Rollercoaster of Possibilities
Zein Al Maha Oweis (Zee) is a PhD Student in Media and Cultural Policy, researching the impact of Facebook on shaping perceptions of disability. In this blog, she shares her experience of living with Retinitis Pigmentosa (RP) and how she has coped with a multitude of new challenges stemming from the Covid-19 pandemic.
You might have seen me walking around Byres Road, the Glasgow Botanical Gardens or Kelvingrove Park. I do not know if our paths have crossed but I am the petite woman wearing a black coat and holding a white or red cane in her right hand. In honour of Retinitis Pigmentosa (RP) Awareness month in February, I wanted to talk about my experience living with RP, my biggest challenges and how I have adapted to remote working during the past year. If there was one way to describe my journey so far it would definitely be a rollercoaster of possibilities.
Retinitis Pigmentosa (RP) is a group of hereditary retinal dystrophies responsible for the degeneration of the retina which can lead to blindness. Sight loss happens gradually but differs person to person, and can cause loss of night vision, peripheral or central vision and colour blindness. RP affects 1 in 3,000-7,000 people worldwide and symptoms can present from birth or later in life. In the UK alone, 1 in 4,000 people have Retinitis Pigmentosa. Sadly, there is currently no cure, however, with the evolution of the medical field, progress towards treatment is underway.
Even though I have a double mutation, no peripheral vision, signs of cataracts, slight colour blindness, no depth perception, clumsiness, and use a cane, I tend to feel as if I am one of the lucky ones with RP. I was diagnosed when I was six after my mother noticed I had difficulty seeing in dimly lit spaces. I was told that during my teenage years I would become blind but, I am 26 and still have my central vision. I lost my peripheral vision when I was 21. I started using my trusty cane when I was 16 and never looked back. Wherever I go so does she; always accompanying me on my journeys around the world.
Before digging deeper into the subject at hand, I’d like to share a few milestones that have led me to where I am today. Despite my disability, I have been fortunate enough to study in London and Washington D.C. and work and intern in the UK, US and Jordan including at The Library of Congress, RespectAbility (NGO), The PIE News and Action Against Hunger Jordan Mission before moving to Glasgow to start my PhD in Media and Cultural Policy. My research focuses on how sentiments on Facebook relating to disability affects the mentality of Jordanians and how it is related to the taboo of disability in Jordan.
I have always looked at life in a glass half full kind of way with a smile filled with optimism. My friends would say that I am a bubbly, chatty person, but it took time to accept and adapt to life’s challenges. One of the biggest hurdles I have faced was the shift to the online sphere and introduction of remote working during the Covid-19 pandemic. These past two semesters I have been working on my contextual chapter, which involves a lot of writing. The countless Zoom sessions and time spent on my laptop have greatly impacted my vision; staring into a screen from 10am to 10pm really takes its toll. What might take someone with normal vision half an hour would typically take me two to four hours.
The pandemic has also restricted our ability to communicate with others face to face; most interactions these days are through a laptop or a phone. My biggest strength is my hearing and it is the way I view the world- it is how I understand people, including my friends, my family and my supervisors. However, verbal communication is no longer the most common way of reaching others- texts, email and social media are making a comeback due to the pandemic. As a person who is highly reliant on vocal ways of communicating, it is difficult for me to replace this with text-based mediums, as I tend to misunderstand the emotion behind the message.
With a multitude of virtual communication tools available to us today, allow me to tell you how technology helped me turn the challenges of the pandemic into opportunities:
First, I started to use voice messages when connecting with friends and family. This lessened the strain on my vision and also gave an indication to others to reply in the same manner (if they felt comfortable doing so) which makes it easier for me to understand the tone of the message. Whilst I am far away from my family and familiar faces, listening to voice messages makes me feel closer to them.
I also made sure to contact the Disability Service for recommendations of tools to help me with my reading and writing when my eyes became strained. They suggested a number of tools and software to use, such as Read and Write software, which would read the highlighted text from any document.
Whilst working on my research, I took plenty of breaks. This means that every couple of hours I would step away from the computer and go for a walk, grab coffee with a friend or even put on some music and dance around my flat.
I made a mental map of my surroundings by memorising my route on and off campus through the use of spotters. By using different buildings as points on my mental map to remember directions, I am able to walk comfortably, confidently and safely around Glasgow when I am on my own.
And most importantly I made sure to ask for help when I needed it the most. I am not ashamed of asking someone to help with reading, typing, cleaning, cooking or even walking with me to campus, because I have accepted that there are things that I have difficulty doing on my own.
Some people might not have known what Retinitis Pigmentosa is, or that February is the month we share our stories, experiences and spread awareness about RP. I do that just by simply walking everyday with my cane. Having RP does not defines me- it makes me stronger. I believe that behind every woman and her cane comes a life lived on a rollercoaster of possibilities, filled with laughter, knowledge, and unexpected surprises.
The Disability Service is available to all students with disabilities, learning difficulties and medical conditions, and new and existing PGRs are encouraged to register if they would benefit from their support.
