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- The College Admissions Scandal: When “Disability” is an “Elite” status
Recently, society was shocked by a scandal involving its richest and most elite. It was exposed that the tools meant to aid victims of systemic oppression were being abused to benefit children of affluent families in their admittance to prestigious colleges. People went as far as photoshopping photos and faking athletic ability to get onto university teams to bolster their applications. Sadly, much of the media’s fixation on the scandal surrounds the involvement of famous individuals such as actresses and designers. Little of the media’s discourse attempts to explain the issues of legally-mandated accommodations for disabled students. While these lackluster laws were created in hope in an effort to provide an equal playing field for all students, they often just create the illusion of equality. This frequently makes things worse by suppressing the opinions of those experiencing inequalities and by undermining potentially successful solutions for the roots of the issues. The reality is that the tests needed for admissions to most schools in the US are administered by The College Board. The College Board, based in New Jersey, is a corporation with a complete monopoly on everything related to college admissions. The College Board administers a variety of tests for a broad range of subjects, and a student may end up taking over a dozen tests before an admission application is even looked at. A multi-million dollar test preparation industry has flourished as college admissions have become increasingly competitive. Since the introduction of the “common application” by the College Board, students are applying to significantly more schools than ever before, some to the point of dozens. Studies have revealed that some preparation programs can massively increase total testing points, making the “equal playing field” aspect of testing questionable at best. High scores on the AP exam yield many benefits, including but not limited to college credit and preferential treatment. The College Board also covers testing for Graduate and Law and other professional schools after the Undergraduate years. In the State of Maine, The SAT (Scholastic Aptitude Test) is given to all students in Junior Year of High School as an assessment test. Colleges often use SAT scores as a determining factor in offering scholarships or other opportunities, such as admissions to Honors Programs, where students are offered classes and independent study opportunities reserved “for the smartest people in your class.” As a student with a Disability, I have an unique perspective: I took the SAT twice, once untimed, once timed. I’m not exactly sure how the College Board currently administers the accommodations for the SAT, but when I took it, the untimed option was only offered twice a year, which did not leave me any real choice but to take it untimed the second time I was administered the test. Bizarrely enough, I scored higher on the timed administration, by such a significant amount that I wonder if I wasted my efforts in getting the documentation and the forms for taking the test untimed. I count myself lucky- I got a good enough education to get into the college that I wanted, and I received an excellent education where I went. The fact that the rich bought their way in via bribes multiple times the tuition costs just demonstrates the class inequality of college admissions. This doesn’t even begin to consider other factors such as legacy admissions and the unique problems faced by those at the intersections of race, gender, sexuality, and so on. Consider this on top of the mounting difficulties of transitioning to a post-secondary education world, and we can begin to see a fraction of the ways in which the not-rich are disadvantaged time and time again throughout their education. I propose a radical change that may benefit everyone: Simply make the tests for undergraduate admissions all untimed. Students with Disabilities are usually limited to the dates that accommodations are given, but this would do away with that obstacle as well as close up one possible way an unscrupulous person could “game the system." It would not eliminate the inequality in society, but given that a significant percentage of mental health issues and learning disabilities are not identified until adulthood, it seems only logical. Unfortunately, The College Board is not concerned with logic. With a monopoly on the tests that determine college admissions, why would they admit anything was or is wrong? Whether or not you agree with it, the SAT is far too important for the College Board (and the colleges who use their tests) to easily shift its use. In 2006, The College Board added a written section, but has removed it from its current tests since it became clear that the scores could be manipulated via specific word usage and certain grammatical techniques. The College Board and the tests they administer may not be directly implicated by anyone in the scandal based in California, and maybe that’s a decent thing. While it is frustrating beyond words to read about a professional test taker knowing the test well enough to be able to “score on demand”, at least there is some hope that he was taking the same test as any other college-aspiring student. The privilege and power that come with being in the top one percent still don’t guarantee success on the College Board Tests. Maybe the disability accommodations serve as a plot device, or a sad plot twist. Either way, it is difficult to see how anyone actually wins currently, and it’s clear that the biggest losers are the disabled and poor. #MikeReynolds #collegeadmissionsscandal #TheCollegeBoard
- Breath & Shadow Spring 2019 Issue is Here!
