Finding your calling and finding community

In this episode of On Our Terms, host Áine Kelly-Costello talks to Joanne Wacha, a black, blind theatre-loving wheelchair user from the UK. They chat navigating personal assistance bureaucracy, finding your calling, dealing with racism and more.

Transcript

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Joanne

Nobody's physically doing this drama stuff. I'm doing it. Me! It's coming from inside.

[Acoustic guitar music, and singing - lyrics: "I've got a little story, to tell you. Just some stories, about me, about you". Music fades to background while Áine speaks]

Áine

Welcome to On Our Terms, a podcast featuring diverse disabled perspectives on independent living and disability activism, produced by ENIL, the European Network on Independent Living. 

I'm your host, Áine Kelly-Costello. Today I talk to Joanne Wacha, a black, blind theatre-loving wheelchair user from the UK. We chat navigating personal assistance bureaucracy, finding your calling, dealing with racism and more. Enjoy.

[Music stops]

I'm talking to Joanne Wacha. Hi, Joanne, it's great to have you here.

Joanne

Hiya!

Áine

Could you start by introducing yourself and maybe also talk about your journey to becoming disabled?

Joanne

I'm Joanne Wacha. I'm 37 years old… Young. And I, well, yeah, I became disabled when I was 13. I got two viruses, including meningitis. This led me to be paralysed waist down. Um, I also lost one of my – I lost sight in one of my eyes, straight away, as soon as I got meningitis. For the last, maybe 10 years after that, you know, I was living life as a wheelchair user. Pretty independent, but you know, struggles, and lack of opportunities but I was heading to go to university, which I did. And I did media communications or cultural studies. I wanted to be doing stuff behind the scenes, in terms of media, whether it be shows or anything that has to do with the media. I just  wanted to be involved, because I didn't feel like doing anything on screen. And simply because of my disability, I just didn't think anybody would take on anybody who has a disability on screen. I also loved drama, and sports. Sport was out of the question as soon as I became disabled, because although yes, disabled people can do sports. You still have to be good to become a paralympian. I was not good. Actually, I was just too weak, I was just too weak. My hands just did not have the strength. I know what it is to be that athlete and what you need, and I just didn't have it anymore. Which is really, really disappointing because I loved sprinting, netball and trampolining.

So I put my sights on drama, because I enjoy drama. But I didn't feel that I could do much. Being disabled, again, there weren't many roles for disabled people. I didn't know much that was out there. And actually, it wasn't even that it was how I would go to any of these places. At that point, it was just me. And my taxi card. My London taxicard, which gives me around, but it's quite expensive, the further you get out. So my mobility was not good. Public transport was alright, but it just didn't get me anywhere.

Anyway, so I decided to do communication, and cultural studies at university. So I could learn about behind the scenes stuff in getting involved with the camerawork, sound, this, that which was great. But then I lost my eyesight completely. Around the same time I was in my first year at uni, and I didn't know what to do. I had no idea what I could do. So, I decided to take a bit of a break. Six months later, and in hindsight, that's probably a crazy thing to do after losing the site. Later, I went back to university, I decided to do social policy and sociology. Kind of look up grassroots level of what the councils and government do in terms of funding and disabled people.

I live in London, I live on my own with my assistants, so my care assistants, or PAs. That's how I live my life as they assist me in my independent living. Hopefully – I say hopefully because sometimes I don’t feel like I'm living. I feel sometimes, due to financial constraints on the council's part and paying PAs, I just don't have enough support in using my PAs sufficiently for me to live as independently as I could.

Áine

Yeah, that's frustrating. And thanks, thanks for sharing so much of your journey as well. Because I really can identify with that whole, you know, becoming disabled, and then your body kind of changing over time and having to figure out what can work and what won't work and how, what support you may or may not have access to kind of plays into that. Do you want to talk a little bit about that sort of, you know, advocacy that you had to be able to do to live independently and to kind of have the support that you should be entitled to, to be able to do that?

