ST. JOSEPH - If Joanne Johnson had been born 30 years earlier, her life would have been very different.
"I would have had a very limited life compared to what I have today," said Johnson, community education and systems advocate for the Disability Network of Southwest Michigan, celebrating its 30th anniversary in October.
Johnson has a physical disability. Had she grown up a few decades earlier she probably would have gone to a segregated high school for students with disabilities. She would have been considered unemployable, someone who would live with her parents, who would never marry or have children.
There were no ramps for the disabled then, and even getting on a bus would have been impossible.
"I would have been expected to live off the government, to sit at home and watch television until I died," Johnson said.
Instead she has earned a master's degree in social work and advocates for others with disabilities who face barriers to living a full life.
"I'm glad I was born in '85 instead of '45," Johnson said from the St. Joseph office of the agency that serves a nine-county area.
"Sure, things have improved in the last 30 or 40 years," said Jenny Wyly, an independent living specialist with the Disability Network. "But we definitely have a long way to go."
Words matter
As part of its 30th anniversary year, the Disability Network's St. Joseph office is hosting a series of community discussions about issues relating to people with disabilities and their place in the community.
The first discussion, held
Oct. 4, was on "Disability Language and Etiquette."
How we talk about disabilities has a big impact on how we think and act on the matter, Johnson said.
At one time terms such as "cripple" for the physically disabled and "moron" for the mentally disabled, were common.
Today the word "handicapped" is considered "old-fashioned" and conveys a negative view, Johnson said.
Advocates now strive to promote a more neutral term.
"It's just one part of what they are," Johnson said.
A disability doesn't exist until a person encounters a barrier, the Disability Network's literature points out.
"It is the environment or culture that needs to be fixed, not the individual with the disability."
The first stop
Promoting that fix has been the the Disability Network's mission since it started in
Kalamazoo in 1981 with one full-time and one part-time staff member, working in a room donated by Goodwill.
It has grown to have an annual budget of $1.9 million and 29 staff members. The Berrien/Cass County office on Lakeview Avenue in St. Joseph opened in 2009.
Johnson has been with the agency for two years and in her current position for 18 months.
The Disability Network, she explained, is the first stop to connect people with needed services, to educate the public and to advocate for social change.
In addition to being a referral service, the agency supports independent living, offers counseling for Social Security work incentives, hosts peer support groups and helps clients make the transition from nursing facilities to home. The office helps people apply for technology to assist them.
Clients are taught how to advocate for themselves.
It's vital that people with disabilities have a voice in making the policies that affect their lives, Johnson said.
Their rallying cry is "Nothing about us without us."
At least 51 percent of the board and staff of the Disability Network must be made up of people with disabilities.
"Our clients know they are talking to someone who has lived with the experience," Johnson said.
For the community and businesses, the agency provides evaluations for compliance with the Americans with Disabilities Act, workshops and presentations, consultations on home and workplace modifications, and a resource library.
Seemingly small things can make a big difference in a disabled person's life.
It can be convincing an apartment manager to put in a ramp close to a building's entrance. It can be getting a social services agency to allow a home-bound person to mail in an application, instead of requiring that it be delivered in person.
It can be helping a local hospital modify its job applications to remove questions about disabilities, which are illegal, Johnson said.
These are a few of the successes the Disability Network has achieved recently, Johnson said.
Invisible barriers
There are disabilities you can see, and disabilities you can't see.
When Jenny Wyly joined the Disability Network last year, she thought of disabilities as mostly physical.
She has since discovered they also can be mental, emotional or intellectual.
She has been working with recovering heroin addict Jennifer Ballard for about a year.
Ballard, 43, who also has an anxiety disorder, was referred to the Disability Network through
Michigan Rehabilitation Services.
She said Wyly has helped in every way to get her life back together.
"Without Jenny I don't know what I would do," said Ballard, who has been clean for about a year. "She has been the most valuable player (for me)."
Ballard, was homeless. Wyly helped her find a house in a drug-free neighborhood. She has brought her clothes, accompanied her to meetings with other social service agencies and has driven her to appointments at a methadone clinic.
Ballard said an anxiety disorder led to her addiction. Many people don't understand that, but Wyly does, she said.
"She had the most faith in me," Ballard said. "She goes above and beyond."
Catherine, a 24-year-old
Dowagiac resident with learning disabilities, praised her own independent living counselor, Jackie Curtis.
"She not only helps because it's part of her job, she takes the extra initiative to give you someone to trust," said Catherine, who asked that her last name not be used.
Curtis helped find a home for Catherine and her twin 2-year-old boys, helped her get Medicaid assistance and is helping her enroll in cosmetology school.
Counselors at the Disability Network help clients speak for themselves, Catherine said. "They help our opinions, our voices to be heard."
Independence is always the goal, Catherine said.
"I am able to do things on my own that I would have never had the confidence to try" before contacting the Disability Network, she said.
Statewide struggles
Along with working at the local level, staff members lobby for changes in statewide policies. This year Johnson took part in Transit Advocacy Day in
Lansing, pushing for greater accommodations in public transportation. She also is part of the
Berrien County Transit Advocacy Group (TAG) Team, which works to improve local bus systems.
Michigan's 1.9 million disabled are facing challenges due to state budget cuts.
Starting
Oct. 1, stricter guidelines were put in place for people with disabilities and senior citizens receiving home chore assistance through the Department of Human Services. This assistance with cleaning, shopping, cooking and other tasks helps people stay in their own homes.
Also this month, State Disability Assistance payments for new enrollees were reduced from $269 to $200 a month.
The Disability Network of
Southwest Michigan and other agencies are fighting to have these programs fully funded, Johnson said.
Accommodations for the disabled benefit everyone, Johnson said. Sidewalk ramps help mothers pushing strollers as well as people in wheelchairs. Close-captioned television broadcasts, started for the deaf, allow patrons in noisy bars to keep up with the big game.
And no one knows when they or a family member might have a disability requiring the same accommodations.
If Johnson had a magic wand, what would she change about the way society deals with disabilities?
"I would like to see disabilities recognized as a diversity," like race and gender, she said. "It would just be there. Everybody would be included. People would be part of the community."
Wyly said she would like to see disabilities viewed as "just a characteristic, like being tall or being short. It just is."
The Disability Network's Berrien/Cass office can be reached at 985-0111. The Kalamazoo office can be reached at
(269) 345-1516. The website is
www.dnswm.org.
