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This week, Fiona Waters, Community Engagement & Outreach Officer at Retina International, interviewed Alex Pepper, Head of Partnerships at Thomas Pocklington Trust, and patient advocate for those who are blind or part-sighted.
Alex was born with bilateral retinoblastoma, a condition whereby he was born with cancerous tumours in the back of both eyes. The condition was more advanced in the right eye, so at the age of fourteen months, when he was diagnosed, he immediately had his right eye removed. He was treated with radiotherapy and laser treatment in the left eye, which allowed him to keep a decent level of sight while growing up. In 2016, at the age of 25, Alex underwent his so-called “second sight-loss journey”, when the culmination of a recurrence of the retinoblastoma, a cataract, and three retinal detachments in his remaining eye resulted in the loss of nearly all remaining sight.
Today, Alex is the Head of Partnerships at the Thomas Pocklington Trust in the United Kingdom. The Thomas Pocklington Trust support those who are blind and partially sighted in the UK through their focus on employment, education, and engagement. They also support the sector through grant funding, trying to build a more collaborative and sustainable charity field for people living with sight loss.
Fiona: Hi Alex! Could you share a bit about your journey, and what lead you to your role as an advocate for those living with low vision?
Alex: It’s a good question actually, because really that “second sight-loss journey” as I call it, from 2016 onward, was a massive adjustment for me. I essentially had to learn how to do everything again. Certainly [while] becoming an adult in my late teens, early twenties, [I was] coming to accept my sight loss… that it was a part of me, [and] it wasn’t going anywhere.
I’d spent my whole life trying to hide my sight loss, from everyone; friends’ colleagues, potential girlfriends, girlfriends I actually had, for as long as I could make it out that I could see more than I actually do. So when I went on that journey of losing everything and starting again, and actually just a greedy process of accepting who I am, I realised that I had actually been holding myself back in many ways before by not being who I am, accepting that there’s nothing wrong with being blind, and that kind of set me on the path for wanting to share that message with others.
Fiona: What were some key supports for you?
Alex: I’m quite a resourceful person, so there was a lot of me doing my own research and trying things out. One thing was changing from using a magnifier to text-to-speech software on my iPhone.
The biggest turning point, or catalyst I suppose, that got me going was when I contacted my local authority, and started on my rehab support journey. [I learned] how to do basic things like cook and make the tea – I’m a keen cook, so that was important to me. Learning how to use the long cane, or accepting first that I had to use the long cane, made me build my skill and experience using it. It was important to get out of the house, particularly if I wanted to live on my own, which was something I had really enjoyed doing before [I lost my remaining vision].
From my first rehab in May/June 2016, to December, I had gone from not leaving the house for a few months unless I was with someone guiding me… to actually commuting up to London independently, using trains and busses to start a full time role.
Getting back into work really helped with my confidence and motivation, and just feeling like I had a daily routine and a purpose. [Me and] my then girlfriend, who is now my wife, decided to get ourselves on the property ladder that year – it had already been a goal of ours. I couldn’t control that I had lost my sight… so in my mind I thought “I can still control following that goal that I had in my head anyway”.
I’m a big believer in the power of peer to peer support. It’s almost more powerful than any other service you can do. Speaking with someone with a lived experience makes such a difference.
Fiona: Did your personal goals change much when you had your second sight loss journey?
Alex: I think in the short term, no.
My goals were always to buy property, get married, and have children. I think what it has changed is my appreciation of things, and knowing what’s important. it’s certainly changed my mind-set, more than my goals.
In terms of, as I said, accepting my sight loss. I’m not worried about hiding it anymore. I’m more willing and confident to take new opportunities, go to new places. I would only ever go places, whether that’s clubbing or any new place with people I knew and felt comfortable with whether it be partners, very old, close friends, family. Whereas now, I’ll go anywhere. You know if I needed to go do something on my own, in America, I’d go.
Fiona: Was there any particular reason you felt the need to hide your sight loss in the beginning?
Alex: A part of it is probably arrogance. The idea that it’s not very manly, that it’s immature, or vulnerable to ask “could you help me”. I know now that there’s nothing wrong with asking for help. But back then I used to see it as a weakness. Anything my friends with full vision would do, I would do too to try and prove, to myself more than them, that I didn’t care. I thought that if I asked for help that that was going against everything that I believe in, or wanted to believe in. So definitely a bit of denial there!
I’ll give you an example:
Victoria station in London, a very busy station, has about 20 platforms. I could never read the boards. I would have to use my phone to read the app.
I knew that the station I went to, every single train platform 15 to 18 would call at that station at some point. So what I would do is I would just walk towards the barriers, and whatever line of people looked like they were in a rush the most, I would assume that that was the next train to go, and do you know what? It worked, I got it right every time.
