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Additional Needs and Disabilities Autism Celebrities Film Media SEND Social Stigma

Not ‘Music’ to Our Ears

Contents

Young people’s views on Sia’s casting of Music

You may have heard of Sia’s new movie, Music, which was criticised before release for casting a non-autistic actor as a mostly non-verbal, autistic main character.

In the midst of Sia lashing out at criticism on social media, ATLAS members talked about how the casting of Music and the release trailer made them feel.

A screenshot of a tweet exchange between Helen Z and Sia. Helen Z's tweet reads: 'Several autistic actors, myself included, responded to these tweets. We all said we could have acted in it on short notice. These excuses are just that - excuses. The fact of the matter is zero effort was made to include anyone who is actually autistic. #NothingAoutUsWithoutUs.' Sia's response reads: 'Maybe you're just a bad actor.'
Famous tweet exchange during backlash around the casting of Sia’s movie, Music.

Many of the young people were disappointed that a potential opportunity for representation of girls with autism was overwritten by ableism:

“It feels as if someone who has not experienced being autistic is mimicking and taking the mick out of struggles we have and there are so many potential actors and actresses which would have been happy to be casted in the movie. There is the idea that Sia was not able to put the right environment for an autistic actress to function when filming but if it’s not working for them and the movie is about autism and disability inclusion and awareness then you should change the environment. I feel it is especially difficult to watch the trailer as a girl with autism seeing a neuro typical girl attempt to portray autism in girls, which unfortunately is a very underrepresented thing in the media and is often not acknowledged as much as autism in boys. I feel that the opportunity to bring about awareness for autism in girls has been crushed by such a horrifically degrading movie of a neuro typical attempting to show you what it’s like to live as an autistic person when they have had no actual experience of it.”

Other young people were torn, because they felt that additional needs and disabilities have been successfully portrayed by actors without additional needs and disabilities elsewhere:

“I think it is difficult. Ideally an autistic character should be played by an autistic actor as this will really help raise awareness, and potentially open up these opportunities to people with additional needs. However, I also think it is not a negative thing a non-autistic actor playing this role, as long as the portrayal is accurate and realistic.

A good example is the American TV show ‘The Good Doctor’. A non autistic actor (Freddie Highmore) plays an autistic savant character in the show, and I know his portrayal of the character has received a lot of praise and has also helped to raise awareness, as well as showing a powerful autistic role model through television, despite the fact that the actor does not have autism.”

A still from the TV show 'The Good Doctor' showing the main character Dr. Shaun Murphy played by Freddie Highmore.
Dr. Shaun Murphy from ‘The Good Doctor’

Overall, ATLAS members did not feel that the casting of ‘Music’ was positive.

“Autistic actors are already marginalised and it’s harder for them to get roles. Especially when that autistic character has already been written by non-autistic people, I think it’s disrespectful to not use an autistic actor. It’s unhelpful, and often inaccurate.”

“It’s something that affects me daily and they get to take off their ‘autism mask’ and carry on normally, plus they profit from all of this. It also would be far more accurate with an autistic actor who actually knows the ins and outs of being autistic.”

The portrayal of autism in the media

Sadly, this film does not stand in isolation. The majority of ATLAS members reported that they felt the portrayal of autism in the media was either ‘not very good’ or ‘really terrible’.

There were mixed views around having non-speaking autistic characters in films, however there was a largely positive response to having female characters with autism.

Survey responses about the portrayal of autism in the media.
Survey results from Microsoft Forms on the portrayal of Autism in the media.

“I think it’s so important to have the diversity of autism shown in the media. Too many people think it’s straight white boys lining up cars but it’s so much more than that.”

“The way autism is currently represented in the media is not very diverse. Usually cishet white men who like maths. Or it’s demonised. It’s very often talked about from the perspective of ‘autism parents’ rather than autistic people.”

Film is a powerful medium. When used correctly, it can empower and educate people. When somebody sees a film focused on autism, that may be their first exposure to the idea of autism or to an autistic person. This provides an opportunity for people to talk about and approach autism in better ways. Unfortunately, if the film misrepresents people with autism, then the ideas taken from a film could lead to autistic people being viewed and treated in negative ways.

“It could be great it has amazing potential to raise awareness to the struggles of autistic people by using our own experiences and using us for the information rather than charities and companies like Autism Speaks which believe that autism needs a cure. So if the information that the film and the character was based off of was found through talking to autistic people and if they cast an autistic person then the film would have amazing potential to widen people’s knowledge of the autism spectrum and and make the representation of autism in the media more positive.”

