10 things you need to know about Down syndrome

My name is Brittany Schiavone and I’m an entrepreneur, an actress, a sister, a student, and a 27-year-old woman thriving with Down syndrome. Two years ago, I founded my own nonprofit corporation called Brittany’s Baskets of Hope, and my mission is to spread resources, support, and hope to families who have recently welcomed a baby with Down syndrome into their lives. Today, I’m here to tell you about Down syndrome and, most importantly, to remind you how great the world would be if we all treated each other with respect and kindness and cheer because, really, we’re all more alike than different.

In that spirit, here are 10 things you need to know about Down syndrome:

1. Down syndrome is not scary or bad.
It is not a disease or an illness, and it happens when a baby inherits one extra chromosome, the 21st. But, really, people with Down syndrome are friends, sisters, brothers, students, athletes, and artists just like you.

2. Individuals with Down syndrome go to school.
I started when I was six weeks old! They also graduate from high school, and some even attend college. I’m enrolled in college classes right now.

3. Just like you, individuals with Down syndrome are all unique.
We all have our own personalities and interests. I love to dance, act, and sing, while other people with Down syndrome may love to cook or to play football. Sound familiar?

4. When we talk about people with Down syndrome or other different abilities, it’s important to use what we call “person-first language.”
In other words, to remember that we’re people first, and that our disabilities are just one part of us. So instead of saying, “the autistic boy” or the “Down’s baby,” say: “the boy with autism” or “the baby with Down syndrome.” Because we all deserve not to be defined by labels but celebrated for everything that makes us who we are.

5. People with Down syndrome have jobs, earn money, and are active members of their communities.
Not only am I in charge of my nonprofit corporation, but I work at Party City. It’s important to remember that no matter who we are or how we’re born, we all have purpose.

6. And speaking of parties, individuals with Down syndrome hang out with friends and go to parties and concerts and movies.
Now that I’m 27, I even love to spend Friday nights with my girlfriends, gossiping over appetisers and mixed drinks.

7. Adults with Down syndrome are adults, indeed.
Once we’re in our twenties and beyond, we lead self-directed lives and some of us even move out into our own supported apartments. I have staff that support me in doing everything I want to do and I pride myself on being the boss of my own life.

8. Individuals with Down syndrome attend proms, date, gossip about celebrity crushes, and have real life romantic relationships.
If we’re talking about celebrity crushes, aren’t Derek Hough and Chris Colfer the cutest?

9. This one’s important. It’s never ok to use the r-word toward anyone with Down syndrome—or anyone at all.
The r-word is a derogatory, mean word and it hurts me when you say it. It should have no place in our vocabulary. Instead, we should lift each other up with kindness and love.

10. At the end of the day, we’re all more alike than different, and our differences do not make us less or better than anyone else.
Our differences make us beautiful and unique and allow us all to have different talents and gifts to share with the world. Remember that you have worth and purpose and that, no matter who you are, I know you can do anything you dream, as long as you put your heart and your mind and the unique essence that is you into it. Be you, courageously.

http://brittanysbasketsofhope.org

Recently awarded “Emerging Leader” at the Australian Government Positive Body Image Awards, former Paralympian Jessica Smith has emerged as one of Australia’s most avid advocates for positive body image

Jessica Smith is not only one of Australia’s most sought after motivational speakers & presenters, she has also been internationally recognised as one of the most influential role models of this generation and is on a mission to create much needed awareness within society about the importance of positive body image. In 2015 Jessica was a state finalist for Young Australian of the Year and has also won a Pride of Australia Medal. We sat down with her to find out what inspires her activism.

