By Grace Hill
I remember it clear as a bell. The date was 16 March 2022. The time was around 3pm. I was on my bed going about a normal day with KISS FM on. Or at least that was what I thought until one particular artist came on. That might not sound like a big thing to most people… often when we have music on it is just to keep us entertained while we do something else like cleaning our rooms or studying. And that day I was no different. But when this particular artist came on KISS, I stopped and paid attention. Who was this and why did I understand what they were saying in their lyrics more and more every time I heard them? Curious, I looked into their story and found that they had devoted most of their life to their passion for the creative arts. This was something I related to massively having been passionate about KISS since the age of 5, and especially since I was getting very frustrated with myself for having no skill or interest in other areas like sport.
Since hearing that artist on KISS, a lot has happened. I have taken up writing to help me express what is in my head, as opposed to it just being something I enjoy, like it was when I was younger. I keep myself physically active by dancing (badly!) and I have aspirations to take this more seriously in the future. I guess the biggest change is that I now have a solid support network from across different generations, including friends of a similar age range to me who accept, maybe even like, all of my differences. From my anxiety about getting ready to go out, to my fits of dancing and smiling for no reason. But how have I reached this point? If my past self was sat beside me now, what would I tell her? The truth is I have learnt a lot over this last year. It has been, as the title of this newsletter says, a journey of acceptance and growth. Here are some pieces of advice I would give to my past self if I was helping her on the same journey again.
1) Beauty and physical things won’t make you happy forever or change who you are.
When my mental health was at its worst during the pandemic I had the tools for unfiltered access to other young people I knew who were getting lovely things and living spontaneous, independent lives. I told myself that the reason I wasn’t living like this was because of bad things I had done. I wanted the best of everything because I believed that having it would make me similar to these other people. I also wanted to be tall and thin because I thought that was what pretty was. I spent time emailing local sport organisations to see what accessible opportunities they could offer, knowing full well that I have never even enjoyed sport. During this time I was also recruiting for a new support worker, and looking back now I see that some of what I provided as part of that process was not about the real me but the person I wished I was. Thankfully I have a new support worker now, she has met me as I truly am and is very loving and accepting of it. I got all of the physical things I wanted during that time, and only one of them has actually contributed towards my true happiness. I still want to be cool and pretty sometimes but I no longer let that get in the way of my passions and being with the people I love. I am who I am and I can only change things with my actions, not the brand of bracelet I have on my wrist.
2) It’s ok not to want to have a vision impairment (or any other disability for that matter).
You’ve probably seen the headlines… the deaf actress who won ‘Strictly Come Dancing’, or more recently the young blind lady on the Channel 4 show ‘The Piano.’ I applaud both of these stories, relating somewhat to the second, and am a massive advocate of celebrating others’ achievements. However, for me personally, being blind is not something I celebrate and I choose not to have it as a big contributing factor in my story. I know it is there, it has brought me great opportunities like contributing to this newsletter and using my experiences and values to support others, but I have also experienced anxiety about stereotypes, the future, and support methods that don’t work with other, bigger aspects of who I am. Because of both of these extremes, I have worried that I am either playing up to my anxiety image of blindness, or that I am not blind enough because I don’t love everything that being blind has given me. Having a dog, for example, is lovely but hasn’t worked so well for me because I prefer to be around people, use more predictable aids like a cane, and I don’t have the passion to fit it into the life I want for myself. The truth is I am not grateful or proud to be blind, nor do I want to be. It is just there in the background of my life, it will always be there unless I become part of a massive scientific breakthrough, so the best I can do is accept it, ride out the resentment and frustration, and enjoy life when I do get to be around what truly makes me who I am.
3) It’s not just because of your body.
Following on from my last point, I would tell my past self that the way I am as a person is not just because I have so-called disabilities, they only play a part in how I think and act. For example, if I tell someone I like the rain, they might think this is because I like the texture and sound of it. This is true, but I also find being in and listening to rain liberating, as though it is washing my disabilities and all of my aids away as I imagine myself achieving my dream of flying solo to Canada and dancing in a city in the early hours of the morning. I would also tell my past self that age is little more than a number, and that being vulnerable is not a sign of regression. Trying to be who you are around others can be very scary, but it can also give you confidence as you realise who you can trust and who accepts, maybe even likes, the little traits that make you who you are. I am working on this with little steps like openly playing the music I like even if it isn’t necessarily ‘age appropriate’, and bigger steps like telling someone I trust what I need to help with my anxieties. Whether you have disabilities or not, remember you are unique, just like everyone else, and the people who accept and like you for that are the ones to keep closest in your life.
4) Being included doesn’t always mean doing the same thing as everyone else around you.
