Short Stories & Essays in Breath & Shadow Disability Literary Journal

The Fall 2014 edition of Breath & Shadow, Ability Maine's journal of disability literature is out! It features short fiction by Stacye Cline-Robinson and Lela Marie De La Garza.

There's also a delicious three-part essay on experiences relating to being a low-vision musician and singer by Emily K. Michael. Here's an excerpt from the third section of "Sight and Singing":

One year ago, I reclaimed my place on the risers next to 60 singing women. I had been absent from this chorus for six years, singing where I could - in college chorales, with friends, at karaoke nights on campus, and, once, with a talented jazz combo in St. Augustine. 

Now that I'm back with my chorus, I have the chance to improve many aspects of my singing technique, and my favorite methods incorporate tactile elements. During rehearsal, one director asks us to turn to the left and place our hands on the belly of the singer in front of us. We should feel movement in the singer's abdomen if she is breathing correctly. One hand rests gently against the singer's ribcage while the other presses her belly - and, sure enough, her breathing pushes both hands forward. Our exercises include a plethora of breathing sounds, routines of sh sh, hee hee, ff ff, ts ts. Hands on each other’s bellies and ribs, we complete the routines with fierce concentration - until a singer murmurs, "Get ready, the baby's coming!"

Read the read of Emily K. Michael's essay, as well as the two short stories, at Breath & Shadow.

New Disability-Inspired Poetry at Breath & Shadow!

Breath & Shadow, the disability literary journal produced by Ability Maine, has its Fall 2014 issue out now!

This edition features poetry by Jenna-Nichole Conrad, Mark Cornell, Sergio Ortiz, and Raud Kennedy.

Here's an excerpt from "Define Me," a poem by Jenna-Nichole Conrad to whet your appetite:

...And here is the poet, pen-stained

And naked in her thoughts. She has planted
A garden in her armchair;
It is time to harvest

To read her other poem, and the other poems published this month, please visit Breath & Shadow!

Autoimmune Disease Links

Note: Information in Ability Maine blog posts, website articles, Facebook or Twitter posts should not be construed as an endorsement or recommendation about organizations, agencies, companies, products, and services. We share these resources for informational purposes only. Always do your own research on any product, company, organization, or service!

Here are a bunch of links to websites relating to autoimmune disease.

Doctors in Maine who diagnose or treat autoimmune diseases

Autoimmune disease management at Maine Medical Center

Women's Health.gov Autoimmune Diseases Fact Sheet

The Comprehensive Guide to Autoimmune Disorders and Autoimmunity

AARDA -- American Autoimmune and Related Diseases Association

AARDA on Autoimmune Disease in Women

International Foundation for Autoimmune Arthritis

Arthritis and the Benefits of Swimming

Maine Agrability Supports Farmer with Physical and Emotional Disabilities

by Sharon Wachsler

Having experienced the physical and mental healing benefits of working with animals and being outdoors, I'm particularly eager to share the story that WABI TV ran on Winterport goat and chicken farmer, Che Sweetland. Sweetland owns Gentle Meadow Goat Farm.

"UMaine Program Helps Farmers with Disabilities" tells Sweetland's story:

“In 2010, I started having problems with PTSD, post traumatic stress disorder, and anxiety, where I found that I was not choosing to leave my house as much as I should.”

Che Sweetland acquired some chickens as a therapeutic tool. 

“To make it so I had to leave my house once a day to take care of the chickens,” she explains. “And when I realized that my body and my emotions really liked the farming lifestyle, I ended up getting some goats.”

Both the text of the story a video of the news clip are online. (It is not an autoplay; you click on the video player to view or listen to the story.) There are lots of fun sounds and sights of happy chickens and goats, as well as Sweetland's story of creativity and ingenuity in creating a rich life following years of trauma.

The WABI story also shows how the UMaine Cooperative Extension School can help disabled Maine farmers continue farming. Because Sweetland has back and neck issues that were interfering with farmwork, she contacted them and got help setting up an ergonomic milking station and other assistance:

“Maine Agrability is a state-wide program that helps farmers with disabilities or chronic illnesses keeping farming,” explains Richard Brzozowski, an agriculture extension educator. 

