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NMD IN THE NEWS

January 05, 2018

How 30 Blocks Became 30 Years (NY Times)

It’s a relationship that, in many ways, has only become more mysterious to me as the years have passed. Early on, I took for granted the fact that I would find love. I was cocky that way. But over time I have wondered why and how my marriage has worked out. So when I landed a contract several years ago to write about love between people with disabilities and people without, I figured I would start with my own marriage.

December 26, 2017

A Medical Breakthrough That Can Do Everything – Except Make Me Better (HuffPost)

I share these facts with some real hesitation. For the non-disabled, hearing about the physical impact of my disease often stimulates a strange Pavlovian reaction, drawing on feelings of pity, tragedy, heroism and inspiration. But the fact that my muscles are not particularly useful is not pitiful nor tragic nor heroic nor inspirational. It is just life. There is certainly a spectrum of challenges that we humans face, but just because my challenges are always visible for the world to see does not mean they necessarily eclipse yours.

November 27, 2017

'Death with dignity' devalues disability (Albany Times Union)

What does it mean to die with dignity? Or the opposite, what is death without dignity or with indignity? There is no legal definition. It is a phrase people like to use with the hope that it is sufficient and accepted. Remember the bit George Carlin did in 1992 about euphemisms? They hide the truth.

November 09, 2017

‘Shocking’ case of disabled woman trapped in care home that wants to evict her (DisabilityNewsService)

A young disabled woman has been unable to leave a residential home for nearly three weeks because its managers are trying to evict her for complaining about her care, and for her attempts to enjoy a proper social life.

October 18, 2017

This app uses crowdsourcing to make cities more accessible (VICE)

This Toronto photographer's app is remapping accessibility around the world.

October 13, 2017

The Conundrum of Consent, Care, and Disability (Medium)

I don’t give you my consent to touch me, but I need you to strip me naked, shower me, wipe my ass, and feed me.

September 29, 2017

Woman fights for Medicaid after government error (WUSA-9)

HYATTSVILLE, MD (WUSA9) - While the battle over the future of healthcare wages on Capitol Hill, some Americans are fighting for affordable coverage right now from home.

The WUSA9 Special Assignment Unit (SAU) met one woman who falls into a gap in the healthcare system.

September 20, 2017

State Plans to Restore Services after Advocates in Wheelchairs Surprise Official (Texas Observer)

On Monday afternoon, Emily Wolinsky and about 15 other disability-rights advocates, most in wheelchairs, sat around a long table at an Italian restaurant across the street from the Texas Health and Human Services Commission (HHSC) building. Over plates of pasta and vegetables, they celebrated. “They fucked with the wrong cripples,” Wolinsky said, laughing.

September 13, 2017

This Comedian in a Wheelchair Kept Crowds in Stitches…Until a Lack of Health Care Sidelined Her (Narrative.ly)

Ally Bruener used comedy to express what it's like to live with muscular dystrophy. But now she spends all her time battling Medicaid just to take care of her basic needs.

August 21, 2017

Gifts from our estranged father, Jerry Lewis (Medium)

Today, I get to do something that for me is more special than celebrating the solar eclipse. I’m celebrating the birthday of my best friend, or as we like to call each other, “my Beastie”, Kareen. It’s also a bit relevant that on a day when I get to reflect on why I love my best friend so much, I’m also reflecting on the death of an individual who once claimed to father me and Kareen. While Kareen and I are not blood sisters, we were once Jerry’s Kids, and because of Jerry Lewis and his adoption of us, we are now friends. This friendship is only one of two gifts I will ever credit Jerry Lewis for giving me.

August 21, 2017

Texas faces a critical shortage of personal care attendants (Texas Standard)

That’s exactly how Nancy Crowther was able to graduate from college and have a successful 25-year career.

“Attendant care was a critical part of being out and about,” she says. “They would help me get up, help me get dressed, help me get my coffee, pack my lunch, get me going and send me off.”

When Crowther was a girl, she was diagnosed with a form of muscular dystrophy. Doctors gave her a grim prognosis. They said that she would be institutionalized and would probably die by the time she was 20.

Instead, she worked for Austin’s transportation authority.

“I loved my job and I really was very well respected in what I did,” Crowther says. “But if it weren’t for the attendant care, I wouldn’t have gotten out of bed.”

Demand for home-based health care is high and growing. Many attendants are managed through subcontractors hired by the state. But there’s a critical shortage of workers.

