duh-soundscapes-6

*rain and birds*

Meera: Embracing difference is by Angelica Udueni and is part of the Department of Unruly Histories. A project ideated by myself, Meera Shakti Osborne. In this work, Angelica shares her experiences of what it means to be neurodivergent and to come to this understanding of yourself as an adult. What can we learn from disability justice? Who is able to access support, and how does our society engage with the idea of difference? In this work, Angelica generously shared her experiences, which I'm sure will feel familiar to many listeners, especially if you are a queer, Black or brown person. 

*echoing indistinct music*

Angelica: So I just decided to create a podcast on a whim, cause I always really liked podcasts and I wanted it to be about neurodiversity. Specifically looking at people who had been diagnosed in adulthood with a focus on people of colour, queer people. Some interesting people got in touch and I had some incredible conversations, like I learned so much. I named the podcast Embracing Difference because that's exactly what I wanted to do. This is a really unique experience that we've had. Oh my gosh. Yeah. That's why, that's exactly what I wanted to do. I wanted to embrace it and um embracing doesn't necessarily mean you are always happy with it or life is great and you don't have difficult days. I guess it's, it's like acceptance, but something a bit warmer than just tolerating it.

 I think it's accepting that this is, this is part of life. This is part of the spectrum of human experience. This is how I am, and instead of trying to change ourselves, we can come together and find points of connection and support each other. 

*echoing music (fight for love)*

I started making the podcast in 2020 during lockdown, and it really came to me in a time where I felt like I had nothing. I wasn't working, I wasn't living independently. I had no income. I dropped out of my degree and I had fairly recently been diagnosed with ADHD and was coming to terms with… accepting the discovery that I am a neurodivergent person and I was feeling really isolated and I wanted a way to reach out to other people who are having similar experiences and come together, exchange ideas, and also share our experiences with family and friends and anyone else who might be interested.

*birds*

Angelica: Honestly, I ended up getting really overwhelmed with the scale of the project after I had conducted all of the interviews. I didn't really know how to interview people effectively either. So when I listened back to the audio, I noticed that I was interrupting, which is a trait of people with ADHD. I was speaking over people at some points and… the conversation wasn't really that structured. It was very non-linear and there are loads of tangent and non-sequiturs, and I recorded hours and hours and hours of audio, which was really really difficult and I found almost impossible to edit, and I was so overwhelmed by the scale of the task that I just kind of walked away from it.

*echoing music (fight for love)*

Angelica: Hi, my name is Angelica. I am the founder of Embracing Difference, which is a podcast that connects neurodivergent people of colour, specifically those who discovered that they were neurodivergent in adulthood. I was diagnosed with ADHD at 22 and discovered that I was neurodivergent as an adult as well. And since then I found a lot of other people, specifically people of colour, more specifically queer people of colour, queer Black women, and gender queer people.

I've gained a lot from sharing our experiences, similarities and our differences. Differences. My aim is to share our stories and find more points of connection between us. 

*echoing music (fight for love)*

Angelica: One, I would say, feature - gift trait of, for example, people who have ADHD, not all, but this is my personal experience with ADHD, is that often we can think and express ourselves in quite holistic ways. So making connections to different topics, building bridges between different types of ideas, thinking quite openly and freely. On the flip side of that is that sometimes I feel like I find it hard to structure that thinking or know when to stop, like create boundaries. Know when to stop, for example, when I would write essays at Uni. I just wouldn't know when enough would be enough. I wouldn't know how to structure my arguments because I felt like everything connects to everything. How do I know where to stop talking about one thing and start talking about another? And it's something I find very, very difficult. But I guess it is also something that I also appreciate about myself. It means I can talk to lots of different people about lots of different things. Find a way to make a connection somehow. So there's a flip side to everything. And why can't we question? Why is it that we need to create a clear structure, a clear argument in this way? Who says that that's the only way we should express ourselves and write and communicate?

