top of page
  • montanafillingham

De ja Vu and Paperwork

I never realised how hard it was to be disabled. That may sound like the most obvious statement, because of course living with any physical or mental ailment is hard right? But I don’t mean living with the actual disability; I mean living as a disabled person. You may think I’m splitting hairs but let me explain...

I never realised how hard it was for disabled people to access the support they need. The paper work seems like an endless cycle. Hang on haven’t I filled in this form before? I mean it’s all the same information I’m putting in, and the form is going to the same place… why do I need to tell these organisations the same thing over and over. And not just tell them but PROVE it. Dance Monkey! Dance. There is no room for pride in such a circus. Endless streams of evidence is needed. Going round in circles like Dante's inferno.

Bank statements, (inc each account you or your partner have with any bank at any point in the past 2 years, plus any and all credit agreements with stores, catalogues, loans companies, banks, building societies, bonds, property etc).

Doctors letters, (and complete access to your medical notes and reports, and the names of any specialists involved in your care plus your regular GP who we will most likely contact, and is the least likely to know details of your actual requirements, and even then we may write to you and ask you to arrange an assessment with your specialist/s and get them to fill in a form that most likely does not allow for detail or the specifics of your case).

Finally if you have managed to secure any help from the government we want you declare that too with the amounts you receive each month for each component and all inhabitants of the household.

… And if you can read that in one breath without passing out you must be part amphibian!

You go through all this and then are told ‘you are not eligible due to x,y,z’ or ‘you’ve filled in the wrong form please complete form108.2 in stead’ or… if you are really lucky… ‘congratulations we have calculated we can give you the £7 of your £87 rent… but hey we’ve just found you a more suitable house though, so once you’ve moved we’ll go through this again.

Obviously I have exaggerated here, and lumped all the different organisations into one mould, which may be a little unfair. Some are better and more compassionate than others, but you know what? Overall… as a summary… I don’t feel I’m far from the mark. It makes you angry, frustrated, upset, whilst you feel exhausted, sometimes belittled, embarrassed even, and when you express that you get a load of empty sorry’s and ‘I understand this is frustrating’, but god-forbid you lose your temper… after all they are just doing their job! And I know that, of course I do. It’s not them specifically. Still, there is a ‘they’.

‘They’ seem to feel that somehow you want to be off of work, you want handouts, you want it easy, you want your hand held - and we all know, ‘I wants never gets’. No! I want to be independent, I want to be free of your system… but I just need a bit of help right now. In these modern times we are told it’s okay to admit you need help – just don’t ask for too much, and don’t expect to get it... But goddamit I do feel entitled to, at very least some compassion, some bloody human decency, and you know what? I feel okay saying that. Inceasingly there are people who in my opinion feel entitled to too much – especially in the NHS. I’ve had patients who seem to think hospital is short for hospitality. It’s not a hotel, and unfortunately those well enough to feel entitled to more, in my experience, are the ones who should be well enough to manage alone. The ones that really need help often suffer in silence, and if by some chance it is recognised they need extra support, community services are so stretched they can’t yet go home. If they can they will struggle while on the waiting list of some underfunded outpatient service.

I’ve put in to society my whole life – charity work, volunteering, a job since I was 16, training as a doctor, being a doctor – though given I’m only 27, but the thing they are failing to see is that as soon as I’m able I’ll be putting in and contributing again. I don’t want charity and I don’t need pity. When I’ve complained to some of those close to my story, I get different responses. Usually disbelief. ‘They expect you to live off what?’ ‘They expect your fiancé to help you care for yourself every day and work full time?’ Yes they do. Yes they do.

I knew it way before now, but informal carers are the heroes of the modern world. I’ve known my mother be that, first to my gran, later, my granddad, and I looked on in awe at how she kept going. How she could give so much of herself to her family and to her work, sparring very little for herself and her own health problems. Pain, which she would take on to make sure those she loved were okay. Now, in a cruel twist of fate, I see it from the perspective of the one needing care. I mean I don’t need much help, maybe 65% of the time, and it gets less with each positive milestone I reach. Each day I can do a little more, when it’s practically possible, and hell, in public I paint the picture of the independent young doctor, who nothing will stop. Behind closed doors though I have bad pain days, when the hurt makes me grizzle and I don’t want to move. I force myself but still can’t quite find the reserves to put my own shoes on. Bad bowel days, where I’m too worried about shitting myself to go out the house. Infections that knock me flat, and my whole body is stripped of energy as white blood cells try and force the demon out. Or just plain simple bad days, where I’m too in my head. On days like these, my fiancé, tired from a night shift of walking miles of warehouse floor, picks up the slack; takes the bad tempers, the tears, and the frustration that makes me pick at flaws in everything; then helps me more than I would have ever asked him to, often without any praise or recognition.

Recently the worst of the bunch has been the insurance companies. I’ve never felt so palmed off in my life. They put you through so much.

Prove this. Swear that. Give us access to this. Get this form signed. Sorry we actually have to outsource you’re claim. I’m sorry but you don’t count as permanently disabled. What even though I will need a chair for life? Yes even then. Okay how about loss of limb? I’ve lost use of both legs. Well you have to prove it’s permanent, so get back to us a year later.

