MaineShare Celebrates 25th Anniversary

Twenty-five years ago, ROSC (Resources for Organizing and Social Change), Ability Maine's parent organization, helped start MaineShare. Actually, at the time, ROSC was called INVERT -- Institute for Nonviolence, Education, Research, and Training.

But never mind the alphabet soup! The scoop is that, in 1988, the people who now help bring you this blog and other Ability Maine content helped bring about a "social action fund" in Maine that came to be called MaineShare. (Read more about MaineShare's history.)

According to their website, MaineShare's mission is

To provide significant support to organizations doing progressive social justice and root cause work in Maine and to raise public awareness of their work

MaineShare provides financial support for over 40 Maine organizations in five categories: economic opportunity and human development, human services and health education, cultural diversity and the arts, the environment, and social justice and peace. ROSC is one of these organizations.

On June 17 at 5:30 P.M., MaineShare is having a celebration of its 25 years in existence. To find out more about the event, visit the 25th Anniversary page on the MaineShare site.

Larry Dansinger, one of the founders of ROSC (and therefore of MaineShare), urges ROSC members to attend the anniversary celebration, whatever your income or financial resources:

I have also been assured that the cost is sliding scale, not a firm $25 for everyone, meaning that you can pay less than or more than $25 also. So, please come if you can, whatever you can pay. 

 Hope to see you there!

Tick-Borne Disease on Rise in Maine

by Sharon Wachsler

On May 1, 2014, the Maine Center for Disease Control and Prevention and the Maine Department of Health and Human Services issued a report, [PDF] Maine Public Health Alert: 2014 Lyme Disease Information, which provides information and resources on tick-borne disease in Maine. The document provides good information and links in some respects, and in other respects falls short of what Mainers -- and, more importantly, the health care providers of Maine, need to know about tick-borne disease.

The report starts by announcing that May is Lyme Disease Awareness Month in Maine and states that Lyme disease cases have been on the rise in Maine, and that the state expects that increase to continue. In fact, new cases of Lyme have already been reported in 2014, and the state expects that number to increase as the weather warms up. Last year, a record high of over 1,375 cases were reported, with incidence in every county. The state expects the number to be even higher this year.

The report gives information about how to properly remove ticks and urges people who remove ticks from themselves to save and send the ticks to the University of Maine Cooperative Extension Tick Identification Lab. The Tick ID Lab will let the person know what kind of tick it was, if it was engorged (had been feeding long enough to transmit disease), and if it carried the bacteria for Lyme disease. The cost for submitting a tick is ten dollars.

The report also warns that the tick-borne diseases, babesiosis and anaplasmosis, are on the rise in Maine, as well, and that testing or treating for Lyme disease is not sufficient if other infections are present.

The document urges citizens to report cases of Lyme to the state:

Lyme disease is a reportable condition in the state of Maine. Report all diagnosed erythema migrans rashes and all positive lab diagnoses. Cases can be reported by fax at 1-800-293-7534 or by phone at 1-800-821-5821.

All the above information is useful, and I urge Mainers to make note of it. Some additional information that the guide does not cover is below.

The guide refers several times to other tick-borne diseases reported in the state, but specifies only babesiosis, anaplasmosis, and powassan, possibly because these diseases were all reported to the state last year -- with multiple cases of babesia and anaplasma infections. Passing reference is made to Rocky Mountain spotted fever and ehrlichia, but no mention is made of bartonellosis, another common tick-borne infection. Mainers should be aware that the microbes that carry babesia, anaplasma, bartonella, and ehrlichia are present in both deer ticks and dog ticks, and that if tick-borne disease is suspected, it is important to consider the possibility of multiple infections, sometimes referred to as "coinfections."

The guide also refers exclusively to the Infectious Disease Society of America (IDSA) diagnostic and treatment guidelines. Unfortunately, IDSA guidelines for diagnosis and treatment of tick-borne disease are woefully inadequate and contribute to the misdiagnosis and undertreatment of tick-borne disease in the United States. Mainers -- especially Maine health care providers -- who want a more comprehensive assessment, diagnostic, and treatment approach to tick-borne disease may wish to use the International Lyme and Associated Diseases Society (ILADS) guidelines, instead.

The Maine guide also falls down when explaining about how to diagnose Lyme. For example, it does not explain to readers that diagnosis of Lyme disease does not require a positive blood test. A blood test is NOT required to diagnose Lyme disease. Anyone with an erythema migrans, the rash often associated with Lyme, should be diagnosed with Lyme; a blood test is unnecessary in this case.

