The aim of this post is not to garner sympathy at all. This is just a rambling post about the impact a visual impairment can have on one’s mental health, specifically my own as I can never begin to imagine what other people go through or their thought processes regarding their own sight and personal journey.
This is in no way a post that describes every single experience that every single person with a visual impairment has. It’s simply a portrayal of one way in which one individual has been shaped. My life is in no way meaningless just because of my own journey or experiences. It does not mean I don’t aim to have a fulfilling, positive and meaningful life. If anything the life experiences that I’ve had is one of the main reasons why I want to work with people and make a change in the lives of others who may be travelling the same path as myself
I was born with Oculocutanious Albinism, a stable condition that means I am legally blind. Do I consider myself to be ‘blind’? No, as I have a lot of useful vision compared to a lot of people who I know in the visually impaired community. However, the more important question is do I even consider myself fully visually impaired? … No.
I try and blag my way through life as much as possible because I don’t want to seem vulnerable or weak in any way. It’s almost like I don’t want to accept that I need help. I don’t want people thinking I can’t do something because of my sight.
However, doing so puts me in a worse situation than if I held my hands up fully to the fact that there are times that I actually need a little extra support.
To give an example, I don’t use a long cane nearly as much as I should do. I don’t want to look ‘blinder’ than I think I am. I also don’t think I need a mobility aid as much as someone who has less sight than I do so I feel like a bit of a fraud whenever I use it.
Generally speaking, my dear sweet loving family are extremely supportive and want the best for me and want me to access help where appropriate. However, my long cane has always been a bit of a funny situation. My parents have always discouraged me to use my cane around where I live. On numerous occasions, I have been told in no uncertain terms that my cane would put less trust in me because it would be a physical sign of my visual impairment primarily in terms of the previous types of jobs that I’ve had or when applying for jobs. I have also struggled a lot when it comes to disclosing my visual impairment when applying for a job and I have always been advised not to because it might harm my ability to be shortlisted for an interview. Of course, when mummy dearest gives you advice you tend to want to listen because … well, she’s mum and you always tend to believe that parents have more life experience and know what’s what.
Now, I’m not saying that my parents are bad people. Of course their not, quite the opposite in fact. However, I think it can be very difficult for parents of children with any form of disability, especially an invisible disability that is both severe but not severe at the same time. There is no manual on how to best deal with any and all situations that can and do crop up.
Having the condition that I have means you live in a bit of a grey scale world. You don’t fit into the sighted world but, this is just how I feel, you don’t fully fit into the blind world either. It’s almost like you’re a bit of a nomad just stumbling from point to point. You have enough sight to be able to pass as sighted but you need certain aids to help but some aids are specifically designed for people with little to no sight that you don’t feel you actually need or want them.
This perpetual cycle of thinking you’re more sighted than you actually are can be very dangerous, physically, mentally and emotionally. Due to the fact that I don’t use a cane people don’t know that my sight isn’t good enough to move out of the way and can be a rather stupid risk to take when in busy urban areas where there are lots of bikes, cars, buses etc. Emotionally you never feel you fit into one specific place and don’t know how to describe what you can and can’t see because there isn’t specific vocabulary that isn’t medical jargon.
Mentally it can almost be a daily battle to either explain to people that yes you are disabled and no you’re not faking it, decided if it’s the right decision to declare you’re disability for job applications, fighting for the correct support which can sometimes be hard because not even you know the wide variety of support that is out there (because it would be way to easy to make help fully accessible and fully at the forefront of peoples awareness) and how it can help, feeling like you can’t do jobs that you want because of your disability and feeling like you’re stuck in a place where you’ll never get a good career that’ll fulfil you because people don’t want the hasstle of a visually impaired employee or don’t think you are capable of performing tasks simply based upon your disability.
Emotionally it’s tiring feeling stuck in one place because out of pure and utter lazy habit it’s become a safe little bubble where you can run and hide perpetuating the cycle of self-doubt, never trying new things, never pushing yourself because you constantly tell yourself that you’ll never amount to much in a sighted world. You feel trapped by your environment and the little bubble that you don’t feel safe to leave.
I am at a crossroads in my life at the moment. I am applying for Universal Credit (part of the UK’s benefits system) which I must say has a very regimented way of doing things and seemingly has very little understanding or regard for people with a wide variety of disabilities and that being disabled is not just a black or white situation. However, I digress. Until I am receiving money I don’t feel like I am able to move forward because I don’t have the financial aid to fund things like invaluable voluntary work that could be very useful to me gaining a job that I could be good at and that I’d actually want to do. Volunteering would also mean having to travel further afield than St Albans, which luckily is so close to London that I’m quite comfortable travelling to London seeing as I’ve done it so many times. However, the fact that my whole working life so far has revolved around St. Albans the prospect of travelling somewhere different, meeting a wider variety of people and so on is rather daunting and something that my mental attitude has thrown a bit of a hissy fit about recently.
I know I have to travel outside my comfort zone or I’ll never grow as a person but my mind and emotions are like, ‘fuck it Ellie do you really want to put yourself out there and just get turned down immediately? coz that’s just a very real possibility you know?’.
So the long and the short of it is. That is where I am in my life so far. One part of me wants to run and hide from everything and another little jiminy cricket part of me is screaming at me to jump into the deep end and flail about until I learn how to tread water and look like a swan, kicking my feet but cool, calm and relaxed on the surface.
Life isn’t easy when you’ve got an invisible disability. We all have our own journeys, emotions, mentality and outward influencers that we have to deal with and it’s ok to feel lost, angry and upset. There is no timeframe or specific way to deal with these feelings and issues. However, if you are someone you know is feeling like this then just know that it’s ok and you’re not the only one who feels these feels.