A day in the life of Sara Milner
Sara Rebeca Milner is the disabled students officer (2007/2008) at Liverpool Hope Students' Union.
Sarah is pictured second from left
Firstly, I’ll explain what my disability is so the rest of the story makes sense to you.
I have Stickler Syndrome, which affects heart valves, cleft palate, joints, and retinas. In the past three years, I have had a detached retina in my left eye three times and, when I was 16 (I’m now 19), I had to make a decision – to keep living, knowing I had to have more operations and keep on being in pain, or to have my eye removed and a prosthesis put in its place. I chose the latter.
After six major operations – within the space of two years – I’d had enough of spending my time in hospital instead of what I would have preferred, to be in school with my friends.
My typical day varies as I have different lectures on different days. But, the most common is getting up at 8 am and getting ready to go to university. The small things are annoying, like trying to put make up on and accidentally getting some mascara on my prosthetic eye. Obviously, if this happens during the day, nobody tells me and I feel like an idiot when I later look in the mirror knowing I have walked around all day with a black mark on my eye and people have been wondering what it is. I’m lucky, as I have good friends who know I would rather them tell me than have me walking around looking stupid.
I have not always been very open about my disability, and by this, I mean asking for help in front of people or making an issue of my sight problems. But I find that when people don’t know, they think I’m just being rude or stupid. A good example of this is when I’m waiting in a queue to pay for something in a shop, or to get on a bus. If people are on my left side, I simply cannot see them, as my peripheral vision is restricted.
Another thing I find irritating is the fact that my sense of depth is non-existent now: I can’t tell how far away things are. Its not too bad at the moment, as I have adjusted to only using one eye, but I do notice it when people throw things to me, I can not tell how far away it is.
Throughout high school years, after the troubles with my eye, it seemed to give people more of a reason to bully me, and all I heard were the usual taunts of ‘pirate’. I couldn’t understand how people could be so cruel, to know what a big part of my life had been taken away from me at such a young age, and to use it against me. I soon became proud of what I had been through, though, and know that the experience has made me a stronger person.
When I was trying to overcome this negativity, I tried to block it out completely, as if it wasn’t happening at all. I would spend time with my friends who understood how I felt and what I had been through. But I did not talk about it to anybody, not even my parents. I felt like my mother was blaming herself; she had gone through exactly the same thing when she was just 23.
I am better at speaking publicly about my disability now, and I would not be who I am today if this had not happened to me. I give thanks to all of the positive attitudes that have surrounded me. My family and friends have given me the confidence to talk to people when asked, but I am still not the sort to open up and tell people everything, if I feel they might use it negatively.
I feel I am treated like every other person in university, as only my close friends and tutors know about my difficulties. I also have a note taker in my lectures because if I concentrate on the board too much it can strain my eye. The note-taker is an amazing help and I find her very useful when I’m having a bad day and my eye is hurting. If I’m honest, I used to be embarrassed about going to her and collecting my notes at the end of a session, but now I’m much more comfortable and I know people in university are more mature than those who used to taunt me in school.
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