my life my storyGuest Post Inspiration 

My Life, My Story

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Guest Post from Ellie, a blogger at My Life, My Story,  who shares her own personal opinions and experiences of living as a visually impaired woman who identifies as part of the LGBT community and who suffers from a mental health condition.

Hi folks, I’m Ellie, a lion maned, only just pushing 5′ Londoner who just so happens to have an
incurable genetic condition called Occulourcutanious Albinism type 2, OCA2 for short.

I also have the co-morbid conditions, poor depth perception (it’s always fun tripping up or downstairs or practically faceplanting the pavement when there’s a man-hole or other unseen objects just lying in wait, nystagmus (involuntary shaking of the eyes), photophobia (despite the misleading name this is not a medical fear of photos, it’s actually an acute sensitivity to bright and glaring lights), a strabism, a lazy eye for all us laymen out there and astigmatism (the eye is supposed to be the shape of a soccer ball but instead my eyes are shaped like a rugby/American football instead) thus it’s harder to focus on objects as clearly as people without astigmatism.

This condition means my body will never produce a normal amount of melanin. Melanin is the
lifeforce behind the colour of your eyes skin and hair. It also has a great impact on the
development of the retina … a light-sensitive layer of cells at the back of the eye partly responsible for the transfer of visual information from the eye to the brain.

Because I lucked out in the genetic pool my hair is a pale blonde, but hey, the up-side of that is I
don’t have to spend thousands of pounds damaging my hair by bleaching or stripping out other
colours. My skin is a lovely shade of pale mild and my eyes are a light grey-blue.

Although the aesthetic of albinism may have some naturally occurring aspects that others may
wish for, the reality is far from fun. I’ll take the ability to tan over blonde hair any day. My lack of
naturally occurring pigmentation means I have at least a 10% higher chance of getting skin and/or eye melanomas. I don’t relish any day when there’s even a hint of the sun … thankfully they are few and far between in the UK … and I have to take a suncream bath.

The real kicker in the teeth though? My eyesight is awful. I’m registered visually impaired. There’s nothing that can ever be done to correct my vision. To give you some context as to how bad my sight is, I have to use voice over on my phone, I have to magnify the hell out of my computer and iPad screens, god I love the inbuilt accessibility features of modern technology. When standing on one side of a road I can’t even read a pretty big, clear road sign unless I’m so close it looks like I’m making out with the sign.

My sight condition is classed as an invisible disability. To the regular jo walking down the street, I don’t look disabled. This is both a blessing and a curse. There is a lot less awkward small talk or ableist comments wrapped in a pretty bow tie as people ask, in sometimes very strange ways if I need help.

On the other hand, I often fear that people will assume I’m lying when I say I can’t see very well. This is particularly frustrating when I’m travelling around London and need to let train staff know that telling me ‘I need to head over there’ is meaningless to me as I have no idea where ‘over there’ is.

Realistically I should use a white cane whenever I go out. In the past, my stubbornness has
prevented me from utilising this useful mobility aid more than I should. However, due to the
current pandemic, I have never left the house without my trusty cane in hand because I don’t
think the general public would appreciate me unwillingly ignoring the 2-meter social distancing
rules and I don’t think they would take too kindly to me bumping into them just at the same time as I sneeze, just for the record I have hayfever people, not COVID.

At the ripe old age of twenty-nine, I’ve had many experiences both good and bad because of my
sight condition. Don’t get me wrong, I wouldn’t change having a visual impairment because it’s
part of who I am and has shaped my life and allowed me to have many fun experiences and make friends with people I wouldn’t have if I was fully sighted. I would change the way able-bodied people interact with and help those who have any level of visual impairment or any disability for that matter.

I went to mainstream school from nursery to the time I finished my GCSEs. So, from the Age of
three to sixteen I was, to my knowledge, the only visually impaired student in my nursery, primary and secondary school. As a result, I mostly socialised with able-bodied peers.
Going through my formative years in a mainstream school environment was both good and bad.

It taught me that life, society and institutions from schools, hospitals, government etc try their best to help but aren’t equipped to be fully inclusive of the disabled community and that facing
challenges and overcoming new hurdles is what everyone regardless of ability or disability have to do.

However, going through mainstream education as the only VIP student took a toll on my mental
health and my engagement with learning. Having to face a whole host of challenges in accessing
even the most basic of learning resources and lack of support from the staff meant that I had little in the way of truly accessible support. I’m surprised that I managed to pass as many GCSEs as I did because by the end I was so disillusioned with the whole system.

For my sixth form years, I went to s specialist boarding school for kids with visual impairments. To say that I wish I had gone to school a lot sooner would be an understatement. The level of
individualised and person-centred learning resources was incredible. I got my first real taste of
what it’s like to not be singled out because of my sight. I became more engaged in learning again.
Unfortunately, I didn’t do so well in my A-levels because of the rapid onset of what would be the
start of a long term battle with mental illness.

Despite my decline in health and poor results, I was accepted to university to study Contemporary Performance and three years later I passed with a BA 2:1 honours degree. Going to uni is a scary enough time for many students. Going to uni as a disabled student is a whole other level of stress.

Luckily I wasn’t worried about living away from home because I’d done that for the past three
years so doing things like laundry making friends, being away from home, cooking all that was old hat to me.  Having to apply for disabled students financial aid and gaining handheld audio recording devices that would allow me to record lectures instead of having to take notes all whilst having to let my faculty and relevant staff know of my disability?

