Byron Filler on the 10 things you’re missing out on in life if you don’t have high functioning autism

I grew up with some mixed messages throughout my life. I constantly sought to fit into normative social settings but I consistently found myself with roadblocks. Sure, having Autism kept me from having ept social skills, but ironically, the roadblocks were not set up by my brain. I either was bullied and beaten up because others saw I was different, or people would befriend me under the guise of taking advantage of me.

Even if I did have proper social skills at the time, there was not much incentive to be social and I began demonising myself because I couldn’t keep up with being “normal.” But then one day I woke up from all of that, I discovered something about disabilities, about myself, and about having Autism that I firmly believe to this day:

A disability is simply a tool that you’ve not yet learned to use

Now, how you define “tool” becomes so much more dynamic when you’re talking about any disability. It’s about how you use it. In this pursuit, I cultivated my own social norms, training my mind to handle being over stimulated, and learning about how my brain works. I’m going to show you that underestimating anyone with a disability is SO NOT RAVEN…that read so much better in my head…crap…go to point one…I said go to point one!

1. If I had never told you, you would have never known.

And when you feel weird about it when I tell you, I bask in the awkwardness you feel about not knowing more about my disability. It’s friggin’ scrumptious.

2. There is no one else like you.

No. You’re not special. Honestly, do you really want to be visited by a wizard who tells you that you’re the epicentre of a prophecy with world-ending consequences? Mhm. That’s what I thought.

Autism is what is considered a Spectrum Disorder. This means that every individual case is completely different from one another. I imagine that it makes most scientists that study the condition, flail their hands above them in defeat and say something like “dang nabit!”

3. Social skills? Where we’re going, we don’t need social skills.

It’s strikingly apparent to me that people just don’t seem to have the patience to teach one another comprehensive social skills or norms. When I was able to start holding a conversation with people, I didn’t have any kind of idea of social norms or skills.

Eventually I started noticing that people didn’t know what to do when I had an unconventional way of expressing myself. Trying to navigate all of this is exhausting. So if I wasn’t gonna get any help, then screw it! Social norms, rules, whatever! It’s all b*llsh*t!

4. Search your emotions. You know them to be true.

People who have Autism are not robots. We just do really good impressions of them. What I think most people experience is that you see a person with Autism who looks like they’re devoid of all emotion. What you’re really seeing is a lack of expression as the result of exhaustion from being overstimulated all the time. Not only that, but when your brain is persistent about nitpicking between feelings and emotions, and treating these as mutually exclusive assets, being unable to see how they’re related, and then make you do all the work to make the connections between the two, you’d wanna hibernate for the winter too.

Here is what is absolutely brilliant about this. You’ve automatically become the most objective person in the room. The same reason you’re unable to express a smile is the same reason you don’t express contempt. When you don’t have the energy to express emotion, who really has the time to judge people? I have found that people have naturally gravitated towards me because they can trust me, trust that they can say anything and I’ll be real with them.

5. Your friends and family are the fiercest people on the planet.

Having Autism is something where you’re already feeling alienated because you naturally feel disconnected. Getting bullied in school definitely wasn’t any help, but when one of my friends saw me getting into a fight, them coming to my aid was as if I was capable of summoning a Lava Hulknado (yes, that is a lava tornado made up of a menagerie of Bruce Banner’s rightly p*ssed off). If you’re capable of summoning even one Lava Hulknado, you’re awesome.

Most certainly any good friend or family member will fight for you, but when they’ve connected with you because they have seen what you’re capable of as a friend, despite the challenges you face from a socially debilitating condition, forms some unbreakable bonds with people. I wouldn’t be the person who I am today if it wasn’t for the beautiful, loving, and supportive Lava Hulknados in my life.

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6. Your sense of humour is twisted.

Along with the assumption of a “lack of emotion” is this notion that people who have Autism don’t have a sense of humour, and it does makes sense. I did stand-up comedy for a few years, so I can tell you that, yes, people with Autism have a sense of humour, it’s just different. Someone with Autism is typically going to take things a bit more literally, so typical jokes just don’t play off so well.

7. You’re not socially awkward when you don’t know what social awkwardness is.

I…I…um…I know I was meant to write a whole section here but I wrote the headline, and then I’ve been sitting here trying to think of something clever…and…and I…I’ve got noth…look this explains itself doesn’t it? I mean I kinda figured you’d fill in the blank on the bulk of this article after section 3 if you’ve been paying attention but…yeah, okay, sue me, I spent way too much time coming up with “Lava Hulknado” and I thought that was really funny…so this is awkward…wait…I feel awkward?

