From Assumptions to Advocacy: How Bias and Discrimination Led to My PhD Journey

“You have Stargardt’s Disease. There’s no treatment; you’ll lose your eyesight, but we don’t know how quickly.”

These words changed my life. Everything I knew—or thought I knew—changed in that instant. Waves of fear, shame, and embarrassment consumed me. Questions flooded my mind: How would I tell my family? How would my friends react? What about my career? I had just completed my university degree and begun working full-time. I'd even purchased my first new car.

The answers I received from professionals were unsupportive and dismissive:

• “You’ll need to quit your job.”

• “Consider becoming a massage therapist.” (Ignoring my four years studying health management.)

• “You shouldn’t drive home from this appointment.” (I'd driven myself there.)

• “I've had to inform 80-year-olds they can't drive anymore.” (I was only 24.)

My journey into job hunting was marred by blatant discrimination:

• [After disclosing I'd need assistive technology] “We don't think you're suitable for this role. Please pack your things and leave immediately.”

• [After a trial day where I mentioned accessibility software] “We’ve decided to hold a second interview round.” (I wasn’t successful.)

• [Interview question for an administrative role] “Do you have a medical condition? Can you drive?” (Driving was irrelevant to the admin role.)

These incidents weren’t isolated—they spanned years and were echoed in the stories of others experiencing vision loss. Many people I spoke to struggled with employment discrimination and the dilemma of disclosing their disability.

Determined, I returned to university to study psychology, only to face more barriers:

• [University] “We're still waiting for the textbook PDF from the publisher. You'll need to withdraw.” (Week 8; I completed without the textbook.)

• [Thesis supervisor] “You read too slowly to finish.” (I filed a complaint and left the university.)

• “You can't meet psychologist competencies—you can't see, so you can't build rapport.”

• “Don't apply to our clinical master's program—you won't meet competencies due to blindness.”

• “You can't assess risk without sight—it's dangerous.”

• “You won't manage assessments; you won’t meet competencies.”

I reached a breaking point. Driven by frustration and a deep need for change, I enrolled in a PhD program to document and challenge the biases, assumptions, and discrimination facing people with disability in employment.

I found strength in leveraging my lived experiences to shape meaningful research, transforming negative experiences into purposeful advocacy. My journey highlighted the immense value of incorporating lived experiences into professional practices, research, education, and everyday life.

It fuels empowerment, generates crucial insights, and advances our collective journey toward a more inclusive world.