Recent Newsletters can be found at our 2020 newsletters web page
DISABLED PEOPLE DESERVE RESPECT MORE THAN ONCE EVERY FOUR YEARS - Edited from article in The Independent by Liz Johnson Paralympian Swimmer
There’s nothing like a countdown to get the heart racing. As a Paralympian, I spent two decades of my life racing the clock, plunging into pools in the small hours to shave seconds off my time, willing my muscles to work harder, faster so that my hand could touch the side first. I’ve seen time freeze through a splash of water before climbing on a podium to have a medal looped around my neck.
The turning over of a 365-day sand-timer for the world, on 25 August marked exactly one year until Tokyo 2020 and the quadrennial Paralympic Games. Across the globe, athletes are training hard and completing time trials, and Japanese construction teams are logging hours to get their venues completed on schedule. As the days trickle down the year-long hourglass, Paralympic excitement will fully start taking hold.
But this year’s countdown to Tokyo 2020 still also serves as a stark reminder. The attention beginning to circle the games and GB athletes is making my heart race with excitement but also sink for those outside of sport. My attitude to the Paralympics has not changed – not one iota – but I’m increasingly aware and frustrated that the wider acceptance of disability hasn’t kept pace with our admiration for our phenomenal Paralympians.
As a society, we’ve settled into a steady rhythm around disabled people. Every four years we celebrate inspirational Paralympians and marvel that they’ve somehow “managed”, against all odds, to “suffer” through their disability and make it mean something. Suddenly, disabled people are on TV and on posters and our voices are being listened to. The 13.9 million people with disabilities in the UK finally get to see a positive narrative around our identity – that is, until the Paralympic two weeks are up.
When the fireworks fall silent after the closing ceremony it’s business as usual for our treatment of disability. This translates to constant discrimination both at a direct and indirect level, affecting every area of life. From lack of access at music festivals right through to physical and verbal abuse, disabled people are routinely shamed and disadvantaged for difference and valued below those we consider non-disabled. It’s the invisible discrimination and prejudice which is most insidious, however. Society fences in the disabled community with barriers that stop us progressing and then shakes its head in consternation when we’re not being able to get out.
Some of the biggest barriers the disabled community face are those in employment. While the UK may bag gold at international sports events, our track record of disability equality is far from shining: the British disability employment gap is a staggering 30 per cent. What’s even more appalling is that this massive gap hasn’t budged in the past decade.
We need to understand that disabled people are equally as talented as non-disabled people in every field, Paralympian or otherwise. Having a disability doesn’t take away from a person and being disabled isn’t automatically a negative: it’s society’s treatment that’s the problem, not someone’s body. You shouldn’t need to have a medal to mean something.
Almost one in five people in the UK are disabled yet you wouldn’t know it. Outside the Paralympics they currently don’t exist or are undervalued.
One year until Tokyo 2020 should be a wakeup call for our nation. It needs to be a countdown to more than just the games, but to a future where all disabled people are treated like Paralympians in whatever their chosen field. So, what are we waiting for? The clock is ticking. www.independent.co.uk/voices/paralympic-games-tokyo-2020-disability-ableism-liz-johnson-a9078251.html
Liz Johnson is a Paralympic swimming champion and is co-founder of The Ability People
CRUSE BEREAVEMENT CARE ARE LOOKING FOR NEW VOLUNTEERS!
Cruse Bereavement Care was founded in 1959 and is a national charity providing free advice, information and support to adults, young people and children who are struggling to cope with grief arising from bereavement, whenever or however the death occurred.
We always need more volunteers to meet the constant demand for our services. None of what Cruse achieves would be possible without the passion, dedication and skills of our volunteers.
We are currently recruiting for our next annual intake, the training for which will begin in January 2020.
If you think you have the skills and empathy to work with those who are bereaved and are interested in joining our team of committed and enthusiastic volunteers, we’d love to hear from you! Please visit www.cruse.org.uk/get-help/local-services/south/surrey-north/volunteering where you can download our information leaflet and application form.
You can also read about our volunteers and some of the people they have helped.
DRAMATIZE Get Online... Do you want to use a computer?
Why not come along and use ours. No need to book, please just drop in.
* The IT hub is open every Monday, 12-3pm.
* No care is provided but can offer guidance on navigating your way around the computers.
* Free of charge
* Printing costs 20p per sheet.
* Please note there is no disabled or changing places toilet at this site due to the venue facilities.
