Chasing Dreams

Chisa Merriweather hugs her son, Chase

By Guest Blogger Chisa Merriweather, Blogger at ChaseUrDream.com

December 14, 2013 was a cold and snowy morning. I woke up beside Chase in the ICU at Children’s Hospital of Philadelphia to the faint sounds of medical monitors, but somehow they sounded different that morning. The room he had spent the last two months in seemed calmer. I glanced over at my husband, Chad, who was sitting on a couch by the window. He looked up at me and whispered, “We’re finally seeing the light at the end of the tunnel”. The day prior, Chase had undergone his last surgery for 2013: the amputations of both his hands and feet.

The days of feeling sorrowful about Chase’s situation were over! I had cried my last tear and we were now ready to help Chase write his next chapter. This is how it all began.

While on what was to be a quick getaway family vacation to Disney World in October of 2013, our son, Chase, was suddenly stricken with a near-deadly strand of the flu virus which quickly sent him into septic shock. Chase was hospitalized at the Florida Hospital for Children for nearly a month. Just as we thought things were improving, Chase suffered a brain hemorrhage and underwent emergency brain surgery and was also on dialysis. While we were very thankful for the tremendous work and effort from the staff at Florida Hospital for Children for saving our son’s life, we wanted to get Chase back home and provide a bit of normalcy for our oldest son, CJ. In November 2013, the doctors in Florida assisted in making the trip home possible. Chase was now in stable condition and was able to be airlifted to Children’s Hospital of Philadelphia, but was still in a sedated state.

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The Disabled Parenting Project: An Online Community by and for Parents and Prospective Parents with Disabilities

Guest Blogger Robyn Powell, Team Leader at the Disabled Parenting Project

By Guest Blogger Robyn Powell, Team Leader, Disabled Parenting Project

Last month, the Disabled Parenting Project (DPP) launched its website. The DPP is an online, interactive community for sharing experiences, advice and conversations among disabled parents as well as those considering parenthood. While there are other websites out there that address certain aspects of parenting with a disability, the DPP is the first and only online community to be developed by and for the entire cross-disability parenting community, embracing the disability community’s important mantra: “nothing about us, without us!”

A little more than 25 years ago, the ADA was passed with the goal of ensuring “equality of opportunity, full participation, independent living, and economic self-sufficiency.” While we are not quite there, we have had many successes. Today, we enjoy increased opportunities to further our education, live in our community, and secure employment. Many in the disability community are now choosing to raise families. Despite their increasing numbers, parents with disabilities face notable disparities and are significantly more likely to experience exclusion, stigma, and discrimination. In particular, disabled parents lack venues for sharing information and developing their voices and advocacy skills as parents. In fact, the National Council on Disability (NCD), an independent federal agency that advises the President and Congress on disability policy, noted in its 2012 report, Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and their Children:

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Accessible Workplace Technology: Signed, Sealed, Delivered

Meeting Stevie Wonder at CSUN in San Diego on March 23.

Editor’s Note: This blog was cross-posted from the U.S. Department of Labor’s blog.

Last week, I had a brush with a bona fide music legend — the great Stevie Wonder. Was I starstruck? Of course. I’ve long admired his musical accomplishments and advocacy for people with disabilities. His appearance at the Grammy Awards in February highlighted once again the need to improve accessible technology, particularly in the workplace.

What brought me, Stevie Wonder and hundreds of other accessibility advocates together was the International Technology and Persons with Disabilities Conference. Commonly known as “CSUN” in honor of its sponsor, California State University, Northridge, the event is a who’s who of people leading the charge on accessible information and communications technology (known as ICT). I was honored to serve as this year’s keynote speaker, which gave me the chance to share why the Labor Department sees the need for accessible ICT in the workplace.

To put it simply, our commitment to accessible technology is about basic civil rights, as well as the collective productivity of America’s workforce. That’s because inaccessible technology — from websites, to software applications, to online job applications — is preventing many people with disabilities from doing their jobs effectively, or even applying for jobs in the first place.

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The Power of “Side by Side”

Aaron Bishop, Commissioner, Administration on Disabilities, speaks at an event.

Editor’s Note: This blog has been cross-posted from the Administration for Community Living’s blog.

By Aaron Bishop, Commissioner, Administration on Disabilities, Administration for Community Living

Every March we celebrate Developmental Disabilities Awareness Month and the many contributions people with developmental disabilities (DD) make to our society. This year, the National Association of Councils on Developmental Disabilities, Association of University Centers on Disabilities, and National Disability Rights Network chose the theme “Side by Side” to highlight the principle that everyone benefits when people with and without disabilities live, learn, and earn “side by side” in the community.

This idea of true inclusion and integration is the backbone of our work at ACL, and we are proud to work with our DD network partners to make it a reality for all people.

However, it is not only people with and without disabilities who are stronger working side by side. This simple, yet powerful idea also applies to all of us working within the disability community. Historically, we have often worked within our individual spheres. DD advocates all knew each other and worked together, the independent living community did the same, and so forth. We were each doing great work, and we occasionally came together to accomplish great things such as the passage of the Americans with Disabilities Act,  but we also missed some opportunities to achieve more by working together.

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What is an Invisible Disability?

Invisible Disabilities Association - InvisibleDisabilities.org

By Guest Blogger Wayne Connell, Founder, Invisible Disabilities Association

What is an “invisible disability?” Is it a specific illness or condition, such as multiple sclerosis, fibromyalgia, bipolar disorder, diabetes, a Chiari malformation or syringomyelia? Is it the symptoms of an illness or disability, such as pain or fatigue or neuropathy or brain fog? Why do we even use the phrase or where did it come from? Isn’t a disability just a disability, no matter if you can see it or not? Are people treated differently because their disability manifests itself visibly? Is having a disability different from being disabled? All great questions! Is someone, who has an illness or is in pain or has a disability or is disabled, a bad person who should be treated like a lesser human? I can answer that one. NO!

Twenty years ago in 1996, my wife, Sherri, coined the term “invisible disability.” Why did she come up with it? After receiving a diagnosis of primary progressive multiple sclerosis and chronic late stage Lyme disease in 1991, at the young age of 27, Sherri endured the stares and accusations and disbelief of strangers and friends that questioned how she could be disabled and still walk with seemingly unapparent outward signs of her disabilities. People would often scream at her when she parked in an accessible space or ignore her when she collapsed on the floor of a department store. So the phrase, “I have an invisible disability,” became an apt description of what she was living with.

As a tech guy, I decided to use some of Sherri’s pamphlets she wrote to help friends and family better understand what she was going through such as “Multiple What? Untangling the Perplexities of Multiple Sclerosis” and “Don’t Judge by Appearances – Parking with Invisible Disabilities” and created the InvisibleDisabilities.org website. That is when The Invisible Disabilities Advocate® was launched (which became the Invisible Disabilities® Association (IDA)). Almost immediately, 25,000 people a month started coming to IDA’s website and said that we put into words what they had been trying to tell their friends and families. “Invisible disabilities” progressed from a very descriptive term to an international organization and movement.

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