We Just Want to be Treated = is a new organization that is looking out for the welfare of those with disabilities. It is being organized by Josephine Sei, of Sedalia, who is confined to a wheelchair with Nail Patella Syndrome.
Sei and her friends, Beverly and Richard Jacobi and Valarie Ream, decided to organize the group in November 2015 with the hopes of having a benefit walkathon in May. They approached Sedalia Mayor Stephen Galliher who said he was impressed with their mission.
“They came in and discussed this with me quite sometime back,” he said from the Municipal Building on Friday.
The group explained what they wanted to do, how they wanted to proceed, and asked for the Mayor’s suggestions.
“I gave them some of my thoughts on it,” he added. “They have been a great bunch of people to work with, they’ve got a good cause. Hopefully they will have a great, great turnout.
“My hat goes off to these ladies, because of all the hard work,” he added. “… Just because she’s in a wheelchair, doesn’t mean she doesn’t have the gumption to get-up-and-go. She hasn’t let this get her down.”
Sei, president of the group, said, while meeting with the Mayor on Friday, that they plan to have a walkathon May 14. The event will begin at Osage Avenue and Fifth Street and proceed to Shelter No. 2 at Liberty Park.
“There’s going to be entertainment, food, crafts, and people speaking,” she added.
Speakers would include a person from West Central Independent Living Solutions (WILS) and possibly Galliher.
The purpose of the walk is to receive donations of wheelchairs, walkers, canes and other equipment for those who are disabled.
“We are trying to get wheelchairs and walkers, because there’s a lot of people out there who fall through the cracks,”Jacobi said. “We want people to know just because we are handicapped, our minds are still functioning and we can do things. In fact, Josie is the one who came up with this, she is the one who is behind it. We are just trying to help her out.”
Nail Patella Syndrome, also called Fong’s Disease or Hereditary Onycho-Osteodysplasia, is a rare disease. Sei, 50, was born with the syndrome that can affect the eyes, nail beds and bones. She said she has been accepting speaking engagements to educate others about her debilitating disease.
In Sei’s case, she was born with out a patella, or knee cap. According to www.npsw.org, the disease is hereditary and can also affect the kidneys.
“It’s a degenerative disease,” Ream said. “It’s working on degenerating her bones and her muscles.”
Sei said it wasn’t only her illness that prompted her to begin We Just Want to be Treated =, but others too.
“It’s other people … being treated equal, we’re just like everybody else,” Sei noted. “We find ways to work with stuff. In the walkathon I really want to stress that we want people in wheelchairs, but the people who can walk we want them to use equipment to walk in the walkathon.”
She added that this would help them have a better understanding of daily living with a disability.
The group is also seeking volunteers to help with several aspects of the walkathon, such as setting up chairs and tables at the park and standing at the intersections during the walk.
“I think they should be commended on wanting to do this,” Galliher said. “It’s difficult for people who are in good health to do it, but those who are handicapped it’s much harder.
“These folks don’t give up,” he added. “You think because you have wheels it’s easier, but it’s not. You see people who are always down and then you see ladies like this who really have a problem. (Sei) is like, I’m moving forward… I’m on a mission. It should be a lesson to those who think they have a problem when they don’t.”
Jacobi said she has a motto to keep her spirits up.
“It’s OK to get depressed, but you only allowed yourself five minutes for wallowing in it,” she said. “Then you pick yourself up and go on.”
She also has several health issues and isn’t sure what the future holds.
“I may be in a wheelchair in the next several months, you never know,” she added. “
Jacobi said the cost of one manual wheelchair is $435, and for some people this is unattainable. An electric wheelchair can cost several thousand dollars.
The group is also seeking people who can repair broken wheelchairs. Sei is storing donated equipment in an extra room in her home.
Jacobi added that to receive a wheelchair or other equipment from We just Want to be Treated =, the person needs to have a doctor’s statement.
The We Just Want to be Treated = benefit walkathon will begin at 8 a.m. Saturday, May 14 in the parking lot at Osage Avenue and Fifth Street. The event is free and walkers may sign up at 7:30 a.m. All-day events at Shelter No. 2 at Liberty Park will take place after the benefit walk. In case of inclement weather the event will be rescheduled to June 11. For more information or to register, contact Sei at 473-1244 or [email protected]
Faith Bemiss can be reached at 530-0289 or @flbemiss.