Monday, February 02, 2009

Rights of Nasty People

Minna Mettinen-Kekalainen, a woman with Asperger Syndrome and amyotrophic lateral sclerosis, has finally been given the care she needs, after much protest. She is severely disabled and was cut off from home assistance, only managing to stay alive because her friends were willing to feed her (she needs tube-feeding).
In protest, she started a hunger strike, which she called off in order to stay alive (possibly she figured out that her starving to death wouldn't bother someone willing to deny her such basic care as tube-feeding and diaper changes).
So this one has a happy ending, at least for Minna (I'm not sure if there are others similarly cut off by this agency).
But some of the comments on her case concern me.

"I ... do fear that this will give her the idea that it is ok to treat others with disrespect. I don't fall for the aspergers BS, I think giving someone a label allows them continue with their behaviour - never seeking any sort of self improvement because it's 'just the way they are'. And right now she's got everyone wrapped around her finger."

"Trained or not to handle it, if she doesn't have the control to treat people with the dignity she expects for herself then they shouldn't have to enter her residence."

"Try being the health care worker who can't please.... Place her in a long-term facility and she will get what she needs."

Asperger Syndrome is not characterized by being mean and nasty to people, but by being literal and socially awkward. People who understand that the AS person is not intending to be rude are not going to find them very offensive - unless they're nasty as well as autistic, since after all normal people don't have a monopoly on that. And knowing how service providers often screw people over, I doubt Minna did anything wrong. According to her, she threatened to report the nurses because they weren't following her doctor's orders - something that could have been seriously harmful or even life-threatening, depending on the orders they weren't following. And given that you don't need to be very competent to get hired as a care provider, and the low pay means many care providers don't view the job as important, it certainly makes sense that they'd screw up or be lazy.
But let's say that Minna really is a nasty, unpleasant person, who was verbally abusive to her care providers. Remember that she is also a severely disabled woman, almost completely paralyzed, which means there's no way she could physically harm someone. Would her being nasty and verbally abusive mean that she deserves to die from medical neglect?
I don't think so. It's expected, if you work as a service provider, that you will be able to deal with verbal abuse. My mother, who works as a cashier, has dealt with nasty people and knows that her job requires her to stay polite and make a reasonable attempt to please them. She'll rant about them to her coworkers and family, that's just fine, but she has to deal with them. If she was not able to do this, she wouldn't have lasted long in her job.
I understand that some people can't deal with verbal abuse. I can't. And if I was applying for a job working with people, I'd have to learn to deal with that. Of course, few people would actually enjoy helping an abusive disabled person, but few would actually be unable to cope. Those who are literally unable to cope should either find another job or - if they are good workers in other circumstances - simply be assigned to work with those clients who they can deal with (just like someone who can't handle seeing naked adult men could work with a child, a woman or someone who can dress themselves and handle their own toileting). It might be possible to assign more workers on shorter shifts with that person, so each worker gets a break earlier. But it's not acceptable to deny that person care.
Much as many people would like it, being nasty and verbally abusive does not take away your human rights. And diaper changes and tube-feeding, for those who need them, are not privileges. They are rights.


Blogger Kate Burton said...

This is a really tough call. I've worked with adults with special needs and the problem you run into is that if they are very difficult to deal with they burn out the very people who have been hired to help care for them. I had one woman years ago that we had to help refer to another agency because she had just decimated 17 different staff. It wasn't that we didn't want to help her but we had no one else to send to her. I don't have a solution, I'm not sure who does.

10:25 AM  
Blogger Sarah said...

For one thing, what sort of horribly nasty person has friends that are willing to come over and deal with tube feeding? Having worked in health care and done tube feedings, I'm not sure how many average friends would help anyone with such a thing. To me, this speaks to pretty stellar friends and leads me to doubt that this woman is just 100% nasty to be around.

And one thing that all health care providers need to remember that if someone needs you, they are not at their best. There is a lot of emotional crap that often goes along with adjusting to living in our world as a person who needs another human being to perform basic life-sustaining functions. If the system/agency was addressing all of the needs of the client - mental/emotional/physical - then perhaps things would be better for everyone. But, all too often, those that are paying for the care will only provide the bare minimum life-sustaining care instead of the care that the whole person needs.

But I'm also sure many of us have our stories about having to fight with doctors/nurses/aides to get basic dignity and care in a healthcare setting. Far too many healthcare providers treat patients like they aren't real people. And the patient that actually insists that proper medical care be given and that respect be given is often shunned by the less-than-motivated healthcare worker.

7:04 AM  
Blogger Ettina said...

A friend of mine who works in old folks homes has dealt with racist clients (she's from Zambia). If someone was nasty only to certain kinds of people like that, they might have good friends. But of course they'd probably also do fine with care workers who they aren't prejudiced against (unless they're prejudiced against care workers, eg due to class prejudice).

9:24 AM  

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