Spinalroots

Fourteen years ago I joined the ‘Heatherley Family’. I did so because I fell in love with the philosophy of the great man, Leonard Cheshire, who founded the organisation, and just as importantly I fell in love with the spirit of the place that is Heatherley Cheshire Home. I first came here for a six-week stay after an operation to mend my collarbone, which had been in two pieces since I broke my back over two years before. Until that time I would never have dreamed of becoming involved in a residential home for disabled people, but my life had been turned upside down and as a severely disabled person myself I had to reassess where I fit into life and what my goals and ambitions were. Not only did I find that I could relate to the residents of the home, but the togetherness with which the home operated was something that I’d spent most of my adult life searching for. I believe it is an intrinsic part of human nature to want to belong in community and something that in our time is sadly lacking for many of us. The communities of old, built upon the need for material survival, have long since dissolved and we’ve found ourselves a collection of individuals all trying to find our way in a society with little cohesion. The need to come together as individuals and find a new sense of community through love for our fellow man is present in us all, but as a recently injured disabled person, the need had become more pressing than ever. Heatherley Cheshire Home presented an opportunity to fulfil that need.

Three years to the day after breaking my back, I moved into the Lodge at Heatherley Cheshire Home. My mother described the cottage as virtually derelict and unfit for human habitation. She wasn’t far wrong and the garden was worse; a rat infested rubbish tip. The Lodge had been neglected because no one knew what to do with it, but all of this made it even more suited to me. I was in my element. I knew I could make a home out of the cottage and garden and put my skills to good use around the Cheshire Home as a whole. I saw a community that I could play an active part in, which in return, could give me the sense of belonging I needed and more importantly, the emotional security that comes with that sense of belonging. Slowly but surely I established myself as a member of the community and worked hard to play my part. My projects have been numerous and as well as the renovation of the Lodge and its garden, they include running a wood workshop for other residents, looking after the greenhouse, various garden creations and managing land with sheep and geese. However, I would like to think that it is not the material achievements that mark my successful integration into the Heatherley Family, but the daily interaction of my life with the lives of many other members of the family. The ways in which our daily routines bring us into contact and the little things we do to help each other along the way.

It would have been naïve to think that I was going to enter into a utopian arrangement where life was suddenly to become a bed of roses, but I never expected it to be such a battle. When I first came here, Heatherley was still governed by a voluntary body of local dignitaries, but the professional management of the organisation was rising more and more to the fore and was beginning to have a real impact on the manner in which people came together to make it a ‘home and family’. It is easy to understand why the role of professional management became so powerful, despite the fact that Leonard Cheshire bitterly opposed this fearing that it would make the homes nothing more than another National Health institution. Not only had the cost of running the home risen enormously but also government legislation had been implemented to dictate every aspect of how care was to be provided to the residents. Responsibility for raising the necessary funds and complying with the legislation had become more than could be expected of voluntary governors, even with a paid Head of Home and administrative staff. The buildings were starting to slip into disrepair and despite the excellent standard of care, regulation still had to be complied with, whether or not it was for the best. The manner in which Heatherley and the other Cheshire Homes were run had to change, however, I feel that the charity made a big mistake in how this change was implemented.

It wasn’t that a more professional management shouldn’t have been embarked upon, this was unavoidable, it was that in the process the whole notion of what a Cheshire Home is was lost. The Leonard Cheshire charity was originally a collection of residential homes both in Britain and around the world, but the charity branched out to provide support services to disabled people living in the community at large. I have no wish to comment on whether it was a sensible move for the charity to expand in such a way, but I would like to point out that this is a very different field and it was certainly not sensible to club it altogether in the same boat. As a result we at the residential homes have become the poor relation that has to fit into the charity’s new found notion of ‘service provision’, a notion that has no place in the Heatherley Family. There are many disabled people who live their lives independently in the community at large and manage to do so by receiving help in the form of ‘support services’. It is perfectly reasonable to consider this ‘provision of service’ and not unreasonable to consider those receiving this support as ‘service users’. However, to then consider that people in their own home should be referred to as ‘service users’ is incredibly insulting and terribly degrading.

All those at Heatherley come here because they find that their lives can no longer be supported in the community at large and they need to seek the security that can be offered by a Cheshire Home, whether it be full time care in the main home or supported living in a bungalow. I live independently in the Lodge, but I still came here seeking security, both the physical security of a suitable home set up that allowed my life as a wheelchair user to work and the emotional security that comes from the family, allowing me to find the strength I needed to rebuild my life. The whole point of a Cheshire Home is that it becomes ‘your home’ and the other members become ‘your family’, so that we may all support each other in the challenges we face in life. When the charity decided to make us its ‘service users’ they effectively stole our home from us and turned it into their business. We went from living here ‘by the grace of our dear President Pamella Farrell’ to living ‘by the mercy of professional management’. This approach by the charity has understandably had a detrimental effect on the life of our home and the lives of those that live here. People have become much more introverted and engage less and that wonderful sense of family that included relatives, volunteers and staff as well as the residents, has slowly subsided. Not only do I believe this to be a direct result of managerial policy, but also it seems that the charity has actively wanted this. Building community is not easy and doesn’t fit into the corporate business model, so by reducing disabled people to assets in a business the charity can get on with running a multi million pound venture and being a major employer, all of which seems to have become far more important than ‘enabling disabled people’.

Members of our local community consider me to be the epitome of a Leonard Cheshire success story. I have made a home for myself at Heatherley, working hard to pay my way into putting a roof over my head. I have also contributed enormously to the home as a whole and the lives of others that live here. I have pursued pioneering work in the field of spinal injury rehabilitation, making great progress in my own physical health. I help out on a voluntary basis at the secure children’s unit at the end of the lane and involve myself in the local social and pub scene. I am extremely grateful for the opportunity that the charity has given me. I love being a member of the Heatherley Family and have always got on well with residents, relatives, volunteers and staff, but unfortunately management have never embraced me and pursuing what is right and proper around here has always been a battle. Lately that battle has got harder. Our current manager has achieved much in improving the infrastructure of the site, however, the importance attached to the part played by the individuals living here seems to have diminished, leaving little scope for our involvement in enhancing the life of Heatherley. Consequently I feel that my efforts to work within the community have been viewed as a threat and I have recently found myself more and more isolated and excluded from the workings of Heatherley. I am no longer included in any discussion as to the development of the grounds and outside facilities that I have always taken a passionate interest in. My handcycle has been thrown out of the garage in the close bringing to an end a long standing arrangement that many in the close here benefited from and I am now being locked out of the workshop despite the fact that I own machinery in there that the maintenance department have had full use of for many years.

Good things in life are worth fighting for and what Leonard Cheshire, Pamella Farrell and others began at Heatherley is truly wonderful and despite the apparent resistance of management to the original philosophy I will not give up on it. I will continue, in my own small way, to work for the good of the family and pursue what is right and proper. I will not allow management to bully me and will not live in fear of whatever decision they make next. I will continue to live my life in such a way that I honour the grace bestowed upon me by being welcomed as a member of the Heatherley Family.