July 26, 2023
On Disability Independence Day (July 26th) 2021, Arrow community resident Nancy Bartlett met with blogger and entrepreneur Alex Dacy (social media handle: @wheelchair_rapunzel) to discuss the Americans with Disabilities Act and Disability Independence. Through her social media presence, Dacy works to change the perception of what life looks like as a disabled person.
Bartlett and Dacy started off the conversation discussing the verbiage of disability. There is identity-first language (“a disabled person”) and person-first language (“a person with a disability”). Many people were taught that person-first language is the more sensitive, however, preference among the disabled community has shifted in the last few years. Dacy herself favors identity-first language. Ultimately, the preference is person-dependent. “Like pronouns,” Dacy said, “All you have to do is ask. It’s really important to know there isn’t one correct way to refer to a disabled person.”
When asked what has contributed most to her independence, Dacy talked about her upbringing. She has a rare genetic disease called spinal muscular atrophy type 2. In simplified terms, the signals from the brain don’t communicate with the muscles and the muscles atrophy. Her parents made growing up with a disability as “normal” as possible and didn’t limit her activities. “I’m a Midwest girl!” Dacy said, and her childhood was filled with cookouts, boating, fishing, and sleepovers. She would use her wheelchair to pull her friends along on their rollerblades. Dacy credits her independence (“and drive – Ha! Wheelchair pun!” she joked) to the fact that she wasn’t coddled. Specifically, she is grateful she wasn’t homeschooled, as she sees that as detrimental to learning how to interact in the world as a disabled person.
Just past the 30th anniversary of the Americans with Disability Act (ADA), Bartlett asked Dacy what it meant to her. Dacy explained that the ADA was pivotal in disability history, marking the moment disability became visible in legislation and acknowledging the rights and accommodations necessary for disabled people. But there’s still work to do, she said. The ADA laid out foundational rights, but more oversight is needed.
As someone with an active social life and who is out and about quite a bit, Dacy sees accessibility still lacking, which limits her ability to fully participate in society. “The issue isn’t my wheelchair, it’s that my wheelchair can’t go up stairs.” When she has encountered buildings that don’t follow ADA guidelines, she has brought it to the attention of the business owner and is met with “Oh, I didn’t know!”
Frustratingly, there isn’t much more that can be done. When there are violations, it’s difficult to have them addressed and often the onus is on disabled people to file a lawsuit. Dacy would like to see a separate institution that directly oversees ADA compliance.
For there to be meaningful change in our society, disabled people need a seat at the table, especially in leadership positions when it comes to issues that directly affect them. “We’re talked over by nondisabled people,” Dacy said. Instead, allies need to listen to and amplify disabled voices.
For the full conversation, click here.
Saint Charles, Missouri-based Arrow Senior Living manages a portfolio of communities that offer varying levels of care, including independent living, assisted living, and memory care. Each and every senior living community supports residents by focusing on dignity, respect, and quality of life. The programs and amenities offered are selected to provide only the highest standard of quality and comfort.
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