Joanne

Yeah, it did start when I went blind, because I'm a wheelchair user but I wasn't blind. So I didn't get that much, if you'd like, finance, or budget to have somebody assist me with living my life. Unless it wasn't around, but I think he probably was, I just didn't tap into it. So all I had was somebody coming in the morning, to assist with dressing me up and getting dressed. Otherwise, I did everything else. But it was exhausting. So when I wanted to go to university, they said, this is also when I lost my sight. So this would have been the second time around. You need to have a PA. A what? A PA. A living PA. Somebody who's with you, assists you, cooks maybe, takes you to the places you need to go to. I didn't know this existed. I still didn't know what it was. But an organisation called ‘HAD’, ‘Harrow Association for the Disabled’, advocated for me for that. And then, I was told I, you know, okay, you're gonna get this thing called direct payment, and it will pay for carers, that you'd pay for and, you know, assist you with living. And so I'm given this, you know, sum of money. And I haven't got a clue what to do with it. Not one bit. Not anything. Nobody gave me any pointers. Social services just said “here you go”. And that was really odd. And I'd only been able to use them when I was at university. Because that's how late in the game the money came in. So, it was as I was packing my bags into my dorm, it's like, okay, we'll get a carer to come tomorrow and go from there. No instructions, no, anything. I just didn't know how to work it. And because I didn't have any help or support on how to use a PA. You know, it was really, really tough. Really, really tough. I didn't know what to use or how to talk to them. They didn't know how to talk to me. I didn't know what I was supposed to get them to do. How, when, what, I didn’t have a clue at all.

Áine

Yeah, that part of kind of trust and, and relationship building. And then the other thing you're talking about his kind of the financial side just seems like there was just no information at all, in any of those processes. What have you kind of learned over the years in terms of getting that into place for yourself and also, maybe kind of figuring out what it is that you do need and being able to kind of, you know, be clear about that or articulate what that looks like?

Joanne

Talk to people who are using direct payments, or the equivalent and are using PAs, I didn't know anyone until I was in hospital actually and somebody was doing some treatment,  music therapy treatment. Aromatherapy stuff as she told me about a friend she knew who was in a wheelchair and was paralysed, neck down and used what they call PAs and she said I'll get in touch with him. And he told me how he uses them. And you know, I went from there.

I realised I needed more help and finance so we had to get solicitors to help me through legal aid to get the amount that we needed. And going back and forth with social services. That was tough. That was really long and drawn out. Needless to say, at university, I had to take a bit of a back step because it was just too much. It was just a lot going on. But I also then got a good deal again and I had to go to the hospital for an operation. So I never got to finish university. I failed twice now. Do I want to again? Probably not, probably not. Now, I would just like to find my vacation and work and be able to do that. And the only way I can do that is having PAs. But no, I need to use them efficiently and effectively.

Áine

And, ya know, that that speaks to so many of these horrible dynamics where having a particular piece of paper, having this degree counts as this kind of baseline to be able to get into a lot of work, which is so unjust for everyone facing, you know, so many different barriers to being able to study and get that and, you know, as you showing, I'm sure there was, you know, accessibility and all kinds of other things that you would have been contending with, you know, learning to use a screen reader and all the rest of that going blind. On top of trying to just get the actual support at home and at university that you're entitled to. So, yeah, I think a lot of non disabled people don't necessarily realise all of that extra work that goes on.

Joanne

Yeah, because you get what's called the DSA, ‘Disabled Students Allowance’. It's supposed to fund your equipment that you would need as a disabled person. So yes, like the screen reader CCTV, a big TV that makes things enlarged. And I didn't know how to use that. I didn't know how to use JAWS. I knew about JAWS because I have blind friends but I know that takes a lot to do and be trained. And I wasn't even trained in that. And it's clunky, “here you go, use all your equipment. There you go, bye bye. See you later!.” It was just like, when I was given the direct payment money, okay, here you go, see you later, bye. Okay, how do I use this? What do I do? Yeah, I do feel let down. I do feel let down by social services and the universities with the disability side of being, yeah, I do. So I wonder if I should have fought more but I don't know how.

Áine

And it is the energy to have to fight as well. But I think this also speaks to, you know, people become disabled in a lot of different ways. And in your case, you obviously didn't have those connections with a disability community during that process, and so that doesn't help either because of, you know, not knowing when all of that was going on with the direct payment and figuring it out, not knowing kind of who to ask. 

[music - brief acoustic guitar interlude]

In the last few years, I know you've kind of come back to the drama side of things and theatre, and sort of found more of a connection with that again. Do you want to talk a bit about that?

