In observance of Spinal Muscular Atrophy (SMA) Awareness Month in August, we connected with members of our SMA community to showcase some important insights about life with SMA. Discover their responses below:
“SMA is considered a childhood neuromuscular disease, but there are many of us living well into our 40s, 50s, 60s and longer. As time goes by, science and technology are making our lives easier every day and extending the possibility of a longer life. However, those of us that are older with SMA encounter other medical obstacles, just as those do that don’t identify as disabled... As a direct result, our self-advocacy skills become stronger and louder. We aren’t going anywhere and it’s about time the medical field and the rest of the world recognizes that!”
Ty Dykema is a freelance visual artist in Grand Rapids, Michigan. He says that although SMA can be “an incredibly brutal thing to live with,” it also provides him with a beautiful way to connect with others. “Learning to see my needs as opportunities for human connection changed the way I see myself and my community for the better,” he said.
“Universal Design not only benefits individuals with disabilities, but it also enhances the quality of life for everyone, creating a more inclusive and equitable society,” he said. “By embracing these principles, we can eliminate many of the barriers that currently hinder our full participation and engagement in various aspects of life. It's a step towards a world where everyone can thrive and contribute their unique perspectives and talents.”
Michaela wants others to know about the unique intersections of mental health and physical disability. “The one thing I think we all neglect is the mental health impact of needing to have almost constant companionship,” she said. She also pointed out the stress caused by care arrangements being unstable, due to illness or other situations.