Saturday, June 27, 2015

Remembering Helen Keller

Activist and author Helen Keller became deaf and blind due to a high fever as a toddler. After learning sign language from her teacher Anne Sullivan, Keller was the first deaf and blind person to be awarded a bachelor's degree in the United States. Today, June 27, is unofficially known as Helen Keller Day (the anniversary of her birth in 1880), as proclaimed by President Jimmy Carter in 1980. Having led a productive life despite her challenges, Helen Keller is an inspiration for people with and without disabilities. To learn more about her and the commemoration of her birthday, go to http://www.biography.com/people/helen-keller-9361967#social-activism and http://www.timeanddate.com/holidays/fun/helen-keller-day.

Thursday, June 25, 2015

Breaking Down Florida's Budget



Yesterday, Florida Governor Rick Scott signed the 2015-2016 Keep Florida Working Budget. One of the budget highlights is its impressive investments of $1.2 billion into the Agency of Persons with Disabilities (APD). This includes over $40 million for the purpose of removing more than 2,000 individuals from the APD waiting list into the iBudget Florida Medicare waiver system. The budget is also allocating $1 million for job placement and training for people with developmental disabilities. To see the rest of the Keep Florida Working Budget, go to https://drive.google.com/file/d/0B1_Jq98oofxeVVdsU1AtWHltdUE/view.

I’m pleased to see how much consideration is being given to people with disabilities. However, along with the budget is a lengthy list of vetoes, including one for the Adults with Disabilities Pilot Program. This is a disappointment for those who would’ve benefited from the program. You can see the veto list at https://drive.google.com/file/d/0B1_Jq98oofxeTmhJS19fdTk4b0E/view.

Sunday, June 21, 2015

A Tribute to My Father

I'd like to take this opportunity to express appreciation for my father Marty (pictured with me below), who's embraced me, disabilities and all, from day one. Below is a letter I wrote for him. Happy Father's Day!



Dear Dad,

Mom told me you were in the delivery room with her when I was born 29 years ago. She also said you were so excited to see me again shortly after my birth, you went to the hospital nursery and held me before she did. I can only imagine how you felt when you were told I had a rare genetic disorder and might not live to see my first birthday. Considering some fathers of children with disabilities abandon their families, the fact you stayed with Mom and me is commendable and appreciated.

I’m impressed you’ve been working as a mechanical engineer for the same company for over 30 years. This has enabled you to financially provide for all of my needs. Your work ethic inspires me to do my best at my job. Despite your full-time work schedule, you’ve always been actively involved in my life. When not at work, you’ve helped Mom take care of me, no matter how messy I get. During weekends when I was a baby, you got me out of bed and fed me breakfast so Mom could sleep in. Getting out of bed along with Mom upon my call, you tended to me whenever I didn’t feel well at night.

Here are more reasons I’m thankful to have you for my father: You read bedtime stories to me when I was in preschool; this led to my love of reading and writing. You helped me with my math homework and science projects. You played video games with me for hours. You held my hand when I was put to sleep in the operating room before 15 surgeries and spent days with me in the hospital. You made our house more handicapped accessible by making modifications such as a new sink and walk-in shower. You attended many school functions. You took me out on father-daughter dates such as dinners at restaurants and church events. You took Mom and me on memorable vacations, the latest one being in North Carolina’s Outer Banks.

One family value you instilled in me at an early age is a strong faith in God, our Heavenly Father. You took me to church and religious education classes every week. This has helped me tremendously in dealing with my disabilities. I also learned how to be sociable by watching you interact in a friendly manner with everyone you meet. I appreciate how you keep yourself fit through exercise so you can continue to lift and carry me (I know I’m not as light as I used to be). To borrow a term used by a fellow writer, you are one of my biggest encouragers, motivating me to achieve my goals despite my limitations.

Over the years, several people have said I look like you. I consider this a compliment. I’m proud of my Irish heritage from you. I hope this letter gives you an idea of the undeniable impact you’ve had on my life. Thank you very much for everything. Happy Father’s Day, and here’s to many more!

                                                                                    Love,

                                                                                    Ashley


Friday, June 19, 2015

Jean Vanier: Disability Advocate

I wanted to share an article I just read about Catholic theologian and humanitarian Jean Vanier, who was recently awarded the Templeton Prize for his work for people with disabilities. I hadn't heard of Vanier before, so I'd like other people to know about him. To learn more about Vanier and his accomplishments, go to http://www.huffingtonpost.com/2015/06/19/jean-vanier-templeton-prize-disability_n_7607382.html?utm_hp_ref=world&ir=WorldPost.

Saturday, June 13, 2015

Promoting My Life Story at the Family Cafe



Welcome to UnabASHed by Disability: The Blog, an extension of my autobiography published in October of 2014. In this blog, I intend to share my experiences with readers while providing information. To give you a little background, I was born 29 years ago with a rare genetic disorder called campomelic syndrome. The symptoms of this condition include deformed bones and weak muscles, so I’ve used a wheelchair and dealt with health issues all my life. For more information about campomelic syndrome, go to http://ghr.nlm.nih.gov/condition/campomelic-dysplasia.

Nowadays, I work part-time at home as a quality analyst for J.Lodge, a call monitoring company that employs mostly people with disabilities. (When calling a company’s customer service department, you’ve probably heard someone say, “This call is being monitored for quality purposes.” This is where I come as a quality analyst.) I am also a director-at-large for the Space Coast Writers’ Guild, and I plan to write another book. In the meantime, I take every opportunity I can to promote my autobiography, which is available on Amazon and Kindle.

A week ago, I promoted my book as a micro-enterprise along with many companies and organizations in the 17th Annual Family Café’s Exhibit Hall at the Caribe Royal All-Suite Hotel and Convention Center in Orlando. The Family Café, a three-day conference for people with disabilities and their loved ones, includes various workshops, entertainment, and the Governor’s Summit on Disabilities where relevant political issues are discussed. The first photo below shows the cover of the 17th Annual Family Café program.

Sitting for five hours in my own booth (see second photo below), I sold five copies of my autobiography, which was my goal. However, the highlight of my day was meeting a three-year-old girl named Grace who has campomelic syndrome like me. I wasn’t expecting to see anyone else with campomelic syndrome at the Family Cafe because it occurs in just one in 40,000 to 200,000 people. With her appearance and mannerisms, Grace reminded my parents and me so much of myself when I was little. Her mom said meeting me gave her hope for her daughter. That is one of the reasons I wrote my autobiography: to give hope to special needs kids and their parents.

To learn more about the Family Café, go to www.FamilyCafe.net. The next conference is scheduled for June 10-12, 2016, at the Hyatt Regency Orlando. I’m already looking forward to it. Thank you for reading, and see you next time!