The Purple Orange Podcast: Nice, but not really

Transcript:

[Narration] Hi, it's Carey Scheer and you're listening to The Purple Orange Podcast. Just a quick note that early on in this episode, you will hear a disability slur, and some people may find it upsetting. 

 

[Jae-Marie Jaensch] I find people tend to do a lot of backhanded insults that they think is nice, but it's actually not nice, which can be harder to deal with because that's harder to get someone to understand, then, 'hey, don't say retard'.  

 

[Narration] Today, we're going to look at how language is regularly used in ways that are harmful to the disability community. But we're not going to talk about disability slurs, because I don't think our listeners are using them anyway. And we're not even going to talk about phrases such as 'suffering from' and 'wheelchair bound'- terms that most people I've talked with who live with disability do not like because it positions everybody who lives with disability as someone to pity. And that's just not true. You can have a disability and not suffer from it. And a wheelchair- It enables you to get out into the world. It's not something you're bound to. But we're not going to talk about those things. Today, our guest is going to guide us through something much trickier; Things that people think are nice, but are actually not.  

 

[Carey] Do you want to start by introducing yourself?

 

[Jae-Marie Jaensch] Hello, my name is Jae-Marie Jaensch. My pronouns are she/her. What else do I need to say? I have a disability. Yeah, I'm a queer, disabled woman, and I'm 25 years old.

 

[Narration] So right off the bat, Jae told me the hardest words for her to handle are, 'you're so inspirational.’
 

[Jae-Marie Jaensch] To me, when you say you're an inspiration, what you're saying is I have such a narrow view of people with disabilities, that I don't think they could do what you're doing. 

I get it a lot when I'm like, oh, yes, I go to uni or graduated uni. And people are like ah such an inspiration. Okay, but, so many of us do that every day. And when I try and have these conversations of hang on, this is why it's frustrating. I'm like... The response is always oh, yeah, but I would say that about an able-bodied person who got a degree. And I say, no you wouldn't. You would say congratulations. Because you expect that of them. It's still a good thing, but you expect them to do it. And the other thing that I think is, when you say you're an inspiration, that tells me that you're going to do absolutely nothing about the structural barriers we face. There's a reason why there's not as many disabled people like in higher education, as there should be. So don't tell me you think I'm an inspiration. You're putting all the onus back on me to overcome ableism in society, rather than the onus on you to fix it. 

 

[Narration]So I've had some people say that they think it's, it's fine to use this word if you aren't using it for everyday things. So someone's won an award for being best in their field, and they happen to have a disability, go ahead and use the word. Or someone published their first novel while juggling work and being a single parent. But Jae's been too jaded by this word. 

 

[Jae-Marie Jaensch] I've got to be honest with you. I think it's always an insult. I've never had the experience where it's been said as a nice thing.  

 

[Narration] So before you drop the big 'I' word, you better ask yourself, is the reason I'm saying this just because the person has a disability? If so, it's probably more patronising than a compliment. 

Now to a different but equally troubling use of the word inspiration. Have you seen those little inspirational disability memes and puff pieces that make the rounds on social media? Like a young boy with prosthetic legs running with the caption, 'What's your excuse?' Or 'The only disability is a bad attitude.' Or one I've seen recently is a photo of a dad who is pushing his child who is in a wheelchair, and the caption said something like, 'Now there's a real father.' In the disability community, there's a term for this type of content. It's known as 'inspiration porn.' 

 

[Jae-Marie Jaensch] So I hate the 'inspiration porn.' They're objectifying someone. It's about making able-bodied people feel good, not about making us feel seen or authentically representing our lives as they should be. I also think it takes away the normalcy of what someone is doing. So the one with the father and pushing their disabled child. He should be doing that. If he wasn't doing that, that would be weird. He's helping his child get around. That's, that's not good. It should be standard. Another one, you see like little kids and they are playing with a disabled person. And people talk about how, you know, all such good, such good children. But it should be seen as that's not good to play with someone else, it should be standard. They're playing with a friend, like, all that is doing is making A) the able-bodied person feel good because they've done something out of the ordinary, which it shouldn't be. And B) they've also made a disabled person feel bad because they say, I must be a burden, I must be harder to play with. 

 

[Narration] And this stuff, it's not just hurtful, it can cause a ripple effect of harm. For example, there have been multiple viral videos on social media that show a guy without disability, or I should say, without a visible disability, taking a girl who has a visible disability to prom. And the captions on these videos, as well as all the comments are always like, what a great guy. 

