Freedom is for the rich
I’m sure a lot of people have talked about this tweet by Paul Ryan from last week:
And I’m just so angry about it. I’ve tried to calm myself down. To comfort myself that there are lots of people saying how fucked up this is. But fundamentally, this is so violent. I can’t say nothing.
Because there is so much of this shit all over the place. It’s everywhere. The other day I saw a tweet about how good health savings accounts are, because you get to pay for healthcare with your own money!
And honestly, this is at its heart a problem of language. Because people in power keep using the word ‘freedom’, and making me feel like Inigo Montoya when he told Vizzini, “You keep using that word. I do not think it means what you think it means.”
Because for me, paying for my healthcare with personal savings would not make me free. Obviously I have paid for healthcare because I live in the UK, and while I worked, I paid my National Insurance contributions like everyone else. I am hoping that in the future I will be able to work again, and pay more into the system.
However, my ability to work ever again depends in large part on the NHS, social care, benefit payments, NICE, clinical trials, medical research. In other words, government spending on ill people. My freedom comes from, and is dependant on, these things. Both now and in the future.
I take eight prescription medications on a daily basis, two more on an as needed basis, two suppliments, and a non-psychogenic cannabis extract, CBD. The combination of these things enable me to be awake enough of the day to maintain friendships and support networks through social media. To be out of bed up to four hours at a time. To be able to wash most of myself most of the time in our modified bathroom.
But without the NHS, without my disability benefits, I wouldn’t be able to afford these things. The kind of freedom encouraged by Paul Ryan, the definition of freedom that lurks behind talk of healthcare ‘choice’ in the UK, would leave me locked in my house, in my room, in my bed, in a body on fire with pain from faulty nerves, in a mind without the energy to combat the disassociation and derealisation that often develop and accompany severe chronic pain.
Choice looks very different for someone in a healthy body, a car, and enough money to afford more than one option.
For me, all this talk of choice in services upon which my life depends is just terrifying. Because, yes, technically all the services may be available. Technically, it is possible to get X therapy or Y medication. If you can afford it. What if you can’t?
There is currently a large, double blind study going on in Norway on a medication which may be able to cure my primary diagnosis of CFS/ME/SEID. Just cure it. Done! If it works, I could take it and be healthy again! I’m only 33, so it’s not inconceivable that I could be working again before I hit 40. Given that retirement ages are heading toward 70, that would be another 30 years of working, paying into the insurance system I’m currently using.
But what if that insurance system no longer exists?
If the national insurance system in the UK is abolished, then should this treatment become available, do I just get it, or am I ‘free’ to pay for it if I can? How do I pay for it if my national insurance stops paying out disability benefits?
For me, and for very many other people, a financial choice is not a choice. As a household, we celebrated the day that we were finally able to choose a clean electricity supplier. Being able to choose anything but the cheapest option is, for many people, not an option.
That treatment I mentioned above? It’s chemo. They discovered it’s effect on SEID by accident when treating cancer patients who also had SEID. It works by wiping out the immune system so you have to start from scratch. It’s a serious, intensive treatment. For cancer and arthritis, which are two of the current uses of this medication, it can make you feel worse for up to 4 months after treatment. And even if it works, SEID often results in something called deconditioning. It has for me. Reversing deconditioning requires extensive sustained physical therapy. For me, going through this treatment and the recovery could take over a year, but result in being able to do a full day’s normal activity for over 30 earning, tax paying years.
But, if healthcare in the UK changes from a single payer system, there’s a high possibility of me being screwed. My SEID is a pre-existing condition, and if this turns out to be the treatment, it won’t be cheap. There is a high possibility that if healthcare in the UK becomes a marketplace, I will not be able to afford the insurance necessary to become healthy. And there’s no way that, for me, that is freedom.