Visual impairment: An interview

[Storyteller.]

Visual impairment: An interview
By Christina (Kakorrhaphiophobia) and Robin (PSY)

This month, the Articles Team decided to do something different. Instead of presenting a typical article, we wanted to give the TeenHelp community a unique perspective on what it's like to be visually impaired. Christina has been serving as a Staff member for quite some time, and you may have noticed her work as the Disabilities Forum Moderator... but did you know that she can't actually "see" what she's doing on TeenHelp? Together, Christina and Robin came up with an interview format, where Robin created questions she felt would be commonly asked by people who have little to no knowledge of visual impairments, and Christina generously and bravely answered those questions based on her personal experiences and general knowledge of the subject. We hope this interview will increase your awareness of the various factors that come into play for a person who lives with a visual impairment.

So Christina, can you tell us a bit about your visual impairment? Were you born with it? What caused it? Are there any other symptoms or side effects to your condition, besides visual impairment? How much can you see, if anything?

Great questions! I was born visually impaired. My visual impairment was caused due to me being born prematurely and my eyes not having enough time to develop. My condition is known as Retinopathy of Prematurity (ROP); however, I never refer to it as this and express my condition as being born visually impaired. Most people do not care about the technical, scientific details, and in my opinion, they shouldn't. I am not able to see anything, but I've learned to deal with that as time has passed.

Many people have misconceptions about being visually impaired. Could you talk about some common myths you've had to disprove with your friends? What are some things people may not know about visual impairments that they should know?

There are many different myths out there, and people tend to be nervous about hanging out with or attempting to help someone that is visually impaired. People should know that there are very few things that I cannot do without sight. Just because someone cannot see does not mean they are unable to watch movies, play sports, have intimate relationships, and do many things that "sighted" people can. Yes, we may have to do certain things differently, but that is okay and not something that should bother people.

A common myth is that people who cannot see (or have extremely limited visual abilities) have extraordinary or above-average hearing abilities. I do not believe this is the case. Although I can hear rather well, this is not due to me having extraordinary skills. It is just because I rely on my hearing more than you may rely on yours. When someone uses only four of their senses, the other senses are able to do more due to the brain redirecting the energy and everything it would have used for the fifth sense to the other senses.

Another thing people should be aware of is that blind people can view things in the same way you do. There is no need to alter your wording for someone who is blind in order to make it more appropriate. For example, sometimes people will ask me, "Did you watch... I mean, listen to that new episode of 'Vampire Diaries'?" I usually just respond by saying, "Yes, I saw that episode," or, "No, I have not seen that episode."

What does a typical day look like for you? How much do you rely on your family to help you with every day tasks? What tools do you use to make every day tasks easier?

Wow! This is going to be a long answer! I currently am not living at home. I am a freshman in college and living in the dorms, so as of right now, reliance on my family is practically nonexistent. I rely on some friends I have met here at college for support at times, and I find them to be very helpful. I need help with small tasks, such as finding my way around a new place until I am used to it, or getting food in the cafeteria. Both students and college staff are very accommodating in these areas.

Now that I am at college, a typical day can vary quite a bit in terms of what I am doing when I am not in classes. I like that my time is more flexible, which does present some challenges, but they are not due to my visual impairment. My typical days are actually quite similar to days that a person with sight has: I wake up, get ready for classes, arrive at classes, take notes during lectures, take exams, and I manage to have fun throughout it all! I do not believe it is how my day works that makes my day different; I think it is how I complete tasks and how I manage things. For example, I do not use the exact same technology you may use throughout the day, and I have some additional tools that help me out.

One tool I use is a color identifier, which allows me to match my clothing before leaving for the day. When I take the device and place the front of it against a shirt or other article of clothing, and hit a button on the top, it tells me what color it is and whether the item is light or dark. I find this to be very useful; however, as tends to be the case with technology in general, it may be flawed from time to time.

The most important tool in my life is my cane. It is such a necessity to me that I rarely go anywhere without it, and if I do, I feel out-of-place and like I am missing something. I worry about what is around me and how to get around things that are near me. My cane saves me from many things and prevents me from getting into rather dangerous situations, some of which could include falling down stairs, off curbs, tripping over cords, stepping into potholes, and a variety of other situations. My cane is a great tool and essential for my everyday life, but it has a flaw: it can not tell me what is near the top part of my body, because it is constantly on the ground where it belongs.

You already talked about some tools you use every day, but a lot of people are probably wondering how you're able to use technology to your advantage. For example, how can you tell what's on your computer screen if you can't see it?

I have a laptop that is just like anyone else's laptop. The only difference is that I have a program called a "screen reader" installed on my laptop. This program takes the text you see and reads it out loud. I can do anything everyone else can with a computer, and there are tools within the program that I use that can make certain tasks easier, such as finding a heading on a webpage, or skipping over text in order to find input fields where I can enter text (ex. search boxes or input areas for typing replies to threads).