DtL: Hi Jessica, could you tell us a little bit about yourself and your story so far?
Jessica: I was born missing my left forearm, then as a toddler, I suffered horrific third degree burns to 15% of my body after accidentally knocking a kettle of boiling water on myself. I didn’t exactly have an easy start to life. In a world where so much emphasis is placed on appearance, growing up I felt as though I simply wasn’t good enough and didn’t fit in. Low self esteem and an inability to accept myself unfortunately led to a decade long struggle with bulimia, anorexia and depression – desperately searching for perfection in a world where I felt so isolated & alone. While all of this was going on behind closed doors, to the rest of the world I was a high achiever, having excelled at school and University and also being a prominent athlete representing Australia in the sport of swimming from the age of 13 to 20. I successfully represented Australia at the 2004 Athens Paralympic Games, however my elation soon turned to devastation when the reality of my eating disorder took hold – I didn’t swim as expected. I returned to Australia, was admitted to a rehab facility and forced into early retirement. I’ve been in recovery for many years now and I have made it my mission to work tirelessly and proactively to promote positive body image and raise awareness about the seriousness of eating disorders & mental illness.

“Low self esteem and an inability to accept myself unfortunately led to a decade long struggle with bulimia, anorexia and depression”

 

DtL: You are very open about how you struggled with an eating disorder. Could you tell us how this impacted you and why you think it important to raise awareness?
Jessica: My eating disorder was destructive; It destroyed my youth and ruined so many wonderful opportunities, including my international swimming career which ended abruptly when I was just 20. I have many regrets about how I treated my body when I was younger, but today I’m so grateful that I am in recovery, and I have a responsibility to be a voice for others that are struggling and I also have a responsibility to give back to the people who formed part of my support network – my way of showing gratitude is to pay it forward and generate more awareness. The more we talk about body image issues, the easier it is to make an impact within society. We all have a responsibility to be part of the conversation.

“We can’t continue to blame the media industry if we buy the magazines and watch the shows that directly target our insecurities”

 

DtL: Do you think that the media has a negative impact on young people in terms of body image and self-confidence?
Jessica: The media certainly has a powerful way of influencing our thoughts and behaviour and I do believe that with the introduction of social media, young people in particular are constantly bombarded with messages that tell them they aren’t good enough and that they need to change in order to be beautiful or accepted within society. However, I think we need to avoid blaming the media and instead take proactive action by educating ourselves. We can’t continue to blame the media industry if we buy the magazines and watch the shows that directly target our insecurities. We have a responsibility to develop a critical eye and educate ourselves about how and why the media target our body image and self confidence – they do this because they are trying to sell us something. So it’s essentially up to us, to say NO and to take a positive stance by not allowing the negative messaging to impact our lives. We do this through more open and honest communication with those close to us.

[full-width-figure image=”https://www.ditchthelabel.org/wp-content/uploads/2016/12/jessica.jpg”]

 

DtL: What has been your proudest moment so far?
Jessica: Becoming a mother.

DtL: What are your most prominent challenges, and how do you overcome them?
Jessica: To be completely honest, my disability has never really been a challenge that I’ve had to overcome, rather I see it as an opportunity to learn new ways of doing things. Throughout my life some physical activities have been more difficult than others, for example learning to tie my shoe laces, or doing hand stands at school. But I’ve always found my own way of doing things. Since becoming a mother (I have a one year old daughter) my disability has been more profound in my life due to the fact that I have to do everything while holding a child. Even still, I have always had the mindset that I can do anything, I just have to be patient with myself and allow myself to find a way of doing things that I’m comfortable with.

“My disability has never really been a challenge that I’ve had to overcome, rather I see it as an opportunity to learn new ways of doing things”

 

DtL: Our research found 63% of those with a physical disability are likely to experience extreme bullying and social exclusion. Have you ever experienced bullying and if so how did you combat it? 
Jessica: I have definitely experienced name-calling and people pointing and staring, but what hurt me the most when I was growing up was being excluded. Exclusion isn’t offered considered a type of bullying, however in my experience being ‘left out’ or deliberately excluded hurt more than any verbal or physical attack. Feeling rejected by my peers had a profound negative impact on my social interactions, I was often withdrawn and referred to as shy, but this was due to my fear of being left out – it was a very vicious cycle. It wasn’t always easy, but I forced myself to ignore this behaviour and instead surround myself with people who did value me and people who did want to be in my presence. It was also important for me to talk to people that I could trust, family members and close friends. I found that talking to people about my experiences made the heavy burden seem much lighter. Of course with age and experience I have learnt not to let anyone else’s actions impact my feelings. I’ve learnt that no one else can take away the power of my own feelings.

