Understanding People with Disabilities is Key to Workplace Inclusion Efforts

My name is Mark Hanson. I work at Wellmark Blue Cross and Blue Shield as a trainer in our Operations division. I have been going through life for the past 32 years much like everyone else. I have laughed, cried and experienced some incredible highs and lows.

But I’ve never met another person who lives with Klippel-Feil syndrome (KFS) — the extremely rare condition I was born with.

Part of the 'Less Than Half' Percent

KFS is a birth defect that affects the development of the bones in the spine. People with KFS are born with abnormal fusion of at least two vertebrae in the neck. Common features may include a short neck, low hairline at the back of the head and restricted movement of the upper spine. According to the Children's Hospital of Philadelphia, most people with KFS will have either one or two of these characteristics, and less than half have all three.

I am part of that “less than half” percentage. My C2 through C7 vertebrae were fused together, resulting in my head having a slight tilt to the right side of the body.

This disability resulted in me receiving multiple shunts. The shunts release fluid from my brain and spinal column into my stomach to relieve the pressure the condition puts on my head and spine. I have two shunts that were surgically placed in me before I turned 1-year-old due to a secondary condition I was diagnosed with shortly after birth, called Hydrocephalus.

I was fortunate to have a mother who was a nurse. Having someone by my side to decipher medical jargon and help me learn more about my condition has been vitally important. When I see a doctor for the first time, I often have to spell the name of my syndrome and explain the intricacies because it is so rare.

Living with Limitations, But Not Limiting Life

Due to the disability, I’m not able to participate in certain activities. These include:

• Riding a roller coaster
• Riding in a bumper car
• Diving headfirst into a pool
• Jumping on a trampoline with anyone else
• Playing contact sports (I did play baseball, basketball and soccer, but I always had to be extremely careful)
• Doing anything that can knowingly cause whiplash

I have limitations, and will continue to have them throughout my life, but there are experiences I would have never dreamed of doing if it weren't for my supportive and loving parents.

A rule my parents had was that my brother and I had to be in at least one extracurricular activity. I tried non-contact sports and took piano lessons for a while, but then decided I would take up singing.

Their support helped me be able to perform on three continents, in more than 10 countries, and learn to sing in more than a dozen languages. Singing made me feel comfortable in my own skin.

How One Conversation Changed My Tune About My Disability

As a child, living with a physical disability was challenging. I always knew I was different, and that led to bullying. Classmates would put their shoulders up to their head to make fun of the way I looked. Knowing that everyone is looking at you can be an unsettling feeling.

The fear of being defined by my disability faded away in high school when I received a college scholarship through the Iowa Vocational Rehabilitation Services (IVRS). The IVRS helps with professional development for people with a disability.

When I told my close group of friends I received the scholarship, I was floored. One of my friends asked, "That is a scholarship for people with disabilities, right? So, why did you get it?"

That day has stayed with me for years. The feeling that the people you are closest to see you for just being you — and not your differences — was a huge milestone and major change in my life.

Since that point, I have welcomed conversations and questions about my disability. I know I’ll probably never meet someone else with KFS, and I love teaching someone more about it.

Two years ago, I became a member of Wellmark’s Inclusion Council so I could continue to be an advocate for diversity and inclusion at work and discover new ways to learn about, appreciate and celebrate our differences.

If you see me and want to know more, just ask! Having someone genuinely interested in learning more about me brings me so much joy.

Disability can come in all different forms, and some come with more complex challenges than others. Those challenges can make it incredibly difficult to have discussions about disability, but my hope is we can break down those barriers and be more comfortable having open conversations.

Greater Des Moines (DSM) welcomes diverse talent to the region. As one of the fastest growing business communities, inclusion and attracting diverse talent in the workplace is a key strategy of the Greater Des Moines Partnership. Learn more here.