woman being taken out of her wheelchair

Disability Advocates Arrested for Protesting Medicaid Cuts Outside Sen. McConnell's Office

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On Thursday, a group of disability advocates with national disability rights organization ADAPT gathered outside of Sen. Mitch McConnell’s (R-KY) office to protest cuts to Medicaid proposed by GOP Senators in a bill released earlier that day.

“The Senate is trying to pass the American Health Care Act bill, and that is going to drastically affect people with disabilities,” Marilee Adamski-Smith, a spokesperson for ADAPT, told The Mighty. “We won’t be able to live in our own homes, we’ll be forced into nursing homes. So this is a really important bill we want them to look at and make sure that this does not get passed.”

Since the protest began, multiple arrests have been made. According to video footage being shared on Twitter, several protestors have been removed from their wheelchairs and dropped on the ground.

The GOP’s health care plan proposes cutting $834 billion from Medicaid as well as ending Obamacare’s Medicaid expansion program. “The American Health Care Act caps and significantly cuts Medicaid which will greatly reduce access to medical care and home and community-based services for elderly and disabled Americans who will either die or be forced into institutions,” Bruce Darling, an ADAPT organizer taking part in the protest, said in a statement. “Our lives and liberty shouldn’t be stolen to give a tax break to the wealthy. That’s truly un-American.”

The protest falls on the 18th anniversary of the Olmstead v. L.C. A Supreme Court ruling, which made segregating people based on their disability illegal and established disabled people’s right to live in their communities. “Not only will AHCA take away our freedom — that lost freedom will also cost Americans much more money,” Dawn Russell, an ADAPT organizer from Colorado, said. “The nursing facilities that people will be forced into are much more expensive than community-based services that AHCA would cut.”

Beyond today, ADAPT will continue to protest the bill and any cuts made to Medicaid. “We’ll be working in our own hometowns throughout the nation to make sure our senators and representatives hear our voices,” Adamski-Smith said. “Please call [your] senators and tell them how this will affect millions of people with disabilities and seniors… We want to contribute to society and we won’t be able to do that if we’re forced into nursing homes and other institutions.”

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When a Pet Becomes a Service Dog

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When I was 21, I ended up getting a rescue puppy. Not long after we got this big-headed puppy (who we named Jagerbomb), I found out I was pregnant with my son. When my son “Monkey” was born he had some GI issues which resulted in him projectile vomiting every feeding. Every time Monkey got sick, Jager was right there trying to comfort him while I cleaned him up.

One night, when Monkey was around a year old, Jager showed us he was there to protect and help our son. Monkey was asleep on his bedroom and Jager was roaming the house. All of a sudden, I heard him trying to open my bedroom door with his big dinosaur head. Before I was able to get the door open, I heard him take off into my  son’s room and start barking at the monitor. I got in there and Monkey was wheezing and his lips were discolored. I grabbed him, got him in the car and made it to the hospital in under five minutes. Yet again, my son was in respiratory distress.

After that, we noticed Jager was glued to Monkey. Anything Monkey wanted to do, Jager was willing to do. When he would have a meltdown, Jager was next to him. Bedtime? Jager walked him to his room and stayed until Monkey was asleep.

Over the five and a half years we had Jager after Monkey (and his little sister, Buggy) were born, they were inseparable. Jager knew my son’s every need before I could respond. Until one day, we woke up and Jager had gotten very sick during the night. He ended up passing away while Monkey was on a weekend trip with his dad.

Every so often, Monkey will ask me when he will see Jagerbomb again. He will say “Hi” to the wooden urn we keep his ashes in by the couch and look at pictures of him and Jager. When we initially got Jagerbomb, we never intended for him to be a service dog. Apparently, it was the job he was meant to do.

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Thinkstock image by Tatyana Tomasickova.

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Dear Doctors, Please Complete My Disability Paperwork

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Last week, I learned why some of my doctors won’t fill out my disability paperwork and I was surprised. It wasn’t the time it took. Their decisions seemed to be based on principle. The nurse practitioner at my headache clinic said, “Patients who work do better with treatment, so we encourage our patients to work and therefore don’t fill out disability paperwork.” Later that day, I watched the Migraine World Summit 2016 where a doctor said something close to, “You can be in pain anywhere so you should be at work — which will make you more happy and successful.”

I feel I must challenge these notions. I agree that patients should work for as long as they can, but there are people who need to miss work during pain or illness flare-ups, switch to part-time jobs, change careers, and even stop working altogether because of their health issues. These changes are simplified when doctors complete paperwork.

Contrary to what many people believe, the Family Medical Leave Act (FMLA) and Disability Insurance don’t require patients to completely stop working. FMLA allows patients to miss 12 weeks of work without repercussions from their employer. Many people have jobs with strict attendance policies. If they miss more than their quota of “sick days” due to illness without having a doctor complete FMLA paperwork, they will lose their job. In these instances, even when they are well enough to work, they will no longer have a job. If doctors want struggling patients to continue to work, they should fill out their FMLA paperwork.

