An Unbeaten Path

By Sarah Rose

(UCMD, England)

“You won’t last two weeks,” said my Dad.  I was eighteen years old, about to leave home for university. I realize now that this was his way of giving me the determination to get through three years of studying and living without the safety net of my parents and my little sister. But at the time I remember thinking, “I blooming well will, even if just to prove you wrong!”  My first weekend I did end up in the Colchester Accident and Emergency department after falling and cracking my head open, but that was a minor hitch and I graduated with a BA (Hons) in English Language and Linguistics in 1999.

I lived in a specially adapted flat on the university campus and received assistance from Community Service Volunteers (CSVs), some of whom were in England to help themselves learn English, which tied in pretty well with my chosen subject. They helped me to get around and I helped them learn a language – seemed a pretty good deal.  I enjoyed all aspects of my degree and have been able to apply it in the work I have done. My career path is not that conventional, but my interest in language and the value of communication seems to be the thread that runs through everything thus far.   

Volunteer Work

I did not have a plan when I came home from university and needed some time to regain my energy after my final year. I wanted a taste of the workplace so I volunteered with an organization which produced Talking Newspapers.  I edited publications to be sent to Blind and partially sighted subscribers who had text to speech software, but I did dabble a bit in reading for those who preferred audio recordings. I loved feeling a part of something and it seemed a worthwhile thing to do. I had to stop when I began studying for my MA, but in the time I spent there I gained confidence, self-discipline and the work environment was adapted to my physical ability – a positive taste of the world of work.

I also did some speech and language work for the Stroke Association, which involved visiting a local lady whose speech had been affected by a stroke. I was able to call on my studies for the first time and this was the point when I realized that it had all been worthwhile.  

A Masters, Working in Education

I got the study bug again and decided to do a Masters degree with a home study program called the Open University. This time I chose Education, but all the way through I kept my focus on speech and language and inclusive education. The degree involved three year-long courses, one of which required classroom experience, which led me to work voluntarily in the Learning Support unit at my old secondary school. After my first year there, I was offered a permanent paid position as a language advisor and was asked to develop a program for students with social and communication difficulties.

I spent seven years at this school, working with students aged 11 to 16 on a one-to-one basis and in small groups. Some needed confidence, others had specific language difficulties and my role was to devise individual plans to support their language needs. The kids were amazing, often fascinated by my disability and not afraid to ask questions. I found it easy to establish rapport with my students and it gave me the excuse to act a bit silly sometimes!            

Teaching English as a Foreign Language

While working at the school I also did a course on English Language teaching so that I could gain some practical experience teaching foreign speakers and also managing a class of students, developing lesson plans and so on. I was extremely nervous on the first day and spoke to the tutor afterwards about my concerns about physically managing the teaching. I started worrying about things like writing on the whiteboard, counting out syllables on my fingers in the way we were shown. I need not have worried, though, as my tutor said something that has stuck with me ever since: “Just do things the Sarah Rose way.”

I got so much out of this course. It taught me how to adapt activities not only for the students, but for myself, and in fact, asking the students to do certain things helped to make my lessons more interactive. I had thought my quiet voice and inability to move around might be an issue, (I stood while teaching, for better breathing) but again my tutor said it held the students’ attention. I gained confidence in myself and when I had to take control of a disruptive class by raising my voice and being firm, which does not come naturally, it actually worked and I was quite proud of myself!

I passed the course and have been able to put it to good use by helping out with local free English classes and tutoring a number of foreign students from home.

Social Policy, Website Moderating

About 4 years ago, I felt the need to do something new and applied to do social policy work for a local branch of Citizens Advice. It took me a while to learn the ropes and I am still learning, as government policies change and the people in my area are faced with new challenges. I can do a lot of work at home, like writing reports, researching issues where people might be facing discrimination or are treated unfairly, and as the work in school became more difficult to keep up with, I gradually increased the work I took on at the Citizens Advice Bureau.

Instead of dealing with direct communication, I now deal with instances where certain types of communication break down on a regular basis, and in some small way feel like I am doing my bit to change things for the better. 

Finally, another very important role I have taken on is as a volunteer moderator for the Muscular Dystrophy Campaign (UK national charity).  I collaborate with three other “mods” to keep the MDC’s forum running smoothly, answer queries and point members in the right direction, and I have helped develop a tiny corner of the web where people can talk about their MD experiences, find support and information and make friends. I have enjoyed every job I have held so far, but I consider this to be my most rewarding to date.  And soon, I will have a custom built electric wheelchair, which may give me the opportunity to take on different roles and be much more independent in the future.

While writing this piece, it occurred to me that I had not touched upon any of the difficulties in working with CMD, and there are difficulties, to be sure.  However, I suspect this is because I have been realistic in my goals, and willing to adapt the way that I do things in order to overcome the challenges of the unbeaten path.

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  • Congenital Muscular Dystrophy

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