Sunday, July 26, 2015

Celebrating Twenty-five Years of the Americans with Disabilities Act

On July 26, 1990, President George H. W. Bush signed the Americans with Disabilities Act into law, making it the most comprehensive piece of legislation written to protect the rights of individuals who have disabilities. Sadly, twenty-five years later, there are still many Americans who have no idea what the law is, or why it's significant.

I suppose I'm passionate about the ADA because it's affected the lives of so many people I hold dear, but I'd like to think that it would hold significance for me even if it weren't so important to the ones I love.

My mother was born in 1936 and at seventeen years of age she had her first clinically identifying episode with what would later be diagnosed as Multiple Sclerosis, a debilitating disease of the central nervous system. Despite the fact that she was very self-conscious of her mobility issues, Mom lived her entire adult life gracefully and with dignity, as a person with a disability.

When Mom became disabled, there were no laws to protect her civil rights. After a lengthy absence her freshman year of college, mom went on to graduate with her class and secured a job as an elementary educator. She taught at a school that incorporated ungraded classrooms as part of their educational program--an atmosphere where students were grouped, based on their ability and level of work, rather than chronological age. Mom left her teaching job when she was expecting me, and wasn't ready to return until five years later--after my sister's birth. The exascerbations and remissions of the MS ebbed and flowed, but sadly, when Mom was ready to return to her teaching job, she could no longer legibly write or sign her name and she was turned away because of her physical limitations. One of Mom's greatest disappointments in life was that she was never able to return to the job she loved.

Today, the Americans with Disabilities Act protects workers with disabilities and ensures that they are provided with reasonable accommodations so they can continue working. Had the ADA been signed into law twenty years sooner, Mom's life might have been very different.

I'll never forget my first act of grass roots advocacy. The ADA hadn't yet been drafted, and polite letters failed to "encourage" our local library to install a lift to provide access to our century-old library. I had no clue, at the time how empowering advocacy could be. When writing letters to the library fell on intentionally deaf ears, we called up our state representative and the local media, inviting them to our "assembly". I helped my friend dress up in her Sunday best, escorted her on foot as she drove her Amigo buggy across town and we stood outside the library, explaining to the local newspaper and television station that, while it was wonderful the library offered a free service to deliver books to library patrons with disabilities, it was impossible to know what was even available at the library without first being able to get inside. Within weeks, a letter from our thoroughly chastised library came to my friend's home, inviting her to discuss her ideas so that the library could better meet the needs of everyone in the community.

I remember once thinking that the ADA was like a magic key that could open the doors to the kingdom. I grew up in a small, rural community where not one business entity was accessible. The old idiom "being on the outside looking in" could have been written expressly for individuals with disabilities, because before the ADA, that's largely how life was, how it is still, in some parts of our country, but because of the ADA, those people on the outside looking in have the tools to bring about change in their communities. The ADA accessibility guidelines ensure that individuals with disabilities have equal access and if they don't, the ADA makes it possible for an individual with a disability to file a discrimination suit against non-compliant businesses, and often a positive outcome occurs.

In 1985, my son was born with a developmental disability. Thanks to safeguards put into place by the ADA when he was just five years old, he is gainfully employed by an employer who has made accommodations for his specific needs. Because of the ADA my son is able to be a self supporting contributor to our community.

I understand that the ADA doesn't have the same impact on individuals who aren't personally affected by disability, but it's a law that benefits us all. I can remember a day when many places of business had steps, when doorways to public restrooms were so narrow one could barely walk through, when public transportation wasn't available to everyone. Equal access ensures that every person can enter an establishment and fully participate; not just the guy who pushes a wheelchair, but the mother pushing a stroller or a courier pushing a hand truck, as well.

While I can remember a life before the ADA was in place, I can't imagine life without it for the people I care about. I am grateful to every individual involved in drafting and enacting this life-changing piece of legislation, and had the express pleasure of once spending a day with someone who was instrumental in its birth.

