Words, words, words: they matter

When Emma posted the theme of the disability blog Carnival as ‘Words’, I thought there was nothing more perfect for me. Almost exclusively, I love words. This is the child whose first word was “book” and who is calmed even now when I am despondent, by reading.

I am also the person who is striving to make a career from words and from understanding their meaning. I speak at children’s literature conferences and I am most happy and accepted while there. I read to severely disabled children once a week. Words, though, aren’t without their connotations and their price, in terms of my mood, depending on the situation. When a carer greets me “Hello dear”, when they’ve just walked in off the street and I have no knowledge of them, I will say with an edge in my voice “I am not your dear. Don’t do that!” When they’ve been training – my needs require two according to excessive health and safety rules, the junior one always says “Ooh, she knows everything” if I remonstrate with them over a rule of manual handling which they’ve missed - “no, my legs stay on the bed”. If I am truly riled, I will retort “yes, I do know things, I could teach you this routine blindfold!”

Words and disability have also had a direct impact on my educational attainment. My Master’s degree was in children’s literature and its portrayal of disability focusing on wheelchair use in fiction. Interestingly, when I progressed to doctoral level, having changed faculties to Education (not my first choice), I was not certain how to tackle my research project until my philosophy tutor whose mental capacity astounds me and who has also taught in special education, said of the phrase “the girl in the wheelchair”, “do you know how loaded that is?” My answer was “no, I never really thought about it, I grew up with it”. That became one of the germs of an idea for my research project.

Not all educationalists, however, are so initially enlightened. An older professor, yes, you know what’s coming, was teaching a particular article which said that teaching disabled children and teaching reading was not a skill. I exploded. I’d like to see him try. That professor is now teaching the article differently and I find myself constantly educating the educators about disability.

It is vital that we remember, and this was not something I was always good at, that it is possible to communicate very eloquently without words. Most of the children I mentioned earlier do not have much, if any, functional speech. Don’t tell me they can’t communicate! That is a big lie. They can be just as angelic or just as frustrating as any other child. We just have to learn to look and listen differently.

Sometimes, the absence of words about capacity, capability or the lack of, can be equally supportive. It makes me feel great if I am in an environment where I am not defined by the above words and I am just ‘me’. Yes, my disability exists and it always will, but people are relating to me as a whole person not to me as “the one in the wheelchair”. This attitude is increasing and when I find it, it is such a gift. The word that describes it is “acceptance”.

Becky Butler.Words, words, words: they matter.

When Emma posted the theme of the disability blog Carnival as ‘Words’, I thought there was nothing more perfect for me. Almost exclusively, I love words. This is the child whose first word was “book” and who is calmed even now when I am despondent, by reading.

I am also the person who is striving to make a career from words and from understanding their meaning. I speak at children’s literature conferences and I am most happy and accepted while there. I read to severely disabled children once a week. Words, though, aren’t without their connotations and their price, in terms of my mood, depending on the situation. When a carer greets me “Hello dear”, when they’ve just walked in off the street and I have no knowledge of them, I will say with an edge in my voice “I am not your dear. Don’t do that!” When they’ve been training – my needs require two according to excessive health and safety rules, the junior one always says “Ooh, she knows everything” if I remonstrate with them over a rule of manual handling which they’ve missed - “no, my legs stay on the bed”. If I am truly riled, I will retort “yes, I do know things, I could teach you this routine blindfold!”

Words and disability have also had a direct impact on my educational attainment. My Master’s degree was in children’s literature and its portrayal of disability focusing on wheelchair use in fiction. Interestingly, when I progressed to doctoral level, having changed faculties to Education (not my first choice), I was not certain how to tackle my research project until my philosophy tutor whose mental capacity astounds me and who has also taught in special education, said of the phrase “the girl in the wheelchair”, “do you know how loaded that is?” My answer was “no, I never really thought about it, I grew up with it”. That became one of the germs of an idea for my research project.

Not all educationalists, however, are so initially enlightened. An older professor, yes, you know what’s coming, was teaching a particular article which said that teaching disabled children and teaching reading was not a skill. I exploded. I’d like to see him try. That professor is now teaching the article differently and I find myself constantly educating the educators about disability.

It is vital that we remember, and this was not something I was always good at, that it is possible to communicate very eloquently without words. Most of the children I mentioned earlier do not have much, if any, functional speech. Don’t tell me they can’t communicate! That is a big lie. They can be just as angelic or just as frustrating as any other child. We just have to learn to look and listen differently.

