I’ve said it before and I’ll say it again: disability is a family issue. But all too often, that means misguided portrayals of disabled kids as “burdens,” the assumption that no family would want a disabled child, and insistence that nondisabled family members always know best. What about all the other ways disability can play out in a family — as a source of empowerment, empathy and togetherness — particularly across generations?
To find out, I talked to Scout, a 22-year-old Māori queer person and aspiring politician living in New Zealand, who had this to say about love:
The first person that would pop into my mind is my great-Nana. She’s 93 (nearly 94), she has dementia and she lives in a secure dementia ward in a rest home that’s airy and bright and just like when she used to live with us. She’s been this one constant source of love and ginger loaf since I was tiny, and has watched me grow up. Because of the dementia, she’s the only person in my life who I will let call me by my dead name. Which is pretty big for me! Out of all her grandkids and great-grandkids, she remembers me the most often. I love the levels of unconditional love and optimism she spouts every single day. I love her fond stories about her childhood, and I love hearing them for the 14th time in a row, too. I really cherish every moment I have with Nana.
Read on for more about forging a political career while disabled, the importance of interdependence, and some excellent family lore.
Tell me more about yourself, and especially your political ambitions!
I identify as takatāpui; that’s a word in Te Reo Māori (the Māori language) that these days is used as an equivalent to the word “queer.” So it means a Māori queer person. I use the term to describe my gender and sexuality all at once — without it I’m “somewhere sort of like a boy but not a man but also really gay but not into guys.” I’m disabled and mentally ill. I believe in a world where we can be all these things and still live safely.
I’m really good at communicating with people simply and clearly. I want to use those skills for good, so I’m going into politics. I’ve already run in one election — last year, I ran for mayor and city council and I actually came within 180 votes of election, which was remarkable given my age and budget.
That’s incredible; as an American, I can’t even imagine a young, brand new candidate coming that close, so I’m really impressed. You have a lot to be proud of!
The neat thing is that in New Zealand, because our Parliament is made up of all these different people from different political parties, being elected is actually pretty achievable here. You don’t have to be a privileged millionaire. In the next ten years I see myself in Parliament, with a portfolio in something like social development. I specifically want to represent the trans community and the mentally ill community in New Zealand because we have no one in Parliament who can truly amplify what we have been saying for years.
“Part of the reason I’m trying to shift my community work from this activist, volunteer level up to being an actual politician is that I can affect change in a way that is better for my disabilities — I can work with my strengths so that I don’t exhaust myself doing everything else.”
Politics is a notoriously demanding field — lots of traveling, long hours, staying on top of multiple issues at once. How do you negotiate your disability, which can also ask a lot of you, in all that?
The political party I’m in wants to see a Parliament where we can have members who jobshare. Their focus is that it would be great for parents who deserve to have a voice but need to raise their kids too. I think it’s a fantastic idea, but I’m coming from the place where if I could share a portfolio and divide my Parliamentary responsibilities between me and another person with a disability, we could manage our lives so much more sustainably.
Several of my friends are members of parliament, or MPs, and I literally just sit here and watch them work from 5 AM to 11 PM — or later, some days, and they don’t get days off, and I see the impact of that on them behind the scenes. It isn’t a sustainable role for anybody and I think our attitudes towards work are so inherently capitalist and need rethinking. Taking a day off shouldn’t be the end of the world! Productivity doesn’t trump health!
Personally, too, I hold multiple volunteer positions where I have an incredibly high level of responsibility with zero compensation for that work, and it’s really difficult to do in a sustainable way. I can’t afford the doctor’s appointments, medications and supplements to keep myself well, even in a country with almost universal healthcare. Part of the reason I’m trying to shift my community work from this activist, volunteer level up to being an actual politician is that I can affect change in a way that is better for my disabilities — I can work with my strengths so that I don’t exhaust myself doing everything else. Maybe it’s a pipe dream, the idea that Parliament could be easier on my health, but at least being reasonably financially compensated for my work would enable me to access the healthcare I need to do the work.
Do you come from a political family?
My immediate family aren’t particularly political — my parents actually have polar opposite politics to me in many areas. My little brother is getting more and more interested, especially as this year he gets to vote for the first time, but neither of us was really raised in political spheres. I think I get the politics from my dad’s side of the family; his grandma, my great-grandma, used to speak about politics on a literal soapbox, and she and her husband were both staunch unionists — much like me! And I recently discovered that on dad’s dad’s side I’m related to the guy who’s been mayor of a city further south since 1993. He’s pretty well-liked! So it’s in my roots, at least.
Speaking of your roots, I want to hear more about your great-Nana and your relationship with her. Do you have a favorite story of hers?
My Nana Vera is a little 93-year-old English woman who grew up in London and watched Queen Elizabeth playing in the backyard at Buckingham Palace from her doorstep. She made excellent ginger loaf back in her day, and now I have the recipe too. She came to live with us when I was maybe 13, and she was always busy — she loves “cooking, knitting and sewing,” that’s her mantra — but she also would ask my mum to give her literally anything to iron and she would stand in the lounge at the ironing board ironing scraps of fabric or tee shirts or pants just because she enjoyed it.
One day my family went out to the lake on our boat. She stayed home, but she made us a bacon and egg pie to have for lunch and when we cut it open, she’d left the fork that she’d mixed it all up with inside. When I tell her that story now, she finds it absolutely hilarious. Nana has lots of stories — the clothes she and her siblings would make for the rats that lived in their London house, sleeping overnight in the tube during World War II when London was being bombed, the swimsuit she knitted herself, and when she dove into the water and stood up to find the woolen swimsuit stretched down to her ankles. We hear these stories over and over again now, often with details swapped out for those from another story, and I think we all cling onto the stories now because that’s going to be what we have left of her soon. The stories and the ginger loaf.
