Disability rights activist
BY MAUREEN O’DONNELL firstname.lastname@example.org Twitter @suntimesobits June 22, 2013 4:34PM
Advocate Mark Karner worked to help people with disabilities lead independent lives.
Updated: July 24, 2013 6:51AM
Polio stole things from Mark Karner, bit by savage bit.
After the disease scourged him as a toddler, he was unable to walk. Lingering complications took away most of the freedoms people take for granted. Scoliosis bent his back. He could only turn his head and move his arms a little. He fought diabetes, congestive heart failure and glaucoma. He had 12 corrective surgeries on his muscles and bones. To breathe, he had to wear a special mask 24 hours a day.
He was so small that his mother could carry him, even when he was a grown man. In the parlance of the disabled community, he was a “full assist”—someone who needed help for 15 hours a day, in order to get out of bed; use the bathroom, and bathe, dress, and eat.
Still, his blue eyes danced.
The breathing mask obscured them, so his longtime companion, Adrianne Olejnik, sometimes asked him to lift off the apparatus so she could peek at the face she loved.
Moments like that took the edge off all those days in all those hospitals.
The refracted magic touched Mr. Karner’s service dog, Elu. In the past year, for the first time, she saw her master’s face without his mask.
She was enthralled.
Elu didn’t have an easy start in life, either. A former owner dumped the young Great Pyrenees-Dalmatian mix alongside a highway. Through training, she became a skilled service dog, one so capable, she could use her mouth to take clothes out of the dryer, put them in a laundry basket, and tug it over to Adrianne Olejnik. “Everything short of folding them,” said Olejnik, who has multiple sclerosis.
Elu’s introduction to Mark Karner’s face happened in an Emergency Room. “I had taken her for a visit with Mark just to perk him up,” Olejnik said. “She had never seen him without his mask.” As hospital staffers changed the device, Elu crept closer and closer to the bed, tail wagging.
“He said, ‘Baby girl,’ and it was like she recognized him for the first time. That bond, I will take with me forever. She just so gently went up to him.”
“He couldn’t breathe without the mask, but a couple of times, he would say to his assistant, ‘Take off my mask,’ and he would say, ‘Elu, it’s Daddy. It’s Daddy.’ ’’
“I absolutely empathized with Elu, because I would take every opportunity just to see the face of the man I fell in love with.”
“There was nothing more beautiful than the dog knowing that love and connection,” she said.
Mr. Karner, who lobbied for independent living for people with disabilities, died June 9 at Adventist LaGrange Memorial Hospital of complications from polio. He was 60.
He contracted polio only months before a vaccine was found, Olejnik said. His family was indefatigable in trying to assist him. “His father even built contraptions with pulleys and clotheslines to try and help him use his arms, as little as he was,” she said.
He went to Chicago’s Spalding school, which focused on educating children with disabilities. He studied music composition at Southern Illinois University in Carbondale, where he had one of the finest nights of his life with one of the greatest of bluesmen.
In the late 1970s, he went to see the legendary Muddy Waters perform. During the break, Waters came over and talked with him, and asked if he’d like to join him onstage, Olejnik said. He sang with Waters for over an hour, said Olejnik’s brother, Steve Gutschick. “When Mark told this story, he was as excited as lighting,” said Gutschick, who is sharing the story in the eulogy he wrote.
Mr. Karner believed that people with disabilities should be given every opportunity to be independent. He lobbied and protested and pushed for assistance with transportation, housing and personal assistants.
For 16 years, he worked at the Progress Center for Independent Living. “In my 12 years there, I saw how much respect he had, and how he worked well with legislators, policy-makers and many advocates,” said Diane Coleman, now with the Center for Disability Rights in Rochester, NY. “He helped win key initiatives--and changed the lives of countless people with disabilities--that gained their freedom.”
“He’s probably gotten over 500 people out of nursing homes and back into their homes, back into the real community,” said Larry Biondi, advocacy coordinator at the Progress Center. (Some in the disability community have called Biondi “Robin,” while Mr. Karner was “Batman.”)
Mr. Karner is also survived by his mother, Dorothy Karner; his sisters, Julie Mazurski and Jan Toth; his brothers, Joe and Gary Karner; his companion’s children, April Neely and Denielle Noe; and her three grandchildren.
Visitation is 3 to 5 p.m. Sunday at St. Mark’s Lutheran Church, 11007 S. 76th Ave., Worth, with a memorial service from 5 to 6 p.m.
The service is expected to be crowded. Olejnik is still trying to decide whether to bring Elu. She will always remember how, despite Mr. Karner’s limited movement, “He could glide his right fingertips over her back.”