What the Health Care Overhaul Means for a Disabled Woman Like Me

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President Trump recently got a bill through the House that would change the current health care laws. In short, this law would allow health insurance companies to either hike up costs or deny coverage altogether for an assortment of “preexisting conditions” such as psychiatric disorders, autism, asthma, and pregnancy… just to name a few. That would put nearly 1 out of every 2 Americans in a bind very shortly, potentially leaving them without proper health care. Granted, the bill still needs to pass the Senate, however the whole situation is looking rather grim.

I am considered disabled. I am also a woman who has been pregnant. I have many conditions I could be denied coverage for under this bill. Quite honestly, that scares my husband (also disabled) and myself. If for some reason I were to have a lapse in my insurance coverage, I could be denied care for some very serious conditions — as could my husband and my son. Currently, between the three of us, we have nearly half of the conditions on this possible list for the bill. My son could lose his doctors. My husband? His medications. Me? Everything, from a medical standpoint.

Just because someone is disabled, it does not mean we are not worthy of proper medical care. We did not wake up one morning and say “Ya know what? Having asthma and bipolar disorder sounds so amazing! I think I’ll try that on for size!” Not only do we already face judgment and criticism from our peers, but now insurance companies are being given the green light to discriminate against us as they please.

I’m Shawna and #IAmAPreExistingCondition

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Thinkstock image by William Potter.

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NYC Subway Car

New York City MTA Introduces Courtesy Buttons for Passengers With Disabilities

New York City wants to help passengers with disabilities find a seat on public transportation. On Sunday, the Metropolitan Transit Authority (MTA) began a pilot program designed to help people with disabilities, senior citizens and pregnant women get a seat on the city’s buses and trains. The program, which runs through Labor Day, provides those who request them with pins reading, “Please offer me a seat. Courtesy Counts.”

Courtesy Counts Pin


“Pregnant riders, seniors and those with disabilities often need seats more than others but their condition may not always be visible,” MTA interim executive director Ronnie Hakim said in a press release. “We hope this campaign will help their fellow riders to be more willing to offer them a seat without having to ask a personal question first.

Currently, passengers with disabilities have access to priority seating, seats which are designated for those who are unable to stand for the duration of their journey. However, these seats are often used by non-disabled passengers.

The program follows two recently filed class action lawsuits against the MTA, claiming New York City’s public transportation is inaccessible to people who use mobility devices and those with disabilities that make it difficult to use the stairs. According to the lawsuits, less than 25 percent of subway stations (112 out of 472) have elevators, making New York City’s subway station the least accessible in the United States.

“While we continue to designate ‘priority seating’ for riders with disabilities, this is another way to expand the availability of seating for those who need it most,” Hakim added. “The MTA is committed to promoting access to our system for people with disabilities. Over the coming years, this will involve spending billions to make more of our system ADA-accessible through the addition of elevators at stations and focusing on ways we can improve the availability of our existing elevators.”

The awareness buttons are similar to the ones introduced last August by London’s department of transportation as part of a pilot program. In April, London began offering the pins on a permanent basis. The MTA says its program is the first of its kind in the U.S.

Those interested in receiving a pin can easily apply on the MTA’s website. Pins are mailed out within two to three weeks. 

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Please Don't Feel Sorry About My Disability

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Upon hearing the story of what happened to me at age 28 (getting sick; the beginnings of physical disability), most people look at me with pity in their eyes and sympathy stitched on their faces, and tell me how sorry they are. I understand this is a response born of compassion and of a desire to comfort. But it also stems from the inability to relate, ignorance of how this part of my life experience has played out and affected me, and misunderstanding of my feelings concerning my illness and disability.

You see, I am not sorry about becoming ill and disabled. And if I’m not sorry, why should you be? It’s true my life changed completely back in 2009 – all the dreams, goals and plans I’d had for myself fell out of reach; all the hard work I’d put into earning my Master’s degree and being a Special Education teacher became meaningless; life as I’d known it for 28 years disintegrated.  At first, I admit to being full of self-pity. I felt wronged by life, a victim of cruel circumstances. I felt depressed, angry and hopeless.

One evening, I was crying out through sobs and tears, “Why me?” over and over. All of a sudden, a new and seemingly alien thought occurred to me – why not me? I was perfect for this situation! I knew how to modify my environment, sometimes with ordinary household items; I knew the services and organizations that were at the disposal of the local disability community; and the whole time I thought I’d been teaching, I’d been the student. The children I worked with had shown me how to be determined, motivated and enjoy the life I was given. I could choose to wallow in grief and pity or I could embrace the new circumstances of my body and do my best with what I still had.

Since then, I’ve gone through many stages physically, mentally, emotionally and spiritually. I’ve learned a lot about myself, about how strong I am, what I’m able to handle. I’ve learned new coping skills. I’ve learned to accept my illness and prognosis and have arrived at a peaceful place with it. I’ve learned how to use my voice to advocate for myself, and now for other parents with disabilities. I’ve learned how to educate and be effective in my community. I’ve learned that my abilities and strengths far outweigh my limitations and weaknesses.

I’ve also been brought so much closer to God. I didn’t even believe in Him back when I was diagnosed, but can look back at that night and get chills because I now believe He loved me enough to be in the ER with me that night, regardless of how little I thought of or felt about Him. The director of the ER had written his doctoral dissertation on my extremely rare neurological disease and was able to diagnose me, which not only brought back some of my eyesight and saved my life, but ended the three-month-long search for what was going so wrong with my body.

My faith is strong these days and carries me through the difficult times, the scary times and even the times when doubt may creep in just enough to cause worry lines to form on my face. I believe He’s watching over me and loves me very much. He doesn’t see my failing body, my medical equipment or the awkward way I sometimes wander through the days – He sees my heart. To Him, I’m perfect. And, most days, I’m able to see myself through His eyes.

