The Intersection of Parenting and Ableism - Part 1

Content warning: Some mild language and mentions of ableism

In the first part of the season 2 premiere, Mary sits down with fellow disability advocate Nina Tame to discuss her disability journey, how having a disabled child helped her find beauty in her own disability, being a disabled parent to both disabled and non-disabled children, and the misconceptions she faces from the non-disabled community.

Nina Tame is a disability advocate, writer, and content creator from the UK. She uses her Instagram account to debunk outdated societal myths about disability and the ways ableism runs throughout herself and her life. Her experience of growing up disabled and parenting a disabled child is a continual influence that runs through her work. With wit, passion, and lots of wheelchair selfies, Nina’s work explores the nuances of the disabled experience while contributing to the growing, diverse, and brilliant online disabled community.

You can follow Nina on social media here.

The Politics of Disability was named Best Interview Podcast at the Astoria Film Festival in both October 2022 and again in June 2023.

Transcript

[music playing as Mary speaks]

Mary: Hello everyone, and welcome to season two of The Politics of Disability. My name is Mary Fashik. I am the founder Upgrade Accessibility and your host. The road ahead is still a bumpy one and in fact, may be a bumpier one.  So, buckle up extra tight and let’s go.

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Mary: Hello and thank you so much for joining me today. Will you please introduce yourself to the audience?

Nina: I am Nina Tame. And I am a disability advocate and writer, content creator. And my pronouns are she/they. And it's so nice to be here, Mary. Thank you for having me.

Mary: Nina, thank you so, so much for doing this today. You know how much I love you and I admire your work, and just everything about you…your aesthetic. You’re just amazing. So I'm really, really excited to be having this conversation with you today. I’ve been asking all of my guests about a defining moment in their disability journey, because we all have them. We all have that moment where we have to kind of step back and reflect and think about something that happened. So will you tell me about a defining moment on your disability journey.

Nina: So, I've got four children and my third child was born with spina bifida, which is the same condition that I've got. And up until that point, very much, you know, my internalized ableism–wow. I didn't identify as being disabled, you know, just terrible. Really just absolutely didn't like the way I looked or anything.

And then suddenly in this moment of seeing my disability on him and it looked beautiful on him and it was like, “Oh, okay, so if it looks beautiful on him, then maybe it can look beautiful on me too.” And also, “I don't ever, ever want him for a minute feeling the same way about his body that I did for like 36 years.”

And it was just this real moment of me having to examine everything.

Mary: I loved that you said it looked beautiful on him. Because disability is often portrayed as this ugly, nasty thing. And being disabled is beautiful. 

Nina: It is beautiful. And we see disability everywhere. And you see disability in nature. And the definition of it isn't like, “Yeah, well that means that means that something is ugly. It's like when people say, “Oh, you know, I'm fat.” And someone goes, “Well you’re not fat. You’re beautiful.” And it’s like, “No, no, they’re different. They’re not the same thing.” And I think, you know, people are so used to disability as being this negative thing that must be an insult.

And therefore, a disabled body is a negative thing. When, as you say, you know, they are beautiful. All of it, I think, like scars and amputations and just, you know, these differences. I just think they're so interesting.

Mary: Everybody’s body is different. And your body looks different than mine. Your scars are different than mine as well. Talk to me about when you decided, and why you decided, to be open about your scars and things like that.

Nina: So, I was born with like this sort of large lump on my lower back. And then they did surgery on it when I was about three. So then I was still left with this big lump that had a huge scar running through it. And I remember the first time somebody told me it was gross. Like I think I could have only been about maybe five years old.

Was at a friend's house, bunch of kids, everybody was getting changed, playing fancy dress. And a kid just pointed at it and was like, “Ew, what's that?” And I remember thinking like: “What are they talking about?” And then I was like, “Oh, okay, so that…that's, that's a gross thing then.” And it's just, just like that, just as simple as that–that idea that this difference is gross.

And then my disability kind of settled down until my teenage years, and basically because of my nerve damage in my spine, like, I've got sort of neuropathic feet and legs, which means I can't feel them. It's a little bit like a diabetic. Things sort of take a lot longer to heal up. I’m more prone to infections and stuff like that.