Disability is fluid

Clem Bastow beautifully describes Maddie Ziegler’s performance in her Guardian Article:

“there are elements of truth to Ziegler’s performance, but even a stopped clock gives the right time twice a day”

Clem Bastow, in her Guardian Article: Sia’s film Music misrepresents autistic people. It could also do us damage

Disability is fluid:

  • two people with the same condition can have completely different experiences of it
  • the level of disability someone might experience can vary from day to day.

When people don’t understand the nature of fluidity in disability, it leads to stereotyping and contributes to how disabling society is. People with additional needs and disabilities are actively excluded based on assumptions and passively through it being ignored.

The most important thing to do is listen.

You don’t need to understand how an additional need or disability affects someone to accept it. To believe the individual. To accommodate.

“They’ll decide what your ability is, and then you will be prescribed to that and then you’re not encouraged to go beyond that.”

I’m going to crush you with my love

Perhaps one of the most dangerous misunderstandings the film portrays is the use of prone restraint. Restraint should only be used if there is an immediate danger to that individual or others. When that danger has passed, restraint should stop.

In 2020, the misuse of restraint by law enforcement was brought under further scrutiny after the death of George Floyd. However, restraint is also used in health, care and school environments. At least 20 children have died in the U.S. as a result of restraint since 2001.

ATLAS recently talked about the use of restraint in schools for managing the behaviour of young people with additional needs and disabilities:

“Children and young people shouldn’t be in a position where they are treated like criminals.”

“I believe that restraint should not be used, ever, unless a person is presenting an imminent risk to themselves or someone else. As in, they are not able to stop themselves. Honestly, not even then, usually you can use de-escalation techniques.”

Participation, participation, participation

The film Music being released at the same time as ATLAS is starting to look towards Autism Awareness Week (29th March to 4th April 2021) highlights to me the sheer importance of participation and listening to the voices of people who are experts in their own experience!

How different these events could have been if the voices shared around the release trailer of Music had been properly listened to and acted upon. How different the representation of minorities, vulnerable groups, discriminated groups, those the industry continuously promote stereotypes about could be.

Film can reflect society, but it can also heavily influence it and bring about positive change.

ATLAS members have some advice for anyone reading this who wishes to portray characters with additional needs and disabilities:

“Let people be themselves.”

“Building the character and the movie off of ideas and experiences from people with that additional need and/or disability. Actually taking their experiences and using them in it and it’s easily possible to cast someone as an actor or actress with those additional needs playing the character with those additional needs.”

“They’d have to consult multiple different people with the same disability and not romanticise it or demonise it.”

“I would want them to actually consult with people who have those additional needs and involve them in every step of the process – writing, casting, acting, publishing.”

“Show people how I suffer.”

Written by Sabrina Peters, Additional Needs and Disabilities Participation Officer and edited by Rowan Foster, ATLAS member and Bank worker for the User Voice and Participation Team.

Categories
Achievement Additional Needs and Disabilities Autism Personal Story SEND

The power of participation: getting your voice heard

“Before I came to participation groups, I didn’t talk.”

“Like this [conversation] was a no go … and then I went to my first session and then like, you couldn’t stop me talking, because I realised I was allowed to speak and I was allowed to know things.”

“Professionals don’t know that we don’t know we’re allowed [to speak and know things]. They make us feel like we can’t have knowledge of ourselves, which is what we’re meant to have anyway!”

“That’s been my biggest part in this [participation], is knowing myself, instead of knowing what they want me to know. Without this, I wouldn’t have been able to spread my voice. I would not have a say in terms of what I struggle with.”

Categories
Additional Needs and Disabilities Personal Story Self-Description SEND

ATLAS: The Big Picture

Recently ATLAS members have been discussing what new starters to the group might want to know before their first session!

In a discussion about what could be included in a new starter pack, the group decided it should include information about the impact of ATLAS: “The Big Picture”.

Together, members made a mind map to express what they thought “The Big Picture of ATLAS” was. Below, some of the young people agreed to share their lived experiences in relation to the impacts mentioned.

