March is National Disability Awareness Month. It is a time to celebrate the contributions of those with disabilities, including people who also have chronic conditions like Turner syndrome (TS). While TS is not in itself a disability, some individuals with the condition can also have physical or cognitive disabilities. The Turner Syndrome Foundation (TSF) would like to introduce you to Donna Russo, an inspiring woman, dancer, actor, and activist who is living–and thriving–with TS and also a rare form of muscular dystrophy.
Note: This post was originally published in October 2021 and has been updated.
National Disability Awareness Month
On February 26, 1987, President Ronald Reagan officially declared Proclamation 5613, making March National Disability Awareness Month (NDAM). The proclamation called for people to provide understanding, encouragement, and opportunities to help persons with disabilities lead productive and fulfilling lives. Many states now recognize NDAM every March.
Everyone wants and deserves to enjoy life and feel productive and secure. But in March, we take extra steps to raise awareness about the supports and rights of the people with disabilities and to celebrate their contributions to our communities and society as a whole!
Also, each March, the National Association of Councils on Disabilities (NACDD) and its partners work together to create a social media campaign for National Developmental Disability Awareness Month (NDDAM), which highlights the many ways in which people with and without disabilities come together to form strong, diverse communities.
NDDAM seeks to raise awareness specifically about the inclusion of people with developmental disabilities in all facets of community life, as well as awareness of the barriers that people with such disabilities still sometimes face in their communities.
People with Disabilities in the U.S.
The Americans with Disabilities Act (ADA) defines a person with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activities. This includes people who have a record of such an impairment, even if they do not currently have a disability. It also includes individuals who do not have a disability but are regarded as having one.
The ADA makes it illegal to discriminate against an individual because they have, have a record of, or are regarded as having a disability.
According to the U.S. Centers for Disease Control and Census Bureau, as of 2019, one in four (25%) of U.S. adults and over 3 million children (4.3% of those under 18) lived with a disability. The most common types of disabilities are:
- mobility (serious difficulty walking or climbing stairs);
- cognition (serious difficulty concentrating, remembering, or making decisions);
- hearing (serious difficulty hearing);
- vision (serious difficulty seeing);
- independent living (difficulty doing errands alone); and
- self-care (difficulty dressing or bathing).
Not all disabilities are visible or readily apparent. In simple terms, an invisible (or hidden) disability is a physical, mental, or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities. Unfortunately, the very fact that these symptoms are invisible can lead to misunderstandings, false perceptions, and judgments.
Donna Russo's Story
During this National Developmental Disability Awareness Month, we would like to introduce you to TS butterfly Donna Russo and her inspiring story.
I was diagnosed with TS at about 10 years old. My stature was always short, and as an adult, I am 4’5” tall. Size was always a concern for my parents, and they looked into possible reasons when I was between four and five years old. It took a while to get a diagnosis.
As a child, I had many ear infections, which caused a hearing loss in my left ear. My parents didn’t know this could be related to TS; they thought my hearing problem had been caused by the mumps. We later found out that hearing problems are common in individuals with TS.
Math and spatial relationships/sequencing were very hard for me. I am horrible with directions, and I had to ask for special help with math. This occurs with many, but not all, people with TS. I strongly suggest not hesitating to ask for help with any school subjects you or your child may be struggling with.
When I was in my late 40s, I was diagnosed with Facioscapulohumeral muscular dystrophy (FSHD). This condition is a form of muscular dystrophy that most commonly causes progressive weakness of the face, upper arms, and shoulder regions, though symptoms can also affect the legs. (Note: FSHD is not considered a developmental disability in Donna’s case.)
The only thing that could have given me a clue that I had FSHD was that, when I was a little girl, I had to try to whistle as a Christmas doll in a play. I couldn’t do it, as hard as I tried. I later learned that FSHD can affect facial muscles. As a little girl, I just thought I couldn’t whistle, and that was OK. The disease is caused by degeneration of muscle due to a missing chromosome in the person’s genes, much like TS. To learn more about FSHD, visit the FSHD Society‘s website.
It is important to note that TS and FSHD are not related. Prior to being diagnosed with FSHD, I had danced since I was 10 years old. I was a serious student of ballet, jazz and modern dance. I graduated from Mercyhurst University in Erie, Pennsylvania with a BA in dance. After college, I taught dance and aerobics classes in Philadelphia and Los Angeles.
I have also toured with shows such as “Alvin and the Chipmunks and the Magic Camera,” in which I played Alvin, as well as with modern dance companies. I have enjoyed playing many characters on film and television, such as ninjas, elves. aliens, dolls, robots, monsters, and also regular roles. With the character roles, my smaller size was to my advantage.
"Donna on the Go"
One of the projects I am most proud of is our YouTube web series, “Donna on the Go,” which was created and executive produced by Peggy Lane. The show is a lighthearted view of the challenges that people with disabilities face. It conveys a poignant message through laughter.
Peggy got the idea for the series one day when we went for a Target run. I have so much trouble using the electric cart. I’m petite, and my weight doesn’t register, so I have to sit on the edge of the seat. I keep bumping into things, and my cart doesn’t move sometimes when I press the button. It is so hard to grab things from the shelf when they’re up high. Peggy decided to film this to make me laugh.
When we got home, we were hysterical. She thought we were onto something, and we were. Peggy is very talented, and she made the camera move when I came down the aisle. It turned out amazingly.
(Click to see full-size images. Hover to see captions.)
We have an episode called “Turner” that is devoted to TS. Jennifer Woods, my close friend and fellow TS butterfly, is in this episode, as well. You can learn more about “Donna on the Go” on the official website, Facebook, Twitter, and Instagram.
What I Want People To Know About Living with TS & a Disability
People should understand that every individual with TS has different challenges. You can live a full and productive life with TS. We are teachers, dancers, lawyers, doctors, healthcare professionals, and much more.
People with disabilities have all kinds of jobs and do many things in real life. Our disability doesn’t define us; it is just part of who we are. Try to adapt to the changes that happen in life. Because of FSHD, I have learned to dance differently. Since dance is such a passion of mine, I adjusted the way I move. I dance the way I can, and for me, it’s healing. I still dance, and I will continue to as long as I can.
During NDDAM and all year, my hope is that we can make more people aware of and empathetic towards people with disabilities. We are not helpless, but you can ask us if we would like assistance. We have rich, unique life experiences and can bring so much to the table.
What is the definition of disability under the ADA?, ADA National Network
Childhood Disability Rates, U.S. Census Bureau
FSH Muscular Dystrophy, Johns Hopkins Medicine
Written by Donna Russo and Susan Herman, TSF Blog Coordinator. Edited and designed by Susan Herman.
© Turner Syndrome Foundation, 2023