Disability paperwork is also misleading. Here is my experience with it. I worked full-time for 10 years as an educator while having a constant migraine. Though my pain worsened, I resisted leaving work because I wanted to “do my part” and contribute. But there came a point when I could not continue. I was an ineffective teacher and I was unable to meet my basic needs, let alone those of my students. I had private disability insurance which defined the first 24 months of “total disability” as “unable to perform each of the material and substantial duties of your employment.” Because I had a doctor willing to fill out FMLA and private disability paperwork, I was able to take a leave of absence from my teaching position.

I took several months to regroup, try some new migraine preventative medications, recover from bad side effects, and switch to other medications before I was able to return to a part-time, non-teaching job. Though I was working, the pay from my new position did not cover basic expenses. At this point, I applied for Social Security Disability Insurance (which did not require my doctors to fill out paperwork, though my medical records were reviewed). I received it and continued to receive a portion of the private disability benefit, even beyond 24 months, because “Disability means you are unable to perform the material and substantial duties of any gainful occupation …” Social Security has similar guidelines and basically defines this as earning less than $1170 a month. My doctors were willing to complete Continuing Disability Benefit forms and I was able to work for five years while receiving disability payments. Even though my doctors filled out several forms, I was still working.

Then there are patients who really can’t work at all. Unfortunately, for the last two years, I have been one of them. I have a constant migraine that spends most of the time on the pain scale between 6-8. You may be able to be in pain anywhere, but I was in greater pain at work; where I was unable to avoid my triggers or rest between activities. Contrary to what the earlier mentioned doctor said, in the weeks before I left my job, I was unhappy working in my condition and I was unsuccessful. I was failing at my tasks because of cognitive and physical impairments and I was exhausted, not to mention being unable to keep up with basic chores at home.

My pain is better when I exercise; participate in very limited social activities; and do self-care activities like cooking, food shopping, cleaning, laundry, paying bills, and visiting doctors when I am at a level 6 or lower and with rest breaks in between. My migraine symptoms cause me to do these “regular activities” at a slow pace and they take up all of my energy, leaving nothing for a job.

My career now is to be a great patient — I concentrate on trying new treatments and maintaining a healthy migraine lifestyle. Writing this article has been a luxury for me and has taken me over a year to complete. I hope the preventative medication I began three weeks ago starts to work and that I find myself able to return to employment, but today I am not able. Today, I have bills to pay. Living costs money and living a healthy lifestyle with quality healthcare costs even more money.

My disability benefits help me to survive. They don’t allow for a lavish life and they don’t discourage activity. They do allow me to get Medicare, pay some of my basic living expenses (I can’t afford housing so I live in my parents’ house), and pay the co-pay for my doctor visits.

Like each treatment plan, whether or not doctors complete patient disability paperwork should be decided on an individual basis. Having a policy of never filling out disability paperwork is a one size fits all approach. For most people it isn’t even an issue, but there are a fraction of patients who need this help. I find it hard to believe that doctors are not capable of recognizing these patients. Becoming disabled did not happen to me overnight. It was a progression documented in my medical record. It is fair to expect providers to know their patients and to tailor their care to each patient’s specific needs.

Doctors are tasked with giving their patients the tools they need to live their best possible lives. This includes prescribing medication, giving resources for lifestyle changes, and filling out paperwork. Paperwork that allows patients to change, limit, or leave work while still meeting their most basic needs — food, shelter, and healthcare.

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Jordan Bone sitting in a wheel chair in a white dress. Tess Daly sitting in a wheel chair in a blue dress, in a green field

7 Beauty Instagrammers With Disabilities You Should Be Following

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Living with a disability can affect your life in many ways, but it doesn’t have to change your style or beauty routine. While the fashion industry is becoming more inclusive and accessible, there are plenty of influencers living with disabilities who have been making beauty and style accessible for years.

Here are seven Instagrammers to follow for style inspiration, education and adding an extra dose of fabulousness to your feed. From makeup tutorials to outfit of the day posts, they make the world of beauty and fashion an inclusive one.

1. Jordan Bone

Wedding ready ????✨???? #ootd #manoloblahnik #weddingguest #quadriplegic

A post shared by Jordan Bone (@jbone89) on

When she was 15 years old, a car accident left Jordan Bone paralyzed from the chest down, sending her into a deep depression. Over time, she re-taught herself how to apply makeup and now teaches others how to do the same.

2. Kaitlyn Dobrow

After contracting bacterial meningitis in 2013, Kaitlyn Dobrow underwent a quadruple amputation. In June 2016, she started posting beauty tutorials on YouTube, applying her makeup with prosthetic limbs while talking about her life as an amputee.

3. Lucy Edwards

Lucy Edwards is a vlogger, motivational speaker and blind beauty blogger. She shares makeup tutorials, pictures of her guide dog and vegan recipes. On her YouTube channel, she discusses living with blindness as well as makeup hacks and relationship wisdom.