“In my experience being ‘left out’ or deliberately excluded hurt more than any verbal or physical attack”

 

DtL: You have written a children’s book entitled “Little Miss Jessica” which is about a little girl with one hand, on her first day at school. What inspired you to write the book?
Jessica: When I found out that I was having a daughter I felt an immense about of pressure to ensure that I ‘practiced what I preached’ – I knew that I had to lead by example, which for me meant showing her through my every day actions the benefits of living a positive life by being respectful to yourself as well as being tolerant of others. After years working with youth I recognised that my message about positive body image needed to be conveyed to a much younger audience through education. So I decided to get creative and write a children’s book. When I asked myself what it was that I really wanted to achieve by writing a book, the answer was simple — prevention, and leaving a legacy for my daughter. I looked back to my own childhood and realised that there was a complete lack of diversity in characters from books I had read. Don’t get me wrong, there is nothing wrong with characters such as Barbie, Cinderella, Batman or Superman; these are the characters that ignite our imagination and encourage us to fantasise.

“Children also need to see and read about characters that represent what they see in real life”

 

However, children also need to see and read about characters that represent what they see in real life. They need to see characters with imperfections and characters with differences. Little Miss Jessica Goes to School; follows the journey of Jessica, a little girl with one hand, on her first day at school. This can be a daunting experience for any child, especially when they look different. But the book isn’t simply about a young girl with a disability; it is so much more than that. It’s about her journey in discovering that we are all different. In the story she meets other characters all who have a different appearance to her, and together they learn to appreciate who they and how they look, in spite of their differences. It’s a beautiful story that tackles issues such as self esteem, disability, body image, friendship, acceptance, tolerance and social connection and ultimately delivers a fundamental message for younger generations about self acceptance – a message that reminds us all that being different is OK.

DtL: What does the future hold for Jessica Smith?
Jessica: I’m in the process of writing two more books that will follow Little Miss Jessica’s journey through exciting new adventures, so watch this space and please follow me on social media so that you can stay updated!

 

 

Comedian Josh Blue on the 10 things you should never say to a disabled person

1. What happened to you?
The response to this should be an obvious one: What if someone asked what happened to your…FACE… See? It doesn’t feel good.

2. Are you drunk?
Nope! And even if I was, I’d still be walkin’ like this.

3. Let me do that for you!
Chances are, they’ve already made it this far without your help, they probably don’t need it. If someone does need your help, they’ll ask for it.

4. Is that contagious?
Only if you want it to be, baby?

5. Can I have some of your medication?
Not for free!

6. How do you get rid of that?
Counter question: How do I get rid of you?

7. You can’t do that
Just watch me!

8. How much government’s assistance do you get?
We’re very capable of having jobs and we enjoy working! (Most days)

9. Have you ever had sex?
That’s DEFINITELY none of your business. We’re just like anyone else – we like to keep our private lives, PRIVATE. If you are curious about sex with disabilities, I’m sure there’s a whole dark place of the Internet available for research.

10. Do you ride the short bus?
No…that’s my Uber over there.

We talked table tennis and multiple epiphyseal dysplasia with Paralympian Ross Wilson

Ross Wilson started playing table tennis when he was just eight years old. He had success in abled-bodied table tennis, and as a junior was ranked in the top ten in the country, winning two national doubles titles. However, as he got older it became clear that some physical problem was affecting his physical development, although exhaustive medical tests over a ten year period failed to discover the cause. Finally, after years and years of hospital visits, he got his diagnosis; Ross has a genetic condition called multiple epiphyseal dysplasia, which affects his bones and their growth. After getting his diagnosis, he started training with the GB Paralympic Table Tennis squad. Ross’s progress was rapid, and his first international season culminated in a silver medal in the European Championships in 2011. At the age of 17 he was the youngest member of the GB table tennis team in London 2012. We asked Ross some questions and he kindly obliged.

