Three months ago, 27-year-old Samantha Pace Gasan lost vision in her right eye after suffering a stroke during major surgery – marking the beginning of her journey with disability.
But the young woman, a social activist, is determined to ensure that her disability does not define who she is.
“I am a woman. I have a disability. I am a university graduate... a sister... a daughter. We have to stop pigeonholing people, because we are more than one label… I’ve seen this before with my sister, Naomi, who has Down Syndrome and now I am living it,” she says, adding that she is grateful that her condition was diagnosed later in life, which means she did not have to grow up with a label like her sister had to.
For Samantha it all changed on March 21, 2018.
Her day started as usual. She went to work in the morning and, as she was walking up the stairs, she started experiencing strong chest pains and lost consciousness.
“I was in and out of consciousness. My colleagues called the ambulance and I was rushed to hospital for emergency surgery. It turned out that I had an aortic rupture and I was minutes away from dying,” she says.
She suffered a rupture in the aorta – the main artery that carries blood away from the heart to the rest of your body.
Before that day, Samantha never had any indication that she might suffer from health problems. But, after several tests, she was diagnosed with Marfan Syndrome – a disorder that affects connective tissue, the fibres that support and anchor organs and other structures in your body.
“I embarked on endless check-ups. As the weeks passed and I heard nothing, I started to take it for granted that I was fine. Then, one day in March this year, the cardiologist shook me back into reality – my aorta was growing again and I would need more surgery,” she says.
In July, Samantha went to the UK’s Barts Hospital where she underwent another major operation that involved adding a graft to her aorta to reinforce it and avoid a potentially fatal rapture.
After the operation, she realised that she was not seeing from her right eye – she had suffered a mini-stroke during surgery that impacted her vision.
“That was where my journey with disability started – I lost most of my vision from my right eye. I can see a little bit from the corner, which can be distracting,” she says.
It turned out that I had an aortic rupture and I was minutes away from dying
“One minute I was a healthy young woman doing whatever I wanted without any thoughts, and now I’m cautious about everything. I’m on medication for my blood pressure, as high pressure can cause my aorta to rupture.
“I am a very passionate person, so I had to learn to tone myself down due to my blood pressure. I’m still learning how to live with this.” And so are the people around her.
“At times, I might not see someone walking on my right side and brush by them. This happened to me during one of my hospital visits, and I almost tripped an elderly woman.
“Since I look perfectly healthy and, being a young woman, many assume that I am, I get some nasty looks when this happens,” she says.
Despite all this Samantha still considers herself fortunate.
“After my first operation, I was told I was lucky to be alive. After the second, I was told I was lucky not to have lost my vision entirely or ended up partially paralysed due to the stroke and in a way I feel lucky that I was diagnosed with this syndrome later in life. Having a diagnosis is good as it allows for me to be treated.
“However, the fact that it happened now means I could live my life without a label determining who I am.”
Samantha has always been a social activist on issues of gender and minorities.
“My sister Naomi, 19, has Down Syndrome so I was always passionate about this subject and I now work at the Faculty for Social Wellbeing as a research support officer,” Samantha says adding that she is also a social policy graduate with a Masters in Creativity and Innovation focusing on social innovation.
As she has seen with her sister throughout the years, through her work and now from her personal experience – society tends to label and pigeonhole people.
This was the subject of a recent webinar organised by the Faculty for Social Wellbeing and the Commission for the Rights of Persons with Disability – on intersectionality.
“The concept is that individuals are all made of different aspects. I am a young woman, I have a disability. I experience life differently to another young woman with a disability because of all the factors that come into play, such as my socio-economic background.
“What I am trying to say is that we cannot treat people based on the perception that we have, that is brought about by a label put on them,” she says.
“We need to acknowledge and address stereotypes – like, for example, that people with a disability don’t have sexual desires.
“We need policies and services that cater for this.
“So, for example, services that do not just cater for people with disability as a whole but that factor in other aspects of their being – such as a person being gay, having a disability. We need to stop putting people in boxes because we are all so diverse – and this is a beautiful thing.”
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