Dependent on a Government that doesn’t Care*
Author: Bethany Bale
(Trigger Warning/Content Warning: Death, Vulnerability, Dependency, Coronavirus, Discrimination. If you are someone living with a disability/chronic illness, then I'm sure you are more than aware of of all the following issues. Please don't forget your worth during this time. This post is for those who don't live with this reality every day, and need to be reminded that it's not an exceptional circumstance.)
It’s a very scary time at the moment, nobody can deny that. But do you know what’s even scarier? Being a disabled person during this time.
It’s been scary for the last 10 years, as time and time again the government has made it clear that they’re not interested in protecting those most vulnerable [1]. The homeless [2,3], the elderly [4,5], NHS staff [6,7], refugees and immigrants [8,9], and – of course – the disabled [10].
Ever since the financial crisis, and the subsequent election in 2010, the UK public has been led to believe that – not only are the disabled unworthy – but they’re the problem. The ‘lazy benefit scroungers’ are emblazoned across your televisions on shows like Benefits Street, or scrawled across your newspapers alongside misleading headlines: they are the problem, and they are too expensive. Although benefit fraud exists, just as it does on the opposite end of the spectrum [11,12], this idea that it’s not a minority of people – but instead any individual in receipt of benefits, is a huge misrepresentation. We have been fed this lie for a decade now and it’s left us with a society that are unaware of the damage austerity has done. That damage being over 130,000 preventable deaths [1], that we know of.
It was scary to live with a disability before Coronavirus. To know that your life relied upon access to certain medications and a functioning NHS. To know that you depended on a Government that didn’t care whether you lived or died.
Now it’s just terrifying.
At least up until now a lot of us (although not all) could leave the house and distract ourselves from all of this negativity. We were able to live with more independence than we currently do, and that made us feel less vulnerable - less reliant on our policy makers. But the current pandemic – unsurprisingly – has highlighted to us all, just how vulnerable we actually are.
It’s 2020, and the UK has been a welfare state for over 80 years now. The NHS is a much-loved institution, and we live in a liberal democracy. No matter what you hear in the news, or whatever fears you live with, you always know on some level that you’ll be safe. That the government – whatever party – will keep you safe.
Well in 2019 the UN found that the UK Government were in violation of its human rights obligations, with those living with disabilities shouldering the majority of that burden [10]. A UN report stated that persons with disabilities were some of the hardest hit by austerity measures, with nearly half of those in poverty (6.9 million people) coming from families where someone has a disability [13]. The report also stated that ‘Persons with disabilities are more likely to be in poverty and are more likely to be unemployed, in insecure employment or economically inactive.’ [13]
The year before this, the Equality and Human Rights Commission found that half of disabled people in the UK feel excluded from society, and one in five Britons with disabilities have their rights violated as a result of austerity. [14]
This reality moved much closer to home for me recently, when I – like many other people in the UK – were impacted by the national shortage of Hormone Replacement Therapy (HRT) patches. I suffer with a rare endocrine condition which means that I don’t naturally produce lots of my hormones, including oestrogen. Although oestrogen is known for lots of different things, it’s also very important for bone strength and general health. Without it, not only would you not have a period, but you can become very unwell. I was on 100mg of oestrogen every day (and have been since around the age of 12), and suddenly – just like the NHS’s supply of HRT patches – it jumped down to zero.
Although my chemist made me aware of the shortage before Christmas, and I was in conversation with my endocrine consultant throughout January, come February there was still no replacement available – and I went one month without the medication. This not only meant that I had a heavy period for three weeks (which, people who have periods will understand, is not fun) but a few weeks in I began to suffer with several debilitating symptoms – including migraines and light-headedness. I was signed off work for two weeks as, even though I had become unwell, my doctors were still trying to find a replacement medication. I’m very privileged to have had access to sick pay, an understanding workplace, a helpful GP, and parents that could care for me if I became very unwell – but there will have been many people who were affected worse than me, who did not have access to these luxuries.