Further, laboratory tests -- especially the two-tier testing the Maine guide recommends -- are notoriously inaccurate for tick-borne disease, frequently showing false negatives (saying the patient does not have the disease when they actually do). If a patient or doctor want a somewhat more reliable Lyme or other tick-borne disease test, a lab that specializes in tick-borne disease testing is preferable. In the US, the two options are Clongen Laboratories or IGeneX Reference Laboratory.

The guide also does not refer doctors or patients to Maine's own Lyme disease organization, MaineLyme. MaineLyme is a nonprofit organization devoted to decreasing cases of tick-borne disease in Maine through awareness, prevention, education, and advocacy. MaineLyme's website provides information on Lyme disease in people and animals, prevention, and patient support.

Visit the MaineLyme website.

GrassRoots Organizing Workshop Sept 26-28, Bryant Pond, Maine

Resources for Organizing and Social Changes (ROSC) presents

GROW (GrassRoots Organizing Workshops)

New England Weekend

September 26-28, 2014

Bryant Pond 4-H Camp in Bryant Pond (beautiful location on Christopher Lake in western Maine)

Learn and hone organizing skills, enjoy beautiful surroundings and healthy food, network with old friends and meet new ones with similar interests.

Cost on a sliding scale basis so all can attend.

Child care provided and we can help to coordinate transportation.

We will be sending out a list of workshops and more info in the summer. This year's theme is "Effective Tactics for Organizing."

Visit the ROSC website (after late-July) to register or ask for a brochure to register by mail or email.

For more information, a brochure (coming soon), and transportation help, contact:

Jacqui at  (207) 284-3358 or jacquio50@yahoo.com
Sha’an (802) 272-9959 ormouliert@vtlink.net
Larry at (207) 525-7776 or rosc@psouth.net 

Visit us online: http://resourcesforsocialchange.org/

Finding Good Medical Professionals for Kids with Disabilities

Pamela Wilson of Bella Online has written an informative and supportive guide for parents of children with disabilities who are trying to find good doctors or other health professionals for their kids. "Asking More from Medical Professionals" includes several paragraphs of tips and discussion, followed by links to other resources.

Some of the tips include

• For parents whose children have a condition or health problem that is new to the family, it may be helpful to seek out an adult with the same diagnosis to learn more about their children's healthcare needs. 

• Another serious consideration is how comfortably staff and doctors relate to the child during medical visits, exams and discussions. When we take our children in to their medical appointments, we are teaching them how to be lifelong advocates for themselves. Staff who do not treat babies and children with respect, consideration and kindness teach them to expect very little from alternate caregivers. 

• It could be that it is easier and of greater benefit to your child to establish a relationship with a good doctor and provide them with up to date information about your child's condition than to trust in a medical professional who seems to have the reputation of having 'many patients' with your child's condition. 

• A doctor who knows your child as an individual is much more likely to attribute uncharacteristic behaviors or other symptoms to an additional developing medical condition. Families of children who do have or will develop a dual diagnosis need medical professionals who will listen to their concerns and observations. That in itself can save a child's life.

Links are provided to numerous other articles and discussions of relevance, including how to talk to your child's doctor, pain management, "Breaking Up with Doctor Normal," and posts on topics such as discrimination, disability, and advocacy in medical settings.

Read the post on Bella Online.

"Mental health worker" files federal suit against state of Maine for failing to protect her before stabbing

Multiple newspapers and TV news stations in Maine reported today that
Jamie Hill-Spotswood, who was injured on the job at Riverview Psychiatric Center in Augusta in March of 2013, has filed a federal lawsuit against the state of Maine for failing to protect her at work. Her lawyer contends that the Department of Health and Human Services was guilty of "inexcusable failure to protect employees from foreseeable and grave danger."

Hill-Spotswood, whose job description is given as "mental health worker" in the related articles, was assaulted by a male patient on a locked ward. He stabbed her with a pen repeatedly until other patients and staff intervened. Hill-Spotswood has needed to have surgery and occupational therapy for her hand, which she used to protect her face in the attack.

According to the Portland-Press Herald's story

Jamie Hill-Spotswood, had told Roland Pushard, the assistant director of nursing at Riverview, less than a week before the March 16, 2013, attack that she was 18 weeks pregnant and that she felt unsafe because there was no security on the hospital floor where she worked, she said in the suit filed Monday in U.S. District Court in Bangor.