*echoing music (fight for love)*

Angelica: Some people think ADHD means you're hyper, and that really isn't the full story. Just like autism, ADHD is a spectrum… experience. It's a spectrum neurotype, so two people could have ADHD diagnoses and present and act very differently, but ADHD is defined at the point of impairment. So at the point where it is having an adverse effect on your ability to function in life. And we can talk about what is functioning as well. That's another conversation. That's another reason why I really enjoy the neurodiversity perspective, because it invites us to really question what we take to be ‘normal’, what we take to be typical and what we take to be the standard. And not necessarily focus on the individual who is being, who's experiencing impairment, and look at the society that isn't supportive of differences, different needs, and different abilities.

* birds*

* Fight For Love - Sault *

Angelica: Yeah, I was really struggling and I didn't understand why, and once again, it was getting me really, really down. I sought out therapy, initially from my university and then from the NHS. I think I was given 12 free sessions, 12 weeks of CBT therapy, and I was diagnosed with anxiety and depression. And I just remember feeling like I wasn't getting anywhere with therapy. I just didn't, nothing seemed to land. And it was like the therapist also didn't really understand what was going on either.

*echoes of Fight For Love - Sault *

Angelica: It wasn't until I ended up taking a… they were called study drugs. It's drugs that tend to be prescribed for people with ADHD, stimulant medication, like Ritalin or um what's another name for it? In America, it's called Adderall, although Adderall is a bit different. I remember taking it and… feeling quite calm on it. Calm and, and just like my mind wasn't racing enough, even though I'd heard that it was supposed to make you super focused, super on it, super organised. I'd read and heard these stories about people organising their entire iTunes collection, spice cabinet…library, book collection, and it, I didn't, it didn't really have that effect on me. So I started doing research into what the drug was actually supposed to be diagnosed for, and that's when I found out about ADHD and I started reading about the symptoms and signs of ADHD, and I was reading these things that I thought were maybe character flaws beforehand. Things like um struggling with keeping your attention forgetfulness, losing things, difficulty with regulating time, difficulty with regulating your emotions, um difficulty sometimes processing information and then writing as well.

All of these things. I was finding it increasingly more difficult as my workload increased as I was getting older. And then after this, it was like I just started consuming so much ADHD related content and learning about not just ADHD, other I guess I don't, neurodivergent conditions like autism, dyslexia, dyspraxia because from what I understand, they tend to overlap and they tend to co-occur. 

* birds*

Angelica: So after that, I ended up going for a referral at my university and asking to get a test to prove, like once and for all, that I actually did have ADHD because if I did get a diagnosis. It would mean that I'd be entitled to more support from my university and from the government. There's funding that is available for people who have learning differences, disabilities, who are neurodivergent, and that kind of support includes extra time in exams, extra time to hand in assignments, assistive technology like text to speech software, um a special laptop, your own private room to study and do your exams. Things like that, that can really help to level the playing field when it comes to… to academic performance.

*echoes of Fight For Love - Sault*

Angelica: The process was actually not that easy because when I asked for a referral, I was told by um the woman who worked in the student disabilities office. She just… took one look at me and just assumed that I wouldn't have ADHD. She was saying “Oh no, you don't present as having ADHD. You’re too still, like I usually, I see boys with ADHD all the time and they can’t sit still. They’ll be fidgeting.” Um, even though I had read that not all types of ADHD are necessarily hyperactive, like, or the hyperactivity could be internal. And this, this is kind of like a perception that tends to affect women more than men, for all sorts of reasons. So it was like I was facing a lot of barriers and I was doing research online as well and finding similar stories, like people saying that, oh I wasn’t believed as a woman, I went to the GP and my GP said that, oh, I only children have ADHD, for example, things like this.

It took a while, but I eventually did get an educational assessment and diagnosis, and then I was entitled to more support at school, at Uni, which was good. Um, although I didn't have a clinical diagnosis, which meant that my diagnosis would only apply at university, not outside of university.