It started four years ago through a grant from the U.S. Department of Agriculture. The idea is to provide those in agriculture as well as future farmers with informational tools. The program is also available to veterans and will soon be reaching out to those in the aquaculture and logging industries.

“You don’t look at the disability part,” explains Brzozowski, “you think of what they can do, the ability part.” 

To view or read the complete story, click here. More information on the Maine Agrability program at umaine.edu/agrability or at 800-287-1471. To order goat milk soap, visit Gentle Meadow Goat Farm.

BDN Profiles Brewer Couple on How Benefit Systems Keep Disabled Impoverished

The Bangor Daily News recently ran an excellent article profiling a Brewer couple who explain how state and federal policies affected disabled people and how many policies keep people impoverished. The article -- 'Social Security is not the way to live': Maine couple talks growing older, living with disability -- is part of an interesting new BDN article series:

In this monthly series, the authors will introduce you to people who are apt to be your neighbors, are struggling to make ends meet and have been affected by specific state policies.

In the August edition of this series, Sandy Butler interviews an Claire El-Hajj and Lonnie El-Hajj. Claire has MS. Lonnie is a stroke survivor. Both went on SSDI in the 40s. The article details how lots of seemingly small things -- medication co-pays, wheelchair repair, a malfunctioning freezer -- add up to keep them in a constant state of financial stress and unpredictability. And how getting married severely adversely affected their livelihood:

Claire and Lonnie’s marriage has led to some loss of services for Lonnie. His Social Security Disability Insurance check is just over $800 per month....
Prior to his marriage to Claire, he was eligible for Medicaid (MaineCare), Section 8 housing and the Supplemental Nutrition Assistance Program, also known as food stamps. He also received some personal care assistance and help with transportation.
Lonnie and Claire’s combined annual income puts them just over the income limit to receive any means-tested benefits or services. They live together in the Brewer apartment Claire has lived in since she left her house.

The article ends with a reminder to readers to consider what effect privatizing Social Security would have on people such as the El-Hajjs. Read the complete article.

Maine Independent Living Commission Formed by Maine Lawmakers

Maine Public Broadcasting Network reports on a new state Commission on Independent Living and Disability formed earlier this month:

Rep. Matt Peterson, a Rumford Democrat, sponsored the legislation creating the state Commission ... and he co-chairs the group.
"Technology, architecture, personal assistants - these are the major barriers and the ones we hope to tackle with some really specific initiatives," Peterson says.

For more information on this "Blue Ribbon" commission, see the short MPBN article, MaineHousing.org's legislative action page, or read the bill summary at MaineLegislature.org.

Talkitt Speech App for People with Speech Disabilities

By Sharon Wachsler

According to the Talkitt Indigogo site, one-and-a-half of the world's population has a speech disability, including people with ALS (amytrophic lateral sclerosis), Parkinson's disease, cerebral palsy, stroke and other brain injuries, autism, and more. I had a speech disability for several years due to chronic Lyme disease, and I would have loved something like Talkitt!

Talkitt is a unique speech recognition app. It learns the patterns of the user's voice, and then re-speaks what they said in standard language so that others can understand. The Indigogo page says it can be used with any language ("French, Chinese, Klingon")! More from the site:

In the immediate future, Talkitt will run on any smartphone or tablet. Later, Talkitt will run on PCs, laptops and wearable devices allowing the person to speak freely with anyone, anywhere and anytime. 

For more information, check out the Talkitt This Is My Voice page on Indiegogo.

Sensory-Friendly and Fun Costumes for Kids with Disabilities

Halloween is coming up, and Partners for Youth with Disabilities has a terrific post on Spooktacular Costumes for Kids with Disabilities! There are tips for buying costumes, but many more for DIY and costumes on a budget.

The site includes lots of fun pictures of kids in great costumes, including a Dr. Who with TARDIS wheelchair and a giraffe whose front legs are her crutches! Check it out:  http://www.pyd.org/blog/halloween-costumes-disabilities-accessible-inclusive/

College Resources for Students with Disabilities

Bestcolleges.com has a new page devoted to College Resources for Students with Disabilities. It's a good basic guide to legal rights, campus life, and many resource links on disability and college life.

