Coming to Terms with Sight Loss

This episode of Our Voices introduces Seema, a woman who has struggled with coming to terms with sight loss. She also talks about battling to regain her independence during the lockdown.

Car aficionado

As a child, Seema was a big fan of cars. Her father was a car mechanic and she would roam around his garage and pretend to drive the cars.

 “My passion was being able to drive. I always thought, when I grew up, I’ll have a car, I’ll be able to stop at the petrol station, I’ll go and stop and get some shopping. So I used to roleplay all this sort of stuff when I was about 6, 7, 8.”

Rare eye disease

At the time, Seema had between 25-35% of her vision, which meant that she was largely independent. It was when Seema was 9 years old that her parents decided to take her to see the doctor due to fears that her vision was getting worse. Upon assessment at the eye doctor’s, Seema received some devastating news.

 “He just said, basically, you’re going to go blind. You will go blind. That’s it.” Seema later discovered that the cause of the deterioration of her vision was a rare eye disease called retinitis pigmentosa. This is a rare genetic disorder which leads to a loss of cells in the retina. Describing her initial reaction, Seema says “it was quite a shock… quite numbing… I felt that my world had been shattered.”

The best days of her life

Living with a visual impairment meant Seema would need to move from her mainstream school to a school for people who were blind or had sight loss. Making this change turned out to be beneficial for Seema in coming to terms with sight loss. 

Firstly, whereas she had been the victim of bullying at her previous school due to her partial sightedness, she was now accepted as she was surrounded by people who were in a similar situation to herself. She was also able to learn vital skills, including Grade 2 Braille and touch typing.

The downside was that the school was located quite a distance away from where she lived. Yet, overall, her new school provided a very positive experience. “It was a very sheltered environment. It was a very safe place to be. So my best times were at school, we used to have such a laugh, it was wonderful.”

Dealing with denial

However, as an adolescent, Seema found coming to terms with sight loss more difficult in the outside world. “The anger was where it was me thinking: Why me? Why did it happen to me? Why is it I’ve been given this eye condition.” Wishing to deny the reality of her situation, she would sometimes not mention that she had a visual impairment while out with her family and friends.

An inappropriate job

This denial continued into Seema’s early adulthood. But the pretence was only making the situation more difficult for her. It meant that she would take on jobs to which she was not suited, such as working at a fast-food restaurant.

 “I couldn’t use the till and work in the kitchen cos it’d be dangerous. I couldn’t work on the tills because I couldn’t see the tills. So front house basically, cleaning away, tidying things away, sweeping up… which is quite visually stressful as well. But I remember one time I’d chucked someone’s food out. They just went to get something and I just thought they’d finished. I just chucked their food out.” 

The job did not last long. 

Continually losing sight

As Seema got older, she continued losing sight and it took greater levels of energy for her to persist with the pretence of being a sighted person. For many years, she resisted using a cane. But as her vision approached 2%, she knew it would be necessary.

 “I remember the first time I pulled that out and my husband said to me, ‘Try this out in New York, Times Square.’ He said ‘No one knows you here.’ And I used it and it was brilliant. But to use it back in London, it took me a lot longer to actually start using it.”

The final straw

Seema’s difficulty in coming to terms with sight loss meant that she spent more and more time at home. Her loss in vision had made her feel more vulnerable and she had become scared of leaving the house. Ironically, it was the national lockdown following the Covid-19 pandemic which encouraged her that she needed to make a change. 

“The thing is, when you have a disability, you have so many restrictions already. When COVID-19 hit, basically, it made life much more difficult for people who are vulnerable and disabled. It exacerbated the situation of people like myself… I was sick and tired.. I just wanted to have my own freedom back.”

Accepting vision loss

Finally accepting her vision loss, Seema decided to call a guide dogs charity and was informed that she would need to improve her skills using the long cane to use a guide dog effectively. This was the motivation Seema required and her skills improved rapidly. Within six weeks, she was able to visit the local shops and take exercise outdoors by herself.

Following this, Seema was able to get the local bus into town and she recounts the first time she was able to have a coffee in her local coffee shop by herself.

 “[I was able to] actually find Costa, which is down the road, open the door myself, go to the counter, ask for a drink, pay for the drink myself. Then locate a table and sit down, have a coffee on my own. It was the best feeling I’d ever had in my life for such a long time because I had a real sense of accomplishment. I’ve done it on my own.”

A turning point

Coming to terms with sight loss proved to be a turning point in Seema’s life. Following this she sought to spend much more time within her community. This led to her becoming a local councillor in May 2021. She also made it to Shaw’s Disability Power 100 list, which celebrates those with disabilities. 

Seema has also set up a disability training consultancy called Blind Ambition. “My passion at the moment is to try and get people back into work, or give them a skill set to have the tools to be able to get back into work.”

A personal message

Reflecting on how Seema wishes society at large would view those with disabilities, she says this: 

“I want people without disabilities to see those with disabilities just as a person. Yes, that person is going to have additional needs, they may have a different way of actually doing things. They might have different ways of accessing information or moving or listening or seeing or whatever. But, first and foremost, they must see that person as an equal human being to themselves and not make any judgments about them and not make any assumptions and not think that you know what’s best for them because you don’t.”