CANNED ART IS COMING FROM CHRISWhen Jamie Duplechine, 44, goes to a restaurant, she’s not always given a menu.
At 15, Duplechine suffered a spinal cord injury. Now she uses a wheelchair and has a caretaker who accompanies her.
“I was like, ‘Excuse me, so I can’t get a menu?’” said Duplechine, who is also a former Ms. Wheelchair Louisiana. She’s not afraid to speak up, but she shouldn’t have to for these basic interactions.
This is just the tip of the iceberg for many people with disabilities when they interact with others in public spaces. From being talked over, to facing health care access barriers, to being ignored all together, people with disabilities often have their needs overlooked. Addressing that problem, advocates say, starts with the basics of listening to people with disabilities directly.
It’s basic decency, treating other people like human beings, but it’s also practical.
By asking someone else, Duplechine said, “They miss my true opinion or my perspective or what I truly need.”
A caretaker that is with someone on any given day may not know the person very well. They might be new or called in at the last minute to fill in for someone else.
“No one else knows what I truly need or desire,” she said.
This kind of exclusion goes beyond restaurant menus. People with disabilities regularly face barriers to accessing health care or discrimination at the workplace. Duplechine went a doctor’s office, and they refused to see her unless someone from her family could transfer her from her wheelchair onto the bed.
But what scares her the most is that people don’t seem to know about or understand the Americans with Disability Act anymore. Many of the people who were in Congress when the ADA was put in place are retired or otherwise no longer in politics, she said.
“It’s left to us to educate, and it seems like individuals with disabilities these days don’t want to be involved, and it’s hard because this is a vital time, because if they start condensing the ADA or anything for disability rights, guess what? All that would happen in the past is going to come back,” Duplechine said.
For Lillian DeJean, the discrimination they face when they physically present as disabled forces them to choose between having support for their body or having respect. Due to their disability, they use a wheelchair and/or oxygen sometimes. Without these visual cues, people might not perceive DeJean as disabled.
When Dejean worked in the Governor’s Office of Disability Affairs, the office itself was supportive, but when they interacted with colleagues outside the office, it was another story.
“I found that it was a lot better if I could walk into the room as an able-bodied person.” DeJean said. “If I could not wheel in there in a wheelchair, if I could not be using oxygen, if I could just look able-bodied, I could immediately garner a little bit more respect.”
If DeJean doesn’t use their wheelchair or oxygen when needed, there are physical consequences to that, but there are also social consequences to using them. When they were appointed to the Voting Systems Commission because of their experience with voting accessibility, they were dubbed “The Governor’s Handicapped Pick” by a former legislator in the audience. Sometimes, when they’re using a wheelchair, people ignore them all together.
People with disabilities who advocate for people who share their identity in professional spaces are usually called “self-advocates,” DeJean explained, but there’s an assumption there, too.
“Whenever a disabled person exists in this community, we’re not just a constituent, we are not a stakeholder, we are a self-advocate,” DeJean said. “If you’re disabled, you’re immediately assumed to be advocating for the community.”
The underlying assumption is that inclusion for people with disabilities is extra or a special interest, not something that is beneficial to everyone or at the very least, complying with the law.
At the Louisiana Youth Leadership Forum, a summer camp for youth with disabilities which DeJean coordinates, the majority of the people at the camp, including the staff, have disabilities. What emerges is a culture of interdependence and care that is rare to see elsewhere.
DeJean said it’s because interdependence is central to the culture of the disability community. When they’re using a wheelchair, other campers hold the door for them. If a camper with autism is having trouble communicating, someone will translate.
“Nondisabled people are also supported in ways that they were not supported before, because people with disabilities understand kind of a matrix of care a little bit better than our nondisability community,” said DeJean. “When you engage with the disability community truly and honestly and genuinely, you have the opportunity to learn about care and interdependence in a really unique way that really benefits everyone, not just disabled people.”
To be sure, direct engagement is not always possible. Not everyone can answer for themselves due to a variety of reasons, but it’s important to try and engage people as humans.
Warren Herbert is CEO with the Home Care Association of Louisiana and a registered nurse. Through his experience working in home health, he encourages people to “suspend certainty.”
“If you think you know what’s going on and you’re certain about it when a person walks into the room, you might not be accurate,” Herbert said.
As a nurse, his training is to always address the patient first, even those who are in a coma. This doesn’t always happen in medical settings, but it should. And socially, he said, people can try to engage with the person with a disability first and use information gleaned from that interaction to move forward.
If you don’t know what to do, open communication is key, DeJean said. Most people with disabilities have heard it all. You can ask people what is important to know/what can be helpful. The key is allowing people to tell you what’s best for them instead of just assuming — just as you would with anyone else.
“Recognize individuals with disabilities as humans and just get to know somebody regardless,” Duplechine said. “Don’t be afraid. We don’t bite.”
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Publish date : 2024-08-26 03:31:00
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