Meera: That’s so weird

Angelica: So yeah, to get, for example, treatment on the NHS, if you choose to have, to get medication, you won't be prescribed medication on the NHS if you don't have an NHS diagnosis. 

*Musical interruption*

Angelica: How I got interested in this topic, in topic of neurodiversity, race, gender, queerness, all the intersections... It wasn't until I got to really university when keeping up with everything started to get really, really hard. Just handing in things on time, turning up to lectures on time was difficult. I would lose things a lot. I just felt generally very overwhelmed… by life and I didn't understand why. I just thought something was wrong with me really. And um, I ended up feeling quite depressed and anxious, just generally being in a very low place in life. My first year of Uni especially, I actually failed that year… and I thought it was because I was doing a subject that I didn't like.I was doing history, so I decided to change to politics, which was something I was more interested in, and I thought I'd do better in. And it was better at first, but I still started to struggle in my first term, even though I did everything I was, I had a calendar, I was scheduling things. I would go see… the student support services there. I was really, like I had a, I was using all of these study techniques and everything. I thought I just needed to be more disciplined and organised and I could still see myself having the same issues I had in first year.  

*Musical interruption*

Angelica: Being introduced to the concept of neurodiversity completely changed my whole perspective on life really, my upbringing, my schooling, education, how…just the journey I had been on recognizing that people have different, I guess, brains, cognitive abilities, and that means we require different types of support and attention. And I just wasn’t just me, a lot of people like me. I'm a Black woman,  just didn't get that type of support. And the fact that I was diagnosed with [ADHD] as an adult was really interesting because you don't just become neurodivergent in, in adulthood. So if you were diagnosed as an adult, it means you had it all time and it just was, it was missed. And I kept seeing more and more people getting diagnosed or suspecting that they had ADHD, autism, dyslexia, dyspraxia, suspecting that they're neurodivergent in adulthood and by that time there isn’t funding from the government to get support. And you've had years and years, decades of struggling, suffering in silence, thinking there’s something wrong with you, internalising shame most likely, that was my personal experience and a lot of people I’ve spoken to said the same thing. I was noticing that it was a lot of people of colour, queer people, women basically racial and ethnic gender minorities who were discovering that they were neurodivergent later in life. I was getting the sense that we just weren’t being given the support, the attention that we needed.

*Very brief dreamy music*

Angelica: Even though the archetype of what someone who is autistic or neurodivergent you tend to think, oh, a white, a white boy who is autistic. You don’t really have too many representations or understandings of people who fall out of that, and there's so many different reasons why this is the case, from the perspective of like institutional racism and state violence, and even from the perspective of our families as ethnic minorities, not wanting your child to be labelled in a certain way, because the state has taught that we are less than already and not wanting to claim that as part of us.

*Tiny musical fragment*

* birds*

Angelica: Masking is, how would I describe it? It is a technique or a practice, a social practice by neurodivergent people that's taken on as a way to maybe blend into society or disguise the fact, their differences as a way to be accepted. For example, a lot of people, um, who are neurodivergent tend to have, um,  sensory sensitivities. This can manifest in many different ways, for example, certain  textures might feel uncomfortable in the skin. Or certain lights might be too bright in certain environments. Noises. For example being in crowds might, um, cause sensory overload and neurodivergent people often will have ways of regulating themselves like calming their nervous systems down, and this is called stimming. Stimming can take lots of different forms. Some people like to rock themselves. Some people might have a blanket that they have that they like to stroke, they might tap their feet. There’s so many, this is why I say these are spectrum conditions, so there is really no one size fits all. People have different relationships to stimming and I find that often people don't know how quite uncomfortable when they witness it. I definitely remember being told to stop. What is that I used to do? Like rocking myself, rocking my feet because it looks weird. It looks strange. People will think that, you know, that you’re unstable or mentally ill. So there's an element of shame that’s brought in, that’s brought into, and actually that actually could be used to, and actually its your body’s natural way of soothing yourself. And you actually see similar types of behaviour taking place in nature. There's an animal that shakes itself. There are a few animals that tend to shake themselves after experiencing high levels of stress.. So it makes sense from like a biological perspective, but I guess we're so not used to seeing things that are different, or often the, the reaction to someone that is doing something that we don't understand is to shame it or hide it. And um, a lot of the time neurodivergent people are just told, oh, what you’re doing is wrong because that's just not what people do.

