- Joe Sims
My name is …
Hello You lovely lot. Happy Wednesday.
We hope you are all doing well this January, every week our group helps a bit more and hopefully brings a little bit of warmth and light at the start of the year.
This weeks’ nomination was sent in by Sam.
We hope we can help parents and carers advocate for their relatives through stressful times and hope this nomination sparks some discussion, we wish Sam the best of luck with this campaign.
Hopefully it will work for those who want to self advocate too, so the idea of a self identifying Wish badge could grow and grow.
Here’s the nomination:
I would like to make a rather different nomination if I may 😊
I meet with many awesome families in the work I do with autistic people and people with learning disabilities.
These families often (in fact I would say always) have to fight and struggle to get what they need for their loved ones and the undermining and power games they have to put up with from professionals is sometimes gobsmacking.
Families need every inch of help they can get to challenge this and subtly (so there is no retribution - yes I know that seems ridiculous but is always a worry) let professionals know they are not being undermined and that they are the experts in their child, not the professional.
I set up a campaign a few years ago in which we distributed badges which read ‘I AM challenging behaviour’ these words were used because they are often used to wrongly described the distress an autistic person or person with learning disabilities may express. The campaign pointed out that the behaviour that challenges people getting a great life is not that of the person but in fact the behaviour of professionals who think they know best!
The campaign was very successful and went International. Now another opportunity has arose to give these families a voice and support the ‘My name is….’ Campaign as well.
Family members are subtly undermined by professionals by being referred to in meetings as ‘Mum’ or ‘Dad’ and not their name, Title, or whatever they wish to be called. Families hate this but it continues to happen. Adele who advocates for her son sent me this & together we’d like to ask for £500 to buy badges for family members who can’t afford to buy them to wear at meetings & we will be starting another campaign. We will be buying the badges from a company committed to donating to the ‘My name is…..’ charity so they too will benefit