Its legal focus is Section 504 of the Rehab Act, but it also covers the ADA, IDEA, and the Assistive Technology Act. It gives general tips on finding a college and getting set up as a student.

There are sets of links to websites, apps, and software for Deaf/hard of hearing, visual impairments, physical impairments, autism, ADHD, learning disabilities, and dyslexia. More info: http://www.bestcolleges.com/resources/disabled-students/

For a list of colleges in Maine (not relating to disability), see Online Colleges in Maine: Universities & Community Colleges.

Richmond man did not receive reasonable accommodate in eldercare housing

CentralMaine.com reports in "Richmond Eldercare home faulted by human rights panel" that the Maine Human Rights Commission voted in August that James Nichols of Biddeford was discriminated against when he was discharged from Richmond Eldercare Coalition housing instead of provided an accommodation to his disability.

According to the newspaper report, Nichols, who has PTSD and other disabilities and is a recovering alcoholic

was moved involuntarily to a different room at the home after living there a month, and the change triggered his post-traumatic stress disorder since the new roommate could drink alcohol and kept open containers of urine in the room. 

The report says Nichols told Gibbs the new living situation was “going badly” and he later told others he felt unsafe.

After a hospitalization, Nichols needed to be in a different room or with a different roommate. Other residents were not asked if they were willing to room with him. Instead, Nichols returned to the hospital for several weeks.

Smithfield, Oct 24, Therapeutic Horsemanship Exhibit for Veterans

by Sharon Wachsler

Today I came across a story in CentralMaine.com that I think is an exciting opportunity for veterans or anyone with a disability or chronic health condition in the Farmington area who enjoys animals, especially horses. The article is entitled, Maine AgrAbility to sponsor therapeutic-horsemanship demonstration for veterans Oct. 24. Having benefited from horse-assisted therapy, myself, I am excited to pass along this posting and hope those who read it will share it.

The AgrAbility Project is a national organization sponsored by the USDA that, according to its website, seeks to

enhance quality of life for farmers, ranchers, and other agricultural workers with disabilities. While the term "disability" often brings to mind conditions such as spinal cord injuries and amputations, AgrAbility addresses not only these but also many other conditions, such as arthritis, back impairments, and behavioral health issues.

The demonstration will take place at Thistle Ridge Equestrian Centre, 1289 Village Road, Smithfield from 1 to 3 p.m. Friday, Oct. 24. The presenter for the demo is Charmaine Bouford, certified rehabilitation counselor for SpiritHorse Therapeutic Center and a registered therapeutic riding instructor.

The presentation is free to veterans. Non-veterans are asked to donate $20 in support of Thistle Ridge programs. For more information on the therapeutic horsemanship exhibition or to request a disability accommodation, contact Lani Carlson at UMaine Cooperative Extension at 207.944.1533 or 800.287.1471.

UMaine Cooperative Extension partners with Maine AgrAbility to work with farmers, farm workers and farm family members with a chronic health condition or disability.

Disability Rights Center facing criticism for not protecting abused Riverview patient

Riverview Psychiatric Center is in the news again. This time the woman assaulted there was a patient, not a staffer.

An October 8, Portland Press Herald story blames Maine's Disability Rights Center for not taking faster and more decisive action when a Riverview patient was abused by staff:

The Disability Rights Center’s failure to immediately notify Adult Protective Services let down the abuse victim, critics said. 

“To just not report it because they could not urge others to do so is unacceptable,” said Rep. Richard Farnsworth, D-Portland, chair of the Legislature’s Health and Human Services Committee. “This report should have been made within 48 hours.” 

On Dec. 2, a corrections officer pepper-sprayed a nude patient who was in her room and not threatening employees, and then restrained her for hours afterward. The incident was kept secret until a former Riverview nurse reported the abuse to Adult Protective Services in late February. The state immediately investigated and concluded that abuse had occurred. One Riverview employee was fired as a result of the incident, and a contract worker was no longer allowed on Riverview grounds.

The article quotes Helen Bailey, a lawyer at DRC, saying they were working to try to get the hospital to take action on the patient's behalf so that hospital administrators would learn better how to handle such issues. 

Bailey said it is counterproductive for her group to report abuse when it is the hospital’s legal duty to do so. 