And you said you’re the great-grandchild she remembers most?
Yes — she doesn’t recognize me anymore because I’m an adult now, so when I see her and she asks who I am, I have to say “Hi Nana, I’m your granddaughter, [deadname].” Last time I saw her, she talked about being the one who gave me that name (even though my parents were actually the ones who did), and it was a bit of a twang to the heartstrings because she doesn’t know me as Scout. She knows me as this awkward 10-year-old with messy hair, and I desperately want her to know who I am now because when she does get snippets of me, she is so, so proud of me and how far I’ve come. She doesn’t know about my disability or chronic illness, but sometimes sitting with her gets really difficult because part of dementia is when people start to get confused, and they get paranoid and scared, and it’s much like psychosis. I’ve experienced psychosis quite a bit, I know how terrifying it is, and I’m such an empath that I really struggle to know that I can’t just take her hurt away.
That’s really interesting, because nondisabled people say that kind of stuff to me a lot — “wishing they could take the pain away” or whatever — and I’m wondering if that’s true for you. That sentiment can mean such different things, depending on the context.
Yeah, wanting to just magic the hurt away is a weird feeling to be coming from me! But at the same time, we’re talking about literal distress here — like emotional hurt. And I think for many of us as disabled folk, we’ve come to terms with what we experience — but Nana’s experience of dementia is sort of different in that she doesn’t always know what’s happening or who and what she can trust. We can be empowered about disability at the same time as acknowledging that some of it really, seriously fucking hurts and no one should ever have to experience it. Given that I’ve experienced psychotic episodes where I have no idea what is real, what is not, and what I can trust and hold with me, I would not wish that terrifying experience on anyone and it breaks my heart hearing Nana echo those same feelings. There is a lot that Nana cannot do anymore and a whole lot that she struggles with; at the same time, she’s an incredible baker, she knits pretty well, she always says the right thing even when she’s not very with it that day. She is overflowing with compassion for everyone and everything.
On her good days, she’ll tell me how much I’ve grown; on her bad days, she’ll tell me it’s “lovely to meet you!” I love how excited she is to see me, every five minutes.
“I’m glad she doesn’t know, in some weird way, because it means I have one person in my life who just assumes I’m competent unconditionally.”
You mentioned that she doesn’t know about your disability; was that a conscious choice, or has the timing just never been right? Do you wish she knew?
She hasn’t consistently remembered who I am for the last five-plus years, whereas I only became disabled in the last three years. So somehow it’s not really come up because she’ll just forget five minutes later. I’m glad she doesn’t know, in some weird way, because it means I have one person in my life who just assumes I’m competent unconditionally — and being disabled, y’know, not often do you get to just do things without people second-guessing whether you’re capable of them.
Absolutely, and I think that’s a great point to make here. It sounds like becoming disabled gives you a lot of empathy for her, but also a clear understanding of the different ways disability and illness can manifest and change your life.
Definitely. Since becoming disabled, I’ve had to rely on people for things a lot more. And I think a lot of the time the role of your best friends can be blurred into the roles of your carers. And with that, your carers and doctors and your whole team become part of your group of friends too. It’s fascinating to me how those relationships have helped me learn what is and isn’t genuine.
I have a lot of trouble trusting people enough to feel loved, but when I do, it’s because I can read someone’s genuineness in how they interact with me. Working in politics, y’know, all my interactions with people feel so fake some days. I love genuine conversation, I love when someone trusts me and when they just have that feeling about them that I can trust them too. I love when people don’t expect me to do what they’re capable of doing, when people are conscious of my limits but don’t decide those limits for me.
“I really despise this idea that dependence is ‘inherently bad.’ Humans are pack animals; I’m so sure that we have never been this doggedly independent in our whole history.”
I think the idea of “dependence” can get unfairly vilified, even in otherwise progressive spaces and among other disabled people. Dependence is not inherently a bad thing or a sign of failure, and can in fact be a source of empowerment, I think. Do you agree, or not, or have anything you want to say about that?
I really despise this idea that dependence is “inherently bad.” Humans are pack animals; I’m so sure that we have never been this doggedly independent in our whole history. People are so individualist in their approaches to everything now, even in progressive spaces. I prefer more communal spaces, I like the ideology of “it takes a village to raise a child,” and I apply that to how I exist now. There’s no point beating myself up for needing a friend to come sit with me on tough nights, or for always having to ask a friend to open difficult jars for me. That will just turn into some gross circle of self-loathing, and I’m not here for that.
I think we have to be careful with dependence — when it becomes a situation where the other person can’t do anything for themselves anymore, then that’s a bit of a problem. But it’s important to be able to depend on things like facts and the knowledge that someone can help us and the people we surround ourselves with. We need to support each other to make positive change together. That also means we have to take self-responsibility, look after ourselves, and remember that means asking for help when the job gets too hard.
So with all that in mind, what does love mean to you?
Love means that you can put your trust into someone and mutually agree that you will keep each other safe to the capacity that you’re able. Love is not conditional; genuine love is someone who sticks around even after I’ve been stuck in bed three days, or blown them off four times in a row because I can’t cope with leaving the house. Love is when someone understands that my behavior at a given point is out of the ordinary, maybe I’ve socially withdrawn myself, and asks if I’m okay without getting angry at me and taking it personally. Love is trust, safety and home.
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