Living with Dignity/ Sandra Kaltoum

Stella Young passed away on 6 December 2014. Stella was a 32-year-old comedian and journalist who lived with a disability. She had osteogenesis imperfect: a genetic disorder characterised by bones that break easily, often from little or no apparent cause. She described herself as short statured and lived most of her short life in a wheelchair. However, despite living with what many of us would classify as a harsh disability, Stella had a positive spirit and challenged our perceptions of life and how it should be lived. 

Stella hated pity – mostly because it was very unnecessary. She did not believe that she needed to be pitied. She enjoyed life, despite its difficulties and criticised people who only saw disability through the eyes of their able-bodied selves. It is heart wrenching to hear some of the experiences Stella recounts in her articles. They make me question the insensitivity of society generally towards any difference. 

In an article entitled “We are more than the sum of our genes” Stella recounts an incident on public transport. A woman approached her: "Excuse me," she said. "Do you have Osteogenesis Imperfecta?" When Stella confirmed that she did, the lady responded, "I was pregnant with a baby with OI and I had a termination." Then, after a moment, she took a deep breath and said, "I made the right decision." 

This incident highlights the common perception that a life lived with a disability is a life not worth living. Stella challenged this perception every day. She did not set out to be people’s inspiration but, because of the example of her life, it was inevitable that people looked to her for comment on issues of life and often respected and esteemed her opinions. 

Stella Young

I am sure we have all heard it said by someone that if they were pregnant and they knew their child would be born with a disability, they would terminate their pregnancy. Stella’s example highlights the immense value and dignity of all human life: every child, no matter their disability, has the right and potential to lead a great and fulfilling life. Although Stella says that the choice is for the parents, she highlights that her life is worth living and, as the title of the article says, “we are more than the sum of our genes”. It is inspiring to hear of somebody who was not shamed by social expectation and dared to stand up for what she believed in. 

Stella also spoke out against euthanasia. She sympathised with those that wanted to “die with dignity” however she also rightly pushed the onus onto us to ensure that those that feel helpless are given the opportunity to truly “live with dignity”. In her article, “Disability… a fate worse than death,” Stella comments on the parallels between those born with disabilities and those who develop debilitating illnesses over time. She remarks that although life is not easy when we rely on others, “perhaps what we should be asking is, if these services and supports were guaranteed, and we could be assured that we wouldn't become dependent on our family members for assistance, would people still see disability as a fate worse than death?”

Issues of life and death are highly divisive. Any view needs to be analysed with sensitivity. I am glad that Stella was brave enough to voice her view and that, particularly in recent commentary, this view has been widely respected. 

I know that Stella often joked that she did not want to inspire people… but, without a doubt, she has inspired me.