What's In A Name - Nystagmus And Me!! - Sal Mannan

Over the last few years, perhaps in the last two or so years now, I've discovered new things about myself. Been given newish diagnosis, found names to old ones. We as people like giving labels to different things, putting things into neat little boxes. It helps give a description, give an explanation, or understand things. At least with the latter being the case for me. Society have labeled and categorized people for years, putting them into groups, be it boy, girl, strong, weak, stupid, clever, but of course these are basic labels. A more complex grouping would be groups within groups, like for instance different disabled community of groups, like sensory impaired people, neurodiverse people, disabled people. As well as the opposites for none disabled people being, able bodied people, neurotical people, sighted people etc. Of course there is a good reason for that, and these labels in a way are needed.


However people of today, in the modern society are wanting to drop labels with the drop of a hat. Ok not everyone, but some people hate labels. I hear the questions often asked like, 'why do we need labels? Why do people insist in putting people in boxes?' Nobody likes to conform to societies norms, and that includes being labeled apparently. Everyone wants to be something outside the box. While I agree sometimes labelling isn't the best thing in the world, and in some casing putting labels isn't helpful, but I do think that in many cases they can be important. I think that without these labels, it becomes hard to actually differentiate different groups of people, especially when discussing diversity. I could go on with a list of why it is still important today for some labels, and why we need them. But today I want to look at diagnosis, and the need for a name to certain discoveries within our bodies, certain characteristics, behaviours, issues, problems and other things that involve having a condition that needs diagnosing. 


What prompted me to think of this was recently, I spoke to a few people about wanting an assessment for autism. I was curious as to weather I had it or not, if perhaps it was overlooked with me being female, since we do have it in our family but only in the boys so far. Plus with me having congenital rubella syndrome, I just wondered if the possibility of me being on the spectrum was there. I've noticed traits in myself, and wondered if I could be on the spectrum, or if my condition congenital rubella syndrome could just possibly be symptomatic in the same way and look very much like autism. 


Anyway the reaction I got from one or two people was, ''why the heck do you want autism? or why do you want another label on top of all the ones you've already got?' Why can't you just accept things as they are?' The thing is, it's not about wanting to be autistic, or wanting another label. It's about giving a name to why certain things are the way they are. Why I have some of these traits, and what are they linked to. I just want a reason, and to understand the person that I am, and to understand my body and labels do that for me. Let me explain with how having a label has helped me in the past, maybe then people will understand why having a diagnosis with a label can be helpful in certain instances. 


One of the biggest symptom of congenital rubella syndrome for me, is having a visual impairment. It is the one disability from that umbrella of multiple disabilities and defects that make up CRS (congenital rubella syndrome), that affects me the most. I was born with congenital cataracts, but with that I also had other dysfunctions of the eyes too. One of them being nystagmus. I'd grown up hearing of congenital cataracts, I'd known I'd had that since I was a child. The doctors gladly gave it a name, but I only had a vague idea about it. I knew that I'd had my lens scraped out, at the time, although I had no name for that. Just cataracts, I didn't know the name aphakia until my 30s. But I knew that because I didn't have any lens because of cataracts, everything looked smaller than it should, I couldn't see details, couldn't read small print and so on. I knew they caused problems for my vision. But cataracts didn't explain everything else.


I knew that my cataracts meant that I couldn't use both eyes at the same time, they didn't work the same way other people's did. They worked as a tag team, not in a tandem like everyone else's. I actually didn't know this until I was in my teens, my optician explained it to me. Before that I didn't even notice that I didn't use both eyes together, either that or I thought everyone's eyes worked like that. Either way I experimented a little to see how true it was. it was actually quite painful trying to get them to work together. (If you're eyes don't work together and only work one at a time, don't try forcing them to work together. They won't be happy and you'll get hurt for your efforts). With my eyes, when one is working the other is sleeping, and when that one gets tired, the other one takes over while that one sleeps. But I didn't notice too much until he said. 