A year passes and ‘hey remember me?’ Oh you actually got back in contact. Well yeah I paid for this cover and I haven’t been able to work in over a year so… Okay well fill out this form… Oh sorry that you ‘most likely’ wont recover doesn’t mean you couldn’t. Okay fine! I’ll contact you again after my next assessment….

A while later and ‘I’m back! Here’s you’re new form confirming my prognosis.’ That’s great but hey we’ve just realised you should never been outsourced to us. Sorry. Not sorry. Bye. And we are back to square one.

The definitions change and suddenly not having working legs doesn’t matter, as long as they are physically attached. They are hunks of functionally useless meat, but hey you still look like a full person!

But you’ve messed me around for over a year and now I’m pissed off. Okay well how about a £100 to forget all that inconvenience and worry, and worst of all the hope of decreased financial burden? I’ll take what I can get but I’m still challenging this ‘they have to be physically gone’ crap. That’s your decision to persue but we wash our hands of you. K. Later. Bye.

They want you to give up, and at times I think I just might; because my days are currently consumed in paperwork, when I just want to get on with living my life. I want to direct my attention to my career, my marriage, my life goals. The pain, the infections, the decisions about managing any part of my physical life is exhausting enough. I have nothing left to give. The paperwork takes me away from my loved ones, it takes me away from trying to relax, it diverts my time from studying and writing the book, it is taking up so much space in my brain.

Some days being disabled feels like a job. So much so that wanting to go back to work is something I seem to be financially punished for, not encouraged to do. It makes me wonder though. How bad off do I have to be to be considered as needing help? Then sadly I realise that if I need to be so much worse off to get help, imagine how many people must be in a worse position than me, that requires you to have to work so hard to get a slice of that help. It makes me think that I have a lot to be thankful for, and simultaneously realise how much we as a country are failing our fellow countrymen and woman. It makes me so sad I try not to think about it. I try and take comfort that I’m not too bad in the grand scheme – it’s just hard to feel that in your own little bubble. Sometimes as much as I hate to admit it, it makes you angry at people who have a seemingly fully functioning body, and yet they don’t contribute. I don’t believe in terms like ‘scrounger’ etc although I know people who recite such rhetoric, however I know of people out there that from the outside fit that bill – but you never know there reasons or situation; I will recognise here there are silent disabilities.

Still it makes me mad to see a good pair of legs go to waste, or a brain that has never been stretched to potential. An infectious apathy of, ‘why work when I can live off of others?’ A constant war of those content to be a parasite, and those who wish to fling off the symbiotic existence and contribute, so others may benefit from the system... but they just can’t yet. They aren’t strong enough or fully adjusted to new circumstances yet. I really hope this translates and my meaning isn’t misinterpreted.

Sometimes being disabled you also encounter ignorance. Some is a wilful look in another direction, but mostly not. People who haven’t known someone with my needs, do not know what I go through, what I need or how to deal with my limitations. What they do not know scares them. They are scared to ask. Scared to even think about what your daily life entails. Scared to try and see past the chair, and recognise their same old friend simply sat down – all be it permanently. Then there are also those who are scared of being responsible for someone technically ‘vulnerable’. So many times I’ve been passed round different companies, or branches of companies, all determined I am not ‘their’ responsibility. For example the 15+ phoncalls between 3+ companies and organisation, while I was stuck in the lift between the floors of our accommodation for 3 hours… before finally being told to call the fire brigade and having 4 fireman scratching their heads to try and get me out of the contraption. They end up doing the same thing my fiancé wanted to do from the start, stopped by my fear of being held ‘responsible’, if it went wrong. God only knows that taking the responsibility quickly gets you blamed. So I guess I can understand why ‘they’ hesitate, but it’s a bit different when it’s your job to be the responsible party, and are likely protected by the company you work for to some extent. My faith slowly dwindles.

Then I have to fight to get the lift fixed or be banished to sleeping on the sofa, not being able to shower, and having to do bowel care in the same room I eat and drink. Needless to say I am glad I have now been allocated a property more suitable. Also, I must say there has been a few shining lights among the many corporate robots. A council man and housing officer that appear to be human, and not the reptilian big dogs, or scared turtles of workers, retracting their heads from the chopping block - because they have a life to support too. The balance between being understanding and becoming bitter, and demanding everything be sorted. He who screams the loudest! Etc. I don’t want to scream at people just trying to keep their own bank balance dipping into red.

So yeah the past few months have been maddening. Skipping between seeing the end of small paths on the horizon; I’ll have my car soon – but soon becomes weeks, becomes months and finally the goal posts don’t just move, but are dug from the ground – this car actually wont be any use to you… back to the drawing board. On the up side though here’s a potential new home we’ve found you, oh you need some small changes? Um sure we can do them, but maybe not, but maybe, but… we’ve done it so boom you’re moving. You need help? Sure thing, you just need to complete this form and submit it with evidence and you’ll have a decision of how much we can help you… when?? Soon. I have at times been drained of my very will. They have indeed been days that have felt like giving up. Refusing to leave the refuge of bed. Burying myself in menial tasks to take my mind off all the things I need to do. The chores I must ask others to do. The decisions I have yet to make; that I’m putting off because I don’t know or because it seems impossible, or maybe just because I don’t have the energy today.

The only things I know are I can’t give up and I refuse to become bitter. The other thing I know is I need a break.

10 views0 comments

Recent Posts

See All


bottom of page