It is proving an ever more challenging time just coping with awareness of everyday headlines. With growing feelings of unease that perhaps our government is increasing its acts of austerity to gain favour with another on a distant shore. Or to be seen to be aligned. I hope I am wrong.
If you are a regular visitor to my blog, firstly thank you, you will know that myself and my family have faced many challenges due to my having developed MEcfs in my early 40s. It is now nearing twenty one years on. Miraculously we managed to move home last year. With alot of help (one of our young folk being fundamental in helping us do it), and lots of strategies. Due to having ME, I haven’t concluded my writing about that. But will in time. On with the very difficult topic.
Support for People who REALLY need it!
Returning to the current challenges for the disabled and chronically ill. I feel concern, upset and honestly rage for so many people in society who will be impacted by the government’s recent proposals. If anyone has experienced energy or food poverty, they will feel similarly I’m sure. I feel dismayed by the prospect. For the disabled and chronically ill who live alone, the implications are unthinkable.
The proposals for vast changes to the disability support – Personal Independence Payment aka PIP, will only serve to make the disabled and chronically ill feel more marginilised, for starters. The practical implications being far worse as the goal appears to be for more people to lose the daily living component. Which does what it says – helps people with their daily living costs.
Fellow blogger Caz of InvisiblyMe has compiled a post laying out more data. You can read it here.
Also, there is a detailed explainer here from the Benefits and Work Guide, with a link within to download the Green Paper should you wish.
Questions are now being raised about the validity of the requirement for a person applying for PIP to meet the magic number – 4 – in one item on the daily living component, to qualify for any support at all. The current system works with an overall tally of all the scorings on each item. According to Politics UK, this is being investigated by ‘The Equality and Human Right Commission’ as a potential breach of the Equality Act.
If You Need to Talk
Disability and Chronic Illness charities are actively sharing the support number for The Samaritans, for folk who are struggling to cope. Please see the number below. Which is free from any phone.
The Samaritans phone number, which is FREE from any phone, any time day or night is: 116 123
Society’s Perception of the Disabled and Chronically Ill
I am shocked to see the many aggressive comments directed at people online, by those very who possibly have never experienced disability or ill health or the challenges that so very often go hand in hand with them.
Why do so many in society see disability and or chronic illness as some kind of whizzo ticket to an easy life? Whilst simultaneously guilt tripping every person in that category.
Do people know or have they considered:
- How many times that person they are shaming has left their home this year?
- Been able to leave their bed?
- The last time was they were able to visit family?
- Been able to be seen by a doctor?
- Had an eye test?
- Been to the dentist?
- Left four walls?
- Invited friends to visit?
- Read a book?
- Cooked a meal?
- Washed or Showered or if at all?
- Walked their dog?
- Been on holiday?
- …to the theatre?
- …to the cinema?
- …to see sport?
- Visited their chosen place of worship?
- Or gone downstairs??!!
Never probably!
People Perceived as Lazy Shirkers
The opinion that the disabled and chronically ill are just lazy sponging shirkers is awful. And the continued reference of the impact of the disabled and chronically ill on ‘taxpayers’! Forgetting that many unpaid carers are infact working taxpayers and that most people contribute tax in some way. Be that through employment, everyday living or purchases.
We have had one five day holiday in near 21 years of MEcfs. And zero weekends away. I have never seen where my children live or where they studied at degree and masters level. I couldn’t attend their graduations. I can’t visit my family. And see my mother less than once a year.
I wasn’t able to be present in person for my late parents-in-law’s funerals due to MEcfs, I joined online and sobbed alone. These two wonderful people who had helped us through the most dreadful of times.
Equipment and Resources for Daily Living
Many probably haven’t thought about what a disabled or chronically ill person has to invest in to manage everyday life.
Here’s an example of the equipment I have needed to accumulate over the past 20 years of MEcfs.
- Disability equipment:
- Stairlift (which needs to be serviced every year to keep it working smoothly).
- Wheelchair
- Powerchair (I saved up for over five years for this).
- Door ramps x 2
- Wheeled walking frame
- Walking sticks x 3
- Accessibility steps
- Folding bathroom chair
- Shower/Bath seat
- Bed table x 2
- Folding portable table x 2
- Perching stick
- A separate fridge – upstairs
- Water bottles and upstairs pantry.
- Hotcup – upstairs
- Ear plugs
- Neck cushion
- Blankets
- Landline incase my mobile conks out and I need help.
