‘She said things without the sense of embarrassment’ - Alice Wong's disability legacy

19th November 2025

bbc.co.uk/accessall

Access All – Ep 187

Presented by Emma Tracey

EMMA- Hello, later in this episode I speak to Grace Ogun about her award winning podcast:

GIGI- So, it was cathartic for me to share what I’ve been going through. And I think when you are dealing with something, whether it’s life threatening or chronic illness you want to be able to share what’s going on because sometimes it just feels lonely and you’re dealing with it by yourself. So, I feel as if you can do it physically and, yeah, mentally then do it.

EMMA- But first Alex is with me, BBC journalist. He’s going to be here throughout the episode. And Alex, let’s start by getting a little insight into your current life. You’ve been getting a bit, uh, active recently.

ALEX- I have, yes [laughs]. I’ve joined a gym.

EMMA- Okay. Why?

ALEX- I felt I had to at my age now I’m getting a bit older, 35. But I just felt that I had to get a bit fitter and a bit healthier, and I wanted to look good for next year in the sun.

EMMA- What’s next year?

ALEX- Well, you know, I just want to go on holiday and look good, like on a beach. That’s my plan, so I thought…

EMMA- Beach body ready, right okay. So, let’s just get to know a bit more about this gym visit. You’ve got cerebral palsy, right, you're a wheelchair user.

ALEX- Yes, I have.

EMMA- So, was it a special gym with a special trainer or what?

ALEX- It was actually. It’s a local gym. But what happened is I actually went over there and I told them about my needs and how much I could do, and I asked them if I could have anyone who could help me and explain how I might actually best move myself and what I can do and how it would help me. And they had a man there who is an expert in these areas and he had explained that he knew what moves easiest is my arms, and so it’s mainly arm work which I’ve been doing.

EMMA- I have another friend with cerebral palsy and he has gotten incredibly excited recently about new orthotics, bits that go into his shoes that help him when he walks. The excitement, he says it’s the best walking he’s done since he was about ten.

ALEX- Oh, that’s good.

EMMA- Honestly, it’s brought him so much joy these new orthotics.

ALEX- That’s good, I’m pleased for him. At least he’s happy in himself with it because that’s half the battle, right.

EMMA- Oh, it is. I have a favourite cane.

ALEX- Oh, have you?

EMMA- Oh, definitely. So, my cane is just a stick with a rubber ergonomic handle at the top, and at the bottom it’s clipped in a ball that rolls. When I swish the cane from side to side the ball rolls.

ALEX- I see.

EMMA- And because it’s not a pointy tip it doesn’t get stuck in things. Because I walk through woods to get to the school run and shops and stuff, and the roller ball is really good. But I did use one of my canes for a ten-mile hike a couple of years ago.

ALEX- Oh my goodness, so how was that?

EMMA- Well, one of my balls is broken. For some reason I have five canes hanging in my porch: one has a broken ball; two have skinny tips that I would never use; one is too long and doesn’t fold; and the other one I use all the time. Why have I got five canes when I only use one of them? Why?

ALEX- I guess in case you need them all. In case, you know.

EMMA- I mean, the minute I throw out all the canes I don’t use I’ll leave one on a bus or in a pub or something and then I won’t have one the next day.

ALEX- Exactly, that’s why.

EMMA- Yeah, my children will have to take themselves to school. So, one of the biggest things about having the skinny tips on the cane and going through rough terrain is that there is a very specific injury that blind people get when the cane gets stuck and you don’t realise in time and you keep walking.

ALEX- Ouch.

EMMA- Yeah, it’s a bruise to the pubic bone.

ALEX- My goodness, that’s painful.

EMMA- It is really painful.

ALEX- Ouch.

EMMA- It is really painful and then, you know, you shout in the street and that’s not really good either, you know.

ALEX- You can pad it I guess? What do you do? You just have to hope it doesn’t happen.

EMMA- [Laughs] pad it!

ALEX- Well, I don’t know, I’m just trying to make…

EMMA- Make a cod piece [laughs].

ALEX- It’s not ideal but I guess it wouldn’t hurt as much.

EMMA- But Alex, that is not a very social model.

ALEX- I know, I’m just trying to…

EMMA- You’re asking me to change myself, not the cane.

ALEX- I know, I’m sorry.

EMMA- So, can I tell you what they’ve done instead of making all blind people pad that area of their body?

ALEX- Yes, please do [laughs].

