Perceiving Disability

By Flora Whitehead

When I was 14 I wrote a diary. It was at a time when I was slowly starting to recover from a bad patch of Myasthenia Gravis, a condition that causes muscle weakness. I had been taught at home for two years, having extreme difficulty with moving, walking, talking, eating and just about everything. I’d spent months in hospital in London. But when I wrote the diary I’d started taking steroids and slowly began to get stronger. It was a difficult year, a year of frustration because I was getting better, wanting to do more things, be a normal teenager. I’d lost my friends over the two years at home and I’d grown up too quickly. Although my disability didn’t go away, it became controlled. I went to College, I did A Levels, a Degree, a Masters Degree, lots of music exams. I became an English teacher and now a Head of English and Maths in Further Education. And I have a love of music – singing and playing. I found this diary recently and shared it with my daughter reading it with sadness and laughter; a chronicle of the minutiae of my life over a whole year. But at the time of writing the diary I didn’t know how bad my eyesight would become, that I would develop epilepsy, that I would lose all my hair.

I read this diary with my mum and it made me feel sad knowing she didn’t have the childhood that I had. But it also made me understand her better. I didn’t know about the challenges she’d had to live with when she was younger and I don’t think I really considered how hard it was for her as she went through life facing more difficulties – not just more and more physical problems but also the death of her mother and her eldest son, only a year apart. Now I can really appreciate what a strong woman she is, how she never gives up, how determined she is to succeed. In this book I wanted to show my mum now, what she has to face every day, juxtaposed with photographs from earlier times and quotes from her diary so that others can understand.

“Don’t know what’s the matter with me but I think Mum’s noticed that I feel depressed, but just as I thought she’s connected it with Myasthenia Gravis… She thinks I’m miserable because I’m not getting stronger, but I am getting

stronger.”

“I feel as though I want to get out and meet people and do things, but I can’t because I’ve got no friends to get out and do

these things with.”

“The fact is I don’t know why I feel this way. Half the time I want to be on my own, and the other half I want

to go out and meet people!”

“Depressed this evening! I feel as though Penny’s taking me out because it’s her ‘duty’ to do so and I don’t like that, I wish I had a

friend of my own to go out with.”

“I suppose in a way I’m lonely, and half wished we lived in a town. I’d love to have a best friend, someone you know

cared for you, loved you, it must be a great feeling.”

“It was some benefit that had been owed to me, but we hadn’t claimed for it, and it had gradually built up! From Feb 1st I get £7.50

a week!!”

“Missed off my 6 o’clock tablets this morning, but it has made me weak, so I’m going to have them.”

“I’m starving though, only had 612 calories today! To make up for last night. I hope with all this hard work that I do lose some

weight and get a nice figure, but it’s going to take a long time!”

“What Mum and Dad don’t understand is that I want to push the whole question of Myasthenia Gravis to the back of my mind, and

don’t want to talk about it unless absolutely necessary!”

“I’m not really depressed because of Myasthenia Gravis except, perhaps, not having any friends, because Penny is not a friend! Its just that I’m

scared of not making any friends and being on my own.”

“The last day of my first diary! I do not know whether I shall be keeping a diary next year, I have not got one yet, the one I had

for Christmas had to go back because the lock did not work properly! Looking back over the year I can safely say that my

whole life has changed from the beginning of the year to now. At the beginning I did not know how many ‘o’ levels I would

get, I had no intentions to becoming a bi-lingual secretary, I did not know that I was going to go to college. It has been a year of ups and downs; ins and outs, one of working, waiting for the ‘o’ level results, waiting to get into college etc. and it has flown by! I do not know what next year will hold, I hope to go to France at Easter and to Scotland to stay with Sue Fingleby in the summer,

I am also going to strive to get my 100 word per minute shorthand! Anyway next year I resolve to work hard at college,

get thin and be generally nicer!! HAPPY NEW YEAR!!!”