Tamatha Paul on 'coming out' as disabled

Tamatha Paul (Ngāti Awa, Waikato Tainui) has always openly lived with disability and chronic illness. But things did initially feel a little different talking about disability as an MP. Eda Tang speaks with Tam about disability identity, community, and using her voice more as a disabled Māori wahine.

Watch the video interview or read the transcript below:

Eda: Kia ora e te whānau, nau mai ki tō tātou hōtaka, today we're joined by Tamatha Paul, and we're very lucky to be invited into her home in Pōneke. So Tam, tell us nō hea koe? Ko wai koe? 

Tamatha: Āe, well nau mai whakatau mai ki tōku kāinga, ki tōku āhuru mōwai. He mokopuna ahau nō Ngāti Pūkeko. I tipu ake ahau i Tokoroa, engari e noho ana ahau ki konei, ki Te Whanganui-a-Tara ināianei. He Mema Pāremata ahau mō Te Pāti Kākāriki, i te tūru o te Whanganui-a-Tara, o Wellington Central. Āe!

Yes, well, welcome to my home, to my safe place. I’m a descendant from Ngāti Pūkeko. I grew up in Tokoroa, but I live here in Wellington now. I’m a Member of Parliament in The Green Party for Wellington Central.

E: Kia ora.

T: Kia ora. 

E: He mahi tino nui ki mua i tō aroaro. Nō reira, he aha ō wawata mō tēnei tau?

You’ve got a lot of work ahead of you, so what are your goals for this year?

T: Ooh. E rua ngā whāinga ōku mō te tau. Tuatahi, ki te whakarongo ki te reo Māori i ngā wā katoa: ngā pāpaho Māori, ngā whakaata Māori, e pānui ana i ngā pukapuka Māori. Āe just te reo Māori i ngā wā katoa. And tuarua, e kōrero ana ahau e rima ngā kauhau i te reo Māori i roto i te Whare Mīere. 

Ooh. I have two goals for the year. Firstly, to listen to the Māori language whenever and wherever: Māori podcasts, Māori television, reading Māori books. Yeah, just Māori all the time. And secondly, to deliver five of my speeches in Māori at the Beehive.

E: Rawe.

T: E rua anake, but he nui ngā whāinga mōku, or ōku. 

Only two, but they’re big goals for me.

E: Pai aua whāinga!

Those goals are great!

So for those listening, Tam and I were just talking about our journeys with te reo Māori, and I think we both share the desire to have more spaces to listen and to speak and to read. So we connected with you shortly after a post that you made on Instagram. Tell us about that post.

T: So um, the post I made was, yeah, I guess it was a ‘coming out’ post to really talk about the health challenges that I was experiencing in the lead up to that operation. I've talked openly about my disabilities in the past, but not since I had become an MP. And since I became an MP, I guess my visibility, or how many people know me, has grown a lot. So for people who just had started following my mahi recently, it was a part that they didn't know a lot about. I think what made me want to do that post was probably the kōrero I was having with the doctors and nurses in the hospital at the time, and just thinking, “far out you guys are dealing with a lot.” 

E: What was the nature of the kōrero for kaimahi?

T: Umm, frustration. The way that they're having to work at the moment and the challenges that they're facing, the way that they perceive the Government, the way that they perceive their minister. And even, it was quite cool after my surgery, some of the cardi cardiothoracic specialists, I'm pretty sure – could be totally wrong on that – but they reached out, and they were like, “Hey, I was one of the doctors that was able to do your procedure, and just wanted to let you know that we are really struggling. There are not many specialists in the country that do this procedure, which is why you had to wait so long.” So, yeah, I guess, just it was quite nice that people felt that they could talk to me about what it's like for them. And I wanted to share that with people in a way that I thought people would really engage with. 

E: Yeah.

T: Yeah. And, because my procedure had been delayed twice by strikes, and a lot of my friends and whānau in the last couple years have had their own procedures delayed or cancelled because of strikes, a lot of them were quite frustrated about that. And I suppose I just wanted to put a different perspective out there about why it was OK for me. And that's not saying like, some of those procedures were a lot more serious than my one, but it was still disruptive on my life to be delayed so many times. And yeah, I guess I just wanted to put a different perspective out there about why it didn't bother me so much.

E: Did you have any apprehensions about, I guess, coming out as disabled, I guess to a newer and bigger yeah, group of observers, per se?