Issue 2 of Volume 16 is now available to read here! This issue features: -"Snowing in Spring" by Changming Yuan -"Through A Glass Darkly" by Glynis Scrivens -"Dear God" by Shawna Borman -"The Hidden Circus" by A.K.F.N. Myers -"Chronicle" by Judith Skillman -"In the Sunrise of the Purple City" by Laura Campbell -"Bin Bag Human" by M. Loraine Nunnally -"Smoked" by Marcus Vance -"It Is" by Emily Harriett -"My Wildest Dreams" by Laura Becker Unfortunately, we have nothing New on the Bookshelf! #BreathShadow #AbilityMaine #ChangmingYuan #GlynisScrivens #ShawnaBorman #AKFNMyers #JudithSkillman #LauraCampbell #MLoraineNunnally #MarcusVance #EmilyHarriett #LauraBecker #NewontheBookshelf
- Developments in the Assisted Suicide Referendum
In late November, I penned an op-ed calling for the rejection of an assisted suicide ballot measure that would have created a referendum similar to the law in Oregon. My piece ran in several papers throughout Maine on November 29th and 30th. On December 3, The Seacoast Online ran a story where advocates for assisted suicide were celebrating claiming to have received over 45,000 total signatures, up from 6,000 published in article from late October. The article incorrectly stated that Sen. Roger Katz would be sponsoring a bill in the 2019 legislature. Katz was termed out as a Senator earlier in 2018, and Bruce Poilhot was elected to Katz’s former district. The article additionally stated that the advocates would be focusing on the upcoming legislative session, and if that was unsuccessful, that they would continue gathering signatures for a 2020 referendum. Maine citizen-initiated referendum laws are some of the most restrictive laws in the state. Groups are frequently interested in getting a referendum on the ballot because it is often seen as a way to bypass the legislative process and send the vote directly to the people. Large sums of money are spent in order to obtain the number of signatures to be placed on the ballot, and in recent years that has often meant over a million dollars spent without qualifying for a referendum question, such as in the case of the referendum for the York County casino. With the advocates of assisted suicide and advocates of universal home-based care for the elderly having filed their referendum on the same day, and with the home-based question having already failed when put before voters, what was going on? In early December, I left a message with the Elections Division regarding the specifics of the assisted suicide referendum. I received a detailed call back from the Commissioner of Elections. While it was correct the both groups filed on the same day, they had begun gathering on different days, with Maine’s Death with Dignity referendum initially certified to start signature hunting on April 19th, which coincided with their press conference. The revised date was set for May 2018 due to an internal error at the Elections office regarding the petition wording, which gives the advocates until early November 2019 to collect the necessary signatures for putting the referendum back on the ballot. It should be noted that, according to public filings, the overwhelming majority of Maine’s Death with Dignity funding is coming from out of state, specifically the Death with Dignity Nation Center. The documents also detail an arrangement of $90,000 for 20,000 signatures from a Massachusetts firm, though it was never fulfilled nor paid. The hearing for the assisted suicide referendum has been scheduled for 4/10. #assistedsuicidereferendum #assistedsuicide #DeathWithDignity #MikeReynolds
- Remembering Carrie Lucas
In late February, the Disability Community lost a pioneering advocate, outspoken activist, and beloved leader when Carrie Lucas passed away at the age of 47. Lucas, who had a neuromuscular disease that robbed her of most of her movement, was an unstoppable pioneer for the rights of parents with disabilities as well as for the creation of accessible environments. She was also an avid photographer and mother to four adopted children. After being told she would not be able to parent “due to her disability,” it became her quest to raise her own family. She generated enough money to attend law school, became an attorney, and would eventually join a nonprofit that advocated for the rights of parents with disabilities. During the 2017 legislative fight over the ACA, she was arrested for protesting in Cory Gardner’s office, which was broadcast live to 12,000 viewers on Facebook. Law enforcement had no means of caring for a person who uses a ventilator and ended up having to bring her to a hospital. She has also testified twice against death-with-dignity bills. Carrie was also an incredible friend and mentor to many, including myself. As one of the fiercest members of the Disability Rights movement, it was often comforting to receive a personal email or text from her, asking about something that I wrote about online, usually a quiet affirmation of support, and often, exactly the thing I needed to hear. Carrie made you feel important; she would not just send one email, she would consistently provide feedback, she’d remember something you’d said and send you a quick text to remind you about it. She was an absolute joy to have as a friend. I was especially lucky because we shared the same birthday, though she was two years older. Once, when we both realized we’d each seen the Indigo Girls several dozen times, we chalked it up to being a “Scorpio” thing. Carrie deserved much better of her last year of life. She was the woman who could out-advocate anyone, but that couldn’t save her from a broken healthcare system. Insurance companies denied her a much needed $2,000 antibiotic to fight an infection, and her health spiraled out of control. That denial robbed Carrie of her verbal abilities and forced her to use Assistive Technology to communicate until her passing. Many believe this decision by the insurance companies to be responsible for her death. If you can, please take a moment to read Carrie’s brilliant obituary from the New York Times. The Disability Community will truly never forget Carrie and her efforts. I know I surely won't. #MikeReynolds #CarrieLucas #CoryGardner #DeathWithDignity
- Breath & Shadow Winter 2019 Issue is Here!
