Saturday, 23 June 2012

Moving into the unknown - a reflection

A reflective piece on my perceptions on disability, family and community attitudes and where I stand as an adult.

Childhood attitudes

As children, we were often told not to complain with the response from my Mum, ‘Just be glad you haven’t got a hare lip and a cleft palate’. This was generally ineffective, because neither my sister or I had any idea what a hare lip or a cleft palate was and my mum certainly didn’t seem to be in a hurry to explain. What we did learn from that was that to have such a thing (obviously so disastrous that you couldn’t talk about it openly) was to be unlovable, or at least that is how it came across.

My mother was employed as a primary school teacher throughout most of my childhood and teenage years, and inevitably we heard quite a lot about the goings –on of her days at school. Usually she appeared to enjoy her job and it kept her very busy. Sometimes though, it was very stressful for her. In particular, we would hear complaints about the children or child who was ‘creating’ this stress with their behaviour. One child, whom I cannot remember his real name, was described as ‘an out of control garden hose’ and my mother spent many hours debating with my old-school principal step-father about how ‘those sorts of children shouldn’t be placed in regular schools’, because it was too stressful for the teachers.

I also heard occasionally heard my mother, sadly, saying that these children with a disability ‘should have been pillowed at birth’ such was her attitude at the time. I find this really sad to think about now and as a child, such attitudes confused me. I felt in myself that I would have to be perfect to be accepted by my mother, and indeed, at times I came across illness or deformity of any kind (such as cold-sores or a problem I had with my toe growing the wrong way), I felt I had failed her. Luckily I was an avid reader, and my journeys into the worlds in the books enabled me to see the world from the perspective of others, helping me develop a high degree of empathy. A book about the life of Helen Keller, for example, enabled me to get into the mind of a person with blindness, to some extent.

My grandma was a character. She had a zest for life and an active brain, which unfortunately had to compete with the frustrating of a body that was failing her, riddled with debilitating rheumatoid arthritis. Her hands folded into themselves, with knuckles inflamed and knees as swollen as soccer balls. She used a walking frame on which she hung her ‘dilly bag’, that she would make jokes about. The most sad thing was that she refused to accept her worsening condition, mainly because of pride. She didn’t want people down the street (she lived in the small Victorian town of Kyneton for most of her life) to see her ‘like this’. She even refused to come to my wedding, as she was too embarrassed. I believe she also had depression, though this was never diagnosed.

Schooling in a small country town

I grew up the small town of Eaglehawk, an outer suburb of Bendigo in Central Victoria. During my school years (1978 – 1990) this town was a mainly Anglo-Saxon, hetero-sexual community with little tolerance for ‘difference’. People who didn’t fit into the ‘norm’ were ridiculed. I did not have any experience of studying side by side with students from other cultures, or with a disability that was ‘noticeable’. At high school, we had a boy with a disability, called Ross, enrol and it was a major effort for the school to accommodate him. I remember the ‘fuss’ when they installed ramps for his wheel-chair and we even had a special assembly before he arrived. My friends and I took little notice of Ross, except to quietly make fun of his speech impediment, and call him (only to ourselves), ‘Roth’. I feel ashamed of this now, but at the time it was what I knew and what I had been exposed to. Interestingly, a few years later I made friends with an Aboriginal family across the road, and soon experienced my first example of the racism and lack of tolerance for diversity, when other students called me racist names and began a stream of hurtful comments and jokes about aboriginals, all aimed at me for being friends with an Aboriginal boy.

Moving towards diversity

As an older teenager, I worked with elderly people, running sing-alongs at an aged-care facility and then moving onto some care aspects such as showering. I volunteered as a visitor for community service in Year 11 and I remember having to work with my feelings of discomfort to be able to do it. I found the smells particularly offensive, though tried to keep this to myself. I also later helped out at a day-centre for adults with disabilities, I didn’t stay long as once again I found it very uncomfortable, especially where language and communication barriers were an issue.
A few years ago, I came across some information about a very rare genetic disease, Epidermolysis Bullosa. I read some books written by the parents of a child who has this disease. These children are often called ‘butterfly children’, because their skin is as fragile as butterflies. I think this was the first time I really put myself in the shoes of someone with a disability. As a social worker, I have come to know a number of children with disabilities, though these have been moderately mild, including autism and intellectual disabilities. I also did some casual teaching at a special school, in both the younger and older age groups, which I found very challenging. I felt a strong connection to the children but found the behaviour management too difficult as an untrained worker. My ex-husband taught in special schools for a few years, and I had some limited exposure on the occasional visits to the schools. He didn’t talk to me much about his experiences.

Where am I now?

So, where do I sit now, in attitude and perspective?

I feel like I have a big gap in my knowledge base about the various disabilities that people have. I also feel that I have had very limited exposure and have not had a chance to get to know people who have a disability. There is still some degree of fear of what to expect, of what to say where there are language and communication difficulties. This could be a big barrier to me being successful when working with clients who have a disability. The fear could get in the way of me conducting thorough assessments, as I might have a tendency to rush them or to get all the information from the carer, rather than allowing the client to be part of the decision making process. It might put me off working in this area, indeed, I think I have been deliberately avoiding this area of work since I began social work.

So how will I address this?

Well, this time I want to face my fears head on. I want to learn more about the various disabilities. I want to get to know the story of people with a disability. What is it like to live with each of the disabilities? What is their experience of discrimination and what has this meant for them? What are their strengths?

I want to get a stronger sense of the ethics behind working with people with a disability too, and move away from my mother’s attitudes, by gaining knowledge, understanding and empathy. To get the most out of my student placement in this area, that is what I aim to do.

What plant am I?

What plant am I? 

1. I often wear a dress of bouncy green hearts.

2. Wild swine like to dig at me.

3. My most delicate and beautiful feature (my petals) are bent outwards or up, are sometimes twisted and connect at the base in a cup-like shape.

4. I have been known to help the healing process of cataracts, sunburn and gout.

5. I often begin flowering in autumn, and have a dormant period over the summer.

6. I am a native of Europe and the Mediterranean region east of Iran.

7. Symbolically I have been associated with resignation and goodbye.

8. I am a popular house-plant and my petals grow in red, pink and white.

Answer: I am a cyclamen!
Sue Oaks, Copyright 2012.