YES, I USE A WHEELCHAIR, BUT PLEASE ASK BEFORE YOU GIVE ME A PUSH - Edited from article in Independent By James Moore
Using a wheelchair for exercise has its trials. But they don’t arise from the pushing. I’ve written before about how annoying it is that people seem to think I’m incapable of tackling a hill, despite my going out in clothes liberally splattered with the Nike swoosh.
I wear them in an attempt to show that I’m doing what passes for jogging with legs that aren’t well adapted to that since having had a cement truck on top of me. I can walk on them with the aid of crutches but not well and it burns like hellfire. This is why I resort to wheels.
I have a chair with a detachable one that turns it into a three-wheeled ATV (all terrain vehicle). It was purchased at considerable cost. But even though I fancy it makes it look a bit sci-fi, people still don’t get the message.
Let me explain. I’d just approached the first rising ground I encounter on my regular route. It’s a short stretch but quite steep. As such, it takes a bit of time and quite a bit of effort to get past. I’ve checked my Fitbit. It registers a satisfyingly sharp rise in my heart rate.
I felt hands on my back and the chair taking off like the Road Runner being pursued by Wile E Coyote in one of those classic Looney Tunes cartoons. Except I didn’t feel inclined to say “meep meep”. I ended up shouting “no, get off, go away” because, excuse the profanity, it scared the s*** out of me.
“Need a push mate?” is a constant refrain. Note the number of four-letter words in that. Think about it. How would you feel if someone suddenly came up behind you, grabbed you, and started pushing you?
“I’m just trying to help,” the man responsible for giving me the sort of fright you usually only get from one of those horror films that relies on jump scares shirtily replied. It sure didn’t feel like help. It felt more like an assault.
Sometimes assistance is necessary because London was not built with disabilities in mind, much less the rest of the UK. Where it is needed it should be provided without fuss (which regrettably doesn’t always happen). But most people are perfectly capable of asking for it when they need it.
Disabled does not mean incapable. In fact, many disabled people deeply resent being constantly treated as if they are.
I understand that people offering assistance do so because they want to feel like they are fully paid up members of the human race. But believe me, unwanted help can be equally as bad as the lack of it when it is needed. And don’t even get me started on the aggressive response you sometimes get when you refuse it.
The incident I endured was one of those cases. #JustAskDontGrab on Twitter suggests I’m far from alone in experiencing this sort of thing. The forthcoming Paralympics – the build-up for which is just starting to crank up – will feature a lot of very capable disabled people.
Perhaps it could facilitate a real discussion about this. It’s sorely needed. www.independent.co.uk/voices/disability-wheelchair-exercise-consent-able-bodied-a9086531.html
THE MILLENNIAL WOMEN WITH ARTHRITIS – Edited from article in The Independent
Although it's commonly thought of as an old person's disease, arthritis affects 27,000 people under the age of 25 in Britain.
Arthritis is a disease that doesn’t discriminate against any age. There are babies who are born with it, teenagers who develop it and a whole host of other groups who are a just as likely to experience some form of arthritis.
As I write this article my fingers and wrists scream in pain while I repeat the same keyboard motion over and over. They will hurt like hell later. I was 14 when I realised something wasn’t right with my body. It was the beginning of 2011, and the aching in my foot that had started months before was getting worse and worse until I could ignore it no longer.
I was diagnosed when I was 15 and since then the disease has always been at the periphery of my mind. At that age, my thoughts were preoccupied with the fact that my auntie was getting married in two weeks and I was to be her bridesmaid, not the fact that my bones were beginning a journey that will eventually end with them being eroded away. Arthritis has the potential to dominate my entire life and I know that I am not alone.
Arthritis Research UK estimates that nearly 10 million people in the UK suffer from some form of the condition, with the most common strand, rheumatoid arthritis (RA), affecting more than 400,000 adults. This means that more than 1 per cent of the adult population has the disease. It is also believed that as many as 27,000 people under 25 are living with the condition in some form.
In a cruel twist of fate, women are three times more likely to develop arthritis than men. For women, the disease comes with its own set of problems that are unlikely to be experienced by male sufferers. Pregnancy, messed-up hormones or the simple act of not being able to wear fancy shoes are just some of the things that female sufferers have to contend with.
But what exactly is arthritis? This a complicated question as there are actually more than 200 types which can affect the body in different ways. In a nutshell, arthritis is a name given to a group of conditions that cause joint pain and inflammation. RA is an autoimmune disease where the body’s immune system targets the areas around the joints, causing inflammation, swelling joints and varying levels of pain. Over time, the joints and bones will begin to wear away.