T: Yeah, I think people who know me know that I'm pretty strong in my identities. To some, I might not have grown up in a super ‘Māori’ upbringing, but I'm still really strong in my Māori identity. I know who I am, I know where I'm from, and I know what I want for my people. And even in my identity as, like a woman, as a Māori, as a young person – which is like fading away now – but I've always been strong in all of those identities. I know who I am, I know what I want, I know who my people are, and I know what they want, and I know how to get what they want, and I know how to do what they want. So I think to have a part, a really large part of my identity, to feel insecure in it, it's stopped me if I'm talking about it quite a bit, because I'm not so confident in that space. 

Um, in most spaces I am in, I know how to talk and use the right language. But when it comes to the disabled community and the language you're supposed to use, I'm not as sure of myself. I was afraid that if I came out and said I'm disabled, that I might be seen as someone who can advocate for every disability in Parliament, which I know I'm not capable of doing. I don't think anyone is capable of doing that.

And I also worried that people would try and limit what I can do, because they have their own ideas around disability. And you know, for a lot of people, well-meaning people, they think that, you know, I should be resting all the time, or just rest and take it easy. You know, I don't want people to be making those judgments for me. So there were layers and layers of apprehension before making that post, but I think… there was also a lot of power in showing people the reality of what's going on in my life, and that there's a lot more to it than just walking out of the house every day and doing politics, or, you know, like doing well.

E: Yeah. I feel you on that pigeon-holing of disability, especially when your condition is invisible, or you're high masking, or you've got some days that are better than others, that if you want to identify with the disabled community, that you should ‘be disabled’ and stop trying to be healthy. That's a paradox that I've always struggled with. But it's really nice just to see a super non-extraordinary example of what living with disability looks like. You're not there to inspire necessarily. I've been grappling with this question myself, but what is being disabled?

T: Umm. It's a question I avoid mentally, because I'm always having wānanga internally about everything. But I think particularly being a politician, you're always thinking about perception. Like, how will this be received? How will people perceive this language, how people perceive this look? Like you're always thinking about how other people receive what you're doing or what you're saying, or how you look and and I think I've avoided, in my head, defining what the disabled community is, or what a disabled person is, because I carry my own biases or prejudices, And I would love more space to explore, like, what different people, different rangatira in the community, how they would define it? All I know is, I'm definitely disabled. I’m like 100%! No, not 100%. But I’m disabled. You know, but that's only because I know, like, I wake up in my body, I feel that pain, I go through that day-to-day, and I'm like, “Yeah, this ain't normal. Yeah, this definitely ain't normal.”

Yeah, but I think on a basic level, like, in my eyes, you're disabled, if you like, if everyday life is, like, difficult for you, whether that's because of what you're going through or because of the way everything has been designed, because it hasn't been designed with you in mind. I've also seen that it's like a really contested area, and that there's a lot of judgement. There is that in the Māori community too, though, there is in every community a lot of judgement. And I guess my preference is to, like, stay out of it and make my own decision, like, my own mind up on that.

E: Yeah, I think any kind of minority community has that risk of lateral violence within it and across the communities as well, and the language policing, and the comparisons of who's got things better and who's got things worse.

T: To be straight up with you, the disabled community intimidates me, and I know I don't know my stuff well enough to, like, hold my own in that space. And that's a big part of who I am. Like, I want to hold my own. Do you know what I mean? Like, I want to know my stuff.

E: But for some reason, we've constructed this world of like, you need to have read across and you need to know the right language. But your experience is your lived experience, and that makes your disability unique.

T: Yeah. I guess I'm just a person who likes to, like, have an informed opinion. I’d rather not just have an opinion just based on purely my experience and my vibes. I think based on your own experience, it's all good to have your own views on like or my own views on my disability and how it impacts my life and what it's like to navigate the world of my disabilities. But I guess going into a community, you're also required to think about others and how their experiences are, and I think for me to walk comfortably or safely in that space, I just need to do a bit more homework.

E: Mm!

T: But it's also what I’ve found, a very generous community as well, in terms of the mātauranga, the sharing of those experiences and the welcoming in like, I think 99% of the messages I got after doing that post were really positive and really welcoming.

E: Did you learn anything from that post? 

T: I got a lot of unsolicited advice, which I didn't look at negatively, because I get people are just trying to help. But I did get, like, an overwhelming amount of emails of people with cures to lupus. And, “have you tried this?”, and, “I think you should try this, because this will work.” And again, it's all like I found all of it was coming from a well-meaning place. But in terms of what I learned, I learned that it was a side, it’s a part of my reality or part of my identity that I would like to share more of.