Whereas now, If I go to Victoria, I would meet someone at the gate, they would guide me through the underground, they’d bring me to the next person and then that person would guide me down to the seat on the train. And I enjoy that, I get to have a conversation, get to know them. At my regular stations they all know me by name.
I just think, why did I put myself through so much worry, all those years, when I could have just asked for help? When I could have just asked, “which train leaves next please?”
My current wife, she was friends with my sister for years and she knew me and knew that I had issues with my eyesight but didn’t know much. After the first couple of dates, I still hadn’t addressed it, the subject hadn’t come up. So if I booked a restaurant, I would go online, revise the menu, and then when we went I would pretend to read the menu. It’s stupid really, when I told her that a few months later, she was kind of offended really, wondering “why didn’t you just ask me?” But those are the sort of lengths I would go to.
The only other big turning point for me was going from being a cane user to having a guide dog. I suppose that was the final step to being as independent as I’ll ever be. That was an epiphany moment for me – it was amazing, because I was able to walk around the block, with my trainer following close behind… but it was also emotional, because I realised that this is as good as it’s ever going to get. It wasn’t the end of the road, but it was the end of the road in terms of level of independence.
Fiona: What, in your opinion, are the biggest obstacles or barriers to the wellbeing & inclusion of those living with low vision, and how do we address them?
Alex: Lack of awareness. The simple things can be the most frustrating, with people making assumptions because they’re not aware. And that seems to be a generational thing – years ago people who were blind lived a certain type of life, could only do certain types of jobs. That’s changing, mainly because of technology… but also due to general understanding.
Also when it comes to looking for work… you know that people who are interviewing someone who is blind is wondering how they’re going to be able to do x,y and z, they think that it’s impossible, because they don’t know and are too worried about asking. I think that is a factor as well, is that fear of asking simple questions, like “how would you do that?” or “how can we help you?”. I think people are too worried about the red tape or getting themselves in trouble.
Fiona: What would you say to members of the public in those scenarios?
Alex: Just ask. It’s okay, it’s no problem. I’m not going to break down and cry because you asked me if I need help.
There is however a balancing act between asking, and people who are visually impaired being willing to talk. I have come across a lot of people who are frustrated and say “oh they should just know!” but I say, that if we don’t tell them, they’re never going to know, so there’s no point just getting angry.
Fiona: If you could give just one piece of advice to a younger Alex, what would it be?
Alex: Accept. When I say younger, I’m thinking of before I lost all my vision. Accept your vision impairment. It’s okay. It’s okay to not be able to do everything.
If I could give a second, it would be to look for the support. I didn’t know any blind or part sighted people before 2016. I had gotten information, but didn’t engage in the visual impaired community at all. Probably because I was trying to live that “normal” life like my friends and society. If I had looked into things a little more I might have known a bit more about access to work, help to get me into jobs, and the support that was there.
Fiona: You recently became a dad! How was the journey to becoming a parent while living with a visual impairment?
Alex: Well I always wanted children, I’ll say that straight off the bat. When I lost the remaining of my sight, there was a fear of “can I still be a dad?”. There was never a question of whether it was still something I wanted, but more which route to go down.
One option was genetic counselling, which was what we ended up going for. Which is where they try to identify the mutated gene that causes the condition I have, the RB1 gene, and then they create embryos and look for embryos that don’t have that gene. After that then it’s just more like IVF.
The other route is to do nothing. In my case there was a 50:50 chance, and when the baby is born, if they’ve got the mutation, then they are treated with chemotherapy or radiotherapy.
Then there is the option to test at 12 weeks, see if the embryo has the mutation, then make the decision for termination of pregnancy.
So three very different, but equally very difficult [options]. So that was the biggest decision point for us.
After we got pregnant, there was the fear of how it was going to be for me. I think to be honest, on reflection, there might have been more fear for [my wife] than there was for me; “how is going to do this, is he going to be able to do this, is he going to be okay?” [by the time] the baby came it hadn’t been as difficult as I’d thought.
I’m more fearful for the future, when it’s very difficult to or almost impossible to say “right son, me and you, let’s go to the park and play football, and have a boy’s day” and to be able to do that independently and safely. That’s the most difficult thing for me at the moment. It’s not easy, but anything that’s worth anything in life is going to be difficult, whether you’re sighted or not.
Fiona: What is your vision for the world, 10 years from now, for those who live with visual impairments?
Alex: Ultimately, I want there to be more solutions for people to get their sight back. My cousin has Choroideremia, and he took part in a pioneering research project a few years ago, that not only stopped his sight loss, as he was going blind quite quickly, but also got some of his vision back in one of his eyes. So I would love to see more of that, and I suppose the bionic eye, that is the ultimate dream… and certainly still my dream personally.
But before that, and would have to happen as well as all that, would have to be that direct pathway, or smooth transition between diagnosis, treatment and rehab, and for it to be resourced properly.
Visit the TPT website: https://www.pocklington-trust.org.uk/