Rightful Lives: The Meeting

It’s been a topsy turvy few weeks for the Rightful Lives exhibition. The constant, daily attacks by just one person have been incredibly wearing but this has been more than compensated by people’s contributions that arrive on a daily basis. I just want to burst into silly song when I see how people, without ego and fanfare, step up to the plate and deliver exhibits of breathtaking creativity. I’ve also realised that I was right to step down from the curating team. Frankly, I’m crap at the diplomacy stuff and it’s been a relief to just get on with the day to day stuff of putting the exhibition together.

A few days after my original blog about the exhibition we were contacted by Dr Oliver Lewis, a lawyer from Doughty Street Chambers. Oliver has human rights running through his veins and he was proposing setting up a meeting between families, lawyers and other interested parties and allies to look at ways in which the legal world could help people trapped in the ATU scandal. In a way, it was Oliver and the legal world’s contribution to the exhibition.

Yesterday was the day of the meeting and by crikey, it was the perfect exhibit. It was highly creative and it brought together an incredibly diverse group of people in a way that I’ve only experienced once before and that was with Justice for LB.

There were about 60 people in the room. A large chunk of family members who have a son/daughter/sibling currently in an ATU. There were several people with learning disabilities present, two of whom have experienced life in an ATU first hand. The brilliant Kate Mercer arrived. Five minutes in Kate’s company and you truly believe advocates can change the world. There were people from the CQC, the EHRC, Respond & Dimensions present. All equal. All sharing their experiences and wisdom to achieve something good.

And finally there were ten lawyers there. I fucking love lawyers, especially those who work in human rights and mental capacity. The combination of phenomenal professional expertise, total humility, great humour and absolute selflessness grabs my soul everytime. On a personal level an extra emotional punch was carried in that Aswini was there, Steven’s barrister from his court case. I hadn’t seen her since we said goodbye the day the judgment was handed down seven years ago. I couldn’t help sharing with the group that Steven has a photo album with a section called “People who saved Steven’s life” and Aswini’s photo is one of the main pictures in that section. I must admit I neglected my duties as facilitator of one of the exercises as Aswini and I spent half an hour catching up. It was lovely.

The meeting agreed to Chatham House rules which means I can’t share any individual stories here. However, there was one theme that came up on three occasions where the simplicity of the lawyers’ suggested solutions had me reeling. Basically, people shared stories of very common human rights abuses that probably occur in most ATUs. Stupid practices and rules that are service led and trample all over the person’s human rights, if they’re even considered at all. You know the sort of thing I’m getting it. Anyone who followed George Julian’s incredible live tweeting of the recent inquests will remember the utterly bleak life Danny Tozer lived in the Mencap facility before his death. I don’t think the concept of Danny’s human rights figured on the radar of any of the decision makers in that godawful place. Those sort of stories were replicated by family members yesterday. Anyway, the lawyers’ responses to three of these stories was that more often than not, a single letter from a solicitor resolves the issue by simply asking the question how are X’s human rights upheld by these practices. A letter is also a shot across the bow as well. And it sends a meta message – you are being scrutinized. We are on to you.

I thought this was fabulous and I could see that several other attendees felt the same way. No grand gestures. No costly, time consuming court cases. We were expecting discussions around group actions against specific providers or consistently offending local authorities and in fairness, both those courses of action are still on the table. But the idea that one single letter could change everything floored me. It’s a perfect work of art.

I’ve had one reservation about the meeting since Oliver first suggested it and it has niggled away since and remained during and after the meeting. We have been very clear since day one that Rightful Lives is not a campaign. Rightful Lives actually only exists as the name of the exhibition. We have to be very careful that we don’t give people false expectations about what we can achieve and have to continually remind where the boundaries lie. We are a very small group with absolutely no resources and any work for the exhibition has to be fitted around caring, work and other responsibilities. It was because of our limitations that the idea of an exhibition appealed. Basically, we have tried to say from the outset – “Here is a space. Please use that space for your creative expression” and our responsibility goes no further than that. This was challenged at one point during the meeting. There had been discussion around funding for legal action and one of the delegates said: “What you need to do is set up a crowdfunding campaign to raise funds for this”. Obviously that’s a great idea but we had to nip in quick to say that the Rightful Lives team couldn’t possibly take on the responsibility of such a major project. So, I just want to apologize if the fact that exhibition exists sets up false hope in people but we have to be honest about our capabilities.

I don’t want to end on that note after such a positive experience. To be part of such a collective, creative encounter will stay with me for a very long time.

And if Channel 5 ever run a special Barrister’s Blind Date, put me down as a contestant. Or as Sarah Brightman may have sang – “I lost my heart to a human rights lawyer….”


Fuck Off Personal Budgets: Episode 81

My apologies but I’m writing this post to stop me hurling myself off the roof in complete frustration and anger. Please bear with me, it’s a long story.

Just after Christmas I started to receive very threatening letters from HMRC every Saturday morning claiming I owed them £560 for the financial year 2016/17. I didn’t but nobody was interested and the letters became more and more sinister, threatening court action and the bailiffs. I was terrified because despite repeated phone calls to the debt management team and the employer’s helpline, nobody was prepared to entertain the idea that they may have got it wrong. And as Steven’s support workers all became self employed at the start of 2017, I didn’t have the money to pay off the “debt” anyway.

Then all of a sudden, four weeks after the letters started, I received a phone call from HMRC’s dedicated carers team. We spent ages arguing the toss over the money owing and then she dropped the bombshell – “Do you realise Mr Neary that you are actually owed quite a substantial sum of money from us?” Unbeknownst to me, in 2015 HMRC introduced an “employers allowance” that they kept very quiet about and which I’d never claimed for in the two subsequent annual tax years. I was informed that it wasn’t too late to claim and that I would be due in the region of £5k. I was gobsmacked. I put in an immediate claim and received a letter on 9th February telling me that the claim had been successful and I would receive a refund shortly.

