News, Views, and Information about Disability

Disability News, Views, Information, and Literature

Wednesday, April 30, 2014

New edition of Breath & Shadow online! Poetry, fiction, essays!

Below is the post that went out to Breath & Shadow subscribers from Chris Kuell, editor of Breath & Shadow, the literary journal of Ability Maine. If you, too, would like to subscribe (for free!), please drop us a line at

Breath and Shadow
Volume 11, Number 2
Spring 2014

April is National Poetry Month, and in this issue we feature excellent pieces from Abigail Astor, Allegra Keys, Lori-Ann Tessier and Bruce Ario. There is also compelling fiction by Raymond Luczak, Susan M. Silver and Day Al-Mohamed. Essays by Michael Lockwood and Patti Rutka round out this exciting issue. So go hug a poet, and happy reading.

As part of a new initiative, poets are invited to submit audio/video clips of their performance pieces (in addition to the text) if they wish. It's not mandatory, but we hope that adding this new dimension will help open up the world of poetry to more of our readers. Visit our guidelines page for details. Our editors hope you enjoy this issue of Breath and Shadow. Please recommend us to your friends and let us know what you think.

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Twitter: @abilitymaine

To read our Spring (or past issues) please visit:

Breath and Shadow Staff:

Chris Kuell, Editor in Chief

Assistant Editors: Abby Astor, Dorothy Baker, Anne Chiapetta, Linda Cronin, Tricia Owsley and Suzanne Westhaver

Breath & Shadow is a collaborative effort of AbilityMaine, Resourcesfor Organizing and Social Change (ROSC), and our many valuable readers and contributors. Please consider donating to Breath and Shadow. We need your support to achieve our mission, and your gift is tax deductible. You can learn more by visiting:

Sunday, April 27, 2014

Editorial urges Maine doctors to provide interpreters for Deaf patients

White hands on a black background making the ASL sign for "interpreter."

The April 3, "Maine Voices" editorial in the Portland Press Herald, "Deaf Mainers shortchanged when health professionals don't provide interpreters," gives the case for hiring qualified American Sign Language (ASL) interpreters for Deaf Mainers. This is a thorough, articulate, and important piece for all health-care professionals in Maine (and elsewhere) to read and understand.

Meryl Troop of the Maine Center for Deafness and Kim Moody of the Disability Rights Center of Maine start by describing the arguments and excuses a wide variety of health care providers in Maine use to explain why they do not provide interpreters for patients who request them. The most common reason seems to be that health providers are accustomed to "writing back and forth" with hearing-impaired patients and believe that, since they believe this works well for some or many patients, it should be good enough for all. Troop and Moody explain why this is not the case:

Deaf people who use American Sign Language to communicate ... just want to understand their health care, their vision changes, why their glasses aren’t quite right, why their child needs a specific procedure and what they’ll have to do to provide home care for their partners, spouses and children. Just like people who can hear. They request an interpreter because they know that will be the best communication accommodation that works for them....
“You can’t say working through an interpreter orally is as effective as one-to-one written communication.”
Actually, we can ... Fewer than 1 percent of Maine’s population have been Deaf from early childhood, before they learned to understand and speak a language, and they may never have learned to read and write well enough to carry on a complex conversation about health care and medical issues....
In any event, do health care providers have the time to write out, in the same level of detail, what they say on a routine basis to patients who can hear and speak English? Is their handwriting legible when writing under the time constraints of today’s shortened appointments?
This article does a great job of explaining that -- even though over forty years have passed since most health care settings were mandated to provide equal access -- many health providers still don't realize that access is not a cookie cutter situation. In the cases Moody and Troop are discussing, this means that what works to communicate with a late-deafened person whose native language is English may not necessarily be what works best for a prelingually Deaf person whose native language is ASL.

The article also references recent legal cases in Maine where judgments have consistently gone to the Deaf patient's right for communication access in medical settings. The legal and ethical burden is on the health care professional to provide real, two-way communication access, which is best determined by who needs the access. Patients' rights and Deaf or disability rights are may be the same thing when the patient is Deaf or disabled!

Read the complete article.

Thursday, April 24, 2014

Reframe Maine's debate on Medicaid "versus" funding the developmental disabilities services waiting list

by Sharon Wachsler

During the months of February and March, I kept seeing articles and editorials in Maine newspapers about whether to expand Medicaid to Mainers who are uninsured OR whether to provide the necessary funding to adults with developmental disabilities who have been waiting for services for much too long.

I kept thinking, "This is a really screwy way to frame this question! Why is it that those who are writing about and discussing these topics are putting these two issues together as diametric opposites? Why is this discussion being framed this way -- as if the pie MUST be sliced so as to either leave out uninsured Mainers from receiving Medicaid or letting Maine PWDs continue to languish on the waiting list? Surely there are other options for funding that don't involve shafting either disabled or low-income Mainers (as if those two groups are separate)."

I have some theories as to why the debate was being framed this way (and that it was a debate at all), and who was benefitting from packaging the issues in this bizarre binary, but nevermind that! Nancy Cronin, the executive director of the Maine Developmental Disabilities Council, has written a terrific editorial that really gets to the heart of the matter in a sensible and articulate way.

In the March 20 "Maine Compass" feature of the Kennebec Journal, Cronin's op-ed, "Expand Medicare [sic] or fund waiting list? Question compares apples to oranges," addresses the question head-on. (Note: Although someone at the Journal gave the piece a title that says "Medicare," the expansion under debate was Medicaid, not Medicare.) Here's how the piece starts:
Should Maine expand Medicaid or fund the waiting list? That seems to be the question.  It is a strange question, however, from the point of view of the Maine Developmental Disabilities Council. It’s like asking if insurance should provide coverage for dialysis or for heart valve replacements. It’s not an either/or question and, frankly, pitting one vulnerable population against another one is not helpful or productive for any of those involved.
Cronin outlines the basics about how the waiting list came about and what the real questions are for moving forward, focusing always on the issue of sustainability.
The question, therefore, becomes: How do we obtain enough money to serve everybody who is eligible and in need of the service?
Are the conversations happening in the State House regarding the expansion of MaineCare yielding a sustainable answer? Unfortunately, no.
If only there were simple answers. In order to adequately serve people with developmental disabilities in Maine, we need to analyze our system of services to find methods that would serve more people at lower cost. This is easier said than done, of course. Those receiving services today might be afraid of how changes would affect their future and security, and those delivering services might fear for the security of their jobs. It is easier and more comfortable to stay within the current system, but it is not more sustainable.
Hop over to the online edition of the Kennebec Journal and read Cronin's essay!

Call for Entries: Disabled Slam Poets & Visual Artists!

As part of a celebration of the twenty-fourth anniversary of the Americans with Disabilities Act (ADA), the New England ADA Center is hosting a poetry slam and art exhibition at the Institute for Human Centered Design in Boston in July of this year. The deadline for both poetry and visual art submissions is May 15, 2014.

Click here for more information on the call for poetry and how to submit your poems for the poetry slam.

Click here for more information on the call for art and how to submit your artwork for the exhibit.