Spotlight: Greta Thunberg

Since it's the end of 2019, this is the last opportunity to write about TIME's Person of the Year, environmental activist Greta Thunberg. In August of last year, Thunberg (who turns 17 on Friday) initiated school strikes by students in Stockholm, Sweden, and beyond in protest of inaction on climate change. She also encouraged her parents to make lifestyle choices like giving up air travel to benefit the environment. Thunberg has a form of autism called Asperger's syndrome as well as OCD, but she expresses herself in an articulate manner when giving speeches. Besides being selected TIME's youngest individual Person of the Year, she has received other honors such as the Rachel Carson Prize. Although not everyone agrees with her views, Thunberg should be commended for having the courage to stand up for what she believes in. For more information, go to https://time.com/person-of-the-year-2019-greta-thunberg/. Happy New Year, readers!

Greta Thunberg

(image via newrepublic.com)

Season's Greetings

I'm writing from a handicap accessible suite at a hotel outside of Buffalo, New York. I'm visiting relatives on both sides of my family this week. I hope you're with the people you love. Thank you for reading my blog all year long, and I wish you a happy holiday season!

Event: Autism & Related Disabilities Town Hall Symposium

The Autism & Related Disabilities Town Hall Symposium will take place from 10:00 A.M. to 12:00 P.M. on Tuesday at the Space Coast Health Foundation in Rockledge. At this event, there will be a discussion about how to strengthen services and develop new ones. The symposium will focus on the following areas of concern: transportation shortage; employment, training, and programs for people with disabilities over age 22; sub-minimal wages; lack of housing options; mental health programs and supports; respite, after-school, and summer programs for kids and teens; and Medicaid issues related to services and treatments (ABA and speech and occupational therapies). Political leaders, medical professionals, educators, business leaders, and recreation experts will also be in attendance at the symposium, where refreshments will be served. For more information, you can go to Brevard Town Hall Disability Advocacy's Facebook page.

Note: I'm unable to attend the symposium due to work obligations. However, I was invited to speak about the impact of disability legislation on my life. My remarks were recorded and will be aired at the symposium.

My speech recording session

(Photo by Tracy Jensen-McGrath)

Pope Francis's Message About People with Disabilities

Last Tuesday, December 3, was the International Day of Persons with Disabilities. On that day, Pope Francis released a message that emphasized the dignity of the disabled. He said while the lives of individuals with handicaps are better than they used to be, a change in attitude toward their challenges is needed for further improvement to take place. As a Catholic with disabilities, I'm pleased the Pope took the time to remind people how to treat those with impairments. To read more about what he had to say, go to https://www.vaticannews.va/en/vatican-city/news/2019-12/pope-make-the-world-more-human-by-guaranteeing-the-dignity-of-t.html.

Pope Francis greets people with disabilities.

(image via vaticannews.va)

Spotlight: Sydney Mesher

The Radio City Rockettes recently returned to Radio City Music Hall in New York for the holiday season. One of them, Sydney Mesher, is the first member of the dance company to have a visible disability. She was born without a left hand due to symbrachydactyly, a condition in which limbs don't fully develop before birth. Originally from Portland, Oregon, Mesher has been dancing since age three and saw the Rockettes perform when she was in middle school. She will be doing high kicks and other dances as part of the Christmas Spectacular show at least twice a day until January 5. For more details on this story, go to https://www.kptv.com/news/portland-woman-born-without-left-hand-making-history-with-the/article_5696b3fa-1112-11ea-a9e1-cbd0bad18bd8.html.

Sydney Mesher

(image via oregonlive.com)

November: Prematurity Awareness Month

November is Prematurity Awareness Month with November 17 being World Prematurity Day. A baby shouldn't be born sooner than 37 weeks into the mother's pregnancy. Premature babies tend to stay in the hospital for a longer period of time due to health problems. According to the latest statistics, being born too early happens in one out of every ten births. The prematurity survival rate is higher than it used to be; however, an early birth can lead to intellectual and developmental disabilities such as attention deficit hyperactivity disorder and cerebral palsy. In addition to medical services, there are early intervention and special education services for children who were born prematurely. For more information, go to https://www.marchofdimes.org.

The March of Dimes logo

(image via marchofdimes.org)

Eastern Florida State College to Host Film Screening

A screening of the 2015 documentary "How to Dance in Ohio" will take place from 6:00 to 8:00 P.M. on Tuesday, November 19, in the Simpkins Fine Arts Center at the Cocoa campus of Eastern Florida State College. This event is free and open to the public. Directed by Alexandra Shiva, "How to Dance in Ohio" follows young adults on the autism spectrum as they practice their social skills during the 12-week period leading up to a spring formal dance. The film focuses on two teenage girls and a 22-year-old woman with autism. HBO Documentary Films in association with Gidalya Pictures and Blumhouse Productions received a Peabody Award for this movie. To get more information and/or stream the movie, go to https://www.hbo.com/documentaries/how-to-dance-in-ohio.

