Coronavirus | Thoughts from a Disabled Pixie

Needless to say, we are in the midst of uncertain and unprecedented times.

Photo of a card reading, 'keep hanging on in there' (left) and a medical face mask (right). — Photo of a card reading, ‘keep hanging on in there’ (left) and a medical face mask (right).

Everywhere we look, we are bombarded with the latest news regarding Covid-19; on the TV, radio, newspapers and the Internet.

While most is factual information from reliable sources, there is also plenty of unhelpful rumour and speculation, particularly on social media.

Personally, I don’t find it beneficial to watch the News three times a day, unlike my folks!

We all know by now what we should and shouldn’t be doing to limit the spread and keep ourselves and each other safe.

Guidelines on social distancing during the Coronavirus pandemic.

Why add to the stress and anxiety? I’d rather focus on other things; happier things!

Of course, the situation affects everyone in some way; domestically, financially, their work, education, physical and mental health.

This is an incredibly frightening time for many, myself included. I am considered high-risk, since I have a progressive muscle-wasting condition that affects my breathing.

A Friendly Reminder from a Delicate Little Pixie

Though we all must now adapt and change our way of life somewhat, it’s important to remember this is only temporary. Things will improve.

I’ve heard people complain about the restrictions; mostly young, fit, able-bodied people. Yes, it’s a pain in the fat ass! But it isn’t forever.

Funny meme about the Coronavirus featuring the character Jay from The Inbetweeners.

Also, please be aware that many disabled and chronically ill people are repeatedly forced into prolonged periods of self-isolation throughout their lives. Plans are often cancelled last minute due to poor health. This isn’t new to them.

So, before you complain because you can’t go out partying with your mates, or to the pub, please consider those for whom limitation and isolation is a way of life.

Final Thoughts

Show your thanks and appreciation for the NHS and those working in health and social care.

Illustration of NHS healthcare workers being saluted by Superman.

Be mindful of the most vulnerable in society, and help out if you’re able to.

Print-out for those wanting to help anyone self-isolating due to Covid-19.

Please don’t panic buy or stock pile. This isn’t the apocalypse, people!

Where possible, please support local businesses.

Be sensible, be safe, be rational.

This too shall pass…

Interview | Scott Watkin: SeeAbility

36-year-old Scott Watkin, an eye care and vision development officer with the charity SeeAbility, is one of this years deserving recipients of the British Empire Medal.

Scott, who has learning disabilities and the eye condition keratoconus, is recognised for his tireless work in the learning disability community.

A dedicated ambassador, Scott began his career co-chairing the learning disability partnership board on the Isle of Wight. This led onto an influential role as co-national director for learning disabilities within the Department of Health. He also lectures at the University of Hertfordshire, focusing on eye care, vision and equal rights. However, he notes his work with SeeAbility as a major milestone.

1. Scott, could you please tell Disability Horizons readers a little about yourself and your disability?

I was born with Williams syndrome which is a learning disability. Apparently I am one in ten thousand! Some of my muscles can be quite weak and my coordination can be not great at times.

I went to a special school and teachers never really paid attention to me, and it meant I didn’t really get the grades I wanted to get. I was bullied too which made learning very hard.

It also means I am more likely to have vision problems and actually I was diagnosed with keratoconus which I’ve had two corneal graftoperations on. I have quite a difficult daily routine involving eye drops and contact lenses.

2. How does your learning disability and eye condition affect you, and how have you found working with a disability?

My learning disability only shows when I’m nervous or worried about something, otherwise I’m a very confident person. I just need a bit of support to do my job and I’ve been really lucky to be supported well at SeeAbility.

My vision varies, some days it’s ok some days really poor. But I’m always ready to work!

3. What adjustments have you and/or your employer had to make in order for you to do your job effectively?

If I don’t know a journey, my manager will meet me in London and we will continue the journey together. I know my way from the IOW to London very well having made the trip many times.

If my vision is really poor, we put all my information on yellow paper in Arial 16pt font. This helps me to read it better.