EMMA- They’ve created a shock absorbing cane.

ALEX- Oh, that’s better. That makes more sense. I agree with that.

EMMA- [Laughs] so when it gets stuck it kind of springs in on itself a little bit so that it moves away from that area.

ALEX- Good.

EMMA- It’s called the no-jab cane.

ALEX- Wow.

EMMA- Were ever in the gym before?

ALEX- I did go as a kid but then I had homework and I had life and parties, and rock and roll, and that kind of took over. And I’m an adult now so I’m a lot more calmer and mature.

EMMA- I think they’re smelly.

ALEX- Yeah, they are.

EMMA- They smell like shoes.

ALEX- The ab men and they’re always like, oh look at me. I’m like, you know what mate, yeah.

EMMA- I’ve been in a gym a few times. One of those times I did the absolute pure blind thing of running on a treadmill and running off the end.

ALEX- [Laughs] I mean, that sounds great.

EMMA- Hah, made you laugh!

ALEX- I mean, that’s ow, but that sounds great [laughs]. I mean, not great, but also it would be quite interesting to see.

EMMA- I would love to know what the people looking at me thought. I was only about 20, because I haven’t been in a gym for about 20 years, let’s face it.

ALEX- So, you’re just as bad as me then.

EMMA- Yeah, yeah, totally. I have started running, but that’s a whole different story that we don’t have time to talk about today.

ALEX- I’m sorry, I won’t ask.

EMMA- I mean, ask me the next time because I need accountability because I’ve only done two runs so far.

ALEX- Okay, I will do, I’ll hold you up to account. We can both run; well, except I can’t run, but I can be there and encourage you.

EMMA- That’s not running.

ALEX- True. I’ll say run, Forrest, run, and see what happens.

EMMA- [Laughs]

MUSIC- Theme music.

EMMA- This is Access All. I’m Emma Tracey and I love to hear from you. You can get in touch, [email protected] is our email address, and you can find us on the socials on X and Instagram @BBCAccessAll. And if you haven’t done so already please do subscribe to us. Hit that big button on BBC Sounds or if you're outside the UK wherever you get your podcasts from. Now, over the next half hour or so we’ll be talking about the late Alice Wong. But first, with me is Alex Taylor, BBC journalist, culture specialist. And you’re usually reporting on the news, Alex, but at the moment you are the news.

ALEX- I am yes, yes, apparently so.

EMMA- So, there was a TikTok trend targeted at you. Tell me your story.

ALEX- I was heading home in August and I was at the Underground. And at that time I had my head down, and I could feel a person actually hovering over me. I looked up at that point and I had a man who was inches away from me, and he was looking at me in the eye motionless. And then he put his tongue out. And I know that might appear like it was hilarious, but at the time it was to actually make me uneasy and not sure what was happening. And at that moment I wasn’t sure if he was going to attack me and mug me. I didn’t know what was going on. And then as he was looking at me he started laughing, and then I realised he was looking over my head. So, I turned around and he was with a mate of his who had his mobile out and was filming me. And then I was like, oh my goodness, well this is about to go on to TikTok and everywhere, I have to stop them. So, I said to them, ‘Hang on, you’ve got to stop this, it’s not right. How dare you? I’m just heading home. I haven’t done anything. Get away from me. I’m not a joke’. And then a few more of them actually came over, there were about eight or nine of these guys at this point, they ran away and I went after them in my chair. I have to laugh at this idea that I was in my wheelchair, 100 miles an hour, hurtling after these people and I was saying, ‘Help me. How dare you!’ So, nobody actually did help which well, that actually kind of annoyed me, but I did understand at that time how if I was being mugged it might be a bit of a danger in their minds, not to get involved. The boys, or rather men, eventually ran up a stairwell and I lost them.

EMMA- So, they got away from you because you’re a wheelchair user, they went up the stairway?

ALEX- Yes, exactly that. I did my best but I couldn’t quite catch them, which maybe is a good thing, who knows.

EMMA- Okay. So, they’re doing this TikTok tongue out trend where someone sticks their tongue out at someone who’s not expecting it and films their reaction, right?

ALEX- Yes.

EMMA- So, what would you say to people who might say that they were just having a bit of a laugh?

ALEX- So, I have had a lot of that response online, people who have argued that that’s not a hate crime and they weren’t actually after you. Everyone’s been having this what makes it about your wheelchair. Now, I just want to explain here that I was in a passageway, there were many other people there, you had one person ahead of me and the other person behind me, encircled. When he was looking at me it was in order to mimic that I might have my tongue out, I might not understand, all this stuff it was linked in with why I was targeted.

