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Lived Experience of Impairment, Disability and Social Work

Co-written with Helen Burrell

Introduction

Now in my fifties, I have had physical impairments since the age of twelve, following a fall during cross-country running at school. Slipping on the wet grass, I did the 'splits' and dislocated my hip; however, this diagnosis didn't come until some months later, as the ongoing pain in my hip was dismissed as growing pains. Since I was in pain and constantly falling over, my mother pushed the matter with the medical staff, and I got to see a consultant who diagnosed the dislocation. Surgery followed, and I was on crutches for six weeks. As I turned thirteen, I remember experiencing further pain in my hip. This was initially dismissed, and I was told I was simply seeking attention. After further falls and what can only be described as agonizing pain, my mother took me to casualty. An X-ray identified that the blood supply to the hip had been affected and the bones had disintegrated; the screws implanted during previous surgery were also poking out where they shouldn't have been! I remember spending nine weeks in hospital, on an adult ward - a thirteen-year-old girl surrounded by older women having hip replacements.

I have had further surgery throughout my life, and ultimately, after a series of unsuccessful hip replacement operations, the hip joint was removed. I recall a conversation with the Benefits Agency, which advised me that I must have a hip joint as 'hip replacement' was the only option on the benefit application form on their system. I assured them I didn't. I now mobilize with either elbow crutches or a wheelchair. As I have developed additional conditions over time, my consultant is insistent that I use the wheelchair far more than I have done previously; I have mixed feelings about this. I also have mixed feelings about and experiences of social work and social workers.

First encounters with social work

Having spent long periods of time in hospital as a child, I missed a lot of my schooling. My mother was concerned that I wasn't having any teaching, but my old school would not take me back; because of my crutches I was described as 'a liability' and 'a risk' to myself and others. My mother was advised to make contact with social services with a view to my attending a special school. She visited a special school and was very concerned: 'Helen will be bored to tears here.' She wanted me to attend mainstream school and contacted the local authority, highlighting my need for appropriate schooling.

I remember a social worker visiting my home around this time. I recall her greeting me, but then being sent to bed while she and my mother discussed my situation. I believe she was completing some sort of assessment. I heard my mother take her to the kitchen, saying, 'This is where Helen has to wash, in the sink.' The bathroom upstairs at home was no longer accessible. Fortunately we had a downstairs toilet, but unfortunately, as I couldn't bend my knees when I sat on the toilet, I couldn't shut the door; imagine the impact on my dignity, a teenage girl with such limited privacy. I recall my mother putting up net curtains in the kitchen so I wouldn't be seen as I washed. The visiting social worker advised that, as I couldn't get up the stairs, this was acceptable. My mother explained her concerns about my lack of schooling and also my mobility, telling the social worker that I couldn't walk far on the crutches. Following this visit, a wheelchair was arranged for me, and the social worker also facilitated arrangements for a home tutor, who visited three times a week. Though I hardly spoke to her, the social worker had made things happen that made life somewhat easier.

I recall my home tutor teaching me outside in the garden, as she was pregnant at the time and experienced bouts of morning sickness; she felt less nauseous outside in the fresh air. After a period of time, a place at a mainstream school was identified for me. It was a small school, just for girls, and the headmistress was very supportive. Once I was there I don't recall any further involvement with social work as a child; my next encounters with social workers would be in my adult life.

Encountering barriers

My place at school was sorted, but getting me there proved quite a challenge. The school I attended was a long walk away, and my mother spent the spring and early summer months pushing me there in the wheelchair; with the bad weather coming, she believed this would no longer be possible and contacted social services to request support. The solution that was made available to me was a place on the bus that transported children to the special school, the school that my mother did not want me to attend. Its hours were shorter than those at my mainstream school, and the bus times reflected this; I was dropped off at my school at 10.00 a.m., thus missing early morning lessons, and collected for the home run at 2.30 p.m., missing another hour of schooling. I had already missed two years of my education because of time spent in hospital and now I was missing over a day a week. Fortunately, a chemistry and biology teacher saw my interest and potential in her subject areas and spent additional time with me over lunch breaks, helping me to catch up.

My curiosity in the sciences continued, and I developed an interest in pursuing a nursing career. This interest was quashed by the school careers advisor: 'People like you don't go into nursing.' I didn't challenge this advice and resigned myself to the fact that I wouldn't be a nurse because I was disabled. Some time later, the local NHS organized an information event showcasing the range of career options available and offering opportunities to shadow different professionals. My curiosity and interest motivated me to attend, and I ended up spending time with the radiographer. My interest in nursing was replaced: I had discovered my vocation. After further study and training, I achieved my goal and became a qualified radiographer. It was a career I loved and one I continued in for some years. It gave me professional identity, purpose and financial independence. However, it wasn't to last to a 'normal' retirement age. I had ongoing health problems and further physical impairments and ended up taking early retirement on health grounds. Looking back, it all seemed to be something of a fait accompli; I recall no appeal, no fight with the health authority - just a tacit agreement that I would take my money and retire.

While this was the end of my radiography career, it was certainly not the end of my working life. I have designed and delivered 'disability awareness' training, provided consultancy work, led expert patient programmes, and coordinated service-user involvement in public services and higher education institutions. I have also taught on a range of health and social care programmes at two universities. Securing employment has not always been easy, however, and I have often found myself on temporary contracts or short-term projects; while enjoyable, such work reduced my financial security and often complicated my welfare benefit entitlement. Learning to drive and having an adapted vehicle has facilitated my engagement in all kinds of activities, enabling me to travel independently with much greater ease. However, even a planned shopping trip to the supermarket becomes problematic when the 'disabled' parking bays are all taken (and not always by disabled parking permit holders!). What may appear to be nothing more than difficulty finding a parking space is actually a wasted journey, a period of stress, and a necessary rescheduling of the weekly shop.

Models of disability, law and policy

Following changes in the law relating to chronically ill and disabled people, I recall receiving a leaflet through the post that outlined health and care pathways. The diagrams showed a range of services and support through which people would 'travel'; the end of the pathway was 'being cured'. In tiny letters at the bottom of the leaflet were the words 'Not all illnesses can be cured', followed by a full stop. As I re-read the pathways, I thought, 'Well, doesn't that just sum it all up!' Disabled people are put into the pathway machine and they come out cured or not cured. The 'cured' person carries on into education, training and employment; the 'not cured' person is given a full stop. The medical staff had been unable to fix me. I had not been cured and I had been given a full stop.

I started to volunteer at a DIAL (Disability Information and Advice Line) service and underwent a six-week training course to support my involvement. During the course I met a wheelchair user from the Greater Manchester Coalition of Disabled People (a woman with whom I am still great friends). She spoke about these 'models of disability' - the medical model and the social model. Hearing her speak, I suddenly started to put the pieces together. Up until that point, I saw my difficulties as entirely my fault: I must have done something wrong to end up this way. The hip replacements didn't work and I couldn't walk; doctors had tried to fix me but had not succeeded. This, I was told, reflected a medical model of disability. Hearing about the social model was a 'Eureka moment'. I realized that...