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Retinitis Pigmentosa and data visualisation – Ashfaq’s experience

It’s hard to introduce myself without it feeling like I’m announcing myself at Alcoholics Anonymous, but here goes I am Ashfaq, I’m 32 and have Retinitis Pigmentosa (RP). In this blog I want to share some of my experiences working while dealing with the condition, hopefully you find it interesting and don’t get too bored – and I’ll talk about some of the ‘hacks’ I developed during my different roles.

First diagnosis of Retinitis Pigmentosa

I was diagnosed with RP in 2012 when in my first job following university. I was probably affected throughout my school years too, just never knew it. With RP, low levels of light make it difficult to see, and who hasn’t accidentally sat on someone when trying to find their seat at the cinema? It can’t just have been me! Day to day I wasn’t really affected: I had an active social life and was doing well at work. My role required me to work with large datasets, analysing and processing data – essentially staring at a screen all day working with spreadsheets. I was registered partially sighted back then but didn’t take up any access to work assessments or make any considerations for the future. Looking back, I suspect I was reassuring my friends and family that I was okay more than myself. My vision was slowly worsening, and I started to make minor changes to my working habits. Larger icons, larger mouse pointer with that weird mouse trail thing – which weren’t particularly different to anyone else’s setup.

New roles

In 2015 I moved into a role in healthcare – something I was much more passionate about. Not long after starting, I got my first white cane, a guide cane. I struggled with this at the time, especially when having to meet old friends who didn’t know me as a cane user: being the ‘blind guy’ wasn’t particularly appealing. Sometimes I got away without people knowing, but there were times when people did find out or the time to mention it came up; then the mask would drop, and I always felt awkward. This came from not wanting other people to be awkward or uncomfortable or feel like they had to act differently… I suspect this is something that many people experience.

However, in this job I was mostly secretly visually impaired. I did engage with Access to Work and had a relatively useless assessment. My manager at the time was brilliant though, and keen to ensure I had everything I needed. It just kind of happened that I didn’t know what I needed. Despite this, I progressed in my role and slowly transitioned to using more tricks here and there to get around the different ways my RP affected me. Eventually, I was able to gain a new role in a more senior managerial capacity where I discovered the ultimate coping mechanism – delegation.

I am only half joking of course, I really enjoyed managing a team. I’m very much a team player and teaching, supporting and mentoring is just something I’ve always been drawn to and I like to think have been quite natural at. Of course, you’d have to ask the people I managed….

Career progression

My next career step led me to a much larger organisation: 2000 odd employees split across two offices in the City. It was hectic to say the least. I had been at my last organisation for four and a half years, had gotten very comfortable and taken for granted how my vision didn’t really impact me. Things were very different at this new job. They were welcoming and open to support me however they could, but the onus was on me to know what I needed but the reality was that I was still clueless.

Their machines ran on a new operating system, so all the tricks I used before were no longer relevant. I needed to pick up functionality of programs new to me. All these issues were compounded by being in a more senior role. I just couldn’t hit the ground running like I had in previous jobs. I found myself blaming my problems on my sight or lack thereof. This is where I was wrong to just blame myself. Moving to a new company, picking up new working practices and meeting new people are difficulties everybody faces. If you have ever felt like I did, remember it isn’t just you or because of your vision.

In 2019 I decided I should probably engage a bit with others dealing with being vision impaired (VI). I joined the RNIB Connect group on Facebook and it led me to tandem cycling with Merton Sports and Social Club (MSSC). I went along and amazingly this was the first time I met another person who was vision impaired. I had been diagnosed for 7 years yet not once had I reached out to anybody else going through what I was. Through MSSC, I met people I was able to share my experiences of sight loss with and knew they truly understood and could relate with their own experiences. I really recommend reaching out: learning from others about how to cope with certain issues, things available to you both professionally and recreationally or just having somebody to moan to has changed my life.

Moving into the sight loss sector

I now work for Thomas Pocklington Trust, a charity that supporting blind and partially sighted people. I still work with data and stare at spreadsheets, but I am surrounded by experts, colleagues who are themselves VI and sighted colleagues who have vast experience in the sector. Every VI person doesn’t need to work within the VI sector but having the right support is paramount. I get that from those around me but there are forums and workshops designed to support and I’d encourage you to seek them out. I have no doubt that its possible without it but trust me it just makes things way quicker. You’ll end up being proactive rather than reactive in the way you manage.

Being visually impaired and working in a field which is all about data visualisation really doesn’t seem like the best match does it? But it is possible with the right adjustments. RP is degenerative, and there are times I feel like I’m on top of things and then some other thing comes my way. However, information and support make me feel like I’m ahead of the curve rather than constantly falling short or being taken by surprise. I may have to use magnifier software or JAWS in the future, but I actually know about this stuff now. A year ago, I genuinely had no idea.

Some of Ashfaq’s top hacks that you might like to try:

Notepad++: This is a text editor but you can use high contrast setting (white text on black background for example). Notepad++ has quite extensive customisable colour/formatting preferences so if you’re doing a lot of text editing then check it out.

VirtuaWin: This allows you to partition your work into different ‘screens’ and flick between them according to what you want.

AltMove: Essentially it lets you move windows about more easily (if you have two screens perhaps move a window to the other screen by click and drag). Instead of having to place your mouse right at the top of a window you can hold the Alt Key and drag the window with your mouse anywhere within that window.

High contrast mode on Windows: You can find this in your settings, and it has a few different contrast options.

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