The Intersection of Parenting and Ableism - Part 2

In the second part of the season 2 premiere, Mary sits down continues her conversation with fellow disability advocate Nina Tame. The two discuss advocacy burnout, the pandemic, mental health, and Nina delivers her message to 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 She uses her Instagram account to debunk outdated societal myths about disability and the ways ableism runs throughout herself and her life.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.

[music playing]

Mary: Welcome back. Ready to find out where this conversation goes? Good. Then buckle up and let’s go.

Mary: Do you ever have moments, and I have these a lot, where you’re just like, “Why do I bother? Why am I bothering to do this work, to educate non-disabled people when all it feels like is I’m screaming into this void and no one is listening to me. And why do I bother?”

Nina: Yes, all the time. Basically, once every six weeks or two months, I basically take myself to bed for a fort, or Jase ends up telling me to go to bed, because I'm so sad and burnt out and just try and build myself back up again. You know, I mean, it's a very privileged thing to be able to say that I can't think about it all the time, but I am able to stay in my house.

You know, I’ve got a nice house, nice partner, lovely kids. It's very…I'm lucky to have such an anchor because that's what I cling on to when I'm thinking nobody is listening–not even the people I love really getting it. And it can be so heartbreaking because most of the TV programs I love, the films I love, the celebrities I love, have all said something really, really ableist.

And if I think about everything, and even all my own stuff too much, then I wouldn't be able to get out of bed. And I let myself have those feelings and then I just try and focus on the community and how much we've all done for each other and how validating it is for each other. And it definitely gets through to a few people, but I have those thoughts all the time.

Like, “What am I doing? Might as well just quit. This is pointless,” especially during the last couple of years. I still don't think I've really got the words for it. Because right at the beginning, I had this little bit of hope that, “Oh, people are seeing what it's like for disabled people now.” And I remember writing a couple of things and sharing stuff and it just felt like, “Okay, this could be a real turning point, you know? [laughs] We could come out of this…brave new world.” And no, it’s worse – much, much worse. It’s just got much worse. They’re literally trying to exterminate us all. It’s terrible. Not great.”

Mary: I described it to a friend as: we’re all drowning. Like our community is all drowning, and we’re trying to pull up the person next to us while we’re drowning. That’s what this feels like. Like all of the disabled and chronically ill community, our mental health is tanking, and we all feel like we’re drowning. But when someone says, “Hey do you have space for me to tell you something?” And you really don’t but you say, “Of course I do.” Because you know what it’s like to need someone to listen to you. And I cannot describe the disabled and chronically ill community better than I just did. 

Nina: Yeah, everybody I know within the community is fucking knackered and done in, and, also, exactly as you say, supporting other people that are knackered and done in. But sometimes, then I’ll be like, ”Oh am I making a fuss though? Like this seems like…what I’m saying, it can’t be true. Because surely people would be listening, and surely there’d be a national…” And then I start questioning myself. But then I’ll like you know spend two minutes just reading about the history of eugenics. And I’m like “no this is real. This is real. This is happening.” But nobody is outraged about it. And I find it so confusing. And even being out the other day, we were at a big sort of museum in London. It was packed and obviously, you know, we were all masked up. And just being around so many people who aren’t all having a good gawk at me as well. And just looking at them and thinking, “You just don’t give a shit.” Like it makes me so sad, like our country…Obviously I’m from Britain. And it’s just the individualist, you know, “I’m okay. You stay in then.”...sort of attitude and just utter disregard for disabled, vulnerable, elderly, people as well is just horrible. 

Mary: And that goes for the United States as well. It’s very individualist. It’s very, “Oh well if you’re scared, if you’re living in fear, then you stay home. No, you’re the reason why I’m living in fear. Maybe you need to stay home so I can live my life. 

Nina: Oh, that would be nice.

Mary: Wouldn’t it be nice? At the time that we are recording this, we are in February of 2022 and Boris (he's the Prime Minister of the UK) and he just struck all COVID restrictions today at the time of this recording. Let’s talk about that. And let’s talk about how COVID has affected you, your family, your mental health, all of that, the past two years. 

Nina: All our restrictions…they’re not restrictions, they’re protections. And all it is is you know…I mean we've basically dropped everything anyway. But, you know, people were still having to isolate if they got a positive test. And now that’s like, that one for me is like, “Oh, wow, you do not have to isolate anymore. Okay.” I'd like to think that most businesses are going to still keep that in place because nobody wants suddenly all their fucking staff off sick anyway.

When this pandemic first hit, I think he mentioned herd immunity, and everybody was pretty outraged. And now we have herd immunity, basically. And I think our government have fucked everybody–like they've broken the rules so much. They've got to the point where the British public don't give a shit. It's just an absolute hot mess. And so I was always classed as vulnerable, but not clinically, extremely vulnerable. I don't know if I've even got words for it all yet. Because I've got like four kids all at school as well.

