Perspectives #5 - "Sight Loss, Corneal Transplants, and Disability"
"Perspectives" is a series of blog posts written by people different to James, the usual writer of this blog: a white heterosexual non-disabled male. Through this series, we will hear from people from Black, Asian, and Minority Ethnic, LGBT+, and faith communities, as well as women, people with disabilities, and people from a low socio-economic background. Each individual is speaking from their own experiences alone, not speaking on behalf of a group of people. The aim is for all of us to hear voices of those who are different to us, so we can understand and build a culture in our schools and organisations where the wellbeing of all is at the centre, not just the wellbeing of those who are the same as us.
Kate Holden is a specialist advisory teacher from Liverpool, providing autism outreach support to schools and businesses across the northwest. She is also passionate about mental health and well-being, delivering interventions and training in this area. Fifteen years ago, Kate was registered disabled under the category of severe visual impairment for a period of two years whilst undergoing eye operations, where she received new corneas from two different organ donors. This is her retrospective perspective of that time, when she was working as a primary school teacher and SENCo. I would suggest checking out this sight loss simulator before you read, to bring some context to Kate's words: hollows.org/sightsimulator. (Her condition was on the "severe" end of the spectrum.)
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“We cannot keep treating this condition, Kate. It’s the end of the road and we are going to have to consider transplants now.” These were the exact words of my optometry consultant fifteen years ago, when I was twenty-six years old.
He then came over and gave me the biggest hug, while I broke down in tears. Maybe not so professional of him, but very human, and that’s exactly what I needed right there, right then: it had hit me like a tonne of bricks.
In my late teens, I had been diagnosed with a relatively rare eye disease called Keratoconus. For many people, the disease progresses slowly, sometimes stops, or the eyesight can be fixed with special contact lenses. However, for a small number of people, the corneas start to scar and you lose vision, only managing shapes and colours. This was me. I was extremely young for this to be happening and my disease had progressed quickly.
Back then, I worked in a really ‘tough’ primary school. I was also the SENCo, with a third of the pupils on the SEND register. It was a very busy job. The kids needed so much trauma-informed care and we were really good at that; what we were absolutely awful at was looking after ourselves and each other.
So, the next day I was back teaching my primary school class. I acted like nothing had happened and I did this for weeks. I was present but not there. I had all kinds of terror swirling through my mind. I had lovely colleagues who I talked to as time went on and they tried to be supportive, but the thing was, nobody was able to really understand what this could feel like, including me. I was terrified about the operation and its success. Then there was my job, which I adored. There was my life, which would change dramatically. And there was time: the time I wouldn’t be there in work with those kids, the time it would take me to recover, the time I had to hit all my rehab goals, and the time everything was going to take when I did get back to teaching.
Some colleagues didn’t know what to say to me, so said nothing. There was no well-being support available in school and as many educators will know, if you work in a ‘tough’ school, it can consume you and you are left so drained at the end of the day that you just don’t have anything to give to colleagues who may need you. You were expected to sink or swim.
But let’s move forward. I had the first operation on my left eye (they never do both together). It happened quite quickly as there is relatively little wait on the transplant list for corneas. The only thing they will do is match you with a donor of a similar age so the cornea has a good chance of lasting a while. You never get to know anything about that person, but you really do wonder and you cry for them, for their family and for the unsurpassable gift they have given you. I then spent six months in a visual rehabilitation centre, where I learnt to use a white cane, touch type, use speech software and develop life skills. I got through this time just about okay, because I knew being unable to see was not going to be forever and I had access to counselling. I also met my future partner there, who was the most inspirational and motivating person (and still is), despite the fact he had just lost his sight forever. He held me up every time I fell down, and there were so many falls.
In all the time I was off school, it was felt too ‘risky’ for me to visit my workplace due to health and safety concerns around my sight loss. So I spoke to a few colleagues, who were also friends, on the phone, and that was lovely. Then came the help and the support and the lovely, kind, understanding people who really got this and how it felt. The RNIB (Royal National Institute of Blind People) did a full assessment of my needs and listed the skills and equipment I would need to be able to return to work. Through Access to Work, these things were provided, as well as taxi transport to and from school and a Personal Assistant who would be my eyes when I needed her. My headteacher was really keen to support me. He decided to put in extra PPA time for me because planning and marking were going to take me forever, and they did.
So I went back. I was determined I could do this. I’d already decided to let go of the SENCo role for a while for my own well-being. There was no way I could manage the paperwork: it took me two hours to type one lesson plan! My PA was amazing at being my eyes, but after a good start things soon got harder. Some staff members resented the fact I had an extra adult in class when most were sharing one TA between four classes. There was little awareness of sight loss so I was just left to get on with it. Our headteacher went on long-term sick, and because the school’s finances were dire, the first thing the deputy stopped was my additional PPA time. This would now be considered ‘a reasonable adjustment’ under the DDA (Disability Discrimination Act), but this was only just coming into force back then.
So, without that support, I worked every night until midnight and most weekends. I had dreadful headaches from straining to make my eyes try and see the laptop screen so I could work faster, but I couldn’t. I needed all documents in a size 24 font on a certain colour of paper, which I was able to see. This didn’t happen so I found myself lost in meetings.
I knew there was a culture of ‘just get on with it’ at that school and I knew it would be a long time before anything changed. More staff were going off sick, and I knew I had to prioritise my own well-being before I sank. I wasn’t strong enough then to challenge the norm so I did what a lot of educators do in a hopeless situation and got another job. By that time, my vision was stable in my ‘new’ eye and I could see perfectly with glasses so my disability wasn’t so much of an issue in the next season of my life.
I’d just like to close with some thoughts around well-being:
If you have a disability
Try to get the backing of senior leadership teams and don’t be afraid to fight for extra support that you need. SLT should look into providing flexible working options, if needed.
Use all the support that is available to you and don’t feel guilty about this. When someone asks if they can help, say yes (I never did then, but I would now!).
Know what works for your well-being – and it’s not staying up planning til midnight! Understand that your to-do list will never be finished, set yourself a cut off time, stick to it and do something that makes you feel good in your own time.
If you’re supporting someone with a disability
Make sure staff receive disability awareness training in the relevant area. Even now, visual impairment is not addressed as much as physical disability and there’s some amazing training out there where you can virtually ‘experience’ sight loss.
Consider assigning a well-being mentor or coach to a colleague: someone who is compassionate and has a strong ability to empathise. Often what we need is a listening ear, not a magic wand.
Do ask someone about their disability. You don’t need to solve anything for them but you do need to acknowledge. A culture of open dialogue around well-being benefits everyone.
Bear in mind things are going to be a little harder and take a little longer for someone with a disability, so be patient and give extra time or resources to them. Ask them how you can help.
I'd like to finish this blog by saying two things: wellbeing is a journey, and the secret to making the journey a good one is to commit to it and believe in yourself and your strengths.
And to my two organ donor angels, I cannot end without thanking you for giving me my sight and my life back. I think of you always. I am privileged to have you both as part of me.
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