Issue 1 of Volume 16 is now available to read here! This issue features: -"Some Thoughts on Trigger Warnings" by Chris Kuell -"In Sorrow Brought Forth" and "A Childhood" by Rebecca Cross -"Living, As They Do, At the Bottom of The Sea" by Adam Fout -"Ride with The Heroes" by Kenna Mary McKinnon -"Deep the Rain Falls" by Elizabeth Devine -"Glass" by Arriane Tolentino -"On the Life of Drones" by Nancy Fagan -"Vajas Kenyer" and "With" by Sarah Varnam -"Waves" by Nessma A. Elssawy -"Able-Bodied Pieces of Shit" by Molly Adamson -"November Rosebud" and "The Unending Sting" by Roy Wahlberg -"What’s Criminal" by Briana McGuckin #BreathShadow #AbilityMaine #JimPennington #AJCunder #ChristineLucas #RobinMEarnes #DarlaNagel #LauraIngram #NicholeVBrazelton #CatherineMurphy #ElizabethDevine #HaleighDiann #StephanieDeHaven #EmilyDorffer #DavidKopaskaMerkel #ChrisKuell
- Weintraub and the Disability Resistance to Brett Kavanaugh
Content Warnings: Ableism in Politics, Mention of Sexual Assault When Supreme Court Justice Anthony Kennedy retired earlier this year many people feared that the Court, upon the appointment of a judge by President Trump, would be positioned to be more conservative than it has been in generations. Those fears were largely confirmed when Donald Trump announced Brett Kavanaugh as his nominee for Supreme Court. Kavanaugh previously worked in the DC Federal Circuit court with former Obama Supreme Court nominee Merrick Garland serving as his boss. Kavanaugh graduated from Yale and was known as a staunch conservative and member of the Federalist Society, a group which promotes conservative thinking in legal settings. Kavanaugh has written several troubling opinions that would concern the Disability community, but nothing compares to his decision in the case of Doe Tarlow vs. District of Columbia. The case, which was brought originally in 2003, sought to compel the District to use what is referred to as the “known wishes” standard versus what was then the standard, a “best interest” standard that the District should use when deciding what surgeries an intellectually disabled adult should have. The “known wishes” standard would try to explain the surgery in language that an intellectually disabled adult could understand so their wishes and desires would be taken into account. The “best interest” standard in this case only meant that two doctors would have to agree that the surgery was in the best interest of the intellectually disabled adult, and would not be compelled to even discuss the surgery with the intellectually disabled adult who was going to undergo the procedure. The DC court initially ruled that the “known wishes” standard was most appropriate. During the case’s 2007 appeal, Kavanaugh made the argument that the “best interest” standard was sufficient for the legal rights of intellectually disabled adults. Many groups have come out against the nomination of Brett Kavanaugh, including but not limited to the American Association of Disabled People (AADP), The Bazelton Center for Mental Health, The Arc, The Association of University Centers on Disability (AUCD), The National Council on Independent Living (NCIL), and the Disability Rights and Education Defense Fund (DREDF). It’s clear to see why. It’s dehumanizing and unfair for Kavanaugh to have made a legal case that an adult who may not be competent to make a medical decision shouldn’t even have wishes about their care followed. Why are intellectually disabled folks being treated so unequally? The Disability Community was not satisfied to only protest the nomination of Brett Kavanaugh. They were going to be a part of this conflict. History was once again made on September 7th when Elizabeth Weintraub, a Senior Advocacy Specialist at AUCD who lives with cerebral palsy and also served in a recent Senate Fellowship, became the first intellectually disabled person to speak at a Supreme Court Nomination. She spoke for nearly six minutes before her articulate opposition to the Kavanaugh nomination ended because the the nominee was (supposedly) done answering questions. C-SPAN broadcast her speech, and while some mention of her was heard, it was not much more than a murmur. Unfortunately, her careful words were soon drowned out by the other negative coverage of Kavanaugh. When Judge Kavanaugh addressed his confirmation hearings, it became clear that the vote to confirm or deny him a lifetime appointment could lie squarely with Maine’s Senator Susan Collins, a moderate pro-choice Republican who has voted in the past to oppose the dismantling of the Affordable Care Act. While Collins was weighing her options before making a decision, the citizens of Maine made it increasingly clear that they were willing to crowdsource a candidate to run against her and had already raised over a million dollars. It was then that Collins’ staff, who were fielding a constant barrage of phone calls, reported that the messages were turning into threats of violence. Soon after, Dr. Christine Ford came out with sexual assault allegations against Kavanaugh. While Senator Collins was tweeting about the need for Dr. Ford to be heard by the Judiciary Committee, I noticed on Facebook that Andy Imparato, Executive Director of AUCD, had shared an op-ed opposing the nomination of Kavanaugh. It had been written by Tom Harkin, a retired former Senator and disability rights advocate considered to be the father of the ADA. His op-ed was fantastic, but it wasn’t until I’d finished it that I realized it had been published in my hometown paper from Lewiston, Maine. Upon contact, representatives from both the Lewiston Sun-Journal and the American University Centers on Disability explained that the letter was submitted to several state media outlets, but that the Sun-Journal was the first to accept and publish the piece. The Sun-Journal has an exclusive first run clause with any opinion piece they accept for publication, which means that the work cannot be published elsewhere. While it was a heartening moment to see such a strong and effective piece in my hometown paper, the nomination