Tag Archives: ALS

Anyone reading this who can do something — please do, because Minna’s dying otherwise.

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(Edited a few times as thoughts pop into my head.)

It turns out I know the woman described in this article (which is frankly terrible — it makes this look like a “right to die” case when it’s a hunger strike because of being denied services):

Mettinen-Kekalainen is alone, bedridden or confined to a wheelchair, unable to change her adult diapers or bathe herself, and in constant pain.

Her only source of nutrition is the feeding tube in her stomach, but she is refusing to let friends administer the four cans of supplement she should be receiving daily.

Once the subject of newspaper articles about her indomitable spirit in coping with ALS and a role model for people raising autistic children, Mettinen-Kekalainen (who also suffers from Asperger Syndrome, an autism spectrum disorder) is not receiving home care.

She says it’s being denied by the North East Community Care Access Centre because she complained about nurses contracted by the organization whom she claimed were not following her doctor’s orders.

I had not heard from her in years, and did not know she was living in such awful conditions (by which I mean the lack of care). I don’t think the hunger strike is a good tactic at all — it’s giving this agency exactly what they want. Hunger strikes only work if people care whether you live or die, which this agency obviously does not. I’m afraid they’re just going to hold out until she’s dead. But this is the situation, and I certainly can’t talk her out of it, so someone needs to get something done before that happens.

I didn’t know what was happening to her until moments before writing this. I know, however, several people, including myself, who have physical conditions in addition to autism, and who receive or require what most people would consider very intensive services as a result of the combination.

I have watched several of them end up being accused of being somehow dangerous or abusive, merely for advocating for their right to appropriate care.

Our non-typical social skills make us especially vulnerable to being sidelined and accused of improper conduct, and to others believing it even though it is not true (and make no mistake, people intent on doing us harm use that fact to their fullest advantage possible).

But in any case, even if we were truly the most hateful people on the planet (which I know Minna isn’t, and neither are the people I know — and Minna couldn’t be any threat to them even if she wanted to be), that would be no reason at all to refuse to provide us services.

The truth is that many physical disability agencies don’t want to provide services to people with developmental or psych labels — they figure that’s someone else’s problem and they think they’re above having to deal with us. So those of us with combinations of developmental, psych, and physical conditions (the strict divisions between such being largely societal anyway — with some conditions even seeming to have more than one different name depending on which branch of medicine claimed them first) often end up falling through the cracks and dying as a result.

Last I heard, nursing agencies are not allowed to administer the death penalty for having a bad attitude or unusual social skills. But this is exactly how many of them handle people they consider problematic. I have watched other such agencies, as well as staff in nursing homes and mental institutions, fail to provide necessary services for survival, to people who needed them, because they did not happen to like the person. There is a reason that serial killers and other people of questionable conscience like such jobs — they can characterize someone as a problem, or as “dying anyway”, and get away with this crap, especially because there are double standards where if we are violent, or even possible to mischaracterize as such, then it’s because we’re defective and if other people are violent to us then it’s also because we’re defective.

Don’t let the newspaper fool you — it talks about Minna “ending her suffering” which is a classic code phrase (I am terrible at using those, but can certainly often detect them in others) designed to call forth images of her disability as the main cause of suffering, and all the injustice she is suffering as incidental, or even inevitable. It isn’t. Severely disabled people are not committing suicide in droves, most of us are still around. What drives people to despair — and, often, suicide — is having crappy care (often includng abuse) and neglect be the only two options that seem to be available.

And I know, because I’ve seen it, that driving people to despair is a way these people operate. They know that desperate people often kill themselves outright or stop eating. They know that we are in what most people regard consciously or not as an expendable class of people. And they know that they will never get punished for murder if only they can drive us to suicide. (In fact a friend once told me about a guy who never laid a finger on his wife — a disabled woman — but who talked her into suicide by keeping her away from everyone and everything she cared about, emotionally abusing her, and telling her what a burden she was on him, even calling her a vampire who sucked the life out of him. He wrote a book about his techniques and was never charged with murder or even abuse.)

But I have a request for anyone with any power to do anything about this:

Don’t get bogged down in how sad you feel about what is happening. Don’t — if you can do anything more — just write about this. Don’t treat her death as the only inevitable conclusion in all this. Find a way to pressure the right people until Minna gets her services back, free of abuse/neglect and free of coercion to avoid reporting abuse/neglect.

You might not believe it can work, but it can — I’ve done it. This is someone’s life here and something can be done. I know because I’ve put pressure like this on agencies myself on behalf of others — and a hospital suddenly started providing appropriate care to one person, a home nursing agency started providing appropriate care to someone else. (This is a lot of what I do when I’m not on the Internet.) Often what they need to know is that you are watching and that the consequences for them of not providing appropriate care will be worse than the consequences of providing appropriate care. They won’t necessarily do this for any of the right reasons, but find a reason for them to do it and then put as much pressure on as you have to.

I’m not able to do this in this context — I have literally no energy left over (barely enough to write what I do online — and lucky that I was able to write this today, when just as important stories on other days I haven’t been able to), none of the needed connections, and no ability to form such connections rapidly enough. But someone who reads this has to be, I know my blog is widely read. So don’t fall prey to the Bystander Effect where you think “someone else will take care of it, there’s so many people reading this” — people die because of the bystander effect. Don’t let whether you like her or not determine what you do (I have friends who quarreled with her a few years ago, but I sure hope they know that liking someone or not doesn’t determine whether they should live or die — if you take that attitude you’re no better than the nursing agency). And don’t stop the moment you encounter some resistance from the medical establishment — and you likely will encounter it, so brace yourself.

Someone needs to be out there picketing and otherwise publicly embarrassing the agency itself and getting reporters involved in that — putting out newspaper articles that don’t call Minna’s credibility into question or confuse the issues. Someone else needs to be going to the proper authorities on this and seeing if they can get any of them to do anything. I can’t do that even locally right now, let alone in Ontario, so someone, somehow, needs to take the lead in this who actually can.

Don’t take the easy way out here. Don’t find excuses not to do something if you’re capable of doing it, or to do a half-assed job if you’re capable of a… whole-assed(?) one. Don’t let Minna die. And if she does die, don’t let up on the agencies that ultimately caused it by neglecting her when she needed them the most, find some way of holding them accountable.

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