Music - Sia's movie - a message of love despite the controversy...of using a non autistic performer - Maddie Ziegler - to play an autistic girl (they never cared in Rainman)
I cried through much of this movie about an Autistic girl called Music who is non verbal... there is love in here that I recognized - love that cocoons the little girl from the start who is so vulnerable and perhaps that is why there has been such an outcry because parents of disability kids are dealing with these issues right now and traumatised by the fact that one day they will not be here and the love cocoon for their child stops and they are thrown into a harsh cold scary world the parent can no longer protect them from. When Music's sister almost leaves her in care facility as she doesnt want to look after her anymore it is heartbreaking and how many parents do not want to desert their children there, yet they know as they get old they will have to 'put them' somewhere. Parents of neuro-typical (the new politically correct term?) children think oh you can just put them in accommodation later on - yet they would not like to do the same if they knew whats involved in protecting a child like this and how much abuse goes on undetected and undeterred (again without the CCTV cameras to catch the abusers) how this plays in a parent's mind over and over.
Parents of autistic and other disability children live with the trauma of what has happened and what may happen in future to their child especially as an adult and when they the parents are not here. Recent research shows 53% in Austalia (Queensland - UNSW Salomon and Trollor 2019) die of preventable deaths in disability care. They are not being cared for properly.
So with a movie like this parents are ultra sensitive to what is right and wrong to be done...as no one else is going through what they are going through.
At least Sia has lifted the profile of those children and adults with disabilities and what crises parents endure.
However, this is fiction, and a bit like charlie's chocolate factory with all costumes and dance and singing makes it very palatable to the public for a movie about autistic non verbal children. It is not all correct but it is close to showing the distress and fear of someone trying to raise their child and not getting support when they need it. It is sugar coated but it makes people see a little bit more of what is needed here.
The love of neighbours who are going through their own hardships is what shines through in this story. They are suffering but they show out of this their love and kindness to the non verbal girl and love that is so beautiful in the middle of all the darkness. The selfish drug dealing rehabilitating sister is also a typical person that though unrealistic as someone taking care of those with disabilities is touching.
In an often cold hearted world where people are selfish and materialistic it was nice to see one neighbourhood (a bit like sesame street) where people did care about the little girl. Usually there are angry stares by strangers if your child is noisy etc or unusual. However in this dark world, I have had many parents bring their children to shake hands with my son as their child saw James there at the shops and wanted to meet him and say hello, their cousin is autistic and can they shake hands with James? I have been so surprised...but out of the mouths of babes comes truth.
Sia was also walking into some dark waters with the drug dealing parent. Trying to be sympathetic to such a person. Unfortunately many actual drug parents have hurt and neglected their children who have autism if we look at the newspapers in the past because they cannot handle the amount of care or even feed their autistic child properly as these kids are very fussy often with what they eat. That is the dark reality of it. A druggie usually stays at the maturity of the age they first started taking their drugs. So when the neighbour guy says to the drug dealing sister you are like a child - meaning its all about her - that's because it is.
Despite the outcry which is warranted in not using an authentic autistic girl for the lead - in a way if you are using someone who is severe in their autism and may have meltdowns it could be unethical to film them actually being upset and not nice for the parents to have to endure the stress of it forever recorded. It can be disturbing for parents when their kid throws these 'meltdowns' in reaction to overstimulation or too much noise. I guess they could have had an autistic girl play the part who was not severely affected or nonverbal but act it and act out the meltdowns, and just had Maddie Ziegler to perform the dancing in which she is so brilliant for doing and Kate Hudson also great with the male lead Leslie Odom Jr a revelation in his acting expression and dancing.
Either way at least it has lifted the profile for those children and adults with autism to give the public something to think about and talk about, and develop some compassion on the disability and autistic children who are surviving in this world and the parents who are suffering their private of hell wondering in the end when they are no longer here who will care?
A parent of a disability child and adult child of theirs has to play a duel role one of caring nurturing protector and one of freedom fighter with a mission to get their kid through this life without them being harmed,abused or exploited. A mother or father must not only nurture their disability offspring but they must spend alot of it fighting for their rights and its not enough just to be a nice parent exhausted in trying to do everything you have to do for them on a daily basis, you also have defend your child and fight for them because if you do not you will be destroyed and traumatized yourself by what happens to them and in their futures. The pandemic in 2020 brought even more suffering on women and children who suffer more than most in crises times. Those parents with disabilities children had to fight for their rights (take note of UK) to be able to take their child outside and not be locked in and cope with the extra strain. Those with disabilities died on the sidelines during the pandemic and were barely noticed in the tumult going on in the world. One a father of two autistic boys in Queensland, who could not cope when he got cancer and was judged by neighbours for not looking after the boys properly, he was accused of neglect as he died by the 'nice' neighbours who did not help him. Shame on them. The other was an adult called Ann Marie Smith who was never given food or checked on while the careworker neglected her to death in her own home. The harsh realities of the vulnerable highlighted by the money making activities and politics of premiers ignoring the blight of those who needed help and care. Yes parents of disability kids need to be filled with rage and fight for their children similar to the girl in the "Shadow in the Clouds" movie they must get angry and start fighting for their child. She protects her little baby while fighting aliens and shooting down alien planes. You do not have to put up with injustice and why should you for your child or adult child? you must fight and fight for yourself so that you can survive and in fighting thrive as a parent by achieving your human right to protect instead of just letting those who exploit and harm in disabilities win.
Anndrea x
sign my petition - change.org/disabilitycameras