E: Kia ora!

T: Because it was like a overall positive experience. Yeah, like, there was never a time after that where I was like, “I wish I didn't share that,” or “I wish I didn't say that,” because it was so positive. And I think it was very humanising, which you don't get a lot in politics, like you are very much an object or a spectacle. So it was quite nice to feel quite human and quite seen

E: Yeah.

T: And it gave me confidence. Like I feel, I feel more confident to speak about my experience. It kind of kicked my ass in a way, to be like, “use that voice a bit more.” Like, you can use it a bit more. You've got a platform, you should use it a bit more. But also trying to be like, “don't be trying to do everything,” you know? Like, kind of in two minds, like, “speak up a bit more because this reality that you're speaking to is resonating with people.” But then I'm like, “Oh, it's another thing on the plate,” because it's like, another identity.

E: Totally.

T: Well, it's another experience that I'm speaking into. And I try not to be everything to everyone, you know?

E: Yeah.

T: But it is also a big part of my life, and I and I wanted people to understand that.

E: Yeah.

T: Yep.

***

T: I remember reading that people with lupus die young, like they die in their like 40s. And I had an auntie, but she was married into the family like so we weren't blood-related, but she had lupus, and she died at like 42 and so in my mind, I just accepted the fact that my life would be a lot shorter than others, but that maybe I'm gonna die when I'm 40. It was quite formative for me, because that is why I've done everything so young, which is like a gift and a curse. Because gift, because I'm like, I've got one life, and it might be short. So I want to do everything that I've want- like, I want to live my dreams, but on the other side, the stress that comes with doing that is also taking from my hauora, yeah. 

E: That's such a big thing to process at the age of- 

T: Yeah!

E: Were you a tween?

T: Yeah, yeah, yeah, yeah! No, hard out. 

E: Wow. 

T: But then what was tricky about it is, my disabilities haven't really started to affect me on a daily basis until I'd say the last five years. So the diagnosis was there. But then I lived a relatively normal life, like sometimes I'd get sick and it'd be a bit more hundi's than others, but other than that, it was normal. And when I started uni 10 years ago, I was having conversations with my specialist at the time that I could come off my medication altogether. So I was actually like so much in remission that I didn't need to take medication anymore. Yeah, I'll say about five years ago, this is when shit started hitting the fan, which kind of coincides with my political career as well. But it's hard to tell like, I could also be like this if I was working a different job as well, but yeah. And now I would say where I'm at now is, yeah, it affects me every day, mostly in the form of pain. There's a lot of pain, yeah.

E: Pain is both like a physical and mental thing, right? And there's only so much you can do to manage it physically. What do you tell yourself about pain in your head?

T: Yeah, pain is a biggie aye? Coz for me, my pain feels like my body's on fire. When it started being real bad, like the pain, I thought that it would pass. It would get to, like four o'clock, about in the day, every day, and then I'd just start, like my body would literally cripple. So, the pain would start in the joints, and it would also be in my muscles. And then a couple hours would pass, after four and then I, like, could not move. So I'd just be, like, stuck in bed. And it sucked, because I lived in a flat, and I was in the bottom. I was in the bottom, so they were like, stairs. So I'd be like, stuck and isolated to my room from a certain time every day. Now it's progressed to the point where, like, every morning I wake up and it's my body's like, just stuffed, and it takes ages to, like, get it ready to do anything.

The pain at first was terrifying, because I was like, “I'm never going to be able to date anyone,” because no one can even spend the night with me. Coz then from a certain point, I'm just gonna be, I'm not going to be able to move, and then they're gonna be like, “What the hell?” Like, they're gonna want to cuddle me, they're gonna want to do whatever. And I'm gonna be, I can't move, and then they're gonna be like, “What the hell? You're a freak, you're weird, you're sick. I don't want a life with you.” And that's, that was quite terrifying. So I was like, “no one's ever gonna want me. I'm broken, and I'm never gonna be better.” At the beginning, I was like, This surely must get better. This must change. But it just hasn't. 

E: How do you go about as a young person, explaining that level of pain or that level of accommodation that you need in the morning?

