What do you think it would be like to be asked by a complete stranger, “do you had friends?” What about if this stranger asked, while in your home at 6:30 in the morning? While you had bed hair and coffee breath.
Not the best start to anyone’s morning. This week Peta reflects on if the treatment she has experienced by nurses and disability support workers is not actually ignorance but discrimination. She goes on to reveal the most heartbreaking question she has even been asked.
Peta [00:00:02] Hello and welcome to The I Can't Stand Podcast, the podcast answering questions about what life is really like when you have a disability. My name is Peta and I'm the host of this podcast. This week is going to be a little bit different rather than answering a question from you. I'm going to be answering your question. I wish I never got asked, but I get asked all the time. I hope you enjoy it. So here we go.
Peta [00:00:38] Have you ever been asked whether you have friends? Yeah, like do you have friends? Yes, it's a pretty stupid question, but I get that question a lot.
Peta [00:00:54] That simple question has brought me to want to talk about the fact that I'm most likely to experience discrimination in my own home. I'm most likely to be discriminated against in my own home by the people that I'm paying to come and look after me.
Peta [00:01:14] Now, before I go any further, I want to say there are so many good, qualified, experienced, caring, lovely people out there that have chosen to be in the disability sector, that help me live my life to the level of independence that I desire. With that being said, when I have a new carer, that's set to come the feeling of dread at the bottom of my stomach is palpable. It's a perfect storm for an awkward encounter. Let me explain.
Peta [00:01:50] When a nurse or a carer comes into my home, I want you to understand that I first got myself out of bed, put myself in my wheelchair, taking myself to the toilet, poured myself a cup of coffee, and I'm now about to answer the door at 6:30am in my pyjamas with bed hair. That in itself would be awkward if it was the Uber Eats guy. But the person I'm about to answer the door to is about to see me naked in about three and a half minutes.
Peta [00:02:27] When a new person comes to my door, that has come to help me get ready for my day, get off to work; I don't often know what this person looks like or even know what their name is. It's very common for companies to just tell me that someone's coming at a time and to expect them. I just have to open the door and hope that they're not an axe murderer. It's a very common practice in the care industry that I think needs to change. Piled on top of that, the person themselves is coming into an unfamiliar environment as well. They're going to be greeted by a woman in their pj's at an ungodly hour of the morning, not exactly the best start to the day for anyone.
Peta [00:03:19] Within minutes of entering my home I've sussed out whether I think they're legit. I've lent their name and sort of got a vibe of what my morning is going to be like. I show them around my home, I explain how I need assistance and [before I know it I'm now I'm looking at them while I'm] completely naked in the shower. I'm completely naked in the shower and we're still going through awkward small talk.
Peta [00:03:49] Being naked in front of a stranger no longer really bothers me as long as I can keep up a conversation and pretend that I'm not actually naked. This is when they often decide to ask me the questions [while I'm] naked, wet and feeling a little cold. And they're not gentle I'm just getting to know you questions either. Sometimes they like the shock of a car crash happening in slow motion and happening all at once.
Peta [00:04:24] They could say,
Carer [00:04:26] "So, do you have anything on today?"
Peta [00:04:29] "Yep, I have work."
Carer [00:04:33] "How do you get there?"
Peta [00:04:36] I drive.
Carer [00:04:39] "Wow, you're lucky to have a car and live in a house like this."
Peta [00:04:45] Look, I know she's right, I'm very lucky, but it's very hard not to say "I'm sorry, how did you get to work today? Do you have a car?"
Peta [00:04:56] Like I said before, the most common question I get is the do you have friends question. I hate this question. For some reason, I feel fraudulent when I have to explain that I actually have friends, particularly when I have to name them individually. So I now I manage that issue by having a massive display of all my friends on a wall. Not needy or creepy of me at all.
Peta [00:05:22] So while most of these questions seem pretty harmless, when they're asked of me almost every time I have a new person in to come and help me, they are really tiring and they make me wonder whether it is discrimination, because if well if any of you guys ever been asked by a complete stranger whether you have friends?
Peta [00:05:49] There's one question that's really stuck with me. I once had a nurse ask me,
Nurse [00:05:58] "Why do you have your period?"
Peta [00:06:02] She was asking me because she was surprised that I was fertile, that I still have my period because all the clients she'd work with had been sterilised. No, this question wasn't asked in 1965, which wasn't acceptable at the time either. I was asked this when I was 17 in 2007.
Peta [00:06:27] I reported her, of course, but it does worry me that someone with a disability understanding would ask me something like this. I can't lie, it was a very traumatic experience. I was in my teens, I was still figuring out the world and with that question, I felt like my identity wants and desires were unusual, if not socially unacceptable, for someone like myself. I knew that wasn't right, but if that's what society thought I realised, I had a big battle on my hands.
Peta [00:07:07] I inherently feel I constantly need to prove myself that I have intelligence, that I'm loved by family and friends, that I have a feeling social life overall, that my life isn't sad. I don't feel sad or sorry for me. I think it's because I don't want them to think that I don't have value, that I'm not someone just taking up space. I want them to think I'm all intents and purposes pretty normal. I emphasise how much I love clothes, interior design, architecture, eating out, going to parties and being pretty social. I don't know why, but I think society is somewhat being taught that those are things that someone with a disability isn't a part of or doesn't like. So I feel the responsibility of showing the nurses that the definition of who I am is positive, and I hope that I can take away a bit of that positivity with them.
Peta [00:08:18] The moral of the story is it's really weird having to invite strangers into your home. I don't think I'll ever get used to it. And the level of discrimination I face, even though it's not direct discrimination, really does affect me and worry me. I hope by being passionate about this podcast and helping people understand what it's truly like to have a disability will help just a little bit. So go on, ask me a question, because let's face it, I've had so many weird questions, you do pretty well to be even weirder.
Peta [00:09:04] So if you would like to get involved with the podcast and ask me a question, there are three ways you can do that. One, you can follow the show on Instagram @icantstandpodcast and message me through there. Two, you can email me at firstname.lastname@example.org. Or three, you can contact me through the website at www.icantstandpodcast.com.
Peta [00:09:31] I can't wait for your questions. If you would like to write or review the show, you can do it on whatever platform you're listening on. Thanks so much for your time. I hope to have your ears again next week and I'll see you then.