To cut out any suspense, the outcome of today’s Upper Tier tribunal is that the judge reserved judgement until next week. My gut tells me that Hillingdon will win – for all the wrong reasons but they will still win.
It was exhausting, horrible, non – sensical, the epitome of everything that I normally write about.
I was thrown right at the beginning. For two reasons. Firstly, I had a representative from Housing and Support Alliance with me but she was not allowed to speak. Hillingdon brought a barrister with them, who not only was allowed to question me but was also the person who presented Hillingdon’s legal argument. There was no way that I could compete on that level – I dont have the experience, the knowledge or the language. It was a stark reminder of the damage done by the Legal Aid reforms – the waiting room was packed but I don’t think a single person there had any representation with them. But of course, the state, Hillingdon, could afford full representation from a barrister. The odds were hopelessly stacked against us before we even set foot in the courtroom. The second thing that threw me before we started was being approached by the housing benefit manager just as we were walking down the corridor to the courtroom and him telling me that the housing manager who has been in charge of arranging Steven’s housing is now on leave for three weeks. The timing was awful and for the first five minutes of the hearing, my mind was elsewhere. But I guess that was the point.
I liked the judge. He seemed empathic and he gave me lots of time to try and present my argument. But it was clear that he was trapped by Hillingdon’s use of the law. However, as my rep pointed out, this was the Upper Tier, so he can set case law if he feels so inclined.
In a nutshell, the regulations state the marital home can be disregarded as available capital if it is occupied by a Partner; or a relative who is incapacitated. It further states that the home can be disregarded if it is occupied by a relative of a member of my family.
Hillingdon’s argument which seems to be supported by law:
1. My wife is no longer my partner as we are living apart (albeit that we are living apart because the council told us that we had to). We spent over an hour batting this one around and at no time was there any acknowledgement of the realities of a relationship with someone with serious mental health problems. For example – “You are not partners because you dont do things together socially” But that was the case when we did live together because my wife was usually frightened to leave the house.
2. My wife is neither a relative too, The HB guidance gives a very long list of people who are relatives and include: my brother in law, a non blood uncle but a wife is not included as a relative.
3. The last one really sticks in my throat. My wife is Steven’s mother, so they are relatives but Steven is not a member of my family because he is over 18. No account whatsoever is taken of the realities of the home life of an adult with severe learning disabilities.
So if Steven is not a member of my family, who is he? Who am I? Who is he when I cook his meals. Who am I when I wipe his arse? Who are we when we sit on the floor acting out Basil and Manuel? I bet the social care world would see this very differently if I said to them – okay, Steven is not a member of my family, therefore pay me like all the other non family members get paid for all the caring work I do. When Steven eventually gets his flat, I won’t be there as his father – I’m on the forms as his “live in carer” – okay, dismiss the family relationship and pay me as a live in carer. It won’t happen of course because in this Orwellian world, people can be family or not be family whenever it suits the suits.
I only had to satisfy one of the criteria – not all three. But in their eyes I failed in all three – my wife is not my partner, my wife is not my realtive and Steve is not a member of my family.
Basically, it was same old, same old. Like social care law, it has this weird assumption that people exist in complete vacuums. Relationships are defined in the strangest, narrowest ways that bear no relation to real life.
I came unstuck several times because I dont speak the language. Hillingdon’s barrister kept saying; “I put it to you Mr Neary that you and your wife are estranged, with or without disharmony. Would you describe yourself as estranged without disharmony?” I wanted to say, that I have never used or thought in those terms ever in my life. All I could do was describe the relationships as it is but I could see that it didn’t in any way resemble the boxes I was meant to fit into.
I do not talk about or think about my relationship with my wife in the terms of the housing benefit regulations. i do not talk about or think about my relationship and life with Steven in the terms of the social care language and framing. And that is what is so dangerous about this stuff – you get pulled into it by people who have to see the world in and from that frame, even when it bears no resemblence to your world. I said at one point in the hearing that I wanted to present a narrative of my relationship, in my language, from my phenomonolgical experience but I wasn’t allowed to do that because my world was too alien to the housing benefit world. I started to talk about my strong sense of duty and responsibility to my family but stopped because as a concept, it couldn’t fit into their frame. I sounded pompous and laughably old fashioned. I tried to talk about the pain and shame I felt (feel) about chosing to care for my son over my wife but was stopped in my tracks. In that world, relationships are about having joint bank accounts – not about the emotional element of being two human beings in a relationship. I had an ironic forebearing of this a couple of weeks back. Steven had been asking for some photos from the old home and my wife brought a big selection over. She also brought a new photo album. But the album would only have held about a quarter of the photos. That’s what it felt like today – trying to fit my whole experience of life with my wife and Steven, into a very small album.
Halfway through the hearing, I had a strange, almost altered state moment – it certainly felt that I floated above the room and to be honest, I never quite came back to the room after it. But in that state, I heard three very clear statements:
* “I am so very very tired”
* “What the fuck are you doing here in this nonsense?”
* This has got nothing to do with either you or Steven”
From that point, the hearing seemed to have less and less to do with me or Steven but it felt like being in some sort of play – a drama that was being played out in which I had no role or connection. In exactly the same way that I’ve written about my social care experience being all about the self serving system and nothing about the clients, this had a similar feel. Bottom line – it didn’t feel like it had anything to do with the real life of people.
Coming home on the tube, other thoughts rose up. One came along in capital letters – “GET OUT”. Do not put any more energy into this misconstructed system. DO NOT ENGAGE WITH IT.
This is easier said than done, especially at this time when we need housing and a social care package. But there must be a way that a normal human being can have those things without engaging with this hideous system.
Perhaps I need to completely re-examine my values system. Being responsible to others and being accountable for my actions was something that was drummed into me from an early age. But in the world I was in today and the social care world that I’m in every day, that doesn’t even exist as a concept. The whole chaos that culminated in today’s tribunal started with the the council’s ultimatum to me to leave the marital home. The whole current mess with my furniture came about because they promised Steven social housing by 15th August and have now pulled the rug. But there isn’t even a sniff of accountability – it’s like the text is “we can do anything and the consequences are your responsibility”.
One other thought pops up in response to that question – “This is where the Steven Neary Foundation comes in”. I need to clarify that but one thing I do know about the Foundation is that it will be straight forward for people who yearn for things to be straight forward.
It must be possible.