8. Conscious subconscious brain.

Part of why your brain is working as if it’s in overdrive is because you’re acutely aware of your subconscious and what it is doing. Not only do you see your own actions and language, you see the process of why and how you’re using it. You can’t unsee it, it makes you feel like anything you do or say is predetermined, and that there is no control that you’re allowed to have.

This is exactly the reason why I’m capable of understanding how my brain works. You have everything you need to analyse your own brain, and when you’re capable of learning to understand your patterns, you become acutely aware of other people’s patterns too.

For example, reading body language was something that was once difficult, but in the times that I have been able to analyse my own self expression, it helped me analyse how others might express body language themselves. That was how I was able to teach myself some basic social skills.

9. My Autism senses are tingling.

Life is fun when you live in a constant state of being overstimulated all the time! You constantly have acute awareness of your surroundings on a painful scale. No seriously, I’ve experienced physical pain from being over stimulated. My brain is incapable of filtering information that comes into my head. You ever wonder what’s going through the head of a person who has Autism? It’s EVERYTHING AT THE EXACT SAME TIME!

10. Have you ever tasted the colour blue?

I have! Sort of. Let me explain. Blue, contrary to popular belief, is hot. Not spicy, just hot. And actually this makes a lot of sense. Based on how light works, blue generates more energy than colours like red or yellow. So it’s safe to assume that black tastes cold. Have you ever felt warm in a dark place? …THAT WAS A RHETORICAL QUESTION GOTH KIDS!

But how could I possibly know this? Well, I figured out why my brain can’t filter stimuli and what it’s actually doing. With the colour blue, my brain recognises this colour as sight information, that, most definitely, shall always be a thing. It also doesn’t understand that blue is just sight information and doesn’t know that it should be compartmentalised as such. So my brain also compartmentalises blue as sound, taste, smell, and touch too. I should clarify, this doesn’t mean that I’m actually capable of tasting (or hearing, or smelling, or feeling) blue, my brain is just working too hard to read that information and interprets it indiscriminately.

Now imagine all of that multiplied by every type of stimuli you can think of. Hearing shapes, tasting sound, touching scent, smelling vibrations. Every waking and sleeping moment of my life, my brain relentlessly attempts to interpret way too much, and it will never stop!

One thing is for certain, I don’t have much control over my brain, but what I do with that is within my power.

 

 


Join the conversation on the Ditch the Label Community here.

40% of people we surveyed said they were bullied because of attitudes towards their hobbies and interests…

Anyone who is not so good at sports will understand the feeling of dread when you’re the last person to be picked for the team. Ability in sports is often seen as an important factor in school and can also be a common reason why someone is picked on. The thing is, some people just aren’t sporty!

However, this doesn’t mean that non-sporty people can’t play sports! Most sports have a competitive element but that doesn’t mean they have to be played competitively. There are, in fact, loads of sports you can play non-competitively and just for fun or fitness. It’s important to stay active for your physical and mental health but if football’s not your thing, basketball is a drag and track is tricky, try some of these alternatives:

Skating

Skating is a creative sport and one where you will never stop learning. There aren’t really any rules or structure, its all about just figuring things out for yourself. All you need is some protective headgear and a board or some skates, then hit the skatepark. Added bonus: you look like a badass (until you fall over).

 

Surfing

 

If you live near the coast, chances are there will be some kind of surf shop nearby where you can rent some surf gear, take a lesson and see what you think. Surfing is a sociable sport with a community who don’t tend to take things too seriously unless it’s a specific event so its easy to surf non-competitively. Not to mention that it’s a great way to spend time outdoors and in the sun – its the perfect summer sport! So, grab a board and jump in!

 

Yoga

Loads of people do Yoga. Yoga is good for core strength, balance, posture, muscles and even your mind! Yoga encourages you to focus on your breathing and you’ll probably find after a while that you feel relaxed after a session. You can do yoga at home, in the park, at the gym – even in your bedroom. All you need is a tiny bit of space and a matt. Before you say “but, yoga’s only for girls!?” check out what Anthony Joshua has to say about Yoga here – now, get stretching!