Luckily for me, HRT patches are not the most important medication that I take, and I’m fine now. But there are daily medications that I take, and emergency medication that I need constant access to, which without – I would die. I’ve always been incredibly grateful for the NHS, but this recent experience really highlighted to me how much my life is held in the hands of a government that doesn’t care.
Its track record on changing social care policies [15,16,17] and blatant discriminatory practices [18] – while continuing to find money for those less vulnerable in society [19] – have made it clear for a long time that the disabled, like many other minority groups, are not their priority. My life would be but one more number to add to an ever-growing statistic. A statistic that will soon be forgotten.
This might be hard to digest, but it shouldn’t be surprising. We’ve seen this before. We saw this with Grenfell [20], we saw this with the treatment of the Windrush Generation [9], we’ve seen it countless times before. But we forget.
Please don’t forget.
For those living with disabilities and/or chronic illnesses, if you’ve read all of this, then I hope that it’s not caused you too much additional anxiety. Please look after yourself during this time, keep talking to friends and family, and seek help if you need to. Stop pressuring yourself to be productive. Surviving each day, however you see fit, is a huge achievement. Well done.
For those who don’t live with this fear, alongside countless other symptoms, every day – use your privilege. Take the time learn more about the impact that austerity has on disabled individuals (I highly recommend Frances Ryan’s book: Crippled). Keep talking about this violation of human rights, and call out discrimination when you see it.
Clapping for the NHS is great, but remember that it doesn’t fund it. Donating £5 to fund a national service that should already be fully funded by the government is hugely appreciated – but remember, when all of this is over, that it shouldn’t have been necessary. Donating £5 on a platform that have previously threatened to sue the NHS [21], and play a huge part in the privatisation of the health service [22], should not be necessary. Keep talking about this long after you can go back to the pub.
Take the time to understand and appreciate how disabled people are often housebound, and have to cancel holidays or events – and they’re just as frustrated as you have been. But it’s for life, not just for summer.
Also, keep talking about invisible illnesses and continue to challenge the misconceptions that surround them, as lots of individuals with invisible illnesses/disabilities will currently be struggling to receive support – as the current assessments in place for certain benefits makes it harder for those with invisible illnesses to qualify. [23,24]
Look out for your Disabled friends (and any other vulnerable groups/key workers) as much as you can during this time – and remember all of the support that the Government didn’t provide them with – and make them accountable for it later.
Most importantly, please don’t forget about those statistics. Don’t forget about this issue. Don’t forget about those lives. People’s parents, grandparents, siblings, and friends: the lives already lost, and the lives we’re currently losing.
My life, like many others, might depend on a Government that doesn’t care – but you can. So do.
*Disclaimer - BVisible is a non-partisan organisation. We won’t tell you who to vote for, but living with a disability is an incredibly political thing (whether it should be or not) and it’s important to highlight these political issues. No matter who’s in charge at the time.
Bibliography
5. https://www.ageuk.org.uk/globalassets/age-uk/documents/reports-and-publications/reports-and-briefings/health--wellbeing/age_uk_briefing_state_of_health_and_care_of_older_people_july2019.pdf 6. https://www.bbc.co.uk/news/uk-wales-52256385
7. https://www.bbc.co.uk/news/uk-wales-52272369
8. https://www.bbc.co.uk/news/uk-politics-51961933
11. https://www.theguardian.com/technology/2019/jan/03/google-tax-haven-bermuda-netherlands
12. https://www.bbc.co.uk/news/business-50011441
13. https://undocs.org/A/HRC/41/39/Add.1 (p.16)
15. https://www.bbc.co.uk/news/uk-41487126
17. https://www.bbc.co.uk/news/uk-wales-50378036
20. https://www.grenfelltowerinquiry.org.uk/phase-1-report
21. https://www.telegraph.co.uk/news/2017/11/28/nhs-pays-virgin-threatens-sue-losing-contract/
24. https://onlinelibrary.wiley.com/doi/epdf/10.1111/1468-2230.12096 (p.927)