Content Notice: References to genocide and Euthanasia

In 2016 much to my surprise and delight I became a Wellcome Trust Engagement Fellow. This Fellowship from an internationally recognised health research foundation allowed me to create new work and start new conversations about the intersections between disability culture, ethics and research. Feeling the support and encouragement of such a major institution at that time gave me a massive boost and helped define and shape much of the work Touretteshero has done since.

One unexpected knock-on effect of the Fellowship was that it allowed us to start working more closely with Wellcome as a whole, both the Trust and the Collection. At the time Wellcome was doing some incredible, radical work with other disabled creatives and thinkers and I felt excited to be part of a growing movement in this country that was beginning to recognise the value of disability culture and bring the experiences of disabled people into the mainstream public consciousness.

We ended up doing a lot of work at Wellcome at their building which is about an hour’s drive from where I live. At this time, my pain and energy levels were changing significantly which meant I needed to rest more during the day to make sure I could do my best work.

The First Pod

So, you can imagine how excited I was to discover that amongst their other brilliant resources, Wellcome had their very own sleep pod! Having access to this pod, thoughtfully located in a quiet part of their busy building, allowed me to book in the time I needed to rest each afternoon. This in turn allowed me and my PA to stay in town rather than travel back and forth twice in one day simply to keep working. It was transformative to say the least and it felt like something all employers should consider getting for their staff and visitors. I was definitely not the only person making use of Wellcome’s pod.

Since then, we’ve had a global pandemic, six new Prime Ministers and eventually a change of Government. In that time, I’ve felt my world shrink, experienced disability hate-crimes, witnessed first had the kind of medical ableism that values non-disabled lives over my own, and more recently had my in-work support grant cut by an astonishing 61%. All of which I’ve been deeply alarmed by, not just for myself but for all of us.

Last Friday, on the day that the Assisted Dying bill passed through Parliament I wrote a post about Labour’s Pincer Movement, raising concerns about how dangerous Keir Starmer’s ideological attack on disabled people is and what the consequences might be if we don’t resist. In that post I made some comparisons between what’s happening to disabled people now, and what happened to us in Germany in the 1930 and 40s.

This isn’t an area I know loads about, and it’s with a heavy heart that I’m having to educate myself further about this particularly traumatic moment in recent human history, but for anyone who thinks I’m being over the top or ‘hysterical’, please let me introduce you to the Sarco Pod.

The Second Pod

According to the BBC, the Sarco Pod inventor Dr Philip Nitschke wants to “de-medicalise the dying process”, by making this literal death trap available to anyone with a 3D printer who wants to end their own life. It might sound like the premise for an episode of Black Mirror but it’s really not. And while the legality of this pod is something that Swiss lawmakers are grappling with now, it might not be long before we’re having to do the same thing in the UK. An amendment to the assisted dying bill that would specifically prohibit the use of this machine here was overturned, meaning that there might be little to stop Dr Nitschke importing his deadly invention in just a few years from now.

Even if you’re in favour of assisted dying now, it could be a very different story if your circumstances change and you find yourself being strongly encouraged by your family members and your doctor to take a one-way trip in a mobile gas chamber like this.

In less than a decade I’ve gone from being excited and empowered by the creation and implementation of a sleep pod, to being terrified about the existence of a death pod. Terrible moments in history are built on thousands of small decisions that gather their own momentum and cause unimaginable harm. And it’s very often those of us on the margins who experience these changes first. Disabled people are scapegoats – we’re easy targets to blame for the shortcomings of weak politicians who’d rather weaponise ignorance and hatred than deal with root causes.

According to the Morning Star it would take an Amazon factory worker two months to earn the same amount that Jeff Bezos earns in one second. So next time you hear someone say that disabled people are ‘spongers’ ask yourself who it is that’s really sponging up all the money. Is it a wheelchair user living in dangerous and unsuitable accommodation in a tower block or is it the man who has already accumulated $224.6 billion US dollars?

These two pods, and everything they represent, offer us two versions of the future. They’re symbols of what’s at stake for disabled people and of how quickly we can be blamed for everything that so clearly doesn’t work about late-stage capitalism.

Which pod do you want to get into?