Changes for people with disabilities have occurred at the Minnesota Capitol because of the combined efforts of motivated parents, self-advocates and professional lobbyists to improve accessibility and inclusion. The topics range from education to human services to state government reforms. But inclusion is an acquired taste, until it is natural. More needs to be done to be responsive to the current needs of people with developmental disabilities in the 21st century.
Minnesota Partners in Policymaking®, an eight-month training program, was created to help those with disabilities or raising children with disabilities, to speak up when laws and policies don’t keep pace with changing needs. Were these written after consulting with people who live with intellectual or developmental disabilities, or have a child with significant limitations?
Take Partners graduate Usha Ramakrishnan, a married mother of two. The oldest is an 11-year-old son with cerebral palsy who uses a wheelchair. For most of his life, he has been in a hospital or at home. Ramakrishnan wants to bring him into the community to expand his mind beyond YouTube. Outings are a challenge because most restrooms are not large enough for her to assist him and still provide privacy. When a restroom is the right size, she thanks the building owner or staff. She’s taken restroom measurements and met with her state senator to discuss accessibility. The building code needs to be updated.
Partners training taught this mother to be bold and unafraid. She is asking for a simple solution to help her expand her son’s world. This is what moms do.
In a broader effort, three Partners families in Maple Grove and Plymouth are approaching their school boards and want their children included in all school activities with their peers. Joel Liestman is one of those parents. He says: “Classrooms that provide space to move, and other alternatives to sitting at a desk, have shown to increase student productivity and critical thinking skills. For children needing 1-to-1 assistance because of their disability, studies show that it is more cost-effective to have the paraprofessional with the child in the class than to segregate the child into a different learning area. When kids learn together, it’s helping all kids — neurotypical and non-neurotypical alike.”
Parents observe that their children learn more and are more balanced in inclusive classes. They develop social skills, learn to make friends and be a friend, regardless of who has a disability.
I, too, am a Partners graduate. Katie, one of my three daughters, has an unexplained dizziness and started using a walker nine months ago, so mobility issues are relatively new. Going through our first winter, and most of last year, I worked with the school to ensure a safe and effective system for her. The school was very supportive and helped implement things that we hadn’t even thought of.
She was able to do the grand march (Prom) in April with accommodations. This was a school year highlight for Katie. The school helped facilitate using her walker and providing paraprofessional support.
We continue to take it day by day, and we learn new things every day. Going forward, I will be a more vocal and impactful advocate — and teach Katie to do the same.
Mobility is too important in our society to have limits on where and when one can go certain places. The now international Partners program started here in 1987 to give parents a voice by “telling their story” of lives impacted by disabilities. When it is your story, it is not easily refuted or challenged, because it is a real-life experience. The class teaches the persuasive, persistent attitude of a lobbyist coupled with friendly kindness to persuade others to join your cause.
These families educate others about stereotypes, degrading “bad words” and pity. Most people have no idea that one in four Americans has a disability. Even fewer understand how a restroom stall of the right size can make all the difference to a mother and her son or how making some changes to the established school prom ritual gives a shining moment to be part of the ceremony to a teen with Down syndrome and needing a walker.
Individuals who have been silent and shy by the weight of being in the disability world are finding their voice. They speak up, confronting attitudes and labels that talk of marginalized people.
Appealing to others’ sense of humanity, they are changing minds and hearts. Those individuals will continue to work with others to make events and activities more accessible and inclusive.
I am looking for more bold people who will think out loud and join me in speaking up for the principles of the ADA and other federal and state laws that respond to the everyday needs of families and self-advocates.
Lee Shervheim is chair of the Minnesota Governor’s Council on Developmental Disabilities and a retired engineering director from Medtronic. He lives in Lino Lakes with his wife where they have raised seven children, three of whom have Down syndrome.