Spinoff Parents columnist and advocate for children with disabilities Tessa Prebble writes about ableism and why the able-bodied community need to stop ignoring or excusing it.
Picture this: you’re looking for a place to live for you and your partner and your three year old daughter. You look for months and then finally find something that is perfect, except that the landlord seems reluctant. After weeks of to-ing and fro-ing with the landlord he finally tells you no, he doesn’t want to rent the house to you and when you ask why, he tells you it’s because your daughter has special needs.
He’s right. Your daughter does have special needs. She is Autistic and has cerebral palsy and epilepsy along with juvenile arthritis. She’s three and an exceptional little human being who is happy and determined and works hard every day of her life, and she has disabilities.
He tells you he doesn’t want to risk you neglecting to pay your rent because you are pouring all your money and time into your daughter. Your daughter’s needs are now weaponised against all of you.
It’s hard to picture this scenario as an abled person with abled children, because it seems ludicrous. It seems exaggerated or over the top. Even as the mother of a baby who had severe disabilities, it seems so foreign to me that those disabilities could be a mark against us in that sort of situation. Who would discriminate against a three year old girl and her family? But before you discount, or assume there’s more to the story, before you excuse the landlord’s actions, imagine that as a person with disability, this story and so many others like it were all too familiar – not shocking, but expected.
For the family in question, this rejection – for no other reason than that their daughter had disabilities – was devastating. It turned what was once an intangible fear over whether their daughter would be accepted and included in society, into a very real reality. It made her parents realise that the world sees their daughter very differently than they do, and that no matter how hard they fight, they would lose some battles for her.
There’s a moment, or many moments, for the parents of a child with special needs where you realise your child is viewed differently by the world. If your child has a visible disability, it can be in the form of looks of pity at the supermarket. When I used to take my daughter Eva out, and I did it a lot, I could feel people’s stares. They would look at her eye, with its blueish bruising, and they would see her NG tube that she needed in order to eat, and they would stare. I would ignore them and look at her and talk to her as if we were the only two people in the world. If your child has behavioural issues, that look of disdain might be directed at you yourself, because without knowing the full story, onlookers will assume you are a bad parent. That meltdown in the shopping aisle, which you know is caused by sensory processing issues, will be seen as a bratty tantrum of a spoilt child. There are the stares and the sideways glances. You tell yourself that they just don’t know your child, your child is beautiful, and valuable and everything they should be.
And you know you are right, but your assurance is not enough to convince the world of that. After all, for many of us, it took some getting used to ourselves. For many of us finding out our child had disabilities, or multiple disabilities involved a process of grief. Grief for the child we thought we would have, grief, because we know this world is not kind to people with disabilities, and now we cannot look away from that reality.
For people in the disability community, the abled community’s shock at these instances of ableism is frustrating. Frustrating because they’ve been trying to tell us this all along. They’ll look at what I’m writing and wonder why it took this story being told by an abled white woman, the parent to a disabled child – and not a disabled person herself – before anyone listened. They’ll shake their heads, because we should have known about this discrimination already. This shouldn’t be news. And they’re right.
But until it isn’t news, I’m going to keep telling it. Because this isn’t the only instance of someone I know being discriminated against like this.
A friend of mine has a series of medical issues that make mobility a challenge. She has a wheelchair, and despite sometimes constant pain, she gets by each day with grace and humour and grit. Recently, she flew four hours to another city for a series of lengthy medical tests. Thankfully she left her two young children behind with family, so it was just she and her husband on the flight.
They arrived at their Air BnB, exhausted and in pain after air travel which restricted her movement and caused her health issues to flare. Within 30 minutes of arriving at the accommodation they received a message from the owner. The owner had seen them arrive on their security camera and was concerned about them staying at the house. They told them they would be there shortly to discuss the matter.
The couple tried to assure the owners they would be fine and the accessibility was not an issue, but the owners didn’t listen and turned up at the house to ask them to leave.
They claimed the couple had “deceived” them, as if a disability were something that needed to be declared and they had somehow provided false advertising in not stating it outright.
The couple were stunned and researched their rights. They found that AirBnB has a policy which forbids owners from declining a guest based on “a perceived or actual disability”. Despite this, when contacted initially the AirBnB representative sided with the owners.