I also use a BrailleNote apex, a note taker that connects to the internet and can do some of what a laptop can do. It also has some advantages over a laptop, in that it can read Braille files and convert what I type in a Braille file into regular text, so that I can email assignments to professors or send messages to other people.

Technology can be obtained from Freedom Scientific, Humanware, and many other organizations. Before attempting to purchase any of these products (screen reader, magnifier, etc.), I strongly recommend that people seek assistance from their state agency or a national agency for the visually impaired/blind. These products are rather costly, and financial assistance is definitely available for those who have documented, medical proof of disability and reach out to agencies or who have family/friends that can connect them to agencies for support.

It seems like a visual impairment would make befriending people difficult. Was that the case for you? What kind of school did you go to? What opportunities do you have for meeting people in "real life" and elsewhere (for example, online)? What are some notable differences you deal with that a regular person might not deal with?

I attended both a public school and a residential school for the blind prior to enrolling in college. I really struggled with making friends in middle and high school because of my visual impairment. People would make plans with me at lunch or during study hall, and then they would never call me to confirm our meeting, or they wouldn't show up if our plans were already confirmed. As a result, I avoided people and didn't want to be a part of any friendships at all. I got used to people not inviting me to things (or inviting me and not following through), so much so that when people actually did follow through on the rare occasions I agreed to hang out, I was surprised.

Some things that really helped me and would help any person with a disability are joining clubs at school, volunteering in your community, and not taking your friends for granted. There are people out there who will be friends with you despite your disability. I have a friend from fifth grade, and although we don't hang out much due to our busy schedules, we still contact each other and hang out when we can.

What prejudices have you faced, if any? How have you managed to deal with those challenges (for example, coping mechanisms)? Have you experienced any mental illnesses, such as depression or anxiety, as a result of your visual impairment? If so, how did you cope with those challenges? How easy is it to find support when you have a visual impairment (for example, are regular schools/businesses/agencies generally equipped to meet your needs, or do you find many people don't understand much about visual impairments)?

I dealt with many issues due to people not being informed about visual impairment. People may consider what I went through "bullying," and I will not disagree with that; however, I have come to realize that people ignored me, excluded me from things, and generally treated me as less of a person because they were not taught how to interact with people with disabilities. This is rather unfortunate, and the fault is on society as a whole, not on one particular person or part of society. Parents and their children need to be educated about disabilities. I have walked through stores and other public places, and young children will say to their parents, “Mommy, why does she have that stick?” Sometimes, the child won't even get that far, and say, “Mommy, look, why…” before the parent says, “Ssssshhhh, don’t ask, that's rude.” I also see parents that are on the opposite end of the spectrum, who explain to their children what a cane is, how it helps, etc. I do not get offended when parents tell their children about people with disabilities, as this prepares them for encounters with children who are blind or have other disabilities.

There are definitely challenges with some agencies in regards to how they assist me; however, those challenges have been resolved through discussion and the agencies' willingness to adapt. They understand they are obligated to provide appropriate services to the clients/customers/students they are serving, regardless of whether or not they are disabled.

I have had struggles with depression, but this is not due to my disability. I believe my issues with depression stem from other challenges I have faced, and while being visually impaired has made me frustrated and upset at times, it has generally been something I do not view as a negative aspect of my life or a cause for sadness.

What advice would you offer to people who have visual impairments? What advice would you offer to people who have loved ones with visual impairments?

If someone is having emotional issues or difficulty coping with their visual impairment, I would suggest they reach out to a professional counselor to help them deal with this situation. This is particularly important for people who are gradually losing their sight and may have a fear of becoming completely blind.

Also, I have learned through programs I have attended for the visually impaired/blind that many people with visual impairment seek help from counselors and other professionals regardless of how long they have been blind. Getting help is not something to be ashamed of, and it is a great feeling to get an outside opinion during times when you may feel no one in your life wants to (or is attempting to) understand what you go through. I have found that being visually impaired can lead to isolation and incredibly difficult issues with feeling lonely, due to how others may treat you and an inability to relate to others. If it is available, going to a support group for people with disabilities can be a very rewarding experience. I did not have this opportunity where I live; however, I was able to go to groups at summer programs that are designed for visually impaired people. They were rather helpful, and I learned a lot.

If you know someone who has a visual impairment and are wondering how to help them (or if you are losing your sight), one of the first things you can do is begin to realize that you are not alone. The person losing sight does not have to go through this change alone, and neither do the people in their life that want to be there for them.

A really great resource is a set of podcasts from the Braille Institute that highlight some challenges and ways to overcome them. The podcasts can be found online and through the Apple App Store and Google Play called “iBlink Radio”. Also, getting in contact with organizations that help the blind learn to live independently and teach them skills they can use in everyday life is critical