of Brett Kavanaugh would become far more about the many other allegations against him rather than his unacceptable opinions about the rights of those living with disabilities. Ultimately, Senator Collins did not listen to the wishes of her constituents. After some very intense partisan fighting and a lengthy nomination process, it seems that the elite power class will always support the elite power class, regardless of if it means alienating a large percentage of your constituent base. The Disability Community has been let down by Senator Collins and her lack of regard for our wellbeing, and we’re far from the only people impacted negatively by her horrendous vote in support of Kavanaugh. One can only hope her decision and the decisions of others would have changed against him had more voices like Elizabeth Weintraub been given a platform to be heard. ### Author’s Note: This story was conceived and almost completely drafted before the world knew who Dr. Ford was, and I’ve been struggling to address Dr. Ford’s allegations while maintaining focus on Kavanaugh’s opinions of the Disability Community. Dr. Ford’s testimony was incredibly riveting and she should be celebrated for her bravery, but she is instead reportedly living in her fourth safehouse out of fear for her and her family’s safety, and the many issues brought up in his confirmation hearings have largely seemed to disappear since Kavanaugh’s confirmation. I strongly encourage you to read further about the Supreme Court nomination of Brett Kavanaugh and stay informed on the developments surrounding him. #MikeReynolds #brettkavanaugh #supremejusticebrettkavanaugh #disabilityrightsmaine #knownwishesstandard #bestintereststandard
- Don’t Sign Petition To Put Flawed Assisted Suicide Law On State Ballot
Based on what happened after Oregon legalized the practice, it's incompatible with values held by Mainers. Maine residents are being asked to sign a petition calling for a referendum on legalizing assisted suicide to be placed on the 2019 ballot. The practice was legalized in Oregon in 1997. Since then, there have been far more problematic issues and unanswered questions than any assisted-suicide proponent claims. The Maine Legislature has voted down a number of attempts to legalize assisted suicide over the past two decades. The Health and Human Services Committee has never supported any version of this proposal, and an assisted-suicide measure has never passed the Legislature. In fact, the last time such a bill went to a floor vote, in 2017, it failed the House by 61 to 85, a larger margin than in recent history. The proponents of this law can’t pass this it in the Legislature, so now they are trying to get it through a statewide referendum. The problem is that the proponents have short memories: In 2000, Maine voters soundly rejected a referendum that mirrored Oregon’s law. Mainers have decided time and again against assisted suicide, and we don’t need another referendum funded primarily by out-of-state interests. If asked to sign a petition for the referendum, say “no,” and be firm. Assisted-suicide laws are the most blatant forms of discrimination based on disability in our society today. Does it make sense to tell a person who is battling cancer to consider suicide? Should we not be doing everything we can to support these people in having the best possible health care and home care so they have quality of life for however long they have? With the experience of the laws in Oregon as a guide, the question of assisted suicide becomes, quite frankly, incompatible with Maine values. Oregon’s doctors have written suicide prescriptions for individuals whose medical basis for eligibility for assisted suicide was listed as diabetes. In Oregon, and in the referendum language, a person is terminally ill if he or she has a condition that could be reasonably considered terminal only if the patient refuses needed medication. By that definition, people could qualify as “terminal” who have epilepsy, ongoing infections and other illnesses that can be managed with medication. This petition is not limited in scope and is actually far more dangerous than the proponents want to admit. While much of our state is relatively close to adequate hospice and palliative care, there are huge gaps in northern and eastern Maine when it comes to these services. Before considering a public policy of assisted suicide, Maine must solve the vast disparity of access to hospice services and palliative care. It is not time to even consider a flawed law such as the one this referendum is proposing. Please, decline to sign. In Oregon, the rate of suicide is 33 percent above the national average, and the rate of teen suicide is soaring. There is a clear problem of suicide contagion. While the proponents claim there are safeguards, there is absolutely no oversight once the pills are prescribed. Under the Oregon law, a friend or relative – even an heir – can “encourage” an elder to make the request, sign the forms as a witness, pick up the prescription and even administer the drug (with or without consent) because no objective witness is required at death, so who would know? The method of dying that the referendum is trying to legalize involves taking 100 pills of a barbiturate, emptying the contents of each pill into a sweet solution, then drinking the solution. It can take up to 104 hours for people to die from the solution, and in seven Oregon cases, the person who took the solution woke up. This is not “death with dignity” – it’s a desperate effort to further a dangerous law and give it mainstream credibility, with no regard for the harm it causes, and it even gives full legal immunity to any medical personnel or other person who assists in the suicide. The only real protections in the law are for people other than the patient, foreclosing any realistic potential for investigation of foul play. For all of the reasons above, please decline to sign. This opinion piece previously ran in the Press Herald on 11/29/18 and in the Morning Sentinel and Kennebec Journal on 11/30/18.