DTL: What are your most prominent challenges and how do you overcome them?

Ross: Since getting my diagnosis, I have been competing in the Paralympic scene. I love my sport and train very hard – although my disability means I am prone to injury if I train too much. This can be challenging, as I am always eager to push myself, but I can never push too hard otherwise there is a strong chance I will suffer an injury, and that could potentially prevent me playing in major competitions, which is obviously, my main goal as a sportsman.

DTL: What keeps you motivated?

Ross: I always feel privileged to represent my country; I want to make the nation proud, and this gives me the drive and determination to be the best that I can be. The best thing about my work, is that young people look to me as a role model. I hope to inspire the next generation and influence them in a positive way; I want them to know that you can achieve anything if you put your mind to it. I hope to support as many charities as I can, such as Ditch the Label.

ross
Ross Wilson

DTL: Our research found 63% of those with a physical disability are far more 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/ doubt themselves because of attitudes towards a disability?

Ross: Of course, everyone carries some sort of insecurity with them, but at the end of the day, the only opinion that really matters is your own. If you are confident within yourself, and that is the image you are outwardly projecting, other people are more likely to treat you accordingly. Follow your dreams and try to stay as positive as you can, no matter what.

DTL: We have consistently found that young people are restricted by gender stereotypes and face considerable social consequences for not conforming to them. What is your perception of masculinity in 2016 and what needs to change?

Ross: Even today, in 2016, stereotypes still exist and there is definitely a stigma attached to those who do not conform to what is considered, the ‘norm’. However, I do believe that these stereotypes are being addressed –  it is becoming more acceptable for a man to have, and show, a feminine side and vice versa. It has helped that several notable celebrities have spoken out about these issues over the last couple of years, but we still need to work together to rid society completely of gender inequalities.

DTL: What three words best describe you?

Ross: Kind, fighter and determined.

 

Follow Ross on Twitter

 

 

 

Comedian Shannon DeVido on how she usually answers these 10 common questions about being a wheelchair user

1. How do you go to the bathroom?

I didn’t do well in science, but from what I can tell, after I drink a lot of water or eat, after a few hours, my body lets me know it needs to come out…unless I eat Chipotle, then it’s only about 30 mins. Worth it though.

2. How fast does that thing go?

Sadly, not as fast as I want. If I had my way, I’d “pimp my chair” so it’d be able to go on a highway, but my family don’t think it’s very “safe”. Also, I often hear “you’re going to get a speeding ticket!” Nope. Not true. Not even in a school zone.

3. Can you have sex?

I think you need to buy me a nice dinner and be interested in my extensive Harry Potter knowledge before I answer this question for you.

4. Do you sleep in your chair?

This often comes from kids, so I will usually say, “No, because the stuffed animals on my bed would be lonely.” To adults I just eye roll.

5. Does she need something? (Asked to the person I’m with)

Hi! Down here! You can talk to me! I graduated college, Cum Laude. I’m pretty good at ordering chicken fingers.

6. Do you know [insert name here]? He’s also in a wheelchair.

Steve McSteverson? Yeah! He’s usually at the underground wheelchair meetings where we talk about stupid questions.

7. What’s wrong with you?

Plenty! Just ask my therapist! Honestly, I don’t mind when people ask me about my specific disability, but when it’s said in this curt manner it makes me feel like I should think there’s something wrong with me just for being a wheelchair user.

8. Is your boyfriend in a wheelchair too?

No, James McAvoy is not a wheelchair user… unless he’s playing Professor X. Then yes.

9. Can I get a ride?

How much are you paying me? Rates go up during peak hours and big events. #WheelchairUber

10. Do you need help?

Nope. I’m good. Thank you for asking. I promise I’ll ask if I need it.

