Observing Spinal Muscular Atrophy Awareness Month – August 2023. Focus on TIME Person of the Week
11 August 2023
By Charlotte Alter
Eddie Ndopu on How Disability Helped Him Rethink Excellence
When Eddie Ndopu was a toddler in South Africa, he was diagnosed with spinal muscular atrophy, a disorder that affects voluntary muscle movement. So even as a kid, he had to fight for rights that people without disabilities don’t have to think twice about. Now, at the age of 32, Ndopu is on a mission to reshape how the world thinks about what it means to have a disability.
He holds a masters degree in public policy from the University of Oxford. And In 2019, he was tapped by the Secretary General of the United Nations to be an advocate for its Sustainable Development Goals, which include ensuring access to education for all. Ndopu has made it his life’s work to not only raise awareness about the issues affecting people with disabilities, but to completely reframe the way we all relate to disability—on a truly global level.
And just this month he released a memoir, Sipping Dom Pérignon Through A Straw: Reimagining Success as a Disabled Achiever. In it, he writes about how people with disabilities are often expected to achieve excellence in order to be treated with dignity.
On how living with a disability has become his greatest strength:
This may be jarring to some people, but disability has been the greatest offering and gift of my life because it has enabled me to develop an intimate relationship with my body. And the relationship that I have had to cultivate, with the recognition that I am getting weaker by the day has really enabled me to live with a sense of urgency.
And so, possibility is always on the table. The ability to live with intention and with urgency has really enabled me to accomplish my wildest dreams.
The thing that has been labeled as a deficit, as a weakness, as a source of tragedy, has actually been the foundation of an irrevocable sense of self. So I would go back and tell myself that I am enough, that I am fine just the way I am, and that that is gonna be where my superpower lies.
On what anti-ableism really means:
Ableism as a concept really refers to the ways in which we organize society, and it implicates everybody. Whether you have a disability or not, ableism basically says that there’s only one way of being: one way of being productive, one way of being valuable, one way of being beautiful, one way of being worthy.
Source: Time Magazine
Spinal Muscular Atrophy Awareness Month takes place in August each year. It is a hereditary neurological illness that inhibits voluntary muscle action, leading to gradual muscular weakness and atrophy; thus, to increase awareness and support for people dealing with the illness, we commemorate Spinal Muscular Atrophy Awareness Month.
Spinal muscular atrophy is a congenital condition in which the spinal cord does not form normally. This neural tube develops into the baby’s brain, spinal cord, and the tissues that surround it. Spinal muscular atrophy does not cause any impairments and does not manifest until later in life.
Each year, communities around the world light candles to remember those who have passed away from SMA, and to honour the diverse people and perspectives that make up the community. The annual candle lighting occurs at sunset on the second Saturday of August. This year’s candle lighting will take place on Saturday, 12 August 2023. – CureSMA Organisation