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Me & Margate

September 16, 2015

Every weekend I read the upsetting posts on Facebook from Debs Evans as she sets off on the four hour journey to visit her son Eden in an ATU. Each week, Debs takes along Eden’s dog with her. Eden loves that dog and as he enters his seventh year in an ATU, I often think about what he has missed out on, particularly in relation to his relationship with his dog.

I’ve written before about all the things Steven missed out on during his year in the ATU, and although it was only a year compared to Eden’s seven years, Steven will never get that year back. I spoke at a conference on Monday and reminded myself again about the first few weeks after Steven came home and his desperate attempt to catch up on all the things he hadn’t been allowed to do in the Unit – playing on the computer, watching his favourite DVDs.

Laying in bed that night, my mind wandered to my two cousins. They are about 10 years older than me and back in the fifties, they were classified as “deaf and dumb” and were sent away for their entire childhood to a residential home in Margate. His parents, my aunt and uncle were a feisty pair and I can’t imagine they would have been too happy about this arrangement but it was a different time, and I guess the done thing. Nobody put up much resistance to these “care” arrangements. You respected your betters, who obviously knew better than you did and went along with the status quo.

I’ve got some photos of me in a buggy visiting Philip and Gordon in Margate. I have to admit, I don’t remember much about those visits but they look like proper family outings as there are several of us in the snaps. The photos tail out as my cousins hit their early teenage. I’m not sure why.

I used to spend a lot of time with Philip when he came home. He introduced me to Southall Football Club and I went with him on the team bus to all the away matches for several years in the early 70s. He told me once about how his granddad first took him to the matches when he was a toddler. That got me thinking how Philip dealt with not being able to watch his beloved team for over 10 years as he grew up. Saturday was family visiting time, so I don’t imagine he ever was allowed to go and watch Margate play as a substitute. It was great going to the game with Philip. Being deaf, he used to carry a transistor radio around with him with high volume earplugs. Whilst watching Southall, he was tuned into whatever big match the BBC were covering and would let out these almighty cheers at all the wrong times. I recall one game as we were about to take a corner and Arsenal must have scored on the radio. All the players waiting for the corner jumped out of their skins.

As well as the football, Philip used to take to the cinema. By this point, her had a girlfriend, who I don’t think was too impressed¬† in having an 11 year old gooseberry along for the ride. Philip loved the Carry On films, as did I, so we had lots of things to share. Again, it got me thinking – was he allowed to go to the cinema in Margate?

Philip’s brother, Gordon, who was completely deaf and without speech, carved out a very successful career as a stock car racing driver. His disability not a problem. I guess the question is whether they were held back or developed by their 11 years away from their home and family?

Times change. It’s now almost fifty years on but do things change? We are meant to be more knowledgeable. More tolerant. More person centred.

I’m not sure that things have changed that much at all.

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From → Social Care

7 Comments
  1. weary mother permalink

    Your story about Steven and your cousins, reminded me of two lovely elderly ladies. They were close friends, who both had Downs. I met them and got to know them well, when I worked for NHS helping to close what had been a huge old learning disability institution. They were in the group of the still unplaced, The ones still to find a new home. They came from different LA localities who could not or would not work together to agree the process to fund a shared home for them, so the ladies would, shockingly, not be placed together or in same county In spite of all my efforts to force some sense into situation.

    ‘ Mary and ‘Jane’ had both lived at home with mum and dad till parents both died. They had lived very full happy lives at home. They had travelled on buses on their own, had big family holidays at the sea side ,and visited and been visited by their large extended families.

    Their safe lives in this old bin were visibly bleakly different from their former ‘real’ lives. They described birthday parties, and Sunday lunches etc when uncles and aunties came. Although well aware their mums and dads etc were dead, they spoke with joy of them as though still living.

    I watched them queue in the morning for their breakfast defrosted bread bun (usually with a crisp undefrosted centre) margerine and jam, white mug ready for the already milk and sugar added institutional tea pot and I saw them both, sitting down with their cousins, brothers and sisters, Aunties and Uncles and Mum and dad, to a slap up Sunday roast dinner, at home…………………………..

    Wrong. So bloody ……….well ………………….wrong.

    • Sally permalink

      WM that reminds me of the story in the Normansfleid history. An elderly resident had ended up in supported housing (please add inverted commas). She and another resident used to club together their pennies to buy flowers when they could, and she loved music. There was more than enough money for her to have a radio and flowers every week, but nobody had thought of it, nobody had got to know her. The place Mary and Jane ended up sounds as brutal and thoughtless as that. Clearly they could cope in a shared house with assistance. Clearly they needed and deserved help to make such a place their own, have family around, visit family, get to the bloody seaside. All these things are not difficult, just needed someone with power to have some humanity and imagination.
      Now we have the lip service of listening to needs, wants and preferences, but it is hot air.
      Mary, Jane and Mark’s cousins made me cry.

      • Shirley Buckley permalink

        Me too. Im starting yet another day sitting here howling. For eight years Martin has only been allowed to visit me for a few hours once every six weeks. No holidays, no outings. Until the MCA got hold of him he was part of our family with a large circle of friends

  2. Thoughtful post Mark – you might be interested to know that the school your cousins went to also set up provision for adults with sensory needs and learning difficulties which was run through the John Townsend Trust. There have been some issues http://www.cqc.org.uk/location/1-120250550
    So I guess you are probably right I don’t think that much has changed either

  3. weary mother permalink

    In same bin, three men had been close friends for over 30 years. Always seen together. One blind, one physically disabled in a wheel chair, the third a very vulnerable man who held on to the wheel chair. The sight impaired man pushed the wheelchair, the third man held on and the man in wheel chair chair guided the chair. they too awaited being posted back to own county/LA.

    Our sons and daughters feel despair and the loss of all the people who leave a person shaped hole in their lives. In this bleak place I was humbled by the resilient willingness to welcome, and the open trust of the people left in that hospital. The man without sight, immediately knew me by my name from my voice. I was told that he similarly named visiting staff from decades ago.

    Our wonderful sons and daughters continuously forgive this continuous abandonment, and welcome the new people who for a fleeting period are paid to behave……as their ‘friend’.

  4. wearymother permalink

    Sally

    In SW training I did a placement at Normansfield. (I met the people above much later (sans change?) when employed to another hospital in the North). One misty morning very early, I was walking alone up one (empty at time) of the long paths in Nomansfield when a very old man with Downs, he had white very beautiful hair, walked towards me and we smiled as we passed each other. I saw someones son, and I saw my own teenage son in his old age..

    I wrote this brief pivotal solitary meeting in my daily log, and described how I felt.

    In ‘supervision’ with placement SW she was brutal, said she had very real concerns about my ability to be objective.

    So very glad she was so very right.

  5. nic permalink

    being tolerant is the dodgy one , nice house for communal living in the village. nine en suites. LD tick, LD young men that cannot be relied on to say Hi to people and catch the bus by themselves can bugger off elsewhere. Mum gets to see the facilities and her sons are rejected due to lack of security. 100% chance they would disrupt the cricket. Some things are just as in childhood, toleration for someone who puts their fingers in their ears when overwhelmed by noise or who needs nose wiping, tongue putting away reminders. Anyone with complex needs, who gets naked or whose volume is set high , lock up and lock down. As a charming SW once told me ” I’m going back to the little LDs , I haven’t minded a bit of adult , that is physical disability, but you can have fun with the LD kids “

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