Movie poster

(image via imdb.com)

Spotlight: Morgan Stickney

Morgan Stickney, a 22-year-old pre-med student and swimmer from Bedford, New Hampshire, recently had the lower part of her right leg amputated at Brigham and Women's Hospital in Boston, Massachusetts. Six years ago, Stickney broke her left foot, and a staph infection along with a rare vascular disease eventually led to the amputation of the lower part of her left leg. She wanted to swim at the 2020 Paralympic Games, so she moved to the Olympic training center in Colorado Springs, but then, she broke her right foot, resulting in the latest amputation. Stickney is the first person to undergo this experimental surgery on both legs. She is being fitted for prosthetics designed by MIT and receiving physical therapy at a rehabilitation hospital. Stickney, who maintains a positive attitude despite her setbacks, plans to compete at the 2024 Paralympic Games. For more details on this story, go to https://www.wmur.com/article/elite-swimmer-from-bedford-undergoes-second-experimental-leg-amputation-in-boston/29644734.

Morgan Stickney

(image via gofundme.com)

Raising Awareness of Painful Diseases in November

November is the awareness month for two conditions that can cause disabling pain: Dercum's disease and complex regional pain syndrome (CRPS). Dercum's disease, also known as adiposis dolorosa, is a rare disorder in which lipomas (painful growths of fatty tissue) can be found under the skin on a person's trunk, upper arms, upper legs, and other body parts. Other symptoms include weight gain, swelling, depression, lethargy, and confusion. Occurring most often in women aged 45-60, the cause of Dercum's disease is not known, but it could be a result of the lipomas' pushing on nerves. Treatment options are painkillers, corticosteroid injections, and surgical removal of lipomas around joints, but these are only temporary solutions. For more information, go to https://rarediseases.org/rare-diseases/dercums-disease/.

CRPS is a type of chronic pain in an individual's limb for more than six months after an injury or surgery. There may also be changes in skin color, temperature, and swelling in the limb. More common in women at a peak age of 40, CRPS may be due to damage to the peripheral and central nervous systems. There are two types of CRPS: CRPS-I without a confirmed nerve injury (formerly known as reflex sympathetic dystrophy or RSD) and CRPS-II with a confirmed nerve injury (formerly causalgia). Treatment options include rehabilitation and physical therapy, medications, and sympathetic nerve block. To learn more, go to https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet.

 

The Dercum Society and RSDS Association logos

(images via dercums.org and rsds.org)

Spotlight: Agency for Life Transformations

Last month, I met Diane Dickson, a job coach and co-founder of Agency for Life Transformations (ALT) in Titusville. ALT is a nonprofit that helps people with disabilities reach their full potential in life. The agency's programs introduces participants to small business management and teaches them independent living skills. There is a training class for parents on how to help their children become self-advocates. ALT also provides employment, transition, and nutritional counseling services. The organization sells Inspira Spirulina, a superfood in the form of blue-green algae full of nutrients. Proceeds go to self-development and employment programs for people with disabilities. For more information about Agency for Life Transformations, go to https://www.altsuccess.org/.

As shown on its website, one of ALT's success stories is Candace Whiting, a motivational speaker, Special Olympics reporter, and dancer with Down syndrome. My mother and I had the pleasure of meeting her and her parents Stephen and Carol last Thursday; Diane was also present. Candace said she'd like to write a book about her life, so I gave her some advice about that. (Copies of my autobiography UnabASHed by Disability, which was published five years ago, can still be purchased at Amazon; click on the link in the right column of this web page.) Candace and Stephen, a personal trainer with an education background, run Great Life Unlimited, a lifestyle consulting company that also seeks to assist people with disabilities in leading fulfilling lives. To learn more about the Whitings' company, go to https://www.greatlifeunlimited.com.

Agency for Life Transformations logo

(image via altsuccess.org)

Exposing Invisible Disabilities

Last week (October 13-19) was Invisible Disabilities Week. An invisible disability is an impairment that isn't obvious upon looking at a person with one. Just because the person doesn't use an assistive device like a wheelchair or walker doesn't mean he or she isn't limited in movements or senses. A hidden disability sometimes leads to misunderstandings or premature judgments by others. For example, a woman might be puzzled after seeing a man park in a handicap accessible parking space and get out of his car without a problem. It's possible the man parked in the handicap spot because he has a medical condition that makes walking long distances difficult, if not impossible. (Of course, a driver with a disability should have a handicap placard or license plate.) Invisible disabilities include symptoms such as severe pain, fatigue, or a mental disorder. For more information, go to the Invisible Disabilities Association website at invisibledisabilities.org.

2019 Invisible Disabilities Week logo

(image via invisibledisabilities.org)