Fear, love, metal ceilings and fighting for your rights: A tuakana-teina kōrero with Dr Huhana Hickey and Noēll Ratapu

Beth: Welcome to a kōrero between Dr Huhana Hickey and Noēll Ratapu. My name is Beth Awatere, I work at The D*List and I'll be facilitating our conversation. Our korero today is a part of the Deepen* kaupapa and we will be exploring how we exist as disabled takatāpui in te ao Māori. I’ll hand it over to our lovely guests to introduce themselves.

Dr Huhana: Kia ora koutou. Ko Waikato me Ngāti Ira me Ngāti Whakatōhea ngā iwi, ko Ngāti Tāhinga te hapū, Ko Weraroa te marae, Ko Karioi te maunga, Ko Whaingaroa te moana, Ko Huhana ahau. I’m Dr Hu. What am I? I’m a human rights lawyer, shit stirrer, trouble maker consultant - a whole bunch of things. I’m just me. I don’t have pronouns because Māori didn’t use pronouns, prior to colonisation. For me, I’m Huhana, that's simple. Yeah, that's where I sit, so, that’s who I am. Kia ora!

Noēll: Hi, I’m Noēll Ratapu. My iwi is Rongowhakaata and Te Aitanga a Mahaki. I come from East Coast, Gisborne. I’m now living in Southern California receiving life saving treatment for my disability. So I’m kind of a medical refugee because I can’t return home. 

Dr Huhana: Bugger.

Noēll: Yeah, so I’m a Queer disabled Māori neurodivergent artist and my expertise is in digital art. That’s my main passion but I am also an activist and a writer.

Beth: It’s so lovely to meet you both. Our first prompt today is: what do you think creating an accessible space for Takatāpui tangata whaikaha looks like?

Noēll: OK, so, I was thinking about this. In an ideal world, I would just be able to like, go on Facebook or Instagram. And just see all these events during Pride and be able to go to any one of them that I want to choose. Without having to worry about if it's accessible or not, or if my needs are being met. But that's obviously not the reality that we live in. And that sucks because there's so many events I would want to go to. Especially last year, I really wanted to go to this drag event. I was so excited because my favourite drag queen was performing, and I got so excited I was ready to buy tickets and then realised that it was up a flight of stairs and there was no elevator. I was so disappointed. I've yet to come across any type of accessible events here, where I'm living. You would think that in California they would include that, like it would be (because there's a lot more people who have disabilities here). But that's far from the truth. 

With me being neurodivergent, going to Pride parades can be very overwhelming and very loud and just over stimulating. So I would want an environment where all of our needs are met. Where it's not like a huge sensory overload. You know we're put at the forefront of this event. What our needs are, like: accessible bathrooms, making sure that people with neurodivergencies [have] their needs met as well, [with] sensory spaces that are separate. If you get overwhelmed (but you're not ready to leave just yet). You don’t want to go home so having a separate area where you can, you know, calm down for like 15 to 20 minutes and then come back out and rejoin. I don't want to end up getting so overwhelmed and then having to leave. Having that option at events would be so helpful. And also, me being in a wheelchair having these events and my view of things, you know being at ‘butt level’, so everyone's in front of me blocking and not moving out of the way. So I feel like if we have a designated area for people who have disabilities or in wheelchairs or need to sit down or put to the front, and just having nothing obscuring our view to watch what's going on. I think all of that is very important. But again, we’re not thought of when it comes to these events at all. I just want to have a space where we are included.

Dr Huhana: Well, I'm a senior now, so I'm over 60, so I've been part of the community for decades and everything she [Noēll] says, we've been asking for, for that long. Uh, even longer. But I was here before it was even acceptable. When we were doing our meetings in hiding. All of the things that you guys take for granted. My son takes [it] for granted. My grandkids take [it] for granted. Now, they're non-binary, one’s transitioning. My son, he’s 37, and he's engaged to be married to a lovely guy and everything that they take for granted is everything we didn't have. 

So for me it's all those things that you're wanting, but we've got the memories and the trauma from before we got the acceptance in the communities and so that makes that really hard. But we've given up. We don't attend many things now because you get exhausted every year asking for accessible options.  

I mean, I'm a lawyer, but I'm also a writer. I'm a cartoonist, a writer, poet, all those things. Those are the things I'm exploring now as I've got more time and energy and I'm moving away from worrying about earning. Even though I'm broke and poor- to just wanting to live a quality of life before I go. Leaving something behind for my grandkids. Unfortunately it's like that being Māori as well. Trying to get into spaces that [are] inclusive is very hard and it's the same in the Queer community. When I was in Hamilton, I asked why all the lesbian meetings were held upstairs [as you know] I’m in a wheelchair. They said: “Ohh, we asked our Deaf friend, she said it wasn't an issue.” I knew the person they were talking about and I'm like... [laughs] ... wheelchair [pause] steps. You just get tired of having to explain the obvious when it comes to the idea of accessibility and disability. 