EMMA- And you wrote an article all about this experience.

ALEX- I did.

EMMA- And you called it out as a disability hate crime.

ALEX- The law actually helps us in this regard because in the UK it’s not only about what words are actually used or whether it’s defined as a hate crime by other people. As a person who was in the chair who had it happen I can perceive it as such, and in law that counts.

EMMA- Tell me about in that moment how you felt.

ALEX- Angry. Because I’m an adult man and I hadn’t asked for this, I was heading home, I was looking at my mobile phone, I just wanted to get home, and yet I had these adult men who just think I’m an okay target to come at and use for content, for laughs. I wanted to hold them up to account really; that was my aim in going after them. I didn’t want to hurt them. What I wanted to argue was, look, you have to get that off your phone because I didn’t ask for this and I didn’t say that you could film me.

EMMA- And did they film the chase as well?

ALEX- No, because they were scared at that point I think like, whoops, this has backfired, he can actually move.

EMMA- Oh, interesting, so they weren’t expecting you to be so quick in your wheels?

ALEX- Not at all.

EMMA- And someone else might not have been.

ALEX- Exactly.

EMMA- Your article got over a million views taking about this subject and explaining your experience.

ALEX- Yeah, and young people read it too. I think that’s an important point which I find interesting that young people read it, massive numbers of young people.

EMMA- Oh yes, because we can follow what age groups it is that read it and stuff.

ALEX- Yeah.

EMMA- You put a contact form at the bottom for people to get in touch and to tell of their experiences, and lots of people did. A couple of the people who read the article are disabled people and it encouraged them to tell their own personal disability hate crime stories. Matthew said:

MATTHEW- I’m a blogger, writer and filmmaker. I have cerebral palsy and use a power chair and communication aid. I get mocked by young people almost daily when I go out in my chair. Kids mock me in the street, shout abusive language at me. Then when I try and tell them to stop it just encourages them as I can’t talk clearly and they find how I speak funny. It’s extremely frustrating. I’m proud of who I am and what I’ve achieved and I don’t see why I should be the butt of a child’s joke; yet I feel completely powerless to stop it. It’s a ghastly, heart-wrenching feeling. No other 42 year-old man would have put up with it, yet it’s happening more and more.

EMMA- That’s so affecting. And he says it’s increasing for him. And Daniel also wrote in. He said:

DANIEL- I live in Cambridge and use a wheelchair. I get verbally abused about once a week through the actions mentioned in this article and others. It makes going outside feel genuinely scary sometimes.

EMMA- Alex, were you surprised to get those responses?

ALEX- Okay, I guess if I’m honest with you, I know how hard it is and how bad it is because I’m actually having to live with it too. So, I was happy I heard actually off those people because it gave them an option to actually make themselves heard. And that’s why I wanted to write the article, not because it’s about me or ego or anything like that, but because no one else is going to hear us unless we have an opportunity, you know.

EMMA- Yeah.

ALEX- This podcast helps with that.

EMMA- Do you experience it quite regularly, Alex?

ALEX- Well, it’s happening more and more and more. Last year I had an article about Timmy, Southpark, and how in the past maybe after COVID especially I’ve had kids who would shout his name at me and think I can’t talk or I talk like him, and that was the whole point.

EMMA- Explain who Timmy is before you go on.

ALEX- Well, I mean [laughs] there’s many ways to describe him, but he’s a character in Southpark and he’s in a wheelchair. He can only really shout his name, but how he does that and how he intonates it gives him a lot of heart and soul and personality. And so he’s not just a person who has no idea about anything what’s going on, he knows full well what he’s doing. And that’s what gets lost in the context.

EMMA- And these people nowadays are taking him out of context and just shouting Timmy at people as a disability slur.

ALEX- Yes. It’s on TikTok you see, and this is how on TikTok that’s what causes that. And so I’ve had lots of that happen too. It has been a build-up. And at my age I feel this more as well as an adult because I feel like yeah, as a kid I had this when it was big then as well when I was younger, and bullying too. But as an adult I shouldn’t be having this. How dare they?

EMMA- And the way you just glossed over, you said and bullying too, as if that was a given.

ALEX- At school it kind of is though. I guess you just have to accept it. But I shouldn’t accept it as an adult when I know full well what I can do and my worth, and these kids have no idea about what I do and what I’ve done in my life.