Sometimes, the absence of words about capacity, capability or the lack of, can be equally supportive. It makes me feel great if I am in an environment where I am not defined by the above words and I am just ‘me’. Yes, my disability exists and it always will, but people are relating to me as a whole person not to me as “the one in the wheelchair”. This attitude is increasing and when I find it, it is such a gift. The word that describes it is “acceptance”.

Becky.

Post for OMBH

I'd intended to take part in this blogswarm but found myself wondering if I really had the courage after reading some of the extremely personal posts. I do. However, as Emma has warned us, what I consider appropriate language for disability may not be considered appropriate by other people.

That said, who am I? Am I the 28 year old woman who needs to be hoisted and physically cared for much of my daily life? Am I the 28 year old woman who has embarked upon her doctorate of education, teaches in two primary schools as a volunteer and chairs a charity which supports one of those schools? I'm both those people and what I long for most is that people see me as the doctoral student and friend who happens to be disabled.

Mr. Cameron's latest reforms, although that's a polite word for them, will cause me to be even more isolated and struggle even more for a basic right to have some form of life outside of the four walls of my home. Heaven forbid! A career?!

The proposed reforms make me so angry. Mr Cameron wants everyone, and he stressed everyone (including wheelchair users with cerebral palsy) to contribute to his vision of a big society and to be aware of the lives of others than themselves. Someone, I think it was Mahatma Gandhi, exhorted us to be the change that we want to see. That's what I'm trying to do. Please help us Mr. Cameron. Don't hinder us. And did you forget - one of your family belonged to 'us' too? What you don't know, Mr Cameron, is about the black hole of lack of support a disabled person falls into once they reach eighteen.

Friends?!

Ms. Feisty has been feeling a bit deflated lately. My best friend who I've known since I was nine visited yesterday to bring me some stuff that I asked her to get for me when she was in New York. So far , so good. She then tells me that she can't accompany me and one other friend on my birthday theatre trip next weekend. This, despite having accepted the tickets ages ago when we booked. Her boyfriend has asked her to go with him to his best friend's wedding and his twin sisters' birthday party, all on the same day as mine. This with just under a week to go. I am very unimpressed since we have spent my birthday together since we were both 16. Grrr. Becky

Afterwards

Have just got back from interview. Very positive, I think. But it's all rather hazy now. She ripped my original proposal apart but from what she said, this is normal and she didn't say "Goodbye, we don'e ever want to see you again!' New proposal due September 4. Am relieved it's over. Hopefully, I can stop feeling nauseous now.....
Will probably write more when I've had time to process this.
Becky

T minus 1

Tomorrow I have a very important interview. If the outcome is positive, I will have achieved something I've wanted for the past four years. I have an interview with the Education Faculty to see if they will admit me for a PhD. I won't say anything else because I am very afraid of jinxing this. When I have recovered, I will let you know the outcome.
Tutoring is going really well. One of my pupils is really getting the concept I've been helping her with and the buzz that gives me is huge.
I finally got a replacement part for a piece of mobility/independence equipment which had come off the worse in a rainstorm. This storm was one of the worst I have seen in my life and I was out in it and it was like being on a boat!
Final thought. Thanks so much Kristie for your comment. You're right - it probably is going to be pretty addictive.
Becky

My first foray into the blogosphere

Hi anybody who's reading this! My name's Becky and I'm borrowing the epithet "wheelchair princess" from Emma - thanks. I'm almost 25, have spastic quadraplegic cerebral palsy and am a wannabee academic. My subject is Children's Literature and yes, that IS possible. I have a Master's degree and am on the first (shaky) step of the ladder to higher things. Fingers crossed.

I love children and am a tutor in English to Primary/elementary school kids. I have two pets, both felines, one named Albus, the other Midi (short for Midnight) and yes, I am obsessed with all things Harry Potter. For other HP fans, my favourite book is number 3, followed by 5 and 7.
I still live with my Mum and Dad and we are close. Moving out is just something I don't want to contemplate yet.

I am a full time wheelchair user and would tick the box on any form which says "cannot walk at all". For any other people dealing with cp, I have been educated in mainstream education from the age of seven - most appropriate thing ever for me, though not for all children, I know - and have not let my disability hold me back. Hence my blog title!

I set this up because I have drawn much comfort and inspiration from reading other people's blogs and hope that my story might help other people. Oh, and I adore writing!

Comments and sensible queries are welcome. I hope to hear from you.
I live in England.
Becky