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 the problems I had encountered (missing education, not being able to secure employment, being made redundant from the health authority with no appeal or fight, problems with housing adaptations) were not my fault; they were a result of society’s inability to accommodate me as a physically impaired wheelchair user. I felt as if I had fallen asleep in one world and woken up in another. The medical model glasses through which I viewed the world had been replaced by social model glasses. One life for me had stopped and this new life was opening up; just as if I was emigrating, I needed to do my research about this new world I had come into, this social model of disabled Helen. It was a new language, it was new values, it was a new world. I finally realized that my illness and impairments played only a small role in my daily challenges. It was the barriers imposed by society that truly disabled me, and, in the 1980s, the most challenging of all of these were other people’s attitudes.

It was suggested that I go on a disability awareness training course led by the Disability Coalition, and I revelled at the chance to learn more about this new world. Eight people were there, all training to become trainers for the coalition. The excitement of the new social model world, however, became complex and confusing. As the training programme developed and I heard the views and perspectives of others, for the first time ever in my life I was ashamed to tell people what job I had done. I realized that a lot of the people who were involved with the training didn’t see healthcare workers in the same light as I did. We had one or two lively discussions about healthcare and health professionals’ attitudes – but I had been a healthcare professional! It was then I realized that the social model carried with it a great deal of responsibility. I also realized that people with acquired impairments, especially people like me who acquired increasing impairment over a period of time through childhood and into adulthood, often had different experiences from those with impairments from birth or early childhood. I sometimes found it quite intimidating being around people with very strong views on the social model, and at the end of the training I didn’t sign up to be a trainer for the coalition. I didn’t feel comfortable. Life – my life – wasn’t black and white; there were and are many shades of grey.

Since that health and care pathways leaflet came through my door, there have been numerous legal and policy changes. For someone who doesn’t take a lot of notice of policy and law, I have to say I really started to notice changes after the Disability Discrimination Act came into force. People may think of parking and accessible toilets, but for me it was transport. I remember travelling on a train in the guard’s van. You couldn’t travel on a train in a wheelchair, so I was in the unheated guard’s van. I remember sitting near the window, waving out so I wasn’t forgotten and taken to the wrong place! Now I can sit in a train in a proper wheelchair space and travel comfortably.

Later in life I began delivering training on the Disability Discrimination Act. I had great hopes for the Act and thought it would help bring down barriers. I also thought it would help me find a job and receive realistic welfare benefits; however, it hasn’t done any of that. It is the cheap and the superficial that has been addressed, not the majority of barriers. As a wheelchair user, I still can’t get into half the shops in my town. I’m so disappointed, because I really had big hopes.

Life as a disabled adult

I was in my mid- to late twenties by the time I had undergone the unsuccessful hip replacements and my hip joint was removed. At this point I recall being visited by a social worker. He queried why, following the surgery, I wasn’t moving back ‘home’ to live with my parents, so that they could help me. I hadn’t lived at ‘home’ for some years at that time. Why would I want to sell my house now? I hadn’t considered this. The social worker felt it would be so much easier because my parents ‘could look after me’. I felt that I was being seen as the ‘perpetual child’ in being asked to consider such a move; throughout my life I have met other disabled adults who have been encouraged to stay at home with parents or return to live with them. I feared that I’d never get the chance to grow up (what I term ‘Peter Pan syndrome’) and that I’d have limited experience of good and bad things. Everyone thought that what I had gone through was bad enough – but we all have to go through bad things and difficult experiences. They make us who we are; they have made me who I am. They haven’t taken away from my life, they have added to my confidence. I’m far more self-assured about what I believe and what I stand for.

I remained living in my own home and the social worker facilitated access to what is now called a Disabled Facilities Grant (DFG). The outside toilet and coalhouse were converted into an accessible toilet and shower room. I was also issued with a raised toilet seat and a perching stool and advised to purchase two ‘helping hands’ to enable me to put my stockings on. No more sitting on the toilet with the door open, no more washing in the sink with just a net curtain between the outside world and me! But the equipment was all so clinical looking: white rails that didn’t go with the décor, halls cluttered with medical equipment and supplies. My home was important to me, as was its style. As a woman, it was important to me. But I’d discovered that DFG funding didn’t cover personal choices relating to décor when it came to equipment, which was to meet my professionally identified needs.

While I now associate my dissatisfaction with the equipment with gender issues, it was really only after I started going to the Greater Manchester Coalition for Disabled People (GMCDP) and met other disabled people that I became aware of unsettling issues around being a woman with a disability. Even deciding on a term for myself was confusing. Was I a disabled woman, a woman with a disability or, as before my disabling event, still a woman? I began to research the women’s movement and to feel that, because of my impairments, I wasn’t a woman anymore. Would my impairment prevent me carrying out my ‘womanly’ roles and functions (wife, mother and partner)? I began to feel that it meant that I should not have children; doing so might run the risk of their being removed by social services.

