As human beings, we all have a set of assumptions or pre-conceived ideas about people, society or life in general. We’re human after all! However, there are times when these are harmful or misrepresent a person or a group of people.
Having a visual impairment or having some form of sightloss is becoming increasingly common. Sure, people wear glasses now as a fashion statement and not as a method of visual correction. Often times when I speak about my VI with someone new, they respond with “oh yeah sure I’m the same, I have to wear glasses while watching tv/reading/driving”. And while sight loss is a spectrum, there is a difference between having a disability, and requiring glasses for certain activities or to restore your 20/20 vision. People are often surprised that even with my glasses, I still don’t have full vision, and can’t drive or see detail and things in the distance.
So todays blog post is a bit more personal, and centres around the misconceptions that I have come up against from time to time (not all the time), due to having a albinism and a visual impairment. I think it is important to caveat that this is my experience and isn’t representative of all people with albinism or a VI. It is also really important to say that the vast majority of the time, other people are sound folk who are kind and understanding. So here are the top 3 misconceptions I have experienced on my 30 years on this planet.
1. I’m rude or unfriendly
This is the one I am most conscious about! Before we left Ireland, I would have encountered this in work for the most part. I worked for a big organisation in an operations management role so I would have spent a lot of time walking around the operation, making sure it ran smoothly.
This meant that I would walk past many other staff members, some I knew, others I didn’t. More often than not, I would walk past someone and not say hello, or even acknowledge them because I couldn’t see their faces or recognise who it was. Or even worse, someone would wave to me and I would completely ignore them! This is not the message I want to send to my colleagues!
This might seem small but a large part of my work was fostering and managing good working relationships, and a chunk of that comes out of those chance happenings or meetings in the corridors. These random meetings or bumping into each other can be a good way to follow up on an email, have a check in about a project or just a quick chat about nothing work related. Often times I miss these, and this can come across as rudeness or unfriendliness.
This has carried over into our vanlife trip as I often don’t acknowledge or interact with our fellow campers, because I can’t see if they are there, or if they are looking my way. This makes saying hello a bit difficult as I could be saying hello to no one!
So I suppose I am trying to say, I’m not ignoring you – I just can’t see you!
2. I miss social (and other) cues
I couldn’t find a better way to word this heading so its not in keeping with the tone and style of the article – sorry! I find this one to be the most irritating thing about having a VI (and the most embarrassing!). I walk into things like hanging tree branches or Perspex screens, I can’t see when someone is waving at me from their car to cue me to cross the road and it takes me a moment or two longer to understand what may be going on or what is required of me (like where to queue, following directions or reading a sign).
Most of the time, people give you time, a second chance or the space you need. However, I have encountered impatience, frustration, ignorance and unhelpfulness as I navigate the world. Most recently I had a fellow cyclist (who was cycling way to close anyway) get very frustrated and audibly annoyed as I slowed down to make sure I was going the right way.
The built environment is a real barrier here, with terrible signs, cluttered pavements, very poor steps and broken pedestrian crossings. Sometimes I feel like I need to wear a big sandwich board that says “I HAVE A VISUAL IMPAIRMENT, SOME THINGS ARE MORE DIFFICULT FOR ME. PLEASE GIVE ME SOME EXTRA TIME AND SPACE” to compensate for the poor environments I find myself in. This might be a bit impractical though. I also love clothes and this would just cover them up.
3. Due to my albinism, I should look or act a certain way
Most of the time, people have never met someone with albinism, or their only experience of albinism is through animals like snakes or rabbits (or Ghost in Game of Thrones). This leads to a very narrow definition and set of expectations or assumptions that people have about what I should or should not look like. The list below is some of the comments or questions that have been made to my face, and behind my back;
- Why don’t you have red eyes?
- Do you avoid the sun all the time?
- Wow your skin is so pale!
- Is that your natural hair colour?
- Is ALL of your hair that colour?
- Why don’t you wear sunglasses all the time?
- Can she hear?
- She is as white as snow!
Thankfully, this is not a regular occurrence and most of the time people are genuinely interested or complimentary. Other times, comments are born from misinformation, innocent misunderstanding or downright rudeness. I once had a man scream in my face “She’s an albino” as I was walking into a train station. Thankfully that has only happened once!
Albinism actually has three main forms – Type 1 Tyrosinase negative Oculocutaneous Albinism, Type 2 Oculocutaneous Albinism and Ocular Albinism. You can read more about these here in my other blog post – He Has White Hair! Happy International Albinism Awareness Day!. Like most things in life, each individuals experience and outward presentation of albinism is different, and no two people are the same.
There are some similar characteristics like hair and skin pigmentation, sight loss or sensitivity to light, but the intricacies of these vary from person to person. As do the methods they use to deal with their condition.
3 Tips for Overcoming these Misconceptions
This section is intended to be supportive and helpful rather than preachy! I have been asked a couple of times for some tips on how to avoid or overcome these misconceptions or how best to support someone with a visual impairment so here are my top 3!
- Don’t make assumptions. There can be many reasons why someone does or does not do certain things. If I ignore you, it is because I haven’t seen you, not because I am being rude or I don’t want to chat (I love a chinwag!).
- The most helpful thing for me in this situation is for the other person to say “Hi Aoife, its (insert name here)”, or walk up to me and say hello. I can’t see if you wave at me so this does not help!
- Consider the situation from the other persons perspective. Chances are they are doing something differently as a compensatory action because the environment or their disability demands that of them
- Give me a bit of time to figure out what is going on. Even one extra minute can really help with getting orientated, comfortable or to see what is around me.
- Ask someone what would be helpful, or what they need. I love it when this happens, because you know the person you are dealing with is aware, empathetic and isn’t making assumptions on what you need. It also allows me to describe exactly what I need and how it can best serve me.
- This is particularly important when something is being built or adapted – like a public space. People who have sightloss, are the best people to ask when it comes to making something accessible for them.
No one human being is perfect, so it cannot be expected of you to have perfect, flaw free interactions with someone who has sight loss. The most important bit is that you try, are open minded and have patience. These qualities go a long way to making our society as inclusive as it can be.
If you are looking for further advice on how to make a space, website or environment as blind and VI friendly as possible, check out the National Council for the Blind of Ireland (NCBI). They have a wealth of knowledge and are always open to supporting and advising on making the world a more accessible place.
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