How I see it …. a matter of perspective

I thought that I would continue along the theme of assumptions we make and judgements associated with these along with a narrative about resilience being a rollercoaster ride.

This reflection stemmed from an interaction with a healthcare professional today. I saw her with mild but relentless eye pain. She asked me how things were going and how my last specialist appointments went and about my MRI results. I relayed, the results, discussions and a plan of having eye surgery on the next available theatre slot for this (January) in an attempt to preserve my remaining vision. I proceeded to explain the surgery, risks, benefits and success rates related to my conditions as well as what I was putting in place to promote the best possible outcome based on the research I had read. For this, I got the label “science geek”. At the time this seemed like an excellent complement, but in hindsight, my response was rather superficial and detached.

When I got home, I recalled my blog post last week, where a member of the public told me I was “amazing” for managing to walk around a rubbish bin that was on the footpath. At the time, I was a little taken aback and quickly pushed this aside as something simple and applied own assumptions of what I considered amazing, such as getting my PhD, being published, loving my job and passing on my knowledge. 

This not only prompted me to analyse an earlier conversation with a healthcare professional but also made me rethink my reaction to the difference in perspective about success. 

The earlier conversation covered planning my needs post-surgery as I will not be able to see much (which will prolong the uncertainty around the success for some weeks after). In this conversation, I was asked what I needed help with. On face value, this question seems simple, however, even as an experienced nurse, I found that I wasn’t really sure what I would need. I could guess and as a result, kept unconsciously relating things back to how I see now and not what it will be like post the surgery. This included thoughts of I can do that, I don’t need help with that or someone might need assistance more, or there is always someone worse off, which are my go-to responses.

It wasn’t until she used more concrete terms and bluntly pointed out that she thought that I needed “urgent” referrals for daily tasks that I began to realise this wasn’t going to be as easy as I thought. Changing my mindset started with being asked the following two questions: 

  • Do you think you could make toast safely when you can’t see the toaster?
  • Have you ever made a cup of tea without any sight?

To both of these questions, I paused and then replied – “I don’t know”. It was not until this moment that I began to realised practice, tips, tricks and techniques were required before the need for them. As a nurse, it is logical to forward plan and assist others to prepare for their recovery as much as possible. However, applying this to myself as a patient who had not previously experienced total blindness was not as easy as I initially thought.

She then asked about how I would get to followup appointments and even after the above realisation my automatic problem-solving response was, I will get a taxi. Then she asked me if I had thought about how I would get into the building from the taxi on my own with no vision? To which my automatic response was that I already use a long cane and will be OK, but the truth was that I had not thought about it until that moment. What had not sunk in was that I use the cane with some vision, not with no vision, and these were two different experiences requiring different approaches.

Perspective

At this point, I noticed my thinking was as a nurse, not a patient. My mind was speeding through multiple potential problems and analysing these to find the best solution. As someone who is usually independent and confident in what I do, this conversation and analysis made small tasks such as making toast uncertain and seem impossible.

In fact, a more robust approach would have been, turn off “nurse mode” and slow down, start asking questions to gain a better understanding of what to expect and then formulate a plan. 

Yes, Shayne – if you ever read this – we discussed this just today in another context.

Writing this has shown me that we all make different assumptions and what we do with these is the important part. Perhaps I will now need to start changing my focus so that the smaller tasks such as making toast and navigating a rubbish bin on the footpath are seen as a success.

How I see it … what we do with our assumptions

I was reminded several times in the last week, just how our assumptions can influence and impact others. There are two examples of this I would like to discuss. The first was challenging my own beliefs when I went to a Christmas Concert featuring the Auckland Symphony Orchestra among other performers. The second was the assumptions of others.

At a Christmas Concert on the weekend, I found myself wearing sunglasses when I usually would not have needed to. It made me recall some assumptions I made as a child of around 13 years old. I typically associated a blind person as someone who could not see anything, wore boxy blacked-out glasses indoors, at night as well as outdoors and needed to tap around a white cane and had to have help with “everything”. Over the years, I had learned that this assumption was not the norm, however, at times, thoughts creep back in, and I need to remind myself that my assumptions are not necessarily generalisable. This experience caused me to reflect on why I was wearing sunglasses when I was wearing them and how much these helped me.

Two of my multiple pairs of sunglasses.

What isn’t apparent in my story so far is that I was wearing my sunglasses at night when it was dark. There was a method to my madness in this instance, as the glare from the oncoming traffic, street lights and concert lighting coupled with a crowd of 3000 – 5000 people was a little overwhelming, and the sunglasses made visual stimuli and using my vision manageable.

