November 2020


Previous Newsletters can be found on 2020 newsletters, 2020 COVID Newsletters or the Archived Newsletters pages

Disability Rights UK (DRUK) – News In Brief 
We are the leading charity of its kind in the UK. We are run by and for people with lived experience of disability or health conditions.

Our key decisions are made through our members who elect the Board of Trustees: and by our Senior Management Team.

We work with our members to influence national policy on independent living, benefits, education, employment, transport, human rights and other issues – shaping policy through direct experience and expertise.  We also work with our local individual and organisation members to empower and to influence local policy and services.

To contact Disability Rights UK (DR UK) see www.disabilityrightsuk.org/contact-us

SAFE USE OF PUBLIC TOILETS DURING THE PANDEMIC – Edited From www.Arelle.Com   
As things continue to get back to “normal”, more and more of us are venturing out and about. And inevitably, there are going to be times during these outings when we might need to visit a public toilet, whether that’s in a restaurant or pub, shopping centre or beauty spot. But just how safe is it to use a public toilet during a pandemic – or indeed how risky? Read on to hear our thoughts on the subject:

What Are The Concerns About Public Toilets And Coronavirus?  
Shared toilets have the same hazard of any public space – particularly when it comes to surfaces. Door handles, toilet seats, flushes, taps and soap dispensers are being touched by any number of people passing through these areas, so it’s important to be very aware of this. And of course, public toilets are generally small spaces, so social distancing can be challenging, unless everyone is behaving equally responsibly. Add to that potentially poor ventilation and the so-called “toilet plume” – the infectious droplets in the air that arise from a toilet after it has been flushed – it’s not surprising that a lot of us are a little concerned about the safety of public toilets during a pandemic.

What Precautions Can We Take When Using Public Toilets?    
Wearing a mask is the first thing you should consider – and if others using the toilets are not wearing masks, then perhaps you should look elsewhere! Avoid touching any surface with your bare hands – or wear a pair of disposable gloves, and make sure you throw them away as soon as you leave. If you have wipes or a disinfectant spray, you can always use these to clean surfaces you might need to touch.

Using a toilet cover – as long as it’s one you provide rather than one being provided – is a good idea to create a barrier between you and the toilet seat. Taking your own toilet paper reduces the risks further. Putting the lid of the toilet down after using it before flushing will avoid toilet plume – and remember to stand away from a toilet that has an automatic flusher. And, most importantly of all, wash and dry your hands thoroughly after using the toilet.

What Are Those In Charge Of Maintaining Public Toilets Doing?    
In some establishments and in some local authority areas, a one person in, one person out limited entry system is being encouraged which certainly increases public safety. With some places, alternate toilet cubicles and wash basins are being closed off to limit use and enable better distancing. In all cases, cleaning rotas should have been increased (with a cleaning rota on display) and there should be clear signage reminding people of all the precautions they should be taking. But if you see that a public toilet is busy, or not particularly clean or well-maintained, it would definitely be worth looking for another option.

SURREY COMMUNITY ACTION NEWS  
Message From Jason Gaskell, Chief ExecutiveEdited  
https://mailchi.mp/e12cdcae82a6/surrey-community-action-newsletter?e=0ecdfc4667 
As I was halfway through writing this introduction, in which I planned to mention the gradually rising Covid-19 infection rate in Surrey, I got an email confirming that Elmbridge is the first Surrey Borough to move to Tier 2 on the Government's Covid-19 alert system. It comes at a time when the Local Resilience Forum Welfare Cell is gearing up to respond to increased requests for support from Surrey's residents.

Whilst we don't expect the situation to be anywhere near as dire as the first week (months?) of lockdown, we are all keen to make sure that Surrey's systems and processes are geared up ready to respond to whatever Covid-19 throws at us next. I'd like to offer thanks in advance to all those charities and community groups who will step into the breach again to provide invaluable support to their neighbours and communities.

The Local Resilience Forum Recovery Cell is keen to understand the funding gap that charities and community groups across Surrey are experiencing so that we can understand where the needs are, who is at risk, and how statutory bodies, funders etc can respond most effectively. 

We will be doing some more formal research on this topic soon (and will be asking for your help again) but in the meantime, I would appreciate hearing about your financial challenges as we look back over the last six months and prepare for an uncertain future.

I'm keen to hear your thoughts on whether you are using reserves to stay afloat? How long you expect your reserves to last? Have you had to reduce service or staff to survive? Have you had to consider closure? None of these questions is comfortable to answer (or to ask for that matter!) but if we are to campaign for packages of support for our sector, we do need to understand the scale of the problems we face.

