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The Disability And…Podcast gets right to the heart of some of the most pressing issues in arts, culture and beyond with a series of bold, provocative and insightful interviews with disabled artists, key industry figures and the odd legend. The Disability and…Podcast is currently monthly.
50 Disability and… Disability Pride
INTRO
Paul Wilshaw
Hello and welcome to the Disability and... podcast. I can't actually believe I'm saying this, but this is the Disability and... 50th podcast! Today listeners, it's going to be a bit different. Today we'll be talking about disability pride. But both me and my guest today have different opinions on this. So we'll be asking each other questions about this topic, my experience of being the master of ceremonies at Disability Pride Parade in Chester in July and having a fruitful conversation all about Disability Pride Month.
Why it is, or why it is not needed anymore? So please introduce yourself.
Daniel Foulds
Hello everyone. I'm Daniel Foulds and I am a writer and researcher with Williams Syndrome and do have a learning disability. I've known Paul for about nine years now haven't we?
Paul Wilshaw
Yep. Nine long and very great years.
Daniel Foulds
Yeah, it's great. Great. We met through Mind the Gap, and we have both always had quite interesting opinions that are similar but diverge in different things. And this, as Paul said, this is going to be one of those times which bears fruit some very interesting conversations. So shall we start? And I'll ask you what pride means to you?
Paul Wilshaw
So Pride means to me is to celebrate, to have pride in yourself is something I think a lot of people don't have. And I know the saying there's pride before a fall and I do get that. But I also feel that I'm proud that I'm still here, I'm still alive, and that I'm able to live and work well. Part of my learning disability and disability history, people would be put away in homes and in hospitals. So I'm proud to be part of the learning disabled and disabled community.
I also feel that it's a chance to educate people and there's a lot of hate crime still happening in England and around the world. And Disability Pride Month is in July in most countries. And it's not just an England thing or a UK thing. This happens in other countries as well. But I know that you have a different opinion to me on this topic about pride. So can you tell me your opinion?
Daniel Foulds
My opinion is different because I do not understand sometimes because I've got a very literal brain in terms of why do I want to have pride in this? I'm of the opinion that if there was, say, a magic wish or a magic solution medically from doctors, that they could cure quite a lot of the things that mean that there are going to be barriers for me to have to overcome, I would take that cure, or make that wish quite easily and make sure there are less barriers in the future, whether that is financial, physical, emotional or even mental health wise.
I do not necessarily have any pride that I have a disability and I don't fully understand why I need to feel like I need to have pride in myself. I feel like it's a bit narcissistic in my personal view.
Paul Wilshaw
Can you explain to the listeners what that actually means?
Daniel Foulds
When I mean narcissistic, I mean, I feel like it's too much self-praise and self-love and I'm not a very vain person I’d like to think. That's kind of where that comes from in a lot of ways. But at the same time, I also don't necessarily know my self-worth sometimes as well, but I think that's a journey everyone goes from if you're disabled or not, and that's a probably a different conversation entirely in a lot of ways. But I think it does all somehow link back to having pride in yourself as well.
Paul Wilshaw
Yeah, I get that fact of self-love and all that. I think it's really interesting you use that word self-love because I think there's a lot of times where we don't actually think about ourselves. I think around the mental health side, which you said about and I think that's a really interesting thing of personally and I'm going to divulge this to the listeners here today that I also have mental health. I suffer from depression. But I feel that I'm also able to be proud about that and be able to say, and I feel that's also really about the stuff around Pride, is to say we make up, I think the statistics was 14.1 million people of the UK is disabled.
Daniel Foulds
Yeah it's one in four I believe it is that have a disability and one in five of those have a learning disability.
Paul Wilshaw
I feel that that's really important. That's the thing about pride is it's a coming together but also to educate and it's an opportunity to educate people. I think sometimes we are scared to say about topics around disability. It’s kind of, it's people over there or whatever minority you’re in, if you're part of the LGBTQI plus community, if you're part of...
Daniel Foulds
Do you think there's a fear of cancel culture as a result of if you sometimes speak about the almost the elephant in the room kind of situation, as a result it’s kind of that sort of fear stops people sometimes in asking questions? Or feel like they can’t ask questions?