It got to the end of April and I hadn’t heard a dicky bird. I phoned up. Each call takes well over an hour because the call centre who handle the employer’s helpline don’t actually know that the Dedicated carers team exists and as an example of undedication, the dedicated carers team don’t give out their phone number for you to call directly. So every phone call entails acting out the charade of “I’ve never heard of a carers team before” until 30 minutes later, you hear a giggle and a confession of “Well, you learn something new everyday”. Eventually, I spoke to a carers team member who informed me that a credit was sitting on my account and would stay there as I hadn’t formally requested a refund. I did so immediately and was promised that the outsourced team who deal with refunds have a service level agreement to make payments within six weeks and my deadline was 2nd June.

The 2nd June came and went. Another hour long call. Another learn something new everyday performance. Even though nothing had happened, my latest phone call prompted a new SLA and a new deadline date – the 2nd July.

The 2nd July came and went. Another hour long call. Apologies for the delay. The payment had been raised and was waiting the authorisation of a manager. A new deadline date – the 23rd July.

Today’s the third deadline date. What a fool I feel for feeling a sense of anticipation as I check my bank account. Nothing there. Another hour long call. Another you learn something new everyday tango. “How peculiar” was the call centre’s employee’s initial reaction after looking at my account. On the 4th July, two days after my last call, three postal orders were raised (who on earth still issues postal orders?). They were authorised by a manager on the same day. And then the postal orders came a cropper. Sums over £2k need a second authorisation and that hasn’t been done. A new deadline date – 7 Days time on 30th July.

I said to the woman, it’s hard to imagine if the boot was on the other foot, HMRC affording me 7 and a half months grace in making a payment. They were talking bailiffs after three weeks.

I don’t think I’m actually going to see this money. I’d make a complaint but I suspect that would slow it down even further. They have still deducted the debt that I don’t owe but I’ve lost the will to challenge that and will be more than happy if they ever cough up what they’ve promised.

This is the reality of personal budgets. Just so Steven can go swimming.



Have you ever read Mitch Abolom’s book “Five People You Meet in Heaven”? The basic premise is that after you die but before you enter heaven, you have to encounter five people whose life you impacted upon. You may not remember them. Your meeting in life may have been fleeting. But to them, you carried an important message.

This week, I think I met one of my five. His name is Gio.

I’ve spent the last four days in Torquay. I cashed in my Trivago bonus points and got an absolute bargain at the very posh, Osborne Hotel in Meadfoot Bay. I had no big plans for the week. A daily workout. A daily swim. Cream teas. Perhaps take in a show at the theatre. More than anything, I wanted to gaze out to sea and release some shit. Maybe I would hear a message. Possibly, I would come home a different person to the one who went away.

When I got to Newton Abbott station on Tuesday afternoon, a group of rugby players nabbed the four taxis sitting on the forecourt. The cabs drove off, leaving me and another chap standing forlornly in the empty car park. We waited about fifteen minutes but no other cabs arrived. My fellow passenger pointed out a cab company’s phone number stuck on a lamppost. He didn’t have a phone, so I called them to book two cars. Gio turned up in his cab and said he would take both of us. It turned out we were going in completely opposite directions and the other chap’s journey was slightly shorter than mine, so Gio dropped him off first. All in all, the ride took just under an hour.

On the Meadfoot Bay leg of the journey, Gio and I chatted. He came from Italy in the mid 1970s and for a while he lived pretty close to Cowley. He and his wife moved to Torquay in 1990 and they’ve lived there ever since. He was interested in me and my life. I told him about Steven. He fell in love with the support workers who were making the holiday possible. He knew about the nightmare of dealing with the local authority. For the past 25 years, Gio has unofficially had the contract for providing the transport for several of Devon’s learning disabled community. He told me about the man with autism who he chauffered for 18 years and who died unexpectedly last Christmas. Gio did a reading at his funeral. He told me about managing the personal budget of a 50 year old woman with downs syndrome. Her mother, now in her 90s doesn’t have the energy to deal with the LA and HMRC, so Gio stepped up to the plate. He knew and I knew.

Last night Gio drove me to see a dreadful amateur production of A Murder Is Announced at Paignton. He asked me whether I’d received my message and joked that I probably wouldn’t get one during the ham acting of the Bijou Players. I got there early and found a charity shop that had a VHS tape of The Proclaimers that Steven has never had in his collection. On the journey back to the hotel, we sang Make My Heart Fly. He was even familiar with The Proclaimers.

This afternoon, Gio drove me back to Newton Abbot to catch the train home. I was feeling downcast as the holiday had ended. I told Gio that despite hours of staring out to sea, I never received the message. Nothing coherent anyway. And he said, “Perhaps that is the message. That there is no message. You do what you do. You carry on carrying on for the rest of your days and then you die. That is all. And if you can get three days in beautiful Torquay from time to time, that is good.”.

We shook hands and I felt a little tearful and a little bit heartened. As I walked towards the station enterance, Gio shouted after me:

“Hey Marky. Look into Steven’s eyes when you give him his Proclaimers tomorrow. You might see your message”.

Cheers Gio.


Two large envelopes were sitting on the mat when I got home. One from the Direct Payment team. I was wrong. They hadn’t started trusting me the last six months. They’d forgotten to send me the monthly audit forms. They’ve sent me seven months worth of forms to be filled out by the end of the month. The other envelope contained the completed reports for the Community DoLS, ready to be submitted to the Court of Protection. I’m expected to sign them off by next Wednesday. More messages. But meaningless messages that say nothing about our lives.

Gio knows.