Day 5: Twelve Days of Christmas #LBBill

Day 5 of the #LBBill Twelve Days of Christmas and we’ve taken a step back from the detail to ask what it all means. Mark Neary has written a blog post offering his perspective and the astute amongst you will have noticed that LB’s pic has been replaced by Steven. It’s really important to those of us involved with the #LBBill that we situate this development in the experiences of those who it should help.

We’d like to feature more people, like Steven, whose lives could be improved if the #LBBill and the suggestions within it became law. If you are someone, or care for someone, who you think the #LBBill could help, and you would like their face to join the campaign, please email us a photo with a sentence or two of why it would make a difference and we’ll feature them later on in the 12 Days and throughout the #LBBill campaign. (Please note we will use your pics in publicity so please only use real names if you are happy to do so). Now over to Mark:

Steven

For me, there is a really simple idea at the heart of the #LBBill. If we were discussing this in relation to anyone else in the population besides physically or learning disabled people, we would be dismissed as ludicrous. The core idea is that every physically and learning disabled person has the right to choose where they live. They may choose to live on their own; on their own with support, with their families, or in a residential setting with other people. And once that choice has been exercised, other, just as important choices open up. Once someone has made a choice about the four walls they live in, then they can begin to choose how they live within those four walls.

The simplicity of the #LBBill was on my mind a lot on Christmas day afternoon. People who know mine and Steven’s story will know that he was illegally kept away from his home in an assessment and treatment unit for the most of 2010. The local authority planned to move him to Wales but on Christmas Eve 2010, through the intervention of the Court of Protection, we were able to spring him from his detainment and he came home at the very last minute to enjoy Christmas in his family home.

Watching Steven go about his business on Christmas morning, made me reflect on how different it would have been if he had been detained in the unit over Christmas. Here are a few examples from Christmas morning:

  • Steven awoke to have fresh fruit salad for breakfast, which he chooses to have every weekday morning. This was not possible at the Unit where the choice was either toast or cereal.
  • After opening his presents, he chose to watch the most eagerly anticipated of them – the new Mr Bean DVD. This would have been impossible in the Unit as the DVD player had broken a few months earlier and nobody had repaired or replaced it.
  • Next Steven listened to his new Abba triple set CD. He might have been allowed to do this in the Unit but he would have been sent to his room with his ghetto blaster, so as not to disturb the other residents and staff.
  • I brought Steven a Basil Fawlty mouse mat and naturally, he wanted to try it out, so up to the bedroom to do some YouTube surfing. This would have been impossible in the Unit because there was no PC or Internet for the residents to use – the only PCs were in the office and only the staff were allowed to use them.
  • Before lunch, Steven wanted his annual treat – Christmas Top of The Pops. We have every episode recorded since 1993! Whether he got to watch it in the Unit was a lottery – every bit of TV viewing had to be negotiated with all the other residents.
  • And finally, Christmas lunch. That probably would have ended up on the floor as the Unit weren’t particularly tolerant of Steven’s need to have all the food not touching on the plate. It’s quite a design feat with a full Christmas lunch but with a bit of patience it can be done.

That is just one day of the compromises and loses someone living in an assessment and treatment unit has to manage. Now multiply that by 364. Year after year. What a bleak existence.

Please get behind the #LBBill. It’s for life – not just for Christmas.

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One thought on “Day 5: Twelve Days of Christmas #LBBill

  1. Mark I have followed your blog for some time now. I do not have a twitter account myself but I follow your tweets and the very informative links to other blogs that you share with us. Some of your blogs are so funny, I find myself laughing out loud. Some of them so sad they make we weep.

    My son’s recordings of Top of The Pops goes back to 1989. Actually I want to dump the ones with Savile in them, but my son would wonder why I was being so unreasonable with his possessions.

    I am behind the LBBILL because I want it to succeed. I want it to be a lasting legacy for the short but wonderful life of Connor. I do not want to hear of any more families having to suffer unnecessary emotional trauma because they happen to be raising someone who happens to act or look different from what is considered ‘normal’.

    I admire Connor’s mother, Sara. I believe she is tremendously gifted. She has guts and stamina. She has shown herself to be brave and resilient, even though she is probably screaming inwardly. I hope the bill becomes law. My god this bill is needed now more than ever.

    My own son is 42 years old. He has cerebral palsy and a learning disability. He walks with a pronounced limp and uses a wheelchair for outdoor use. He was diagnosed with epilepsy in 1989 after he had an hip operation. His seizures stopped in 2008. He is still living at home with us, his mum and dad, and he has not accessed day services since 2010. He has always had a loving nature and until four years ago he led quite a reasonably good life. The closure of his day centre hit him hard and he had some bad experiences with the second rate alternatives. He has now turned his back on anything connected with social services. I cannot pretend that this situation is ideal and it has meant huge sacrifices for my husband and I.

    We will obviously have to consider my son’s future without us, and the reality that one day he will be living in residential care or supported living. The thought that the LBBill could potentially give my son some say in his future gives us a bit of hope.

    At this moment in time my son is withdrawing from his anticonvulsant medication, with awful side effects including hallucinations, anger and anxiety. His psychiatrist says they are not withdrawal symptoms. He says he wants to put them all back again because they are really mood enhancers too. My son was not depressed when he was given anticonvulsants 25 years ago. He did not have a mental illness. He was a happy loveable soul. The thought of my son being given drugs that he does not need makes me feel scared and helpless.

    Liked by 1 person

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