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Cowley Men Forever

September 3, 2016

You may have heard the news by now.

On Thursday, I received a phone call from the senior housing manager at the council. I guess she had been passed my letter from the Director. The first thing was the news that the new build flat that has been promised for Steven since 8th July is not going to happen. The rumour is that there is a major electrical fault with the whole block and will require underground cabling to be replaced. It is unlikely to get done before Steven’s house is demolished. She then invited me to a viewing of a ground floor flat I bid for a few weeks ago. It had been adapted for a disabled person in a wheelchair, so I didn’t think we’d even make the shortlist. But we were number one!

So, yesterday at 2pm, me, my sister and the latest in the line of Cowley men, Henry Keary (2 years 6 months) pitched up to be greeted by the viewing officer. It’s fair to say that the place was an absolute pigsty. Jayne & I had big fears that we’d find holes in the walls, kitchen cupboards hanging in mid air and in fairness, it was nowhere near as bad as that. But I would defy anyone to move in and live there before the place had been deep cleaned and decorated throughout.

Last week, I was given 90 minutes to make my decision. Yesterday, I was given 0 minutes – I had to make up my mind there and then. No time to reflect. No time to consult Steven. No time to even get my crystal ball down from the top shelf.

I said “Yes”. The location is perfect for Steven. It’s a ground floor flat and he’ll be delighted that he doesn’t have to go upstairs every time he wants a pee. A parade of shops across the road. And most importantly, he can wave to Uncle Wayne every day as Wayne leaves for work. Can you imagine how “massive exciting” that will be? I was vindicated this morning when I told Steven – “Uncle Wayne? Every day? Waving in the living room”. And then a bit of soppiness creeped in as he thought about seeing his cousin on her way to work as well (Mention his cousin and he goes beetroot with a soppy grin) – “Jodie Keary? Every day? In her lovely green dress?”

A short post on Facebook and a single tweet on Twitter has prompted so many offers of help. I’ve been totally overwhelmed. I turn to mush at acts of kindness. A tip for counsellors – don’t read one of those moving tweets two minutes before your client rings the doorbell – you’ll find they end up asking you “how are you?” rather than the other way round.

I’ve decided, to coin a phrase I hate, to Project Manage the work that needs doing. I’m too old, too unfit and between caring for Steven and working a few hours a week, too tired to take on all the work myself. It would take me weeks and we don’t have that time. I often find myself watching Homes Under The Hammer and am always interested when they are asked how much they have budgeted for the work. I did a quick calculation and Steven can use some of the damages money from 20111 that he has left and I still have some money from the compensation from the time Hillingdon unlawfully stopped the housing benefit. We can afford to do the deep clean, decorate throughout, carpet throughout and put up a new fence in the garden. The relief when I made that decision was immense.

Steven’s advocate and the lawyer who represented me in the housing benefit appeal have been very busy and written a letter to the council, pointing out about reasonable adjustments and what work and costs they should be covering. All the signs are so far that they won’t be doing anything, so anything they do come up with will be a bonus.

I had a dream last night that was illuminating. It was like a 6 years on dream from one that I had back in 2010 when Steven was in the ATU. It was tremendously useful back then and helped me enormously manage the professionals. The 2010 dream was – Steven and I were in a theatre and separated by an aisle. On stage, the actors were several of the key players in his detention. They were playing various Shakespeare roles whilst standing on rotating Dias. The Dias were whizzing around and the players were getting more mad, more grotesque with each spin. Under the stage was a giant “Server” that had malfunctioned, causing the onstage chaos. It’s fairly obvious – the giant server had stopped working properly and its actors were being driven crazy as a result.

So last night’s dream was in the same theatre. At first glance it looked like the same actors on the stage but at closer inspection they turned out to be holograms – they weren’t real. I peeped under the stage and the Server had been removed. It was empty. The whole production was empty and the people were not real.

This is how I see services. There is nothing there anymore. I’m old fashioned so I foolishly cling to some old idea that Services do still exist. Or should exist. But they don’t. And I waste so much time and energy and emotion when I encounter this split between my expectation and the reality. The frontage looks real but it’s a one dimensional illusion. There’s no point moaning about non existent services – you’re the only person who loses out whilst you distract yourself with that whinge. The worst thing one can do is go up on stage and try to engage with the hologram. It’s fatal because you will go mad too.

This is the end of a four year journey (hopefully). On 6th September 2012, I sat in the council offices, howling as they informed me that they were stopping my housing benefit and we would be homeless. A year of waiting to be evicted. Two years and 10 months of being in temporary accommodation. But now Steven has a home for the rest of his life. A Cowley Man for as long as he wants or until the day he dies.

Christ, I’m tired and we haven’t even started yet.

From → Social Care

  1. Excellent news! 😃 It’s amazing the difference a good clean, new paint & flooring can achieve. I’m sure Steven will enjoy putting his own stamp on his new home! 😃😃

  2. you did amazingly well, on the spot decision and no there is no net , scary stuff. The absolute joy of having family close by , aunties and uncles who love you still when you are full grown. Please pass on very best wishes to Steven for health and happiness in his home , good neighbours and fine weather for moving x

  3. Georgina permalink

    Ok so you made me cry, so pleased for you both.

  4. swanarchie07 permalink

    Happy to hear Steven will finally get his own home , a place to call his . You inspire me with your much dedication fighting not only Stevens rights your own but for all us other carers of disabled children and adults thank you mark xx

  5. Jayne knight permalink

    You know what I think


  6. Rebekah permalink

    Seriously, don’t worry about the decorating. If you get a hold of a flat despite this bidding system in place you’ve done the hardest bit. Steven is safe and it sounds like he would be safe in a sewer if he has you, so well done. x

  7. As usual Mark I am torn between tears of rage, sorrow and joy. You both deserve real services, as do so many others. This is really excellent writing and produced under such unimaginable stress. Truly impressive. And important. I hope it achieves the reach we all need it to to help precipitate change (yes, seems unbelievably naive but light a candle etc etc).And thank you for expressing so well my emotions from more than a decade ago. We opted out and did our own thing. It felt wrong but was so right for us! I lament that things are worse now than ever. You are right. Save your energy for making the impact you want to see. Its infuriating to see some “professionals” collecting salaries and sleeping soundly at night despite not earning them, and being silent as services are eviscerated, but our kids have homes and lives and that’s what matters.

  8. Richard West permalink

    Excellent news for you both and good luck.

  9. What a relief …. 🙂

  10. simone aspis permalink

    Mark – hold onto your horses – better check the tenancy agreement before getting to excited by Stephen having a home for life – particularly with all the social housing reforms that have happened over the past few years – 2 – 5 years is the tenancy agreements being offered by SH landlords? Jane is that your experience – I know HAs and Councils are moving more towards fix term tenancies rather than life-long tenancies – like I have now.

  11. Sally permalink

    Hooray, that is wonderful news.
    Of course you expect services to provide a service! It is enraging to have those mad conversations with various workers in which you try to find out what they provide and they sidestep. It’s Cleese’s cheese shop sketch over and over.
    Now you haveto decide whether to tell the council you are prepared to go ahead and pay to deep clean and decorate. Of course they should-but they won’t if you do. “(Mr Neary wanted to do that himself”) . Mind you, they may not if you don’t (” We will get back to you in that, perhaps.In the meantime just don’t unpack “)

  12. webhorus permalink

    I’m so thrilled for you both – at last, a proper place of safety for Steven. If I were closer, I’d come and clean the damn place myself. I’m really, really chuffed.

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