This blog was written to support a talk delivered by Elin Williams about her transition journey through school, university and employment. The talk was part of the opening presentations for the Lost in Transitions conference held by the Thomas Pocklington Trust and the University of Birmingham’s VICTAR (Vision Impairment Centre for Teaching and Research) from the 22nd to the 25th of June 2021.
My name is Elin. I’m 26 years-old and have been part of the LOOK team since 2018.
My visual impairment was diagnosed in 2001 after lots of hospital visits and conflicting information for my parents from different doctors. I was given a working diagnosis of Lebers Congenital Amaurosis (LCA) and Nystagmus, which came with a prognosis that my vision might deteriorate over time.
For most of my childhood I could see enough to read large print, distinguish colours and get around safely (mostly) though I had no depth perception and was night blind. Growing up, my vision was deteriorating so slowly that I didn’t really notice until I was 14, when I experienced a sudden big dip in vision leaving me with mostly just light perception. My sight has been stable since then and I’ve been describing myself as almost totally blind for more than 10 years.
Getting a diagnosis is key
Getting that diagnosis was key in empowering my parents to advocate for the right support for me at school. Up until then my school had been reluctant to implement specialist support for me because I had enough residual vision to get by. With the help of an Educational Advocate, I was given a 1:1 TA, QTVI support and Braille and touch-typing lessons to help me access my learning. I was reading large print using a laptop with colour contrast, and learning Braille and touch typing in preparation for the move to secondary school.
Transitioning to secondary school
Preparations for my transition to secondary started as early as Year 4. As far as I was aware, the most important thing was for me to be fluent in touch typing and Braille by the end of Year 6, so that I could move to using these skills full time in secondary. It was presented to me as the easier, more efficient way of coping with the volume of work at secondary school.
Luckily my TA and QTVI moved with me to secondary, which helped provide some consistency through the transition. During the summer holidays before starting Year 7 I had one or two sessions familiarising myself with the school layout. Secondary school implemented a couple of things to make things easier for me including painting steps and railings with high vis paint, putting me in a form room which was the first classroom on the corridor, and ensuring I had some classmates that were peers from primary. Honestly, I don’t think I worried too much about this transition at the time. I was lucky enough that both my primary and secondary schools were 5 minutes’ walk from my house and that I was moving up to Year 7 with friends. Once I arrived in Year 7, the main thing I struggled with was friendships as groups and relationships grew and changed. I wasn’t ever bullied at school, but for the first two years I wasn’t really included so stayed on the periphery – often spending break-times and lunchtimes alone.
I didn’t establish a handful of good friends until Year 9, which was really lucky because it was during this year that I lost a significant amount of vision quickly, so I became reliant on my friends for getting around school. I’d had a new TA the year before who I got on really well with and who was learning Braille on the job. Adjusting to the sudden loss of vision didn’t affect me very much academically because I hadn’t been using functional vision to access my learning for a couple of years. The biggest change was to my mobility and independence.
Preparing for Sixth Form
At this point the focus of annual reviews and meetings moved towards planning for the next transitional step, which was moving to sixth form. Because my secondary didn’t have a sixth form attached, the usual step would have meant moving to a local sixth form college. This was a big worry because it meant moving to a new setting, in a different town, with lots more people and all new teachers. There was also discussion at the time that it would be unlikely for my TA to move up to sixth form with me, and there was some confusion whether I’d be able to take my equipment with me or if it would need to be re-bought by the college. All these questions and uncertainty were a source of great anxiety.
The Longitudinal Study
I first became involved with the longitudinal study during my GCSEs. At that point all it involved was completing questionnaires and interviews with a researcher once or twice a year. I was happy to be involved in the study at that time because it made me feel less alone knowing that there must be other VI young people out there somewhere. I was the only young VI person in my school, in my town, and as far as I knew – in the world! It wasn’t until I started attending activity weeks and vacation schemes by the RNIB that I met other VI people my own age from all over the UK.
It was also at this time that I first met my Transitions Officer. She worked for the RNIB and initially was someone I worried about meeting up with because she would ask me about my plans and goals for the future. LOOKing back, she was the only person challenging me to think about the future in the context of what I’d like to do, not what I thought I could most easily do. She would stay with me throughout my educational journey and was a great help in supporting me to advocate for myself and my wish to go to a specialist residential school to do my A-levels.
Transitioning to Sixth Form and finding Utopia!
New College Worcester (NCW) sounded like a sort of Utopia where I wouldn’t be the odd one out, I wouldn’t need to worry about being able to access my work, and I could learn mobility and independent living skills in a setting where I wouldn’t be embarrassed to try those things. My main motivations for applying to NCW were the social element, and the opportunity to develop mobility and independence skills as part of my curriculum.
Despite seeming like the toughest transition on paper – moving away from home for the first time to a school more than 100 miles away – my move to NCW didn’t feel difficult. During the two years I was there I gained so much socially, academically, in my independence and mobility skills, and my general confidence. NCW was also supportive in helping me prepare for the practical elements of moving to university e.g., DSA applications and liaising with the Disability Support Services. What I lost whilst at NCW was my connection with friends from home and mainstream community.