EMMA- What part does social media play in this, to be honest?

ALEX- Well, I think we have to look at it as an outlet for how our culture has moved. And I think it’s kind of a negative in that we’ve got this world now where you have adults who have no idea about what’s online, you have kids who have this world where they have no rules at all and they’re not held to account for their actions, and so there’s an idea that you can do anything. And actually it appears that you largely can because nothing gets done about it really. And so that means, in my article I actually talked with experts who look into this and why this is happening, and a lot of it is because of how the systems are built on TikTok and others, it rewards content which is emotive in every way, be that anger, mockery or laughter; it’s about instant reaction. And so in order to go viral this is a good way of doing it. So, that’s often why disability gets used as a bat in a sense.

EMMA- In general you looked into hate crime figures in the UK, what state are they in at the moment?

ALEX- Yes, yes. We’ve had a large rise in hate in recent years, especially with disability. However, in the past year it’s actually fallen by 8%. But within that we have to understand that there’s mitigating aspects to it. So, many argue that a lot of this is because people don’t always report what’s happened to them because they either don’t have the confidence in themselves about doing it, or in the service itself.

EMMA- Also on that point, Alex, the Metropolitan Police, that’s London’s police force, recently announced that they would no longer be investigating non-crime hate incidents.

ALEX- Well, it’s largely instances like this where especially online or if you have an opinion or it’s a joke then it can be much harder to meet that bar. And the idea was that we would have less of what they called the culture war. I understand that, but equally like in this case it could have a harmful effect in that people feel less inclined to report instances like this because it's not enough, in inverted commas.

EMMA- And we’ve actually had emails from various different disability groups about this, including Inclusion London, so we know that people are anxious as well.

ALEX- Yes.

EMMA- What did the British Transport Police and Transport for London say and do about your incident and about what you’ve been investigating?

ALEX- TFL has said that hate reports on its services have risen by almost 40%.

EMMA- In the last year?

ALEX- In recent years. In the last year it’s actually gone down a bit; but in recent years it has actually gone up to that point where we’ve had that rise. So, we know that there is an issue on the network like that, and they were understanding about what’s going on. But as you mentioned, we have actually talked to charities who have explained within their work they’ve found that almost 30% of disabled people report hate incidents against them. But against that only 2% of those result in any convictions; and that’s the lowest of any minority.

EMMA- So, Alex, TFL have a campaign which asks other people travelling on their network, Transport of London’s network, to get involved and to help people out in these situations. Tell me about the campaign and how that would have helped you.

ALEX- Yes, yes. So, actually it’s about how to intervene in those instances. It says that you should act like a person who knows them and that can help to diffuse it. So, if you say like, oh hi, I’m heading home, how are you doing and how was your night out, it can help to cut the hate happening and make the person actually talk to them back. But in my case it would help afterwards if anyone would actually have come up and said are you okay, I saw what happened, it could really help when you actually file your case if you can mention that you got a witness or multiple witnesses, that can really help.

EMMA- And it also validates your experience.

ALEX- Yes.

EMMA- Sometimes you can almost maybe feel gaslit, did it really happen, you know.

ALEX- Yes. 

EMMA- It’s the Act Like a Friend campaign where TFL are asking people to be active bystanders, to ignore the perpetrator and go and talk to the person who is being targeted. After all that hard work, Alex Taylor, you can relax and I’ll be back to you a bit later on.

ALEX- Okay, that’s good.

MUSIC- We’re not just a podcast. Find Access All on social media and read our articles on the BBC News website.

EMMA- Access All was nominated for a British podcasting award recently and a couple of us got to go to a glitzy event at the O2 in London. Now, we didn’t win, unfortunately, but we were absolutely delighted to see a disability and health related podcast win Best New Podcast. Journeys with Grace is a sound, rich, music filled first person account of her life with Crohn’s disease and then kidney cancer, as a semi-professional footballer and musician, it has it all.

[Clip]

GIGI- You all look, I’m parking up now. I need the toilet right now. I’m gone. Thank you. Love you guys.

FEMALE- Love you more, babe. If you need me shout me. Hope you feel better!

[End of clip]

EMMA- Grace’s friends get to call her Gigi, and I’ve been given permission to do the same. And she’s here with me. Hi, Gigi.

GIGI- Hey, what a good intro [laughs].