So then when I hit sort of 16, I suddenly began to get a lot of cuts and infections and I had my first toe amputated. And I remember it was just like my little toe. And I look back now and I think. “Oh gosh.” [laughs]

You know, I remember at the time it just being so devastating, just this one little teeny toe. And I’d like broke my foot and they didn't know because I couldn’t feel it, and it healed in a sort of different shape. So basically, sort of over the years my feet were just, yeah, a very different shape. Lost a lot of toes. I had this scar on my back. And it was all this stuff, but I was still walking unaided.

So, for me it was like, okay. So, it was like my scars and the fact I was incontinent were like the only things that kind of gave the game away, that if somebody saw those, they would know that I was disabled. Because for me it's like I knew I was disabled, but I didn't want to admit it. And I didn't want other people to know, because my ableism was just really, really bad.

So I think, yeah, as soon as kind of Clark was born, it was very much, “okay, I need to work on this” because he's never going to hear me say something bad about my body and think he should feel like that about himself. And then a couple of years, maybe three or four years after he was born, I found the disabled community on Instagram and I'm not even sure how now.

It was like I just sort of stumbled upon it. I think it was either Keah’s disabled and cute hashtag, or it was the babe with a mobility aid. It was something like that. And suddenly I just saw all these other disabled people talking about their bodies and displaying their mobility aids proudly and like these really hot, sexy, disabled people.

It just challenged everything. And, you know, I stumbled upon the social model of disability, and then I started reading about different models of disability. And suddenly my brain was like, oh, wow. And just undoing years and years and continuing to undo years and years of all this stuff that I thought I knew. And it was like I'd spent all this time hiding parts of myself for other people's comfort, and it's too exhausting. There’s too many other things to be stressed about, and to feel genuine anxiety about, as a disabled person. And my body, I thought, I'm just not going to add that to the pile because I get to decide how I feel about it.

And if I say it's hot, then it is. Because that's why I think.

Mary: I love what you said. And I think so many of us–we do, we just stumble upon our community. And we don't know how we found them. We just find them and we’re like, “Oh, okay. This is where I belong.” Cause for me, I had been avoiding it my whole life. I never want to be lumped in with disabled kids because growing up, kids assume if you’re disabled that you have an intellectual disability. But there’s nothing wrong with having an intellectual disability. But my own internalized ableism…I didn’t want to be lumped in with the disabled kids because I thought that was a bad thing.

And it took me til I turned 40 to realize, “No it’s okay. This is who I am–a part of me. And it’s okay to claim my identity as a disabled person.” So I think it’s wonderful that so many of us have just stumbled upon our community. And we grow these friendships, and it’s wonderful. You mentioned your son. What happens when you go out with your kids? And one: you're a disabled mom. And two: you’re not only a disabled mom, but you have a disabled child. Talk to me about that. 

Nina: Well, I use a wheelchair full time now, but previous to that we both wore exactly the same leg brace. And just the looks that we would kind of get sometimes. And I could just see the judgment, like people are like, “Oh, you bred. That was irresponsible.“  Do you know what I mean? Like, you know, no one's ever actually said that out loud. But that's my presumption. Because, you know, we all know what the kind of narrative around disabled people having kids is.

And, you know, as somebody with spina bifida, if you've got spina bifida and even if you haven't…If you are a pregnant person and you go to your doctors or you're planning to have a baby, it’ll be very much pressed upon you to take folic acid. Prevents spina bifida and there’s a lot of this language around spina bifida being this horrendous thing.

And I did take folic acid with all of my kids, and three of them haven't got it. And obviously one of them has. But it's like the first thing that the doctor literally barked at me after I had the baby was, did you take your folic acid? And I just, like, burst into tears. And it's like this kind of notion of, “Oh, you know, you've given this horrible thing to your child.”

But actually, I never felt like that when I had him because I think he was just wonderful. And he wasn't wonderful despite having spina bifida. He was wonderful, all of him, and his spina bifida is him. So for me, it was like spina bifida isn't this terrible thing. It's a thing. It's a neutral thing. And sometimes it's challenging and sometimes, you know, it can lead to funny things and frustrating things and whatever else. It's this sort of neutral thing.