Nicolle Okoren was 14 when she was diagnosed with rheumatoid arthritis. “The pain started in my wrist,” she says, massaging her joints while she does so. “I was taking piano and violin lessons so doctors initially thought it was carpal tunnel syndrome from playing so much. But then my ankles and feet started killing. Soon it was my knees and my elbows. It spread so quickly. I remember spending most of that summer in bed, unable to move because everything hurt so badly. I was actually walking on the sides of my feet because putting pressure on my ankles hurt so much.”
A study in 2009 found that 73 per cent of all rheumatoid patients have at least one side effect associated with a drug. Furthermore, at least 16 per cent of patients have been forced to stop using it altogether. “When I was on Methotrexate it completely messed up my gut,” Okoren says. “I have to be extremely cautious of what I eat now because my medication has caused my stomach to become to so ulcer-ridden.”
“People often don’t see the disease and don’t really believe you,” claims Okoren. “I would push myself way further because I felt I had to adjust to other people’s view of ‘normal’. It’s created a complex where I often don’t trust my feelings.”
A 2018 study published by charity, Versus Arthritis, estimates that at least 73 per cent of all 16-34 years old with the condition feel loneliness of a regular basis. Furthermore, at least 54 per cent of young people have experienced mental health problems including depression or anxiety since being diagnosed.
“I’ve really learnt how strong and independent I am because of my condition,” Okoren says. “I know what it feels like to hurt so badly or to feel so alone in it and not see an end in sight. I have a lot of compassion for anyone who feels pain. I think that it is a really beautiful thing.”
“I’m grateful for my arthritis. I’m not happy that I have it, but I am grateful.” www.independent.co.uk/independentpremium/long-reads/creaky-bones-jeuvenile-arthritis-millennial-women-disease-a9058016.html
BAYWATCH RESULTS 2019 - 1 IN 5 BAYS IS ABUSED – Edited from Disabled Motoring UK (DMUK) September 2019
DMUK would like to thank everybody who participated in this year’s Baywatch Campaign. Our total number of responses was 723. We’d also like to thank all of our supporting organisations that promoted the campaign and encouraged their members/supporters to take part.
The overall level of disabled parking abuse across all supermarkets was 16%. In 2017, when we last carried out the Baywatch Campaign it was 18.5% and therefore this year’s results do show some improvement.
Looking generally at enforcement signage, 60% of the supermarkets surveyed had visible signage or other evidence that enforcement took place. However, the 40% that had no visible indication of enforcement taking place the percentage of abuse increased dramatically to 36%. This shows that using enforcement does decrease the levels of disabled parking abuse.
All of the supermarkets that were surveyed have been contacted with the Baywatch results. We’ve encouraged them to start a dialogue with the charity so that we can help them improve their parking facilities for disabled motorists.
The table clearly highlights the effect that enforcement has on levels of abuse. Across all the supermarket chains surveyed there were car parks which had no signs of enforcement. We call on all supermarkets to rectify this and to use enforcement across all of their stores. www.disabledmotoring.org/baywatch/baywatch-aresults-2019
Baywatch will return in 2021 and we hope to see a further decrease in the levels of disabled parking abuse in supermarkets.
DMUK has worked for many years with the British Parking Association (BPA) to improve parking for disabled motorists. This year the BPA has further shown their commitment to the work of DMUK by sponsoring DMUK Baywatch 2019.
PROPOSAL FOR SCAN BLUE BADGE PARKING BAY ABUSE SURVEY
Following the conclusion of the Biennial Disabled Motoring (DMUK) Baywatch survey with the publication of the 2019 results, SCAN believes it would be helpful if we could assess how widespread the problem of parking bay abuse is at Supermarkets locally.
The survey period will be a minimum of one week and when we have setup a date, (after discussion at our AGM) we will issue a short form for all participants to complete for every supermarket visit made during the survey period.
Questions will include;
How many Blue Badge spaces have been provided?
How many vehicles in the Blue Badge spaces are NOT displaying a badge?
Is there signage indicating that enforcement of the spaces takes place?
If you regularly experience problems getting access to Blue Badge spaces at your local supermarket, and would like/are able to help us with this assessment by taking part in this survey, please contact SCAN at email@example.com text 07853 038933 or please come along to our AGM on Wednesday 6th November when we will be happy to discuss the issues and take your contact details.