July 2019

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Disability Rights UK (DRUK) – News In Brief   
To contact Disability Rights UK (DR UK) see www.disabilityrightsuk.org/contact-us

Bronze-medal winning Paralympic basketball player, Matt Byrne was “refused” entry to a Dublin to Birmingham Ryanair flight after he was told that the pilot would not let him board.

The wheelchair basketball star is demanding an apology from the airline for refusing him access. The 44-year-old told The Independent: “I was waiting on the lift to get on board when a member of staff said, ‘The pilot’s not taking you.’ I said, ‘What do you mean he’s not taking me?’ He said, ‘Because we’re running a bit late, he’s refusing to take you.’”

He added: “I don’t complain about much, but I was disgusted. It felt cruel and humiliating. It’s 2019 – you can’t have people doing that to you. It’s just wrong.”

Mr Byrne said he had arrived at Dublin airport at 6.45pm, leaving plenty of time to tell staff from OCS – the company that operates the lift for disabled passengers – that he required assistance to get on his flight at 8.50pm. He said there had been “a slight delay of around five minutes” getting the lift ready to take him on board before he was told the pilot was refusing to take him on board.

After being denied his place on the plane, he had to wait over two-and-a-half hours to board the next one leaving for Birmingham.

Mr Byrne is paraplegic, meaning that he has an impairment in motor or sensory function of the lower extremities. Mr Byrne said long hours of chair sitting can increase the risk of pressure sores.

“The next flight was delayed until 11.30pm, so I didn’t finally get back home to Nottingham until 2.30am,” he said. “The whole journey from Dublin city centre took around nine hours. I could have gone to America in that time.”

He added: “I haven’t had a good explanation. The pilot must have seen me waiting on the lift. It takes five minutes to lift me on. I’ve been all over the world to represent Team GB and haven’t had anything like this happen before. I certainly want to get apology. More than anything else, I want to make sure it doesn’t happen to anyone else.”

Mr Byrne said he had received an email from Ryanair saying the company was now investigating. A Ryanair spokesperson told The Independent: “While we regret any inconvenience caused, special assistance services at Dublin Airport are operated by OCS – at great expense to the airlines.” A spokesperson for OCS said the company had no comment to make.

Stockport Mayor, Cllr Laura Booth is an amputee and wears flat shoes to help her walk. She told The Independent “I attended an event on Monday morning in my borough, it was a local independent bakery that was celebrating its 90th year. It was three generations that had had the bakery. I was wearing perfectly normal clothes.” Her choice of shoes enabled her to attend the event on foot rather than in her wheelchair.

After staff from Hobson’s bakery in Reddish posted an image of the celebration to a Facebook group dedicated to Stockport nostalgia, criticism flooded in, Cllr Booth said.

Facebook users said she should “get back in your caravan”, “Look at the state of her,” and “a mayor in trainers [disapproving face emoji]” were among the abusive comments.

The Stockport councillor said “I replied and said, factually, that they’re not trainers, they’re shoes. I’m an amputee so I have to wear flat shoes, I can’t always wear the most flattering footwear.

“The problem for me is that if you come back, when it’s disability-related, and say you find something offensive, you get these deflecting techniques. Commenters often suggest people with disabilities are “oversensitive”, she said, adding that social media can become “this toxic echo chamber”.

Cllr Booth added: “Disability awareness is positive, but disability inclusion – to have someone with lived experience in public life – I’m showing people that you can reach the higher levels of public life with a disability.”

After she posted about the incident on Twitter, users rallied around her with supportive messages. “Rather have a mayor in flat shoes with integrity then someone in heels so high their heads in the clouds,” said one.

Another added: “The whole convention of wearing heels to be official and professional is overdue a rethink, on health grounds alone, so bravo to you for speaking up on this.”

Promoting the inclusion of people with disabilities will be the focus of her year as Mayor, Cllr Booth said.

PARKINSON’S PATIENTS ACCUSED OF BEING DRUNK – Edited from The Independent April 2019  
Research by charity Parkinson’s UK of more than 2,300 respondents, has found nine out of ten people with Parkinson’s disease - a degenerative neurological condition which can develop at any age - say they have been harassed or discriminated against. One in five (22 per cent) said slurred speech or balance issues have led to accusations that they must be drunk, with some being sworn at or labelled a drug addict.

Emma Tumelty, 49, from Whitehaven, Cumbria was queueing in a chemist to get her medication when she was harassed. “This woman came up to me and said in a really nasty tone – ‘what’s wrong with you? Do you need a fix or a drink or something love?’ I was gobsmacked,” she said.