- Breath & Shadow Fall 2018 Issue is Here!
Issue 4 of Volume 15 is now available to read here! This issue features: -"Understanding Passion and Passionate Understanding: A Book Review" by Denise Noe -"Priorities" by Edward Turner -"The Artist’s Domain" by John Kaniecki -"Bartering for Health" by Wendy Kennar -"A Rock And A Hard Place" by Brian Koukol -"Lost Hope" and "Museum of Distractions" by Wesley Sims -"Invisible, Visual" by Mercedes Zapata -"Ask the Moon" by Susan M. Silver -"Kryptonite" by Ocean -"The Unraveling" by Allison Guitard -"Threads of Ugliness" by Hilary Boyer -"Your Father, The Writer: An Exercise in Deus Ex Machina" by Bob Thurber -"Starbreaker" by Lee Todd Lacks New on the Bookshelf: -"A Certain Loneliness" by Sandra Gail Lambert -"A Journey to Glory" by Mark Cornell -"Julia and the Moonbirds" by Mark Cornell #BreathShadow #AbilityMaine #JimPennington #AJCunder #ChristineLucas #RobinMEarnes #DarlaNagel #ElizabethBingham #LauraIngram #NicholeVBrazelton #CatherineMurphy #ElizabethDevine #HaleighDiann #StephanieDeHaven #EmilyDorffer #DavidKopaskaMerkel #ChrisKuell
- Navigating the Common Ground Fair with a Physical Disability
For several decades, The Common Ground Fair has been a quirky part of the autumn fair season in Maine. Billed as the largest organic fair in North America, the Common Ground Fair is a top-tier event that has a literal plethora of events, keynotes, political and historical talks as well as a number of organic farming specific lectures. The Maine Organic Farmers and Gardeners Association, the trade group that produces the fair yearly, states that about 60,000 people attend the fair in Unity. The fair happens yearly on the third weekend after Labor Day. While the Common Ground Fair is about the same size physically as other agricultural fairs in Maine, most notably (in my own mind) as the Fryeburg Fair, which is the final fair of the fall Season and has a similar number of crowds during the weekend days of the fair. The Common Ground Fair offers a ton of awesome exhibits, food, social and political organizing and more. However, the fair is a rather large area, with many thousands of people making it sometimes quite difficult to get around in a timely manner. I would strongly suggest that anyone, especially someone with a physical disability spend some time on the fair website (www.mofga.org) trying to figure out what you want to accomplish/see/attend before going to the fair. Realize that the restrooms often have lines, or may be inaccessible. Realize that regardless of your physical ability, a trip to the fair, especially if you are mobility impaired, will be significantly physically draining. Additionally, there are some perks to the fair that make it well worth attending. People with physical disabilities are given free admission to the fair; normal ticketing is $15/day if the tickets are bought at the Gate, however there is a link to buy tickets in advance either through the MOFGA website or the large number of businesses selling them in advance for $10. The benefit is you avoid the lengthy lines to get into the fair, and given how long the drive to the fair can be; anything one can do to streamline the process, especially if one is disabled will only save much needed energy (and sanity) later. Remember the fair is a fall weekend in Maine, the weather can go from very hot in the 70’s to rain and in the low 50’s in the same day. While the fair may be in Unity, the travels times may be far longer due to the amount of traffic. Plan to be on a flexible schedule, and honestly, it never hurts to have an extra pair of clothes, dose of medication, medical supplies, snacks (The food at the fair is incredible, but it is pricy) and I would highly suggest a pair of gloves if using any sort of mobility device. The Common Ground Fair has some serious issues with access, especially if you are using a wheelchair. In recent years, paths at the fairgrounds have been paved, but much of the fair, especially the Social and Political Tents are on top of long matted grass, and it is not easy to navigate or maneuver with any wheeled vehicle - from a baby stroller to a wheelchair. The restroom I would frankly guide people who have physical disabilities to use is the accessible restroom in the Exhibition Center near the Social and Political Action Tents. The restrooms are roomy enough to have care provided easily, the restroom is probably one of the cleanest areas of the Fair, and is useful if a person has to worry about infections or incontinence issues. For a fair that boast 60000 visitors, their map for the 2018 fair shows only 4 accessible restrooms, or only half of the facilities are accessible to people with disabilities at the fairgrounds. While this might seem like a harsh criticism of the Common Ground Fair, it isn’t. If anything, it is a plea from someone who really loves the fair but is genuinely concerned about the health, energy levels and overall well-being of not only myself, but the other thousands of people with disabilities who should be able to enjoy all of the unique and wonderful assets of the annual Common Ground Fair. #eventcoverage #commongroundfair #MikeReynolds
- Hundreds Celebrate Disability Pride Day in Augusta, Paintings of Maine Disability Rights Activists U