Anyway he also mentioned that I scan things, rather than look at things. But he hadn't given me a name. Again this was something I thought everyone's eyes did, I barely noticed my vision moving from side to side, but when I did, I just presumed that was normal. He was actually talking about nystagmus at this point, but I didn't get to know that until years later. The thing with nystagmus though is that it comes with other problems, ones that are not just about the visuals. But no one had explain these extra problems that came with them. I spent my whole childhood not understanding why there were certain things I struggled with that others didn't. The biggest issue I had was balance, but no one told me that had something to do with my sight, and it had a name. 


I was often reprimanded for not being able to walk up and down hills, slopes, and anything with a slant. I got eye rolls from people when I needed two hands to climb stage steps with no banister or rails to help, two hands to hold when walking along the thin side of the bench when turned upside down in P.E. Got made to feel stupid or bad for not being able to catch the ball, it made no sense to people since I could see the damn ball, so why couldn't I catch it? Which made me feel terrible for not being able to do it, the list goes on. But the affect and damage from that meant my self esteem and confidence were shattered and very low. I couldn't understand why they were such a struggle to me, I couldn't explain when I got into trouble and asked why I couldn't do it and what it was that I found so hard. 


Until one day I saw a video on VI talk, a group I follow for visually impaired people. I saw the name nystagmus and got very curious, I couldn't remember the caption, but it caught my eye and I decided to have a little look and explore. As I watched the video I realised it described me to a T, or at least most of my struggles and things that I could relate to. And for the first time I had a name and an explanation. But what that gave me was so much relief, I felt understood and less alone and for the first time I felt I could explain some of my struggles and get the support from family, friends, colleagues, and others around me. I now had a reason for certain things, like some of the social aspects of nystagmus, other physical aspects of it, and so much more. The first thing I did after I watched that video was share it to everyone I know that could benefit from watching it, and learning from it who I saw on a regular basis. Especially family members who saw me daily.  


With a name and some explanation, I was then able to use that name to explore and do more research, find more videos, articles and anything else I could find on nystagmus, and learn about all the ways it could have an affect on those who have it, so I could see which one of my symptoms, struggles etc were a part of nystagmus and what were not. I could also then look up groups, and find others like me, so I could have a support network of people who understood me. 


With CRS as I mentioned it comes with multiple disabilities and defects, that means lots of different conditions, symptoms and struggles. So it was important for me to know where the causes of each different thing came from. With the knowledge and understanding, it meant that I now had a reason for those struggles, instead of them just being something that were there, and that I had to deal with. Not having a reason made me feel so bad for having those struggles, and often caused frustration and shame. Which I should never have had to feel, or be made to feel that way by others. This also meant that I could now have understanding from the people around me when and where it's needed. 


Generally having a diagnosis for anything can be useful and helpful, in order to make improvements in people's lives, and help them to succeed It means getting the right support and having the right adjustments in place wherever it is needed. Our struggles don't need to prevent us from doing things, or keep us from achieving things. With the right support and adjustments, alongside accessibility, this helps us do things as independently, as possible. Or allows understanding where it is needed. But in order for that to happen, we need to start somewhere, and that means having a name.


With a name and label I was able to say, well this is why I struggle with this, and could then move forward in finding the solution, if there was one. Because with it came the route of the cause, and once you have that, the right adjustments and accessibility can be given to solve the problem. Now the people around me, the ones who need to know can help me in the correct way, without questioning and rolling their eyes. A little understanding goes a very long way. 


So for me it is not about having another name for the sake of having it. It's not about wanting to have another disability on top of so many. It's about understanding why, things are the way they are. Being able to explain and have an explanation for your struggles, and if there is a solutions, (which for me in some cases, there sometimes isn't), then you can do something about it. But if there isn't a solutions or a way round it, at least you have a reason and you can say that 'this is what it is, and this is how it is.' I struggle to do that and I need you to understand and help me, where help is needed, or not expect me to do such and such task. So in answer to answer why so we need labels? And why do we need to be put into boxes? It's not about belonging into a box, it's about finding the right support network and understanding why. 


Just a little side note: these are just my thoughts from my own experiences. Everyone has different experiences, and deals with things differently. No two people with the same condition are exactly the same, we all have different strengths and challenges. I do not speak for everyone dealing with nystagmus, or about having a diagnosis or labels. This is just how I feel and what helps me.  


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