I asked Jeanne Downey, friend, colleague, parent, and ARC of PA President if she would be a guest blogger. I’ve known Jeanne since we were both young professionals beginning in our fields of human service. Since then, Mary and Ryan were born and both of us began the journey of parenting a child with special needs. I enjoyed Jeanne’s insights; I’m sure that you will as well!
“The snow glows white on the mountain tonight
Not a footprint to be seen
A kingdom of isolation,
And it looks like I’m the queen.” (Frozen)
Frozen is the blockbuster Disney movie, spanning all groups. You can’t go anywhere without hearing a child (or adult) singing “Let it Go…” But initially, I wasn’t a fan of the story-the parents hiding away their one daughter, Elsa, who was “different”; Elsa being isolated because she thought she is some kind of monster, and her sister, Anna, who just wants to play with her , but Elsa resists because she was afraid of hurting her. I felt this is what happens to many families who have children with disabilities and it made me sad. But after watching the movie several times, I saw a different parallel to the lives of people with disabilities-there are ups and downs in our lives and sometimes we just want to run away; we should try to accept and help people who are different from us, even if those differences can be a little scary; there are battles that we must fight; and true love is what helps us rise above it all and live!
“It’s time to see what I can do
To test the limits and break through
No right, no wrong, no rules for me
I’m free!” (Wicked)
Over this past year, our advocates have waged some significant battles and have WON! They have “broken through” in many ways. These battles have included:
ABLE ACT: Sara Wolff, Self-Advocate & Arc of PA Board Member, has been a tireless advocate and she even testified in Washington DC before the US Senate Finance Subcommittee in July 2014. Achieving a Better Life Experience (ABLE) Act creates tax-favored savings accounts for people with disabilities that would not count toward the $2,000 individual asset limits that apply to the Supplemental Security Income (SSI) and Medicaid programs. Sara’s passion changed “the way things are” in terms of future planning for people with intellectual and developmental disabilities!
CHLOE’S LAW: Kurt Kondrich, father of Chloe & Arc of PA Board Member, passionately spearheaded advocacy efforts that led to the passage of Chloe’s Law, the Down Syndrome Prenatal Education Act. This legislation, which was signed in to law by Gov. Corbett in October 2014, mandates that medical practitioners give expectant or new parents “informational publications,” relating to Down syndrome. Kurt’s true love of his daughter led him to challenge current medical practices and change “how it’s always been done” to families expecting a child with Down syndrome.
In 2015, let us ALL make a commitment to impact and improve the lives of people with intellectual and developmental disabilities. It may be at your local schools, places of worship, transportation systems, employers, medical professionals, law enforcement agencies, volunteer groups, sporting events, travel and entertainment activities, etc. There may be something bothering you and as you pursue it, you will probably find that it also bothers many other people. That’s what grass-roots advocacy is all about-not settling for “the way things are” and turning away when we are told “because that’s how it’s always been done”. We make these efforts because of our true love for our family members and friends, and the results impact those that we’ve never even met. Let’s energize our advocacy efforts-we need to turn away from systems and practices that result in isolation and slam the door on limitations placed on people with intellectual and developmental disabilities.
Let it go, let it go
Can’t hold it back anymore
Let it go, let it go
Turn away and slam the door! (Frozen)