EMMA- Ah, thank you, thank you. Tell the people who haven’t heard the podcast about your life.

GIGI- I’m Gigi, and Journeys With Grace is a story of discovery just about my world and me trying to figure it out as a young lady in Brixton, South London, born to Nigerian parents. And it kind of follows the journey of me playing semi-pro football but having Crohn’s disease and trying to make it in the industry as a musician, before I get life-changing news. And then the whole podcast sees me trying to go through my journey to try and look at the different things that might have contributed to my later on diagnosis.

EMMA- What was the big news you got? What diagnosis are you living with, Gigi?

GIGI- So, at the moment it’s just me dealing with kidney cancer.

EMMA- Often when you get a diagnosis it’s you move forward from there, but you’ve gone back and looked at all of the medication you’ve taken, even your birth. Why did you want to do that?

GIGI- When I was diagnosed it’s easy to say hey, this is what it is, and when you ask the doctors there was a lot of, it could have been bad genes or you were just unlucky, and da, da, da, da. But what if there were some sorts of factors that made me more of a risk? And actually when I went back and looked at it there were so many factors, had some of those things not happened I probably wouldn’t have got the diagnosis. And I think it’s just a message to people that environmental factors, stress, how we eat, how we sleep, how we manage these things actually do make a difference.

EMMA- So, how do you manage your health and diagnosis and all the fun stuff your body throws up at you while living a full and busy life? what are your strategies?

GIGI- In the beginning it was just come and see the doctor and that’s it. But I think when I started taking it into my own hands it became more manageable. So, at the moment it’s everything from oxygen therapy to acupuncture to rebounding every time I eat food, or going for walks, and taking quite a lot of supplements because I’m not on treatment, I don’t get treatment from them. And that’s not because I didn’t want treatment; that was because kidney cancer doesn’t respond to chemo and radiation.

EMMA- And what does rebounding every time you eat food mean?

GIGI- Rebounding is like very small little trampolines. You can have them in your house.

EMMA- Oh, so it’s doing some exercise after you…specific exercise. And is that to help with digestion?

GIGI- Yes, but also to help with the lymph system, moving things around. And also when you eat food, at least for me as someone living with this, when you’re eating food you might get a sugar spike. So, I’m trying to do everything to try and put that all into my muscles.

EMMA- And of course you had Crohn’s disease for many years, so not many people know as much about their gut as you do.

GIGI- Yeah, I truly know about my gut. I had Crohn’s disease for many years before the other diagnosis.

EMMA- And you’re in remission just now?

GIGI- I reversed that, that’s the only way I can describe that. I learnt about Crohn’s disease. I had to dismiss myself or be dismissed from the hospital, from my clinic, and I just went to learn everything there is to know about Crohn’s disease and just started to apply it. Before you knew it I’m here.

EMMA- But you’ve had a scan to say that they can’t see it?

GIGI- Oh yeah, yeah, I had a scan that said no evidence of disease for my Crohn’s disease. But incidentally that’s where I discovered the tumour in the kidney, so yeah.

EMMA- Give with one hand, take away with the other.

GIGI- I know, right [laughter].

EMMA- Gigi, tell me a bit about the football. You were semi-professional, weren’t you?

GIGI- Yeah, I was. I played football for years. I really love football. Football is something that I’ve grown up watching and playing with most of the boys. And then I went off to play with Fulham. When I had the opportunity, I mention it in the podcast, to go and play in New Jersey, but at the time, maybe I was 17 or 18 and I think the idea of living away from home freaked me out and I never done it. But I regretted it about five years later.

EMMA- How did your football career end then?

GIGI- I mean, I made the decision to go to America and make music. So, I learnt how to produce music and I just decided well, music or football.

EMMA- You had two massive talents and you had to decide between one or the other; that’s such a problem to have, Gigi [laughter]. Tell me a bit about the music then. Tell me where you started in music and where it took you.

GIGI- I come from a family of singers. Singing was just normal and just hearing music on a Sunday in particular was like, oh this is really cool. I loved music. Through primary school I’d sing in competitions and things. But then I think the biggest thing I did was Pop Idol, it put me in a position to reach out to managers and ANRs and stuff. I didn’t win Pop Idol. After arguing with Simon Cowell I came out about just before we got to the last 50, that was it.

EMMA- What did you argue with Simon Cowell about?

