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.
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.”
The evolution of personal mobility aids is very linked into the way society viewed, or was aware of, people with reduced mobility. If we look back to the Middle Ages, for example, society didn’t feel responsible for people with reduced mobility or other disabilities. Many disabled people lived as outcasts in a society full of superstition.
One of the very first wheelchairs we know about is from the 5th century B.C. and is this blog’s featured image.
Depicted in this ‘wheelchair’ is Confucius, a famous ancient philosopher and teacher. It was a very rudimentary version of a wheelchair, but was a wheeled device used with the intent of helping people with reduced mobility, so is presented here as an example.
Walking sticks have probably been used for thousands of years. Ultimately, in a rudimentary form you can just pick up a branch and use it to help you walk. However, the time at which these were used more as mobility aids rather than like hiking sticks is unclear.
Mobility aids started to develop much more around the 15th century.
The oldest known use of a walking frame in England is depicted on a piece of clothing from the 14th century. It depicts either the young Virgin Mary, or Jesus, learning to walk using a three-wheeled frame.
In the 15th century, Queen Elizabeth of Spain set up a hospital where soldiers were provided with prosthetic and therapeutic devices, and they would also receive a pension. During her time as queen, institutions for children, blind, deaf and disabled people were also created. Her husband, King Felipe II, used a wheelchair which was quite elaborate for its time. It had arm and foot rests.
But it was only in about the 18th century that wheelchairs were invented that look like the ones we use today. This wheelchair had two large front wheels and a small rear wheel one on each side.
In the 19th century, wheelchairs were made mostly out of wood and wicker. They became popular in the USA, especially amongst veterans of the Civil War (and later on, WWI).
The first folding wheelchair was designed by a pair of engineers in 1932, after one of them had an accident with a landmine during WWI.
Though the first electrically driven wheelchair was created in 1924, the first electric wheelchair was invented after WWII. Lots more soldiers who suffered spinal cord damage in the war had survived, due to advances in technology and medical knowledge, which meant there was a greater demand for wheelchairs.
There had been many improvements to manual wheelchairs, but if you were quadriplegic, you were unable to use a manual wheelchair without the assistance of another person. So, thanks to support from the Canadian Government and other scientists, George Klein invented the electric wheelchair. This enabled people who did not have the energy or mobility to use a self-propelled wheelchair to have more independence.
In the 60s and 70s, mobility scooters and rollators appeared, and walkers similar to the ones used today came into development.
These came about for the first time in the late 60s. They were quite successful, and seen as alternatives to the electric wheelchair. They were designed for people who could walk, but who couldn’t travel long distances on foot because of problems in their knees or arthritis.
A walker is the most stable walking aid. It is made of a frame which you place in front of you and hold onto during movement. These have been used for a long time, but were usually wheeled. In the 70s, walkers more like the Zimmer frames we see used today were created. They were usually made of metal.
A rollator is a type of walker that has three or four wheels on it. It also usually has a built in seat, which allows the person using it to stop and rest when needed. Rollators often have a shopping basket attached.
It was invented by Swedish inventor and polio survivor, Aina Wifalk, in 1978.
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.
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.
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.
Our role in ableism
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.
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.
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.
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.
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).
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 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.
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).
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: