Nicole Telfer (she/her, disability and inclusion practitioner): Parents often find themselves in situations where they have to talk about their child in front of their child. Sometimes the language of disability is still really negatively focused, and it talks about the things your child can't do. But thinking about the language that you use in those interactions is really important, because it can really impact how your child sees themselves and how they feel about themselves.
Jax Brown, OAM (they/them, LGBTIQA+ disability educator): So much of the language of diagnosis and the language of the NDIS is this medical deficit language. The impact of that deficit narrative of disability on children that are engaging with therapists or the NDIS or other kind of special supports in their lives of course has an impact on how that young person or child is feeling about their body or mind and who they are.
Dee (parent of Max and Oscar): If you think about how you talk about a child when you take them to the doctor, you're talking about usually what's not working. You're talking to allied health professionals. When you're talking to the NDIA on goal setting, you're always talking about the bad stuff. I hate it because no one ever gets to know his amazing strengths. All they hear about are the things that aren't working and they're not working because we haven't quite figured out how his brain is working about that thing.
Jax Brown: As a parent, I see the totality of who my kid is and any parent does that. We see the positives, the lovely, beautiful things about who they are. If they happen to have disabilities, we see that as part of who they are but not all of who they are and definitely not an entirely negative thing. So stepping into a space where you have to articulate who your kid is and the barriers that they face and all the things that they can't do in a very deficit, negative way is really hard for parents to have to think about their kid like that.
Nicole Telfer: Finding ways for your child to have a voice in those conversations in whichever way works best for them can be really valuable.
Caz (parent of Sam): When you're looking at Sam finding his voice and finding his ability to request the things that he wants and have his own needs met, it's something that we are working on. We've personalised things to Sam. We've given him the ability to have some confidence in, if he does this he will get what he's trying to achieve and the repetition will actually teach him that he can have a voice and he can choose things that he wants to do, and a method for actually making that happen.
It's a more recent thing that has come about because prior to a year or two ago, Sam wasn't trying to express his voice. Developmentally I think he was quite a lot younger but he's now at a point where he absolutely wants to express his voice and he wants to be heard. And now it's about us finding the method for him to be heard.
Dee: I try to make sure that when he comes with me to the doctors, he gets an opportunity to speak to say, his paediatrician and tell her how he's feeling. But I also make sure he has noise-cancelling headphones and an iPad to concentrate on so I can talk about those things that she needs to hear but that he doesn't need to hear himself spoken about in those terms. I also find with Max that sometimes talking when he's in the room but not in the conversation, actually plants ideas. So it's a really good way for him not to have to engage with an issue but for him to then have the space and time to think about how he might approach the issue. So we're very conscious of helping him maintain his dignity even when it might be a situation that's not very dignified.
Jax Brown: One of the things that I think parents can do to support the development of their child feeling good about all that they are, disability included, is really having conversations with their kids about what is their experience of their body and mind. Finding value in the difference that their child holds that isn't just defined by the therapy appointments you might have to go or the interventions you're doing. Talking to them about the lovely things, about whatever difference or disability it is that they've got.
Finding ways to connect them in with community and supportive people. Don't underestimate the power of a really good role model or older person in a younger person's life. To really have that impact of going, 'This is who you could become. This is the kind of choices you could make. These are the opportunities you could have.' Also giving that young person a space to talk with somebody that shares that identity with them in a way that maybe they don't want to talk to their daddy parents about.
Nicole Telfer: Talking with your child about how everyone is different and everybody has different strengths and interests can help them to develop a positive sense of self and feel good about themselves.
Dee: I like to phrase everything is a challenge rather than somebody can't do something because I don't believe there's anything that anybody can't do with the right supports in place. For example, Max cannot hold a bicycle upright. He's nine years old. He can't ride a bike. So we frame things in terms of Max, 'Do you want to ride a bike? Yes or no? Yes, great.' So what do we have to do to make that happen? We don't talk about what he can't do in this moment. We talk about how we can give him the skills to do what he wants to do.
Jax Brown: The language that we use around identities I think is really important, because it gives us the capacity to start to articulate who we are in a positive and affirming way that is no longer negative and full of shame but thinks about what value do we have? In a similar way that we might talk about LGBTIQA+ identities as being affirming and as being part of the diversity of what makes us human, we need to talk about disability in a similar way.
Nicole Telfer: Being aware of what your child is hearing is really important because children with disability become adults with disability and we want them to be strong and confident and secure in who they are.