Pain, frustration and positivity. It’s ok to have dark days with a disability

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.

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Working with a disability … find your path

As a disabled person of working age trying to find work that fits my personality, likes and passions can be difficult.

I am an individual with a ‘severe visual impairment’ that loves working with people. I am not someone that could sit down in a nine to five job behind a computer all day or in any generalised office job. For some people with a visual impairment that may be fine but that’s based more on their personalities and work preferences rather than being connected to their visual impairment.

Over the past three years I have worked in a school/nursery environment. I loved working with children as no two days were the same. A dynamic environment is an exciting one. That’s what I want from my work life. However, over the past three years one thing has stopped me from progressing.

My sight has lead me two leave two jobs in an SEN school for children with Learning Disabilities and a mainstream nursery. The reason behind my departure from both places is my sight. Safeguarding is such a hot topic in this day and age. The specific issues that I faces was potentially giving children the wrong food, personal care (changing nappies) and being able to keep eyes on children in the playground.

These are all valid points and logically I can understand why measures had to be taken. However, emotionally I’m frustrated. Never did I give children the wrong food, yes I may have looked slightly closer when changing children but I never harmed them and my sight had no major impact on my ability to change a child. In terms of supporting children in the playground that point is the most understandable of all. My distance vision isn’t great and for that reason I can understand that I may not be able to see something happening as quickly as other members of staff.

As a result of my vision I had to take a demotion in my last job which lead to my mental health suffering. I had to do menial and routine tasks such as cleaning and general tidying. This is an important part of keeping a nursery running but it wasn’t what I went there to do. I wanted to work with the children directly and the job that I ended up doing meant I had very limited interactions with the children.

Now I want to state that I am in no way trying to undermine the nursery that I worked for at all and for privacy reasons I won’t name them. It is simply due to my sight in relation to current safeguarding legislations that I found myself in the situation that I did.

However, I won’t lie. For a while I did blame the management at the nursery and became very resentful, jealous of others and felt my general mental health slipping. I simply couldn’t do what I wanted and I didn’t want to accept the facts exactly for what they were at the time.

The simple fact of the matter is that if you have a disability of any sort, doing a caring role such as working directly with children in a school or nursery environment your disability will inevitably throw up issues that will either be easy or difficult to overcome.

Unfortunately we live in such an age where disability does affect societies views of your capabilities to perform a caring job such as an early years practitioner or teaching assistant or nurse. We live in a society that is geared for able bodied people and working life is set to accommodate able bodied people.

From the standpoint of someone with a visual impairment and being a caring individual who wants to work with people I think there is still a stigma that, as a community, we can’t possibly look after or be in charge of other people because we find it harder to take care of ourselves independently. That is simply not the case at all.

I agree that there may be tasks that are more challenging but that doesn’t mean we can’t find ways of working within a team environment to work around that so that we can work within our capabilities and work with our own strengths.

Just because we have a disability does not make us incapable or being a useful part of society that contributes towards making society and the economy a better place.

One positive thing that has come out of this for me is that I am taking some time out for myself I am focusing on improving my violin skills and going to teakwando anywhere between 3 and 6 times a week. I also have a new prospective on career options. I know I want to work with people still and I want to help people.

As I have struggled with mental health issues in the past I want to focus my attentions on one day becoming a counsellor and maybe investigating child services or disability services. Having both a disability and mental health issues myself and having a liking for working with children gives me options and becoming a counsellor would give me more career progression options.

It’s all about knowing what you want to do and finding a way to get there. There’s always going to be bumps along the way. Life is never straight forward and likes to throw us curve balls. It’s about accepting that and taking every opportunity to learn something about yourself from the situation that you find yourself in and taking that forward to improve and progress yourself.

I have accepted that working in the nursing or school background may not be an ideal option for me but I know that I want to help people so knowing that I have to look into and investigate other options where my eyesight won’t be such a major concern or hurdle.