Several Hundred people braved very sunny skies and high temperatures to attend the annual “Disability Pride Day” at Capitol Park in Augusta on the afternoon of Friday, July 20th. The event was sponsored by Disability Rights Maine, a protection and advocacy center for individuals with disabilities. Disability Rights Maine is a member of the National Disability Rights Network, national collection of protection and advocacy centers. Disability Pride Days have been happening for a few years, but this is the first time I was able to make it in person. Historically, there have been celebrations of the signing of The Americans with Disabilities Act (2005) that were also held at Capitol Park. Disability Pride Days differed in the scope of their event. It was a day of “positive thoughts.” At least one of the honorees got a little divisive, but I’d be surprised if that didn’t happen. He was being honored for being an disability rights activist, and it goes with the territory. This Disability Pride Day featured the unveiling of three gorgeous paintings by Bill King, a woodworker and painter who has worked with Creative Work Systems. Disability Rights Maine commissioned the paintings in honor of Gil Broberg, Helen Bailey, and Kathy McInnis Misenor. These stunning pieces of art will continue to adorn the walls of Disability Rights Maine. One of the honorees said “the paintings belonged in the Maine State Museum,” and I can’t help but consider how marvelous it would be to have a museum installation of Maine’s Disability Rights History. *** On a very personal level, I have remarkable memories of the three honorees: Back in the eighties, when people primarily got their updates from network television news, Kathy McInnis was often featured presenting whatever disability rights stuff was occurring. My single mom and grandmother openly discussed the news with me, and I distinctly remember telling my mother that I wanted to do what Kathy McInnis did when I grew up. One of her programs listed her as an “Activist” for some form of the word “Disability.” I remember telling everyone I wanted to be a “Disability Activist” when I was older, because Kathy McInnis was so obviously awesome. Who doesn’t want to be that awesome when they grow up? I met her as an adult about a decade ago, and I tried really hard not to be the emotional guy gushing about how much I appreciate her. I remember it having been cool and drama-free. For decades, Helen Bailey has been right next to me fighting for disability rights and against assisted suicide. Even after retirement, Helen returned to testify against a recent bill. Bailey served as General Counsel for Disability Rights Maine, and her legal victories and tireless dedication have benefitted untold numbers of Maine residents. Disability Rights Maine has an annual advocacy award named in her honor. I first met Gil Broberg when I was finishing college and applying for work. A Southern Maine Insurance Company was considered one of the best companies to work for, and they were very good about recruiting people with disabilities. I spent an awful amount of time on my resume and submitted it to my campus career center. A few weeks later, Gil called, and after what I will admit was a “persistent” job searcher, I received a call for an interview (that lasted over eight hours), and I was somehow hired. While we worked together, Gil and I coordinated with Anna Kendrick’s mom to give a couple of panel discussions on disability to high school students. Gil has also served on numerous boards and advisory councils. He’s done more to progress the needs of all people with disabilities in Maine than I could possibly remember or list. I was delighted to see his reaction when the painting of him was unveiled. *** Disability Pride Day events also included many disability providers discussing the services and products they have to support people with disabilities across the State of Maine. It was an excellent event that celebrated the diversity of the the Disability Community, the long term achievements that grassroots disability community, and had some delicious free pizza provided by Pat’s Pizza. What more could a person want!? Huge props to Disability Rights Maine for such a memorable event. I hope there are many more to come. Kim Moody, Executive Director of Disability rights Maine in front of the Statehouse, at Capitol Park. Her left arm is amputated and she has long curly hair. A canvas painting of the Statue of Liberty in a wheelchair. Gil Broberg and Kathy McInnis-Misenor, along with her daughter, engrossed in conversation. The Disability Right Maine staff behind the Disability Pride Day sign. Helen Bailey, an older caucasian woman addresses the crowd when the painting of her is revealed. Kathy McInnis-Misenor, with dyed magenta hair, smiles while attending Disability Pride Day. The unveiling of the paintings of Gil Broberg, Kathy McInnis-Misenor, and Helen Bailey. Gil Broberg has a smile of delight upon seeing the painting of himself for the first time. Edited by Ivy Quigley. #MikeReynolds #AbilityMaine #disabilityrightsmaine #disabilityprideday #nationaldisabilityrightsnetwork #gilbroberg #helenbailey #kathymcinnismisenor #eventcoverage #americanswithdisabilitiesact #ADA
- How The Media Negates The Bipolar Experience
