SOCIAL INSENSITIVITY is endemic to the lives of people with invisible disabilities that affect their daily lives, who are likewise deprived of outer symbols to signal their condition, like designated disability seating, parking and toilets. Cultural stigma has prevented people from identifying as disabled.
“The compounded effects of persistent prejudice and unfair policies have resulted in deep economic and other forms of inequality that keep people with disabilities at a severe disadvantage” reports the Ford Foundation Center for Social Justice, a $16 billion international philanthropy with offices in the United States and ten regions around the globe.
In 2021, the foundation launched the first-ever U.S. Disability Rights Program, with input from about 200 disability leaders.
The Disability and Health Data System (DHDS) by the Center for Disease Control and Prevention reports that 61 million, or 13% of people in the United States have a disability. Of that, approximately 10%, or 6 million have an invisible disability. 80% of disabilities are non-visible. The disability community is massive and incredibly diverse.
Illustration courtesy of Center for Disease Control and Prevention.
Illustration courtesy of Center for Disease Control and Prevention.
Just because you can't see it, doesn't mean it's not there
The word ‘disability’ evokes images of wheelchairs, walkers, ramps, grab bars and other mobility support devices. However, not all disabilities are visible. Some disabilities are hidden and beyond skin deep. Just because you can’t see it, doesn’t mean it is not there. Because it is unseen and without being able to see an indicator, like a wheelchair or walker, people can dismiss the effects of a medical condition.
This year marks the 34th anniversary of the American with Disabilities Act that was signed into law by George H. W. Bush on July 26, 1990. It protects the rights of people with disabilities, visible and non-visible. The ADA defines disability as any physical, mental, or neurological condition that heavily impacts a person’s movement, senses, or activities.
For a quick overview of the ADA, read “The American with Disabilities Act: A Brief Overview.”
What is an invisible disability?
Disabilities come in many forms and not all of them are immediately visible. Sunflower Hidden Disabilities recognizes over 900 non-visible disabilities, They are wide in range and include, but
not limited to:
- Autism
- Lupus
- EpilepsyDiabetes
- Diabetes
- Depression
- Schizophrenia
- Attention deficit hyperactivity disorder (ADHA)
- Post-traumatic stress disorder (PTSD)
- Asperger Syndrome
- Multiple sclerosis
- Dementia
- Bipolar disorder
- Primary sclerosing cholangitis
- Chrone’s disease
- Celiac disease
- Graves disease
- Rheumatoid arthritis
- Traumatic brain injury
- Stroke
- HIV/AIDS
Just because you can't see it, doesn't mean it's not there
Non-disabilities are unpredictable and disruptive which can throw a wrench in your plans, and often interfere with daily activities.
While some conditions are readily apparent, others lurk beneath the surface, often misunderstood or overlooked by society at large, hidden disabilities can be just as debilitating as their more visible counterparts, yet those who live with them often face unique challenges during
daily life, including skepticism, lack of accommodation, and prejudice.
Living with an invisible disability like myself, there are factors that trigger autoimmune flare-ups.
They can be mild or severe such as stress, diet, allergies, pregnancy, cold or infection, pharmaceutical medication, seasonal changes, weather, exercise and environmental toxins.
During a flare-up, the immune system attacks the body and my symptoms may include fever, chills, abdominal pain, nausea, joint pain and muscle soreness, swelling, weight gain, headaches, hair loss, loss of appetite, blurred vision, digestive issues, and anxiety.
“What does a disability look like?”
On the outside, I’m the picture of health. But, beyond skin deep, an underlying condition rules me. Fortunately, I don’t look like what I have been through. When I tell people what I go through, they say, “Wow, you look great. You don’t look like you have a disability!” I ask, “What does a disability look like?”
I was diagnosed in 2014 with Primary Sclerosing Cholangitis, a rare autoimmune liver disease that is unseen and commonly undiagnosed or misdiagnosed, A routine blood test showed abnormal liver functions following months of abdominal pain, jaundice (yellow eyes and skin), nausea, fever, chills, diarrhea, and weight loss. An MRI (Magnetic Resonance Imaging) revealed I had gallstones, but my gastroenterologist noticed the bile ducts in my liver were inflamed and scarred which prompted my doctor to do a liver biopsy. When results came back, he said I needed a liver transplant one day.