I have known from a very young age that my body works differently to others, and because of that I was always determined not to be different in other ways. The thought of being the odd one out, or of someone achieving even the most basic skill before I did, terrified me, so much so that I would put myself in situations that I now know I didn’t need to. Last year my family were watching a show on TV that I haven’t liked for years but still I kept watching it anyway. However on this particular night I sat listening to my favourite playlist while my family watched the TV. The audio description was on but I wasn’t engaging with it. My mum simply sat beside me and held my hand as I listened to my music. In that moment I learnt the true meaning of being included. You don’t have to speak, you don’t have to watch the TV, it is simply about being with the people you love and trust, feeling that they are there by your side. A few weeks later my family watched the same show and my mum told me that there was no audio description. But the feeling wasn’t isolating, it was freedom. Simply being left to dream without the audio description breaking through and bringing me back to reality. So I would also add that whilst campaigns and measures for everyone to be included are great, it is not exclusion if the person on the outside doesn’t want to participate or wants to do it in a different way. It has been a long time coming, but I now understand that real inclusion is just being with people who love and accept you for every aspect of who you are.
5) It is ok to be yourself in any given situation, especially around people who know you and people who you trust.
If I could, I would have music on all the time. I very rarely go anywhere, even around the house, without my AirPods, even if I don’t have them in. And yes, rude as this might seem, this does include the dinner table. I have been reassured that this is perfectly normal, even ‘fashionable’, behaviour for younger generations, but I still worry about looking different, special, or like a stereotype of disability keeping itself calm at the table. I don’t have the mental energy to field the potential question ‘Why does she wear a headset all the time?’ or comments like ‘Take your headset off.’ This anxiety came to a head a little last Christmas… would I look obvious or rude, clearly different to other members of my family, if I was listening to music when everyone else was having fun? Then on Christmas morning I asked myself, if we didn’t have anyone coming over, how would I behave? And the answer was simple, I would stay with my family, listen to my music, and join in the fun more quietly when the time was right or if I was asked. Besides, we only had one person coming over, and that person was my nan who has known me all my life. If I couldn’t be myself in front of her then there really was something wrong. So as my nan walked in I sat on the sofa with my AirPods in like I would on any other day. I did take them out to get dinner and play a game with my family, and my nan didn’t even notice that I was listening to music for most of the day. Making the decision to be openly myself in front of others meant I had a much easier Christmas than I had thought I would. I am still very socially conscious but my confidence is growing, for example, I will continue to listen to my music at the table if we are not having a social family meal. While this might appear rude to some people, it is a big step forward for me because it shows that I feel comfortable not changing who I am, despite the risk of possible questions and judgement, unless the situation calls.
6) Tell someone you trust if you need to look after yourself in a difficult situation.
Difficult situations can be good or bad, from an exam to a social event, but whatever the situation is, you should never underestimate how intense you might find it, and how strong you are for even being there. Because of this you should not feel guilty if you need to look after yourself during the difficult situation, whether that is by physically stepping away or staying and doing something to keep yourself ok. If you can, find someone you trust, be honest and tell them you need a break, and if you feel comfortable you can tell them why if they ask. I personally can find spending too long in groups and watching TV intense and tiring, so I try to release any stress from these activities by dancing. And because my mum is the person I trust the most, I feel comfortable to tell her what I am doing and why: ‘I am just going for a dance because I am tired from sitting watching that movie.’ She is always very supportive of this and happy to see me when I return to the group. I would also add that you don’t have to speak to tell someone that you need a break. I find it easier to write, for example in a WhatsApp message, because it is more likely to be private. Whatever works for you is ok, just keep trying until you find it and try not to feel guilty if you slip or fall.
7) It’s ok to have off times, limits and anxieties.
Because I have been doing so well over this last year, I want to keep pushing myself to achieve things I know I am capable of. But that does not mean ignoring my limits or going at a pace set by where I think I should be. Over the last few months I have been trying to work towards the goal of using my stairway with only one hand on the bannister and holding the other to my hip so I can feel the rotation as I walk down, like a dance move. This will mean that I rely less on the objects around me and gain a sense of normality, independence and pride. I have mastered the upward climb perfectly but still find the downward climb difficult at times, particularly in the daytime because of the changes in the environment around me. So when I am struggling or if I need to move quicker, I will still reach out to the wall beside me as opposed to relying on the movement of my hip. And even though I get frustrated with myself in the moment, I tell myself that it is ok, nobody has set this goal apart from myself, and if I don’t overthink it, maybe it will work next time. We are all doing as well as we can in our own time, and we can all get to where we want to be. All we can do is try our best, remember we are not perfect, and not feel guilty if things don’t work out like we want them to on the first try.
I hope these pieces of advice will help someone, somewhere, know that they are not alone on their journey. Let me be clear that this year with KISS FM and everything I have learnt and achieved has not fixed me, I can still be insecure, anxious, hung up, irrationally obsessive, and yes I am still just plain different and weird. But I now know that I can flip these traits and use them to get to where I want to be. They make me passionate, determined and creative, and these are qualities that I like about myself. So on the days when you feel like giving up, look at how far you have come, remember that you are still moving even if you think you have stopped, and ask yourself, if your past self was on this journey by your side, what would you tell them? Whatever it is, I wish you all the best on your journey, just know that you’ve got this and you’re not alone, even if it sometimes feels like you are.