Paul Wilshaw
I think there is a fear of asking questions, especially to disabled people. I think there's still this, I can't say just because I might offend. A lot of the times if you ask people, then they’ll either be offended but also be able to give you an answer rather than you just staring or not asking anything.
Daniel Foulds
Yeah, I mean my partner, she's visually impaired and she's exactly of that opinion that she would rather someone ask then stand and stare. It annoys her to no end and it also means confrontation can sometimes happen where it isn't necessarily needed.
Paul Wilshaw
Exactly. I’m going to talk about a thing that I was part of recently.
Daniel Foulds
Yes. You're going to talk about your role in the Disability Pride Parade in Chester and how it felt to be a part of the community, of the disabled community, or even a community I suppose.
Paul Wilshaw
So this is an event that's held by Kaleidoscope and Storyhouse theatre. The event has been going for four years. It's run for five days. So different events are happening. So there’s a disco, there's a karaoke day, arts, some films, there is also tables with merchandise on it. There's a kaleidoscope in Storyhouse Disability Pride T-shirt that I've got, which I'm so happy about, I love the shirt. It's colourful, it's bright, it says 2023 on it. And also at the far end of the theatre there are these information desks and they had people like the NHS was there and organisations to explain if you've had bad experiences of doctors or the health profession and they would write down what's happened and actually put in a formal complaint for you, if you've had a bad situation.
Daniel Foulds
Was it an accessible way to do it there Paul?
Paul Wilshaw
Storyhouse was brilliant at making sure that we try to make it as accessible as possible. I think you can't always make everything accessible for everyone. I think this is another major thing of, that people and places trying to be accessible for everyone. You can't be. One person’s access is another person's barrier. You can try your best and you can see what the communities ask for at your events. But it also comes down to you as an organisation and what you can actually afford. Events don't come cheap and are run basically on a shoestring. I would love to see more money put into events like this. I feel passionate about that and I want to see a change in that. I want to see local businesses and local charities support events like this because if you support your local community, then they’re coming to your shops, they’re going to come into your businesses, they’re going support what you are promoting so, if you support them, they’ll support you.
Daniel Foulds
Do you think there's enough support in local governments or central government for disabled people and disabled voices being heard?
Paul Wilshaw
So really interesting question. I think in all honesty it's a broken system. I think there's a lot of things that could be changed to support disabled people. I think local government, local councils I do feel sorry for them because I think you can only do what money the government give you. They've got a lot of different priorities. It’s a choice. A lot of things are about choices and the benefit system is not working for people. It's stopping people from getting work. And the whole point is to get disabled people into work but also understand about the benefits that they are on, you’re going to get society into a better position.
Daniel Foulds
It’s also worth noting that our country is probably the only country with a benefit system as open and with as much money as it has pumped into it for people to be able to survive and live. We’re definitely ahead of quite a lot of countries in terms of access in that regard and also being able to live independently. And I think that does need to be acknowledged sometimes. But at the same time, I do agree with you, it is broken in a lot of regards. Speaking as an artist who is disabled and does have barriers thanks to being on the benefit system myself. But what are your opinions on how things could change for the best in that regard?
Paul Wilshaw
Okay, so I totally agree that we should praise about the benefits system. There's a lot of positives. However, I think what I'm seeing, I go to other countries and I see other countries and how they're working. Every country has its own problems and every country has its own successes. But I know people that are on Universal Credit for instance, and they are literally telling me that they are worried about going into acting jobs because they will lose their benefits and they’ll lose their houses. Now, how wrong is that. We are losing talented performers because of a system that is meant to celebrate people getting into work.
Daniel Foulds
I think the one thing that we are missing is advocacy. As a result of that, of things not necessarily having the funding and things like that, to be able to have those issues brought forward and have the correct support in place to be able to fight for that person in their corner and things like that. Big shout out to organisations like People First who do that sort of things. And we are actually next door to Equality Together, at Mind the Gap in Bradford who help in that regard which is a big shout out to them as well. And I'm not wrong in saying you agree with me that those organisations are quintessential.
