I was an interior designer, artist and architect. I ran my own business. And now I am not able to move at all. I’m 33, and I’m tetraplegic.
Before my disability, I made most of the art on the walls in my living room. And I made the chairs, I made this sofa, I made that chest of drawers, I made that silly dog and the lights and the cable coming out of its bum. I’ve gone from being quite a successful artist and designer to being called a scrounger and even a ‘demon’ by strangers in the street – and that’s when I can get out at all. Because being tetraplegic isn’t my only problem.
Brighton & Hove Council have me trapped in a second floor flat. I had to move in here, against the advice of my doctor, since the council threatened me with street homelessness if I didn’t move into the property. It’s gone from where I could just about walk, to this. And I’m just going to get worse.
I’ve lived here for five years. The only accessible alternative accommodation the council have offered me is a homeless hostel notorious for drugs and violence. I don’t understand. What have I ever done wrong? I paid my dues. I paid my taxes on time, and did so happily because I thought the money would help vulnerable people in need, like I am now.
My health problems began in 2010. First my knees started giving out. That progressed to falling down stairs, passing out, having seizures and experiencing numbness in parts of my body. Then, after several comas I became classed as paraplegic in 2013.
I couldn’t walk, I couldn’t feel my legs at all. I started having issues with cardiac arrhythmia, I was diagnosed with fibromyalgia in 2015, then in the last year I’ve been diagnosed with Functional Neurological Disorder which is a very complex, progressively degrading condition.
My current state could be maintained with the right rehabilitation. But the hospital has just delayed, delayed and delayed because where I live is totally and utterly unsuitable. It costs a hell of a lot of money and they’re not going to try and stabilize my condition only to bring me back here to degrade even further.
Half of my degradation is down to the way I have to be manhandled and pulled around the room. I’m not sleeping in a bed. I’m sleeping where I’m sat now, on the sofa. The only time I move is to go to my hospital appointments. I go to hospital, I come back again; I sit here, I stare. That’s all I do.
It takes up to 2 hours to get down the stairs because I cannot physically move myself. I have to be taken down one step at a time. My legs are moved down then pulled downwards, each of the 28 steps at a time. I have an 18-year-old carer, Reece, five days a week for about 10 hours each day. He is amazing and he does his best. But I’m making him ill. This is too much for one young man. How he even handles my weight I don’t know.
On his days off, I do nothing. I sit here and stare at the telly. That’s all I can do, sit in my own mess and hope that my urine bag doesn’t blow up.
Just because I’m disabled it doesn’t mean that I’m not the same as everybody else. It sounds ridiculous but to be able to wipe your own ass is a massive thing and people don’t realise that until they lose the ability to do that.
I don’t think the council will find me suitable alternative accommodation. The longer I stay here, the more I decline, and the sooner I will die, I guess.
The government is saying there are no Daniel Blake’s, that it’s not a true story. Say that to me. Say that to the four disabled people I know who have died after being sanctioned by the Department of Work and Pensions’ outsourcers.
By chance, I found out the Home Move team haven’t received any of my medical information since February 2015. I’ve been in the wrong mobility classification for months.
I want my social worker to pass on my medical records to HomeMove and senior council officers. There is written evidence that the independent professionals associated with my case are frustrated and angry with the lack of progress.
Access request disclosures of internal correspondence reveal a series of mistakes that, instead of being rectified, have led to a merry dance of responsibility dodging.
They prove council officers are misleading councillors; while seeking to pass the buck back to me by presenting my refusal of the drug-ridden homeless hostel as me making a choice to live in my current state.
I’m not far away from Southampton. Where Capita subcontractors are being paid £200 per disabled person whose benefits they cut. The council are guarding the gate so aggressively in Brighton & Hove, that it feels like heartless private companies have taken control here too.
Accessible accommodation would allow me to live a dignified life. I have the use of my right hand, I could work an electric mobility chair. Since I live on the second floor of a flat without a lift, however, I will have to content myself with being dragged
Words By Mattha Busby
