International Day of Persons with Disabilities will be celebrated in the UN today, and this year’s theme is “leadership and participation of persons with disabilities toward an inclusive, accessible, and sustainable post-COVID-19 world.” Quite the mouthful, but hopefully they will walk the walk and not just talk the talk.
What does an inclusive, accessible, and sustainable world look like for those with disabilities in a post-COVID era? As someone who manages a debilitating disease every single day, I tried to imagine what that looks like for someone with myasthenia gravis. In a perfect world…
Children are not bullied for their appearance. Droopy eyelids and weight loss/weight gain put an easy target on the backs of kiddos with MG (I can personally attest to this). While I don’t think disability education at a young age will eradicate all the bullies, I do think it would increase awareness and hopefully help children be cognizant of all differences.
There would be affordable options for nutritious foods. I feel better when I nourish my body with healthy food, however, my wallet is usually the one left starved. With such an emphasis on maintaining a well-balanced diet with chronic disease, we need to make proper nutrition more accessible.
Cities were built with adaptive equipment in mind. Many people with MG utilize assistive devices, yet we live in a world that is constructed for able-bodied individuals. Ramps, doors, public transportation…all of these things could use a makeover.
Employers would focus on what people with disabilities can do versus what their disability prevents them from doing. It wasn’t until the pandemic that flexible work schedules became possible despite people with disabilities requesting this accommodation for years prior. A flexible work schedule is just one example of the many adaptations that can be made in the workforce, a gap that has been unfilled for far too long.
Mental health is viewed as important as physical health. With a chronic illness like MG, it is easy to fixate on the physical limitations, however, our mental health is often affected by this disease as well. In a perfect world, everyone would see the value in making mental health a priority, and moreover, understand its potential to minimize physical symptoms.
As someone with MG, what would an inclusive, accessible, and sustainable post-COVID-19 look like to you? At the MGA, we want to embrace differences, approach things with an open mind, and implement programs and services that genuinely help those with myasthenia gravis. Let us know how we can continue and expand our efforts in 2022!
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