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

Standard

(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.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

24 responses »

  1. Today just happened to be the once every week or so that I check this blog. I have written about Minna’s situation and what she really needs to a number of advocates/activists in the UK – labeling it an “emergency” in the header. I wish I could do more, but it’s the best I could think of.

  2. She’s Canadian, isn’t she? Wouldn’t Canada be a better place to start? I don’t know any of the right people. If you do…

    …the other thing I’m worried about in all this is that this is exactly what agencies want — they want people like her to die, and going along with it might just mean they’ll wait this out and let her die rather than give her services, figuring “she’ll die anyway” or something. She’s giving them exactly what they want (getting rid of her) and that’s not going to persuade them to do anything.

    This all has me quite freaked out, and it’s not the only situation I know of where someone’s done something like this.

  3. It isn’t clear from the newspaper website whether this is Sudbury, UK (of which there are 3), Canada (of which there are 2) or US (of which there are 2).

    If she is in the UK, then i could get a fairly large network of UK activists involved, and potentially get direct action (such as an office occupation) happening. If in the US or Canada, i wouldn’t be able to help at all (beyond perhaps telling a couple of activists in those countries that i know through social networking sites).

  4. I realized that as soon as I sent it. Unfortunately, I’m only one day post-migraine and shouldn’t have rushed. My neurons still aren’t firing in the way that is normal for me. I have already sent my apology to the original list and edited a plea to my much longer list of Canadian activists/advocates.

  5. Ah, scratch that. Just seen that the article contains the phrase “Ontario College of Nurses”, meaning it’s the Sudbury in Canada. Don’t think i can do anything beyond telling a couple of Canadian disability rights bloggers…

  6. I’ve gotten one reply. And it’s someone who is willing and able to do something. There are ways to connect to Minna – probably through the newspaper reporter. But it would save time if you have contact info. If you have contact info, please email me – sndrake at aol.com

  7. I have several relatives in Ontario, but I don’t know if any of them would be able to help. One of my aunts works in the field, but she’s in Toronto. One of my uncles publishes an in-house mag for the gov’t in Ottawa. I am going to send both of them the links to both the article and the blog post, and hopefully one of them will know what to do or have an idea of something that can be done.

  8. Here’s contact info that might help:

    Sudbury MPP Rick Bartolucci
    Constituency Office email: rbartolucci.mpp.co@liberal.ola.org
    Ministry of Community Safety & Correctional Services email: rick.bartolucci@ontario.ca

    Minister of Health & Long-Term Care David Caplan:
    ccu.moh@ontario.ca

    Non-Canadians can use these too. If enough individual people write in about this, the above guys may take notice.

    As far as spreading the word: try posting the story and the contact emails to any web forums or message boards you’re a member of, regardless of their subject matter. (This is, after all, a human rights violation of general interest.)

  9. I’ve contacted a couple of organizations (FRIDA and DAWN Ontario) about Minna; so far, FRIDA responded. I’m wracking my brain to think what else I can do from here. Will definitely keep thinking and following what’s going on.

  10. Here’s some contact information that might be useful to people who are contacting organizations on Minna’s behalf. Courtesy of Bluebird of Chaos on IntensitySquared and Google.

    Sudbury MPP Rick Bartolucci
    Constituency Office email: rbartolucci.mpp.co@liberal.ola.org
    Ministry of Community Safety & Correctional Services email: rick.bartolucci@ontario.ca

    Minister of Health & Long-Term Care David Caplan: ccu.moh@ontario.ca

    North East Community Care Access Centre (the centre that is refusing care to Minna)
    Head Office/Sudbury Branch
    1760 Regent Street
    Sudbury ON P3E 3Z8
    (705) 522-3461 or 1 (800) 461-2919 (Sudbury)

    Maison Vale Inco Hospice (the place Minna hopes to gain admittance to)
    (705) 674-9252
    1028 South Bay Rd. Sudbury, ON P3E 6J7
    Website: http://www.maisonsudburyhospice.org/
    Resident Care Coordinator Elaine Klym: elaine@maisonsudburyhospice.org
    Executive Director is Léo Therrien

  11. Hi, I’d like you to know I’ve joined the Facebook group to support Minna, written about her situation, and invited over a hundred people to watch her YouTube video. Sending you and Minna prayers, love, and positive energy!

  12. Pingback: Please help to save Minna’s life « Sanabitur Anima Mea

  13. Pingback: Urgent: Help Differently-Abled Woman Get Proper Care « Like a Whisper

  14. I’m expecting a phone call soon, but I thought you should know – The Sudbury Star is reporting that Minna’s home care will resume this coming Monday (February 2). Also good news – MPP Gelinas wants to keep digging to find out how many people in the province have been abandoned in the way Minna was.

  15. I have had a response from the college of nurses of Ontario saying they are investigating. It took quite a long time for them to respond (I sent them an email many weeks ago), but they’ve confirmed they are in fact investigating the matter and are using this blog and other resources (such as the youtube videos) in their investigation.

  16. Pingback: www.aspie-editorial.com » Blog Archive » Ongoing Updates: Canada – Urgent Call For Immediate Action To Reinstate Minna Mettinen-Kekalainen’s Home Care As Hunger Strike Continues

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