 

4. Marimar Quiroa

She says beauty is pain???? and there’s beauty in everything????

A post shared by Marimar Quiroa (@makeupartistgorda66) on

Marimar Quiroa is a blogger and YouTuber who started her channel to represent and show support for the deaf and hard of hearing community. She often posts fashion and beauty looks and offers in-depth makeup tutorials — showcasing products and demonstrating how to apply them. Quiroa also uses sign language and subtitles to communicate with viewers.

5. Sarah Alexander

Sarah Alexander of “Sarah in Wonderland” is a beauty blogger who lives with Ehlers-Danlos syndrome and uses a wheelchair. On Instagram, Alexander showcases beauty products and uses her personal blog to discuss a variety of topics including life as a person with a disability. Alexander also conceptualized Spoonie Post, a pen pal network between people living with chronic illnesses.

6. Madison Lawson

I will never be over this eyeliner ????????

A post shared by Madison Lawson (@wheelchairbarbie) on

Madison Lawson lives with two rare forms of muscular dystrophy. On her Instagram account, she regularly posts about her everyday life and showcases beauty products and colorful makeup looks.

7. Tess Daly

Tess Daly is a U.K. based fashion and beauty blogger who lives with spinal muscular atrophy type 2. She frequently posts about her makeup looks, outfit of the day and adventures around the U.K.

Have a beauty or fashion Instagram account you love? Let us know in the comments below. 

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blue men's shirt, tie and blue womens shirt, all infused with magnets

MagnaReady Wants to Make Getting Dressed Easier for People With Disabilities

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When living with a disability, sometimes a task as simple as getting dressed can prove painstaking. MagnaReady, founded by Maura Horton, is a clothing company that wants to make getting dressed a lot easier.

Horton founded MagnaReady after an incident involving her husband, Don, who was diagnosed with Parkinson’s disease at an early age. A college football coach, Don was getting dressed in the locker room after a game and was unable to button his shirt. Because of his disability, Don had limited mobility in his hands and needed a player to help button his shirt for him.

When Don arrived home, he was anxious a similar situation might occur. Horton then came up with the idea to magnetically infuse the buttons on his shirts, restoring freedom to his everyday routine.

MagnaReady shirts, rather than having traditional buttons, are infused with magnets that automatically clip together at the front. Buttons are sewn on the outside to maintain a professional appearance while allowing ease of access to users. Because the shirts are infused with magnets, they are not ideal for those with pacemakers.

Each MagnaReady shirt is 100 percent cotton, stain-resistant and wrinkle-free. They also come in a variety of styles for men and women, with each shirt costing $64.95. Horton told The Mighty the company plans to release a line of pants soon.

So far, Horton said feedback has been positive and customers reach out every day to share their personal journeys. One customer told MagnaReady “Love your shirts…I had hand surgery and left me with numbness in my fingers. While I can button regular shirts it takes me forever and I can never get the collar buttoned. I brag on it all the time. My neurologist thought it was great.”

MagnaReady was also featured in the White House’s 2016 fashion show “Celebrating Inclusive Design,” alongside brands such as Runway of Dreams, which partners with Tommy Hilfiger to create adaptive clothing for children and ABL Denim, which makes easy to remove jeans.

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'Born This Way' Discusses Sex Education and Dating With Disabilities

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Lauren Appelbaum is the communications director of RespectAbility, a nonprofit organization fighting stigmas and advancing opportunities for people with disabilities.

Sexual education for young adults with developmental and intellectual disabilities is extremely important. “Born This Way,” a reality television show that stars seven diverse young adults with Down syndrome, is doing its part to highlight this.

According to the National Crime Victimization Survey, an average of 59,000 adults with disabilities are raped or sexually assaulted each year. Approximately half of all adults with cognitive disabilities will experience 10 or more sexually abusive incidents in their lifetime.

The upcoming episode of “Born This Way” on June 20, 2017 highlights the importance of sexual education as it relates to dating and marriage. The cast speaks with Terri Couwenhoven MS, CSE, a well known sex educator and author. Couwenhoven specializes in the design and implementation of sexuality programs and resources for people with cognitive disabilities, their parents and the professionals who support them.

In coordination with Couwenhoven, RespectAbility has released a lengthy guide featuring resources for sexual education for children, teenagers and adults with disabilities, with a focus on those with intellectual and developmental disabilities.

“Born This Way,” which recently won an Emmy for being the best reality show on TV today, is not an ordinary reality show. It stars seven diverse young adults with Down syndrome. During season 3, episodes have tackled complex issues such as self-determination for people with disabilities in healthcare choices and the lack of employment opportunities for all people with disabilities.

The episode will air on Tuesday, June 20 at 10 PM ET/9c on A&E Network. Join RespectAbility for a live Twitter chat using #BornThisWay and #BTWchat.

Learn more at RespectAbility.

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