Following on from the Identity memo 1, I want to explore another area which is important to my research and which also has a long root in my life, namely my interest in disability and related areas.
I suppose my first conscious interest in disability was in 1966, when as a 16 year old I went on a working holiday to a Leonard Cheshire Home and met people who had quite severe impairments for the first time. At the time, I can remember being impressed by the ethos of the establishment – the concept of family and not referring to disabled people as residents or patients. It made enough of an impression on me, that I returned the following year and began to look at possible career options that might involve working with disabled people.
However, my awareness of health and illness goes much further back than that. Before her marriage, my mother had been a nurse and she retained an active interest in her profession, acting as secretary to the local branch of the Royal College of Nursing. She had done both mental and general nurse training, but her interest was in mental health and she would speak of her experiences and about how difficult it had been to enter her chosen profession – she encountered a lot of opposition from her family because of the low status nurses were perceived as having in the early 1930s when she commenced her training.
I would guess that my mother’s stories had quite a lot to do with me choosing to join the Junior Red Cross and undertake basic training in first aid, home nursing and child care.
I can’t claim that I thought much about disability again until about 1980 when I was working for a local authority as voluntary organisations liaison officer. I was involved in the planning of our response to 1981 – International Year of Disabled People – which led to two specific projects – developing an access guide for the borough together with the head OT and involvement in establishing a local disability association. I also got involved in setting up a parent support group. At a personal level, the spin off from this was taking a postgraduate Masters degree and doing a research project on local disability associations and the implications of them being run by and for disabled people or by able-bodied for disabled. This linked to the thinking of the Wolfenden Report on the future of voluntary organisations and the role of intermediary bodies and to the changes within the disability movement more generally that recognised that disability was not an obstacle to being able to run organisations, engage in social and political action, etc. I can remember being shocked by some of the attitudes I heard expressed by people then responsible for the voluntary/charity organisations and also being impressed by what I saw disabled people doing.
My next career move was to leading a multi-disciplinary social services team with a focus on disability and older people. As described in identity memo 1, a key element of my work there was enabling our ‘clients’ to have as much control as possible over the services made available to them.
Moves followed into voluntary organisation management and motherhood. It was as my son began to develop that disability became a much more personal concern. It was very clear that my son was exhibiting different behaviour from other children of his age, and though I put some of this down to the effect of living in Germany and being between cultures, concern was also expressed by the Kindergarten he attended. I was subjected to a very difficult discussion with the Kindergarten staff when I was effectively told that it was probable my son would never live independently and would probably not be able to attend a normal school. To say this was done clumsily and without warning is an understatement. The fact that the conversation took place in German made it all the more difficult – was I really understanding what I was being told.
Following initial assessments with a German paediatrician, we learned we were returning to the UK. My hope was that my son’s behaviour would settle once he no longer had to cope with two languages and different cultural expectations. The reality was that very soon his school were making referrals to the school nurse and we ended up with CAMHS and the start of the long journey to finding out what lay behind my son’s differences and getting appropriate support for him. That journey also led me, together with others, to set up a parent support group and convinced me that it was essential for parents to be adequately informed and supported so that they could obtain the support their children not only needed, but had a right to.
I could unpick those personal experiences a great deal more – the attitudes of the different professionals I encountered, the lack of knowledge some professionals had of the support infrastructures, the journey to getting a statement for a very able and intelligent child who just was not coping in school, the encounters with mental health services and the failures of services to address needs appropriately. Elsewhere I have documented the roller coaster of emotions I experienced and the details of that journey.
Now I am able to step back a little. My son is now an adult and is doing very well. But I am still actively involved in parent support groups and my personal experiences are very much the driver for my research. Sometimes I feel I am too close to what I am researching and too influenced by my own experience. At other times, I recognise that even when going through the worst of times with my son, I was operating both as parent and professional and maintaining a level of professionalism and objectivity which I did not feel.
A further aspect of disability is now impinging on my life and consciousness. My own health and fitness has deteriorated, to some extent because of my failure to care for myself appropriately, and I am having to recognise there are things I cannot do that I might want to do, but my energy levels are inadequate.
So throughout my life, I haven’t been very distant from issues of health, illness, mental health, disability, and SEN.