Hill-Spotswood said in the suit, filed on her behalf by her attorney Michael Waxman against Department of Health and Human Services Director Mary Mayhew, that the floor was populated by patients known to be “very, very violent” and known to have threatened or attacked workers and patients on numerous occasions. 

She also contends that the state did nothing after she told the Riverview staff that she felt unsafe and that Riverview never disclosed to her that her accused attacker, Mark Murphy, had a “prolific history of violence,” Waxman wrote in a six-page complaint.

Many of the articles focus on the fact that Hill-Spotswood was pregnant at the time of the attack, but information about how the attack affected the pregnancy was not included. Most of the articles include a photo of Mark Murphy in prison orange.

Earlier stories about the assault discussed whether Murphy was criminally responsible for his actions at the time -- whether the assault resulted from a paranoid state or whether it resulted from his anger and frustration when staff canceled his planned visit to his parents' home.

Assaulting an inmate is reasonable grounds to be fired, says Human Rights Commission

by Sharon Wachsler

Media coverage of the Maine Human Rights Commission rulings on disability discrimination complaints have been appearing pretty frequently lately. The Friday edition of the Kennebec Journal carried an article entitled, "Commission told Franklin County Jail guard not fired for disability."

Robert Shufelt of Jay was a corrections officer at the Franklin County Jail who was fired after he assaulted an inmate. Shufelt, who represented himself in the complaint, contends that he was fired because of a mental disability. According to the KJ article,

Shufelt argues in the commission report that another officer at the jail assaulted an inmate and wasn’t fired.

Hard to know which part of that argument is most problematic! (The other officer who assaulted an inmate was investigated, suspended without pay, and warned that if there was another incident, he would be fired.) The Commission said that Shufelt provided no proof that he was fired due to his mental condition.

Read the whole article here.

Maine activists seek labeling for hormone-dysrupting chemicals in consumer products

Paige Holmes of Lisbon started a recent blog post by explaining how careful she is, as a consumer, about her family's health:

Every trip to the store involves a careful assessment of what’s coming into my home and into the hands (and mouths) of my two young sons.  I am probably more aware of chemical safety than the average consumer, as I have spent the last several years and transitioning away from goods that are likely to contain harmful chemicals to safer alternatives.  I use glass instead of plastic food containers.  I’ve swapped out the vinyl shower curtain for cloth.  And I am thrilled every time I can see clear evidence that I’m avoiding the dangerous chemicals known to me, like the now common “BPA Free” labels on reusable water bottles.... 

I was one of 25 Mainers who volunteered to be part of a bio-monitoring study of phthalates, a group of hormone-disrupting chemicals that are widely used in consumer products.  We each provided urine samples which were tested for the presence of seven different phthalates.  This week the results were released by the Alliance for a Clean and Healthy Maine in a report titled, “Hormones Disrupted: Toxic Phthalates in Maine People”. 

I had the highest total level of phthalates in my body out of anyone in the group. My levels were higher than levels found in 90% of all Americans tested by the US Centers for Disease Control.

(Read Holmes's blog post, "Careful shopper or not, your body may still be polluted with toxic chemicals.")

Paige Holmes with her two sons

Holmes continues with what this might mean for her family, and what she's trying to do about it:

As a mom with two young sons, the implications of my phthalate levels are really frightening.  I know that these chemicals have adverse health effects on baby boys, including birth defects in male sex organs as well as reduced fertility and increased risk of prostate and testicular cancer later in life.  I also know that phthalate exposure is linked to many of the issues that teachers like my mom and sister are seeing more and more of every day: learning disabilities, behavioral and attention issues, and asthma.... 

Here in Maine, citizens are using the state’s Kid Safe Products Act (2008) to take matters into their own hands. We are now circulating a citizen-led petition that will initiate a rulemaking before the Maine Department of Environmental Protection on the reporting of phthalates in consumer products.The rule would elevate four phthalates to “Priority Chemical” status under Maine’s Kid-Safe Products Act and require manufacturers to report on which of their products sold in Maine contains the priority phthalates. In other words, Mainers are taking action to find out which products contain phthalates.

The Environmental Health Strategy Center of Portland blames Governor LePage for failing to act on this issue. Their recent newsletter states:

While the LePage Administration has stubbornly refused to take meaningful steps to protect families from toxic chemicals under the Kid Safe Products Act, Mainers are taking matters into their own hands. This spring, dozens of activists across the state helped gather signatures to force the LePage Administration to look at the science, and listen to citizens. 