And we homeschool them like, obviously, lockdown happened the first time around and then we didn't send our kids back. When the kids went back, we kept them home and homeschooled them. But I actually found that really, really difficult. So, we did make the decision in the end. They all went back to school, so we've always kind of had the risk anyway because of that.

So, in a way, that's probably helped in some ways with me, because I've had to just kind of try not to think about it too much, because otherwise I'd constantly be anxious–which I was for quite a while. I've just found it really difficult being around people who haven't had the same kind of COVID protections, I guess, in place, as I did; and but almost made out that I was being over the top.

You know, I remember somebody saying, “Well, you’re going to have to go out eventually.”

It's like, “We're in the middle of a pandemic! I'll just get takeaway. I don't want to go anywhere.” Like this week has been the first week we went to IKEA [laughs], we went to London, then we went to a show as well, and they were all firsts. And like, had my good kind of mask on, which has sort of helped to a degree. But it's still so frustrating because the little thing like wearing a mask, testing and obviously not going out then if you test positive, you know, they're not big things to ask people and they would enable more people to feel safer going out.

You know, I'm lucky that I'm not clinically, extremely vulnerable. But I still don't want to catch it. I still don't know, you know, how much function I would lose. Maybe I wouldn't. Maybe I would, but it’s still something I’ve not wanted to risk. I’ve not wanted to risk my disabled son either. It's been really hard, like… I've loved moments of it.

That sounds weird, but I actually really liked having the kids home. It was really nice. I felt really safe with them home, and really enjoyed the company. It's been all the…when they've gone back that's been really hard and scary and they have literally all had it. And me and Jase still haven’t, and we’re not sure. So I'm expecting it any day now at this point. Like it’s strange, but what about you? Like, how are you kind of feeling because you're kind of similar over there to how we are over here. And like, how are you finding it? Because obviously you're more vulnerable than I am.

Mary: I have not, other than medical appointments, I have not left my apartment for two years. I go out once a month to a medical appointment that I have to go to every month. And I've had some sporadic appointments like here and there. I've not had a mammogram in two years. I've not seen my cardiologist in two years. I’m supposed to get an echocardiogram every year. I have not had one in two years. I need to go to see my podiatrist for various reasons. I have not been able to go, because the last time I went was right at the beginning of the pandemic. I was wearing a mask, and this man was not, because this was when they were saying only those who high risk should wear a mask. And this man was coughing and not covering his mouth. And I had to move away from him.

And although the podiatrist's office is in the hospital, they are not part of the hospital system, so they don't have to require masks. So I need to see my podiatrist. Like, it’s not dire, but it’s pretty urgent that I go. But I don’t want to be in an environment where it is very, very dangerous. I don't want to find out what COVID can do to my body, because pneumonia has left scarring on my lungs. I had pneumonia four or five times in six years. A small cold can make the bronchitis turn into pneumonia all within a week or two for me. So, I simply can't get it. I can’t get it. And my roommate, my best friend that I live with, her job is at the hospital, but not in the hospital itself. 

Right now, they’re requiring that they wear a mask at work, but that could change. And you know it's scary, it’s frustrating, to know that anywhere I go, I'm not safe. And I know that you’re never 100% safe, but it takes a toll on me. I have an upcoming appointment, and I’m so anxious over this appointment, because where I’m going to this appointment, not only do they do primary care, but they also do COVID testing. So being in an environment where they actively are doing COVID testing, and knowing that the only way I can go into that building “safely” is using the back door. I have said recently, I posted about it: “It's either my dignity or my life.”

Nina: Yeah.

Mary: That’s the past two years. It’s been our dignity or our lives. And the fact that we have to compromise ourselves. I think non-disabled people just think we’re just angry, without understanding why we're angry or to what extent we are angry. 

Nina: Well, because I think non-disabled people always look at the medical, right? They always look, “Well, you're angry because you're disabled, because of your medical condition. That's why you're angry,” as opposed to realizing that we are all disabled, but then we're also all extra disabled by society, by attitudes, by all of this shit. And that's the shit that I'm angry about.

There’s no point in me being angry that I can't walk, because there's nothing I can do about that. So I’ve come to terms with that a long time ago. And I've got my wheelchair, which, you know, helps. I'm angry about all the fucking shit that people just choose not to fix. They choose that you, you know, that you have to choose your dignity versus your life. That's what I'm angry about because that's bullshit.

Mary: You know Nina. I don’t have to tell you it always that way, but the pandemic has just compounded that and made that so much worse. And I get really, really annoyed that when they talk about the mental health crisis surrounding COVID and we’re talking about non-disabled people and we’re talking about children, but we’re not talking about the mental health of the disabled and the chronically ill. And our mental health is already impacted by the ableism that we deal with every single day. And then you add two years of a pandemic, which like you said, eugenicists like, “Oh it’s okay, we’ll just sacrifice the vulnerable. It’s fine, just so we can move on and make some more money and live in this capitalist society.” What does that do to a person? Like how can a person continue to move forward when this is the messaging we’re getting constantly.  