Please drop me a line to jasong@surreyca.org.uk or give me a call on 01483 447 100. Anything shared with me will be treated in strict confidence and will be anonymised and aggregated to create a Surrey-wide picture for the Recovery Cell.

Finally, it's worth noting that according to the Office for National Statistics, almost two-thirds of us are worried about the physical and mental health of our family members during Covid-19, but less than half of us are worried about our own physical and mental health.  While such altruism is good to see, please make sure you take time to look after yourselves too.

SURREY COMMUNITY ACTION IS TAKING ITS SUCCESSFUL MONEY MATTERS ADVICE SERVICE ON THE ROAD.  
Money Matters offers information and advice, usually in community settings but more recently over the phone and via online video, to make day to day budgeting easier to understand and money go further for people on low incomes.

Now thanks to funding from the National Lottery Community Fund, which distributes money raised by National Lottery players for good causes and is the largest community funder in the UK, Surrey Community Action is opening pop-up cafes in various locations across Surrey, where people will be able to benefit from free advice.

Advice on offer is wide ranging and includes money saving tips on food and household bills, help to switch energy suppliers and apply for the Warmer Home Discount Scheme or other charitable grants, debt signposting, scam awareness, budgeting activities and registering for the Priority Service Register.

Pop-ups will be located outside community centres, on high streets and near leisure facilities and aim to be a preventative measure in local communities to support people before financial issues escalate.  Although the pop-ups are open to anyone in need, we are particularly interested in reaching people on low incomes, families with young children, older and vulnerable people and those with health issues.

Friday 27th November 11.00am - 3.00pm – Sunbury High Street   
Find out more about Money Matters at https://surreyca.us7.list-manage.com/track/click?u=d191e5a601c6aee03bf036f80&id=42c0589caf&e=0ecdfc4667

Disability Empowerment Network (Den) - North Surrey         

YOU DON’T LOOK SICK: ‘My Lungs Are Broken But People Don’t Think I Am Disabled’  Edited from an archived series published in Metro.co.uk telling the stories of people with invisible illness and disabilities.

There are 13.9 million disabled people in the UK, but for many of them, you would have no idea anything is wrong. Lots of people suffer from debilitating symptoms and daily struggles but when they are out in public, they are challenged when they use priority seats or disabled parking. They’re told ‘but you don’t look sick’ because they don’t use a wheelchair or something people associate with disability.

Kim Lam, 32, from Aberdeen, has Chronic Obstructive Pulmonary Disorder (COPD), a condition which causes long-term inflammation of the airways. COPD usually affects older people and people who are heavy smokers but Kim was in her 20s and had never smoked.

Outwardly, Kim looks like a normal healthy, young woman but her condition means an intense schedule of medication and breathing exercises just to make sure her lungs can cope each day. On a good day, she can leave the house and do normal day-to-day things but she has to be careful not to over exert herself. But when she uses things like disabled parking spaces, she has faced judgement. She explains: ‘My condition really can vary, I can have a really good day, go for a walk, go to the gym etc and feel fine, but just as quickly, I can feel very ill the next day. It’s just about balance and being careful – not overdoing it, but not being afraid to challenge myself slightly. ‘I have had people say things like “but you don’t look sick”.

On one occasion, I had parked in a disabled spot in the shopping centre (with my disabled badge) and got a scathing remark from a young couple who were with their baby in a pram. The woman had retorted that those spaces “are for disabled people only”. ‘I was too shy at the time to speak up but my boyfriend at the time screamed back and asked if she had any idea what condition I had and told her she shouldn’t be judging people based purely on their looks.’

Kim, who works as a marketing manager, was diagnosed when she moved from Scotland to London for work and suddenly her health deteriorated. She explains: ‘After about three months of living there, I noticed I was getting more and more breathless, experiencing what seemed like severe asthma attacks. ‘I struggled going up one flight of stairs and sometimes when my body was run down, even just walking at a fast pace got me out of breath. ‘I started seeing a chest/respiratory specialist in London, where continuous tests were run from MRI/CAT scans, blood tests, breathing tests etc. ‘I was hospitalised about 11 times over two years in London, all because of an inability to breath properly or constant chest infections. ‘Eventually, I moved back to Scotland with the support of my work and doctor, to see if a less polluted environment would make any difference. ‘Under a new respiratory team in Scotland, I was eventually diagnosed with COPD.