Our nation might be celebrating the silver anniversary of the ADA today, but those with disabilities celebrate the ADA every, single day.

To learn more about the history of the ADA, check out the Disability Rights Education and Defense Fund's historical summary of the birth of the ADA, years before its 1990 consummation-The History of the ADA, A Movement Perspective by Arlene Mayerson. Arlene's detailed, behind-the-scenes account of the steps that led to the legislation we now know as the Americans with Disabilities Act is intriguing and eye-opening. As a society, we take so many things for granted and I don't think many of us consider the exhaustive steps that are sometimes necessary to bring about change. 

Wednesday, May 27, 2015

World MS Day, 2015

On this day, World MS Day, I'd like to pay tribute to my own personal roll model, my mother.

For over sixty years, Mom lived life as a person who had a disability, with both dignity and grace.

Although it took thirty years to receive a proper diagnosis, she had her first clinically identifying event with MS on Thanksgiving Day, 1953. Mom was just 17, a freshman in college, waking up that morning completely paralyzed on her right side.

I can't begin to imagine her devastation or fear--the uncertainty of what her life held.

I can't imagine my grandfather's heartache, having lost my mother's only sibling to a childhood disease and his young wife to cancer. What a terrifying time it must have been for him as a parent, unable to do a single thing to help his only remaining family member.

 Back then, MS was one of those illnesses shrouded in mystery and our tiny, rural hospital diagnosed Mom with Poliomyelitis and sent her home.

As often occurs with Polio, Mom eventually recovered her mobility and was able to return to her college activities, graduating with her class, despite missing a significant amount of class time.

Throughout her life, the severity of her condition ebbed and flowed. As her mobility began to decline, a string of additional mis-diagnoses were thrown at Mom. She was treated for a seizure disorder by a physician who mistook her clonus tremors as seizures; treated for low blood pressure by a doctor who couldn't find any other cause for the extreme heat prostration she experienced after being in the sun and had her knees operated on by a doctor who swore the foot drop she experienced was a knee joint problem.

In the autumn of 1983,  a new neurologist came to town. A physician who took one look at the puzzle pieces, ran one test and gave us the definitive diagnosis that had eluded my mother nearly 30 years.

Mom never reaped the benefits of the disease modifying drugs many MS patients have access to today, but thankfully, wonderful organizations like the National Multiple Sclerosis Society exist, organizations that are working relentlessly to find a cure for this disease that attacks young people in the prime of their lives. 

Hopefully, one day the mystery will be solved.

A guest at Mom's funeral told me they were sorry she lost her battle with MS. She lived a beautiful life, a happy, content life. For more than sixty years, she lived her life with MS.

She didn't lose the battle, she triumphed, despite her disease and I can't think of anyone who I admire more.

Tuesday, January 13, 2015

Curious? Just Ask!

One of my oldest, dearest friends has a child with neurofibromatosis. She's shared this information to help raise awareness about the disorder and I'm asking you to please pass it on.

I'm sure you've seen the pictures of Reggie Bibbs on the internet recently; or perhaps it was a picture of people wearing the awesome tee-shirts with a drawing of Reggie's face on them...

Want to know what it's all about?

Just ask!

The campaign to promote awareness of Neurofibromatosis has exploded. 

To help kick off their world tour, the Just Ask Foundation is running an ad campaign to promote awareness of Neurofibromatoses, genetically determined disorders of the nervous system that affect more than 100,000 Americans.

The Just Ask foundation is a 501(c)(3) entity that relies on the generosity of others to continue their work. You can help raise awareness by sharing their advertisements, or donating directly to their organizations. All donations are fully deductible.

I absolutely love this foundation's approach! One of the most demoralizing things we can do around someone who has a disability is to point, stare, whisper... or even worse, to teach our children it's wrong to ask questions when they want to understand why someone looks or acts differently. Most people would prefer you just ask, and many are very open about their disability. Ignorance begets pity, where knowledge begets compassion.

Want to know more about neurofibromatosis? Just Ask!