Joanne

Yay! It's kind of like finding your calling. And we all have one, or two, three, but we have it. It's that focus. It's what gives you passion. And that's so important to find for anybody disabled or not disabled. With a disability or without disability. And I – going back to my disability progressively getting worse. I kept on finding things I could do and because my disability got worse. I had to stop doing it. Couldn't find it, stop, stop, stop. It just got crazy. You know, what do you like doing? What job would you do? And you know, yeah, I know what I'm gonna do, but I can't do it because I don't think my disability will allow me to do it. I don't think there is anything out there for me.

So there were some drama workshops going on at a charity I attended for people with a chronic illness. And it was a workshop. And I really enjoyed it. And I was really good at it. And I could do it. I've had, my gosh, nobody's physically talking for me. No, nobody's physically doing this drama stuff. I'm doing it. Me. It's coming from inside. This is really fun. And then by the way, Joanne, the National Theatre does a community play at the end of August. We do it every year with a theatre company called public acts, which brings in eight different communities in London, all very different. We will come together with five fashion actors to do a Shakespearean musical. And we go from there. Okay, cool. Still didn't know how this would work. But I thought, well, yeah, let me get involved in some way. I arrived that first day and I’m told “Joanne, this is your access worker Autumn". I don't know. I call it really bubbly, fun, but I still have no clue. Nada, whatsoever that still meant. But I quickly learned. And she would be – I’d put it like the carer or your PA, for performing arts. So she would be with me as I learnt my lines, she would assist me with learning my lines, she would assist me with the singing and the dancing and the movements that we have to do. And because she had a theatre background, that was really, really helpful. Well, it was strongly advised. But she did, she had it. And what's more, I realised she was also trained in supporting deaf and disabled artists. Now it was incredible. I was like “oh, my goodness, that exists?. That's a thing?. Oh, my gosh, this is brilliant.” And it was because of that axis worker or had been axis workers, I was able to be the best I could be in that play. And I did really, I know I did, I did really well, I worked so hard. And I didn't have to worry about anything else, except be the best I could be during that play. Because the axis worker handled everything else. To getting my lunch for me and assist me with feeding, I start to worry, oh my god, I'm gonna do this, I don't have to pick food that I won't spill all over myself. And it sounds really silly, but it's the kind of things we think about. Like, Oh, I really would like to eat that. But you know what, let me leave it because my hand can't grip enough to eat that I need to eat to be able to perform. Otherwise, I'm going to, I won't be able to. I am visually impaired. So I need a script that is accessible to me. And they did that, they did that they got that all sorted really quickly. And I was able to perform on the stage in 2019 and it was great. And I had such a nice time and I met different people. And I knew okay, this is it. This is what I'm supposed to do. This is it. Now what? But yeah, this is what I'm supposed to do.

Áine

Amazing, that's so powerful around finding your calling, but also the need for, like specialised support, or like how beneficial that is that the access worker had both theatre background and a background in supporting disabled people as well. And to have that combination. And because, you know, I think a lot of the times, you know, disabled people are told to, like dream to be whatever you want to be or whatever. But there are a lot of things that you might want to be but if you can't necessarily see a particular route to actually getting the support, and there are a lot of systemic barriers in the way well [laughs] you know, sometimes maybe, we need, you know, we need those allies and we need those theatre companies like what you worked with that work with Deaf and disabled people to finally be there.

Joanne

Definitely.

Áine

And now you're thinking about making some of your own theatre?

Joanne

I am. So Grey Eye, which is a Deaf and disabled organisation that supports Deaf and disabled actors and artists. That is actually where the access worker they gave me at the National Theatre, that's where she had trained to work with people and she still does, and they have many different access workers there. This particular organisation--word for it--but they support in every which way disabled and deaf artists, whether it be finding an access worker or using the space in their studios to come up with the play of your own or talk to script writers there to get some assistance with your script writing. Just everything you'd want, kind of like drama school, but we're not young anymore. We are older. We have jobs, but we have a space to be our creative selves. And they have support I mean, even to the point that they have a toilet which has a hoist in there. And I don't know, when I lost all that, you know? I don't have to worry about if I need to go to the toilet or if I need to be changed for whatever reason. They've got the equipment there, ready to use. Yeah, so I want to be Deva, I've been doing quite a few acting courses, different kinds of acting courses, improvisation acting courses, Shakespearean courses. The last one we just did was data for social change course. And, you know, Grey has paid that, and I've attended them. And through that, I would like to start developing some kind of play for myself, whether it's five minutes, 15 minutes, just getting notes down, and I'm glad to just get some notes down on paper and start so and I'm doing that way, using my phone and recording myself. And I'm hoping not just to have a place sorted for myself, but to do other stuff, to act in other plays. And I'm getting a lot of support with Grey, in looking for that.