Paul Wilshaw
They're so essential and they are actually doing a lot of the job which central government should be doing. And it's a situation which is quite sad to see because these organisations don’t actually get a lot of funding to do the amount of work that they're actually doing and are actually causing more problems for those organisations. And those organisations, unfortunately, are going as well. So families are having to advocate for disabled people.
Daniel Foulds
And they don't necessarily know the processes and that in itself is dangerous.
Paul Wilshaw
Exactly so I think that there’s definitely opportunities of where more people should actually have a voice. I think there are top disabled people. I think I remember correctly in the last four years there’s been a learning disabled mayor in the north and I would love to see more disabled people in government speaking up. But I also think there needs to be the right support and advocacy.
Daniel Foulds
Just enablers in general I think...
Paul Wilshaw
To do their best work.
Daniel Foulds
So Paul let's go back to Chester. Can you tell us a little bit more about your experience at the Chester Pride event.
Paul Wilshaw
On the day of the 2022 one, it was scorching hot. It was unbelievably hot and we actually closed off roads in Chester, which, yeah, we were walking down and people had to stop their cars and were honking their horns. It was a great experience just because we were holding people up, but we were like we are here and we're proud to be here and this is us celebrating it. On the day I had a really...there was this person who told me their story. A family member had recently died and came up to us and was like can I join in this? I want to be part of this. I want to feel part of something. And we're just like, yeah, join in, join in. It's, you know. We didn't segregate anyone. It was like, if you want to join and have a party with us, come and have a party with us it’s great. And 2023, because a lot of things had to change because of the weather. So we had scorching sunny hot day when it was 2022, pouring down with rain in 2023. And so with that one it’s a five day event. So I've done some poetry, but I also writ a statement about the arts industry in general called ‘Enough is enough and it's time for a change.’ The whole event is also that it's not just a one off event. Storyhouse is the organisation theatre that holds it under the umbrella of Kaleidoscope. And there is only two pride parades in the whole of England, and that is the one in Chester and there’s one down in Brighton, which I think needs to change. I think there should be more of these events.
Daniel Foulds
Do you think they should be in every city?
Paul Wilshaw
So it doesn't have to be every city. But I think there are more chances for areas or counties to actually adopt it. It’s just a real celebration of disabled people and non-disabled people together and join a really great time. I personally felt, okay, this is one of my communities.
Communities is a main thing for me because I feel that I sometimes don't belong to a community and sometimes I do. This day I felt part of the community and I was proud to call myself disabled. And I know about you Dan, and I know that you've also got a project about communities.
Daniel Foulds
Yes, my own perspective I suppose is very much what the play that I've written is about.
It's called ‘In Neither Camp’. Now, unlike Paul, I've not necessarily had that sense of community with fellow disabled people, and I've always felt like I have struggled to fit it in different places and try to discover a sense of belonging and a sense of community. So I've kind of shared this in a piece of theatre that I've written, and that's my community is very much the geeky community, and there's an awful lot of people within that community that are autistic or have a learning difficulty as well. Have dyslexia, or dyspraxia or in general do have some difficulties with the mobility either through either disability or through health conditions. And there is a common bond with being interested in various geeky things and things like that, which I won't necessarily list for time's sake, but there is that sense of kinship. The play itself delves into all of this, but also talks about the journey of people in a similar position to myself who don't necessarily feel that they are part of the learning disabled community or non-learning disabled community and it's just a journey. But I also think that's a very important thing for disability as a whole is it's actually a journey of self-acceptance I think sometimes. And also just being able to talk to people can be quite hard, I think sometimes.
Paul Wilshaw
Yeah, definitely.
Daniel Foulds
And it's just a brilliant opportunity during Disability Pride Month to be able to do that, I think.
Paul Wilshaw
Yeah, definitely so. And I think it's really interesting you said around that you feel part the geeky community, but then you also listed that there are quite a few disabled people in that community as well as non-disabled people. So it's a really interesting thing there.
Now we’re going to talk listeners... Dan’s going to ask me some questions about, well, he's just going to ask me some questions.