How? Our citizen-initiated rule-making petition will effectively jump-start the regulatory process, calling on the Department of Environmental Protection to use it’s authority under the Kid Safe Products Act to require large manufacturers to disclose their use of toxic phthalates. The Portland Press Herald put it this way in their editorial, "Labeling would help keep toxins away from Maine kids": 

“Mandating the disclosure of phthalates in consumer goods is a minor technical action that could have a major impact.”... 

With our partners in the Alliance for a Clean & Healthy Maine, we’ve collectively gathered a grand-total of 1,693 signatures from 146 towns, representing every county across the state. That’s more than 10 times the minimum number required by the Department of Environmental Protection to initiate a rule-making! But we’ve only just begun. Next month, we’ll gather to at the State House to deliver the petitions in person."

EHSC asks other concerned Mainers to join them at the State House (for details, email EHSC) and to sign on to ask the Maine Department of Environmental Protection to act swiftly to a schedule a public hearing and adopt this common-sense proposal. (Want to help? Sign the petition to the Maine DEP to label phthalates in consumer products.)

Activist Organization Criticizes Disabled Legislator for Having "No Spine"

The May 6, Online Sentinel published a lengthy article about a liberal activist organization distributing a mailer that chastised a disabled Republican representative for having "no spine."

The Maine People's Alliance drew up a flier that pointed out the anti-Medicaid voting records of various of Maine's elected officials. Among these was Representative Dale Crafts of Lisbon, who is a wheelchair user.

The mailers were crafted to resemble drug prescriptions. They describe the Republican lawmakers’ ailments, including “no heart” for voting against expansion and “no spine” for not standing up to Gov. Paul LePage’s “bullying.”

Maine's People's Alliance has publicly and privately apologized to Rep. Crafts, who called the Alliance, "just a bunch of liberal windbags." Read the complete article here.

Baffling Decision by Maine Human Rights Commission

by Sharon Wachsler

Last week, the Kennebec Journal published the article, "Maine panel: No grounds for OOB official's claim of discrimination." Bill Robertson, former public works director of Old Orchard Beach, file a complaint with the Maine Human Rights Commission

alleging that he was discriminated against because of his hearing disability, and that then-Town Manager Mark Pearson retaliated against him by stripping him of sick leave benefits and not renewing his contract....

Granted, the whole situation with firings and rehirings and claims and allegations on all sides sounds confusing to untangle, as the Journal puts it:

Bill Robertson was fired and then re-hired last year during a tumultuous period that included the firing of the town manager and the recall of nearly the entire Town Council. 

However, the Human Rights Commission does not seem to be questioning whether audism and ableism were at play, just whether it was bad enough to be the cause of Robertson's firing:

[Robertson] said the discrimination and retaliation included Pearson making insensitive and degrading comments about his hearing, putting him on administrative leave, notifying him that his contract would not be renewed and stripping him of sick leave benefits. 

Robertson said Pearson repeatedly made comments about Robertson’s hearing disability in front of other town employees. 

The Human Rights Commission found that none of Pearson’s conduct was threatening toward Robertson and that the disability harassment claim was unfounded. 

“It may be that (the) town manager’s comments embarrassed (the) complainant because he drew attention to (Robertson’s) disability in front of others,” said an investigator’s report. “Objectively, however, the town manager’s comments did not rise above the level of occasional offensive utterances.” 

How many "offensive utterances" that "embarrass" an employee when his employer "draws attention to [the] disability in front of others" does the Maine Human Rights Commission think is an acceptable amount, I wonder. Read more about this wonky situation in the complete article.

New Webpage of Stats on Disability, Work, and Maine

If you enjoy statistics, pie charts, graphs, and other representations of data about disability, demographics, and work in the state of Maine, then hurry over to the Center for Workforce Research and Information's "Maine Workers with Disabilities" page.

Information is broken down by age, county, disability type, gender, and more.

Counties in Maine show lowest disability rates  (dark blue) to highest disability rates (red/brown)

There's a short AP article in the Portland Press Herald about how this page was developed because of "concerns that there is not enough state-specific information" about unemployment and disability in Maine.

Four Articles on Barriers to Navigating Portland for Disabled Mainers

On April 13, the Portland Press Herald ran "Living with disabilities in Portland, Maine, where every step's a challenge," on the physical and attitudinal barriers that face people with diverse disabilities in Portland, or in Maine, generally. The story, which ran in print and as well as video, follows three Mainers with disabilities and the challenges they face when navigating around the New England city.

The Portland Press Herald also wrote profile pieces on each of the three Mainers interviewed for the larger story of being disabled in Portland -- a blind college student, an activist who has MS, and an office worker with Down syndrome. Each of these companion pieces are also well worth the read.

