In recognition of Parkinson’s Awareness Month in April, we are sharing this story of a family member with Parkinson’s and the impact of the Americans with Disabilities Act (ADA).
Remembering Virgil
Author: Janice Baldon-Gutter, Senior Adviser on Diversity, Equity, and Inclusion – Southeast ADA Center
My brother, Virgil, was diagnosed with Parkinson’s disease in 1999. Parkinson’s is a progressive disability that affects the nervous system causing loss of motor control. Parkinson’s specifically affects the ability to move, causes stiffness of the joints, and tremors, but can also cause speech, communications, dementia, and cognitive mental understanding difficulty. Parkinson’s is a disability as defined by the Americans with Disabilities Act (ADA).
Virgil was a veteran, known for his work in videography, and his gifts of speech and communication. Although my brother’s cognitive mental ability to reason and understand did not seem impacted, his movements, speech, and ability to communicate with others changed. He felt forced into retirement due to his speech. He began to have difficulty communicating. He also had difficulty finding community housing, transportation, and medical services.
My sister and I stepped in to assist my brother. We sought help from the Veterans Administration (VA) and a local housing community, Christian Care Senior Living Communities. They helped with medical, mental health counseling, transportation, housing, and helped us understand how the Americans with Disabilities Act (ADA) applied to these areas. They explained my brother’s rights under the ADA and the Fair Housing Act regarding transportation, housing, and effective communication with medical providers. The ADA knowledge helped us ensure his rights were protected and accommodations were provided by community and medical agencies. For example, we requested some of the following accommodations.
Transportation: We applied for services and asked for accommodations. Virgil occasionally used local bus transportation special services, vouchers, and VA transportation services for work and medical appointments.
Communication: During visits with various doctors and housing services, we requested an accommodation that allowed my brother to communicate by writing questions or responses. This allowed him to maintain his independence and respect by advocating for himself and making his own decisions regarding his medical care.
We lost Virgil in 2019. The protections he received under the ADA allowed my brother to enjoy a quality of life that would have been difficult without the law. My family is grateful for the Americans with Disabilities Act and the protections the law provides to ensure diversity, equity, and inclusion for everyone.
Questions about the ADA?
Southeast ADA Center
Phone: 404-541-9001
Email: adasoutheast@syr.edu
Online Form: Contact Southeast ADA
Note: All requests for information by phone, email, or mail are confidential.