July 30, 2017

Klein uses title to teach, inspire about disabilities (Cleveland Daily Banner)

Andrea Klein lives with LGMD and is currently Ms. Wheelchair Tennessee 2017. Her platform is “to educate and raise awareness about breathing muscle weakness in neuromuscular diseases and stress the importance of self-advocacy in rare and life threatening diseases.” In 2014, Klein founded an organization called “Breathe with MD,” to educate patients and their families about the symptoms of breathing muscle weakness and provide resources and support so they could become equipped to be advocates for their own appropriate respiratory care.

July 26, 2017

Punk's Ethos of Inclusivity Leaves Out One Major Group (Noisey VICE)

How lack of accessibility at punk venues leaves people with disabilities out of the scene. This article features accessibility work in the punk music scene led by NMD United Board Member Maria Sotnikova.

July 26, 2017

First They Came for the Cripples (New Mobility)

New Mobility contributor Mike Ervin discusses the historical oversight of disabled people in Niemöller notorious prose that begins with, “First they came for the Socialists and I did not speak out because I was not a Socialist.”

July 01, 2017

For Millions, Life Without Medicaid Services Is No Option (NY Times)

The NY Times discusses the importance of Medicaid home and community-based services (HCBS) to maintaining independence and how the proposed healthcare bill may impact those services. Francis Isbell is featured in this article.

June 30, 2017

Activist says the way she was arrested at Gardner's office proves protests work (9News Colorado)

Do sit-ins even work? That's a question posed to one of the 10 protestors arrested inside Sen. Cory Gardner's (R-CO) office on Thursday night. Carrie Ann Lucas said she was cited and released because the Denver jail could not accommodate her ventilator that she has needed for 11 years because of muscular dystrophy.

June 27, 2017

Five Actions Allies Can Take To Support People with NMD (Medium)

NMD United's President, Emily Wolinsky, discusses the fears many people with disabilities are experiencing with the threat of healthcare reform and looming Medicaid cuts. Here's how supporters of people living with NMDs can demonstrate their allyship.

May 08, 2017

Ablegamers Charity makes video games accessible to those with disabilities (Pittsburgh Post-Gazette)

Video game controllers typically are designed as one size fits all — and require the use of two hands. 

But people with a variety of disabilities often cannot use the equipment mass produced by Sony, Microsoft, Nintendo and other companies. 

The national AbleGamers Charity is trying to change that. 

Created as a nonprofit in 2005 and based in West Virginia, the charity has helped thousands of gamers with disabilities obtain and use adaptive equipment, thanks to its donors and sponsorships.

It recently showcased ways it is achieving this mission at the Special Needs Fair and Expo at the Pathfinder School in Bethel Park, with demonstrations and presentations by the charity’s chief operating officer, Upper St. Clair resident Steve Spohn, and program director Craig Kaufman.

May 03, 2017

My Medicaid, My Life (NY Times)

I am a Medicaid welfare queen. When Republicans talk about safety net programs like Medicaid, Social Security and food stamps, they evoke images of people like me gabbing on their smartphones, eating steak and watching TV from the comfort of home. Political rhetoric and media coverage paints us as unmotivated and undeserving individuals, passive consumers of taxpayer dollars who are out to “game the system,” taking resources away from hard-working people.

The reality of being a disabled person on Medicaid is far more complex and nuanced. Many people do not even know the difference between Medicaid and Medicare and simply consider them “entitlement programs,” as if tax breaks and corporate subsidies aren’t entitlements by another name. Medicaid is more than a health care program. It is a life-giving program.

May 02, 2017

Trump's America Not So Great for People with Disabilities (Human Rights Watch)

“I get the sense that my government would rather that I die.” That’s how Alana Theriault, a 50-year-old woman with spinal muscular atrophy, feels about proposed cuts of US $880 billion in Medicaid funding to US states.

If a version of the Trump administration’s proposed American Health Care Act (AHCA) bill eventually passes, it could mean that Theriault can no longer work, get dressed, or even breathe at night.

March 24, 2017

BRÅVES Release “Catch Me” Music Video (HiFi Noise)

BRÅVES have released a music video for “Catch Me.” The video features actor Matthew Lillard and disability rights activist Dr. Victor S. Pineda.

March 22, 2017

Congress: Medicaid Allows Me to Have a Job and Live Independently (ACLU)

As part of the one of five Americans living with a disability, I am happy to be gainfully employed. I am able to file and pay my taxes in a timely manner and can be considered a responsible adult. But this is only possible because I have the support I need to get out of bed each morning. And in order to continue being a productive member of society, I need Medicaid.