Bouldering

If you’re not bothered by heights and perhaps the occasional fall, bouldering could be your thing. You get to climb at your own pace and chances are, you’ll use pretty much every muscle in your body – so it’s a great workout to boot! The good thing is that bouldering is becoming an increasingly popular sport and it is reasonably inexpensive to take part. Google your nearest bouldering centre and get climbing!

Trampolining

Trampolining is a whole load of fun. You get to bounce around and you can have fun while doing it. You don’t have to be super sporty, you just have to be willing to give it a try and experiment a bit. Lots of sports centres have trampolining facilities and classes that you can attend – what are you waiting for?

WCMX

Who said extreme sports can’t be accessible? WCMX stands for WheelChair Motocross. It’s similar to skating or BMX, but in a wheelchair. If you have wheels, grab a helmet and get down to the skatepark! You can find out more about WCMX here when Ditch the Label met WCMX champion, Katherine Beattie.


Don’t let fear of being bullied or picked on hold you back from doing the things you enjoy. Too often, we hear about people who don’t take part because they’re not good at mainstream sports so they just give up altogether! We say, screw that!

How do you stay active?

Head over to community to share the love:

 

“Skateparks are really inclusive spaces, we’re all on wheels here!”

While we were in Los Angeles at the end of 2017, we had the privilege of meeting the badass WMCX rider, Katherine Beattie. Katherine is proudly the first women to land a backflip in a wheelchair and spends her days at the skatepark popping wheelies and most importantly, having fun in her wheelchair.

Here’s what happened when we met Katherine:


Did you know

8% of people that we surveyed in the Annual Bullying Survey 2017 were bullied because of attitudes towards thier disabilty.

There is a section in the Ditch the Label Community where you can chat about anything and everything to do with bullying or disability. Don’t suffer in silence – check it out here:

“I’m changing misconceptions about deafness…”

Growing up as a deaf child and teenager in a hearing world was not easy. I tried hard to fit in and socialise with my hearing peers but society was, and still is quite judgemental. I was known as “the deaf girl” – the one that peers didn’t want to associate with because I was somewhat different…

I think it was just a lack of deaf awareness and not knowing how to communicate with me. My friends left me out, group classroom situations were never accessible and people didn’t bother repeating themselves if I didn’t hear them the first time. Later on, I realised who my true friends are – the ones who made an effort to include me.

My pet hate is when someone introduces me to someone else as “This is Ellie, she’s deaf.” To me, it’s a label and it makes it sound like that’s all I am. For example, my old boss who was not deaf aware at all, always introduced me (while over-enunciating) with my ‘label’. People’s instant reactions were: shock/horror! ‘How are we going to communicate with this person?!’ And slowly… backed away as if I was an alien!

You wouldn’t introduce someone like:
“This is Marie, she has one leg”
“This is Shaun, he’s gay”
“This is Will, he’s in a wheelchair”

Try instead:
“This is Ellie, she’s 21, loves swimming and blogging”

Deafness is just a part of me, it doesn’t define who I am. I like to choose when I tell someone that I’m deaf. I’ll chat normally and if I don’t understand them or I feel it’s relevant to tell them, I will. Often, they don’t realise or they might work out I have a bit of a deaf accent. But I’ve proven to them that they can communicate with me easily and that I’m just a normal person like them!


Every deaf person is different

Hearing people often think… “She can’t hear me”, “She probably uses sign language”, “She won’t be able to talk” But they’re all not true! Every deaf person is different. They’re not all old-aged, they communicate in different ways and have different levels of hearing loss. Here are some tips to remember, next time you meet a deaf person:

1. Don’t panic!

Deaf people are friendly, not aliens! Keep calm, smile and approach them normally.

2. Get their attention

The deaf person might not realise you’re talking to them. You can gently tap them on the shoulder or arm, or stand in front of them to get their attention.

3. Find out the best way to communicate

Some deaf people use sign language, others speak or lip-read. Everyone’s different. Ask the person how they would like to communicate. If they don’t understand what you’re saying, please repeat yourself, explain it differently, write or type it down. Please don’t give up!

4. Don’t say “never mind”, “it doesn’t matter” or “I’ll tell you later”

It does matter. Deaf people want to understand you and want to be included. Even if it’s a funny joke, and you have to retell it minutes later and it’s not funny anymore – it still makes them feel included.