Ms Tumelty has a blue badge to use disabled bays but said she was accosted by a man at Asda. “He started shouting at me, ‘there’s f*** all wrong with you – it’s people like you that make it hard for everyone else’,” she said.

Parkinson’s UK has launched a new campaign in a bid to address misconceptions about the condition and reduce the negative experiences of people with the condition.

Steve Ford, chief executive of the charity, said: “It’s heart breaking that so many are cancelling or avoiding social situations due to embarrassment about their Parkinson’s symptoms, or fears about how people will react to them.”  

A WOMAN HAS ABILITY TO SNIFF OUT PARKINSON’S DISEASE – Edited from The Independent March 2019  
Joy Milne, a retired nurse from Perth in Scotland, noticed a “musky” smell from her husband Les before he was diagnosed with the neurological disease in 1985.

Now scientists have managed to track down what initially triggered the tell-tale odour.

The breakthrough came after Ms Milne approached a researcher at a Parkinson’s UK lecture. This ultimately led to a Manchester University study that began in 2015, inspired by her apparent ability to smell a substance associated with the condition.

“What we found are some compounds that are more present in people who have got Parkinson’s disease, and the reason we’ve discovered them is because Joy Milne could smell a difference,” Professor Perdita Barran, a lead author of the study, told the BBC.

The scientists designed experiments to mimic Ms Milne’s sense of smell by using a piece of equipment called a mass spectrometer.

The “volatile biomarkers” they identified could help to develop a simple test for early detection of the disease. “What we might hope is if we can diagnose people earlier, before the motor symptoms come in, that there will be treatments that can prevent the disease spreading. So that’s really the ultimate ambition,” said Prof Barran.

Ms Milne has such a powerful sense of smell that she also claims to be able to identify other diseases, including cancer. She intends to continue collaborating with researchers to develop more smell-based tests.  

For the first time, scientists have shown how changes in the brain explain improvements to other senses – a phenomenon that has inspired comic book superheroes like the Marvel character Daredevil.

Some visually impaired people are able to train themselves to use clicks as a type of echolocation to detect obstacles.

The latest research from the University of Oxford and a number of US universities tracked people who were blind at birth or lost their sight as children. They found their increased abilities may be possible because their hearing is much more finely tuned to variations in frequency.

Anyone who has heard a passing ambulance or police siren will be familiar with the way the sound appears to change pitch. This phenomenon, known as the Doppler effect, is caused by a relative change in frequency of the soundwaves. Being tuned into subtle differences in everyday noises may help blind people interpret their surroundings.

“For a sighted person, having an accurate representation of sound isn’t as important because they have sight to help them recognise objects, while blind individuals only have auditory information,” said Kelly Chang, one of the study's authors from the University of Washington. “This gives us an idea of what changes in the brain explain why blind people are better at picking out and identifying sounds in the environment.”

The findings are published in two papers. One study in the Journal of Neuroscience used MRIs to scan the brain activity of blind subjects and test how finely tuned their neurons were to subtle changes in frequency.

The second study, published in the journal Proceedings of the National Academy of Sciences, looked at how a region of the brain devoted to tracking moving visual objects in sighted people is rewired to focus on tracking these auditory movements.  

BLIND ACTOR & COMEDIAN BELIEVES ‘ABLE-BODIED ACTORS SHOULD TELL OUR STORIES TOO’. Edited Item by Chris McCausland for the Independent February 2019  
An ongoing controversy: should able bodied actors really be taking on roles of disabled characters, or should such roles only be awarded to disabled actors?

Chris Mc Causland says ‘I’m a stand-up comedian and actor who has benefited from the desire of a very small number of writers, producers and directors, to not only increase the on-screen visibility of characters with disabilities, but also to authentically cast disabled actors in these roles. Basically, I've played a few blind guys on the telly and I am grateful for those opportunities.

In spite of this though, I do not believe that all characters with disabilities need to, or should be played by actors with that disability, and to be honest, I find the outrage surrounding this issue to be quite ridiculous.

A movie or TV show of note will require that certain parts are played by actors with a significant level of profile; people need to know who they are. Let's be honest, it's how the finished productions are marketed, and even how they get commissioned and secure investment in the first place. Without that weight of celebrity maybe the film doesn't get made, or if it does, it gets made for a significantly lower budget, in turn has a much smaller release, and is therefore seen by far fewer people. Basically, it becomes a different film.