The mind map

A screenshot of a mind map on "The Big Picture". The text in the image is written below as it is hard to read due to the low resolution.
A screenshot of the mind map made by ATLAS members

The mind map reads:

  • Challenging assumptions
  • Activism
  • Personal empowerment
  • Job opportunities
  • Improving services
  • Opens the discussion
  • Helping professionals understand the experience of the young people
  • Promoting the right of people with additional needs and disabilities
  • Making Surrey more accessible
  • Surprise professionals with our points of views
  • Better understanding
  • Helps young people be seen
  • Brought about massive change in services brought about us
  • Share our expertise on our additional needs and disabilities
  • Empower young people
  • Empower community
  • Meet and speak with other people with additional needs and disabilities

Quotes from young people

When working with the UVP Team:

“When you introduce yourself to professionals, they’re like “Oh, I didn’t realize you had an opinion on this”. They seem to be surprised that people who have additional needs and disabilities care about it and know a bit about it.”

The impact of participation on professionals:

“I think people really underestimate the impact that lived experience can have because it’s literally something you have to think about every day. If it is a doctor diagnosing you … they did a couple of lectures. You have it every day so you have to learn about it and they just seem surprised that you could have the motivation to want to know what it going on with you.”

Young person with Autism at university:

“Right now I am learning clinical psychology and I cannot function in my module because it’s like I’m reading about all these kind of typical things they expect to someone on the autistic spectrum to have and I’m like, this is a load of like absolute rubbish.”

Closing statement:

“Don’t assume and if you are going to make assumptions assume ability”


If you would like to read some of the feedback and consultation work that member’s of ATLAS work on, you can find out more on our ‘Monthly News‘ page!

Please check out our ‘Get Involved‘ page if you are interested in joining ATLAS.

Image button encouraging you to get involved. In the middle there is the ATLAS logo and surrounding it, It reads: Get Involved! "No Decision About Us Without Us!
Categories
Additional Needs and Disabilities Personal Story Self-Description SEND

A week in the life of an ATLAS member

Recently ATLAS members have been discussing what new starters to the group might want to know before their first session!

A member of the group who joined recently suggested that having some information about what the group could be like or what was involved would have been really helpful.

Together, members made a mind map to express what they thought a week as a member may include!

A screenshot of a mind map on "Week in the life of an ATLAS member". The text in the image is written below as it is hard to read due to the low resolution.
A screenshot of the mind map made by ATLAS members

The mind map reads:

  • Really enjoyable
  • Trips
  • Talk about our wellbeing
  • Action Cards
  • Surveys
  • Awards
  • Meeting new people/friends
  • Weekly groups
  • Social media posts
  • Raising awareness
  • Reducing stigma
  • Sharing your experiences
  • Makaton/learning new skills
  • Quizzes
  • Writing blogs
  • Interview panels
  • Parties/social events
  • Routine
  • Support if we need
  • Gaining confidence
  • Learn about other opportunities

If you would like to read some of the feedback and consultation work that member’s of ATLAS work on, you can find out more on our ‘Monthly News‘ page!

Please check out our ‘Get Involved‘ page if you are interested in joining ATLAS.

Image button encouraging you to get involved. In the middle there is the ATLAS logo and surrounding it, It reads: Get Involved! "No Decision About Us Without Us!
Categories
Bullying Education Mental Health SEND Social

How Language Impacts Lives: Stigma and Ableism

Contents

  1. Introduction
  2. What is stigma?
  3. Bullying
  4. Our role in ableism
  5. Self-description
  6. The power of participation

Introduction

Recently I have been facilitating some of the virtual group meetings with the SYAS members. As this week is anti-bullying week, the young people have been sharing their experiences with stigma and bullying as well as discussing ableist language and how they self-describe.

Overall, it is felt and experienced that stigma and bullying are still prevalent. SYAS are telling us that we all need to be doing more to increase the visibility of additional needs and disabilities, as well as mental health (find out more on comorbid mental health with additional needs and disabilities), throughout society.

One of the repeating themes of discussion has been the importance of language in their experience as young people with additional needs and disabilities; how the language used to define and describe them has a direct impact on their lives.

What is stigma?

In this context, stigma is used to refer to the negative stereotypes and associations that society or individuals hold against a group of people. This results in prejudice and discrimination against the stigmatised group at social and/or structural levels.

In some cases, individuals from the stigmatised group can internalise this stigma, which affects how they view themselves and the expectations they have of themselves. This is known as self-stigma. An example of this which I have heard frequently and struggled with myself can be seen with dyslexia.

Due to the stigma around dyslexia, unfortunately you often hear people with dyslexia calling themselves words like stupid, or setting low expectations for themselves. They may be used to similar treatment from the people around them since diagnosis or had heard of the stigma before realising they were dyslexic themselves. Our member Ryan touches on this in his blog on dyslexia.

