BLOG ENTRY 1: the reality of being a ‘service user’

BLOG ENTRY 1: the reality of being a ‘service user’.

Living with an impairment unfortunately has a dark reality and often my life doesn’t feel as lovely and shiny as I’ve made it sound.  I love my disability, I wouldn’t be me without it, but it also makes me reliant and dependent on public services to get through the day. There isn’t really an area of my life which I haven’t had to share with social workers, medical professionals or the benefits system. When push comes to shove, the influence and power that other people can have over my life is huge. ‘The system’ has the ability to try and tell me when I can leave the house, when I go to bed, what I do with what my day and who I live with.

For anyone reading this who isn’t au fait with the concept of ‘social care’, this is the process through which the local council assess my care needs and give me funding to ‘purchase’ my care. I use a care agency and employ Personal Assistants directly . I literally couldn’t live without their help. 

I have my own tenancy with a housing association based in London and I house share in a bungalow with other people. All sounds glorious so far?

As a disabled person reliant on the system, I’m increasingly struck by how ‘us and them’ it all feels.  I’m at their mercy, they have the power. I’m the passenger and the employees of the social care system are doing the driving. And sometimes I don’t even know where we’re heading!

However articulate, assertive (maybe even very occasionally obnoxious!) I try to be, I am still the ‘receiver of services’ and they are the ones that decide how much help I can have. As the public sector feels the squeeze more and more, this division comes into ever sharper focus. I am a ‘service user’. Regardless of anything else I try and do, I can’t escape this degrading title. 

As a ‘service user’ I experience being treated in a very particular way. I am meant to conform to decisions that are made by people who don’t have any experience of living with a disability, but who nevertheless feel they can tell me what I need and what I’m going to get from them. My dignity as a human being has been striped away with each convocation I have with ‘The system’. I am not allowed an opinion on who I house share with, so much so that I recently got accused, by my landlord who took delight in issuing a formal warning to me for breaching my tenancy agreement – for What, choosing who I live with. Some would say it’s morally right to consult with the people already living in the property, obviously I was mistaken!  In fact, I live in a world of secrecy: confidentiality rules the roost and is sometimes a trick used by the system to make sure I don’t have more say then they are prepared to put up with.  I am not kept informed about people wishing to move into the spare room, instead only given the date when they move in.  I can’t have a meeting with social services and the people I live with because our issues (which we all talk to each other about all the time!) are ‘confidential’.  ‘Confidential’ = the system telling me to butt out of the stuff they want to be in charge of because I don’t deserve anything else. 

I am meant to be grateful, I have a roof over my head and access to 24hr care.    At the age of 30, I crave to have my own space. This life is weighing me down.  If I were a non-disabled person, moving my life on that increased level of independence would be relatively straightforward. But for me, living alone = more cost to the state because it means I can’t ‘share’ any of my care with other people. In a climate of cuts, I have little chance of achieving this ambition. 

I am having my needs reassessed at the moment and have already heard that living alone is not my ‘assessed need’. But what is it that they mean by ‘assessed need’?  Is it giving me the most basic of care just so I exist and keep ticking over, rather then giving me any quality of life? It certainly feels that way. 

So instead I am forced to live within my ‘assessed needs’: sharing my care, living life in close proximity with others. It feels invasive and there’s little room for privacy. 

I find it really difficult to find my place in the world, as simultaneously a ‘service user’ who is dependent on public services to live my life, and holding on to being the person I want to be. When I leave the house I feel a place in life – I have friends, I do things which feel meaningful and I feel valued. Then I go back home and I feel cut off and dependent.

I’ve had some fantastic support workers and personal assistants, many of whom have become life-long friends. It’s amazing how you can forge a strong bond with people who start out as complete strangers. We’ve had some great experiences and made some unforgettable memories. But at the end of the day, these people are paid to be with me. I am another reason to justify the existence of the care industry; a kind of commodity – if the money stopped flowing, who would stick around? Outside of family and friends (who live all over the country), when you are dependent on others for so many things, you find yourself asking yourself this question uncomfortably often. 

Even the language used by the sector highlights the differences between us. Rather than being human beings who co-exist and – in my case – have some extra needs – we live in a terminology based world of ‘support workers’, ‘residents’, ‘members of staff’ and ‘personal assistants’.  Society is obsessed with labelling things and every label makes the divisions between us greater. 

I’m also expected to share my most intimate details with various ‘practitioners’ and ‘specialists’, the lanyard around their neck (and maybe a DBS check) giving them licence into the stuff that for most people is in the ‘you don’t need to know that’ box. On the other hand I would be ‘crossing a boundary’ if I knew the slightest about them. This is an uncomfortable power dynamic which makes me feel unequal. 

As I feel this happening more and more, I’ve decided to take control. The system is there to help me, not to belittle me. Enough is enough.