5. Communication is a two-way process…

Deaf people are willing to make a conversation work if you do, but communication is a two-way process!


More from Ellie:

This New year, we’re hitting back at ‘New Year, New You’. We believe that whoever you are, wherever you’re from, whatever you wear, whatever you do, however you dance and whoever you love, it’s up to you. Don’t let the new year pressures stop you from doing your thing. Start this year on your own terms.

Meet Gem, AKA: Wheelsnoheels. After suffering a spinal cord injury when she was young, Gem is living life to the fullest. The Wheelsnoheels mission is to show that there is a happy, confident life with or without disability and Gem uses her love for hair and fashion to prove it! Whatever you wear, Gem wants you to know that your style will always be good enough…

There’s so much pressure this time of year.

My name is Gem, and I’m am the founder of Wheelsnoheels which all started when I created an Instagram account.

I am a wheelchair user, after suffering a T10 spinal cord injury when I was nine. Before starting Wheelsnoheels, I used to be so self-conscious. I’d get stared at and have always felt people treated me differently. I used to hate my legs since I’ve lost all muscle tone in them, my knees are odd looking, and my feet are completely paralysed. I used to hide them away under baggy trousers, and never look at them. However, over time, I have come to love my body and who I am.

I have terrible circulation in my lower body so I’m always freezing. This used to prevent me from wearing what I want. Now, if I want to wear a glitzy party dress with UGG boots or trainers, I will. If I decide to wear a thermal vest under ball gown I will, I dress for me!

You are perfect the way you are.

The main message of Wheelsnoheels is to love yourself for who you are. To be happy with you. In a world where every photo is filtered 17 times, and everyone has fillers, botox and looks like a Kardashian, it’s hard to know what is real, and what is enhanced.

You’ve probably heard the questions “what are your resolutions?” or  “what are you going to change for 2018?” But, do we really need to change anything?

The answer is no. You are enough. You are perfect the way you are.

Happiness truly comes from within. Will dropping a dress size really make you happy? Will changing your style or your hair really make you happy? The answer is probably, no.

What you see on social media is not real.

Loads of the photos that we see online are enhanced and airbrushed. You’d be surprised…’Getting the right shot’ takes hours and hundreds of pounds worth of equipment. You see people being sent to exotic destinations all over the world, but what you don’t see is the crew of photographers, makeup artists, costume designers and lighting technicians accompanying them!

Over time, you compare yourself to those images and say “I wish I looked like that…”. What we don’t realise is that when we compare ourselves to others, we’re telling ourselves that we are not good enough. The result? A negative impact on our well-being. Well, I’m here to tell you that you are always enough!

After all, why be somebody else? Everyone else is taken!


Follow Gem:

Instagram: @wheelsnoheels_
YouTube: https://www.youtube.com/channel/UCNP1tYcve1MtivJtDjHsO-g/about

As a talented dancer, Kat Hawkins didn’t always believe that anybody could dance. It was a difficult journey for Kat to realise that all bodies are worthy of expressing themselves through dance. Here’s how Kat discovered that however you dance, you deserve to have your own rhythm this new year…

The words are in my head forever.

“I’m really sorry but we’re going to have to amputate your leg, it’s not healing.” What followed is a blur, it seems that the human body has the capability of protecting you from the worst moments, fading the edges so it’s not as sharp as it should be. I remember screaming out loud. Again it’s not a scream in my memory, but a tempered groan of pure pain. My first thought was dance. My one love, gone forever…

Without legs, I couldn’t dance. No way. It wasn’t possible.

I was 18, and in my third month of sleeping in a hospital bed, hospital food, medication, the painful 8 pm ending of family visits. The news that I would need my leg amputating below the knee was almost too much to deal with. Almost.

A few months down the road, and with both legs amputated, I was in a physio session talking about how dance was helping me learn to walk on prosthetics quickly. “It’s your core strength balance,” my physio said, as I struggled to hold on to the bars that were stopping me from falling straight on to the floor while pulling my incredibly baggy jeans up around my waist. The months of life-support, medication, meningitis, feeding tubes and surgeries had taken their toll on my weight. “We have had amputees dance before, it won’t be anything like you’re used to, but we might be able to get you back to a club on the dancefloor.”

No, I remember thinking. This is not what dance is to me. It’s really moving, it’s spinning, it’s circles and swirls. It’s jumping so high you might as well be flying.