I got to the stage where I was fed up of the constant battles, I didn’t want to continue a life with hospitalisations, ill health or for it to ‘get in the way’. ‘At the time I felt like it was a poor quality of life. I couldn’t understand all the suffering nor what my purpose was. And for those two months, it was either non-stop crying or I was staring into space ruminating over everything. ‘I couldn’t speak much, not even to my family or friends, who were there by my side and every step of the way, willing me to get through. I couldn’t get out of bed, I couldn’t motivate myself and I couldn’t see my own worth at the time. ‘But somehow, I pulled myself out of the pits. Because it’s worth remembering you don’t go through all that for nothing and everything is temporary.

When people challenge me about being disabled it really angers me, because they really never know and never think about it before saying anything. ‘I had an internal disability. I could have a colostomy bag, be an amputee with a false leg, or just be recovering from surgery. I ask myself, why I was trying to justify it, because essentially I have broken lungs, but no one can see them. It’s inside and it’s invisible but because I’m not in a visible wheelchair, people don’t see it as disabled.

She is keen to normalise the way we speak about illness and disability by talking about it openly online. She says: ‘I think we’ve to begin with understanding how people consume things today. No one is going to read a medical journal and usually people only start panicking once they’ve been diagnosed with something. We need to be much more proactive than this. ‘I think we need national awareness campaigns and mandatory tests as part of routine health MOT’s.  
https://metro.co.uk/2019/02/10/you-dont-look-sick-my-lungs-are-broken-but-people-dont-think-i-am-disabled-8451175/?ico=more_text_links?ito=cbshare

THE SHIELDERS TURNING THE WORD 'VULNERABLE' ON ITS HEAD – Edited from bbc.co.uk  
From August 1st  the "elderly and vulnerable" who followed stringent rules were told that they could re-join society and follow the same social distancing precautions as everyone else. But some are concerned they will not be able to shake off the label "vulnerable" and the world they left in March may be less accessible than before, as the BBC's Octavia Woodward explores.

Octavia has Spinal Muscular Atrophy (SMA) - a disability that weakens all her muscles and affects her lungs -  she wasn't thrilled when a potentially fatal respiratory virus began to spread around the globe and even less thrilled when the coronavirus pandemic seemed to divide people into two groups: The general population, and the elderly and "vulnerable".

The V-word was meant to infer protection but instead, for some of the 2.2 million people asked to shield, it felt dehumanising and changed our 21st Century reality. Then, as lockdown began to ease, more questions emerged.

Will the one-way systems in shops use the route with the lift or the stairs? How will those who are deaf, lip read when everyone is wearing masks?

Most of us on the government's Clinically Extremely Vulnerable list haven't spent our entire lives feeling vulnerable, instead we've got on with our lives with different identities, passions and lifestyles. 

For Baroness Campbell, Covid-19 is not the first time she has stood up for disability rights. As a Member of the House of Lords she sits at the heart of government.  She has the same condition as Octavia and many rights that have made Octavia’s life easier - such as being allowed to choose mainstream education - she helped secure.

When asked what she thought of the V word, she didn't mince her words.  "I absolutely hate the word 'vulnerable’ because I'm anything but. We are not vulnerable people. We are in vulnerable situations,"   

In 1995 she was one of about 30 disabled activists to block Westminster Bridge in the fight for the Disability Discrimination Act (DDA) which would make it unlawful to discriminate against a person based on their disability. Ultimately the protest helped pass the DDA in November 1995 which has now become part of the Equality Act 2010.

Jane's continuous energy to fight is something she gratefully attributes to her upbringing.  "I had parents that wouldn't accept that I was going to just sit home, be a disabled person who was looked after. They always pushed me really hard to get out there and to get a life."  It's slightly ironic that in 2020 sitting at home is exactly what disabled people have been told to do even if it's helped protect us.

Jane is acutely aware of the economic uncertainty coronavirus has triggered. "We're going to go into a big economic downturn, and that's not good news for us. So we have to be ready. And we have to be ready to say 'we must have a slice of this cake'. That we're not the Expendables. We're human beings."  
https://www.bbc.co.uk/news/disability-53351241

SCAN’s BLUE BADGE PARKING BAY ABUSE SURVEY  
We are asking shoppers, who are Blue Bade Holders, to think back over the last 12 months to consider their general parking experience and answer some questions about their experiences at supermarkets and on their other journeys where they have needed to access a parking space designated for Blue Badge Holders

Please contact us if you wish to help us with this survey.  Email info@spelthorneaccess.org.uk  or text 07853 038933 to register your interest or visit our website forum where the questions are listed. https://www.spelthorneaccess.org.uk/forum/scan-blue-badge-parking-bay-abuse-survey