When I first started working, I had lots of support to make steps in my job. But for me it’s just being able to talk to someone when I need to, and that’s the case at SeeAbility. If I don’t need that then I just get on with my job and carry on!

4. How and why did you get involved with the charity SeeAbility?

I first met Paula Spinks-Chamberlain (Director of External Affairs) at the Department of Health. SeeAbility supported me through my keratoconus and then I did some work as an ambassador. After that I was offered a job!

5. Could you please explain the role you play within SeeAbility?

I’m an eye care and vision development officer and I make sure people with learning disabilities get good eye care. I travel around the country giving training sessions to people with learning disabilities and carers. I need to make sure we lobby government to make sure they understand that eye care for people with learning disabilities is really important.

People with learning disabilities are much more likely to have sight problems than other people. Not only that, but they are the least likely to get the eye care they need. We are working so that eye care professionals make reasonable adjustments but what we really need is a national eye care pathway so that everyone with a disability can access a sight test.

6. You are also on the board of Learning Disability England. What are your aims and objectives in this capacity?

I try and make sure people with a learning disability have a voice. People with learning disabilities need the same access to services as everybody else.

It’s about setting the direction of learning disabilities in England. Lobbying government and challenging the social care cuts. I need to make sure we do what we say we are going to do.

7. Why is it so important to you to campaign for people with learning disabilities?

Firstly, people with learning disabilities are much more likely to have sight problems than other people. Not only that, but they are the least likely to get the eye care they need. We are working so that eye care professionals make reasonable adjustments but what we really need is a national eye care pathway so that everyone with a disability can access a sight test.

Secondly, people with learning disabilities deserve to have their voice heard. We deserve the same opportunities as everyone else as we have so much to offer. We just need the chances to shine.

8. What do you think are the main issues that require attention and improvement?

We need to stop the social care cuts and get a good eye care pathway down for people with learning disabilities so they can get the right eye care!

We need good annual health checks.

And to make sure the government take people with learning disabilities seriously and listen to what they want. For example, most people with learning disabilities want to work, and we just need employers to give us chance so we can achieve what others can have a good life.

9. Congratulations on being awarded a British Empire Medal in the New Year 2018 Honours list. How does it make you feel to be recognised for your achievements?

I never thought I’d be recognised in this way, it’s a real big honour. I’m glad my work is being recognised nationally because it’s really important. It sends a message to all the eye care professionals that I work with, they need to know how important eye care for people with disabilities is.

10. Finally, what tips would you offer anyone like yourself with a similar disability, who is seeking employment?

Don’t stop trying to find employment. Don’t be afraid to say you have a learning disability and it’s ok to ask for reasonable adjustments. You will have so many positives to bring to any role and don’t forget that, you are actually very reliable, more than other people!

I’d like to thank Scott Watkin for taking the time to speak with me.

My interview with Scott was originally published by Disability Horizons

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The Winter Edit: Part 2

5 Tips to Stay Well through Winter

The dark nights are drawing in and the weather is turning increasingly colder. The harshness of winter fills many disabled people, myself included, with dread.

How can we best prepare ourselves for winter?

We are 80% more likely to catch a cold during winter.

Bearing that in mind, here are my top tips to stay well and defend yourself against those nasty winter viruses.

Click here for Part 1 ~ Top Tips to Keep Warm through Winter!

1. Stock up on supplies:
Medication –

• It’s always advisable to keep a stock of essential supplies in your home. Several factors, including adverse weather, can prevent you from getting hold of medicines at short notice.
• All my medications are on repeat prescription so that I don’t have the bother of getting hold of a GP every time I need something.
• As someone with Ullrich congenital muscular dystrophy, a common cold for me can develop scarily quickly, and so I ensure there’s always a reserve of antibiotics at home, should I need them.
• It’s important to go and get your Flu jab annually and, where relevant, the pneumonia vaccination. Don’t leave it too late to protect yourself from influenza – it takes two weeks from the time you’re injected for your body to build up an immunity.

