At age 24, my father was diagnosed with a rare form of adult-onset muscular dystrophy. He had noticed odd symptoms while in the army, particularly while playing the sousaphone in the army marching band, and they progressed until he had to seek medical attention.
The diagnosis came with little explanation or prognosis for a healthy, active life. Without money or adequate insurance, he relied on the VA for any medical care he needed, and had to accept what they provided.
Throughout his brief life, he was pragmatic, persistent, and consistent. He continued working as a spot welder for as long as he could (he walked to work!), and appreciated his employer, who shifted him to different jobs as his strength diminished, enabling him to retain dignity and independence.
He continued to play the tuba in a polka band for as long as he had energy (small-town Wisconsin band that played at weddings and local events), and enjoyed the social environment with supportive and helpful band members.
What disturbed him greatly was treatment by others, who spoke to him loudly and enunciated with exaggeration – as though his physical limitation meant he was mentally unable to comprehend simple language.
He was embarrassed at the frequent stares and mocking gestures; his posture and gait were unlike any other that people had seen. He eventually avoided contact with all but those who knew him, and reminded us that people decide who and what others are by what they see (and by the words of their “thought leaders”).
Before leaving us at age 40, he made sure we understood that bodies with limitations and minds that function differently do not define the totality of a person; and importantly, that all persons are valuable and worthy of respectful treatment.
As I faced life-threatening issues, I came to fully comprehend the poignant meaning of his words. Treating others with kindness, civility, and courtesy is imperative – our attitude and interactions with others are a true indication of our own character.
If we are to achieve a richer culture, we must weave one in which each diverse human gift will find a fitting place.
What is disability pride?
AmeriDisability describes Disability Pride as “accepting and honoring each person’s uniqueness and seeing it as a natural and beautiful part of human diversity.” The National Council on Independent Living stated that disability pride is necessary to combat the rampant ableism that can include stigma against people with disabilities and barriers to access. There are many resources that have a rich reservoir of information and insights to help us understand and contribute to eliminating discrimination and promote respectful treatment of people whose lives include more challenges in navigating the world, and who maximize their abilities to make the world a better and more equitable place for all.