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6 Things Not to Say to a Person with Vision Loss

6 Things Not to Say to a Person with Vision Loss

It is hard enough to cope at times with having a vision impairment, and sometimes comments can really get to you. I know (most) people mean well, but when you get asked the same questions regularly which really have no good answer or are just plain silly, it starts to eat away at you. I try my best not to get frustrated but on a bad day, the last thing you want to be asked is something nonsensical. Here are the top 6 comments I’ve gotten over the past five years (and still get!).

“You don’t look blind”

What does “blind” even look like?! I hear this most days, and while I understand that people are trying to be polite and probably see it as a compliment, it’s just feeding into stereotypes. This is something that I continue to struggle with, the idea of what “blind” should look like and the stereotypes society places on people with a vision impairment. This occurs for any disability, cultural group, generation, anything – we are expected to fit into a preconceived model of what ‘it’ should look like. Who even decided what “blind” is suppose to look like?!

“Blind” doesn’t look like anything. “Blind” does not define the person, does not change their personality, does not change their appearance, their goals or their abilities. We are all unique, vision impairment or no vision impairment. We need to challenge stereotypes and try our hardest not to impose stereotypes on others. Be open to a person’s experience .

Image: This is me with Mr Cane. We go out together often. So this is what "blind" can look like.
Image: This is me with Mr Cane. We go out together often. So this is what “blind” can look like.

“If you are blind, why are you looking at me?”

This ties into the misconceptions and stereotypes about blindness. It is expected that if you can’t see well, you can’t locate people’s faces. I am lucky as I have spent the majority of my life with perfect vision. I learnt how to interact with the world as a sighted person. Stargardt’s affects my central vision which is what you use to recognise and view faces and detail. When I am ‘looking’ at a person, I can’t actually see their face. In my peripheral I can make out the trunk of the body and because I know that you generally can’t have a body without a head, I know the head must be on the top and direct my gaze in that direction. This is a lot of how I navigate and see the world. I know what is suppose to be where and I use my peripheral to make judgements on the shapes and movements to put a picture together. I must admit I do muddle things up, especially in new environments, and yesterday I got really excited while I was walking because I thought I saw a kitty in my peripheral but it was just a letterbox. I did try and bring the letterbox home..

So even though I may appear to be gazing fiercely into your eyes and reading your mind (actually I can do this) I can’t actually see you. Another technique I use to see is constantly scanning. I use my peripheral to scan a person’s features and try and gauge as much detail as I can. When I scan, I can usually notice the mouth moving or a raised eyebrow, at a close distance. To see a person’s eyes and facial features I need to be sitting quite close to them; sitting across from a person a a table I can make out the outline of a head and if I use my scanning technique I can see some facial expressions. When losing your sight, you also become more open to other senses and I can pick up on facial expressions through a person’s tone, body language I can see in my periphery and even from ‘feeling’ their energy. Of course to do this I need to be paying attention and engaged in the conversation so if you’re boring me I usually don’t notice very much!

“Can’t you just wear glasses?” 

Now I know this comes out of concern and a genuine want to help, but glasses are the most common visual aid and if you had been diagnosed with a vision condition the first thing would be to see if glasses helped. It is like stating the obvious. I get asked this so frequently I usually answer that I do wear glasses at times but they don’t actually help my condition.

For the record, I do wear glasses for distance. On top of my Stargardt’s I am also short sighted. I find that wearing glasses while I’m out and about or walking it makes the remainder of what I can see crisper. I still can’t read anything or see detail but the little improvement is enough for me to have exceptionally expensive sunglasses with prescription lenses!

“Have you tried laser?”

This is similar to above. I guess in sharing this I want people to know that there are some, many in fact, eye conditions that can’t be treated. There are many incurable degenerative conditions that not only affect older adults but affect kids and young people.

On diagnosis, even though you get told you have an incurable condition, you will spend hours on end Googling and researching possible treatments, each more bizarre than the one before. There are so many people who try and take advantage of the vulnerable and offer unproven, expensive treatments. In saying this, if something so simple and available could treat my condition, would I not have explored that option?  I do understand that people are usually not exposed to someone who is young and recently found out they are going blind. I just want people to know that conditions like mine do exist and are more prevalent than you would think and even though we can’t be treated  we can still function and live our lives well

“Is it contagious?”

Yes I have actually been asked this, and yes I had no idea what to say. I’m assuming this question stems from fear of being like me which is a whole different story in itself. Of course my situation is not ideal, but nothing in life ever is. And once you get past the initial shock and grief and start tacking the practicalities of being vision impaired, you realise that life can actually go on, and it goes on pretty damn well! I wouldn’t wish my situation on anybody but if someone happened to find their self in my shoes I would tell them that yes it is hard but it DOES get easier and life is definitely just as good as anybody else’s. We need to learn as a society not to fear the ‘different’ and to be open to people’s experiences.

Image: This is the face I pull when someone asks if my Stargardt's is contagious ;)
Image: This is the face I pull when someone asks if my Stargardt’s is contagious 😉 Another example of what “blind” looks like in my case – I have my glasses on this time.

“How many fingers am I holding up?”

After I get asked this the person will proceed to stick their hand and fingers in my face. This one infuriates me! I don’t need to be tested on my vision by anybody but my health professionals. Not only is this question degrading, I have an issue with people putting things in my face because of my vision. With central vision loss and the blind spot in the middle of the vision, objects are seen through the periphery. I pick up on objects because they come from the side (periphery) and then they disappear in my central vision. So usually I pick up on things coming sideways. If something is coming at me straight on, I can’t see it as it is in my blind spot, but it will get to a point where it is close enough to my face to see it (about 30-40cm away). When somebody holds their hand in my face, I don’t see it until it is really close and it appears out of nowhere which can be really startling. I also find that when people are really close to my face or waving things closely in front of my it is visually overwhelming and makes me distressed. It almost feels like I am being suffocated by a visual image that I am trying to process really quickly that came from nowhere. So if someone tells you they are vision impaired, there is no need to test it out.

I hope by sharing these experiences people will be more aware of what it is like living with a vision impairment. It has been a whirlwind few years for me and I feel that I can finally open up about some of the things people say that affect me.  It is that old saying “think before you speak” that is the key.

 

PS. You can follow my silliness on Instagram @chrissyrenee

One comment

  1. Jerry Cravens April 19, 2016 at 8:06 pm Reply

    Love it…proud parent with a son with Stargardts!

    Jerry

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