Access to health information and services is incredibly important, but systems and attitudes can make it a challenge for people with disabilities to find information and receive care.
As director of web and mobile digital accessibility at Health partners, Steve Sawczyn leads a team aimed at improving the way in which we meet people’s needs. Steve says that changes in digital experiences are needed, “so that people with disabilities are able to deal with those experiences together with everyone else.”
Steve, who has been blind since birth, uses life experiences to shape his accessibility work and offer valuable insights into 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 know the accessibility was something,” says Steve. “I thought 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 heard that this was not true, he started teaching others with a disability. He also started to learn about the technical aspects of the accessibility of the website and mobile apps.
How a stressful experience led a passion for the accessibility of health care
Steve’s shift to the accessibility of health care followed a difficult period in his life when his daughter was in the hospital for a serious illness. He tried to pay an account for health care online, but the website was not set up correctly. He called customer service and, after waiting, was told that he had to pay it on the website. When he said he couldn’t do it, the representative asked if there was someone at home who could help him. “And I thought: I should be with her. I shouldn’t do this. This should be a simple process and it is not, because it is not accessible to me. “
While his daughter recovered, Steve did not forget this experience. Instead, he used it to re -concentrate on the accessibility of health care and to ensure that everyone has easy access to the information he needs when he takes care of himself or a loved one.
How miserable assumptions influence patient care
Steve’s experience with receiving health care is surprising. Steve shares how health workers have caught and have moved him without permission. And they have asked questions that seem to undermine his possibilities and independence. He says it can feel as behavior that would not be suitable in most situations, somehow are magical OK if someone has a disability.
These experiences in health care make Steve ask questions when and why he is looking for care. ‘Do I really want to go to the doctor? Is it worth it? What will I deal with when I arrive there? What kind of stress will I have on top of the stress that I already have because I don’t feel right? “
Understanding and appreciating someone’s identity
“When we think of someone with a disability strictly through the lens of that disability, we lose sight of the fact that they are also members of other communities,” says Steve.
A person who is blind can mainly identify as a father. A person in a wheelchair can see himself as an athlete. A person who uses a sound sign to communicate can regard himself as a poet.
“It is quite possible and indeed probably that someone with disabilities identifies themselves in other ways that go beyond their disability. The handicap can be a secondary characteristic, just as hair color can be a secondary characteristic, “says Steve. And for people who have had a disability for a short time, their handicap may not be part of their identity at all.
If you concentrate primarily on the disability, it is easier to miss the needs of health care or other concerns that are not related to the disability. “The fact that they cannot see, or they cannot walk or whatever, that may not be the biggest battle they are dealing with,” says Steve.
The importance of being curious and respectful
Steve believes that curiosity is how we continue. We can get better by searching for information about accessibility and communicating with people with disabilities. But it is also important to be respectful – do not assume that training you is the only priority for a person with disabilities.
“A part of the line that is hard to find is that people acknowledge that although we may like to train, we are also people who do people things. And we are not explicitly put on this earth to teach you, “says Steve.
The Bottom Line? “I think it comes down to respect and only humanity and dignity, and just acknowledge that the person you are talking about or for which you make is a person,” says Steve.