But, you know, to other people, I'm like, worst case scenario, you know, I'm the person who passed a condition on to her child. Isn't that awful? So I think there's like a lot of judgment, but now I'm using a wheelchair if I’m out with the kids. Then most of the time it’s just sort of presumed that I'm not the mum anyway.

We were at a farm and Cary, at the time, was my youngest. He was in a buggy next to me and my wheelchair. I don’t know where Jase was. Jase was off somewhere else with the others. And somebody had come over with like this live chick and went to give it to him.  

I’m like, “Stop. Please don't give him that. He'll eat it.” And she just looked at me and just completely ignored me and gave him this chick and obviously went straight and tried to put it in his mouth. And she just sort of snatched it back and walked away. And I was like, she just didn't even consider that I was his mum. Like, how could I possibly be a mum and be in a wheelchair?

And I've got four kids and with my two older kids I wasn't using any mobility aids. And when I used to go around on the school run and stuff like that, like naturally, you know, you chat to other parents, and make friends and all of that.

And since using my wheelchair, I mean I avoid doing the school run now. And I'm lucky that my other half does it. But the times I do do it, people just sort of…yeah, it's very lonely. I'm just there in the playground in my chair, just like, “Oh, no one's talking to me.” 

Parenting settings and medical settings are the two places where I feel the most ableism. And sort of feel like that kind of bad disabled that other people can make you feel in shitty situations and access can make you feel.

Mary: I know for me, when I was like late teens, early 20s, somebody asked a friend of mine, “Can Mary have kids?” And then it was like, “Well, how is she going to take care of them?” It was this assumption that: one, I could not have kids; and two, even if I could, how was I going to care for them? And Cerebral Palsy is not something that you typically pass on your child.

So I could very well have a non-disabled child, but people assume that my child would be disabled. And how would I care for them and what would I do? And it’s this awful assumption that disabled people don’t have a right to procreate when there are plenty of non-disabled people who should not procreate. [laughs] It’s ironic to me that they think we’re the ones who shouldn't procreate when so many of them should not procreate. 

Nina: That is so, so true. And I think as well, it kind of wraps into these kind of gender typical expectations. And I could be wrong, you know, and I always feel free to be corrected by anyone. But I feel like a disabled man who was planning on having a baby or whatever wouldn't be given that same sort of, “How are you going to do it? How are you going to do it?”

Because there's this expectation, the, you know, the mum, the woman is going to do all of this. I'm using really gendered language, as in these kind of typical ideas. You know, like Jase will get heralded as a hero because he does the hoovering and makes the packed lunches.

And it's like, but why should that be something that I'm presumed to do? Like, it's just nonsense. There shouldn't be these roles. And I think there's this sort of expectation that you're supposed to be doing all the caring, you know, if you're in this kind of gender-typical relationship, male/female, husband/wife/kids type thing, that the woman is supposed to be doing everything.

So how can you possibly do that if you're disabled? And I just think it just highlights how narrow our views are about what family looks like, what gender looks like, and what relationships look like and everything. And I think what disabled people often bring into these situations, whether it’s just parents or partners or whatever else, is something that everybody would benefit from.

You know, I look at how much even over the last couple of years and people having to slow down and kind of looking at the sort of time that we kind of naturally live on. I don't if I'm making sense, but that only becomes a problem under this kind of capitalist sort of society. But, you know, you look at like the best bits about lockdown and stuff like that and people relaxing into their hobbies.

And I just think there's so much. You know, I look at my kids and how empathic they are and just the understanding they have about sort of different marginalized groups and things like that because they’re growing up. And you know, we're talking about these things, how they impact us and other people.

And I think, you know, disabled people bring so much to the table when we look at certain inventions that we wouldn't have if it wasn't for disabled people. But yet, we are always written out of the conversations and underestimated and everything else.

Mary: Talk about your partner and how he is obviously such a “hero” for being with you. [laughs] And I say that very, very jokingly. Talk about being with someone who is not disabled and the assumptions that people make about your relationship and just everything in general.

Nina: People assume that Jase is a hero and that we must have this kind of very one-sided relationship where he does everything and I'm just like this I-don’t-know just sucking the life out of him every day. You know, when he kisses me in public, I can just see people looking like trying to work it out.

