July 13, 2023
GT Community: Marilee and Joseph of Wisconsin
We value making space for the people we serve to tell their own stories. This is the story of Marilee and her husband, Joseph, of Wisconsin. She started self-directing with GT in 2016. In this post, you can hear about her experience in her own words.
Meet Marilee
Marilee is a disability activist, graphic designer, and artist in Wisconsin. She joined ADAPT (American Disabled for Attendant Programs Today) while in college. Some of her advocacy with ADAPT includes fighting for accessible busses. She was even arrested while protesting an attempted repeal the Affordable Care Act! Currently, ADAPT is working on a bill called the Latonya Reeves Freedom Act.
Marilee’s Disability
Marilee was born with Tetra-amelia syndrome. This is a very rare disorder where a person is born with no arms and legs. Less than 1,000 people worldwide live with this condition.
Her parents had no idea that Marilee was not developing limbs until she was born. Most people with Tetra-amelia syndrome are stillborn or die shortly after birth. But Marilee survived and has thrived.
With her specially-designed wheelchair, Marilee is able to get around. The direction and speed of her travel are controlled by a joystick above her right shoulder. Marilee also uses her mouth for many things that a person with arms would use their hands for. Some examples are typing on a computer or moving a spoon in a bowl to feed herself.
How Self-Direction Helps Marilee
Marilee is able to move with her wheelchair, and type on a computer using her mouth. But there are many things she still needs assistance with.
Marilee started hiring, training, maintaining, and firing her own attendants shortly after college. And when her relationship with Joseph blossomed, he stepped in to help as well.
With self-direction, Marilee is able to continue hiring people she trusts to meet her care needs. This helps her live a vibrant life in the home she and Joseph share. Marilee owns Adamski-Smith Multimedia Solutions which does graphic design, photo restoration, and more.
After I graduated college I said, ‘Okay, I need to be my own boss. I need to self-direct my own cares.’
Marilee A.
Learn More About How GT Independence Can Help You
With self-direction, you have the right to live the life you choose—regardless of age or ability—in your own home or community. At GT Independence, our job is to help make self-direction easy.