Daniel Foulds
There's a couple of observations I’ve had because I've seen some of the photos from the Chester Pride events, the Disability Pride events, and we had a very quick conversation about this before we started recording today. It's just a very quick observation, I would be interested to hear listeners thoughts on this, but I imagine there's a little bit of confusion regarding whether or not Disability Pride Month is associated or is a part of the LGBTQ plus community as well, given also month itself is the following month from Pride Month. And I'm wondering, is there actually some confusion there?
Paul Wilshaw
I do think the month is very close to Pride month, so there is some confusion around this topic. A prime example was that I went to Pizza Express in Chester. I was telling the person about the event and she asked me that same question. She said I thought Pride was last month. I was like, yep, this disability pride, it's a totally different thing. And they were intrigued by that, but they felt that they feel slightly like you did. It's all part of the same thing. Now from my understanding, and this is just me, but I fully understand it's a totally different feeling and there's actually a different flag for Disability Pride Month. I don't think a lot of people know that actually. And also that people that are LGBT will be a part of disability pride. And like I said, it was a celebration. I don't think people think about it as, Oh yeah, it's about a specific topic. I think they wanted to celebrate being who they are, and I feel that's really important to recognise is that if you're disabled or you're non-disabled or your LGBTQI plus community, you feel part of a minority. And I think these are the opportunities of we’re saying we don't want be part of a minority. We're in your society. We're still here no matter what. So you've either got to embrace us, not embrace us but understand us, or we're going to go back in cycles of what we've had in the past. And that's going to cause more tension and more anger, and amongst our societies.
Daniel Foulds
And do you think there are signs of that happening there Paul?
Paul Wilshaw
I think there is signs that we are all fighting against each other. I feel there’s major signs that we're all fighting for the same attention sometimes. I think that’s sad in a way. I think if we all thought about it, I think it's a prime example that we all want to be understood, but it's an easy way of dividing people is by putting fault onto a community. And I think that's a really easy way of doing it.
Daniel Foulds
And I think that's another really important aspect to having a Disability Pride month as well is to help break that kind of thoughts, those feelings and that way of thinking from happening by actually having to sell faces, voices and just out in the community and seeing that they are people. And I think that's one of the core things that people tend to forget that disabled people are still people. And yeah, that's just a statement in itself really, and one that needs to be remembered. Is there any moment, Paul, that you can think of where you kind of have that moment of absolute pride? Not necessarily at the pride events, but can you give us another example of where you felt proud of, of being Paul or having a disability?
Paul Wilshaw
Ok, there was a question you asked me before this meeting. It's really interesting that you asked me and I really have been thinking about this recently. You asked me, do I feel proud of being disabled? You asked me that question. Now I’ve been thinking about this and it's taken me a while to actually get to a proper answer about it. But I think from when I was at school till 2008, I hated being disabled. I was bullied, I was struggling with my legs, with my speech. But a thing happened to me in 2008 and this person I owe so much gratitude to. And her name is Francesca Martinez, who is a comedian who has cerebral palsy but she calls herself wobbly. I also have cerebral palsy and it’s the first time I actually saw a disabled person on stage at my local theatre. And she was making fun of having cerebral palsy. Now, for me, being a youngish, I think I was like 21 at the time, 2008. So yeah, about 21. Seeing a comedian make fun of her disability, but also telling her story was like, okay, I can be proud of having a disability. I can accept it. It might not be something I'm going to boast about all the time. I'm now going to say that I'm doing it a lot more, me talking about it has also opened up doors to other work in my life. But I wasn't proud. It actually caused me a lot of distress and for me being open about this. So yeah, I wasn't proud but I now am.
Daniel Foulds
So it's been a journey. I think it all goes back to that whole thing of journey of acceptance, self-acceptance but also goes back to that whole thing of knowing your self-worth I think. Again, I know I keep saying the same phrase, but it's a journey. I think if your disabled or not, you go through that journey in some shape or form. And I think it's just worth thinking to yourself, you are worth time and you can do things. It's just sometimes needing to hear that I think is also sometimes something that's very important. So if there is a listener hear, know your self-worth, you do have value, you can do things and people probably do notice it. Sometimes people just don't say it.
