This is the final part of a three-part series featuring 10 individuals’ insights on living with a disability or an illness. Be sure to check out Part 1 and Part 2 of the series.
GG has transverse myelitis, which is a rare neuroimmune disorder.
It left her paralyzed from the chest down in December 2009. The lack of accessibility is an issue that GG most commonly faces. She often finds getting around difficult, “often impossible” even. She deliberately chose the 125thStreet ACBD train station to be the backdrop for her photograph (pictured left). The train station, which is 20 minutes away from where she lives, is the closest train station which is ‘accessible’, despite its broken elevators. “I doubt I’d think about being disabled as often if more things were built with accessibility in mind,” she says.
GG has also dealt with people’s misconceptions towards individuals with disabilities, and prying questions about her disability. To that, GG puts it out there that she is more than her disability. “My life doesn’t revolve around my disability; it’s just one aspect of my life,” she says. In fact, GG feels that she has found more confidence in her own skin now. “I feel like I’m the new and improved GG 2.0.”
Delaney has had chronic Lyme disease for around seven years.
Like GG, Delaney also refuses to let her life revolve around her disease. Delaney has undergone psychological and mental distress as a result of her illness. Her speech and memory have also been affected by it. Delaney has also faced doubts from others who failed to empathize with her condition as Lyme disease does not affect her outward appearance.
“Having people not believe I’m sick is one of the most painful things. It’s hard enough to tell people that I have Lyme disease, so for them to be so dismissive is a slap in the face.”
Choosing to have her photograph (pictured right) taken at Grand Central Station is telling of who she wants to be. She is just another passenger, another human being in the sea of people. And that is who Delaney is – an individual who is not defined by her illness.
Jason was diagnosed with primary progressive multiple sclerosis at 25.
Jason views his disability as an opportunity to experience life in different ways – as an able-bodied person and as a person with disability. He has also experienced people’s assumptions that he is not sexually desirable, or that he is poor and suffering. Contrary to that, Jason is a filmmaker, whose most recent work, When I Walk, won a 2015 Emmy Award. Besides that, Jason also runs a non-profit organization. He has a project called AXS Map, which is a crowdsourced online application where users rate and review establishments based on accessibility. AXS Map also partners with Google and even the United Nations in an effort to make the world a more accessible place. Jason has a clear vision of what he wants to achieve in life.
“Disability is my full-time work, and I have a mission to make it (my story included) something everyone knows about.”
Kerry was born with upper limp reduction defects on her left arm.
She has encountered people who try to assume her ability to do things. While she appreciates their concerns, Kerry recognizes her own capabilities. She is able to find alternative solutions for day-to-day routines that she might not be able to carry out. For instance, she keeps her hair short because she is unable to put it up in a ponytail.
Her determination and resourcefulness also propelled her standing in the theater scene. When she was 15, she was initially rejected by a casting director during an audition, who told her that she was unsuited for theater because of her arm. Her perseverance to pursue a career in the theater industry paid off. Kerry is now a working voice and dialect coach for actors, and has also produced shows and worked in the theater scenes of New York and London. She has certainly proved the casting director wrong, whose remarks incidentally gave her the extra drive to achieve her dreams. “I guess I have to thank him someday,” she jokes.