Kathryn’s Story

Travelling by bus with sight and hearing loss

“It just adds a layer of security knowing you have a considerate driver”
Image of the priority seating sign on a Lothian bus

Kathryn uses Lothian’s services frequently in her daily life. Whether going to and from work, shopping, or to go for a haircut, she relies on Lothian to provide safe passage for her in Edinburgh.

She is not a big fan of bus travel, however. This is mainly down to the challenges she encounters each and every time she uses the bus due to a very rare complex genetic disorder she suffers from.

Kathryn was born with Alström Syndrome. First discovered in 1959 it’s an incredibly rare disorder that not many people have heard of (in fact, only two families in the whole of Scotland are known to have it). Alström Syndrome is associated with a wide variety of symptoms affecting multiple organ systems of the body.

As a result, Kathryn suffers from photophobia (an increased sensitivity to light) which has left her blind in both eyes, in addition to hearing loss. She was born with near normal sight which has deteriorated over time, and is now unable to see at all.

Due to its extremely complex nature, Kathryn has many other health concerns – all of which are hidden disabilities. To the average customer on a bus, only her guide dog would give any indication that she has a disability.

She encounters many difficulties when boarding buses, and one of the most difficult is her inability to hear clearly, which in Scotland – with high winds often a regular feature of our day – exacerbates the issue.

“The winds along with the bus engine can make it extremely difficult to communicate,” Kathryn says. “Sometimes drivers are shouting across to me while I’m waiting at the bus stop and if I can’t hear them, I might miss the bus or even get on the wrong one.”

During the pandemic, Kathryn continued to use our buses and cites more difficulties the pandemic has created in terms of communication.

“It may not seem like much, but the Perspex screen on the driver’s cabin makes a big difference. It’s just another barrier sound has to travel through and it can lead to me getting confused by the muffled sounds.

“It’s the same with face masks,” she adds. “If I ask someone at the bus stop what the next bus number is, I don’t always hear their responses clearly. I also wear dark glasses, and this could be confusing to bus drivers as they can’t use eye contact with me.”

For Kathryn, some journeys take five minutes, and others take more than an hour. Neither are easy for someone with no sight and hearing difficulties, but for the latter it can cause real problems when things go wrong.

“This doesn’t happen all the time, but sometimes drivers forget to remind you where you are,” she says. If this happens and you don’t know the area of the city very well, it’s very difficult for you to regain your bearings and get back on the right track.”

Kathryn also experienced a minor fall on a bus once, when the bus pulled away from the stop before she had taken her seat. It wasn’t serious though, and she now asks drivers if they can wait on her taking her seat before moving off.*

Kathryn has enjoyed some positive experiences on our services, though.

“Some drivers are great and extremely helpful. Sometimes you get a driver who is very considerate and takes the time to ask you where you’re going and if I need help getting to my seat,” she says. “It just adds a layer of security knowing you have a considerate driver.”

Kathryn has had mixed experiences with fellow customers on the bus. Many offer to help her on her way and are quick to remind her she’s at her destination. When going somewhere new, Kathryn relies on others advising her where she’s going, and often asks for directions.

“I have had some great experiences with customers,” Kathryn says. “Most people are so helpful but sometimes people ignore me. Also annoying is when they tell me we’re at my stop and we’re not. That’s mostly an innocent mistake but it does annoy me when I’m having to listen out for the driver and someone else tries to help.”

She has often had to settle for a seat that is not a priority one, which is difficult for her as she is used to sitting in these seats. Priority seating isn’t crucial to her, but if she has her guide dog with her, the dog may end up in the middle of the aisle and can be problematic.

With degrees in History and Sociology, as well as a Master’s in Applied Sciences (all from the University of Stirling), Kathryn is hoping to start a new job soon, which will require even more bus travel, including connecting journeys.

For the average customer, some measure of preparation would be required for making these journeys, but for Kathryn it involves a massive amount of planning the night before. She relies on the Lothian app to let her know bus times and routes to give her as much information as possible ahead of time.

“By chatting to me it shows Lothian have a commitment to accessibility and that is a good thing.”

Despite some of the issues she’s encountered, Kathryn believes that awareness of hidden disabilities is getting better in society, and that Lothian are particularly helpful when it comes to messaging around accessibility.

“I can’t think of lots of things Lothian could to do improve, they do a good job,” says Kathryn. “Maybe continue working with other groups, trying to further understand the challenges people have on their daily travels.”

Our thanks go to Kathryn for speaking about her experiences with us.

Lothian remains committed to providing an efficient, world class bus service for the people of Edinburgh and the Lothians. Within that commitment, we reiterate that our buses are accessible for everyone. We would like to remind customers that not all disabilities are visible, and for a variety of reasons some of our customers cannot wear a face mask during their essential journey. Please be kind and considerate while on our buses.

* Thistle Assistance is an initiative to help you feel safer and more comfortable when using public transport. You may prefer more time to get to your seat. You may like your driver to speak more slowly and clearly. Thistle Assistance’s card and app let transport staff know in an easy and subtle way what extra support you’d like. Visit the Thistle Assistance website to find out more.