When Your Superpower Is Being Invisible: Lived Experience of Disability
This is in no way a bash the NHS, or the hardworking social worker’s piece, this is my lived experience of invisible disability, the services who are working to support me. And the ways that they don’t quite work in the way that the Social Care Institute of Excellence had in mind. An invisible disability is a life-altering condition that is not apparent just by looking at someone. Guess what? This covers 1 in 7 of the UK’s population – so we are everywhere, you just don’t know it, because our superpower is being invisible.
Do you know that disabled people have multiple hoops to jump through every year, to prove that they still have their disability and are entitled to their funding? Their doctor, social worker, caregivers, support workers. and therapists all need to comment on the person’s condition, even if they have only seen the person once or twice (or not at all) during the last year. Whilst they hope to maintain their entitlement to their personal budget (sometimes called Direct Payment) which pays for their support and care, social services work hard to reduce these budgets wherever they can.
Wait you say, I am not disabled, nor is anyone I know, so why is this relevant to me? Because, if you know more than seven people chances are there is already someone in your life living through this, and we want you to know what person-centered care feels like.
According to the SCIofE website ‘Person-centred care moves away from professionals deciding what is best for a patient or service user, and places the person at the centre, as an expert of their own experience’. Or in basic speak you the individual know your own life best, and professionals need to listen to this when suggesting treatments, interventions, or solutions. This means that during the annual review of your personal budget you can be heard in explaining what needs have changed, which have not, and what support you need.
Getting a personal budget requires a referral from your doctor or mental health team to social services. Who then do an assessment of your difficulties, referring back to your doctor and care-givers. A schedule of your needs to live as independently a life as possible is put together, and a budget is given for how many hours a week you need support to achieve this. However, this will never cover all your needs, and social services encourage social support wherever possible. Someone with many friends and family members is expected to rely on them for appropriate support, where this is unavailable a gap in provision exists, sometimes this gap is a chasm.
But don’t make the assumption that a personal budget was offered to me – far from it. I originally heard about PB’s on a Radio 4 programme, but my consultant said he had never heard of such a thing, and referred to me to social services, they advised me that my consultant had to make a referral (which he could only do during an appointment). He continued to deny all knowledge of the system, and this continued back and forth for three years. Eventually, I employed a private advocate, who recommended a specialist solicitor, and she was able to use the Care Act to help me get the recommendation I needed from my consultant to be assessed by social services. They went on to create and fund a 60 hour a week care plan for me.
Now, you may be thinking that I have explained myself quite clearly so far, and so you cannot see the need for an advocate. I wondered this myself, but the real reason is that the principles of person-centred often don’t translate to real-life situations.
I am a (usually) articulate, intelligent, middle-aged author of two books, a writing mentor and speaker, who just happens to have a severe invisible disability. Despite my achievements and qualities, there is still a need to employ an advocate and a solicitor to get my voice heard by the agencies tasked to support me. We have often found that during meetings my answer to a question is looked on with confusion, only to be repeated by my advocate and fully heard. Frustrating? Oh yes.
My condition is a relatively unusual one, which is why my diagnosis at age thirteen was an incorrect one, it was a private specialist who correctly diagnosed me aged thirty-five, and goodness that was a relief. Reading about my condition, seeing myself reflected in the pages, finding out that it wasn’t my lack of effort with the techniques I had been offered, but that my brain worked this way because part of it had been damaged. I did ask at that time to see the consultant who had diagnosed me (especially as we had never actually met) but was told that I wouldn’t be allowed to do this. It took an internal team shift two years ago, to be able to see someone senior enough to correct my diagnosis. Was I being listened to in this process? Was my lived experience being heard? It was not.
The other reason that I need an advocate is because of the pre-conceptions that social services, doctors et al come with. I am my file first, a cost second, and a human being third. Anything I do is inevitably seen as inspirational. Am I inspirational because I have done things that you would not feel able to? If that’s the case then you inspire me because you can go leave your house and drive your car to the shops, you amazing thing you.
But there are people in all areas of my life who take me on face value as the human being that I am, who listen to my points of view, who recognise me as someone they can get answers from, and someone funny, scatty, impatient and stubborn and all the other things that I am. None of those people are within the social services system. My personal budget my lifeline, the sixty hours a week I was awarded six years ago have helped me go from a housebound hermit who hadn’t been to a clothes shop or café comfortably in years, to being able to eat out in a café, visit a library, go to my graduation ceremony, become a published author, go on a book tour, go on a public speaking course, take a holiday. Without my personal budget and self-employed support team, I can do none of these things, and should my budget be cut (as it is threatened to be every year), I have no doubt that I would become housebound once more.
Following on from the piece by Helen Sharpe ‘it’s about abilities not disabilities’ when I mentioned to my latest social worker that I am happy with my life the way it is now, her silence was incredulous. When I went on to explain that the way I see it there are things that you take for granted that I cannot do, but there are things I have done that you wouldn’t have the confidence to, so what’s the difference? she didn’t reply, but I already know the difference, she is the social norm, and I am not.
References
Social Care Institute of Excellence
https://www.scie.org.uk/prevention/choice/person-centred-care
‘It’s about abilities not disabilities’ Helen Sharpe, Everyday Magazine
https://theeverydaymagazine.co.uk/opinion/its-about-abilities-not-disabilities
Written by Eden Gruger
den Gruger is the creator of Out of Your Head and Onto the Page, a set of down to earth masterclasses that answer all the questions, and worries you may have about writing, publishing and marketing your own book.
She also writes collections of short stories inspired by real life events, in the humorous, candid, occasionally tragic style the women might use to speak to their closest girlfriends. Down with Frogs shares those awful frogs that you have to kiss before you find your prince or give up looking stories. While Laughing at Myself reveals all those times that life conspires to make you look like an idiot and you wonder if you’ll survive the embarrassment.
When not working Eden spends her time in her garden, on her allotment and enjoying her dogs.
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