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The Film

June 2, 2017

I’ve spent the last two days with a film crew. The Human Rights organisation, @Rights_Info wanted to make a short film about the ordinariness of human rights and felt that mine and Steven’s story fitted the bill. I was happy to go along with this.

The film will be released next Friday, the 9th June, to mark the sixth anniversary of Justice Peter Jackson handing down his judgment in Steven’s case.

By the time I got back to my flat last night, I felt exhausted. There was nothing sexy or glamorous about doing a ninth take of me walking along the canal towpath. We didn’t get beyond four takes of me preparing Steven’s fresh fruit salad for breakfast because I ran out of bananas to chop up. I’ve prepared my story for the neighbours who were bemused by seeing me leave my front door seven times whilst a camera crew walked backwards into the road. I’ll tell them that this year the XFactor is having an over 55s category and this was my introductory piece before I wow Sharon Osbourne with my Karma Chameleon.

Alongside the exhaustion, I felt so proud of Steven. I’d warned the film crew that whilst they could get me to do several takes of staring wistfully over the riverbank, that wouldn’t work with Steven. Keep the camera rolling, your fingers crossed and you may get a bit of footage. The crew were fabulous. They got Steven immediately and knew exactly how to handle what could have been an anxiety provoking experience. They ended up with footage of Steven opening his front door to let me in, some shots of Steven on his sofa next to the life size cardboard cut out of Mr Bean whilst talking about Fifteen to One. I hope they got the shot of Steven kissing my head but they certainly got a long piece in his kitchen of Steven chatting about Shane from Boyzone.

Every so often, as I observe Steven living his ordinary life, I get pulled short, suddenly thinking of what might have been. Everything that Steven now values about his life wouldn’t have happened if he was in that Welsh hospital. The hot tub is being delivered on Monday and Steven was beside himself with joy when he saw the pictorial timetable I’ve mocked up of who will be coming for a soak on what days. A week long joyous experience that would be impossible in an institution. This week, I learned about a guy who has been in an ATU for 16 years. He was 24 when he was admitted; he is 40 now. It’s impossible to reconcile all the normal, ordinary things he’s missed out on over the past 16 years.

Someone just tweeted me to say that the film could be important in delivering the message that living in one’s home always trump’s living in an institution. I don’t believe there’s anyone who genuinely believes that an institutional life can be better than living in your own home. I think we can see straight through the Responsible Clinician who argues that detention in an ATU is necessary for someone with “extremely complex needs”. We know those sort of statements are as vacuous and disingenuous as one of Theresa May’s most blandest soundbites.

The next 7 Days of Action campaign kicks off on 19th June. The theme this time is “The Trade in People”. I’ve seen some of the material and the amount of profit to be made from medicalising and detaining learning disabled people is gob smacking. It’s not about complex needs: it’s about making private providers nauseatingly wealthy.

Perhaps a film of me peeling a satsuma and of Steven showing off his Gladiators posters, may be an antidote to that myth.

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  1. Diana Macbeth-Case permalink

    Can’t wait to watch this film, wow, well done you and Steven. ❤️💕

  2. Do let us know where we can view it. And thank-you. xx

  3. simone aspis permalink

    When and where can we view the programme – I assume the point of the film is to show it! Please send us details or a very juicy link and I can send out some very big tweets – great – I have learnt to do my own big tweets. next 7 Days of Action campaign – how do I get involved in that? I am learning loads about the MH system at the moment…..

    • It’ll be out next Friday 9th on the @Rights_Info website. I’ll post the link as soon as it’s released.

      • simone aspis permalink

        great and I can retweet it via my personal account and sure others will do the same – well done Stephen and Mark – looking forward to viewing the film – are there other stories being covered out of interest

  4. weary mother permalink

    Excellent Mark.

    And thank you…

    for the space in your blog, that you have given me and so many other families, to describe our reality. Without this voice, our lives of undiluted anxiety and fear lived always at the erratic whims of absolute power…. we would remain silent and completely invisible..

    We have no where else to go to be heard. x

  5. Looking forward. Love between people and their families no one can challenge, as all need it.
    There’s no human condition where family should be less involved.. and home is where the heart is.
    Complex needs need more love, and devotion, not less.

    We families need extra support at times – a lot cheaper than institutions, as happiness isn’t related to money, but home with those who love you watching over you, doing ordinary things with you.

  6. LizzieD permalink

    It is SO lovely when ordinary people outside the system do just get what the professionals seem determined to miss.

    Given the preseent furore about the cost of social care, following the money seems like a very good idea. I think we all have our own ideas (and sometimes examples) of the lunacy and the hardship down the bottom end, when people are repeatedly told that this isn’t possibly, and that won’t happen, but getting into the detail of where the money is going might be useful.

    I was talking to someone yesterday who had been told that as she was over pension age, she wasn;t entitled to any interest or concern as a carer. Unless you have figured out how to be a do-it-yourself lawyer, stuck with bad answers.

  7. simone aspis permalink

    Sadly I was in a situation where I had a very big disagreement about whether a person with ASD should just accept anything in terms of accommodation after discharge. You could fell my blood boil – when I said how much is the state prepared to fund an psychratric placement that costs well over the funding that could be spent on helping her set up home with a great care package near her family and friends….. I do not buy the bull shit that there is no t enough funds – its just how the state uses –

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