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Soup is my nemesis

Wed, 11/20/2019 - 14:46 -- geeta.nair

Whilst working at The Wellcome Trust as Director of People and Places, I had the privilege of working with Aidan Kiely, who had been born blind. Towards the end of our time together I had a long chat with him about his life and what sighted people could learn from him, some of which made me think and act quite differently.

We will come back to the soup later!

Aidan was born completely blind, with no perception of dark, light or colour, due to a recessive genetic condition – a condition that is only present if a faulty copy of a gene is inherited from both parents. This meant that his blindness was a complete surprise to his family, and has been a learning curve ever since. Aidan is mature beyond his years and very much at ease with his blindness, summing it up with the words “I’m really pleased that my sister was born sighted but okay that this happened to me, because for me it has opened as many doors as it has closed, and I really do feel strongly about that.”

Aidan’s different ways of doing things were simply the norm within his family and at first he attended a specialist primary school, so it wasn’t until he went to secondary school that he started to be confronted by the conscious realisation that these differences mattered and impacted on how other people perceived and interacted with him. As he puts it "it was the start of learning how to be something out of the ordinary and to help others to be comfortable with that'.

It clearly didn’t get in his way, as his intellect and desire to learn took him through school and up to Cambridge where he completed his MA, before taking an MSc at Manchester. Aidan worked in the NHS and wider health care sector in various project and management roles before joining me at Wellcome, where he played a key role in continuous improvement alongside opening the eyes of the Diversity and Inclusion team.

Aidan is one of those few people in life who constantly inspires me, his positive attitude to life is amazing, and he has given a lot of his time to supporting and mentoring others. So, just what is it like being blind? Can we sighted folk get an insight? Probably impossible. But let’s give it a go…….

One of my early hang-ups was using phrases such as “what is your vision for the project” or “can you see where this is going” in front of Aidan. They are common-place and it’s so easy to use them without thinking. Aidan realised that I was stumbling over these words and started to deliberately use them in his own vocabulary to help put me at ease. As he explains “to watch a movie is not just about looking at the screen, it’s also about the atmosphere that the Director creates, the dialogue between the actors, the events that occur and the emotions evoked, hence to watch a movie is actually to experience a movie”.

Aidan encourages people to chat to him as normally as they can and disregard their fears over words like see, look and vision. “Our language is full of metaphors which would sound silly if taken literally, whether it be asking a blind person about watching a film or inviting a wheelchair user to ‘take a stand'". It took me a while to get over my initial inhibitions, but it was well worth it.

When sighted people reference things like a large building or aeroplane (objects that are too large Aidan to touch), he explains that he has "the ability to conceive intellectually sighted concepts. If it’s as large as a plane, someone is clearly trying to indicate that the object they describe is considerable in size. I know that if it’s as large as a car, or as a football, we’re again talking about different degrees of size being emphasised. That’s something you just learn.”

Shapes were learned at primary school, through tactile objects, and these help him to complete the 3D jigsaw puzzle in his mind. “I know, say, what a square is because as an infant we were given raised diagrams or plastic models of squares, triangles, circles etc. We even had toy clocks where you could move the hands. As people described objects as we felt them, I could learn concepts such as wide and narrow. I know what a narrow space is because people would say that we were walking through a narrow space, and so I have no trouble conceiving of these notions that people think would be hard to grasp without sight.”

For Aidan, the concept of colour is gained through learned understanding. He tells me that different colours evoke different responses, feelings and experiences in people and he has learned to feel these for himself. Red for excitement or anger, for example, the calming nature of blue and the environmental credentials of green. By learning the differences that sighted people express about colours he can then get a feel for them and play a full part in conversations, something that he has always worked on. “Of course I want to have an opinion on what colour my room should be painted. Of course I want to make informed choices about the clothes I wear and the impression I create. Of course I want to understand how those who perceive colours experience different emotions and get a sense of the atmosphere of their surroundings. That’s part of living in a sighted world.”

Where Aidan has a distinct advantage over others is in an interview. He has no clue about the colour of an interviewees skin, their choice of clothes, their hair colour, tattoos or piercings and so instead he concentrates on what they say. “Things will come to light, perhaps because others later tell me or in the course of conversation, but those details are absent to me at the start so I don’t think that they have anything like the powerful effect that they do on others in forming that all-important first impression.”

He’s had some funny moments where he admits that he has been surprised to find that his guesses about a person have been completely off. “A person’s ethnicity, for example, might not come up in conversation for months. Then I might find out someone has a completely different ethnic background, or is quite a bit older or younger than I’d guessed. Things like name, accent and voice aren’t always that reliable.”

I asked Aidan about his favourite spaces (a term he uses to describe the places that he visits). His first was his house, a place that is completely familiar to him, where he knows where things are, where he can relax and chat at ease with his family and live his life without any pressures. His second was a surprise for me, it was an open field or the countryside, places that he needs to be guided, but where he can feel the wind, hear the trees and the birds, where he can find peace and calm and appreciate nature.

Aidan enjoys sharing the funnier side of living with his disability. Funny moments include answering someone in the street who he thought was asking how he was, to discover that they were not talking to him, but to their mobile phone. On one occasion he realised too late that he had unknowingly asked a very small child on a train if he knew which station they had just passed (the child ended up getting help from their mother and grandmother, so it became a great opportunity to meet a new family!). Aidan enjoys recalling these stories because he says that they make people laugh, and humour helps people to open up.

His favourite work anecdote remains the time heentered the lucky dip Secret Santa at his new workplace, only to unwrap a reading light and picture book to the dismay of the entire table. “Of course I pretended to look really displeased for a while to make it a bit funnier.”

Discrimination, as Aidan says, is a very broad term with different meanings to different people. Thankfully direct discrimination is a very rare event for him. Instead, he sees much unintended discrimination in the way things are set up or the misunderstandings people have. He can’t, for example, vote in secret: someone has to complete the ballot form for him. Tricky given his awful record of voting in previous elections!

After some poor experiences, the choice of companies that he works with is now predicated on how helpful they are at discussing his needs and talking about accommodations that can be made before he starts. “I’m not automatically impressed by big names. I think about whether they’re going to have an open mind and be willing to work with me to make it work and get the most out of me, and when it does work, I have a strong desire to stay and sense of loyalty to that place.”

Those accommodations are actually quite simple: screen-reading software to enable use of a laptop; remembering to give Aidan advance copies of meeting slides etc., so he can listen to them before attending; a fixed (not hot) desk that he can get to know; time with a colleague to learn routes to places in the building (toilets, canteen, tea station, reception, lifts etc); a fire evacuation plan; and an alert to the facilities team not to create new trip hazards without first alerting Aidan.

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