Never have I experienced more terror than when talks began in Washington, D.C., of new health care reform legislation that would essentially dismantle the health care system that allows me to live a fulfilling life. My fears came true last week when leaders in the House of Representatives introduced the American Health Care Act to repeal and replace the Affordable Care Act. The legislation is now estimated to slash $880 billion from Medicaid over the next 10 years.

And those cuts will hurt people like me who rely on Medicaid to lead full and dignified lives.

February 22, 2017

Nick Dupree Fought To Live 'Like Anyone Else' (NPR)

Disability rights activist Nick Dupree died last weekend. Tomorrow would have been his 35th birthday.

Back in 2003, he told NPR: "I want a life. I just want a life. Like anyone else. Just like your life. Or anyone else's life."

He got that life.

Dupree had a severe neuromuscular disease and was living in Mobile, Ala. He was in a wheelchair and depended on a respirator to breathe. The state paid for nurses to come into his home — even take him to college classes. But that care was about to end the day he turned 21. He faced going to a nursing home, where he feared he would die.

Every state has a program that pays for care for severely disabled children to live at home, but not every state continues that care into adulthood. When Dupree was 19, he started Nick's Crusade — an online campaign to change the rules in Alabama.

January 01, 2017

2016 People of the Year: The Resisters (New Mobility Magazine)

Activitists with disabilities fight back against the forces of 'better dead than disabled'. Those disabled activists who resist this message are often met with scorn, even death threats, yet they stay strong in their fight to defend the lives that are so often devalued by others.

 

New Mobility Magazine breaks from tradition of naming one Person of the Year to instead honor seven activists collectively called The Resisters, including two NMD United, Inc. Board Members: Emily Wolinsky and TK Small. Congratulations to them and the other five 2016 People of the Year!

December 08, 2016

Dating With a Disability (NY Times)

As part of her onstage persona, Ms. Bruener, who lives in Alexandria, Ky., and uses a wheelchair to get around, dresses up in a buttoned cardigan and a colorful headband, a girlish look intended to throw off her audience. She surprises them with crude jokes. “Boobs are nature’s stress ball,” she quips.

Her hope is to break down the misconception that people with disabilities should be treated like children or non-sexual beings. “I still have all the same desires for the future as any other woman my age,” she says.

At one of her comedy shows, a woman walked up to Ms. Bruener afterward and said, “I think it’s great that you joke about sex, like you actually know what you’re talking about.”

But Ms. Bruener does actually know what she’s talking about. She meets men through dating sites like OkCupid, and is in the “talking stage” with more than one at any given time. She’s not shy about the fact that she gets action. “I put out early,” she says.

December 07, 2016

Anderson Cooper: What Were You Thinking?

Dear Anderson: Like many of the fifty-six million Americans with disabilities, I was stunned by your recent 60 Minutes piece on “drive-by” lawsuits under the Americans with Disabilities Act. Your portrayal of the law as some type of get-rich-quick scheme meant to hurt small businesses was dishonest, and it forced me to find the time to write you this letter.

Your report struck such a nerve with me because I am exactly the type of person who lawmakers and a Republican president envisioned when they enacted this historic piece of civil rights legislation. I was born with a neuromuscular condition, and I have used a wheelchair all of my life. As my disease progresses, I benefit from excellent medical care and advances in technology; most recently, I’ve attached a ventilator to my wheelchair to help me breathe.

I also write to you with the added perspective that comes from being a member of the State Bar of California. I graduated from one of the best law schools in the country, and I spent months studying the Americans with Disabilities Act (ADA) with the most dedicated disability rights attorneys. While I do not practice law today and I have never filed nor been a party to a lawsuit under the ADA, I have a clear understanding of the law and its real-life implications for people just like me.

I think it would be best to address the issues you raised in your piece by asking two fundamental questions. First, as a nation, do we want people with disabilities to be fully-engaged and integrated members of society? Second, if we say yes, then on whom does the burden fall to ensure that we achieve such a vibrant and diverse community?

October 05, 2016

A Disabled Life Is a Life Worth Living (NY Times)

"I decided long ago that if I’m going to like myself, I have to like the disability that has contributed to who I am. Today, my encroaching decrepitude is frequently a source of emotional strength, a motivator to keep fighting, to exercise my full abilities in whatever way possible. Let’s face it, people with disabilities are nothing if not first-class problem-solvers. We find all manner of devices to enable us to raise a fork, drive a car or van, go to the beach. I now control my electric wheelchair with my lips, because my hands no longer function. These very words are being written with a voice-recognition computer.

 

True, it is a hassle having to devise alternative methods for living a normal life. But when it works, Oh, how good it feels! How triumphant and liberating! I’m proud of my persistence and creative coping skills."