Áine

Amazing, because that's so powerful for, you know, disabled people, not only to be part of plays, but also to have those opportunities to be upskilled. And, you know, a supportive, accessible environment, and then also to be actually the creators of the work as well. Yeah

Joanne

It’s so important because we want to see our stories done by people, like us. 

Áine

Totally, totally.

Joanne

The people behind the camera, or the people writing, the runners… Yeah.

Áine

Yeah. And I think that ends up being particularly true for people with, you know, multiple disabilities and who are marginalised on multiple fronts as well. 

[Music - short acoustic guitar interlude]

A theme that's come out throughout this interview is that a lot of the time, you know, you'll be presented with maybe some kind of support, but no kind of wider information about how to use it or what to go about doing. And that's been quite alienating. I know, you've been involved with a group, disabled Black Lives Matter. And I wonder what you've kind of learned through being involved with that, about some of the kinds of challenges that a lot of other Black disabled people and families, you know, might face in the UK as well.

Joanne

Yeah, so Disabled Black Lives Matter came from George Floyd murder and the uptake of Black Lives Matter organisation/movement, which has been around for years, actually, for a long, long time, but came to the forefront, during COVID after George Floyd. And I've not met too many disabled Black people in my life. I know they exist, but they just weren't visible, I think is the best way to put it. And Disabled Black Lives Matter is, you know, a group of us that meet up to advocate and be seen. We are all seen together and to discuss what it's like being disabled and Black because yes, I am disabled, I have PAs who are white. Other cultures.

But we contend with different things. You know, we're in spaces. There are spaces for us, but not made by us. Or there are spaces where you know, in the council, okay, let's get a Black disabled person. You're the only Black disabled person there. There are no others.

Áine

The token Black disabled person.

Joanne

The token Black disabled person, let's just tick the box. There you go. And they, we've had discussions, we've had meetings where we were told, yeah, we were there. We look nice in the picture. But we're told to just shut up like you're talking too much. We don't need to know about your issues. You're already at the table. What more do you want? And that's a theme that comes up a lot. And I'm sure that comes up with other marginalised groups, but it comes up a lot for us as Black people. And then you don't want that stereotype of, you know, being like angry, loud, sensitive. "You guys are sensitive, you're always going on about the slave trade" approach, or you don't want that, that note put on you. But if we don't speak up at those tables where there's just one of us, nothing happens. Nothing happens. And so we need that.

It's been great. It's been great meeting other disabled people who are Black, and sharing our shared experiences and others not soon shared. I don't know much about disabled LGBTQI community who are Black, and we have that, we have people represented, that I'm hearing what they go through. Also being in shared being in the Black spaces, or being in spaces with other Black people who are not disabled. That's a thing too, that can be difficult too. Them not knowing how to approach you or what to say or saying really stupid things. And am I that Black disabled person who will shout out and say, hang on a minute, I'm Black, just like you, or I just have a disability. This is still what I go through. Because I think they think maybe other Black people don't know that w,e still go through those other stuff that you mentioned. And then some, because of our disability. Yeah.

Áine

Yeah, it seems like having, you know, a better ability to network with other people with, you know, a lot of – not a monolith, but many shared experiences, has, you know, real value as well. And, you know, particularly kind of being marginalised on multiple axes having multiple disabilities and being Black as well. Do you feel like within the sort of care space, or, you know, in your quest to sort of live on your terms, and in a way that, you know, you have every right to in principle? Has it been more challenging?