No, dance is not for me anymore, that has been taken from me and it’s gone. And so, I pushed dance away. I shut down thoughts about it. I moved choreography ideas into a sealed box and silently cried after every dream in which my legs were back and I was dancing.

Until one day, I found Candoco whilst looking for disabled dance classes online and a glimmer of hope re-opened. They were a professional dance company made up of disabled and non-disabled dancers. Their view of the human body in all its differences and its place in dance changed my entire outlook on who is an isn’t a dancer. Suddenly every misconception I’d ever had was challenged.

Anybody can dance, all bodies are valid, all bodies are interesting and worthy and able of expression. How had I missed this?

That was it. I knew I needed to move again, to dance. At first, literally with nobody watching and then, as I got used to my changed body, with others and in front of an audience. Growing up, all I knew about dance really was of one body type with mild variations. Two arms, two legs, mostly slim, mostly average height, standing. But, what is dance really? It’s so much more than set routines or steps. It’s humans revealing, it’s humans interacting, learning, showing and enjoying.

That’s the most important thing for me. I enjoy dance again, and I hope you can too.


Keep up with Kat:

Instagram: @amputee_kat
Website: amputeekat.com

Daniel wakeford

For Autism Pride Day, we thought we’d share our Q&A with musician Daniel Wakeford – a Brighton based performer who appeared on the TV show Undateables. The uplifting and heartwarming dating show follows single people who have various conditions such learning disabilities or Tourette’s and proves that no matter who you are, love wins and nobody is really ‘undateable!’ Daniel appeared on the show in 2015 and after several more television appearances, DTL caught up with him to see what he’s been up to…

DTL: Hi Daniel, thanks for chatting with us! Firstly, can you tell us a bit about yourself in your own words…
Daniel: I’m a singer and songwriter, I’ve got 2 albums, ‘Daniel Wakeford’ and ‘The Songs of Gigs’. I’m 29 years old, I live in Brighton, and I’ve got autistic spectrum disorder.

DTL: What have you been up to since going on The Undateables?
Daniel: I’ve been doing really well and I’m really proud of that. My favourite bit of The Undateables was when they filmed last year in Todmorden.

DTL: Can you describe a day in the life of Daniel?
Daniel: I work in a book shop in Brighton and I go to the gym on Mondays. On Wednesdays I do tae kwon do. I work at the Cancer Research shop on Fridays. The other days I’m chilling, planning, doing chores or rehearsing.

DTL: When you’re on tour, what’s the best thing about performing?
Daniel: I love performing, I really do love my fans and everyone recognises me when we’re on tour and I really do love doing parties with my band.

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DTL: You’re such a confident person, what’s your secret?!
Daniel: I would love to say to my fans when I’m on stage that it’s important to be yourself.

DTL: Can you name one person who has been an inspiration to you?
Daniel: Tom Cook as I have my singing lessons with him and we are the songwriting team like Benny & Bjorn from ABBA and he’s helped me make all my music.

DTL: What have you done recently and what’s up next?
Daniel: I performed again in Todmorden and we went to Islington Mill in Salford, I also played The Great Escape Festival in Brighton. I’ve also got some holidays coming up at Butlins and Ibiza!

DTL: What’s your proudest moment so far?
Daniel: When we played in Huddersfield at the Rhubarb cafe’s “Beat it club” where I performed to lots of other people with disabilities. It was a great night.

DTL: What do you struggle with:
Daniel: I struggle to find my words properly.

DTL: Words of advice to other people with autism:
Daniel: You must try and never give up!

DTL: Anything else you’d like to add?
Daniel: I’ve got some things for sale online and at gigs, like T-shirts, CDs and badges and stickers!

To keep up to date with what Daniel is up to, check out his Facebook or follow him on Twitter

Viktoria Modesta

“Forget what you know about disability”

At the age of 15, Viktoria Modesta made the decision to fight for her mobility by pushing for the amputation of her left leg below the knee. As a result of this monumental decision, Viktoria was subsequently empowered to pursue a career in performance. Sporting fiercely innovative prosthetics, Viktoria strutted into mainstream popular culture revolutionising the perception of disability, bringing The Bionic Woman into the spotlight and promoting body positivity. DTL caught up with Viktoria…

DTL: Hi Viktoria! Can you tell us a bit about yourself and how you became known as ‘The Bionic Woman’?
Viktoria: I’m a singer, musician and model who has come to be known as The Bionic Woman as a result of a surgery I underwent in 2007 to remove my lower left leg.