Paul Wilshaw
Yeah, and that's definitely true and I totally agree if there’s anyone listening to this. Do know your self-worth and it doesn't mean you have to have pride in yourself. It doesn't mean that it means know your own value because as much as people might discriminate, know that you're worth it. And you know there’s people and things to support as well and just know that we're listening.
Daniel Foulds
Yeah I mean that's a very a good statement and also on the subject of people are listening, do you think that we are now starting to head into a direction where disabled voices are being heard a bit more?
Paul Wilshaw
I hope so. I think it's a really interesting time of where a lot more people are standing up for their rights, I think. And I think that's in every community. I think that's worker's rights. I think that's disability rights. I think that's about migrants and all that situation. I think it's really interesting that the voices of people are being heard. I don't know how high it's going up the chain of command. So I don't think politicians as such are listening to these groups are saying. I think there’s a lot of time of where we are literally banging our heads against a brick wall. But I think if we talk to each other and we actually do get these groups together, we can fight the power. Rather than it just being one group fighting for a cause, we should all just join together. I think that's the only way we're actually going to see change in society.
Daniel Foulds
And with voices like yourself and hopefully through this podcast, it'll hopefully encourage people to actually use their voice or realise they even have a voice. They can hopefully make change for the better.
Paul Wilshaw
Yeah, and I think a lot of a brilliant podcasts by learning disabled, disabled, neurodiverse podcasts are out there that are speaking up and I think there are really good allies, non-disabled and disabled allies as well. So yeah, if you're an ally, thank you. If you’re a disabled podcaster, also let people know about you. Let's find ways of promoting each of us so that we can get these podcasts listened to. And yeah, like I said, this is our 50th one and this is not just Mind the Gap and Disability Arts online but also Graeae who are a great disabled theatre company down in London who have got a brilliant podcast with Disability Arts online as well. So if you listen to this one, also listen to some of the older podcasts that's on there because there's a lot of fruitful discussions on there.
Daniel Foulds
I think my final well, not necessarily my final question, but it's a a question I had for you for using of language and things like that. What are your thoughts on the various different terms that describe disability, learning disability, neurodiversity?
Paul Wilshaw
Language is an ever-changing beast and I think a lot of the time we are stuck in language.
A lot of the time non-disabled and disabled people get stuck on what words they can and can't use. You’re never going to get it right all the time. No one does.
Daniel Foulds
And that's perfectly fine.
Paul Wilshaw
And that is absolutely fine. But also recognise that if you have got it wrong and someone does tell you how they want to describe itself, use that way of speaking. I know there are some words that are used and I absolutely hate them, but I respect the people that want to use those words.
Daniel Foulds
Sometimes though it is important to call out when people are using the wrong words as well. I can give you an example of working as a researcher in the UK to give context. We use learning disability to describe the community, but in other parts of the world they'll use intellectual disability which I personally find offensive as a researcher and things like that.
But I think it is positive to hear that people are listening to this and wanting to change it worldwide I think.
Paul Wilshaw
I also think there’s a way of understanding what other cultures are saying and why they say that, and I think it's a chance for us to actually explore language. Rather than us saying, oh no, that's not the right way of using it. There are people using words that are negative, but people are now claiming those words back and I feel that's really important to recognise that there's words that some people won't like. There would be some words that people do like. There's no right or wrong answer. You're a person. This whole thing about pride and being proud and all this, we need to start listening more as a community, as a society, and see what happens.
Daniel Foulds
Change the world in little ways, and make it a little bit of a better place for everyone. And I think that's a great place for us to really end that conversation.
Paul Wilshaw
Yep. And just to say that you don't have to be proud to be disabled. I think that everyone is on a journey and I think, however, that events like pride and disability pride is important to show people we are part of society whether people like it or not, and if we interact with each other, we will make this world a better place. So I really want to thank you Dan for being on this podcast today.
Daniel Foulds
Pleasure to be here.
Paul Wilshaw
I want to give a big shout out to Disability Arts Online. This was their 50th podcast. Next month will be Disability Arts Online podcast and thank you for listening. Let's get this podcast to more listeners. Take care. Stay safe and thank you.
Daniel Foulds
Thank you.