Even by advocates who are well-known, Liz Bauer is admired and respected for her decades of helping to lead the way so that people with disabilities can live in communities with proper help and not waste their lives in state-run institutions.
Bauer, a former member of the Michigan Board of Education and Executive Director of Michigan Protection and Advocacy, spoke Tuesday night (11.12) at a meeting of advocates, executives and directors of nonprofits from Macomb and Oakland counties at the Auburn Hills' location of the Macomb-Oakland Regional Center, Inc. Since its inception in the early 1970s, MORC has been instrumental in closing the 12 state institutions for people with disabilities and mental illness in Michigan and moving some 13,000 people in to homes, apartments and into mainstream society.
Bauer, who has a 41-year-old daughter with development disabilities, emphasized how important it was to know and keep in contact with local as well as federal political leaders.
"When I say to them (lawmaker) it takes two hours to feed a child, they have no idea of what I am talking about," she said.
That's because the average lawmaker really doesn't see in his or her mind what occurs when a child with severe disabilities and fragile health needs to be fed through feeding tubes and a vigilant parent has to make sure the child doesn't choke or have other problems.
"When visiting a lawmaker to press a civil rights issue, bring your child with a disability with you," she said, noting it really makes a difference when a state representative or state senator sees the extent of the child's disability and the types of supports he or she will need. "They realize that child is a person.
"We need to teach (society) that everyone is valued, everyone is worth it," Bauer said.
She also said, "We need new energy and younger parents" who have children with disabilities to re-energize the movement for civil rights and equal access to things needed to live a full life.
The problem might be that there was such success since the early 1970s in getting people out of institutions and into their own groups homes and apartments with 24-hour care that many forget the lonely mother who stayed at home to take care of a child with a disability. Some mothers, such as one in Royal Oak, had three children with severe developmental disabilities who needed constant care. The mother's life was liberated too when she received help from MORC.
Bauer, who started advocating for educational rights of people with disabilities before her daughter was born, said when it comes to budget cuts for those with disabilities this is the "chapter nobody reads."
She said advocates must continually remember the "5 w's + h = plan. The five w's are who, what, when, where, and why and the h is how.
Objectives should be clear and precise so lawmakers can quickly understand the message.
"You don't need to spend an hour trying to decide what to write a lawmaker, just send them a postcard and write 'We need more money allocated' to help those with disabilities."
"There always are forces for an against an objective," she said. "The best way to succeed or develop a lawmaker at the local or national level is to be honest, just give them the facts."
She also said advocacy can lead to burnout or discouragement so "You have to celebrate your small wins."
So parents of children with disabilities need to step up and keep civil rights in the minds of our political, economic and social leaders or some of the major gains made in decades after a century of suffering by those with disabilities will be lost. Remember if you are of child-bearing age, you just might have a child with a disability and then you will wish you had listened to these words.
We can see by Bauer's example that such small victories add up over time and with great persistence and intelligence to a much larger and better world for those of us with disabilities. For that, we owe her a great deal.
Jerry Wolffe is the Writer-in-Residence and Advocate-at-Large at the Macomb-Oakland Regional Center. He can be reached at 586-263-8950.