My realisation was that I was “just like” the assumption my 13-year-old self made, which was slightly confronting and made me consider how I wanted to be perceived. Which is a confident, independent and well rounded person who just gets on with what she needs to do without brining attention to herself.

This led me to reflect on how I wanted to be perceived and why I was so afraid of being recognised as a blind (or low vision) – or in a nutshell as different. I came to the conculsion that this was because of societal perception of blindness as a deficit (as an aside, I am an academic who is struggling not to link this blog post with a theorist, model or research but continue it as an informative story of life). In true academic fashion, this led to more questions than answers, so I decided to present the beginning of my list:

  • Is low vision actually a bad thing?
  • Why is it often depcted in that manner?
  • Why do I often believe it is “bad”?
  • How much has society had to do with this assumption?
  • How and why did society come to those conclusions?
  • Why do I revert to believeing these societal norms?

I didn’t want to be known as the person with “low vision” or the person who “can’t see” because this mindset is one of a deficit, where society seems to hold different standards.

For now, I will park the theoretical component of these questions and explain how these concepts relate to my experiences. Over the last six months, in particular, I have noticed my visual field getting smaller and have not been seeing some things around me. Interestingly, I feel I have been conditioned not to let those around me know or help when I am finding things difficult and get on with things myself. For example, in a crowded meeting today people got up and moved towards the door leaving a wake of scattered chairs which i promptly fell over. My response was to get up and continue with my day and fly under the radar.

A prime example of lower standards occurred when I was walking to work on Friday (rubbish collection day). There are usually multiple wheelie bins on the footpath. While these make annoying obstacles (and I need my sunglasses to even see them) they are a necessity of life in the community. As a response, I tend to use my cane more to determine how far away they are. During my walk I was passed by a woman and smiled, saying good morning and kept on walking. About 20 metres down the road, she stopped me and said with conviction: “I think you are amazing” going on to say “I watched you get round those rubbish bins … you are just amazing”. I didn’t know how to respond and opted to say thank you and kept walking.

This person had made a few assumptions in her statements, and I was left feeling that I was being judged for my low vision (I do acknowledge my assumption here). I thought about this for the rest of my walk to work, and it cemented how much that assumptions that are prevalent in society can influence your own self-perception and in-turn self-esteem. I would like to think that I am amazing for what I contribute to the community rather than navigating around a rubbish bin. While I measure myself against my contributions to society as a person, academic, nurse, volunteering, project work and as a leader in my own right, it would appear based on assumptions others may have much lower standards.

Tattoo with binary code that says "I am enough"

This comes full circle to how I respond to these assumptions, in other words, what I can control and what I can not. I have concluded that all I can control is how I choose to perceive myself and decide to promote myself to the world. I would like to be honest and acknowledge that my response to this is that self-perception and esteem is impacted societal assumptions, and I often set myself very high expectations to counterbalance the deficit model described above.

To remind me of the influence of society, I recently got a tattoo where I can carry a message to myself as a constant reminder. I will let the readers decode the tattoo, be aware that I have left the first four digits off of each row.

How I see it … getting around in the UK and Hamburg

For those of you who are new to my blog, I am a nurse and academic who happens to have a vision impairment. In the last year or so my night vision has decreased and susceptibility to glare has increased. To learn more about my vision, please see my previous blog entries. I have recently started using a white cane to get around mainly when it is dark, or the glare is excessive.

This blog post primarily focuses on moving around London using public transport to get to the conferences that I have been attending along with visiting friends and family. There is a lot to cover, so I have concentrated on spatial awareness, travelling on the London tube, the pedestrian environment and crossing signals.

So far I have participated in an education conference in Bloomsbury, London for three days, visited friends in Hamburg and Oldenburg in Germany and am currently staying with family in the south of England until returning to London for a Digital Health conference next week.

Spatial awareness …

One thing that has stood out while moving around in the UK and Germany is that people appear to be more spatially aware than those in Auckland. What I mean by this statement is that so far fewer people seen to walk around staring at their cellphone or feet and more people seem to notice what is happening around them. While this is a generalisation, and there are always exceptions to the rule, I feel safer moving around in crowded areas because more people notice what is around them.

One of the challenges I have is in crowded areas where people moving around me affect my ability to judge distance, and any movement distorts my vision; this means that I tend to limit moving around and feel nauseous when others move.

The other surprise was the number of push bikes in Oldenburg; however, these travel on the road or bike lane on the footpath and both pedestrians and riders show far more respect for others sharing the space than I have encountered in Auckland. The part of navigating around Germany that was the most challenging was re-learning traffic patterns and remembering traffic approaches from the opposite side of the road. A tip for vision impaired travellers is that there are no buttons on to press at the crossing, but you need to cover the whole front of the box with your hand, and it detects this. Hidden on the bottom is a plastic indentation which moves when the light is green.