Because of getting sick and losing so many abilities of my body, I’ve been able to find gratitude, which I honestly didn’t have much of before becoming disabled. I’d spent 28 years taking every moment and each movement for granted. Now I savor each day and rejoice in what my body is still capable of doing. This has been yet another gift from what so many people seem to view as “a tragedy” in my life.

Please don’t feel sorry for me. For 28 years, I lived in a healthy, able body but had a broken, damaged and deteriorating spirit. My outlook on life was negative and my self-esteem near non-existent. Since my diagnosis, the situation has reversed itself. Now, my body doesn’t work so well, but my heart and soul are overflowing with joy, peace, contentment, self-confidence and a zest for life. I’m grateful for each day and enjoy every moment. How could I be sorry about that?

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Photo via Thinkstock.

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Why My Mother Has Been My Greatest Ally as a Person With a Disability

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My mother is a hardworking women. She is not perfect, as she often expresses, but to me she gets pretty damn close. I know that no matter what I do, she will always help me to the absolute best of her abilities. More than anything, she is always there for me when I need her. She was my nurse 24  hours a day, seven days a week through all the months that I spent in the hospital. Not once did she leave my bedside. Never once did I ever hear her complain.

All my life, my mother has been my greatest ally. My father took the cautious approach to raising a child with a disability. I do not blame him for this; fear can affect the best of us and it was simply his method of making sure I wouldn’t get hurt. Every time I expressed interest in a new hobby, my father was quick to shut it down, saying whatever I wanted to do was just too risky considering my impairments. How could I swim with only one functional arm? How would I go away to summer camp and pee in the woods with only one leg?

I was always adamant about what I wanted and I am extremely lucky that my mother and I shared the same spirit and enthusiasm for life. She would advocate to my father on my behalf. I participated in so many activities and gained wonderful experiences thanks to her belief in me. I went on to be a camp counselor and swim competitively at the national level. I know that without my mother, these dreams would never have materialized.

One memory that stands out vividly is when during a particularly hard time in my life, struggling with a lot of physical and emotional pain, I decided to self-medicate. She never once judged me or chastised me for my actions, but instead came to me with the most immense compassion and strength, telling me over and over again how much she loved me, no matter what I thought of myself.

My mother’s life has not been easy. She has seen her fair share of sorrows and setbacks, but I have never seen anyone else handle their struggles with such grace.

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Thinkstock photo by Nadezhda1906.

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What the Medicaid Fight Means to Me as Someone With a Disability

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Congressional Republicans, spearheaded by Speaker Paul Ryan and Vice President Mike Pence, are under deep pressure to pass legislation which would repeal and replace the Affordable Care Act — the groundbreaking health care legislation passed in 2010 under President Barack Obama. Under the AHCA, Medicaid funding would be drastically cut – with such severe restructuring that it would be the end of the program as we know it. The legislation also eliminates protections for people with pre-existing conditions to have guaranteed access to healthcare.

As someone with a disability, this legislation has a deeper impact than most other pieces of legislation do on my day-to-day life. Health care is critical for anyone with a disability, because our disabilities are so inherently impacted by our health. My body is impaired and constantly working to keep up with the rest of the world despite facing significant barriers. Health care provides me with pain relief, physical therapy, and answers. Medical professionals help me understand my body in ways WebMD cannot and should not. They provide me with the answers that ensure I can take care of my body, and help me learn to love and cope with the negative implications of my cerebral palsy.

Health care is a bridge for people with disabilities. It bridges my disabled body to resources and support that allows me to be the strongest I can be. Health care anchors me in a deeper understanding of my own body, my limitations, my weaknesses and my strengths. And perhaps most importantly, health care gives me compassion and support.

When the government prevents people with disabilities from accessing health care, they are ultimately barring us from the very services that help us exist and thrive with our disabilities. We already exist in a world with structural and physical barriers that make it harder to live with a disability, such as unfair stereotypes, stairs, buildings without ramps etc. Denying us health care creates an even more terrifying personal barrier — a barrier that prevents us from accessing our own bodies and our own health.

According to the Center for American Progress, more than half of children with disabilities rely on public insurance coverage, such as Medicaid, for medical services and supports. Medicaid is a critical program that allows millions of people with disabilities to access necessary health care.

As someone with a disability, I have a lot to lose when our government decides they can mandate whether or not I have access to health care. As someone with a disability, health care is not a mere checkup, but the difference between whether or not I can live without pain. It is the difference of whether I merely survive, or thrive. It is symbolic of whether my country wants to help me utilize my strengths, or will allow me to be barred by the untreated limitations of my disability. For many people with disabilities, access to health care is simply life or death.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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ABC's 'Speechless' Renewed for a Second Season

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Good news, “Speechless” fans. ABC’s hit show about the DiMeo family has been renewed for a second season. Minnie Driver, who plays Maya DiMeo, the family matriarch, tweeted the news on Friday.

The show stars Micah Fowler as JJ DiMeo, a teenager with cerebral palsy who uses a letter board to communicate. Like his character, Fowler also has cerebral palsy. John Ross Bowie, Kyla Kenedy, Mason Cook and Cedric Yarbrough also star.

“I hope as people watch ‘Speechless,’ they get to know JJ as a very normal person, to the point that the don’t even see the disability. I specifically hope to bring a huge amount of public awareness to cerebral palsy,” Fowler previously told The Mighty. “[M]ost importantly, my hope is that the show will make people less uncomfortable around people with disabilities and more encouraged to interact with them, to look beyond the physical or other limitation and see the real person, the heart, the personality, the love and yes, even the humor.”

You can catch the season finale of “Speechless” on Wednesday, May 17. An air date for the second season has yet to be announced.

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