 

[Jae-Marie Jaensch] That's where it becomes harmful because you say the language, if you say the language enough, and enough times, then we believe it too. So like if you're saying, oh, isn't that nice that this able-bodied boy has gone to prom with this girl who has a disability. So, that's fine, until you get into a relationship, and a partner says you shouldn't leave because I'm the only one who will love you. And then abuse starts to happen. But then they don't leave because they've been told their whole life, that there has to be someone super special, who will love you. And it could be only this person. And you know, you've won the lottery because they are an able-bodied person. So that's where it becomes harmful.

 

[Narration] There's also another type of video commonly shared on social media, which is the celebration when a person living with disability gains a bit of ability. I see wedding ones all the time. Sometimes it's the father of the bride standing up from his wheelchair to walk his daughter down the aisle. Or sometimes it's the bride or groom, who with great effort stands up at the altar. And the audience always erupts in cheers. 

 

[Jae-Marie Jaensch] I don't like some of those videos because they are saying able-bodied is better. Even if you can get a little more able-bodied that's better. And hopefully one day you'll be fully able-bodied.  

 

[Narration] Of course messages like this aren't just happening on social media.

 

[Jae-Marie Jaensch] So I recently have transitioned from using a wheelchair most of the time to now using a walking frame most of the time, and I still got very uncomfortable anytime someone would say, I'm so happy for you because you're using a walking frame. Because I get what they're trying to say. I get the intent behind it. But it makes me feel as though I wasn't good enough before. And I- because I grew up not in a religious household, but my grandma is very religious. And she had that thing of if you pray hard enough, or if we pray hard enough, you'll be healed. But that made me feel like why aren't I good enough now?

 

[Narration] Another thing Jae told me that people commonly say to her after hanging out for a while is, 'I don't even see your disability.'

 

[Jae-Marie Jaensch] That to me says there is this bad thing about you, and I don't see it. Or, I see you as a normal person. But that's implying that you don't think disabled people are normal people. I want you to see my disability. I need you to see it. My disability is entwined with who I am, whether that be negative, for example, the discrimination I experience and the internalised ableism. Or whether that be positive. If I didn't have a disability, I wouldn't be in the field that I am now. I wouldn't work with diverse communities. I wouldn't be as empathetic as I am. I'm much better at problem solving, because I have a disability. I have all these good qualities because of a disability. And so, when you try and separate those two things out by saying we're going to take this thing that we consider to be bad, we're going to pretend it doesn't exist. To me, that's offensive. Because you're not seeing the whole, you're not seeing me. You're pretending that I'm able-bodied. Because for you that's easier to deal with than seeing a person with a disability who has a distinct life experience. And they're robbing me and other people of a community. They're saying you can't be proud of your disability. You can't be part of that community, even though community is so important for marginalised people.

 

[Narration] Okay, I'm going to make a full disclosure here. When Jae said this, I cringed, because I've said that sentence to somebody. It was the first time I'd really hung out with somebody who lives with significant disability. And he was really funny. And I remember after this big old belly laugh together, I turned to him and I uttered those words. I don't even see your disability. This was years ago. But I still remember it clearly because he got really quiet. And I remember it felt super awkward, but I wasn't really sure why. And then he just changed the subject and all seemed okay. We never talked about it. But reflecting back on that moment now, oh, I realise what an ignorant thing I was saying. Because I would never say to somebody from, you know, a different country or a different ethnic background, I don't even see your ethnicity or your culture. Because that's just so clearly offensive. Culture and history matter. And who would I be to wash that away with my words like it's a bad thing? And yet, that's what that phrase, 'I don't even see your disability' is doing. So, I'm sorry that I've said it. And I will never say it again. 

Now, the reason that I'm telling you all this, is because you may make a mistake sometime. Never let that stop you from trying to connect with other people who have different experiences and backgrounds to yourself, whether that be disability or ethnicity or whatever. It is okay to make mistakes. It's what comes after that matters the most. 

 

[Jae-Marie Jaensch] The hard bit comes in you saying, I'm sorry that I did that. Or I won't do that again. Because the frustration that I feel is not from people saying the wrong thing. It's from people not caring when I tell them I need them to do something differently. That's when I feel the most disrespected. 

 

[Narration] I'm Carey Scheer and you've been listening to The Purple Orange podcast with Jae-Marie Jaensch. We'd love to hear your thoughts on this episode, and also any ideas you have for a future episode. To get in touch, send us a message or comment on Facebook, or email stories@purpleorange.org.au or ring 08 8373 8388.