**Disclaimer: I’m not actually dating James McAvoy. Sorry, rumour factory and apologies to his incredibly attractive wife.**

Written by Shannon DeVido

www.shannondevido.com

Hi my name is Jack, I’m 21 years old and I represented Team GB as a swimmer in the London 2012 Paralympic Games. I came 4th in the world for the 100 meters breaststroke.
If you saw me, you would wonder why I was a Para athlete and not an able bodied one. I don’t look like your normal disabled athlete – no wheel chair, no missing limbs etc. I suffer from a condition called Haemophilia – I have no factor VIII (8) in my body.  Basically it means that my blood doesn’t clot properly.  If you’re not a haemophiliac and you get a bad knock in something like rugby or football you would get a bruise – an internal blood clot, but my blood can’t do that normally, so I have to have injections of factor VIII (8) every other day. When I was little I had a lot of bleeds into my elbow, knee and ankle joints and they were left badly damaged – I can’t straighten my left elbow and sometimes I find it difficult to walk due to pain in my ankles and knees.  It is for this reason that I am classified as a Para Athlete.

So where does the bullying come into my life then?  I’ve been really, really lucky in that I’ve always had great friends that have looked after me. They’ve always tried to make sure I could join in with games and hang out with them. I loved football and cricket and was able to play when I was little as long as I wore lots of protection. At nursery I made some good friends who I went on to primary school with. They knew that I was a bit different and could get hurt much easier than they would. When I got to primary school though, I made some new friends and these other boys turned out not to be such nice people.

Sometimes haemophilia made the pain in my ankle so bad that I couldn’t walk but I was too small for a wheelchair so I would have to go to school in my buggy.  Some nasty boys laughed at me and called me “Pram Boy”.  My good friends always stood up for me and pushed them away – but as you probably know, even when your true friends have your back, bullying still hurts – really hurts in fact. I mean I always knew I was different (my Mum said I was ‘special’) but no one had ever hurt me before like those boys did.

I did get stronger as I went through school; managing to get there without my buggy more and more too.  They still made fun of me though– it wasn’t nice, it hurt a lot. I tried not to show how the bullying made me feel inside but it’s hard to hide, especially when you’re only little.

Those boys went on to a different high school than me – thank goodness, but I still see them around. They laugh at me and continue to make comments behind my back.  I’ve come to realise though that these boys are just sad people. They have fears and problems of their own and take this out on other people to make themselves feel big. It’s their loss if they can’t accept that everyone is different and I wouldn’t dream of swapping my life for theirs.

Life is never easy, regardless of who we happen to be.  All we can do is our best.  I have always tried to turn a negative situation into a positive one.  This attitude has helped me cope throughout my life and has guided me through the painful situations I’ve had to endure. Some people don’t have a very good view of themselves and instead of looking at their own character and situation to see how they might improve things, they look for someone to blame. This may result in them using bullying as a coping mechanism, which they’ll direct at someone like you or me. These people are not to be feared, they are to be sympathised with. This isn’t easy, especially when they’ve got friends in the class or group who appear to be on their side (at least on the surface). You feel like everyone is against you. I know its hard, trust me, but you MUST remember that not everyone is like them. In fact, lots of your classmates will actually be on your side, but are also too frightened to say anything.

It is really important that you speak to someone about the bullying – a parent, a teacher, a friend or relative – anyone who you trust that you know will listen.  You’ll be surprised by the amount of grown-ups that have experienced bullying themselves and so they’ll know what you’re going through right now and will want to help you. Remember that the one thing someone who bullies you fears is being found out and being shown to be picking on others who are more vulnerable than they are.
By sharing this story, I hope that it will help you – if only in a small way, to cope with the very distressing experience of bullying. You are not the problem so stay strong, speak up and remember you are not alone. You will get through this.

– Jack Bridge
You can keep up with Jack by following him on Twitter.