Content Warning: Suicidality, Self-Harm “Everyone’s a little bit bipolar!” As a person with Bipolar II, this remark irks me immensely. The way Bipolar Disorder is represented in the media grossly misinforms the general public. Either blown vastly out of proportion or reduced to a joke, these portrayals perpetually betray the actual experiences of individuals with Bipolar Disorder. Misinformation makes it harder for others and myself to navigate our disorders because we cannot receive the understanding and support we desperately require. We are constantly judged for our condition and treated with prejudice. The only way to be acknowledged for who we really are is to destigmatize the bipolar experience. Bipolar disorder is a biochemical disease, meaning people with bipolar disorder literally have a biologically different brain chemistry from those without the disease. Bipolar Disorder is often generalized about without distinguishing between the different types. Bipolar I and Bipolar II, the most common variants, are described by the National Institute for Mental Health as: “Bipolar I Disorder— defined by manic episodes that last at least 7 days, or by manic symptoms that are so severe that the person needs immediate hospital care. Usually, depressive episodes occur as well, typically lasting at least 2 weeks. Episodes of depression with mixed features (having depression and manic symptoms at the same time) are also possible. Bipolar II Disorder— defined by a pattern of depressive episodes and hypomanic episodes, but not the full-blown manic episodes described above.” Hypomania and mania often express as euphoria, high energy states, and delusions of grandeur, among other symptoms. Hypomania is often viewed as a less extreme version of mania. Typical treatments for Bipolar Disorder include psychotherapy, medication, and self-management strategies. When one thinks of bipolar depression, they may imagine someone with very low energy who can’t get out of bed. However, my depressive states often include mixed features, meaning I have symptoms of depression and hypomania. These states are very dangerous for me. One minute I can be desperately pacing back and forth muttering to myself about the agony I’m in, and the next minute I can have a pair of scissors pressed against my wrist. I try to be alone as little as possible during these states because not only am I suicidal, but I have the restless, impulsive energy to actually follow through with such acts. Mood states with mixed features (especially mixed depressive states) are not well known to the general public, but they are some of the most dangerous. The impulsivity of hypomanic/manic symptoms along with the suicidality of depressive symptoms increases the risk of attempting suicide by at least 50%. I am on medication and relatively stable, but I still have mild swings, which can manifest as excessive shopping, suicidal rants, and all-nighters. I will never be cured of my disorder, and despite being on medication, it is and always will be a significant part of my life. It is something I tell people about because I want to break down the stigma. “Look at me! I have bipolar disorder but I work and am a student and do all this cool stuff!” It is sad I feel I need to prove myself worthy because of my disorder. Feeling the need to be open about my illness yet resenting having to prove my self-worth is a stressful internal conflict. The harmful representations of Bipolar Disorder in the media don’t help. Inaccurate pop culture portrayals can make individuals with bipolar disorder confused about their experiences. They can also misinform family and friends of what their loved ones are experiencing. For example, there are many portrayals of individuals with Bipolar Disorder throwing their medication away and achieving a magical recovery. Although medication is not the only form of treatment, the frequency of this anti-medication portrayal has created a toxic belief that everyone can overcome bipolar disorder without medication. This can disturb the recovery of those that are genuinely benefiting from their medications, or might be if they were willing to give medication a chance. This all paints the bipolar experience as less serious than it is, and erases the danger and devastation that can come with these mood states. The stigma even warps our language, with outdated psychiatric terms like “maniac” being broadly used as a derogatory term for anyone experiencing mental illness. I’m tired of the constant dance of when to tell people about my disorder and when to keep it under wraps. The demonization and trivialization both serve to muddle the bipolar experience. They erase the fact that each bipolar person is an individual with their own differences-- different ways of experiencing bipolar disorder, different ways of coping with it, and different ways of treating it. We are individuals just like anyone else, and we don’t belong under one umbrella. Don’t let irrational fear resulting from stigma hold you back-- get to know us. We’re not raving maniacs, and we shouldn’t have to prove it to you. To learn more, read these collections of personal accounts from individuals with Bipolar Disorder: Time to Change and the Depression and Bipolar Support Alliance. Edited by Ivy Quigley. #AbilityMaine #Blog #EliezerMorse #BipolarDisorder
- Breath & Shadow 2016 Issues Remastered!
