At the age of 46 Maria Oquendo-Scharneck began noticing changes in her ability to hear. At work she would leave meetings realizing she hadn’t heard half of what was said. Yet Oquendo-Scharneck, who describes herself as a very confident person, was reluctant to address what was becoming a handicap.
At the time, Oquendo-Scharneck was collaborating on a project with the Progress Center for Independent Living through her job with Age Options. The Progress Center, with a decades-long focus on helping the disabled live more independently, inspired Oquendo-Scharneck to face her own disability. Now at the age of 49, she feels no shame in explaining to others that she has a hearing loss. Oquendo-Scharneck simply asks others to speak louder and she makes sure she sits closer to whoever is speaking.
“Through working with them I become comfortable with myself,” Oquendo-Scharneck said. “I started to feel I was a person with a disability and that wasn’t a bad thing. They helped me understand my disability.”
For 20 years the Progress Center for Independent Living has served the approximately 500,000 Cook County residents with disabilities. The organization is celebrating that anniversary this month, and at its annual meeting on June 21 attendees will hear from one of the Progress Center’s founding members, Robin Jones.
According to Jones, who served as the group’s first executive director, the creation of the center was “really a grass-roots effort.” That spirit of community activism continues today as the center pushes for greater recognition of the disabled at the local, state and federal levels.
In 1986 a group of residents began meeting to discuss issues relevant to those with disabilities. Former state senator Phil Rock got involved and by 1988 they had obtained non-profit status, developed an initial board of directors, obtained government funding, and drafted a mission statement.
The center set out to, as Jones described, “provide independent living and support for people with disabilities.” Early in the Progress Center’s existence its staff worked to develop relationships in the community, and it was not long before their impact was felt.
“We established ourselves pretty quickly; grew into three store fronts within a year and a half,” Jones said. “We hit the road and started running.”
The Forest Park center quickly had its hands in one of the most significant legislative milestones for the disabled, sending several people to testify before lawmakers in Washington, D.C., as the Americans with Disabilities Act was passing through Congress. When the bill was signed into law in 1990 a number of representatives from the Progress Center were on the White House lawn.
Through the years the Progress Center has affected many immediate changes in the lives of disabled people. In the past nine years they have contacted more than 250 businesses about making their shops more accessible. They’ve helped ensure that polling stations would have the necessary accommodations, and the members have fought for wheelchair lifts on public transit busses and trains.
One of the most important facets of their work, according to members, is reintegrating the disabled so that they aren’t forced to live in institutional settings. In the last decade the Progress Center has helped more than 160 Cook County residents move from nursing homes to private residences.
While they have been successful on this front, it is a struggle to assist everyone.
“The availability of affordable, accessible housing is pretty rough,” Diane Coleman, the group’s current executive director, said.
The assistant director at the state’s Division of Rehabilitative Services, Francisco Alvarado, has worked closely with the Progress Center on this front. Alvarado focuses on job placement services and his office has worked with the Forest Park group repeatedly through the years. Alvarado said he has seen changes that, over the last 20 years, are a direct result of the center’s influence.
“They are truly a model for our community,” Alvarado said. “The progress that I have seen is that employers now understand how people with severe disabilities can make significant contributions to our community.”
But changing the public’s perception of the disabled often is not something that can be done over night. Organizers at the center said information needs to find its way into main stream media before real progress will occur. To that end, the Progress Center helped start a radio program in 2005, “Vida Independiente.” The weekly Hispanic radio show airs on Saturdays from 9 a.m. to noon on WNTD-AM, and is devoted entirely to educating listeners about various disabilities and how to maintain an independent lifestyle.
Coleman has made several appearances on the show since helping with its launch.
Every year, representatives from the Progress Center also make their way to the Jerry Lewis telethon for the Muscular Dystrophy Association to join in a protest of the telethon. The protest is what Coleman describes as a more “edgy form of public education.” She says Lewis subscribes to a sentiment that damages society’s view of the disabled, which is exactly what the Progress Center is fighting. Lewis has made a number of controversial statements regarding the disabled; Coleman pointed to an article written by the entertainer in 1990 in which he said people who have Muscular Dystrophy are “half a person.”
“We challenge the attitude against disabilities that are prevalent in society, that is a huge part of the mission,” Coleman said. “We want to create a world that is welcoming and equally available regardless of the type of disability. When you have services provided by people with disabilities, what that peer conducted service does is it says to the people with disabilities out there – who are being told they can’t do anything, or all the different things society says – that that’s not true.”
The challenge of changing public perceptions is not aimed just at the able bodied. Those living with various handicaps must also come to appreciate their value to society. In the case of Oquendo-Scharneck it was a struggle before she felt comfortable with her hearing loss and was no longer embarrassed by the shortcoming. Now she talks of being empowered by something she once would have described as a hindrance.
“We are not just a tragedy,” Coleman said.
