Did you know that Blind people sometimes need subtitles on videos?
Strange and nonsensical as it may seem, like a ‘how to speak French’ book being translated into French, this is a very real and very necessary accessibility requirement. This is because Blind users who watch online videos need any written words on screen, such as title cards or diagrams, to be transcribed so that their screen readers can read them as a transcript. Once explained this seems pretty clear, but why would a sighted person ever guess that this was a requirement? Not knowing this, someone writing subtitles might assume that just because the text was already on screen there is no need to write it out again in the subtitles. This is one of the many challenges to overcome when making online spaces accessible: not all accessibility requirements make sense to an able-bodied reader on first blush.
Another example is tables. If a table is laid out with labelled columns and labelled rows, the top corner of a table is often left blank. However, this is also a problem because often a screenreader reads across the rows one at a time, and the Blind person is creating a mental picture of where the different pieces go. If there is a section left blank, it can cause the columns to become out of step with the rows making the entire table impossible for the Blind person to properly parse. The solution to this is to mark the blank space with some alt text that the sighted user never needs to see but which allows a screen reader user to understand how the columns and rows fit together. Once again, a relatively simple fix that nevertheless may not have seemed necessary to many sighted people.
There are many other such examples, of things that may be vitally important for some Disabled users but are unfortunately often completely mystifying for able bodied content producers to understand. To face this problem, the key weapons in our arsenal have to be curiosity and open mindedness. Being curious about the reasons behind accessibility guidelines can help us gain a greater understanding of them. Meanwhile, being open minded to new information, even if it may seem strange or nonsensical to us at first, can allow us to avoid the pitfalls that can keep our online spaces from being accessible to all.
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.
Many of the young people were disappointed that a potential opportunity for representation of girls with autism was overwritten by ableism:
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:
Overall, ATLAS members did not feel that the casting of ‘Music’ was positive.
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.
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.
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.
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.
ATLAS recently talked about the use of restraint in schools for managing the behaviour of young people with additional needs and disabilities:
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:
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.
Harry Potter, the famous young wizarding student at Hogwarts School of Witchcraft and Wizardry took the world by storm and continues to be an important part of many people’s childhoods and lives. Some trivia for you:
Did you know that the actor who plays Harry Potter, Daniel Radcliffe, has Dyspraxia?
Dyspraxia is a developmental co-ordination disorder (DCD) that impacts the way the brain processes information, resulting in movement and co-ordination difficulties. A person’s organisation, memory, concentration and speech can also be affected. Up to 10% of the population are thought to have Dyspraxia, despite this, it is a relatively unknown condition.
From a young age, Daniel knew he struggled with certain things in life and had difficulties with school and his self esteem. As a result, his mother enrolled him in acting classes and from there his dream to be an actor was born.
At the age of nine, he made his first big break in the BBC’s David Copperfield, followed by a role in The Tailor of Panama. Then between 2001 and 2011 he captured the imagination of children, young people and adults across the globe with his portrayal of Harry Potter.
Daniel Radcliffe uses his fame to raise awareness of Dyspraxia, how it impacts individuals, and tackles the stigma that having an illness or disability means you cannot achieve your dreams.
It has been difficult for Daniel to shake off his portrayal of Harry Potter, the boy who lived, when looking for other roles as an actor. However, he has gone on to win numerous awards. He doesn’t act for the money, fame, or to be the best, he is living his dream.
People with Autism Spectrum Disorder (ASD) experience the world differently. They have different strengths and weakness and they may behave differently to the people around them. Everyone with ASD is different!
My mum and me were receiving support from White Lodge because I was finding it very hard to communicate and I was having ‘moments’. For me, moments are when I struggle with a lot of things and I get frustrated. The staff at White Lodge recommended that we see a doctor that they knew, who diagnosed me with ASD when I was 3 and half years old, which was very helpful.
Girls with ASD are underdiagnosed because they don’t meet people’s expectations due to stereotypes. My mum did not anticipate my diagnosis with ASD.
My life has changed quite a bit since I was diagnosed. Obviously not everyone has ASD, I am aware that I am quite different to other people. In my experience there are both positive and negative impacts of having ASD.
I am different to other people
It would be boring if we were all the same!
I think about problems differently and come up with different solutions.
I express myself differently to others
Some people with ASD communicate differently. For example, some people can’t use their voice.
I speak three languages to help me communicate: spoken English, sign language (Makaton/British Sign Language), using feelings boards/bracelets/cards.
Due to my experiences in life and my participation in ATLAS, I am able to appreciate other people’s perspectives.
When I speak to people that I know well, I have a lot to share about my interests and experiences
I know a lot about sensory toys!
I find it hard to make eye-contact
People might not think I am talking to them or that I am talking to somebody else if I don’t make eye contact.
I find it hard to keep a conversation, for example to keep focus and keep on subject.
I find it hard to manage my feelings, emotions and thoughts.
Loud noises, crowds, small spaces, lock rooms, flashing lights and the dark are difficult for me to cope with.
Flashing lights can include discos lights and even emergency vehicles!
I am very sensitive to touch.
I don’t tend to like people touching me, it feels uncomfortable. I don’t always know if people are going to be gentle and nice when they touch me and that makes me anxious.
Transport can be difficult because I don’t like long journeys.
All the sounds and people can be overwhelming.
Sometimes people come too close when I am travelling.
It can be difficult to speak to people that I don’t know.
When you meet someone with additional needs, such as ASD, you shouldn’t make assumptions because you don’t know that person.
“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.”
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
The mind map reads:
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
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
Meet and speak with other people with additional needs and disabilities
Quotes from young people
When working with the UVP Team:
The impact of participation on professionals:
Young person with Autism at university:
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.
Lady Gaga is an American singer-songwriter, record producer, actress, and businesswoman. As well as publishing multiple hit singles and albums, she also owns her own cosmetics brand (Haus Cosmetics) and founded a non-profit organization, the Born This Way Foundation. It focuses on the empowerment of young people, improving mental health, and preventing bullying.
She also has mental health difficulties, and fibromyalgia.
What is Fibromyalgia?
Fibromyalgia syndrome is a chronic pain condition. It usually presents with widespread pain and chronic fatigue, but you can experience a wide variety of symptoms. Something a lot of people with fibromyalgia experience is cognitive and memory problems, which is referred to as ‘fibro fog’. At this time, there is no cure for fibromyalgia, although some medications and other therapies can help improve its symptoms.
Lady Gaga’s experience
She shows how this affects her in her documentary, Gaga: Five Foot Two. She has needed to cancel tours and shows because of her health conditions. Shown below is an image of her receiving medical treatment for her chronic pain. It is taken from her documentary.
She speaks about her chronic pain a lot, to raise awareness about it. She manages her condition well, and something that contributes greatly to this is her access to the latest procedures and top-quality doctors. Even with this, she still experiences debilitating pain.
Lady Gaga talks about her chronic pain:
“I get so irritated with people who don’t believe fibromyalgia is real. For me, and I think for many others, it’s really a cyclone of anxiety, depression, PTSD, trauma, and panic disorder, all of which sends the nervous system into overdrive, and then you have nerve pain as a result.”
“People need to be more compassionate. Chronic pain is no joke. And it’s every day waking up not knowing how you’re going to feel.”
“You will hear the pain in my voice and in some of the lyrics, but it always celebrates.”
“I’m a fighter. I use the word ‘suffer’ not only because trauma and chronic pain have changed my life, but because they are keeping me from living a normal life.”
“I hope that people watching it that do struggle with chronic pain know that they are not alone. […] see me dance and sing, to know I struggle with things like them and that I work through it and that it can be done.”