@Naomi10 thank you for this
beautiful thoughtful piece.
For me I will share this with those who may not hear it from me.
I have tried with very limited success to convey that when you sicken further as a person with an ME diagnosis already, you are on your own. There is nothing.
If you are already severely enough affected by a chronic illness or other impairment, not to be a part of the workforce, then there is little incentive to invest time and material resources in your health and welfare. All of us in this bracket experience this in word and deed from those we require assistance from. But from the beginning of the pandemic this political position was made explicit. Put into writing and directives not to care for those who become seriously ill with COVID-19, people who were as disabled people already registered as in need of a few hours of care per week.
Eugenics had gradually receded from public view in the previous decades but lo and behold. Out it sprang fully formed as bold and brash as it ever was. With such head turning rapidity it rose up from its accustomed zone of occupancy. Spread across the surface of everything. No longer pulsing and pulling just below the surface. A magnetic pull upon every aspect of “healthcare” and everything else, it now announces itself, here as it always was, but now they acknowledge its presence with gratitude. A powerful ideal a foundational ideal an ideology to rely upon once again. In our modern digital health systems it had hung on in RAM, no reach for something filed away.
A murderous horror not new not news to disabled people. It hurt nonetheless for its old age. A brutal blow. A rupture. To experience our disposability, so cheerfully espoused and expounded by our most well known and powerful public figures. On news broadcasts clearly not meant for us. To have such ideas, ideal’s, the foundational ideology used as something solid and reliable. Something to hold onto in this time of fear and uncertainty. Self-reassurance by the as yet non-disabled people or don’t yet require care-‘high functioning’-disabled people, an assurance that they are not in the firing line, because we are. That’s of course an obvious and self-serving falsehood, proposed by those in a position to know well the contradictory facts of the matter
.
‘Healthy people’ have underlying conditions too, disabled people are workers too. Workers have disabilities too. Non-disabled and workers die from deadly viruses. Because of the virus and other people’s exploitation of their bodies. They exist on the front lines and they are damaged and disabled and killed by the people who put them there. Placed by careless employers in the danger zone of our deadly virus ridden world, offered none of the life saving protections at their employers disposal. Government leaving the choice to employers discretion. Profits are paramount, life saving measures are almost nowhere.
I wish sometimes that I could not know this terrible truth. The expendability of all of society’s living beings for someone somewheres numbers sheet and assurance of safety and luxury.
But at this time a little knowledge is the only protection we have. We will of course see things differently to people so far surviving and thriving.
Even with most of us in precarious circumstances, some of us are closer to the edge than others. As you so beautifully express in this extract:
Despite having had profound health problems since childhood, I am not under the care of a consultant and receive no medical support whatsoever for my condition. Were I to suffer a serious relapse, this wouldn’t change: there would be nothing available to me by way of treatment, symptomatic relief, or even basic support and guidance. Were I to require hospital treatment, I know that I would almost certainly be discharged in a far worse state than I went in, so damaging is the hospital environment to me. For this reason alone, I will always err on the side of caution with regard to my health.
Because she’s worth it.
