Yesterday, I checked the blog ballastexistenz (which I do about once a week) and found an urgent plea from Amanda Baggs regarding a friend in dire straits.
The urgent plea dealt with a friend, living in Sudbury, Ontario. Minna Mettinen-Kekalainen is 42 years old. She has aspergers and ALS. She needs daily care and support for basic physical needs – such as bathing and getting her adult diapers changed. Minna isn’t getting that care.
Driven by sheer despair and exhaustion over living without needed support, she went on a hunger strike, refusing to let friends give her the nutritional supplements she needs to live.
Her story was told – badly, in places – in the Sudbury Star.
Obviously, I didn’t blog about this yesterday. Like many other individuals, I decided to heed Amanda’s plea:
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.
A lot has happened over in less than 24 hours. There has been increased pressure on the agencies involved to give Minna the support and care she needs and deserves. Some students have organized a protest on her behalf.
Importantly, for now, at least, Minna is encouraged enough to have ended her hunger strike. I have exchanged a few emails with her and so have others.
That doesn’t mean we can let this rest, though. Unless she gets the support she needs, she’ll surely be right back where she was. Some terrific folks have put together some tools and suggestions to help change this situation.
Andrea Shettle at ReunifyGally has put together a great list of suggestions and resources for helping in this effort. I am reproducing it here at her open invitation which is included at the end of her blog post:
We in the disability human rights community have an opportunity to save a life. A quick summary: a woman with disabilities in Sudsbury, Ontario, Canada (Minna Mettinen- Kekalainen) is SUPPOSED to be receiving home care services. The North East Community Care Access Center has been denying her these services. Minna says this is because she had complained about their nurses because they had failed to follow her doctor’s orders. Minna was on a prolonged hunger strike, starving herself to death in an attempt to pressure the CCAC to provide her the services she needs. She has started eating again, at least for now. But she is still being profoundly neglected. Please take a few minutes to support efforts among disability rights activists to save her life.
1. First, read more about the situation at the following two links. You will also want to read the comments that people have left, because people are using the comments area at this blog page to exchange more information and ideas on how people can help: http://ballastexistenz.autistics.org/?p=572 and http://ballastexistenz.autistics.org/?p=573
2. Send an email to the following people to urge them to intervene on Minna’s behalf so she can receive the home care services that she is asking for: 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 email addresses, too. If enough individual people write to them, they may take notice.
3. Consider also communicating with the North East Community Care Access Center on Minna’s behalf. This is the center that is refusing care to Minna (unfortunately there seems to be no email contact for them):
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 (SudburyTo access the Long-Term Care ACTION Line call: 1-866-876-7658 or TTY: 1-800-387-5559.
(More detail on their Complaints and Appeals Process at http://tinyurl.com/aeu6vt)
4. Also consider communicating with the Maison Vale Inco Hospice–this is a different place (NOT related to the North East Community Care Access Center), and Minna would like to be admitted there.
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 Therrie5. If you will be in Ontario on January 23, consider joining a protest and march on Minna’s behalf.
6. Join the Facebook group, “Minna’s Hunger Strike–Call to Action for an ALS Patient Denied Care” to learn the latest news on what is happening with Minna’s case and what people are doing to help. If you are not already a member of Facebook, it only takes a few minutes to sign up for a free account.
7. Please circulate this text further via your network of contacts in the disability and human rights communities, Facebook page, blog site, etc.
Thank you for taking action.
Finally, if you would like to hear from Minna in her own words, she has put up a nicely accessible section on YouTube, with the transcript of what she says included in a sidebar on the left of the screen. You can find it at the Sudbury CCAC exposed channel.
With your help, this woman can get the help she needs to live her life.
Please come back for updates as they become available. –Stephen Drake