"It is often assumed people with disabilities need extra help, or that we'll be burdens," writes Carly Findlay. Photo: Stocksy
Ellen spent three months looking for a flatmate. Ellen is 24 and in her honours year of her undergraduate degree. Her cat makes her house a home. She works with kids as a therapy support worker. She dreams of travel and when she finishes uni, she hopes to travel to India and work there for a while. She's smart, reliable and driven - a dream flatmate.
During the search, she lay awake at night worried she would lose her beautiful home - she can't afford the bills alone. She advertised on flatmate Finder websites, Gumtree and at the university. She also shared her story on my blog which led to coverage by the ABC in Adelaide. Ellen had 59 inquiries about her house but not all led to meetings. Most of the people who came to inspect her home turned her down.
She believes people didn't consider her as a potential flatmate because of the way she looks.
Carly Findlay: "Would you really stop someone in the street and pray for them if they look different?" Photo: Justin McManus
Ellen has a condition called Goldenhar Syndrome. She tells me it affects the growth of bones in her face and makes it asymmetrical: "So I have one eye and one ear." She's reluctant to tell people the name of her condition because of the tendency for people to google it. Researching a disability before meeting an actual person with it often shapes negative perceptions about disabled people. Ellen says no two people with Goldenhar Syndrome look the same because it's such a diverse spectrum.
The perceptions and expectations of people with disabilities are low. It is often assumed people with disabilities need extra help, or we'll be burdens; and sometimes, people without disabilities can be embarrassed to be seen with us. It's human nature for people to confronted by someone with a visible difference. It's not easy to be on the receiving end of a shocked reaction, even when the intent isn't malicious. And to be subjected to continuous rejections and unconscious bias like Ellen endured is wearing.
Apart from the worry of losing her home, Ellen worried that she was more disabled and disfigured than she realised.
"It wasn't always easy, I see it as a process of wounding and healing. Resilience wears thin if we don't have enough support and love around us to boost us and counteract the 'bad' experiences.
"Some days, my resilience was worn thin and I was filled with worry and anxiety that kept me awake for nights on end, about whether I was kidding myself, maybe I really was more disfigured and disabled than I realised. Maybe I was in denial. Maybe I just didn't want to admit how confronting it must be for others when I open the door and invite them in to inspect my home."
Her confidence was shattered further when potential flatmates expected a lower rate. "I have also felt immensely pressured into lowering the rent and bills because people felt they should be compensated somehow", she says.
Paul Bird from the Real Estate Institute of Victoria says "Tenants who believe they have suffered unfair treatment or are being discriminated against currently have the protection of a range of legislation, including the Equal Opportunity Act 2010.
"Estate agents and landlords are generally guided by a tenant's capacity to pay and look after the property, rather than any other factors."
However, it's not always easy to pick discrimination. Similar to the barriers experienced by people of colour who are looking for flatmates or to book a room on Airbnb, rejection because of disability and visible difference can be casual and discreet. It may be discrimination, but it's hard to prove if the reason for rejection isn't explicitly stated.
Ellen told me she doesn't believe she could argue discrimination because of the subtlety of the knock-backs she received. "It's easy for people to point to a thousand other reasons why they didn't want to consider my place and on some occasions it may not have been my differences, but it's hard to know," Ellen says. "I think it often was, given the reactions I was getting."
To Ellen's relief, she found a flatmate in February.
"I love my flatmate, she's one wonderful lady and I'd like to think I help her out as much as she helps me out (she's learning English and is new to Australia), but of course part of me still worried that she thought of me as a charity case."
Ellen's flatmate mentioned that her parents worried she'd have to be Ellen's carer, and moved in believing she'd have to care for Ellen and do chores. That bothered her. "But after three months living with me, she knows that I am independent and capable. We share chores, we swap recipes and cook for each other, it's equal."
Ellen is not alone. Twenty six year old Brianna has a rare, severe skin condition called Ichthyosis (a different variation to mine) and described the flatmate experience as "horrible".
"All my flatmates were through friends or who my boyfriend was currently living with. Luckily I never needed to put myself out to the public for rejection", she told me. However, living with them was a problem.
"I have had people complain about my skin in the washing machine, in towels (they were mine and if they were using them, what right did they have to complain?).
"[They'd] mention to me that they can't sit on the couch because I had left a patch of skin behind when sitting down."
Brianna became so self-conscious around her flatmates that she holed herself away in her bedroom. She felt she had to cover up because they didn't want to see her dry, flaky skin. "I felt like I couldn't be myself in common areas. And being on the couch, every time I got up I look to see how much of my skin had accumulated and made sure I am not leaving a trail behind me."
Living with a flatmate can be hard, even without a disability or visible difference. There might be disagreements about noise levels, the hot water can run out before the third flatmate showers, and there's often one flatmate whose partner stays over five nights a week but doesn't contribute to the food bills. Those challenges are compounded when flatmates judge and make us feel uncomfortable for a part of us we cannot control.
Brianna has since moved out of share houses and in with her boyfriend. "We haven't looked back," she says. "Getting rid of our housemates was the best thing that happened. Our relationship is better and we are happier. I don't get judged first thing in the morning whilst eating my breakfast in my pyjamas or before I shower. Most people don't see me before I do my morning skin prep, before I am looking my 'best' for the day."
When looking for a new share house to live in, don't be deterred by someone's appearance or disability. Open your mind to the possibility of making a great new friend.
Ellen encourages flatmate hunters to ask polite questions about their potential flatmate's disability rather than making assumptions or saying "it's too hard". She advises people to ask questions about chores, bill splitting and traits in a flatmate. "By doing that, you are giving the other a chance, and you may just find a match."
Carly Findlay is a writer, speaker and appearance activist. Follow Carly on Twitter @carlyfindlay