September 23, 2016

Paralyzed Teen Jerika Bolen Dies, as Planned (New Mobility Magazine)

As detailed in an earlier New Mobility article, Jerika Bolen was a 14-year-old girl with spinal muscular atrophy type 2 who decided — with her mother’s blessing — to end her life due to what she said was intolerable pain that she believed would only get worse as she got older. She received mainstream media attention this July while raising money for what was called “Jerika’s Last Dance” — a blowout prom she requested as her last hurrah.

“At 10:30 this morning, my beautiful angel was welcomed by her Father into the Heavens above amongst her many SMA friends and family. My heart will hurt forever but her pain is gone and I couldn’t be more comforted imagining the welcoming party above. I owe more thank yous than I can think of now, but please keep us wrapped in your prayers in the difficult days ahead. Jerika, until I can see you rollin’ your eyes at me again … I LOVE YOU MORE!!!” read a statement on her mother Jen’s Facebook page.

“We lost another child to systemic ableism, the medical model, and suicide today. Rest in peace, Jerika Bolen,” wrote Emily Wolinsky who also has SMA type 2 and is the founder and executive director of NMD United, one of five disability rights groups that sent a joint-letter to the Wisconsin Department of Children and Families asking for intervention on Jerika’s behalf.

September 06, 2016

Disability groups seek to intervene in teen's plan to die (USA TODAY NETWORK-Wisconsin , WFAA)

APPLETON, Wis. — Disability rights groups are attempting to intervene in an Appleton teenager’s decision to cease medical treatment and die of the incurable disease that has racked her body and left her in constant pain.

Carrie Ann Lucas, executive director of the Colorado-based Disabled Parents Rights, said her organization is one of several that have asked for child-protection authorities to investigate the case of 14-year-old Jerika Bolen, whose decision to enter hospice care at the end of summer gained national attention.

“A child doesn’t have the capacity to make those types of decisions, and under the eyes of the law, this is a child,” Lucas said Tuesday.

September 04, 2016

MDA Post- Jerry Lewis Losing Money Every Year, But CEO Gets $550,000 (Roger Friedman's Showbiz 411 )

There’s no Jerry Lewis telethon today. There hasn’t been one since 2011. And every year since then, MDA– the Muscular Dystrophy Association– has lost money. In 2010, total contributions were $171 million. In 2014, the last year MDA has filed a Form 990 tax return, total contributions were $135 million.

Nevertheless, the new CEO, Steven Derks, who moved MDA from its home in Arizona to Chicago, made just over $550,000 in 2014.

Total salaries came to $60 million, but none of that went to the local firefighters I saw in my town on Saturday stopping cars to ask for bucket donations to MDA. I felt bad for them. I asked one, “Is this a personal thing? Does someone you know have MDA?” He answered no, they had just been doing to for years. They have no idea that the real MDA– Jerry Lewis, the telethon, the inflated salaries of the executives– have made the organization something far different than it was in its halcyon years.

August 26, 2016

OSU student with muscular dystrophy having trouble getting to class (Fox 25)

STILLWATER, Okla. (KOKH) — Class is back in session at Oklahoma State University but one student with special needs is having trouble getting to class.

Allie Williams is a 35-year-old freshman music major at Oklahoma State. She has muscular dystrophy, a disorder that causes her muscles to grow weaker over time.

"The fact that I can be in a program and was accepted in a program with only 50 percent of a lung is huge for someone like me," Williams said.

Williams is faced with another challenge: her seven and a half mile trip to school. She says she can't get to her classes and is required to go to 20 performances as part of her major.

"Most of those performances happen after six and public transportation in Payne County only goes until 6," Williams said.

She's already missed one class and can't afford to miss another.

"As soon as you miss two or more classes your letter grade drops," Williams said.

August 25, 2016

A psychologist on ‘making disability sexy’ (PBS News Hour)

Dr. Danielle Sheypuk is attempting to derail the stigma around sex and people with physical disabilities. Born with Spinal Muscular Atrophy Type 2, Sheypuk knows what it’s like to have a disability -- and a sex life. But she worries that popular culture tends to show only able-bodied individuals having sex in traditional ways. This is her Brief but Spectacular take on how “anything can be sexy.”

August 14, 2016

Gary Kerness: 'If I have to die out here, so be it.' (Idaho State Journal)

The saga of Gary Kerness, a homeless man with disabilities, living in his power wheelchair on the corner of Fourth Avenue and Benton Street in Pocatello continues.

After being evicted in March from his apartment at the Whitman building in Pocatello following multiple disturbing the peace violations, Kerness — who is diabetic and has muscular dystrophy — refuses any offers to provide him alternative living conditions, according to city officials.