Be true to yourself and never forget that when one path comes to an end you have the opportunity to create a new one that is unique to you and will get you the furthest in life.

Labour voter through and through

Hi everyone I hope you’ve had a good week and weekend so far. Today’s post is going to be cut from a slightly different ilk to my usual topics. In light of the recent general election and the outcome of a hung parliament and the fuckery that that places the UK in I thought I’d write my own very personal opinions on the subject matter. I also have to say that I’m not completely and utterly well informed when it comes to politics, so this particular viewpoint is just an initial gut reaction of mine.

As I have mentioned before, I’m 26 and therefore still considered a young voter. Despite the increase in numbers of young voters in this year’s general election, which took place on Thursday 8th of June the number could and should be higher.

I believe that a lot of people, not just young voters, decide not to vote because they don’t know who to trust and feel that their needs won’t be met by any governing party. However, if people don’t vote the party that will be able to make the changes and help them the most won’t be able to make any difference at all. All in all, it’s a bit of a catch 22 situation.

I know people say don’t divulge who you voted for as it’ll only cause arguments and disagreements. However, in the knowledge that no-one’s views or opinions could change my mind, I will freely admit that I voted for the Labour party. Everyone has the right to vote for who they want to and have their opinions about the political parties.

The main reason why I voted Labour this time round is that I felt that their manifesto was the best. I like what they stand for. Taxing more to fund social pillars such as the NHS, Schools, The police and fire services, etc., to me that is an excellent way of moving forward, especially when combined with increasing the tax of those with increased wage packets.

‘For the many, not the few’. Why should money and power allow you to have a more privileged life while those who were already struggling financially be abused and kicked in the teeth for extra measure?

I understand that a lot of people would possibly say that we simply don’t have the money to do everything that the Labour party wanted to do in their manifesto. Yes, I accept and wholeheartedly agree with that. However, my argument to that is that it’s not about achieving everything in the manifesto but sticking to their guns and trying their damnedest to do the best with the shitty situation that the finances are in.

Whichever way you look at it the government has money flowing out of every orifice which leads to wasted money which could be better spent else where. It takes a party to know what they want to spend it on and redirect that money to the places it should be going.

Someone said to me today that the NHS, which was introduced by a Labour government, is far more likely to treat foreigners first and treat British citizens like second class people. I want to remind anyone that holds this view that Jeremy Corbyn was always and still is a Brexitier it was the Lib Dem Leader that wanted to consider another referendum on Brexit if he won.

When she said this, I was rather taken aback. If it weren’t for overseas nurses and doctors, the NHS would have completely disintegrated years ago and have gone private, and she would have had to pay out a lot of money for treatment for her family, for which they’ve had a lot from what I can tell.

In addition to this, I’m rather outraged at the belief that it’s only overseas individuals that come over and scam our benefits and NHS system. I would reckon that at least 50% of people who simply scam and cheat the benefits system are UK nationals who are too lazy to work or too high and mighty to accept certain jobs because they don’t want to get their hands dirty and think things should be handed to them on a silver platter.

Anyone who still believes in Theresa May after all the U-turns and indecisions she made and sheer horrific nonchalant and stupid decision she made not to turn up to the election debates around me. Now I’m not saying that people should vote one way or the other because ‘certain cuts are necessary’. As I have said before whichever party finally ends up leading the nation needs to seriously buck up their idea’s in regards to the UK Books.

However, I think there are ways of going about it without completely and utterly screwing over the poorest or most vulnerable groups in today’s society. I know some people will think that we need to be more vigilant or more conservative in our thinking but the truth of the matter is that our system is not cut out to support people to achieve social mobility and stability. With a Conservative government, everyone apart from the rich is thrown to the dogs. As an LGBT, disabled woman who works in a school setting, I can’t ever see myself voting for a conservative government.

