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.