“I don’t have any help at all,” Kerness said. “I have nowhere to go and I don’t have any housing that is safe.”

saga of Gary Kerness, a homeless man with disabilities, living in his power wheelchair on the corner of Fourth Avenue and Benton Street in Pocatello continues.

After being evicted in March from his apartment at the Whitman building in Pocatello following multiple disturbing the peace violations, Kerness — who is diabetic and has muscular dystrophy — refuses any offers to provide him alternative living conditions, according to city officials.

“I don’t have any help at all,” Kerness said. “I have nowhere to go and I don’t have any housing that is safe.”

Kerness said he consistently tried to find housing in Pocatello that accommodates his large power wheelchair. He adds that his options are limited and he deems houses other than his Whitman apartment unsafe, with problems regarding small doorways and troublesome access to the refrigerator.

He claims nobody, including Pocatello Mayor Brian Blad, cares about affordable housing for disabled individuals and will continue his protest by inhabiting the street corner near Albertsons supermarket.

August 05, 2016

Why Have We Become So Quick to Let Our Disabled Die? (Pacific Standard)

In the aftermath of previous physician-assisted suicides, cases like Jerika Bolen’s are dividing disability advocates and proponents of assisted suicide.

August 04, 2016

Cerebral palsy student ‘died after teacher forced him to wear homemade neck brace’ (Your Black World)

A father has filed a $10.5million lawsuit against his son’s school, claiming the ‘repeated abuse’ the 18-year-old special needs student suffered at the hands of his teachers led to his death.

Aaron Hatcher, who had muscular dystrophy and cerebral palsy, could not speak or walk. His father Ronald, from Atlanta, Georgia, claims a teacher at Roswell High School forced the teen to wear a homemade neck brace, causing physical and mental suffering.

August 03, 2016

You Can't Ask That (ABC News)

Misunderstood, marginalised Australians answering anonymous, online questions. Insightful, irreverent and moving, this episode sets the record straight of what it's really like to be a wheelchair user.

July 25, 2016

Adults with SMA Question Teen Jerika Bolen’s Decision to End Life (New Mobility Magazine)

“She’s not sick, she’s not terminal, she’s just in pain. Get her some help, but don’t let her die,” says Emily Wolinsky, president of NMD United, an organization by and for people living with neuromuscular diseases such as SMA. She is also the creator of Dear Julianna, a campaign in which adults with neuromuscular diseases wrote life-affirming letters to a 5-year-old child with Charcot-Marie-Tooth, a type of NMD, whose mother allowed her to die when she said she “wanted to go to heaven” instead of the hospital.

Much of the media coverage makes a point of saying most don’t survive SMA past adolescence, but there are many examples of adults with SMA who have pain, but lead rewarding lives.

“I use a ventilator most of the day, a wheelchair, and a lot of services and my life (even with pain) is pretty fantastic,” says Alice Wong, 42, founder of the Disability Visibility Project, who has the same diagnosis as Jerika.

May 01, 2016

Choosing Hospital Over Heaven: A Life Worth Living - Is death better than locked-in syndrome? (MedPage Today)

Dear Julianna, a Neuromuscular Disabilities United letter-writing campaign, breaks that silence. President Emily Wolinsky, who has spinal muscular atrophy, said that while Dear Julianna was inspired by Julianna, its purpose is broader: "To educate ... about life with a neuromuscular disability (NMD), and to showcase thousands of individuals with NMD living happy and wonderful lives." To protect the Snows, Wolinsky, 38, declines letters that reference the family or pass judgment on their decision.

Contributors have written about thriving despite dire prognoses; adapting to disease progression; experiencing interventions like nasotracheal suctioning, surgery, tracheostomies, respirators, and catheters; even marriage, pregnancy, and childbirth.

March 21, 2016

‘We Carry Kevan’ Project Helps Disabled Man Travel The World As A ‘Human Backpack’ (Huffington Post)

A man with spinal muscular atrophy is refusing to let his disability stop him from travelling the world, even if it means becoming a “human backpack”. 

Kevan Chandler will visit France, England and Ireland during a European tour, all on the shoulders of his friends. 

For three weeks Chandler, whose disease causes his muscles to progressively weaken, will see the sights from a specially-adapted seat.  

“I have a dream to visit Europe and explore the history and amazing sites that are there but as you can guess a lot of that is really difficult with a wheelchair involved, “We are all broken in some way or another, and so we all need our burdens to be held up and carried by each other, and the only way that’s going to happen is if we help each other out, and that requires sacrifice of self,” he said.

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