Nina: You cannot CBT your way out of that. Like in the sort of mentoring work I do, you know, sort of talk about almost rational depression and rational anxiety because it's actually very rational to feel anxious when it is so clear how you are not valued. A friend of mine, 2020, said to me, “Make sure you've got some printed out photos of you and the kids, because if you catch COVID and you go to hospital, so and you're a wheelchair user, you need to make sure your pockets are full of family pictures to humanize you, so they know that you're a parent.” 

“What? What do you mean?”

And she was like, “Because you will not get priority because you are disabled. So they will just instantly in a medical setting, you are valued less. So you need to make sure they know, you know, that you are also a human and a mum and everything else.” And it's like, “Oh, okay, that's really bad.”

Mary: Why do we always have to validate our existence?

Nina: Well, the only acceptable disabled people are Paralympians. We know that. The rest of us…

Mary: Oh I forgot that, you know, unless we are being inspiring, our existence is not valid.

Nina: Yes, I'm somebody who works so therefore I had a process recently I was able to get some equipment I needed because I worked. And I was treated with so much more dignity than when I've applied for my disability benefits or anything else ever. Friend of mine, Mary, @invalid_art, saying, “You know, when you were applying for PIP,  like the disability benefit over here, they just want to know about you pissing and shitting yourself.” Like that’s literally it. Like…

You know, again, it's that no dignity. You don't get it until you're disabled, and until you're in it, you just don't get it. And I spent many years being a disabled person who had the privilege of going through life of not really having to think about it too much. Well, I did, but I just avoided going to any medical profession–...I just kept my head in the sand about it completely. Because I think sort of medical trauma as a kid as well, for me, when I had no choice and I had to go to these appointments, I had no language to describe what I was feeling at the time. So then in my early twenties, as much as I could, I just ignored everything, which was quite self-sabotaging because I did not want to go and see a doctor again.

And then it was only until sort of, you know the last whatever in my late thirties and stuff addressing all of this just realizing how much of my…my own kind of self-sabotage and not looking after myself was just this huge avoidance. Because I just had so much trauma around doctors and I didn't know what trauma was, you know. I didn't even know that was the thing. I just shoved it down. And again, I think because so many of us, we grow up isolated and grow up as the only disabled person, we don't have language for anything. I was told that, you know, it's polite to answer people's questions. It's very rude if you didn't. And we have no power at all because it's scary, because you know that people are waiting to take the piss out of you at best or be hateful at worst.

And I think, again, it's why finding the disabled community just changed my life more than anything ever has, because suddenly I started finding the language to describe things, realizing, “Oh, actually, that wasn't me, that was ableism.” I don't know. I don't know how I would have got through the pandemic had I still been, you know, the only disabled person I knew.

It's only being able to speak to other people that understood it. You know, when everybody else in the first year was still kind of on holiday and stuff like that. And it's like, “what?” I'm just so, so glad that other people sort of understood that too.

Mary: I want to go back to what you've said about how you were treated because you were working. My motorized wheelchair, I can lift it up and I can be eye level with somebody I'm speaking to. And prior to the pandemic, when I would go to restaurants and order something and I would raise up my seat, people would treat me with so much more respect because I was eye level. I remember I would go one place and it was always, “What? I don’t understand you. I don’t–What did you say?”

And the day I went to the same place, and I raised my seat, and I was eye level with somebody there, I never had to repeat myself. Because they had to listen to me because I was eye to eye with them. 

Nina: Ugh, people. 

Mary: Speaking of people [laughs], what’s a message you have to the non-disabled community. And is there anything else you would like to add on to that?

Nina: Gosh. I always want to say this without seeming like I’m being threatening. Cause I’m not a threatening person. But, you know, non-disabled people generally are non-disabled yet. Right? Like anybody can become disabled at any minute, you know, whether it's temporarily or permanent or whatever else. Anybody can become disabled. And when we kind of look at privilege and everything else, like when we start working for the world, for the people who need it the most, it naturally benefits everybody anyway.

If we had an accessible world that would naturally benefit non-disabled people, and not that that should be anybody's reason for caring. But you know, I think we are separated and people like to think we're all very different where this kind is subhuman over there. But actually we're not. We are everybody and anybody can kind of become us at any second.

So, you know, disabled people's issues are everybody's issues. Just stop being silly people and just, you know, and wear a mask. 

Mary: Please wear a mask. I know that by the time that this episode comes out, you may think you don’t need to wear a mask. We’re gonna need to wear masks for a long, long time. And if I can wear one and I am asthmatic, and when I go to my lung doctor, and he listens to my lungs (while I am wearing two masks) and tells me that my lungs sound good, I'm sure that the average non-disabled person can wear a mask in a grocery store.

Nina, thank you so, so much for joining me today. This was a pleasure. Thank you so much.

Nina: Thank you so much for having me. Honestly, it was, yeah, a real honor.

[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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