- Other essentials
- Help at home (VITAL)
- Dental appointments (which are very rarely accessed. With the nearest dentist completely inaccessible with stairs only. I have asked the building managers about providing access. Answer, sorry – NO!)
- Eye tests and glasses (again very difficult to access. I suffered a severe relapse and other complications after the last one, and ended up in bed for a year.)
- Supplements
- Personal care items purchased on repeat.
- Dog walker. Yes, I have a companion dog. Recommended by an Occupational Therapist!
- Access to audio books as I struggle to read regularly.
There are probably more I have forgotten.
What about CARERS?
The other major part of this rhetoric that is missing, is the impact the proposals will have on carers. Many who work and care after work. They don’t switch off. If support is withdrawn, that means more pressure on carers and young carers. And they will break. Carers rarely have holidays. Many have to reinvent their careers to cope with the caring role. And often have little emotional support. Whilst giving it themselves. They aren’t acknowledged by the government and are often penalised through no fault of their own. Carers now face the prospect of plugging yet another gap. How? Penalised again.
Whilst my husband helped care for his ageing parents, he also stepped and steps in to help my mother where he can because I can’t, whilst also caring for me. He does all he can to enrich my life.
Young Carers
Young carers already go without too much and lack support for a role they DID NOT CHOOSE!
We as a family experienced food poverty early on in MEcfs life. I recall on one occasion the only snack available for my son was cold rice with cold peas. He ate it with grace, but it broke me. This before foodbanks became widespread. We spent a year with no heating or reliable hot water supply. Our children went without new clothes, necessary tech, pocket money, money for snacks when out with friends, lunch money, school trips, trips out, holidays, shopping trips. The list goes on.
They went on, through sheer dogged determination, to be able to pursue university study with support of teachers, student finance and bursaries. But while also doing paid work while studying. With the ‘gap year’ consisting of working in a local retail chain full-time to save up to go to university! Whilst also supporting at home, wondering how things would go once they relocated. Not much stress, eh?
These the realities so many are completely blinkered to and unaware of. Because they think that living with a disability or chronic illness is some kind of party! It isn’t! Read My Story with MEcfs.
Lobby Parliament and your MP
But all is not lost – yet! I am so thankful to the over ONE HUNDRED charities who are actively lobbying the government on the need for an urgent rethink. As Scope has said, there is still time. But it is of the essence. This includes The ME Association and Action for ME (although AfME were late to the party). And who have put their names to Scope’s letter to the Chancellor.
You can sign the letter here. Please do sign it. You can also invite your MP to Scope’s Parliamentary Event here. Please, if all you can do is these two acts of compassion for the marginilised, please do them.
Closing Thoughts
To say that I am fed up with the slur on the disabled and chronically ill, is an understatement. Having a much maligned condition that consecutive governments won’t invest research into, and struggle to acknowledge the shadows many live in. Many simply exist by a thread, literally. Some who tragically and needlessly die.
The prospect and impact of these measures going ahead just don’t bear thinking about. PLEASE sign the letters!
Thank you.
Have a blessed day⚘
- May – ME Awareness Month
- Thoughts of Family on the 80th Anniversary of VE Day
- Light Changes Everything
- Comparison – the Thief of Joy
- Happy Easter
Hope found in M.E. 
totally agree Pen
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Thank you ❤
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I’m sorry I couldn’t log in on my phone after reading this to reply here so I commented on Insta instead. I wanted to reiterate that I think you’ve done really well to write the article. It’s not easy as the whole benefits thing is so complex, tied up in social expectations and judgements, and it’s pretty emotional if it affects you or people you know. But it’s hard to stay silent too, because what’s happening right now is so unbelievably angering! There are so many places and so many ways they could claw back more than £5bil over several years. But they won’t go those routes because they’re not easy targets, unlike the elderly, the sick, the poor, the disabled. It’s sickening and outrageous, and they get away with it.
I think it’s really good you went through the social perceptions. I’ve a horrible feeling the social understanding and vibe overall will get worse. A bit like anti-English vibes got worse with all the increased illegal immigration. And mass media aren’t helping the plight of the chronically ill and/or disabled because they don’t sell stories unless they’re fanning the flames and getting people worked up. It’s a worrying situation and we can only hope some sanity and compassion will win the day before it’s too late.
Caz xx
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Thank you so much, Caz. I hadn’t wanted to post about this issue, but just had to. The demonising and blame toward the disabled and chronically ill has to stop. Often as you rightly say fuelled by the media. I hope the 100+ disability charities lobbying the government make headway. And the government searches its conscience. Xxx
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Excellent post 💯
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Thank you!
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