When I sought help from the local hospital for treatment for my endometriosis, I went in my wheelchair. The consultant told me that getting rid of that ‘monthly mess’ (my period) via a hysterectomy was the much better option and would give me a much improved quality of life. I was just thirty-five years old at the time, but the ‘expert’, the consultant, made me think this was the best idea. It was only afterwards that I discovered that a friend, with no physical impairment, also met with the same consultant for the same health problem. She was offered a raft of hormone treatments and, when she asked about having a hysterectomy, she was told that this was the very last resort for someone of her age; she was forty-two.

I remember talking to a disabled friend about these experiences, and she suggested I should read the work of Jenny Morris (cited in this book). Her work opened my eyes to so many issues and highlighted how certain models of disability had robbed me, and so many disabled women, of our status as women.

Positive social work practice: my perspective

For me, best practice has always been centred on positive relationships. Social workers who took the time to build positive and sustainable working relationships were those I valued the most; inevitably, they were also the ones who were able to secure positive outcomes with and for me. Social workers need to build relationships that are founded on genuine care and compassion, trust, professionalism, and excellent communication skills.

Genuine care and compassion I value social workers who create an atmosphere of care and empathy, not sympathy and superficial kindness. Social workers must recognize that I have knowledge, skills and expertise in my own situation and work in partnership with me on equal terms. In my experience, such approaches have not only secured positive outcomes but also built my confidence. I need to know the social worker will act as a strong advocate for me, or support me to advocate for myself, in order to promote and protect my human rights.

Trust During contact with social workers, particularly through assessment processes, I have needed to share private thoughts, very personal information, my fears, and my concerns. In order for a social worker to enable me to share this information, I need to know that they will protect my right to privacy and maintain confidentiality appropriately.

Professionalism I do not equate professionalism with unnecessary formality but, rather, with appropriate confidence in role, suitable appearance, and honesty. I always welcome positive eye contact, a pleasant demeanour, a smile. I want up-to-date information and social workers who are knowledgeable; it doesn’t matter to me if they have to check information on the computer or ring the office, provided what they tell me is the truth. Recognition that I am a source of knowledge and expertise on my own life must not lead to assumptions about what I know about social care systems: sharing and exchanging knowledge is key to an equal social worker–service user relationship.

Communication skills Social workers do not need good communication skills; they need outstanding ones! I recall one less than positive experience during a social work assessment in which I felt ‘talked at’. There was very little inclusion in the interaction, which involved questions of a personal and emotive nature. I needed time to think, reflect and consider my responses; however, while I was considering how to respond, the social worker was already writing something down, smiling, as she said, ‘I fill hundreds of these things in. I’ll read it back to you at the end.’ There was an immediate sense that ‘this is how it was going to be done’. I felt I had limited options to alter things once the assessment form was filled in and signed off; time was short and she needed to get back to the office. This approach led to some unhelpful and awkward exchanges. For example, following a question about my personal care needs, the social worker said, ‘I can see that you are on your own at the moment, but do you have a man friend who can help out?’ I responded, with some frustration, ‘I might well have a “man friend”, but I am not going to ask him to help me get washed and dressed!’ ‘Oh’, she replied, ‘I didn’t mean like that. I meant going out socializing.’ I reminded her that we had been talking about personal care, but she was already moving on with ‘her’ form. Assumptions have also been made that, because my impairment is physical (and visible), I have no particular communication needs; not once in all my years of having contact with social services and social workers has anyone asked about my dyslexia and the resulting difficulties it causes me with the written word.

Concluding thoughts

I am woman with physical impairments. These impairments result in some restrictions and sometimes cause me pain and discomfort. I am also a disabled woman; physical barriers, attitudinal barriers, social and economic barriers have all disabled me in the past and continue to do so. I am also a Christian, a niece, a carer, a qualified radiographer, a friend, a theatregoer, a home-owner. I value social workers that see me as this person, not just as a list of medical conditions and limitations. I value social workers who recognize that my need for their involvement is not always related to my physical impairment. And I value social workers who protect and promote my rights – not just my rights as a user of social work services but my fundamental human rights.

Suggested further reading

Beresford, P., Croft, S., and Adshead, L. (2008) ‘We don’t see her as a social worker’: a service user case study of the importance of the social worker relationship and humanity, British Journal of Social Work, 38: 1388–407.

Evans, C. (2008) In practice from the viewpoint of disabled people’, in Swain, J., and French, S., eds, Disability on Equal Terms. London: Sage.