Hear for Us Jessica Goff
Hear each of our stories within this book, share our journeys of becoming a part of the disabled community, and how we wish to be represented.
Oliver’s Interview
J – So what disability’s do you have?
O- I have autism spectrum disorder formerly known as Asperger syndrome. I was diagnosed with Asperger’s when I was seven.
J – Do you feel like your disability can affect your daily life?
O- Definitely yeah, every day is affected by the way my brain is wired, but when I say it effects my life, I’m not saying it affects it in a bad way. I do struggle talking to people and I do sometimes run the risk of either being too closed off so people think I’m being rude to them or too excited because I know they’re talking about something that interests me and has led to countless people thinking I’m trying to flirt with them or something it’s not really. It’s just if you’re talking about something I’m interested in, I will talk about it for hours.
J - What’s your earlist memory? If any, of realizing you were not as able?
O - Yeah, there’s one like in particular when I was a lot younger. One of the things with autism is taking things very literally. I think someone said lets put our heads together and I headbutted someone. i was about five or six. I don’t do that so much these days, but like theres definitely like a gap of understanding sometimes. So yeah, thats definitely the earlist memory.
Sophie Interview
J- So what disabilities do you have?
O- So I have PTSD and I have borderline personality disorder
So, I don’t know how familiar you are with, say borderline personality disorder. It’s a kind of cluster of traits which affects the way that you interact with people you know, a lot of it is skill based. So, it’s a lack of skills and understanding in so many areas as a result of the trauma. Quite often people with BPD are quite rigid and struggle with change, we can struggle with having long term friendships or relationships. Splitting between black and white thinking, so someone can go from being someone that I love more than anyone to someone that has hurt me and I can’t even bear to look at them. It’s really like constant flickering between two extremes.
For PTSD, you know when an event is traumatic, the brain can’t always understand or comprehend what’s happening. So, with PTSD it will replay the thing it doesn’t understand with external triggers as an attempt to understand them. Obviously for people suffering with PTSD that’s consistently being dragged back to a really difficult time. If someone would touch me, I would be quite violently sick straight away and it wouldn’t always need to be touch, if I smelt something or felt something it would instantly make me sick as a result of the PTSD attack. It’s not very cool but you know I’m just managing my best way, you know.
Rae’s Interview
J
– So what disabilities do you have?
R- So I am autistic.
J – How long have you been diagnosed for?
R- By the time this project is done, I will have an official like on the record diagnosis that’s actually coming this week, but I had a meeting with a psychologist back in November last year who said that if I didn’t want to pursue the formal written stuff that she would class me as autistic anyway, so not for very long.
J- Ok, what does representation mean to you?
R- Not necessarily following the stereotypes, I guess. It would mean a lot as someone who didn’t know for a really long time. I spent a lot of the time thinking stereotypes are true, even though they manifest in different ways for everyone. I feel like seeing a late diagnosis or even just a diagnosis in a woman and not people comparing us to Luna Lovegood would be a nice one. I feel like a lot of autistic women cling to Luna cause she’s really all we have and it’s just, it’s obviously not intentional.
J
- What are your hobbies or things you like to do?
R - Being an actor, I just like the singing and dancing and performing, I guess has always been like my main hobby, since I was really, really tiny but now that I’m trying to make a career out of it
Beth’s Interview
J
– What disabilities do you have?
B- I’m Dyslexic and Dyspraxic
J – Why did you want to be a part of this project?
B- I think it’s really important to raise awareness and I’m quite passionate about it and I feel like if I don’t speak about it, who will, or if I don’t show how I think or how I feel, who’s going to. That’s always my attitude with everything,
J - What started your disability journey? So how did you come to realize that you might need a diagnosis or get your diagnosis.
B - I was talking to my friends in six forms, and they were saying like, oh, I’m just dyslexic blah blah blah. This means this and I was like, oh, I feel kind of similar. I started Googling it, going on like different websites, doing quizzes, talking to people about it and being like I think this is what I have because of all these things in my life and then I came to uni and I did a diagnostic test to see if I had any markers. They said I did so I got tested and then it was like a massive sort of overwhelming sheet of paper because I was like, I’d never felt like my issues were valid until that point, I just thought, oh, it’s what everyone goes through when it was a bit more than that.
Suba’s Interview
J- What Disabilities do you have?
S- Anxiety and depression, I do sometimes have panic attacks like sudden panic attacks.
J – How long have you been diagnosed or been aware of these conditions?
S- Like 1 ½ years after I came to the UK, yeah
J - What are your hobbies or things you like to do?
S - It might sound like something we all do but i like to breathe. We all do it but we just dont focus on it. So i like to spend time on conscious breathing, but i do nothing and just focus on my breathing
J – Have you found any self-type of reliefs that you do to help your like anxiety or tiredness like anything that calms you down or you would just enjoy and it doesn’t make your head go?
