An Inspired conversation with Hannah Setzer

We’re all different – whether you have disabilities, scars, tattoos, light skin, dark skin and other outward differences or not. The point is that some of our differences are visible, and some are not.   As humans, it’s natural for us to notice our differences, but for those with visible disabilities, take a moment to consider what it is like to have them held up and held against you.  It is the impact of being seen as different, the assumptions attached to difference that can leave a lasting effect on those receiving end of the interaction.

There is much to be done to educate the community on challenging discrimination and stigma surrounding those who live with visible differences, and we can all play our part to learn more, and to become advocates for greater awareness and acceptance.

Hannah Setzer lives with both visible and hidden difference and does just that.

Join me and get to know Hannah in her own words.

  Tell us about yourself

My name is Hannah Setzer. I’m 28 and live in Richmond Virginia. My house is currently a zoo!  I live with my loving husband Brandon, a 15-year-old foster daughter and a 12 year old foster son, 2 dogs, 1 cat, and 1 hedgehog!
I’m a Disability Rights Advocate at the disAbility Law Center of Virginia, a nonprofit law firm that advocates and assists people of Virginia that have disabilities. I love my family, love my job, and love cruising around in my gold minivan blasting old school hip hop.

What has been your journey of disability?

I was born with a rare medical condition called Cystic Hygroma, which affects my lymphatic system, particularly in my head and neck. I have had over 60 surgeries throughout my lifetime. I eat exclusively through a feeding tube in my stomach, and breathe through a tracheostomy tube in my neck.

      

Are there things about you that people misunderstand because of your disability?

People assume because I look different I’m not intelligent, not capable, not worthy of the things I’ve worked hard in life to achieve.

People assume because I look different I’m not intelligent, not capable, not worthy of the things I’ve worked hard in life to achieve.

Who inspires you?

The disability and medical condition community on Instagram is like nothing I’ve ever known. I am so grateful for them. Before Instagram I literally had never met anyone else around my same age with the same medical condition I have. I learn new things every day from this community and it is incredible. I feel very lucky to get to talk with so many parents of children with feeding tubes or tracheostomy tubes and hopefully give them hope that their kiddos are perfect and will have great lives.

Which three words would you use to describe yourself?

Brave, Confident, Grateful

What is one thing, experience or person you have had that completely changed your life?

I’d say my husband Brandon. He is so self-assured and confident. I’ve always been confident in who I am and what I look like, but since being with him that confidence has sky-rocketed. He’s really great at giving me positive words of affirmation, but I think getting to live life with him and see his attitude of being confident every day has really helped me.

I used to be timid to talk to strangers or stand up for myself since they may not understand me 100% at first with my speech, but Brandon is not afraid to speak his mind and I have really come out of my shell in that regard too. I would not be the advocate I am today if it wasn’t for him. I am so much more bold, outspoken, and fearless because of him.

We may not look like everyone else, or have the same abilities but we all have hearts.

 

What’s one thing about you that surprises people?

That I’m really funny. That is a bit of a humble brag, but I really am funny and people are always surprised by it.

For what are you most grateful today?

Everything. I’m so grateful for my husband, these foster kids we get to love on, a job I love, and a really great bed to fall asleep in every night.

Knowing what you know now, what advice would you give your 18-year-old self?

Seriously, just wait. Life is going to get SO MUCH BETTER and so much more fun.

Do you have a funny story involving or relating to having your disability you can share?

Not that I can think! People are always really surprised that I can figure out a way to eat wherever I am. I’ve hung my gravity food bag in trees, off football goals, the backs of airplane seats, and off roofs before. Hey, a girl has to eat!

Is there something that you would like people to know about you or about people with disability that they might not know?

People with disabilities or medical conditions are just like everyone else. We may not look like everyone else, or have the same abilities but we all have hearts. We all want to be known and loved. We all have desires and interests. This shouldn’t be new information to anyone but you’d be surprised when people say, “he’s in a wheelchair how could he be interested in working out!” (That’s just an example of course)

So many people with disabilities or medical conditions think or assume that finding romantic love will never happen to them, but like I said before, we all have hearts. It just may take some time to find someone who you can connect with on a heart level.

Is there some advice that you wish you had been shared with you that might have made a difference in your life journey,  that you would like to share with other women with disabilities?

You are strong. You are beautiful. You are kind. You are confident. You are radiant. You may have extreme differences, like I do, but don’t let that stop you from living the life you want to live. Rock that hair-do. Rock that outfit. Don’t be afraid to throw your head back when you’re out with your friends and laugh. Find your tribe and don’t let them go. (this advice applies to ALL women to be honest!)

 

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