On reflection moving around as a pedestrian in both London and Germany has been less stressful than I expected. I suspect this was directly related to the spatial awareness displayed by others and the distinct lack of electric scooters on footpaths. While I have been known to ride an electric, I did not realise how much stress sharing a path with unpredictable and fast electric scooter riders in Auckland had caused me until I was in a place where they did not exist.

Travelling on the London Tube …

Navigating the tube has been an “interesting experience” the most significant difference from Auckland is the sheer volume of people who try to fit onto the one train is somewhat overwhelming. Often I have found that I am standing holding on to a rail with people crushed against me on all sides. As someone from a country where there is less crowding on public transport, I found this quite confronting. In comparison, the trains in Hamburg were very well scheduled and timed, and this meant that I always got out of one train carriage, walked about ten paces across the platform and got straight on to the other train which meant that both platforms and trains seemed less crowded.

However, in saying this, in the UK, even though the transport system is crowded, many staff members are there to assist in navigating the system and are very quick to offer assistance. For example, at Victoria station, I stood for around 30 seconds looking at a sign before I was approached by station staff asking if they could assist, he then offered to walk me to the platform I needed.

Similarly, each time that I have entered a tube station with my white cane, a staff member has approached and asked if they can help – which is fantastic. So far the assistance I have accepted has been in the form of asking the way to a particular platform and I have been given very clear directions and if I have declined further assistance staff have accepted this without question. What has stood out is that the workers in London and on the Southern UK train network never seem to make assumptions about the assistance that I need but asked if and how that they can help.

In contrast, interacting with members of the public travelling has been variable. I have had some very positive interactions and some very poor interactions. For example, in a packed tube train where I was standing surrounded by people and unable to move in any direction, the tube stopped at a station, and several people got off of the train. A woman grabbed both of my arms and pushed me into a seat saying “sit down”. A seat is excellent, but, I was somewhat overwhelmed by someone deciding that they could by physically moving me without asking is not pleasant and is also making assumptions about my needs. This treatment put me in a vulnerable position, where I felt very uncomfortable.

The Pedestrian Environment …

After travelling in New Zealand, Sydney, Brisbane and Melbourne, I was surprised that the distance between the platform and train was so variable in both height and length. Similarly, the curbs and stairs are also variable. While many people could argue that this is a part of history and charm of London, this has meant is that I have had to rely on my white cane to determine distance far more than I would at home. An advantage of this is ensuring safe travel, but as a part-time cane user, it has been an emotional step for me to increase the cane use.

wlo-bl-nbplat

Photo from: https://www.squarewheels.org.uk/rly/LUgenPhots/WLO-BL-NBplat.jpg

Some tips that may assist vision impaired travellers:

UK General:

  • Accessibility is well legislated, conferences etc. offer large print and accessible materials as a standard.
  • Audio described performances at the theatre are common and often no extra charge.
  • Attractions will often offer different and more extensive tours to those with a disability.

UK Transport and Travel:

  • Obvious one traffic drives on the left.
  • Expect more crowds.
  • Traffic signals have tactical markers under the box in the form of a cone that spins when it is safe to cross.
  • Train platforms aver variable in distance and height to and from the train.
  • Stairs in the underground are variable in markings (can be absent), shape, size and surface.  They can also be odd shaped such as curved with unexpected pedestrian tunnels crossing in older parts of the network.  London Transport offer guidance on how to avoid stairs they also offer accessible journey planning advice including planning trips without stairs.
  • Some platforms are curved and not straight.
  • Cobblestones are problematic, consider a rollerball tip for your long cane.  If you did not bring one you can order one online or buy one onsite at the RNIB in London.
  • Tube Maps are tiny to read.  You can download a PDF or order Large Print and other formats.  An audio guide to the london underground is also available.
  • You can order a badge saying “please offer me a seat” although I did not do this and can not comment on the usefulness.
  • Concessions may be available.

Germany (Hamburg and Oldenburg):

  • Obvious one is that traffic drives is on the right.
  • No buttons on the crossing boxes, apparently you cover your the front of the box with your hand to activate the crossing if this is required (some crossings are automatic) and tactile feedback is an indentation on the underside of the box.  
  • Cobblestones are problematic, consider a rollerball tip for your long cane.  If you did not bring one you can order one online or buy one onsite at the RNIB in London.
  • People seem less likely to offer assistance with less staff at stations in Hamburg.