Props to Naga Munchetty, the BBC news presenter, who has gone public with her experience of dealing with a chronic womb condition which causes excruciating pain. 28 million people in the UK are estimated to be living with chronic pain. It’s debilitating. Far too often, people are encouraged to mask their pain and health conditions, for fear that employers and colleagues will think less of them, and more importantly, less of their capabilities, if they fess up.
28 million is double the amount of people who identify as being Disabled in this country. It’s over 40% of the population. Can you even imagine if every single one of us living with chronic pain, which is a disability, stood up for our human rights, and also claimed the benefits we are entitled to to help us live our lives with a little more ease?
Can you imagine how the Government might respond to that many ‘burdens’ upon society, without the penny still ever dropping that we ARE society?
Government is hellbent on getting Disabled people to work beyond pain, and beyond our capacity at the moment, to boost the economy. 2.55 million people are not working due to being long-term sick according to the latest ONS figures, with mental health distress, back and neck pain and post-viral fatigue highlighted as key causes.
The blame gets put at the feet of the pandemic, at the same time as Government appears to be trying desperately to make us forget the pandemic ever happened. But it did. And there were knock-ons. And there are still knock-ons. But the biggest problem isn’t the fact that we had a pandemic and people are still dealing with the health implications arising from that on a massive scale.
The biggest problem is that once again Government has failed and continues to fail to provide decent amounts of care-based and social support, and to make reasonable adjustments to allow Disabled people to thrive, even as the number of us failing to thrive is shooting up. There is a push to shrink budgets and relieve economic stressors and stressors especially on the benefits budget, while human stressors reach untenable heights. Economies are there to serve people. People cannot – absolutely cannot – serve economies if they are unwell. When this attitude of hostility towards us, an attitude of ignorance and ignoring is in place, people burn out – something we are seeing across all echelons of society right now, even the younger demographics which used to be fighting fit and go-getting. At the sharpest end of burn out and mental health distress, Disabled people die. I’m not going to stop saying this.
Most people keep their disabilities and health conditions under wraps for years. Even conditions which, like Naga’s, cause people to scream in pain for the best part of an hour at a time, and to need taking to hospital. What does it say about us that we think that’s a norm? It’s one thing to choose to be private about health conditions, but it’s another that we feel forced to be private for fear of repercussions if we out ourselves.
We still live with this idea in our heads that disability is something very visible and obvious, often involving a wheelchair. A wheelchair is the universal sign of disability – think accessible loos and seating – which reinforces the perception. Eighty per cent of disabilities are invisible. And people keep them that way, invisible, because of fear that they will be treated differently, or abused – witness Sophie Morgan's disgusting treatment this week when she endured sexual harassment in the form of a sick meme. Or Kat Watkins, forced to endure a night of pain in inaccessible accommodation.
These abuses of Disabled people, all Disabled people, are social norms. And they need to end.
We need a kindness revolution. Instead of just printing it on wall vinyls and t-shirts, we need, as a society, to be love in action. To understand that disability is a normal part of life. That all we need is to be heard, and have adaptations made so we can participate in work and life. And that those adaptations benefit all of us in the end – if we don’t need those changes ourselves right now, we will in time, without a doubt. And if a shift of mind is needed within society, that goes quadruple for Government and how it implements the myriad policies which actively disable us.
If you like it then you should have put a house round it
Shocking news reported in The Guardian this week about Disabled families being housed in a Travelodge due to a lack of accessible accommodation, and then being turfed out of their rooms to accommodate people going to a Beyonce concert.
When whole families are being housed in single rooms it’s bad enough, but when the council then doesn’t secure those rooms for the duration of the time they need to be provided for it creates huge mental health distress, and in the case of Collette Collington’s two autistic sons, further impairment. Autistic children need strict routines and security. Too often, the needs of neurodiverse people are overlooked and they are made to put up with situations which cause active impairment. A wheelchair user, Piotr Rembikowski, has also been stuck in the Travelodge since last summer – way beyond the six week legal threshold the Council must adhere to. It is astonishing, and downright wrong, that the number of people made to live in such situations, and that such accommodation is now, in many local authorities, considered to be the norm.
Blooming marvellous!
Congratulations to the Horatio's Garden charity which has won the top award at the Chelsea Flower Show for its accessible garden. The garden is designed to be accessible for wheelchair users and people with spinal injuries, and the planting has been designed to be the antithesis of medical institutions.
The garden will be relocated to Sheffield after the show.
When we think of the great outdoors, we seem to think it will naturally be accessible. But too often gardens and wild spaces are not thought through properly to ensure that everybody can enjoy them. Hopefully the example this sets will inspire others to think about making these spaces, so important for well-being, accessible to everyone.
Climbing mountains
Great news from Hari Budha Magar, who has summited Everest, and is now back down again. Hari, a double amputee, intends to climb three mountains to raise funds for charities which have supported him since he lost his legs, and fought hard as a campaigner for Disabled and blind people to be allowed to climb Everest – something which was banned in 2017 for alleged health and safety reasons.
It is risky. People do die on the mountain every year (ten this year so far) – the death of another Disabled man, Jason Kennison, was reported just one day after Hari’s success. But that doesn’t mean that Disabled people don’t deserve the same opportunities as non-disabled people. It doesn’t mean we should be denied the right to assess risk for ourselves and do the things we love, to push boundaries, and give it a go. My heart goes out to Jason’s family, not because he was Disabled, but simply because they have lost a loved one. And my heart rejoices with Hari, because he bloody well went and did it. I’m looking forward to seeing his prosthetic legs in the corner of my local gym changing room again really soon.