“If we do it for (Riverview), then they don’t learn how to do it themselves,” Bailey said. “They don’t get the point that these events are abuse if we do it for them.”

Read the complete article:  Patient advocacy group slow to report abuse case at Maine’s Riverview Hospital

Texas Governor's Race Pits One Wheelchair Image Against Another

Wendy Davis is the Democrat running for governor of Texas. She's a nondisabled woman running against Attorney General Greg Abbott, a Republican man who uses a wheelchair. This race has been chock full of politics-as-usual and politics-as-unusual where both candidates are trying to figure out how best to use or ignore Abbott's physical disability.

Bloomberg Politics posted an article today entitled, "Everybody Hates the New Wendy Davis Ad. That doesn't mean it's a failure." It includes the ad as well as ads from the Abbott camp that focus on his disability.

Abbott has put his disability front and center in several of his ads during this race.

Davis at first tried to avoid mention of Abbott's disability, especially when lambasted for using the campaign slogan, "Stand with Wendy." Now Davis is making use Abbott's disability to point out that just because he understands what it's like to be victimized due to disability and circumstance does not necessarily mean he supports others in this situation.

There are a slew of articles on this topic! If you just can't enough of it, here are a few links:

Washington Times: Wendy Davis Defends Greg Abbott 'Wheelchair Ad'

Time Magazine: Wendy Davis Wins the Prize for Most Ill-Advised Political Ad of 2014

Fox News: Wendy Davis defends 'wheelchair' ad criticizing paralyzed opponent

The Fox article includes information about what Davis said in the face of this criticism:

The Democratic nominee, who was flanked by disability rights activists -- including two people in wheelchairs -- at a Fort Worth news conference, claimed the ad was designed to portray Abbott as someone who worked against the disabled. 

Asked by a reporter if the ad exploits Abbott’s disability, Davis said, “This ad is about one thing. And one thing only. It’s about Greg Abbott’s hypocrisy.”

View Davis's ad, as well as Abbott's ads that feature his disability, in the Bloomberg article.

High Rates of Disability Among Recent Veterans

An article entitled, "Government disability payments skyrocketing despite fewer veterans" appeared in the Washington Times in August.

Representative Michael Michaud, a Maine Democrat candidate for governor and ranking member of the House Veterans' Affairs Committed, was mentioned in the article. The article indicated Michaud "requested the CBO report to examine how to minimize the skyrocketing costs of disability payments, according to a committee staffer."

Veterans from recent wars have higher rates of disabilities than previous wars' disabled veterans. Reasons for high rates of disabilities among veterans include multiple deployments, high rates of mental illness, the older age of reservists called to active duty, and injuries from environmental dangers, such as burn pits.

Back in the Maine Stream: Taking Disabled Vets Fishing

Are you a disabled veteran in Maine who likes fishing? You have company!

In July, the Portland Press Herald ran an interview with Marc Bilodeau and Bob Pelletier, the leaders of Back in the Maine Stream, an outdoor support group for disabled veterans. Bilodeau and Pelletier are themselves disabled veterans who like to fish. The group provides peer support to veterans who have returned home to Maine:

Both men love to fish. This year alone, they have organized 12 donated fishing trips to their group of Maine veterans, which now numbers 50. The group’s mission statement promises they will “improve the participant’s physical, social and emotional well being through fishing activities and outings. We believe veterans helping veterans improves all of our abilities, physical and emotional.”

Studies show that any time outdoors improves mental health. The comments of the vets leading this initiative seem to show that this is the case with their fishing expeditions, too:

What’s most striking about the work you do with other disabled veterans?

MARC: It’s interesting the difference you see on these fishing trips. People come in and you see their attitude change. They will come in grumpy and leave happy. Something happens. 

BOB: You’ve got guys with Post Traumatic Stress Syndrome, with brain injuries, guys who are visually impaired. We get them fishing and none of that pertains.
We had one gal join us, I won’t use her name. She is one tough cookie. No one goes near her. She came up to me after one trip and said, ‘Get your camera ready.’ Then she came up and gave me a hug.

Back in the Maine Stream has a website with pictures of trips, upcoming activities, and other resources of interest to disabled veterans in Maine.