Noēll: I feel like in our communities it’s like pick your poison, we’re already accommodating [the] needs towards Queer people. We're opening up a welcoming environment for these people. So when you ask for an environment that's inclusive for people with disabilities, they're like, "well, I guess that's too much". You know, we're already considering one group of people. Why do we have to consider both? And I've had that conversation with multiple people, especially event organisers. I've been told, “well, I'm sorry, you know?” “I'm sorry that you're not included, but it is what it is, you know, and it sucks.”

Dr Huhana: Yeah, that's the frustrating part. If you think about it, in the 60s, there was a real movement of Civil Rights. It was the rights of people of colour, the rights of women, but the rights of disabled [people] was even behind them. Really the Americans took it where the activism was quite strong. And I often use the analogy that, you know, Rosa Parks by sitting on the bus where white people could sit when they tried to move it, and refusing to move was fantastic. But for us, we can't even access the buses half the time. So we're looking at having to chain ourselves on the outside. Or, people [say to me]  “oh, you've broken ceilings.” I'm going, “No, I haven't.” I said “Women have broken through glass ceilings now, reaching leadership. But we've got metal ceilings. We're still punching through the metal, to get to the glass so we can break the glass, to get equity. And people don't see it. Abled people don't see it.”  

The Queer community as well has an issue around image, and image is very important. We scare. Some of us actually- our wheelchairs - I have people, not so much now - but, 20 years ago, they would cross the street, rather than go past you. But it's fear that drives the exclusion, not love. And we need to be educating them. That, you know, by excluding us, you're actually being hypocritical and you're doing exactly what was done to them (to our community as Queer people) prior to you know, being accepted. If they were to accept us then it becomes one where we can collectively fight against rights. But by excluding us, they limit our rights. They see us as a blot of the perfect image of what it is to be Queer. We blot that, we dent that. We put our image in there and they don't like it. So we have to show them that we can be just as. You know we got excluded from cabarets and nightclubs - [young people] are, but their friends carry them up in their wheelchairs and include them. And, that's what's starting to break that (barrier) down. So we need to sort of find a way of visibilising, showing those discriminations to the Queer community. So that they then can understand- that we are them, they are us.  

Noēll: I totally agree. What really resonated with me is when you said people fear us. I can't tell you how many situations I've been in where someone literally would cross the road- like you said- or, not even make eye contact with me. I've had kids scream at me and point and run away and I'm like, ‘Oh my goodness!’ Even being in an environment where there are other Queers. No one comes up to me. I've been told that I'm intimidating. They're too scared to come up to me because they don't know what to say. They're afraid of offending me or saying something wrong. I've had this conversation with multiple people and like I will correct you, but I will never do it in a mean way. Yes, I will correct you if you are being ableist towards me or if you say something wrong. I’ve had people say to me ‘you’re more than your disability,’ [or]  ‘I don’t see your wheelchair’. But then you're not seeing me. If you don't see my wheelchair and you don't see my disability, then you're not seeing who I am. And like, what if I say I don't see your gayness? What if I said that to you? So I think that's a huge part [of it]. It's fear-based. 

I follow this person called Aaron Rose Phillip. She's a transgender model who is on Vogue and she's absolutely amazing. She's confident in her body. She's everywhere now and they're making those types of events in the fashion industry more accessible and she talks about how you know these events that she tries to go to when it comes to Pride - are the ones that are inclusive. The fashion industry is starting to get more inclusive because we've been preaching, that's what we need. We want to see all bodies represented in this area, but still when it comes to, you know, Pride that's where it lacks. I haven’t even been to Pride and that sucks. Like I was supposed to go last year, but I was told by someone that they didn't want to have the burden of looking after me. I'm like, who said that you had to look after me? No one asked you to look after me. Like I just wanted to be included. But you went with someone else. Yeah. It sucks. And I felt like I've been excluded my entire life. 

Beth: I'll jump in here and shift us to our next prompt, which is how important does it feel for tuakana to lead the way in the disabled Queer space? And where does this sit with teina, who might have new or different approaches to the barriers we face?  

Dr Huhana: I think one of the weaknesses that we have in our community- [the] disability community and Queer spaces, is the Queer spaces do history like Charlotte's Museum here in Auckland, but they don't have disabled Queer sitting in there in any dominance. So we get excluded by being blanked out. So many of the ones now fighting issues like transport's becoming a big issue again, and I'm looking at it going yeah we tried this in 2000, we tried this in 1990. And they look at us going ‘what do you mean, why didn't you succeed?’ And I say ‘you’ll find out.’

