INTERVIEW: Amanda Lukoff vs. The R Word

Speaking to Amanda Lukoff it is hard not to be caught up in her passion to change people’s attitudes. Lukoff was born in the 80’s as one of a set of triplets. Their parents already had a daughter, Gabrielle, who had had been born with an intellectual impairment called Down Syndrome. In the 80’s if you had an intellectual impairment such as Down Syndrome you were quickly written off, described by doctor’s as ‘retarded’, ‘mongoloid’, a ‘vegetable’.

Attitudes may have improved somewhat since then, although we arguably have a long way to go, but at the time people with an intellectual impairment. Many were seen as shameful mistakes, ostracised from society, sent to homes, forgotten about or never spoken about except in hushed whispers amongst family, friends and neighbours. People with an intellectual impairments, and indeed many with disabilities in general, were never expected to achieve and were at best given jobs as letter fillers or basket weavers.

For Lukoff’s parents this was not how they saw their daughter or how they wanted her life to turn out. “We grew up in a fairly unique family dynamic.” Lukoff told me. “We were raised to accept and love our sister [Gabrielle] for her abilities. She was not defined by her disabilities.”

The ground breaking moment for Lukoff came when, she explains, in a story she often tells of being “in first grade, when I was 6 years old, I was asked to bring in a ‘Show and Tell’ item… I decided to bring in my sister and show my classmates that there was nothing to be afraid of, that [Gabrielle] was the same as everybody else and had the same hopes and dreams.” This Lukoff describes as her “first moment as an advocate” for Gabrielle. “I wanted to show my classmates that my sister was just like everybody else and that there was nothing to be afraid of. But also that she had the same hopes and dreams as everyone else.”

Although medical terms such as ‘retarded’ were used in the 70’s and 80’s to describe people with intellectual impairments such words soon took on a new meaning and became a fashionable way insult people. The word started partly to be used as an insult for saying someone or something was stupid or worthless, but also as a way to insult disabled people and people with intellectual disabilities. As Lukoff grew up she saw this trend grow and saw the effect it had not only on her sister and her family, but also on other people intellectual impairments. “Everytime that word [retarded] is spoken it marginalises and dehumanises an entire population of people” explains Lukoff.

Lukoff says that at first she was upset and insulted by this new definition, but then became curious “How did a medical term morph into such a derogatory, hateful word?” So she decided to explore this phenomenon. “Growing up I knew one day I would combine my passion for filmmaking with the love and pride I have for my sister, and for individuals like her, and feel I am the right person to tell this story because I have first-hand experience of the power and impact of the r-word.”

It’s an issue is becoming more and more relevant in popular culture and public discourse, Lukoff argues. “But this is not just a disabilities-rights issue,” says Lukoff, “this is a human-rights issue. Every human being has the right to be treated with dignity and respect. I am confident this film will be a step in that direction.”

However, Lukoff doesn’t simply want to lecture people, but to present the arguments and create a discussion. “We just hope that we will make an impact and people will start to change the way that they think. That’s all that you can hope for.”

Lukoff has set up a fundraiser on Indiegogo: “The cool thing about the crowdfunding campaign is that you can donate $5, or $5000, and you’re involved, regardless of how much you donate. That’s the thing about making films in this day and age. You can get in at the ground level of the making of such an important project.”