T: I usually just don't tell them about that. The way I explain it to people who don't know anything really about autoimmune conditions, is my body just attacks itself. So with the lupus, it thinks that there's always something going wrong, and it goes at the organs. And then with rheumatoid arthritis, it's the same thing, except it goes at the joints. And yeah, my body hates me. 

E: I guess, does that change the relationship you have with your body when it's always in pain?

T: No, because I think I have got the privilege that when I look at it in the mirror, like if I don't have hives, let's say, which lately has felt like, just, it never happens, and it sucks in summer, because I'm like, ahh, insecure about, like, you know, rashes and stuff. But I'm lucky, because when I look in the mirror, if I didn't know that I had all of those things, I would like what I saw, and I do like what I see when I look in the mirror. So I'm lucky in that sense. I think the thing that upsets me more is being like, “why couldn't I just be normal”, you know? Why couldn't I just be normal? But then I also think that I'm blessed in other ways, and that balances it out a wee bit, you know?

E: What are some of those koha?

T: That I am confident, and that I, like, feel pretty secure in who I am, bar the hauora side, I'm, like, a generally pretty confident person. I have my ups and downs. I've definitely been depressed before, but generally, my mental health is really stable. And I've got mean, like, concentration, I can, like, lock in and like, finish. 

Don't want to sound whakahīhī but do want to toot the horn of my iwi. One thing that Ngāti Awa is known for is like being onto it, especially the wāhine we've got a lot of really onto it wāhine in our iwi that work hard, but are also really onto it, and which also speaks to some of our tīpuna, thinking about Iritana and other tīpuna who were really onto-it women, and I think that's definitely a koha that we've had, is that we're, like, pretty resourceful and observant. So yeah. Those are the koha, but then yeah, but then just a little add of like, “oh, and here's a little fun challenge for you to put on top of that.”

E: Yep.

T: Yeah. 

E: Yep, you can't have it all. 

T: Can't have it all. And honestly, in all honesty, this might be toxic positivity, dunno. But like, if I were to look at it, and if someone was like, you can have none of the positives, but you can have a normal body, or you can have the positives, but you will have, your body will feel like a prison at times, I'd probably take what I have. Do you know what I mean? Because the experiences I've had in my life have been mint.

***

E: “Whaka tino rangatiratangatia tō hauora.” Mmm. He aha tērā?

What does it mean to you to “whaka tino rangatiratanga” your wellbeing? 

T: Tō hauora…yeah, I get the message. It's just that I could never, like, have that level of authority over my hauora. You know what I mean? Like I am the recipient, like I am the mōkai of my hauora. Do you know what I mean? Like, I don't have any control over it. That's a tricky one, aye, because I don't know what I could do, I don't know what, what way I could ever have tino rangatiratangatia over my own hauora.

E: Yeah.I rongo au i te pōuri o tō kōrero, i a koe e kōrero ana, "ko au te mōkai o tōku hauora."

I feel some sadness when you say, “I am a slave to my wellbeing.”

T: Yeah, that's a bit grim.

E: Yeah, but I feel that. I get that, but there's something just so basically disempowering about the fact that, you know, your hauora is something supposedly that you should be able to control completely. But when we're not able to, we're so at the mercy of the public health system.

T: Yep. And our bodies.

E: And our bodies and whatever happened to our bodies and our ancestors of the past. At a surface level, it's like, eat your five plus a day, exercise, meditate, go to sleep early. 

T: I feel like it applies really well to like preventative stuff, probably, and like your every in everyday stuff. And it could be applied to like your hauora hinengaro or your hauora wairua, but physically, like hauora ā-tinana, I feel like you're very beholden to what your body wants to do. I think that was a bit of a tough reality for me to swallow, is like I can eat the best diet according to this, and I can do all the exercises, do my medication, all of that. But didn't really stop the train in its tracks, or just made it slightly better but not, you know. And then I was just like, I would just much rather eat what I want to eat, what makes me happy

E: Totally!

T: And exercise happily, than put myself through something where I think that at the end, I'm not going to feel this way anymore, you know.

E: Yup

T: In my – what is it – uneducated and unmedical opinion, I've just found that through the people that I've met and talked to and connected with, that a lot of them are, yeah, are women of colour. But then also, when I think of my friends or family members who have some type of autoimmune something, or some kind of like persistent pain in their lives, they also have been through a lot, like they've had quite hard lives, or have had big like rough childhoods or real traumatic things have happened to them. Yeah, I'm not a medical professional, but in my observation, I think autoimmune conditions might also be like a physical manifestation of trauma or intergenerational trauma.

