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Lydia Dawley spoke at Winona State University last week for an event focused on celebrating and accepting disability.

‘I finally get to be independent’


(11/11/2019)

by CHRIS ROGERS

Ever play charades with people who are terrible guessers? Lydia Dawley asked the crowd. “Now imagine you have to play this game every day of your life with people who never guess the right answer,” she said.

Welcome to Dawley’s world. A farm kid from outside Decorah, Iowa, Dawley is a college student on her way to becoming a speech pathologist. On top of that, she works as a co-developer of an assistive speaking device software program and as a public speaker. Her address at Winona State University (WSU) last week, at an event focused on celebrating and accepting disability, was her latest oratory engagement.

Dawley has cerebral palsy. As she was being born, Dawley’s umbilical cord became wrapped around her neck, cutting off oxygen, damaging areas of the brain that control movement and speech, and causing her to “die” for a few minutes, the young woman explained.

“Now you can tell everyone you met a dead person,” Dawley quipped. “Lucky for you, the part of my brain that controls humor was not damaged. And lucky for me, the part of my brain that controls cognitive learning was not damaged. So I can do things most people would never imagine I can do.”

Fortunately, Dawley’s parents let her discover for herself what she was capable of, she said. When she was young, Dawley recalled, “My parents told me if I wanted to be independent in this world, I would have to advocate for myself.” So, Dawley told the crowd, she did whatever she had to make herself heard.

In kindergarten, Dawley had an aide who was supposed to help her, but the aide just would not pay attention to what she was trying to communicate. Finally, the young Dawley resorted to giving her aide a swift kick. That got her sent to the principal’s office to be disciplined. Instead, the principal listened and assigned Dawley a new aide, Connie, who would be with her from that day until she graduated high school. “I call her my second mom,” Dawley said.

As she got older, like other teens, Dawley yearned to blaze her own path. When she left home for college at the University of Wisconsin - Whitewater — where she is nearing the end of her undergraduate studies — it was a wish come true. “Now that I’m in college, I finally get to be independent,” she said.

Independence also requires navigating some mishaps. Dawley told the crowd about the time her wheelchair malfunctioned at the same time her tablet died, so she was stuck on a sidewalk in the middle of campus without being able to move or speak. A young woman stopped to help her, but was unable to understand Dawley’s charades. So the woman called a police officer, who figured out the issue with the wheelchair and got Dawley on her way. Later Dawley posted to Facebook: “I wasn’t even in college for one month and someone called the cops on me.” When her family saw that post without any explanation, she stated, “Let’s just say my mom now takes blood pressure medication.”

Despite her mother’s worries, Dawley said, “I’m in total control of my life, and I’m doing a pretty fantastic job.”

Dawley gave her speech last week using the same assistive speaking app she helped develop. On a tablet, the app allows her to choose from menus of words or spell out words directly, and the app speaks for her. To compose her roughly half-hour address, Dawley explained, she wrote out each section of her speech word-by-word, then assigned each section or anecdote to a different button on the app. One touch of her stylus and app tells the selected story. Then Dawley pauses for laughter before selecting her next passage.

“I wrote it on pages, and I had to copy each sentence onto a button,” Dawley explained in an interview. “She spent about a month — half an hour here or half and hour there — working on that speech,” WSU Communications Studies professor Kelly Herold said. Herold invited Dawley to speak and chatted with Dawley about her writing process while giving her a ride to Winona. Writing the speech was a lot of work, Dawley acknowledged. “That and doing homework was a struggle for me,” the undergrad said.

The most difficult experience of Dawley’s life was dealing with her father’s death, she said.

Dawley also shared the most difficult experience of her life: her father’s death. She got a message at school that her father was in the hospital. When she arrived home to visit him, family members were gathered around, but her dad was nowhere to be seen. She realized before anyone told her. “I never knew what it was like to feel numb, to feel my heart break. I could not understand the words they were saying,” she said. “My dad was my world … What was I going to do now?” she wondered.

“Like everyone who loses their loved ones, we have to continue with our lives,” Dawley stated. That meant going back to school and working toward graduation. “I can’t wait for that day,” she added, “because I can say, ‘I did it, Dad. I did it.’”

“Some kids have a tough time launching — you know, failure to launch,” Herold said, “And Lydia, she’s on the launching pad and waiting to ignite the rockets. That’s what I love about her.” He joked of her sense of humor, “Her dad, I think, was a smart [aleck], and I think that’s where she got it.”

Dawley left the crowd with this message about people with disabilities: “We don’t want sympathy, we want friendship and the opportunity to live life like everyone else.”

Chris@winonapost.com

 

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