People keep shouting that if disabled people can’t cook or clean they should be institutionalized. Apparently accommodating us so we can live independent lives is angering others. Setting aside how awful many care homes are - do you realize there aren’t nearly enough beds?
I get that many ppl seem to want to completely disappear us from society. Seem to think we would be “better off” institutionalized even though many homes are dangerous places for disabled ppl. Even IF they were all sunshine & lollipops …do you think there’s enough of them?
Do you think they accept people of all disabilities? This idea that we should all have families or full time caregivers to support us is nonsense. It’s unrealistic and in many cases unnecessary. Many of us can & do learn to adapt on our own with part time help where available
The reality is we don’t have enough long term care beds to support everyone who’s chronically ill. Many places won’t take you until you’re a certain age. Many deny if you’re too unstable or don’t have rehabilitation goals. I know. I tried to find one & was repeatedly denied.
Stop assuming there’s some society wide program that places disabled people in homes that suit their unique circumstances. Many congregate settings are vectors for disease and neglect. We have to beg for access to places that often make us worse & reduce our quality of life
When you’re tempted to shout that we belong in a home - consider if it’s where YOU would want to be. Also look around - many countries are rapidly expanding their euthanasia programs to include disabled people with non terminal illnesses. Why do you think that is?
We are seeing rising disability numbers due to Covid - and the sad fact is we didn’t have enough supports for disabled people before the pandemic. We certainly can’t support the influx that’s currently occurring. So we are offering DEATH instead. Dead people cost less money.
I know folks are stuck in denial. They don’t want to accept the society wide risk associated with unmitigated COVID spread. But we are begging you to try. Try and think critically about WHY governments are expanding euthanasia programs.
Believe us when we tell you the dire lack of support available. We aren’t shouting about this because we want sympathy or enjoy complaining - we’re shouting because we can see the writing on the wall. We know our systems can’t support this much disability & people will suffer 1/2
If you’re temporarily abled - you have a chance to save yourself from a similar fate. You can wear a mask, filter & ventilate the air, test and isolate and take precautions to avoid repeated COVID infections. You can protect your health at all costs.
I’ve lost track of the number of people who’ve become chronically ill and only THEN come to me for advice. It’s always some variation of “I had no idea it was THIS bad or THIS hard to get help.” They want me to help them be the exception they were so sure they would be.
The problem is - very few people ARE the exception. Unless you’ve got a huge support network who can take time off work to care for you OR incredible wealth…you will have to learn to go without many things. Showers, food, cleaning your home…. Things will get sacrificed.
Even if you are the exception and you have all the support in the world - there’s no replacing your health. It’s not fun to be completely dependent on others for your basic needs - and people can and do grow resentful of having to help you.
There are no do-overs. So stop telling us we are wrong. Wanting to believe something is a certain way doesn’t make it true. I’ve had enough of denial. People are so determined to bring back 2019 that they’re throwing away their health & the health of those around them
If you become disabled - it’ll be too late. If we continue to ignore the risks of Long Covid - our systems will crumble faster & everyone will suffer. Protect the most vulnerable - care about the air we share - and we ALL benefit.
The thing that does not get said enough (meaning, mostly, “ever” or “at all”), is that, yes, there's a lot of error bars involved in the available facts, there are substantial remaining holes in the common knowledge, and some kinds of COVID-induced harm are recoverable.
HOWEVER, in terms of what people experience, COVID will hurt you, the harm will be permanent, and it gets worse every time.
And not only is there not a fix there is no prospect of a fix.
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