Nadia Santiago was at a laundromat with her fiancée when she was approached by a stranger who told her how inspiring she was.
“For what? Doing my laundry?” Santiago asked.
Santiago said the stranger approached her because she is a person with cerebral palsy.
Debbie Rozear experienced similar interactions with people.
“The one place, we were walking into a meeting, and because I had my service dog, they said ‘Oh, that’s a disabled dog.’ What?” said Rozear. Santiago and Rozear, from the Lehigh Valley Center for Independent Living (LVCIL), gave a presentation about sensitivity training and communicating with and about people with disabilities April 6.
The event was organized by the Psychology Club, Physical Therapy Club, Occupational Therapy International Club, Students Spreading Disability Awareness Club and Misericordia Student Occupational Therapy Association.
Santiago and Rozear also explained what their organization does.
LVCIL is just one of 67 organizations, one for each county in Pennsylvania, that offer services for people with disabilities. The program exists throughout the United States.
LVCIL has four core services, the first of which is advocacy in which staffers help people negotiate Social security, landlord issues and employment problems.
Staffers also offer peer support in the form of individual meetings, therapy and group meetings.
The organization provides information and referral services.
The focus of LVCIL is to grow the independent living skills of people throughout each community. Work might include helping those who may be moving out on their own for the first time to cook for themselves or arrange transportation.
LVCIL offers specialized housing searches, sign language interpreter referrals, youth and young adult transition programs, community outreach, leadership development and a career path program.
The career path program provides classes to help people with disabilities learn how to dress for job interviews, how to make arrangements to be on time for appointments, and participants receive the help of job coaches.
Santiago and Rozear said in the 1800’s a person with a disability would be removed from society and sent to live in an asylum that provided custodial care because parents would not know what to do about their child’s disability.
A person with a disability was often viewed as someone to be feared. People would commonly make assumptions about their level of function, patronize, pity or ignore the person entirely.
Santiago and Rozear also spoke about the equal rights movement for those with disabilities that started in the 1960’s.
The movement began after Vietnam veterans came home from war to a society that made their functional limitations a reason to deny housing or employment.
The movement is credited to both Justin Part, who helped to get the American with Disabilities Act signed, and Ed Roberts, who was the first person with a physical disability to attend college at UC Berkeley.
Roberts was told by the university’s president that he would get his degree and then live the rest of his life in a nursing home. Roberts disagreed and, with other people with disabilities, founded The Rolling Quads.
“The Rolling Quads would go out and they couldn’t get up and down off of the blocks. So they went to the street department out in Berkeley and they asked if they could make curb cuts so they could go through town and they told them the only ones we can fix are the ones that are broken. The Rolling Quads then got some of their friends together that night with a couple of sledge hammers and they went out and broke up some curbs around the neighborhood, and that’s what started the movement to get the curb cuts throughout the city,” said Rozear.
UC Berkeley is now one of the most disability-friendly college campuses in the country.
Rozear said she faced similar hardships when she became visually impaired at the age of 14. Rozear was not allowed to take sewing class or gym in high school. She was also kicked out of college every semester because the organization funding her education would not pay her tuition on time.
Santiago showed students a video of a woman named Rhonda, a person with cerebral palsy, and asked students to perform an exercise to test their sensitivity skills.
“We are going to watch a video and when you watch, I want you guys to just listen to how she speaks. Think about how you would react if you come into contact with her,” said Santiago.
Santiago explained that the proper way to communicate would be to maintain eye contact and if a student still is unable to understand, ask a set of yes or no questions to properly understand what Rhonda is trying to convey.
Santiago and Rozear also had students perform exercises such as moving around in a wheelchair, wearing darkened goggles to simulate visual impairment, and buttoning up a shirt while wearing mittens to convey how difficult lift can be for a person with a disability.
Santiago gave students a list of things not to say or do – such as speaking loudly or slowly.
“I’m not deaf. I can hear fine. I have a physical disability. Why would talk so loudly too me? Just talk to me like anyone else,” said Santiago.
Santiago also told students to never ask intimate questions such as those about bathroom procedures.
“How do I go to the bathroom? How do you think I go to the bathroom?” joked Santiago.
Santiago also warned students to never say they feel sorry for a person with a disability.
“What does that mean? I live a normal life, I do normal things. I work full-time, I have a house, and I’m getting married in three weeks. I have my own car. I clean and cook. I can do it all,” said Santiago.
Santiago also advised students not to ask if a person is going to get “better” or why medicine hasn’t “cured” the person yet.
“It gets better over time, but medicine won’t cure me. I was in a wheelchair when I was young. I couldn’t walk until I was four, but now I can,” said Santiago.
Santiago and Rozear also said students should ask people with disabilities what terms they prefer and what is acceptable for them to say or do.
Santiago told students the proper way of offering help a person with a disability.
“If someone says, ‘No, I don’t want help,’ it’s not because they hate you. They might just be having a bad day,” said Santiago.
Students also received handouts that explain affirmative and negative phrases, etiquette, and general communication tips.