Dylan Hedtler-Gaudette, a student at the University of Southern Maine, is subject of the first companion piece, "Losing his vision, USM student calls for 'common-sense accommodations and adaptations'":

Almost every day, Hedtler-Gaudette walks nearly a mile to the USM campus, a route he knows well. Along the way, he finds the best and the worst about life in the city.... 

Each strike with the cane is a chance for Hedtler-Gaudette to feel the terrain ahead of him, to detect where he is in relation to the sidewalk’s edge, and most importantly, to avoid obstacles and dangers. 

“The constant imposition of bricks and cobblestone is like the bane of my existence when it comes to my cane,” he said. 

At the corner of Park and Deering avenues, Hedtler-Gaudette presses a button to cross. “Wait,” a computerized voice intones. The traffic light changes, and a new, chirping tone guides him across the busy intersection. There are far too few of these audio crossing aids in the city, he said.... 

As a home for a blind person, Portland has its strengths and weaknesses, he said. Because of its compact size, the city is largely accessible on foot. Hedtler-Gaudette walks everywhere he can, including to the school’s gym, where he works out almost daily.... 

But there are still impediments that remain out of his control. Snow and ice are constant risks. 

Even more basic, and unfortunately unchangeable, is the configuration and naming of city streets. In cities such as New York or Philadelphia, blocks are arranged on a grid and adhere to predictable numbering systems. 

No so in Portland and Boston, Hedtler-Gaudette said. “As charming and quaint as the old Colonial-era port cities are, they make no sense in terms of their layout,” he said.

 Read the rest of the story about Dylan Hedtler-Gaudette.

The second article profile piece, "For wheelchair users, navigating Portland's streets requires patience," features activist and powerchair user, Reneee Berry-Huffman. The article focuses mostly on the frustrations and uncertainties of transportation for people with mobility impairments in Portland, especially its paratransit and Mainecare ride system:

Berry-Huffman, a human rights activist, was diagnosed with multiple sclerosis 18 years ago and has been using a power wheelchair since 2009. She is now active with the Portland Disability Advisory Committee and encourages others with disabilities to advocate for themselves. 

While she waited for the Regional Transportation Program bus to pick her up, she called a committee member to ask him to get the meeting started without her.... 

She was a half-hour late to the meeting, getting to the table just in time to join a conversation with city employees about public transportation, a common source of frustration for many people with disabilities in Portland. The Metro buses can be unreliable and riders with disabilities say they often encounter people who taunt them. 

After the meeting, Renee Berry-Huffman sat in the sun outside of Portland City Hall.... Just a few blocks away, the city’s Old Port is more or less inaccessible to her, she said. The cobblestones are a nightmare for her wheelchair and many businesses are hard, or impossible, to get into. 

The bus was supposed to pick her up at 12:15 p.m.... She now has five minutes to get home to meet her next ride, an ambulance paid for by MaineCare that will bring her back into Portland for a doctor’s appointment at 1 p.m. The MaineCare ride is only authorized to pick her up at home, even though her meeting was only a few blocks from the medical building.... 

By the time Berry-Huffman gets back into Portland, out of the ambulance, over a bumpy sidewalk and into the lobby, she’s 40 minutes late for her medical appointment and is told she has to reschedule.... This would have been Berry-Huffman’s first visit with a new doctor after being dropped as a patient by a previous provider because of late rides and missed appointments.

 Read the article featuring Renee Berry-Huffman.

The third profile, "Woman with Down syndrome faces hostility on Portland streets," features Christina Mailhot, an office worker in an architecture firm, who often stays home to avoid cruel comments from strangers:

“I wish people would just leave me alone.” 

Sometimes they ask for money. Other times they follow her, she said. Often, walking around Portland, she hears the same thing she has since elementary school. 

“People start calling me names, like ‘retard,’” she said. 

Mailhot, 35, has Down syndrome. She also has two part-time jobs and a one-bedroom downtown apartment. But, despite her independence, she feels trapped. 

“You can’t go out of your own apartment without getting teased,” she said. 

Mailhot spends most of her free time inside, reading gossip magazines and watching videos on YouTube. Sometimes, she thinks about moving back home to Lewiston with her mother, but she knows it isn’t worth it. 

“I worked so hard to get here,” she said. “I don’t want to go back.” 

Read the profile of Christina Mailhot.

Each of the three profiles also include photo galleries of each of the people who were interviewed. Please tweet or email the paper to let them know what you think of on people with disabilities in Maine!