Shamreen

Shamreen is is a bright, bubbly, warm woman living just outside of London with her husband and two young boys. When you first meet her you could be forgiven for thinking she was like anyone else but Shamreen has been living with Cone Dystrophy her whole life. 

Cone Dystrophy is a condition that means the cornea of the eye doesn’t function as it should. In a healthy eye, the cornea controls the amount of light let in, Shamreen’s cornea does not. This results in blindness but the opposite of what a lot of people would assume blindness to be - Shamreen’s eye lets too much light in, creating a ‘bleached out’ effect. Shamreen described it being like when you move from a very dark space into bright sunshine - everything bleaches out for a few seconds whilst your eye adjusts. In Shamreen’s case, it never does. Our sight is something most of us take for granted. Like all senses we rely on them but don’t really think about them a lot of the time. Everyday tasks, such as cooking or getting dressed, that for us are straightforward and mundane become huge challenges for Shamreen. 

Shamreen’s poor sight however was only half the story. Although it was not obvious at first, the more time I spent with Shamreen I began to realise the extent to which those around her did not know how difficult she found it to see. Her family had worked hard to play down her disability. She described incidences that her mother and brother in law had come to her house and cooked a meal for guests that Shamreen had then taken out, to make it seem as though she had cooked it herself. Sadly, it would seem that she had been encouraged to hide her sight problems since childhood. Even her husband did not fully appreciate her condition. Whereas most people with sight loss in the UK are given tools to empower them, Shamreen was cut off from them.

You didn’t need to spend a long time with Shamreen to know her two sons were her highest priority. In amongst her emotional struggle was a huge fear that she was a bad mother, something I repeatedly assured her was untrue. As we explored together what design could do to give the greatest impact, it was clear that the motivation had to be for her to do something for them. Her condition has keeps her indoors most of the time. Going outside causes Shamreen huge anxiety on her own, without anyone with her, she can’t do it, especially when she has two very energetic young boys to keep tabs of.

The team and I identified that we wanting to give her the confidence to move around outside with her boys. Shamreen talked about certain routes such as the walk from her house to the local swimming pool. I was very aware throughout my time with Shamreen that she was going through a process herself. Slowly I would introduce tools to her that she’d not heard of before such as cooking aids for the blind. When I asked her if she had ever considered using a white cane, as this tool proved very effective for so many others, both acting as a way to gauge what object were in the surrounding area but also and equally as crucial - acted as signal to other people that this person cannot see and therefore they should act accordingly. But Shamreen was too early in her process. She saw this as ‘giving’ up.

So our tool was to be an aid but not the whole solution. We created an app that we called ‘Breadcrumbs’. Breadcrumbs uses GPS to lay tags along a known route that Shamreen lays herself, with a sighted person, to warn her of hazards (low walls, uneven pavement), remind her of mobility techniques (cross at a particular crossing, use parts of buildings as ‘sure lines’) or nudge her with wayfinding pointers (turn left here). Once set up the app runs in the background and plays an audio file via a very discreet bluetooth headphone piece that sits in her ear. The audio file could be Shamreen’s own voice or that of whoever laid the tag with her in the first place, ideally a mobility worker as these are trained professionals who know the best way for a partially sighted person to move through a space. 

Shamreen’s difficulty with accepting the traditional tools for a partially sighted person meant we had to create a new way to support her that we might not have found if she’d been happy to use a white cane immediately. Having spoken to mobility workers, this app could prove very useful when teaching people mobility as it can log all the detail along a route. It is extremely personal and customisable to the individual. For Shamreen it’s a way of giving her a taste of the empowerment she can get from accepting tools designed to do so, for others it’s a security whilst learning something extremely challenging - how to move around in public when you cannot see.
 

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