Access to health information and services is incredibly important, but systems and attitudes can make it challenging for people with disabilities to find information and receive care.

As the director of web and mobile digital accessibility at HealthPartners, Steve Sawczyn leads a team focused on improving how we meet people’s needs. Steve says that changes to digital experiences are necessary, “so that people with disabilities are able to engage with those experiences along with everyone else."

Steve, who has been blind since birth, uses life experiences to shape his accessibility work and offer valuable insights about identity, assumptions and what you can do. Listen to the episode or read the transcript.

From finding his way in technology to leading others

“Growing up, I didn't realize accessibility was a thing,” Steve says. “I figured that people with disabilities just had to find their own way, and that was the only way they could be successful in terms of technology.”

Once Steve learned that this wasn’t true, he began teaching others with disabilities. He also began learning about the technical aspects of website and mobile app accessibility.

How a stressful experience sparked a passion for health care accessibility

Steve’s shift to health care accessibility followed a difficult period in his life when his daughter was in the hospital for a serious illness. He was trying to pay a health care bill online, but the website wasn’t set up correctly. He called customer service and, after waiting on hold, was told he should pay it on the website. When he said he couldn’t, the representative asked if there was someone at home who could help him. “And I thought: I should be with her. I shouldn't be doing any of this. This should be a simple process and it's not, because it's not accessible for me.”

While his daughter recovered, Steve didn’t forget this experience. Instead, he used it to refocus on health care accessibility and ensuring that everyone can easily access the information they need when caring for themselves or a loved one.

How misguided assumptions affect patient care

Steve’s experience receiving health care is startling. Steve shares how health care workers have grabbed and moved him without permission. And they’ve asked questions that seem to undermine his capabilities and independence. He says it can feel like behaviors that wouldn’t be considered appropriate in most situations are somehow magically OK if someone has a disability.

These health care experiences make Steve question when and why he seeks care. “Do I really want to go to the doctor? Is it worth it? What am I going to deal with when I get there? What kind of stress am I going to have on top of the stress I already have because I don't feel well?”

Understanding and appreciating a person’s identity

“If we think about someone with a disability strictly through the lens of that disability, we lose sight of the fact that they also are members of other communities,” Steve says.

A person who is blind may primarily identify as a dad. A person in a wheelchair may see themselves as an athlete. A person who uses a sound board to communicate may consider themselves a poet.

“It is entirely possible and indeed probable that someone with a disability identifies in other ways beyond just their disability. The disability may be a secondary characteristic just as hair color might be a secondary characteristic,” Steve says. And for people who’ve had a disability for a short amount of time, their disability may not be part of their identity at all.

When you primarily focus on the disability, it’s easier to miss health care needs or other concerns that are unrelated to the disability. “The fact they can't see, or they can't walk or whatever, that might not be the biggest struggle that they're dealing with,” Steve says.

The importance of being curious and respectful

Steve believes that curiosity is how we move forward. We can become better by seeking out information on accessibility and communicating with people who have disabilities. But it’s also important to be respectful – don’t assume that educating you is the only priority for a person with a disability.

“Part of the line that is hard to find is people recognizing that while we may be happy to educate, we also are people doing people things. And we are not put on this Earth expressly to educate you,” Steve says.

The bottom line? “I think it comes down to respect and just humanity and dignity, and just recognizing that the person that you're talking to or caring for is a person,” Steve says.