Joanne

Finding carers or finding PAs, you know, again, we go back to this budget thing. Okay. Why do you need somebody to specifically do your hair? Or why does it take so long? Why are you claiming that you need four or five hours half the day, if you're lucky for someone to assist you with your hair? Because I do, I have Afro hair. It doesn't work like Caucasian or European hair, it's much, much more different, and it needs somebody who knows what they're doing. I have the right to step outside the house, and have my hair, done. And to look the way I would like to look. This doesn't always mean that I have to have a PA or carer that is Black. But I do need that time. And time means money as well. That's an issue I know people have gone through those of us who are disabled and Black.

The way we maintain our skin, if we have to buy cream from another place, and we have to go to an African shop, which might not be in our area, you know, you need the funding for somebody to be with us to either buy that with us. So whether that's the assistance of actually physically travelling to this place to get that, that's one of the things I know definitely. Maybe not understanding my culture. And saying, mmm, offensive things. You know, like "oh, why do you put that cream on? So much?" Okay. Do I deal with this now? Do you know what you've just said? Are we gonna do this right now as I'm being creamed by you? I was going to start shouting out what it means. But at the same time, the person that I've just had this, ah, odd remark from is the same person who now has to use the cream my body. Yeah, it's tough. Some very, very odd things are said.

Áine

Yeah, that's horrible because I think it's a very good example of how, you know, Black disabled people, but really disabled people who are you know, marginalised on any front, can be put into these really vulnerable situations, essentially, because you are reliant on, you know, someone for your care. And when they are being racist to you, or otherwise demeaning. You can't just, you know, magic up another person on the spot and be like, "yeah, okay, I never want to see you again, go away". You know, you're in a particular bind there. So I think, yeah, like, in terms of kind of independent living advocacy, and it's really important, I think that people understand just how complex those kind of relationships dynamics can be and how important it is to have, you know, a good ability to choose who is actually supporting you, right?

Joanne

Yeah, definitely. Yeah.

Áine

Hey, just to finish off, on perhaps a little bit more of a kind of hopeful note, because obviously, advocacy and ableism and racism and everything can be pretty draining. Not something that sort of makes dealing with the world more hopeful for you, I wonder, is it sort of from the theatre side, or anything else that you really kind of get joy from and that keeps you going?

Joanne

Good question. If it's the theatre side, it's the fact that now, I'm able to be a part of something that I know I can do well, and with the right support, I will be doing well, in the future. So watch out, you will be seeing me and my credits and my name.

Áine

Can’t wait.

Joanne

In your art, if you will. Oh, it's, you know, it's like, from the taxi drivers, taxi drivers putting you into the cap. Just be nice about it. Don't ask me where my carer is, like, “oh, you shouldn't be on your own”, like, I need to get from A to B, can we do that? Can he not question me, you know? Things are improving, things are improving. So for example, the data space and seeing a show, I have definitely seen an improvement in access, or even trying to get better access. You know, a lot of the theatres in London are very Victorian, and, but they are making access for it, for me to be able to just watch, I'm seeing data shows, which have people of all different races and backgrounds more definitely, I can see the change slowly I can put the season and then the people who work there at the theatre, being supportive, helpful in any which way, whether it's to show you to the toilet or show to your seat, or to show you what you need. I don't feel alien. I don't feel alien there. I think my positive is like I now can live. I'm still working on getting the appropriate support at home. But I know I can get it, I will get it. I've got good people behind me and I'll be able to live my life the way I want to even if it means that I just want to go out and get a really, really nice cake. Which is a couple miles away, but I know they do really, really good cake. It just makes you smile. You know what I mean? It's like “oh my god, I can't get the cake because I got to travel there because I've got nobody to go with”. But yes, it's the simple things, but definitely my theatre work and just living. Living to a good age. Good old age. Yeah.

Áine

I love that. And it really speaks powerfully to what ridiculous hurdles so many disabled people have to cross just to get to the point where you know that the hope and optimism comes from literally not having the fear of having to live with a lot less autonomy because of not getting appropriate support. So yeah, thank you so much for making the time and chatting to me today. Joanne, I really appreciate it.

[Áine speaks over acoustic guitar music]

Áine

Thank you so much for listening. Tell your friends to subscribe to On Our Terms wherever they listen to podcasts. 

The featured song is Come Here by disabled performer and activist Dennis Queen.

Podcast cover art and visual design by disabled illustrator Hatiye Garip.

The first season of On Our Terms is hosted and produced by me, Áine Kelly-Costello, for the European Network on Independent Living.