DTL: How do people respond to your amazing prosthetics?
Viktoria: It’s usually very positive, for a lot of people it kind of blows their mind because it’s a completely new feeling that they are experiencing when looking at someone with an artificial body part or rather someone who in biological terms, is not complete. I think there isn’t much that can be argued with when you transform a negative situation into a positive.

DTL: What has been your recipe for success?
Viktoria: Believing in my dreams and maximising all of my talents, that’s been key. I have had a lot of people over the course of my life and career steering me into different directions that are more profitable or are more commercial. I’ve had people also telling me that I was crazy or they didn’t understand why I did what I did. In retrospect, these comments have been totally useless and only positive, enthusiastic thoughts and actions have been fruitful.

DTL: What are your most prominent challenges, and how do you overcome them?
Viktoria: I think the biggest challenge is motivating myself. That can be hard. I don’t have a boss or a manager and I very much drive everything that happens. Sometimes the drive happens by people contacting me to do various projects but often I have to find the discipline to get out of bed, send emails and just imagine the next step.

DTL: Do you think that the media has a negative impact on young people in terms of body image and self-confidence?
Viktoria: Consequently yes – but I think that the media now can be influenced by people much more. The important thing to remember is that originally, the media was paid for by brands who wanted to sell stuff and there were basic rules that worked which were mostly based on negative feelings and feeding insecurities. However, media is now diluted by social media and the people out there are speaking out. In that respect, social media has a lot of power even though it still goes back to someone making money, I think the celebration of diversity that is appearing is a positive thing.

DTL: Our research found 63% of those with a physical ‘disability’ are likely to experience extreme bullying and social exclusion. What advice would you give to any of our readers who may be experiencing bullying or feel like they don’t fit in or doubt themselves because of attitudes towards a ‘disability’?
Viktoria: Do not despair, whatever bubble you don’t fit into, there is always another group of people out there who will accept you.

“Whenever someone is being mean, it’s mostly their problem; inability to show kindness and understanding is the thing that drives people to unacceptable behaviour.”

It’s a big world out there whether it’s going on the internet and finding like minded people or simply continuing to believe in yourself and staying optimistic, that’s really key.

DTL: Have you ever experienced bullying? If so could you tell us what happened and how you dealt with the experience?
Viktoria: Absolutely. My teenage years were brutal, especially at school. I left school at 14 and never went back. My salvation was mixing with people who were older than me and getting into more creative circles where self expression and individuality was valued and not looked down upon. The creative crowd, as well as the creative industry, really helped me to nurture my individuality.

“I had days when I was around 13 or 14 where I wanted to commit suicide as a result of the hassle I received at school. When I felt like there was no way out, I sat through it and eventually realised that there is always a way out.”

Whether it’s removing yourself from standard education and following your curiosity path to self and home education, there isn’t a right or a wrong way. The important thing is to keep yourself safe and do whatever it takes to be in an environment that encourages your ambitions and attributes.

DTL: What is next for Viktoria Modesta?
Viktoria: The future is super varied. I’m working on finding the right collaborators for a new record, lots of tech fashion and some awesome futuristic projects around the body and technology. I also have a guest starring role in an awesome sci-fi TV series that’s coming out in the summer. I wanna do everything I know, bigger and better.

DTL: What motto do you live by?
Viktoria: Stay curious, don’t be afraid and start again when you don’t succeed.

DTL: Is there anything you would like to add?
Viktoria: Only those who believe in magic, find magic.

If you’re seeking help or advice to do with bullying due to a disability, visit our community or get help from our other related articles.

Check out the music video for ‘Prototype’ here:

Keep up with Viktoria on Twitter @VIKTORIAMODESTA

Viktoria Modesta image courtesy of Lukazs Suchorab.

We caught up with Lily Scott from The Undateables

DtL: Hi Lily! Can you tell us a little bit about yourself?
Lily: I am 19 and I have Williams Syndrome which means I learn slowly. Sometimes I struggle in social situations because I try to be so friendly and other people think it is weird that I am so friendly to them! I go to college and my course is called Independent Life Skills so I am learning how to be independent. I live with my mum, my dog and my cat. One day I would like to live independently. I like to paint my nails, go to Speedway with my dad, have sleepovers with my sister and go on ghost hunts. I am a happy person but I can be sad and I worry a lot. This is because I have Williams Syndrome.