It's as though they are doing it for the first time. I’ve had first time parents thinking they're the first time that a disabled person has raised a child. I’ve raised my son, he’s disabled, I’m disabled. There’s many of us who have raised children over many years, but they think that there’s something different now.

I think what we have to do is we do have to visibilise better, particularly in the Queer community around disability. We need to do that through art, writing you know all of that is a way of doing it, is a way of expressing. 

So the only way forward - in the same way as being Māori and trying to educate Māori about disability - is we need to educate the Queer community.

We exist, so we need to show them.

Noēll: I was also pondering this question, I am new to the LGBTQI community. I've been out for three years. And around the same time, I started embracing my disability. Because it was something that I was ashamed of for a very long time, just like a very internalised ableism type presence that followed me just because of you know, growing up and being around teachers who put so much toxic positivity in me.  

And you know, it's just... I feel like listening to older generations of people who are living with disabilities and the Queer community is very important. We have to be their voices now because obviously, like you [Huhana] said, you're tired. You're tired of repeating yourself over and over and over again. And it's just like history is just going to keep repeating itself. We're just going to keep being excluded. We're not going to be at the forefront of anything. 

I really look up to Judy Heumann. I don't know if you've seen Crip Camp.

Dr Huhana: Yes

Noēll: But she's an absolute inspiration for me. She was the one that kind of made me really acknowledge who I am as a person and just learning through that. There's so much I need to learn more about when it comes to history, you know, like Stonewall and all of that kind of stuff. 

But like you [Huhana] said, I think it's up to us now to really step up our game and be even louder than - I mean you guys were just as loud - but I think we need to be even more loud. You know, even if it comes to us, you know, screaming our lungs out, you know, ‘include us, include us, let us be here, let us be known, let us be seen.’  

Dr Huhana: The rangatahi have a different role. You take what we've done, and you go to the next level. What we did, we did for that time. You've got a different level now, you can express differently, you can come out differently. You know, people with the pronoun issue, that's different. The trans issue is coming under fire because it's more visible than it used to be, because there was an acceptance for a time. As a result, it's now created a backlash. Your voices are going to be important because they're different voices, different generation. It's your future. My future is done. My job is to mentor, awhi the rangatahi. I've got to be there to be at their back. When they feel the need to speak out. So that they know they're not alone. Our job is to awhi you.  

Beth: I have one last question for you both and that is where do you think the responsibility sits for creating an accessible space? With the disabled person or with the host?  

Noēll: I was watching some videos of some events. I think I was in Washington, especially when it came to the Pride parade they were sending beforehand - like I think it was a couple of months beforehand - they were sending polls out, like, you know, polls that people can put their needs and writing it out and like implementing that all into this Pride thing. Sending notices out a week beforehand, you know, to wear odourless soaps and to not overwhelm yourself with perfumes because you know people who have smell sensory. You know, I personally don't have a problem with that, but a lot of people on the autism spectrum do. Like it's overwhelming and you know doing polls is a good thing because you can. I know that we can't say all of our needs, but I think that's a start. And can adapt from there. 

Dr Huhana: I think America's got the difference in that they've got the American [with] Disabilities Act, there's no Disabilities Act in New Zealand. The Accessibility Act is rubbish and was rubbish from the beginning. Unfortunately they didn't engage disabled lawyers to help them do it and as a result it's a mess. And, the Government picked it up, and they may well go with it, but it's not gonna make a difference. But, because America has the ADA, people are able to take legal action and get things implemented. We can't. The responsibility lies with the State to encourage community organisations and provide funding [and] resources. They can do that through Whaikaha, our new Ministry [of Disabled Peoples] because that's their role, it's what they should be doing. Then you've got community. 

For Pride - it’s getting through to them. I mean I've tried and tried and we've managed to get some accommodations, but it's not consistent. But, the Big Gay Out, we were there last year and we took a corner at the far end to get away from everyone. But then people started crowding around us. We just wanted a bit of shade and a bit of a place where we could sit and enjoy from a distance. Be able to go from (and come back to). 

So it's knowing who's organising and getting disabled [people] onto those organising groups. And ask them to please, no demand, that they include [us]. There's a very large number of intersex people who have disabilities. There's quite a number of trans people who are disabled. I know drag queens who've got cerebral palsy who love to dress up and drag and wince down the Main Street. You know it's- they, they love it, but they can't because it's not accessible for them to be able to engage in that way.

Beth: Ngā mihi Noēll and Doctor Huhana it has been so lovely to hear about your experiences. Thank you for joining us today and I look forward to chatting more with you both in the future.