I know these views may seem a little extreme or over the top at times, but I’m merely trying to express my personal opinions in a way that will kind of make sense. Whether you agree or disagree that’s fine, but all I ask is that you don’t try and convert me to a different way of thinking. I will always vote for the political party that I think will best serve this country and ALL its citizens. I can’t and won’t be swayed by any other opinion other than the manifesto and leadership of a particular party. That’s not to say that I will always agree with all the points or views made by a party. For example, I don’t agree with Labour’s view on decreasing armed forces in light of the recent terror attacks in Manchester and London. Quite the opposite I would feel much safer with an increase as enlightened by Theresa May and the Conservatives but that does not mean I can back and agree with their views and policies in whole.

Until next time my lovlies, I shall love and leave you :).

What would I say to a class of kids with Visual impairments?

Hi everyone I hope you’ve had a good weekend despite the rain that has decided to descend upon us here in England.

Today’s post will be ever so slightly different, regarding style. I’m going to be writing a post as if I were writing a speech to be given to young people who are visually impaired or who have any form of disability. I would want to empower people without sounding too condescending.

This idea comes off the back of my sixth form days that I spent at a specialist school for people with visual impairments. Every so often we would have people come in to talk about what they were doing in terms of their work. In my memory the majority of people who came in to speak to us worked in office work or in IT.

I’m a firm believer that if an individual knows their own abilities and limitations and fully utalizes all possible help they can achieve great things and don’t have to fall the steryotyplical jobs or unemployment. So without further ado lets go.

Hello everyone my name is Ellie I’m 26 years old and I work in an SEN school for children aged 3 – 19 with moderated to profound and multiple learning disabilities.

When I was younger I didn’t have a distinct idea of what I wanted to do or be when I grew up. I always fancied myself as a famous personality however, I think a lot of little girls of about 10 or 11 are drawn to the luxurious, glitz and glamour that fame can bring. The fantasy of being remembered and known by everyone, not feeling like an invisible face in the crowed is also an exciting part of that world.

As I grew older my mentality started to change. I thought about being a nurse at one point in my life. Nevertheless, I went to uni, studied contemporary performance, applied myself and came out with a good solid 2.1.

During my time at uni I volunteered at a theatre company for adults with learning disabilities. Through that contact I sarted doing part time support work for two of the young ladies who attended the theatre company.

Up until that point in my life I had no real idea of where my life was headed, what I wanted to do after uni or how to go about finding interesting work. It was this one oppitunity that gave me that all inportant light bulb moment.

For the first time in my life I had an idea as to what sort of work I would be interested in doing. I wanted to work with people. More specifically I wanted to work with people with a disability. I found the work interesting, diverse, challenging and never boring. I’m not someone who could have a 9 -5 office job. It wouldn’t take that long before you would find a shrivled, drivaling puddle version of me loytering in the corner somewhere. But that’s just me. We are all differnt and find different things fun and attractive.

Once I had finished my degree I was once again at a bit of a loss of what to do and where to head. My degree subject had not given me any knowledge or training in the type of work that I thought I could possibly persue. So what the hell was I going to do next?

In the September of 2014 I started a degree in Learning disability nursing. This, I thought would set me out for a good, long and prosperous career. Due to my lack of proper support. lack of understanding from the university, naievaty and lack of technology to help aid me I was not allowed to continue the course.

This was a devistating turn of events and one that I hadn’t really factored into my thinking. During my time at school and my time doing my first degree I had become accustomed to having my needs met, having help and not really having to think to much about the impact of my sight.

This experiance, therefore, taught me a great deal. Understand how you’re sight impacts your learning and work style, accept that you do need help and don’t be afraid to ask for it. Utalize every possible aid that you have access to, to help you improve your chances. Be prepared for set backs and lack of understanding and pre concieved judgments concerning your ability to perform certain tasks.

Unfortunatly we still live in a world where employers and educators in mainstream settings don’t have the right knowledge, stratagies and techniques to help you. You have to be the one to prove what you are capable of. Don’t shy away from what you want and need. Accept, embrace and utalize every possible stratagy to help break down the barriers that you may face.