Meera: It makes people uncomfortable. 

Angelica: Exactly. Makes people uncomfortable, they don’t like to see it. So it leads to neurodivergent people putting on a mask…so learning certain social cues, social codes to blend in and to be accepted essentially.

*Tiny dreamy echo musical interception*

* birds*

Angelica: Noting one of these experiences personally had my own journey like getting diagnosed, discovering I was neurodivergent later in life. Observing other people having similar experiences, also connecting to other, mostly like Black women and queer women of colour, gender queer people, mostly online but also in real life who were going through the same or similar thing. Initially over Facebook and then over WhatsApp, which led me and two other friends to co-found an organisation called ADHD Babes, which is a support group for Black women and non-binary people with ADHD.

That was really born out of a feeling that we really needed to create a space. To share resources, offer peer support, connect, because it can be really, really hard. Like a lot of neurodivergent people tend to be underemployed or unemployed or disproportionately represented in the prison population. Disabled people, are disproportionately represented the prison system anyway, and that includes invisible and learning disabilities, not just physical impairments. The thing is there's so many, there's just so many stats, um, and examples of why this is like an intersectional disability justice issue and there just isn't much support out there. So we had to create that support space for ourselves. I personally had realised that I’d spent a lot of time like masking the fact that I needed help, because I guess I felt ashamed to ask for help. So many times growing up like in my education, I remember people asking, oh, is everything okay? Do you need help? Like, why are you handing things in late? And I just say, no, it's fine. I just felt too ashamed to admit that I needed help. I never really connected to what I really wanted to do. I felt like I was going through like this, a script of how I was supposed to do. Like you go to Uni and then you get a job. I never really sat and thought about what do I really want to do. I was always interested in being creative, but I never thought that that was something.. .that someone like me could do. I just, it just didn't, the thought never really crossed my mind. And it wasn't really something that was, that felt accessible to me.

Finding out that I was neurodivergent forced me to really sit and reconsider my whole life trajectory really. It's interesting because I'll look back with the mindset I have now and notice things differently or… view things differently than I did at the time that they were happening. When I was in school, the only thing I knew about neurodiversity and learning differences, invisible disabilities, was that it was something to be ashamed of, if you had ‘special needs’. It wasn’t really anything that I wanted to be part of me or I really knew about properly. I just saw it as something that made you less than, something that made you less intelligent maybe. It wouldn't be uncommon to hear people using having a learning disability or being what I now know as neurodivergent, using that as an insult. Yeah. You’d be told, oh, you have special needs, the kids that have special needs have to go off into a different class. They’re less intelligent, they’re less capable, all of those things, it's very common for people in the disability justice space to say that having disability justice and thinking about accessibility literally benefits everyone. Assistive technologies, like for example, Siri, text to speech software, being able to send voice notes, different sizes of text when you read. These are things that everyone benefits from, but they've come from people who have disabilities like kind of campaigning and demanding for those adjustments that benefit us all. Like when you take into account that different people have different needs, it means that we all have a better experience, not just in education, just in society as a whole for sure.

