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In the comments of my post  on the fate of poor Jonathan, fellow bloggers Lindsay  and  clydethecat had this to say on the subject of caregivers:

This is terrible. Remind me of a news report from the UK about an institution for the intellectually and developmentally disabled where the staff are like gang members. The abuse in these places is horrific. Something really needs to be done to ensure that the “caregivers” they hire really cares, and not just about getting paid.

And:

Yeah, I also think that’s a big issue — not just ableism and the objectification of people with disabilities, but also the position of caregivers in our society. It needs to be not just another low-paid, menial job with minimal entry requirements, although it will also need more than just “You must be this educated to apply”, as educated people are probably just as likely to be abusive.

To the tune of this truth, I found this story today on Disability Caregivers who are overworked, overwhelmed, and under appreciated. This referred specifically to relatives from the looks of it, but we can apply it to facility employees as well.

What disturbs me about this is that it is a common trope to put a halo around the head of relatives and parents who take care of their disabled children, particularly when they are children under the age of 18 (or younger even, I’d say) but little is done to make an effort to make the task of caretaking, for either relatives/parents or those at institutions, less taxing or more secure for both parties. Their work is like that of schoolteachers, simultaneously given lip service as noble and endearing, deserving of our admiration, but swept under the rug and regarded as unimportant when moneytalk starts. This is part of the lethal cocktail which led to Jonathan’s horrible death, and the abuse of numerous others. This is a branch of disablism in and of itself, regarding the care of disabled adults as being ultimately unimportant when it requires more money, time, attention, and training.

This needs to change. I’m hoping that the message of “nothing about us without us” reaches the ears of those controlling the flow of cash, and genuine, quality caring for the disabled, either at home, at an institution, or in the community, is not seen as a luxury, but a human right. Unfortunately, in my experience, able-bodied neurotypical folks, especially those in politics, who don’t have the threat of institutionalization in one of their own facilities, are often clueless as to just how important this is. If able-bodied neurotypical folks get to expect their basic human rights to be respected and their freedoms protected, they should gather the strength to get a clue and defend them for everyone else.

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