It’s been ten years since my diagnosis filled with many hills and valleys. With the guidance of my doctors, I am able to live a normal life, however I have to maintain monthly lab work, clinic visits and abdominal imaging as needed for close monitoring of my liver functions. A balanced diet, regular exercise, stress management, and mindfulness are key to the slow progression of the disease.
Doctors, therapists, friends and family have been very supportive and I have an outstanding team of doctors at Mount Sinai Icahn School of Medicine and North Shore LIJ where my gastroenterologist, Dr. Larry S. Miller is the Chief of Gastroenterology and Professor at the School of Medicine at Hofstra University, my Alma Mater. Ultimately, healing and strengthcomes from keeping a positive mind and my faith for “God’s strength is made perfect in weakness.”
I am grateful for the opportunity to go back to school, serve as a student leader and advocate for students with disabilities as the University Student Senate (USS) Vice Chair for Disability Affairs at City University of New York (CUNY).
You wouldn’t know I have a disability unless I tell you. I wear a Hidden Disability Sunflower Lanyard & ID Card that discreetly indicates I have a hidden disability and may need support, a little extra time and understanding. It helps with the stigma that I experience everyday when people look at me and see a healthy-looking person–not a PSC warrior–-dealing with an autoimmune liver disease and total joint replacement in both hips.
The Sunflower is a globally recognized symbol for non-visible disabilities that is recognized by many sectors including Airport, Transportation, Education, Healthcare and the U.S. Department of State, the first Federal Agency Headquarters to launch the Hidden Disabilities Sunflower program.
My disability is my superpower
I see my hidden disability as a strength, not a setback. It’s made me a staunch advocate and voice for people with disabilities - visible and hidden, and deepened my understanding and empathy for other people.
My disability has strengthened my willpower, and cultivated the positive, optimistic outlook needed to overcome challenges and foster personal growth. Mindfulness is extremely important.
It helps me to stay calm to perform creatively and effectively, even in high-pressure workplaces and other stressful environments. Most importantly, embrace challenges and struggles because a calm sea never made a skilled sailor.
It keeps me motivated to work on staying healthy, and being the best I can be. Healthy eating habits, exercise and mental health have a big impact on my condition. I eat lots of fruits and vegetables, salads, salmon, and make fresh juice every day. Resisting temptation is my new normal, especially since my family is from Jamaica where jerk chicken, oxtail, and rice & peas are popular dishes at dinnertime.
A commitment to listen, learn and do better
Acknowledging the presence and validity of invisible disabilities is a key component of an awareness effort. In addition, many people with invisible disabilities deal with critical judgements and discrimination due to lack of understanding and information.
“By listening and learning with humility, we’ve come to realize that disability is even more deeply intertwined with the broader cause of social justice that we initially thought”, said Darren Walker,
President of the Ford Foundation and author of “No Equality Without Everyone.” Walker is listed among TIME’s “100 Most Influential People” and Inside Philanthropy’s Philanthropy Leader of the Year in 2023.
However, more work needs to be done. While people with disabilities must be the vanguard of the fight and awareness campaign, social justice organizations, public advocates, schools and universities, corporations and government agencies should serve as essential allies.
With a combination of education, understanding, support and new behavior, we can broaden our views on disability, help school faculty and employers learn the tools they need to break down the barriers, and expand opportunity within society so that everyone can equally contribute and benefit.
Communication and information help reduce stigma, misunderstanding, discrimination and other difficulties that people with disabilities (visible and non-visible). encounter on the job, in school and in their personal life. It can reduce stigma and demonstrate diversity, equity, and inclusion.
I hope discussing my experience will motivate others and help boost understanding, sensitivity and awareness. Be kind, for everyone you meet is fighting a battle you know nothing about.
Falana Fray is a graduate student at the Craig Newmark Graduate School of Journalism at CUNY and Vice Chair for Disability Affairs in University Student Senate (USS) at City University of New York. Fray is a native of Montego Bay, Jamaica and a graduate of Hofstra University in Hempstead, Long Island where she earned her Bachelor’s Degree in Political Science. She lives in Queens, New York with her dog Marley.