DtL: What was it like going on The Undateables?
Lily: Going on The Undateables was really good fun. I liked being on TV and filming for the show was fun. Going on a date gave me lots of confidence and it has taught me how to speak to people who I don’t know very well. I would like to go on more dates and meet new people.

“Going on The Undateables was really good fun”

 

DtL: Have you ever experienced bullying? 
Lily: I don’t think I have been properly bullied, you know like properly. It’s just when people use bad language or look at me funny that I don’t like it. It makes me feel uncomfortable and sad and I think they’re rude.

DtL: What motto do you live by?
Lily: Don’t bottle it up. Good things take time!

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DtL: What advice would you give to others living with Williams Syndrome?
Lily: This is difficult. It’s important to listen to the people who love you, because they can keep you safe. Sometimes my sister tells me not to speak to some people if she thinks they are not kind and I do not like it when she tells me what to do, but I know I have to listen to her because she cares. Sometimes if I am feeling sad I do not want to go out to college or my youth club, but it’s important that I do go so that I don’t get lonely. So I would tell people with Williams Syndrome to keep socialising with the right people.

DtL: What is your perspective on true love?
Lily: It is hard to find true love! I would like to find true love. I think it would feel very happy. It’s difficult for me to find true love, I need help meeting new people because I struggle with reading and writing and using the Internet, which means it is tricky for me to date and organise dates. Most people do this easily. I know that I will find someone one day. Everyone deserves to be loved.

“Listen to the people who love you, make sure you do this, even if they annoy you”

 

DtL: What do you think about Ditch the Label?
Lily: I think Ditch the Label is an incredible charity. They give great advice which everyone should listen to. They are inspiring and encourage people to be who they really are.

DtL: What advice would you give to those who might be experiencing bullying right now?
Lily: I would say don’t get involved, walk away, don’t put yourself into danger. Speak to somebody, always make sure you go to a person and then they can help you. If you can’t tell somebody using words then write it down or draw it. Listen to the people who love you, make sure you do this, even if they annoy you. They are only annoying because they love you. It is not your fault that you are being bullied and you do not deserve it.

DtL: Is there anything you would to add?
Lily: Social media can make people feel really sad. I would like to say that when you look at other people’s pages on social media, don’t feel sad, because I’ve learnt that a lot of it is fake and not true.

We talked disability and challenging stereotypes with Adam Pearson

DtL: Hi Adam, could you tell us a little bit about yourself and your story so far?
Adam: Salutations. My name is Adam Pearson and I’m a TV presenter, actor, speaker and campaigner hailing from sunny, sunny Croydon.

DtL: As a campaigner against disability hate crimes you have done great work in raising awareness and educating people. Why do you think disability hate crimes are still largely overlooked and under-reported?
Adam: I think it’s a mixture of things, rather than a single key failing that you can look at in isolation. As a disabled person it is imperative that I am aware of my rights – in that regard the buck stops with me. There are also systemic issues that also exist in how hate crimes are reported, recorded and sentenced that need to be called into account and changed. The general public and the police need to be more aware and confident when reporting and recording these hate incidents. There also needs to be a higher degree of accuracy when it comes to sentencing, legislation of any kind is only worthwhile if it is implemented properly and effectively.

“We, as a people, need to break through this assumption that disability hate crime is a disabled problem, for disabled people”

 

DtL: What needed changes would you like to see happen in 2017 with regards to disability hate crimes and bullying?
Adam: We, as a people, need to break through this assumption that disability hate crime is a disabled problem, for disabled people. It’s a much wider problem than that. As a disabled person, if I am the victim of an assault, the effects of that reach much further than simply me getting my head kicked in. It affects my family, our police and legal system, and if handled incorrectly sends a message to society that this kind of criminal behaviour “isn’t a big deal”.

As things currently stand, legally disability hate crimes are sentenced more leniently than crimes that have been aggravated by race and religion (a 6 month uplift as a posed to 2 years) so there already exists a dangerous hierarchy that values certain minority groups over others. If, legally, you have identified groups who are deemed to need protection under the law, they should be protected equally.

