Imagine going somewhere with friends. They give a password and are granted access. When you give the same password, you’re told it’s wrong. That’s the feeling disability rights activist Emily Ladau wants to impart.

“Frustrating, right? But that’s often the reality of being disabled. We’re shut out or excluded because the world was not designed for us,” she said, reading an excerpt from her book “Demystifying Disability: What to Know, What to Say, and How to be an Ally.”

Ladau shared her experiences alongside “A Face for Picasso” author and Pacific alumna Ariel Henley ’19 during University of the Pacific’s virtual event “Unpacking Ableism” held Nov. 9.

Dr. Rhonda Bryant, associate vice president of student well-being and dean of students, moderated the conversation hosted by the Office of Services for Students with Disabilities (SSD). 

From shame to advocacy

It’s a conversation Ladau has been having for most of her life. She was born with Larsen syndrome, a genetic physical disability.

“I was the only kid in my mainstream public school who had a visible, physical disability,” Ladau shared.

It wasn’t until she was older and spent time with other disability advocates that her perception changed. “Oh, you mean I have permission to be proud of who I am?” she remembers thinking.

Henley’s experiences go back to birth as well. She grew up with a facial disfigurement due to a rare disorder called Crouzon syndrome which caused bones in her face to fuse prematurely.

“By the time I graduated from high school I had over 60 surgical procedures,” she said. “Some of it was medically necessary; some of it was simply because I wanted to look more normal.”

The surgeries were only part of the challenge. Henley remembers being marked down in school for missing class due to medical procedures.

“What colleges would I have gotten into, or what scholarships could I maybe have been eligible for had my grades not been impacted by me having to miss school?” she wondered. 

Like Ladau, meeting other people with disabilities and writing about her experiences changed her mindset and sparked a passion to promote disability rights and accessibility.

Overcoming ableism

Ladau says she wants people to understand that every issue is a disability issue and accessibility can take many forms: quiet rooms, Braille materials, flexible work hours, and sign language interpreters (live captioning and ASL interpreters were provided for the virtual event.)

“When disabled people can fully use and experience a product or service, that’s accessibility,” Ladau explains.

Both women say they don’t need sympathy; they need people to see them as a whole person, not just someone with a disability, and to have a little understanding.

“If a professor provides an accommodation without questioning me, without making me feel guilty for it by saying, ‘I hear you, I see you, and I know that I can do this to support you,’ to me, that's what empathy looks like,” said Ladau.

“Listen to people. Listen to what they say they need. Just trust that people know what's best for themselves,” Henley added.

Ladau hopes the books and conversations are a starting point that will lead to no longer needing a secret password to access everyday experiences.