GIGI- At the time I was living with Crohn’s disease, and I didn’t really know that, I didn’t know it was Crohn’s disease, we were still investigating. It was during one of those performances my tummy was really hurting and I was running off having to go to the toilet. And the producers told me to just rest when we were supposed to be doing practice. So, when we did come and do the performance obviously my group didn’t know our song, we just didn’t know the song when they put us in groups together, not individually. He basically suggested I wasn’t taking it seriously, but he hadn’t been told by the producers this is what happened the night before. So, he was telling me I wasn’t taking it seriously. I was like, ‘I don’t know who you think you’re talking to because actually I’ve been unwell’. So, we had that little disagreement. But then on the next one when I sang by myself he said, ‘I didn’t like you in the beginning but I like you now’.

EMMA- Ah, so you made up?

GIGI- Yeah, we were quite… And then I saw him years later and he remembered me and we had a little chat and it was good to see him.

EMMA- Now, let’s go back to your incredible sounding podcast. It’s really an experience, an audio experience. Can you describe the style of your podcast?

GIGI- It’s like watching a movie without visuals. The sound design is just amazing and it’s so well done, and we spent so much time working on it. So, yes I would write the scripts and I would execute like, this is how I want it to be, I want sound here, I want my song here; but Mark Fiery, who did the sound design, he’s just great at what he does and the way he mashed it together was incredible. So, for me it is a great listening experience.

[Clip]

GIGI- I was brought up in a Nigerian household so spicy food was standard. When the pound the pepper and the heat it was correct, but as soon as I realised that spicy food was a trigger, amongst other things, I started to pay more attention to it. Plus I had these tablets now to help me out.

[End of clip]

EMMA- Is podcasting would you say a good career for someone living with a chronic illness?

GIGI- In this experience it was cathartic for me to share what I was going through. And I think if you are dealing with something, whether it’s life threatening or chronic illness, you want to be able to share what’s going on because sometimes it just feels lonely and you’re dealing with it by yourself. So, I feel as if you can do it physically and yeah, mentally then do it. I think it’s a good option.

EMMA- What did you hope people would get from the podcast?

GIGI- I wanted it to be something that people could use as a tool to just navigate whatever they’re going through, from any different perspective. Like, there’s a lot of musicians who listen to this and they see how I was going to America, knocking doors and sitting down with some of the biggest artists out there. As for people who are dealing with a chronic illness or a life threatening one you really need to learn everything you need to learn about your health so that you can advocate for yourself. Because sometimes you’re going in to see a doctor and you don’t know, and because you’re scared and you haven’t had the time to think about it you just make a decision. But it’s okay to take some time; it’s okay to get a second, third opinion.

EMMA- Gigi, thank you so much for telling me all about Journeys With Grace. It’s on wherever you get your podcasts, and it’s just won Best New Podcast at the British Podcast Awards. Congratulations again.

GIGI- Thank you.

MUSIC-

EMMA- Internationally renowned author and disability activist, Alice Wong, had died in the US aged 51.

[Clip]

ALICE- If I wrote my own reputation it would be that I am someone who shows up, is thoughtful, accountable, and collaborative, that I am someone who welcomes critique and change, and that I want to learn and grow from my mistakes and do cool things with cool people. That’s a mouthful, but that’s how I would like people to perceive me, whether they are acquainted with me or not.

[End of clip]

EMMA- Alice, who called herself a disabled cyborg because she used a powered wheelchair and breathing apparatus due to a muscle condition, started the Disability Visibility project in 2014. This project gathered the oral histories of hundreds of disabled Americans which are now housed in the library of Congress. Alice Wong also founded the CripTheVote hashtag, which was an online nonpartisan space for disabled people to discuss access to politics and voting. Her great, great love was writing and literature. Her own memoire, The Year of the Tiger, was published in 2022. And she was very keen that disabled authors had an online space to discuss their craft. British born author, Nichola Griffith, started the hashtag #CripLit with Alice Wong, and Nichola is with me to remember Alice’s remarkable life. Hi, Nichola.

NICHOLA- Hi, it’s nice to be here.

EMMA- We’ve heard so much about the amazing work that Alice Wong has done, but you knew her pretty well. What was she like as a person?

NICHOLA- She was full of fun actually. When I first met her we met initially through science fiction. She loved science fiction stories and I write science fiction. And I saw her a lot online. And she was very keen on cats and so we had that in common. And so I met her very much through a sense of play; and it was only later that disability began to really be woven into our conversation. She loved great food, she loved great clothes, she loved cats, she loved good books – that’s how I first met her.