*Tiny dreamy echo musical interception*

Angelica: Going back to the podcast, like I said, I did a call out and I started to interviewing people and organise all those interviews on Zoom, and I had the most incredible conversations with so many different people. And it was sooo interesting to hear the different journeys and experiences that people had to share. There were a lot of threads of similarity, for example, feelings of, um, maybe shame, like feeling that something was wrong with them, and then having this total transformation in perspective, like maybe even a feeling of relief or like oh finally, like I understand now there isn’t anything wrong with me necessarily. A lot of people had difficult experiences in the education system and also in work as well. Beyond that, a lot of people had taken lots of different parts. Some people, for example, had decided to pursue a creative path and that was really helpful for them. Um, a lot of people had lots of different interests, like doing a lot of different things.

Another thing that came up was how people acknowledged traits, neurodivergent traits in their parents as well that maybe weren’t acknowledged. So these things tend to be like highly genetic and run in the family. So if you are neurodivergent, it’s quite likely that one or both of your parents also are, and some other people in your family are too.

*prolonged birds*

Angelica: The conversations were really great. They were so vast and… expansive. We spoke about experiences in the education system, different journeys to diagnosis. The conversations were incredible and I learnt so much from that entire process. I actually never released any of the audio that I recorded and now it's all gone because my laptop is destroyed and all the files, all the recordings weren’t backed up unfortunately. So, I don't have access to them. I mean, some of them are backed up but not all of them. A lot of the material’s lost. I wouldn’t necessarily say the project was a failure because as a result of that experience, I fell in love with audio and since then I've gone on to train in audio production and I’ve had a job working at a radio station. I’ve taught myself how to dj.

I’ve made a complete pivot into a more creative way of living. And that just wasn't the trajectory I was on before. So this process of connecting with other neurodivergent people, through a medium that was very accessible to me at the time, I chose audio because I didn't really need too much to get started even though this project was technically a failure in that I never released it and I was feeling lot of shame around not completing things which is something that I’d come up against a lot as someone with an ADHD diagnosis. One of the traits of ADHD is the inability to complete tasks. But I think nothing in life is ever truly complete until… you die. That might sound really deep but I really believe that we're constantly learning, growing, evolving, building on what came before. Things are very cyclical. So even though I haven't released that podcast, my friend Meera has reached out to me to work on this audio piece based on the research that I did when I was making Embracing Difference. So everything's come full circle in the end. And I'm actually graduating two years later after dropping out! And I would really like to thank Meera, for first of all reaching out to work with me and supporting me along the way. I really gained a lot from this process and it's given me a new perspective on the project Embracing Difference. I saw it as a failure, but it still informs so much of where I am today and I’m grateful for that time. I know I need to conclude this piece in some way, but. I find it really difficult to, because… I feel like singing the song Unwritten by Natasha Beddingfield. I'm not going to, but that essentially what she's talking about like the rest of your life is still unwritten. The story is not over..

• Unwritten by Natasha Beddingfield*
  
  I am unwritten
  Can't read my mind
  I'm undefined
  I'm just beginning
  The pen's in my hand
  Ending unplanned
  Staring at the blank page before you
  Open up the dirty window
  Let the sun illuminate the words that you could not find
  Reaching for something in the distance
  So close you can almost taste it
  Release your inhibitions
  Feel the rain on your skin
  No one else can feel it for you
  Only you can let it in
  No one else, no one else
  Can speak the words on your lips
  Drench yourself in words unspoken
  Live your life with arms wide open
  Today is where your book begins
  The rest is still unwritten
  Oh, oh, oh

Meera:  My name is Meera Shakti Osborne. I am the editor and curator of this work. I'm responsible for the shape this piece has taken, part of the process of creating this work has been exploring ways to tell stories, make an archive that feels generative and inclusive.

Everything you've heard is what the participant and myself have chosen to share with you. We welcome feedback and encourage you to visit www.duh.world to see the rest of the archive and to get in touch with us. This work has been funded by Arts Council England Project Grant. Thanks for listening.

Music  included:

unwritten - Natasha Beddingfield 

Fight For Love - Sault 

Transcription by Sarah Maher

Audio Mixing and Mastering by Alex Sushon