I think that's where, yeah, Gabor Maté has been real useful, in like, putting that into language for me. Because what he writes about feels right to me in the experiences that I've had. So I think that's like, definitely something I'd like to learn more about is the connection between trauma and the immune system, really. 

You know your immune system, I guess, when you think about it, is your physical body, trying to protect itself against physical things, but I wonder whether it's also trying to protect you from mental things, or things that you've been through or people in your life that are not good for you, whether it also tries to protect you against those things or maybe get overactive when you're not in safe environments. But like to me, that just makes sense; it makes sense that your body, even if you don't know it. Is trying to keep you safe or trying to put you into a safe space.

E: Kia ora.

T: Yeah.

E: If we were to believe that there's a link to intergenerational trauma and these conditions, how might that change the way we treat patients in a medical framework?

T: Well, I think it's less the medical framework or just in the health system, and it's more in the everyday life. And I think it requires us to slow down. Because, like, if you think about pain that is, like, specific and time limited, like mirimiri, like one of those real painful ones, or like, let's say, like a puhoro, like a tā moko of some type you can, you can deal with that pain, because you know that, one, it's for something, and two, it will be over soon. And I wonder whether, like, if we lived in a world that was much slower and we weren't required to be at mahi or every place all the time, whether that experience of pain would be just a lot easier to deal with? Because, you know, I think if I woke up in pain and was like my body says, “I can't today”, so I won't, without disrupting everything that you need to do or have on your to do list, or that you had all these meetings and all these hui and all these appointments, that would just make it a lot easier, you know. So I think if we lived in a society that was a lot slower and a lot more accommodating, that would make it a lot easier, I think. 

E: Like, I feel like, there's a lot of existential judgments you need to make when you know that you know you're always going to be sick or you're gonna die earlier. It forces you to think about those questions at a very early age.

T: Yeah, yeah. And for me, I think the own like, the biggest thing that makes me want to not just give up, is that I would like to have a whānau, and otherwise I'd just be like, “Yeah, whatever.” Like, might as well just live how I want to live, and go out whenever, you know? But I think when I'm like, when I think about the whānau that I want to have, that makes me like, that motivates me to try and, like, grab hold of destiny a bit more. But really, kind of can't. But do you know what I mean? Oh I think you kind of can, yeah, try not to be too, like, morbid about it all.

E: Mm.

T: Yeah.

E: Pātai whakamutunga. What is your disabled identity aside from what you experience medically.

T: It's a, it's like a fire under my nono. You know what I mean?

E: Kia ora. 

T: It's like, “Come on! Like, hurry up. Like you don't have as much time.” And sure, some people might say that's like, problematic, but it's, I think, served me kind of well. This sounds real cliché, but it has reminded me how like precious and short life is, and I think a lot of people don't have that fire under their arse.

E: Kia ora. 

T: So I'm quite grateful for that. It's helped me have deeper connections with other people, because I could have nothing in common with somebody, but just through that experience, we can really connect. It's brought me closer to my friends who also have, live with pain –  really closer to them. It's helped me to like, explain to my friends who don't have these challenges, one, like, what it's like in this reality, but two, that we're just as capable of doing everything.

And I think it's made me a more patient person. Cuz, I think that's one of the big things, is like, you have to be patient when you're disabled, because you don't know when you're going to be better, and you got to wait for the appointments you're just waiting, always waiting, and always not knowing. Like, I feel like there's a lot of not knowing that you have to become comfortable with. Like you might never we're talking about before, we might never know what the cause of some of these things are, we might never be able to pinpoint what in our lives might have triggered things. And you just got to be okay with that. And we might, yeah, sure, I might wake up one day riddled with tumours or something because of the lupus, but I wouldn't even know. Like, do you know what I mean? Like, I won't know, and I can't know. So you just got to be OK with that.

E: Mm.

T: Yeah.

E: Kia ora Mahuika, me ō maikuku ātaahua, Well, tēnā rawa atu koe i tō whakaaro nui me ō kōrero kia hāpai i te whānau whaikaha, me ō mahi i te ao tōrangapū hoki. Nō reira, tēnā rawa atu koe.

Thank you Mahuika and your beautiful fingernails. Well, thank you so much for your thoughtful ideas and your words to uplift disabled people, and your work in politics too. Thank you heaps. 

T: Kia ora.