EMMA- And one of her big loves was writing, and you’re a writer too. She got the MacArthur fellowship for her excellency and originality in creative pursuits. What was it about Alice’s writing that you think appealed to them, but appealed to so many disabled and non-disabled people?

NICHOLA- Clarity and bravery and kindness, but also the ability to be kind and brave and clear without being judgemental. She didn’t pull her punches but she was never punching you; she was punching the system. And that’s a remarkable gift to be able to split and tailor one’s message that way.

EMMA- Yeah, she really was able to give a sense of place and a sense of fun to really serious subject. I remember reading an article about when she got her feeding tube fitted. I was talking to someone else earlier who remembered reading an article about intimacy and about knowing your own body. Just you’re right there with her, aren’t you?

NICHOLA- Yeah. I’m not saying she had no sense of shame, because everybody does, but one of the wonderful things about Alice was she was very aware that shame is something everybody learns as we grow up. It’s one of those ways that all human beings are socialised, you get these guardrails of shame, don’t do this in public, don’t talk about that in public, don’t admit to this, don’t do that. But basically she understand how shame worked and how demoralising it was for everybody and how much it prevents sometimes real honesty and conversation. So, in that sense she said things without the sense of embarrassment at all. It was amazing. And that gave her work a real lightness.

EMMA- And she really did love a conversation, didn’t she, and she set up various online spaces. She was a great one for getting people behind a thing and getting stuff done. What experience do you have of that organising and that activism?

NICHOLA- CripLit as a regular chat just really wouldn’t have happened without Alice. I came up with the idea on Twitter, I said we need a hashtag, and I started using it whenever I talked about writers or writing. And she then sent me an email and said, so I’ve been doing this CripTheVote thing and I think this would make a really good regular chat. And I’d been doing regular feminist SF chats, so I thought well yeah, of course. But wow, what a lot of work, what a lot of steady… I’m much more a sprinter than a marathon runner. I have the spark and I go yay, and I run, follow me; and then I wander off and other people can keep going or not. Alice was the one who was just like no, I have a goal, we’re going to make this happen, here’s how we’re going to do it, we’re going to lay it out this way, here’s my experience. And she had systems that I had never tried to build before. She was very experienced that way. It was marvellous.

EMMA- What kinds of things did you talk about in these chats?

NICHOLA- Well, we have quite a few of them archived. We talked about everything from what it’s like to be disabled as a writer, like do you only write about, do you feel the need to represent disabled characters as wonderful people, or are we yet at the stage where disabled people can be evil just because they’re evil, not because they’re disabled.

EMMA- Not because they’re the typical baddie?

NICHOLA- Yeah, not because being disabled is a signifier of evil; it’s just some percentage of all people are kind of vile people. So, some crips are too. So, we talked about editing and all kinds of things.

EMMA- All the geeky writer stuff. The word crip it comes up quite a lot in Alice’s, in the things she did. It’s a word disabled people have reclaimed somewhat for themselves. Tell me, you wrote a piece about Alice recently after her sad death, and you said you’d never met in real life but that didn’t matter. It seems like Alice had a lot of medical equipment, she had a lot of care, it was difficult for her to get into physical spaces sometimes. She very famously went to meet President Obama using a camera robot that arrived there as her. How important was online community to her and how important did she know it was to other disabled people?

NICHOLA- I can’t really speak for her, but I imagine that it was almost everything. I mean, in-person communication and community is wonderful when you can have it, but when you can’t online sociability and community it’s a lifeline. Alice is one of many people I have never met, and they’re not all disabled; there are many people I’m email pen pals with who live in the UK or they live in Germany or… I travel a reasonable amount but not nearly as much as if I were able to travel without a wheelchair.

EMMA- How do you think Alice would like to be remembered, Nichola?

NICHOLA- As fine and funny, fabulously dressed and fierce.

EMMA- What a beautiful tribute to your friend, Alice Wong. Thank you so much, Nichola Griffith, writer of nine novels yourself by the way. Thank you so much, Nichola, for talking to me about Alice Wong’s remarkable life.

NICHOLA- Thank you.

EMMA- Alex, that is it for another episode of Access All. Thank you for being with me and telling me your stories.

ALEX- Any time.

EMMA- And thank you for listening. You can contact us, as always, [email protected], or on the socials, X and Instagram @BBCAccessAll. See you later. Bye.

ALEX- Bye.