Contacts –

• It’s good practice to have a list of contacts, in case of an emergency. Include medical professionals (e.g. doctors, consultants, physiotherapists and hospital ward/department direct lines) so that you or your next of kin can contact, should you become ill. Keep your list somewhere easy to find, such as on the fridge, and make copies!

2. Nutrition:

• I choose to take supplements including a daily multivitamin and probiotics, in order to boost my immunity. Supplements come in various forms: tablet, capsule, liquid and powder. If you struggle to swallow pills, there’s always another option out there for you.
• I’m not a fan of water, so I drink a lot of herbal teas, such as lemon and ginger, to keep me hydrated and flush out toxins. Both ingredients are naturally antibacterial while ginger also helps ease migraines, inflammation and nausea (the latter being a common side effect of antibiotics). Add some honey for sweetness and to soothe a sore throat.

• I find smoothies and soups are an easy way to get your recommended allowance of vitamins and minerals. It’s really important to eat healthily to aid your bodies defence against all those coughs and colds circulating throughout the winter months. Remember: you are what you eat!

• Top Foods: lemon, ginger, garlic, onion, kale, cinnamon, turmeric, honey, apple cider vinegar, grapes, natural yoghurt and chicken soup.

3. Cleanliness:

• I keep a little bottle of antibacterial hand gel in my bag (you can buy them really cheaply from most shops nowadays). I use it when out and about or using public transport. It’s a simple way to prevent the spread of germs from surfaces and person to person.
• It’s stating the obvious but wash hands with soapy water and maintain clean surfaces within the home. It’s often difficult to prevent all members of a household becoming ill when one gets sick. But simple precautions such as this could make all the difference.
• Grab yourself a few packets of antibacterial wipes and remember to clean phones, remote controls, computer keyboards and door handles regularly. You’d be amazed how much bacteria harbours there.
• Be considerate and try to cough and sneeze into a tissue rather than the air. It’s a good idea to keep plenty of tissues in stock. Please don’t do what my Dad does and carry a snotty cotton handkerchief around with you all day – bleurgh!
• Replace your toothbrush after you have fully recovered from an illness.

4. Physiotherapy:

• It’s beneficial to stay as active as physically possible, particularly throughout winter as immobility makes us more vulnerable to infection.
• I am completely non-ambulant and so this is a major issue for me. Immobility results in muscle decline and poor circulation, which in itself leads to further complications.
• Although I cannot exercise in a conventional fashion, I basically wriggle and move about as much as I can. For example, I flex my feet & wiggle my toes, lean back and forth and side to side in my chair. Don’t be afraid to put some music on, loosen up and just MOVE however you can, for as long as you can.
• If you are able, go swimming as this is the best exercise for those with physical disabilities.
• Remember to pay attention to your lungs! Deep breathing exercises are an essential daily requirement for me. Following the Active Cycle of Breathing Techniques (ACBT) helps to keep me as strong as I can be.

5. Avoid Germs:

• I am particularly susceptible to respiratory viruses. If I go anywhere near someone with a cold, 9/10 I will catch it. For me, a common cold can quickly progress into a much more serious condition, I do my best to limit exposure to infected people.
• I avoid overcrowded spaces and public transport when I’m feeling run-down, whilst taking and shortly after a course of antibiotics as this is when my defences are the lowest.
• At times when coughs/colds are prevalent within the local community, I try to stay away from enclosed public places e.g. trains, buses, cinema, supermarket/stores, pubs, clubs etc.
• If you must go out, remain in the fresh, open air (but wrap up warm).
• Wear a scarf when out and about. When necessary, I can use it almost like a mask, pulling it up over my face. This prevents me from inhaling and contracting airborne viruses.
• Why not add a few drops of Olbas Oil (eucalyptus) to your scarf. That way, when you do need to pull it up over your nose and mouth, you can breathe in the fresh scent and it won’t feel stuffy.

I really hope this was helpful! Please SHARE this blog post so that others may benefit.

Tag: Department of Health