Like, is he taking advantage of her? What is going on? It’s, again, just all these sort of presumptions. I think that's why people don't think I'm a parent because it's like, “Well, you know, you don't work. So, your body doesn't work. So how can you possibly be a parent?” And there's loads of assumptions like that. And you know, although obviously he does a lot of the physical stuff, I still am the one who's in charge of most of the mental load.

He's getting much better at taking some of that as well because you know, it's a lot when you're the person who's just having to organize and think of everything. But, you know, we both do our fair share. We both take care of each other. And, you know, I think when you're in a relationship… I can only speak for myself, but there's a lot of stuff that comes with being disabled that is pretty intimate and it brings you pretty close.

And some of it can be like stuff that I would've deemed like horrifying before. You know, whether it's like incontinence stuff or whatever else. But for us it's just like brought us closer and it's stuff we can laugh about. Like, we've got no inhibitions with each other at all. And that just leads to just such a nice intimacy that I've never had in any other relationship. You know, and I think that sadly, though, as much as I say, he doesn't deserve a medal. He doesn't. But, you know, there are a lot of people that face so much ableism off of their partners. I've been in horrible relationships where I've had my disability used against me and it's just really horrible relationships. So, I know that, you know, there is a lot of arseholes out there that people, you know… Whenever I've spoke about it on my stories on Instagram and stuff and the stories I hear of sort of my younger friends were single and still out there dating and stuff.

It's like, Wow, they're just some absolute awful, horrible arseholes out there. But I think that, you know, in a way your disability can become a bit of like an arsehole detector really. And sort out the sort of decent people very, very quickly. And I think, you know, everybody makes mistakes. You know, I still say things sometimes that are really ableist and somebody will correct me and say, “Well, that's not a very good term.” And then I never use it again.

You know, I think everybody's learning and growing and of course, there's always space for that. But, you know, the ones that are just not worth it and are just horrible people who are going to just yeah, just use your disability against you and all of those things.

Mary: And I think we have to point out what you said. That also goes for a non-romantic relationship as well. I live with my best friend. And prior to the pandemic, I was running all the little small errands. Like if we needed one or two things from the store, I would run and get them. And I'm the one that does most of the cooking in the house and makes sure the bills are paid on-time, and all of that.

And now with the pandemic, her responsibilities have grown. Because I’m not able to go out because I’m high-risk for COVID. But when we would go out together, people would tell her “Oh, thank you for taking care of her. Oh, you’re taking care of her. Thank you for taking care of her. What a good friend you are.” And it's like, okay, you assume that this is not a 50/50 relationship or that I am not participating in this relationship, which I do. And it’s just this awful thing, especially in a religious setting. Like I don’t attend church anymore. But when I did, they would always, like, pat her on the shoulder, and be like: “Thank you for taking care of her. Oh you're such a good friend,”...when I was the one who would drive us to church.

Nina: I did a reels about it tonight, about the whole, you know, sort of prom-posal thing when it's a disabled person involved, and how praised people are for just hanging out or being friends with or being married to a disabled person. And everybody's always focused on the non-disabled person. And it doesn't occur to anybody to think for a minute: what we are saying about disabled people in that moment is that they are such a horror show, such a like subhuman species, that we have to thank the people who are being nice to them. Like, sometimes it just sort of hits me, Mary, and I think: “I spend my time making videos on educating people how to interact with me. Just a human person saying, ‘Hey, this is how you should treat me.’ Like it's so bizarre to me. 

I remember watching Crip Camp and being so blown away by it and feeling so seen and everything else but also occurring to me, “Wow, that was that long ago and actually how much more have we really got since then?” You know, eugenics is still, as we've seen in the last years, is completely acceptable. Even in polite society, now, it's acceptable to debate the value of a disabled life. And I'm making my silly little reels thinking, “Ooh, okay.” It’s a lot.

Mary: We’re all out of time for this episode. I know, I know. Just when things were getting good, too. That just means you’ll have to come back for part two.

[music playing while Mary speaks] Thank you for joining me for this episode of the Politics of Disability Podcast. As you navigate your journey, remember: disability is political; disability is messy; disability is not palatable--nor does it have to be.

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