Anyone who really knows me knows I am a control freak. From the way my pants are creased, to how my bangs are laying, to chopping an onion — everything is intentional.
My undergraduate degree is in educational and counseling psychology, but it doesn’t take a psychology degree to understand my need for control.
I was born with muscular dystrophy. For much of my childhood, I felt like I had very little control. I depended on family and friends for personal care, and they determined when I got up, when I went to bed, when I washed my hair, etc.
For the first several years of my life, I used a manual wheelchair that I could not effectively push, so again I depended on others to get me where I wanted to go. In addition, my lung collapsed when I was 12, resulting in critical health issues and an unpredictable future. With so much of my life feeling out of control, I developed some eccentricities — a need for control being the most significant.
Gaining control has been valuable for me. I left home at the age of 18 and have been living independently for more than 25 years. During much of that time, I gained control — and independence — by working with the Consumer Directed Services (CDS) program. Consumer Directed Services is a Medicaid-funded personal care assistance program that empowers people with disabilities to manage their own care.
As a CDS participant, I hired and managed my own attendants. I decided when I got out of bed, what I was going to make for dinner and how I managed my household. My career demanded reliability, and in turn, I hired attendants I could rely on. I attribute much of my independence and professional success to CDS.
Self-determination is the process by which a person controls his or her own life and is central to the work we do at Paraquad. The CDS program gives qualifying people with disabilities the opportunity to coordinate their own care according to their personal preferences and lifestyle. It allows a confessed control freak like me to provide very explicit instructions on how I want my clothes and hair to look so I am ready for a TV interview, board meeting, donor meeting or a relaxing day at the pool.
Although I no longer qualify for CDS, I haven’t changed the way I hire and manage my attendants. I believe in the CDS model because it embodies self-determination. As a person who has lived with a disability for 45 years, I am the very best expert at managing my own care, and I believe that everyone with a disability should have access to services that facilitate personal choice and control.
Aimee Wehmeier is the President and CEO of Paraquad. She can be reached at email@example.com.