Disability activists push for more inclusive Pride celebrations By Zoe Christen Jones Drag queens celebrating Pride Month
The coronavirus pandemic changed how the United States and countries around the world celebrate Pride month. This summer, many American cities opted for a hybrid celebration, hosting socially distanced marches or completely virtual events. But activists are still pushing organizers to make events accessible for the disabled community.
Annie Segarra, a disability activist, who has Ehlers-Danlos Syndrome and uses a wheelchair, said things like video captions, translators and audio descriptions of visual events can mean the world to disabled individuals who want to join the celebrations but are afraid of being left out.
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Muswell Hill student fundraises for Ehlers Danlos Syndrome | Hampstead Highgate Express
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Heart Foundation
Each year, more than 300,000 Aussie school kids take part in the Heart Foundation’s Jump Rope for Heart program. Every one of them is special – but nine-year-old Xavier Simpson is more inspiring than most.
Xavier was born with Ehlers-Danlos Syndrome (EDS), a rare inherited condition that affects the body’s connective tissues, which are responsible for supporting and structuring the skin, blood vessels, bones and organs.
Some people with EDS also have heart defects, and this is the case with Xavier. His aortic valve does not properly control the flow of oxygen-rich blood to the rest of his body. This means Xavier is prone to fatigue and breathlessness.