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Neary has written a blog post offering his perspective and the astute amongst you will have noticed that LB’s pic has been replaced by Steven.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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Introducing LBBill to the Department of Health

Today a small number of #JusticeforLB supporters visited the Department of Health (Steve, Sara, Rich, Mark and George).

DHMeeting031114

We met two people, Sarah McClinton and Frances Smethurst, who are responsible for the policies that apply to disabled people.

They were interested in hearing about Connor’s experience and Steven’s experience and the experience of their families in supporting them.

We introduced the #JusticeforLB campaign to them, and talked about our hopes for the #LBBill.

Afterwards we recorded a short film to share with you all.

Tomorrow, Tuesday 4 November, we will share the first draft version of the LBBill and are really looking forward to your feedback, thoughts and comments.