DtL: Looking back, what advice would you give to your 14 year old self?
Adam: Retrospect is a wonderful thing. In the moment, being bullied was a rather traumatic experience, probably one of the worst of my life. When you are that age you’re starting to discover who you are, find your own way in the world whilst at the same time fighting a losing battle with your own hormones AND getting your GCSEs.

When you add being bullied and having a disfigurement to the aforementioned it turned me into a bitter, moody, angry teenager. I did things I’m not proud of and prioritised being “popular” and “cool” over working hard. I dealt with being bullied incredibly badly.

I can never undo those things, and to be honest I don’t think I would. I firmly believe the experiences we go through shape us as people and make us stronger and better at the end of it all.

If I met my 14 year old self, knowing what I know now, I’d tell myself it gets better. There is certainly life after secondary school and that one day your boundaries will extend far beyond the four walls of the school playground. The people that matter don’t mind and the people that mind don’t matter. There is a beautiful quote by a poet called Shane Koycan – “If you can’t see something beautiful about yourself get a better mirror”.

“If you can’t see something beautiful about yourself get a better mirror”

 

DtL: Why do you think people exhibit bullying behaviour?
Adam: It is very easy to make excuses for people when answering this question, and I want to preface this by saying that there is no excuse for disability hate crimes. With that being said there are misconceptions that surround disability, which if left unaddressed and allowed to fester can create an “otherness”. This “otherness” can lead to a number of complex emotions such as superiority, fear, anxiety and even revoltion. It is these deep-seated emotional responses that can contribute to these hostile actions and responses.

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DtL: What advice would you give to someone who is in the middle of dealing with bullying/trolling/disability hate crimes?
Adam: First and foremost tell someone, there is no shame or weakness in asking for help. Make sure you are as internet-savvy as possible. I’d advise any parent to be as knowledgeable as they possibly can be with regards to social media (Facebook, Twitter and Instagram). This isn’t so that they can tweet themselves into oblivion, but more so that if your child experiences trolling / online abuse, you know the steps to take to ensure that they are as safe as possible online.

“There is no excuse for disability hate crimes”

 

Also as I stated earlier, be aware of the laws and your rights surrounding both social media and its terms and conditions etc as well as the actual law surrounding hate crime. When it comes to reporting these incidents, knowledge truly is power. If you call the police and say “I’ve been the victim of a crime – here are the laws that have been broken” it carries exponentially more weight than saying “Someone hurt my feelings or was mean to me, I think it might be illegal”.

Finally and most importantly, know that it isn’t your fault. All too often people who experience these crimes take on a merit of responsibility when more often that not they are the innocent party. No matter what happens, don’t blame yourself and do not stoop to other people’s levels. Self-respect is more important than any tweet or comment ever could be.

DtL: What are your most prominent challenges living with type 1 neurofibromatosis (NF1)?
Adam: People make assumptions, these are now even more prevalent in our image-obsessed selfie culture. In that, we have somehow done the word “beauty” as massive disservice by a) trying to quantify it and more recently b) treating it as a skill or merit when in reality it all comes down to genetics.

As someone with a facial disfigurement I find myself doing 90% of the legwork in social interactions. When people meet me for the first time I have an absolute plethora of misconceptions I have to disprove, from people assuming I’m perhaps a bit simple (I have a degree) through to the assumption that I am desperately lonely and that my life consists of nothing more than Friends reruns and feeding my many cats (I have no cats).

“When people meet me for the first time I have an absolute plethora of misconceptions I have to disprove”

 

My disability in and of itself doesn’t cause any difficulties that I can’t deal with – whilst it’s by no means easy (I’ve had 33 operations) it’s other people’s reactions that cause the vast majority of them. It’s often referred to as the ‘social model of disability’.

DtL: What three words best describe you?
Adam: Funny, geeky, charming, intelligent (let’s see who gets this joke).

DtL: What has been your proudest moment so far?
Adam: I was recently nominated for Presenter of the Year at the Grierson Awards. Whilst I didn’t win, to be nominated alongside names such as Louis Theroux in front of my peers was an absolute honour. I think it is crucial that as a disabled person I should be expected to compete on the same level as the rest of my industry. Disabled people in any industry want to be challenged, pushed and developed, not simply indulged.

DtL: What does the future hold for Adam Pearson?
Adam: Well…I can confirm you’ll be seeing me on TV again and perhaps on the silver screen. I’m also slowly building up a public speaking career and am available for wedding, birthdays and funerals.