To make this issue relevant to my own disability, would the movie Scent of a Woman have been such a commercial and critical success, if, instead of Al Pacino, there was an unknown blind actor playing that part? Would an unknown blind actor even be capable of achieving a fraction of the level of performance that Pacino put into that role? I certainly wouldn't.

The bottom line is that actors act. They take on roles that are outside of the scope of their own life experiences. What's the harm in that? If however, profile or vast experience is not a consideration when casting a disabled character, then yes, it would be greatly appreciated if disabled actors were considered for as many of these roles as possible.

There simply aren't enough opportunities for disabled actors to work. Where gay actors are routinely cast to play straight characters, or characters where their sexuality is not relevant, disabled actors are almost never considered or sought out to play a character unless disability is specifically written into the script and key to the storyline.

Committing to providing greater opportunities for disabled actors should include writing disabilities into more roles where it is irrelevant to the storyline. Similarly, disabled actors should be considered to play characters where a disability has not been written into the script, but that ultimately would not hinder the plot.   

The full article can be found at www.independent.co.uk/voices/bryan-cranston-the-upside-disability-blind-ableism-whitewashing-trevor-noah-a8777831.html

YES, I'M DEAF. BUT THAT DOESN'T MEAN I CAN'T HEAR WHAT YOU'RE SAYING ABOUT ME – Edited item by Liam O’Dell for the Independent May 2019  
I’ve heard all the same deaf jokes before. Sorry? What? Pardon? whenever I tell someone I wear hearing aids and have a mild hearing loss, the odd few like to try their luck. It may seem harmless, but as the deaf community celebrated Deaf Awareness Week (in May), the retort is likely to emerge once again and reinforce the damaging misconception that deaf people are ignorant, stupid or cannot listen.

The issue lies with a lack of support and accessibility. For instance, employers are failing to implement reasonable adjustments in the workplace and as such reject job applications from deaf people. In many ways, deafness – and indeed, disability as a whole – is still viewed predominantly from the perspective of what people can’t do.

While of course it is fair to state that being deaf means we struggle to hear certain things, it’s wrong to say that a loss of hearing affects our listening skills. If anything, it actually makes us more alert when it comes to visual cues, to the extent that we can experience “concentration fatigue” when we have to process too much information without the help we need. The problems start to occur when being unable to hear is interpreted as being unable to do other, unrelated tasks.

This notion only feeds into the isolation, discrimination and self-esteem issues deaf people can face. It should always be down to the deaf person in question to recognise their own potential and acknowledge where difficulties may arise. We’ve seen what happens when deaf people are allowed to flourish: their contribution to wider society is positive and fulfilling.

We are attentive, to the extent that we’re making people listen to us. Deaf campaigners have made the UK government change its stance on a BSL GCSE and taken steps to improve subtitles at UK cinemas. In my case, I’ve called out an inaccessible rail system which fails to keep deaf passengers updated and explored how the emergency services support deaf people. As a community, we are proactive.

We’ve already seen incredible steps forward for deaf representation in the arts, such as the Oscar-winning short film The Silent Child, deaf actors starring in the hugely successful zombie drama The Walking Dead, and deaf theatre productions in London.

The stereotype that deaf people can’t and don’t listen is still present in our society and underpins much of the discrimination faced by members of our community. Hearing people need to listen to us, listen to our stories, and see how we are fighting the injustices we experience every single day.  

BLOOD TEST FOR CHRONIC FATIGUE SYNDROME STUDY- Edited from The Independent April 2019  
ME/CFS is diagnosed based on symptoms, which include debilitating fatigue after physical exertion, muscle and joint pain, sensitivity to light and the exclusion of other causes. The lack of a conventional test means sufferers often face unwarranted stigma from the public and health professionals.

For the US study lead by Stanford University, Professor Davis and colleagues developed a test which is capable of measuring minuscule energy changes in cells in the blood to gauge their health when exposed to stress – in this case salt. In trials with 20 ME/CFS sufferers and 20 healthy volunteers, the salt caused a big spike in the cellular energy in the samples taken from people with chronic fatigue, suggesting they’re overreacting to this stress. Professor Davis was motivated to research the condition as his son has been living with CFS for a decade.

If this turns out to be a reliable test for ME/CFS it could also help guide research into new treatments to reduce this immune response, as until now it wasn’t possible to tell if drugs were having an effect at the cellular level.

Professor Ron Davis is a senior author of the study published in the journal Proceedings of the National Academy of Sciences.