Moving on to University
The transition to university was the hardest. After two years at NCW, going back to a mainstream setting felt like a culture shock. I’d become out of practice in advocating for myself, both formally with tutors and academic staff but also in social situations. Another factor that had an enormous impact on my transition to uni was the delay in getting mobility support, because this had a knock-on affect on my social life, independence and confidence.
I didn’t receive mobility support until the tail-end of my first year, which meant that for a big chunk of that initial stage of everyone getting to know each other and trying out clubs and societies I didn’t have the autonomy to do those things independently. I left NCW with decent cane skills, but without the knowledge of local routes to implement them I was reliant on an intricate system of note takers and support staff to ferry me around campus. This felt so undignified and really ate away at my self-esteem, and essentially left me stuck in my room in halls for most of the time outside of lectures and seminars because I didn’t want to be a burden to other students.
This restrictive lifestyle, on top of the inevitable teething problems of not getting course materials in accessible formats and temperamental technology made my first year a pretty miserable time. A researcher from the longitudinal study shadowed me for a day during my first term, and I was honestly embarrassed that she witnessed a seminar that I couldn’t participate in because I’d not been able to access the session materials ahead of time and then having to wait around with me before being able to go to the library because the note taker who was meeting me was late.
The two things that really turned my university experience around were my Transitions Officer and getting a guide dog. My Transitions Officer worked really hard advocating on my behalf with the university to get the right support in place, and in motivating me to keep working towards my goals when I was so tempted to pack it all in. She also supported me to secure a work placement in my second year, which was a really positive experience for developing my employability. Getting my guide dog half-way through second year was a total game-changer because enhancing my mobility had a knock-on positive affect on my independence, social life and confidence. By the end of my studies, I was graduating with a 1st class degree, a group of good friends and a summer job.
But what next…? This is the point that can feel daunting, when you come out of education and have to fend for yourself in the big wide world of work. Throw some devastating statistics on the rate of unemployment for blind people into the mix and you’re under a whole other level of pressure.
I feel so, so fortunate that in the end I was unemployed for a period of less than a year. Again, my wonderful Transitions Officer was a star during this transition, supporting me with everything from job applications to finding a place to live. I spent 10 months after graduation, job searching and volunteering, and this is the time when I first became involved with LOOK as a volunteer mentor.
As I was accessing unemployment benefits I was also required to work with Jobcentre Plus, but their online job searching systems were inaccessible and it was painfully obvious that the Disability Employment Advisor had very little aspirations for someone like me. The most positive thing they did was refer me to Remploy, who are leading providers of specialist employment and skills support for disabled people. Through a combination of support from Remploy and my Transitions Officer, I successfully applied to the Change 100 programme – a paid internship scheme for disabled students and graduates run by Leonard Cheshire.
Volunteering and Internships
Change 100 was a really positive experience. The team were happy to work with me to iron out any accessibility issues in the assessment process, and I secured a summer internship at the Royal College of Radiologists in their events team helping organise their annual conference. This meant relocating and commuting into London every day for four months, but with mobility support and escalator training from Guide Dogs, it was ultimately a very smooth transition. I could hardly believe I’d landed ‘living the dream’, working in London!
And another tick on the bucket list was just around the corner. In tandem with applying for countless jobs and grad schemes, I’d also been working with LOOK to apply for an international volunteering opportunity through European Voluntary Service (EVS). EVS is an Erasmus funded programme hosting volunteering projects all around Europe for young people aged 18 – 30. In my research I’d found an EVS project in Belgium that catered specifically to visually impaired volunteers by including mobility support and accessible language lessons as part of the arrangements. LOOK was my sending organisation for the project – mentoring and supporting me in the transition of moving to another country and throughout the 9 month duration of my time in Liege. Living and volunteering abroad was a transformative experience where I learned more about myself more than anything else, and the constant support from LOOK at that time was invaluable.
Finding a job
I was therefore delighted to successfully apply and be offered a job with LOOK, ready for the end of my EVS project. I started working part-time as Events Officer in 2018 and am still working for LOOK today, though my role has changed since then and I’m now working full-time. My job with LOOK was my first long-term contract, and also my first experience applying to the Access To Work (ATW) scheme.
The idea behind ATW is to provide equipment and support to empower disabled people to be independent in the workplace, and for the most part, it achieves this. However, their inaccessible administrative processes, long waiting lists and patchy communication makes the service renowned for being a bit of a headache to deal with. Ultimately, I am grateful because without ATW I would not be able to do some elements of my job and would be unlikely to have progressed to my current role. But, in an ideal world I would love for the ATW systems to be more user friendly and designed with disabled people in mind. I will never get over the irony of needing sighted support to fill out the paperwork required to authorise the claim for my sighted support.
Throughout these different stages of my journey through education and into employment, I’ve stayed in touch with researchers from the longitudinal study by conducting an interview each year. I am very glad to have been part of the study and have enjoyed my participation because each interview has been a useful opportunity to reflect and look ahead to the future. I am proud to have taken part in research that will hopefully help make transition experiences for future VI young people a bit easier.
Elin’s reflections also feature on the Thomas Pocklington Trust website, where you can read more about the experiences of VI students.
To find out more about VICTAR and the Longitudinal Study, please click below.
For more information on becoming a mentor for LOOK, or accessing our mentoring services – available for 11-29 year olds, please click below.