When I talk about the subject of caregiving and the hiring and firing and shifting of personal care assistants, I'm sometimes shocked at the things some able bodied folks suggest that disabled folks compromise about.
It reminds me of this quote from Lincoln:
“Whenever I hear anyone arguing for slavery, I feel a strong impulse to see it tried on him personally.”
There's a great deal of misunderstanding on this topic. When we speak of personal care assistants, the words "self-directing" and "empowering" vis a vis the disabled person are and should be tagged along beside them. Far too often, other words, sometimes ugly words that label the person getting help are attached.
Sometimes we are considered spoiled if we expect aides to show up at an appointed time. Or dubbed lazy if we insist they follow our care plan set out by medical professionals. This has no place in the system of personal care.
Compromising in key areas results in a lack of quality in the disabled person's life. It's a trap easy to fall into, especially if you're a people pleaser....not wanting to be seen as too demanding, not wanting to come across "the wrong way", not wanting to feel rejected by those who refuse to follow simple job rules or expectations and threaten to leave or strike.
Don't get me wrong. Negotiation is necessary on everyone's part, as is consideration for everyone's well being. But negotiation should never be one sided, with the disabled person being thrust out of an employer role and treated as if the system is a charity model and told that it has to be the aide's way or the highway.
And here's something that might shock those who are just venturing into the role of hiring personal care assistants - I've learned over the past few decades that amicable partings can be a good and healthy thing when folks can't agree what the job should be, even and especially when hiring friends or acquaintances. I've also learned that when employees expect special treatment or entitlements, as an employer this makes it difficult or impossible for me to get done what needs to be done with the resources I have.
It's not personal when aides have to come and go, no matter whether they leave by their choice or mine. It's about care.