S – yeah, I do. At some point I’ve come to realize that it’s all okay to want to alone, like its ok to be in for a day inside my room. It’s ok if I don’t want to see anyone, its ok if I don’t want to socialize, so I’ve accepted myself but I can’t just sit in my room doing nothing. So, I started doing yoga and then listening to calming sound while I’m doing yoga. It’s refreshing and helps me focus on my university work. So yeah, yoga has been helping a lot.
Toby’s Interview
J = What disabilities do you have?
T = So basically i have a thing called cerebral palsy, which is because i was born 11 weeks early, so a long time beforehand. So I didn’t get enough oxygen to my brain, so the messages from my brain to my legs don’t really go through properly. So my leg muscles are kind of shit. My fine motor skills like sewing and things i can’t really do but that’s the main crops of it.
J = Ok, what is your earliest memory, if any, of realizing you were not able?
T = Oh god, that’s a good one. That is a good question.
It was when I went to Legoland when I was like 10 and they were like you can’t go on the ride, cause you have to walk of incase it breaks down but like why? Its literally just sit on it and I’m just like, oh, that’s a bit shit and then we went and ate doughnuts instead.
J – Ok, What are your Hobbies or things you like to do?
T - I do wheelchair rugby so that’s quite a big thing. Been doing that for about 5 years, its pretty cool, smashing people up in big wheelchairs like, yeah
I’m decent, like I’m in the GB development squad for that.
Amelia’s Interview
J - What disabilities do you have?
A – So I have Dyspraxia, dyslexia and dyscalculia and i also have chronic lung disease which comes with asthma and chronic pain and fatigue.
J - Why did you want to be apart of this project?
A - I’m really passionate about disability and having it being represented and it means a lot for me to have two and lived experiences of disability and yeah, thought it would be really fun to get involved.
J - What does representation mean to you?
A - I think as a whole, like it’s so vital. I mean, I wrote my dissertation around the kind of inclusive practice within the entertainment industry, specifically theatre, but kind of in general and looking at how important it can be to have Representation across all ranges of disability, whether that be visible or invisible. think it’s obviously really important to have a true representation, but in my experience as an actor, there has been tokenistic castings where I’m not disabled enough to go to a disabled casting call. Sorry, let me explain that again. So there’s general casting calls and then there’s disabled casting calls. Now when I’ve gone to general casting calls, I’ve been told that my body’s not fit enough to to work But then when I go to disabled casting calls, they say I’m not disabled enough, so it’s kind of looking at the tokenism within casting and to me, representation is really important and it’s vital for everyone to be represented And I think it’s a huge part of society and it needs to happen.
Saskia’s Interview
J – What disabilities do you have?
S - So I am completely deaf in my left ear, but I have full hearing in my right. It’s believed it as a result of Psycho Cyclomedia virus that I was diagnosed with at birth. I also have complex regional pain syndrome in the entirety of my right leg and part of my right hand side of my back And I also have had a total hip replacement.
J
– Why did you want to be a part of this project?
S - I wanted to be a part of this project because it’s really important to me as a disabled woman. I have basically been disabled since birth one way or another, and there’s not always positive photo shoots or films or shows that highlight the beauty within being disabled. It’s often showing what people think are lack of something or disadvantages of it and I think there is a real beauty in being disabled and being different. It’s important to show that.
J - Have you ever experienced a difficulty with your disability being challenged by someone who didn’t realise your needs?
S - Yes, every day of my life. Yeah, there are a lot of examples I could tell you, but we’d be here for hours because unfortunately It is something that I think every disabled person will be able to relate to, that it is an everyday struggle Being a disabled person in an able bodied world, I mean I have had times where people didn’t realize I couldn’t go up a flight of stairs without help or not opening the doors for me , you know, to help me out or even at university not having the kind of adequate support that I actually need.
My own Interview
J – So what disabilities do I have?
I am dyslexic, dyspraxic and I have a heart condition that is called Pulmonary Atresia with Intact Ventricular Septum and Ebsteins Anamoly. I had a stroke on one of the operations for my heart condition when i was young which caused me to have legs problems as one of my legs grew longer than the other. I also have autism and ADHD.
So what started my journey into being diagnosed?
Uhm, so my disability journey started off when I was obviously in my mum’s tummy. When she went for a scan, they said to her that I was going to be born with a heart condition and I had a very low chance of living once I was born, and she could terminate if she wanted to. If she didn’t then it would be a hard journey. She obviously decided not to, and I was born a month early. As soon as I was born, I was rushed straight to Royal Brompton in London, where I went through my first open heart surgery at three hours old and there was a lot of complications after it. I had to be put on a bed of ice for a certain period of time to let my heart rest. It was a very, very scary time for my mum. I was able to go home at some point and then when I was 1 1/2, I went back for my second operation and then when I was three years old, I went back for my 3rd and final one. That operation is the one that caused me to have a stroke on the left side of my body, which later caused me to have to relearn to walk, run, talk even. It really did affect a lot of my motor skills.
