https://www.youtube.com/watch?v=UKnBgJG9A8E
Here is a great interview where the man himself explains his reasons for and the reactions to his song.
https://www.youtube.com/watch?v=LSo9OErEmM4
For the last 2 or 3 years now I've sat on our local Autism Partnership Board as a parent carer and always been dismayed at the lack of people with Autism around the table. The Board is chaired by a Councellor and we recently had a new Chair appointed. Still dismayed by the lack of input from people with Autism and the general apathy of organisations who attend it to organise any working groups or consultations with autistic individuals, I decided to organise one myself. The new Chair was very encouraging and enthusiastic about meeting them. I got together a group of young adults with autism, many of whom I'd known since they were kids as well as some of my young mans band members. I just wanted the new Chair to hear their experiences, their reality, from them. I've been trying to be their voice at the board but thats not right. One young man in the meeting said "for years I used to sit in meetings at school about me and my Mum would tell them what I needed, fight for me and explain the difficulties that I had. Don't get me wrong I'm really grateful that she did but to this day I struggle to speak for myself because I haven't had any experience of it" Guilty as charged. Yep, I've done that, over and over.
This time last year we were in and out of A & E. I carried a growing plastic pocket containing his notes and his Autism Passport. Autism Passports are a way of communicating a persons condition and their needs without awkward and repeated verbal explanations. My son hates them, he thinks people should "just know because Autism is not rocket science" but still I have to shove it under their noses. The majority of staff take the time to read and understand, some just don't have the time and some just don't think they need to. A nurse and fellow parent brilliantly suggested that a symbol should appear on the individuals computer records which would alert staff. Not rocket science. There's alot of talk about awareness training and indeed that's part of the Autism Strategy set out by the government under the Autism Act 2009. There's alot of talk. But, as with education, why isn't it a chunk of practitioners training and generally integrated into all that they do?? To insist that practitioners take time out of their immense work loads and attend an hour long awareness training session, may help but it needs to go much, much further and its not mandatory unlike the rest of their medical training. Not important enough.
In the general media at the moment there is an awful lot of talk about equality. I've heard so many people talking about the rights of individuals and they quite rightly mention LGBTQ, race, gender and religion BUT NOT DISABILITY. I've shouted at the telly quite alot this week. The word retard is used in films, fucktard being very popular at the moment, and seems to be absolutely fine. But its not and so is a whole host of language that is being ignored. Disability hate speech, hate crime and discrimination needs to be head line news. Yesterday I got a letter from the DWP stating that they stopped my sons ESA payments over a week ago. He gets income related ESA, but they have said he hasn't paid enough national insurance so they're stopping it. I'm not quite sure how he is supposed to have been paying NI when he hasn't been working, the tribunal was less than a year ago. What kind of fuckery is this? And Esther McVey said this week that it was ok that families would be 2000 pounds a year worse off as difficult decisions had to be made. These are not difficult decisions these are cruel.
Groups like Autistic UK who are run by Autistic people for Autistic people are growing and teaching "normal land" about ableism. I'm learning a lot and its changing my perceptions and making me question my own views and behaviours.
I'm not quite sure where I'm going to go with this blog, my young man is finding his voice in Punk music, his fellow band mate wrote the lyric "Pay day is today, fuck all came my way" A local peer to peer support group are now represented on the Autism Partnership Board. My voice needs to be quieter because "You can read my body but you'll never read my books" - I need to start reading.