Check out all four remastered issues of Volume 13! Winter features: -"Lessons from the Gimp Ghetto" by Heidi Johnson-Wright -"After the ER Waiting Out a Storm in a Trailer" by Kitty Eppard -"Seeking the Seal" by Katy Wimhurst -"The Special Ed Teacher Collects Dead Mice" by Aleph Altman-Mills Seven -"Lessons I’m Learning from the Ocean" by Wendy Kennar -"Time Well Spent" by Emily Dorffer -"Set", "Uncover", and "Dead Fly" by Crimson Blackstone -"The River Voice" by Madeleine Parish -"Green Tongues" by Louie Crew Clay -"Romans Angry About the Inner World -And I Have Felt It" by Lynda McKinney Lambert Read Winter 2016 here! Spring features: -"Baptism" by Linda A. Cronin -"Mutability" and "New Mexico" by Mark A. Murphy -"Crushed" by Douglas Kolacki -"Mental Illness And The Positives of Labeling" by Denise Noe -"Neurodivergency" and "Mastectomy" by Jessica Goody -"A Memory of Flowers" by Sandra M. Odell -"Many Nights in ’76" by Lee Todd Lacks -"Cisalpine Gaul" by Mark Cornell -"The Raising of Lazarus" by Ada Hoffmann -"Fishhook" by Joanne Rixon -"Will I Remember" by Emily Hart -"Expanding and Contracting Worlds: A Review" by Chris Kuell Read Spring 2016 here! Summer features: -"The Loose Palace of Exile" by John Thomas Allen -"Schizophrenic Meadow" by Todd Hanks -"Helping Granpa Eat" by Edward M. Turner -"This Body, Inheritance" by Hayley Mitchell Haugen -"Distractions" by Diane Baumer -"Sonata" by Ana Garza G’z -"The Space Between" by Jane Ammon -"Companions" by Nina Fosati -"Three Tanka" by Sergio Ortiz -"One Of Those Days" by C. Borden -"Concierge" by Freedom Chevalier -"Blinded by Communism: A Review" by Chris Kuell Read Summer 2016 here! Fall features: -"The Girl", "After The Long Dry Spell", and "New Dress" by Rachael Z. Ikins -"Three Word Memoir" by Izabela Jeremus -"Before the Diagnosis", "t6", and "Love Letters Series Poem V" By Heather Ace Ratcliff -"Budding" by Michelle Zhuang -"At The Expense of Joy: Human Rights Violations Against Human Beings with Autism Via Applied -Behavioral Analysis" by Dr. Kelly Levinstein -"Grandma’s Closet" by Jennifer Gifford -"The Boy" by Edward M. Turner -"Black Kripple: Review and Interview" by Erika Jahneke -"Willowbrook" by Jessica Goody -"My Cup Runneth Over- Not" by Anakalia -"Time and Music" by Dorothy Baker Read Fall 2016 here! Keep an eye out for further updates as we continue upgrade our offerings <3 #BreathShadow #AbilityMaine #ChrisKuell #HeidiJohnsonWright #KittyEppard #KatyWimhurst #AlephAltmanMillsSeven #WendyKennar #EmilyDorffer #CrimsonBlackstone #MadeleineParish #LouieCrewClay #LyndaMcKinneyLambert #LindaACronin #MarkAMurphy #DouglasKolacki #DeniseN #DeniseNoe #JessicaGoody #SandraMOdell #LeeToddLacks #MarkCornell #AdaHoffmann #JoanneRixon #EmilyHart #JohnThomasAllen #ToddHanks #EdwardMTurner #HayleyMitchellHaugen #DianeBaumer #AnaGarzaGz #JaneAmmon #NinaFosati #SergioOrtiz #CBorden #FreedomChevalier #RachaelZIkins #IzabelaJeremus #HeatherAceRatcliff #MichelleZhuang #DrKellyLevinstein #JenniferGifford #ErikaJahneke #Anakalia #DorothyBaker