‘Leading the path for others’: New program in North Texas teaches basics of disability advocacy

From KERA News:

Jacqueline Campuzano is one of about two dozen people scattered across a plain conference room filling out worksheets.

“So, why do you care about this?” said Jessie Kelly, an employee for a local independent living center, as she helped Campuzano answer the questions. “How does this impact you or someone that you care about?”

Campuzano and other Texans with disabilities are facing a lot of challenges at the local, state and federal levels – like public transit changes, Medicaid cuts and federal lawsuits that could have a significant effect on disability rights. But it can be difficult and intimidating to learn how to participate in advocacy work.

That’s where the new Advocacy, Collaboration and Engagement, or ACE, training comes in. It’s hosted by the Arc of DFW Area, a disability advocacy organization, and REACH, an independent living center. The training covers the “basics” so people can learn how to advocate for themselves and their loved ones.

At this training, Campuzano is working on a “quick advocacy worksheet,” which helps people practice what they might say to lawmakers. She decides to focus on a federal lawsuit Texas is leading that claims part of the Americans with Disabilities Act is unconstitutional.

“I am concerned about students not getting their appropriate accommodations,” Campuzano said. “I had an [Individual Education Plan] with accommodations that helped me be successful in school. …I would say some examples are accessing my work in Braille and getting extra time during tests.”

As Campuzano speaks, Kelly writes the answers on the worksheet.

Campuzano has participated in advocacy efforts for about three years with organizations like the American Council of the Blind and the National Federation of the Blind. She’s a “self-advocate,” or a person with a disability who advocates on their own behalf.

Despite her experience, she said she needs more confidence to do what she calls “big advocacy,” like going to the state Capitol. That’s why she’s at the ACE training.

“Not a lot of people have the courage to advocate,” Campuzano said. “I think it’s a good thing that a lot of people are leading the path for others to get them motivated to advocate.”

What does the training cover?

First, attendees learn about different types of advocacy. Then, they learn about the legislative process in Texas from start to finish, with a little help from School House Rock’s “I’m Just a Bill” song.

“This [training] is teaching it on a more advanced level,” said Sarah Sharpe, a self-advocate and independent living coordinator for REACH’s Dallas office. “The value of it is to know how to effectively advocate with the people who sometimes just count us out just because [they think] ‘Oh, you have a disability, you don’t know anything.’”

Arc of DFW Area supplies participants with a folder of resources, including a graphic explaining the legislative process.

So far, the Arc of DFW Area has hosted three workshops across the metroplex – in Frisco, Fort Worth and Dallas. While a five-hour workshop on a weekend doesn’t appeal to everyone, more than 70 people attended the first three ACE workshops.

But the Arc of DFW Area wants to grow the program – especially ahead of the 2027 legislative session, said the organization’s director, Julia Chalker.

“A lot of legislators don’t know much about disability issues unless they have a family member or a friend or someone,” Chalker said. “We try to fill that gap and develop a relationship with them.”

Emphasis on self-advocacy

For the independent living staff with REACH, offering the training and resources to self-advocates was particularly important.

“The person who’s experiencing the situation is always going to be the expert no matter how they communicate that,” Sharpe said.

Sharpe grew up in rural South Carolina, where there weren’t many people with disabilities – which made her feel disconnected from the community. Then, she moved to the state capital, Columbia, where a friend signed her up for a class that taught her how to advocate. Since then, Sharpe said she’s been passionate about making sure people with disabilities have access to the resources they need and the tools to advocate for themselves.

Many of the people she works with at REACH attended the workshop in Dallas. She held the hand of an attendee while helping with the advocacy worksheet.

“We all need to go to our room to sleep, to get dressed and everything like that,” Sharpe told the self-advocate. “Your needs aren’t special. The way you do [things] is different, but your needs are not. A special need is to eat a dinosaur egg with every meal.”

She said it’s important to make sure people with disabilities are engaged in advocacy at all levels.

“We have a better chance of making sure that the disability community voice is being heard directly from the disability community,” Sharpe said. “Not just service providers or family members or people who are indirectly impacted by a disability.”

DeOmri Cockrell, independent living and program development manager for REACH, said working with self-advocates is “probably the most important thing” he’s doing in this phase of his career.

Cockrell’s youngest son has autism, sometimes known as autism spectrum disorder, or ASD.

“I’m an African American male,” Cockrell said. “There is so much less within my community on education about disabilities, about disability rights, and even just the clear understanding that it’s okay to be a person who has a difference or a disability and not to be less than, or treated less than who you are.”

The information in these trainings is critical to people with disabilities, according to Cockrell. He said in “today’s day and age,” people and organizations need to gather information and educate the community.

“We don’t know what tomorrow holds,” he said. “We don’t know what next month, the next week, the next year holds. It’s key for us to put these different avenues for self-advocacy, for self-awareness, for just going towards their goals of independence.”

But, workshops can be beneficial for anyone

While the training can be especially helpful for self-advocates, it was designed for anyone, including loved ones, caregivers or other community members.

Lyn McMurry has a family member with Fetal Alcohol Spectrum Disorder, or FASD, and volunteers with the Texas FASD Network – a relatively new statewide organization. She attended the ACE training because she said her organization is starting to do more legislative advocacy.

“I talked to a couple of the experts here,” McMurry said. “A couple of them were experts in the education field, and I was able to get some key information about how to best advocate, because one of our bills will be a special education bill to add FASD as a named condition to be eligible for special education services.”

The training is also a good space to meet other advocates and raise awareness, McMurry said.

Julia Chalker with the Arc of DFW Area said the training could be useful for advocates focused on other issues.

“While we do talk a little bit about specific disability issues, it is basic enough advocacy information that really you could, you know, somebody that’s working with the elderly or a totally different cause would be able to use this information to get started in advocacy.”

What’s the goal?

Most attendees reported, in a post-workshop survey, they had confidence to engage in advocacy activities because of the training. Chalker said that’s what the program was designed to do.

“We’re hoping that folks will choose to join us,” Chalker said. “Whether it’s going to office visits to see their legislators or going to Austin for events, or even if it’s just them staying home and doing emails and phone calls and spreading the word that way, we’re just hoping they’re going to get more involved than they are today.”

In addition to growing the program, Chalker said advocates want to see more from policymakers and officials – which requires more advocacy and awareness.

“To be quite honest, it’s hard to keep being hopeful and not lose your motivation,” Chalker said. “So much more needs to be done in Texas, so our hope is that this is gonna bring about change, but it may take a while.”

Jacqueline Campuzano said she wants to bring what she’s learned through the ACE training to other self-advocates, so they also have the confidence and knowledge to protect their rights.

She said she’s happy that more people care about what challenges people with disabilities are facing.

“Especially with all of the situations that are going this year and in previous years,” Campuzano said. “I feel like it’s very important for all of us to come together as a team and work together to make this country better.”

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