getting to know someone, so it helps to know a few different ways to change the subject. This can include:
- If someone had just asked me how I read, I’ll bring up a book I read recently or ask what they like to read
- When food allergies come up, I’ll mention things that I like to cook/bake and ask about other people’s favorite foods or what they think looks good on a menu
- Mentioning something about the activity/class we are in or talking about another shared interest
- Talking about something I’m excited about from the previous or upcoming week/weekend
- Sharing how an experience with my disability/chronic illness inspired me to make or do something cool- like my latest writing projects
Other tips for talking about disability with new friends
- Feel free to be the one to suggest or invite new friends to activities, as this can make it easier to get to know someone if you are in a comfortable environment/doing a familiar activity
- If the new friend also has a disability, listen to them share their own experiences and feel free to ask questions
- When I am getting to know someone, I might have trouble recognizing them if they approach me. I tell people that if they see me later, feel free to come say hi and identify themselves, i.e “hey Veronica, this is Jane from band!”