As relevant today as in 2017!
As I am sitting loading content onto our new website (a work in progress!) I came accross this post from a few years ago…I thought I’d share it again.
“Sometimes songs come on the radio just at the right time! ‘Something inside so strong’ has just played and it brought to mind the determination, bravery and strength of so many people with learning disabilities, their families and supporters who keep standing up and saying no, enough is enough!
I’ve met so many people across the country over the past couple of weeks and there is so much I could write about.
I could focus on the people I am working with who feel defeated by the ‘system’. They feel defeated by staff who appear to have little human interest in them and by managers often feeling overwhelmed by the current financial challenges. This is worth writing about at some point, as our work at Paradigm focuses on the support people need to get and stay focused on what really matters, but for now I want to share the thoughts the song triggered in my head.
So, the conversations and stories replaying in my mind are the voices and stories of a number of people with learning disabilities, family members and supporters. Some people I’ve known for a long time, others I am just getting to know.
- A woman who, with the love of her Sister and family is achieving so much of what she’s dreamt about for a long time. A woman who keeps getting back up and saying ‘I’m not giving up.’ By the way – I also had a flash back of this woman singing this song in my car one day and saying….’You ain’t going to stop me.’
- A man living in a place with staff that he doesn’t feel respect him. A man who doesn’t like strangers and things happening at short notice. A man who was ‘told’ last week he had to have his annual review this week. Why? Because the social worker needed to get it done by the end of the month! He and his Mum felt they had no choice or the funding would be threatened. Not only was the social worker a stranger but she turned up with her manager (another stranger) who had to observe her. After an hour, the man stood up and left because he was angry that people were sharing private things about him. Brave man! Next time he knows he’ll say he wants more notice and no strangers. He won’t accept anything else!
- A 96 year old woman who lived in a large organisation for over 20 years and now, living in a shared house, still has dreams of living in a cottage with views over the hills. It’s not too late!
- A Mum who’s really struggling, with her daughter, to find good Personal Assistants who really ‘get who her daughter is.’ Even though it’s tough there is no sign of either giving up.
Whilst I’m celebrating the strength of the people above, I’m also saddened and angry that they have to be so strong when all they want is to live life!
We are all working to a future where people who don’t have to face such challenges to living good ordinary lives.
What can you do now to ensure people know they have the right to be free, to say NO, to live a life of their choosing, to ask new questions and demand respect?”
To quote Labi Siffre:
“The higher you build your barriers
The taller I become
The further you take my rights away
The faster I will run
You can deny me, you can decide
To turn your face away
No matter ’cause there’s
Something inside so strong
I know that I can make it
Though you’re doing me wrong, so wrong
You thought that my pride was gone, oh no
There’s something inside so strong”
Here’s the text I sent….
“Hi there Jo,
I have to share this with you. I had the most amazing couple of hrs with Karen, a 16 year old girl and her family today.
I was asked to meet Karen* and facilitate a plan to support her planning for when she leaves school. When asked by the Local Authority to meet her the message was ‘we really want to try this but you’ll probably get nothing out of her. The young woman is in a residential school with 2:1 support, the family are confused by the lack of joined up thinking and action by education, health and social care. They are understandably very concerned about the future. When I arrived the parents seemed far from happy to meet me I could see them thinking ‘another b….y professional!’
It was beautiful. Within the first 10 mins and with me having spoken of the love the family have for each-other, Mum was in tears. Loving tears, tired tears, relieved tears.
The whole session, with a great link worker, support worker, and social worker there as well, turned into a positive gathering. The young woman stayed for the whole time, cuddled next to Mum and Dad and when asked what was important to her about her family she said Love and Kisses. Mum cried again. There were laughs when the dream for the future was to be a ‘mad scientist’. Who knows what could happen eh? The posters really help guide the conversation in an engaging way.
It really so simple isn’t it? A real conversation. Honesty, compassion, valuing of family, curiosity and intentional listening.
Mum and Dad said they haven’t experienced anything like it before and left determined to ensure their daughters voice is heard.
Great day BUT it will only remain great if that Karen and her family are supported by ALL the professionals involved to ensure something positive happens as a result of the time together.
See you tmw.
* Name changed.