Even if you don’t know what you want to do now accept that there will be oppitunities that arise in your future that you can’t imagine arising at this point in your life. When they do arise don’t shy away from them. Grab hold of them and figure out how to persue what you want to do. No one can tell you what you can and can’t do until you’ve tried it. Only after all stratagies have been exhausted can you truely know if someting is working for you or not.

We all have to accept that there will be certain things that we may never be able to do, driving for instance, being an airline pilot, it is rather unlickly that we will ever be able to fight for queen and country. However, you are a human being full of possibilities. You are worth every once of what you give the world.

You may have an excellent eye for maths or the sciences, something I would give an arm and a leg to be good at. You may be able to chanel the likes of Dickens or Shakespere. You may be the next Beyonce, Michael Jackson or Bill Gates. You may feel strongly about activism and change the world. Who knows, the possibilities are endless.

Knowing or discovering who you are, your passions and you’re ideal work enviroment is the most important factor for your future. Don’t settle for second best just because someone else says so. Don’t caunt yourself out just because you have a visual impairment. You deserve the right to equal access to the work that you want and need to do.

You are the person who dictates your future. In the course of your life you will come across bumps and junctions in the road. You may feel lost and unsure of how to find your way again and you know what? That’s normal. In fact I would go as far to say it would be rather strange if you didn’t face any hiccups in life.

The way we deal with those situations, how we decide to move forward, the help and advice we seek and the ability to reflect and create action plans to move forward are what make you a rounded person. Knowing what works for you in different situations will help you to present the best version of you possible.

As I stated earlier I work in a school. Some of you may be thinking how are you able to do that? Well I have developed a couple of techniques that are so stupidly simple that it’s almost rediculous. For example when I’m supporting the children on the playground I walk around more often to be able to see where specific children are. This is because my long distance is atroushous so I combat that easily enough.

Some children may like tipping chairs over or pulling hair. Due to the fact that I know these sorts of behaviour are likly to present themselves in oppotune moments I have learnt that it’s always best practice to be constantly vidual. However, this is due, in part because I know the student’s and how to help manage behaviour rather than any techniques I implement due to my visual impairment.

I love my job. Working with kids is what I want to do and I fully intend to make a career out of it. I myself want to go back to uni to study Occupational Therapy and hopefully specialize in pediatric work. From my own past expriences I have come to realize that I have to take the leading step in how I work and learn best. I have to work with others to come to the best possible solution to help me achieve the best possible outcome and move forward.

Basically what I am trying to say is that it’s important to know what you are required to do in your job or education setting, become familiar with the type of activities that you will be facing and carrying out on a daily basis and create your own techniques for coping and ask your employer or educator for appropriate accomadations as they are legally required to do so.

Don’t let society or yourself hold you back. You are not your visual impairment. You are an individual who wants their needs to be met and succeed in life. You just happen to have different challenges that you have to face so be the best version of you possible by going and getting what you deserve.
I hope you enjoyed this post. I decided to write this one because I don’t believe that young people with a disability are given enough empowerment from a young age. By accepting ourselves and the help and techniques that we can and should be using, we are able to make a positive contribution to society. We should never be made to feel like we are different and unable to access learning or work based on disability.

Some of this initative falls into our own hands. We cannot expect to be handed the world on a silver platter, nor can we become annoyed or frustrated if we simply and easily fall into steryotypes. Society won’t change if we don’t make a change ourselves. We have to work with others to teach and learn about how each individual works best. We have to prove that we are capable of achieveing the things we strive for and that we don’t want or have to conform to societies views on disability. We are individual people who deserve to be treated as just that, individual humans with rights.

Until next week my lovlies I hope you have a fabulous weekend (especially seeing as it’s a bank holiday, hurrah for an extra day to have a lie in). Lets hope the rain abaits a bit for the next three days. See you next Friday :).