That was stressful. I think I must have been one of the lucky ones. Contemporary performance isn’t a heavy reading or writing-based courses such as history, English or psychology. When we did have lecture hall based classes, my lecturers where outstanding, always making sure I had access to clear easily readable large print, print outs of the slides, they never expected me to be able to read as much as other students but comment as much as possible on what I had read.

My disability was never the focus unless I decided that it was relevant. It was the experience I wished I’d had when I was at school. I felt like a regular student rather than a disabled student.
After finishing my first degree I was at a bit of a loss at what to do. Thus I found myself applying
for a learning disability nursing degree at a different uni.

Unfortunately, my sight was a massive hindrance. I had three placements in a clinical mental health unit, a residential home and a community nursing and social work team. Despite passing my first two placements and all my exams and essays and class-based work. It was decided that due to my sight I couldn’t continue into the second year because it would be unsafe for me to continue training and thus qualify as a nurse.  This knocked me for six. I was left reeling, upset, my mental health was severely affected, a future, career and vocation were tugged from under my feet because of my disability.

Somehow, like an ungainly cat, only just managing to land on its feet after a scary freefall, I
managed to get my first real job. I was a support worker in an independent living home for adults with learning disabilities and mental health issues. I wasn’t a nurse but this was the next best thing.

Paperwork was a bit of a bitch and dispensing meds was a real pain in the ass. Using simple yet
effective assistive devices such as magnifiers and my phone’s camera easily made those tasks
much more manageable.

Other than that there were no barriers whatsoever to me doing the best job that I could and for the time that I was there I settled in well, I got on well with both residents and colleagues and again my sight wasn’t a thing unless I decided I wanted it to be. After a year  and a half, the stress of the environment and the long hours started having a negative effect on my mental health so it was time for me to leave for the sake of my own well-being.

When I decided to move on I moved to a school. I was a lunch lady and part-time teaching
assistant in a specialist school for kids with learning disabilities. I loved the work, the kids, even
more so than when I was a support worker. I could see myself becoming a full-time TA at this
school and staying there long term.

I applied for a full-time position five times over my two-year stint at the school. Each time I was
told I hadn’t gotten the job because of lack of experience. The first couple of times I accepted this
as part and parcel of the process because I hadn’t been there long and I didn’t have that much
experience. After the fourth and fifth time? That was when I realised that my sight was once again standing in the way of me getting full-time work.

This was never actually the reason given for me being declined full-time work. However when
you’ve been dedicated to a particular workplace and done as much as possible to educate
yourself, spending money and investing time to earn qualifications relevant to the job whilst taking any opportunity to gain on the job experience? You soon grasp that indirect discrimination is a major part of the brick wall you’re banging your head against.

It was with a heavy heart that I shut the door on that chapter of my working life. However, all the kids and colleagues I worked with will have a special place in my heart. My next working venture was in a mainstream nursery. In terms of my working life? Those six months really did highlight how much sight impairments have a major role to play in other people’s perceptions of your capabilities to carry out a job.

Now, my logical brain isn’t complaining about the fact that child safeguarding is much more prominent and stringent compared to what it used to be. But the emotional and mental illness side of me? Well, it really didn’t get that logical message. I spent three months as an early years practitioner and the last three months as a nursery assistant. As a nursery assistant, I was basically a glorified, cleaner, restocker etc.

Once again my sight had pulled the wool over my eyes so to speak. The following year was spent
as a housekeeper in a nursing home for the elderly. That, was mundane work that I was doing
because I wanted to continue earning money. My sight wasn’t a major concern. There were times when my supervisor pointed out things that needed an extra going over because I’d missed it but 99% of the time my sight was a footnote barely worth examining in my working day.

After a year of hard work and another severe downturn in my mental health, I decided that yet
again my overall well-being was more important than a job that I wasn’t passionate about and
saw no career progression in.

My last shift at the care home was on August 31st 2019. I needed some time and space to get my
mental health back in order. So, the next three months saw me relaxing, whilst applying for a
couple of possible volunteer positions.

In September I applied to volunteer at the RNIB’s resource centre in the charities London based
headquarters. The RNIB is one of the UK’s leading charities for the blind and somewhere I never
thought I’d end up volunteering or potentially working, despite having a visual impairment since
birth.

I started volunteering in November of 2019. In the three months that I was there before the
pandemic and social distancing and isolation came into play in the UK, I settled in quicker than I had done in any other workspace. For the first time in my working life, I felt like I’d found home.

The working environment and colleagues make this role the happiest, most relaxed work
experience I’ve ever had. Since working at the RNIB I’ve learned so much and become so much
more passionate about equality. I get excited to wake up and go into work. I feel supported even
when there is a busy chaotic day ahead of us. I feel like a valued member of a knowledgeable,
caring, funny team.

Working in such a positive environment has really taught me that life is tough. We don’t always
have to have a plan, we won’t always see or expect what’s around the corner. But learning to
adapt because of stressful situations, whether that be in the form of being in a rut at work or
dealing with inaccessibility or well-meaning yet unhelpful people who treat you differently because of your disability, is showing the strength of your character and ability to metaphorically put one foot in front of the other.

Thank you so much for taking the time to read this post and I hope you enjoyed.
If you’d like to check out my blog I post my own experiences and opinions as someone who is
part of the LGBTQ+ and disability community and thoughts and experiences of coping with a
mental illness, you can find me here.
You can also follow me on twitter: @EllieAOfficial
And Facebook: My life My story

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