Knowing they were in the right, and that the law and the company’s own policy recognised that gave them some comfort, but in that moment, with hours of medical appointments to prepare for the next day, the couple left the AirBnB and found a hotel. Fighting that fight at that moment wasn’t feasible or healthy, even when they knew it was something that should be fought. They didn’t want to stay in the home where they weren’t wanted and where her disability was seen as a deal breaker for the owners.
After further following up and creating a scene on social media, AirBnB did eventually get it somewhat right and acknowledged the issue. But it took creating a scene and reaching out to contacts for this wrong to be righted.
The sharing economy is notorious in its ableism. Uber drivers have been noted to speed away when they see a passenger with foldable walkers, and AirBnb is known for rejecting renters based on disability. A Rutgers University study found that from 3,800 AirBnB lodging requests, sent by researchers, travelers with disabilities were more likely to be rejected for a potential stay.
While 75% of abbled applicants requests were granted pre-approval, the numbers fell to 50% for people who said they were blind, 43% for people with cerebral palsy, and 25% for those with spinal cord injuries.
Both Uber and AirBnB didn’t take up disability policies until forced to, and even then it seems in AirBnB’s case they will still side with the owner – initially at least – when faced with an actual complaint, so how safe can we feel about those policies?
If you are disabled, or close to someone who is, these figures will not come as a surprise. For disability activists, this kind of discrimination is all too familiar.
But for many, hearing these accounts will be shocking. They seem beyond the pale, one off events that exist in a vacuum. We assure ourselves that the perpetrators in question must be monsters, so they are outliers, the exception to the rule. But they aren’t the exception, they are more common than we would like to admit, and our lack of ability to acknowledge that and see these examples for what they are is a problem.
Don’t get me wrong, these actions and events should never be something we consider normal. We should never be OK with blatant and unethical discrimination, we should always be shocked at human’s abilities to be shitty to each other. But pretending as if an instance of discrimination is unusual or an anomaly does not fix the situation. It’s burying your head in the sand, because you know that with sand in your ears you’re unlikely to hear the next instance and be forced to see society for what it is.
Instead of putting our collective heads in the sand, let’s listen. Let’s ask questions of the disability community, and listen, really listen, when they share their stories. Let’s give people within the disability community the microphone and let them tell us how it is. Let’s hear from families and individuals with disability and find out how we could make our world more accessible, more inclusive.
Let’s turn this situation around so that our shock can be genuine, instead of just ignorance, when we hear of stories of prejudice and discrimination. Let’s turn it around and ensure that people know you cannot and do not treat people this way, regardless of their disability. Let’s turn this around by finding out about this information, this news, these events, by listening to the self advocates rather than an abled white woman who happened to have a daughter with disabilities.
Because while I can stand on my soap box and preach – and I will continue to do so until these stories are so known that there is no need to preach anymore – there are hundreds of self advocates who can do it better. They are fierce and furious and they have stories to share. They need us to listen, to be open, and to change.
If you’re interested in following self advocates on Twitter, here are a few key names to watch. @carlyfindlay @emilybrooks89 , @erabrand, @dominickevans, @VilissaThompson, @Keah_Maria , @annieelainey , @DisVisibility, @Enceladosaurus , @scoutriver , @crankyautistic , @GHMansfield , @zagbah , @jaxjackibrown , @spazgirl11 , @Sblahov , @phineasfrogg , @alexhaagaard , and @Leah_McRorie .
Tessa Prebble is a columnist for The Spinoff Parents. She is also the writer/producer/creator behind The One in a Million Baby. Her podcast began in September 2015 and features interviews with different families living with special and medically fragile kids. It aims to tell the stories of those families so that those who are going through something similar can feel less alone, and those not in their shoes can learn about their lives. Follow the podcast through iTunes, Stitcher Radio or her blog. You can find Tessa on Facebook and Twitter.
This content is entirely funded by Flick, New Zealand’s fairest power deal. In the past year, their customers saved $489 on average, which would buy enough nappies for months… and months. Please support us by switching to them right now
The Bulletin is The Spinoff’s acclaimed daily digest of New Zealand’s most important stories, delivered directly to your inbox each morning.