Stigma can lead to people being stereotyped, isolated and discriminated against. Ultimately this can have a variety of impacts on the targeted individuals, including avoiding diagnosis or treatment, and becoming the target of bullying.

Bullying

People “make fun of disability in my school.”

There are many different types of bullying and many reasons why someone may be bullied. When it comes to young people being bullied for their additional needs and disabilities, SYAS felt like this was predominantly because of two factors: being different and the stigma surrounding their additional needs and disabilities.

“If you are different you are going to get bullied”

There is “not much understanding about how to stop [bullying and stigma]… people are still ignorant”

Stigma-based bullying is especially complex because it not only requires localised anti-bullying action but also a society-level approach to reduce stereotypes and prejudice on a larger scale.

An important part of tackling bullying aimed at people with additional needs and disabilities will be to address the widespread ableism and lack of disability awareness in our society.

“I don’t want to be made out to be ‘special’ because I have needs.”

Our role in ableism

What I can do and achieve is “underestimated by the college and my peers” because of my diagnosis

An ableist society is defined by its assumption that people without additional needs or disabilities are the norm. The way that society, physical structures and policies are designed is inherently exclusionary and inaccessible. This results in the limitation and undervaluing of people with additional needs and/or disabilities.

The way ableism presents is complex and can impact people on a variety of fronts. This ranges from the texture of a pavement surface or the lack of braille on building signs, all the way up to public attitudes and the very language used to define us.

“[Ableist] language is used on all official forms from the government. Ableist language is used as the basis of everything.”

People who do not experience and/or are not knowledgeable about additional needs and disabilities may find it hard to see how others can be disadvantaged by design or realise the existence or extent of stigma.

“Sometimes it’s not the words themselves, but the attitudes … You can use the word disabled in a derogatory fashion.”

I would like to recommend that if you are ever in doubt about the language you are or will be using, please ask the people described or impacted by that language.

Self-description

The way in which words are used to describe people shows how society sees them and acts as a perceived measure of both their worth and overall contribution to that society. How we define ourselves reveals our internal existence and true lived experience.

“Everyone around me assumes that I am not able to do things. Whereas I can’t do some things some days, but I can other days … They had only read the language on my report and not met me. Then I spoke to them on the phone and they realised their mistake, encouraged me to go to university.”

When public speaker and anti-bullying activist Lizzie Velasquez was 17 years old, she discovered that she had been titled “The World’s Ugliest Women” due to her disability: a rare congenital disease called Marfanoid–progeroid–lipodystrophy syndrome that prevents her from developing body fat.

In this powerful TED Talk she talks about the importance of self-description for everyone and asks: “what defines you?” (closed captions are available for this video).

You can find out more about Lizzie on her Youtube channel.

The power of participation

The User Voice and Participation (UVP) Team believe that the voice of the service user should inform our practice. Our aim is not only to make sure that the voices of young people are heard but also to facilitate participation groups that embody the meaning of participation, as defined by the young people that we work alongside.

This process is ongoing and always will be. Through this process we hope to help young people grow as individuals. We should not just take feedback from young people, but also give back in ways defined by the young people themselves. Examples of this include helping them develop confidence, providing Makaton training or interview skills advice.

“SYAS has helped me build friends but not just in SYAS, outside too, as it has given me confidence.”

SYAS will be changing. Currently our members are working to rename and rebrand the participation group so that it aligns more closely with how they self-describe.

As a group, not only will SYAS be redefining itself, but the young people will also be creating a report of preferred terminology.

“My disability is fluid.”

Due to recognition of the fact that people identify with different words in different ways, SYAS have decided to use a traffic light system to indicate whether words should never be used (red), that some people may be okay with some words (amber) and words that are more widely accepted (green).

“I would rather say I have additional needs than say that I’m disabled.”

“Everyone identifies with the word ‘disability’ differently. Some Deaf and Blind people don’t consider being deaf and blind a disability. But for me I am chronically ill so it doesn’t matter where you put me, I’m still in pain all the time. Some disability you might have a better experience, but with my chronic illness I am not gaining, I am only losing.”

Watch this space for more news on SYAS’s new name and how participation will be changing to be more accessible! In the meantime I will leave you with one last thought from our young people about the language around additional needs and disabilities:

“Honestly a lot of time it’s about asking. It is about how someone self-describes.”