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

Appearance, bullying, changing faces

10 things not to say to someone who has an unusual appearance

1. What’s wrong with your nose (or whatever)?
If a person wants to speak to you about their face, hair, skin, hands or any other aspect of their body, they will. If they haven’t mentioned it, the chances are that they don’t want to talk about it. This could be because it makes them feel embarrassed, anxious, sad, depressed…or maybe they just have other things to talk about. You may well be curious but be sensitive and wait for them to mention it first, if at all.

2. Is it a contagious disease?
Not only is the answer to this almost always “no”, this is a question which will only make a person feel more self-conscious and alienated. For example, a congenital condition such as Treacher Collins Syndrome is hereditary but is in no way contagious.

3. Do you look like that because you live an unhealthy lifestyle?
No. Never “blame” a person for the way that they look. Aside from the (most important) fact that there is absolutely nothing wrong with looking different, having a visible difference such as a cleft palate or eczema is something that is out of a person’s control.

4. Have you tried changing your diet? Or taking steroids? Or having an operation?
However well-intentioned your advice is, the person just does not need it. They probably have a doctor for that. Your job is to react to them in the same way as you would to anyone else; with kindness and respect.

5. I’m sure it will get better soon.
You’re not sure. So don’t say it. An empty platitude for someone with a chronic health condition which causes them to have an unusual appearance, such as cerebral palsy, is distinctly frustrating, irritating and unhelpful. Also, for some people, there is actually nothing to “get better”. An unusually shaped ear or a birthmark on the cheek is a visible difference but does not necessarily impact on a person’s health.

6. I know how you feel-I have an awful spot on my chin.
Trying to comfort someone by telling them that you know how they feel can actually isolate them further. The comparison shows that you don’t actually understand and are underestimating what they are going through. Also, calling your spot “awful” will make the other person wonder what on earth you are thinking about their own unusual physical feature.

7. You’re so brave and inspirational.
Having a unique appearance does not make a person brave and inspirational. They may well be a brave and inspirational person but they would be whether they looked different or not. A visible difference does not put a person in a different category to everyone else.

8. Oh you look different? I didn’t notice.
You mean well but the other person will know you are being dishonest. If someone has an unusual appearance, they are aware that other people can see it. If you say you didn’t notice that they look different, it can make a person feel patronised and unsupported.

9. At least it’s just the way you look, it could be much worse.
Please don’t try and measure another person’s feelings. Looking different can be difficult at times. It is not “just” appearance. Unfortunately, in today’s society, people are judged and treated differently on the basis of how they look. A survey by Changing Faces found that 9 out of 10 people unwittingly judge people who have disfigurements to be less attractive, less likely to succeed and less easy to work with. In many cases, living with an unusual appearance can have a significant psychological impact on a person and their family too. And anyway, being told “it could be much worse” is not exactly the most uplifting thing to hear.

10. I’m sorry. Yes, living with a visible difference can be a challenge but it is not a life sentence.
The person does not need your condolence or pity. Instead, just as you would do with any other friend, make sure they know that you are there for them if they ever want to talk.
So, what are you going to do when you next meet someone who looks different to you and probably to most of your friends too? Hopefully you’ll treat them like you would anyone else.

https://www.changingfaces.org.uk/

 

 

Tyler Clementi

In 2010, Tyler’s death became a global news story, highlighting the impact & consequences of bullying

Tyler was smart, funny and talented, with a big heart and a determined spirit, but internally he was struggling with depression and suicidal tendencies. He ultimately took his own life at just 18 years old. It has been surreal to piece together these two very different people: the Tyler I knew and loved, and the one I never knew at all.

I have struggled to process how anyone could want to hurt Tyler. He was hard not to love. He never had problems with people that bullied in high school, so when I learned that he had been violated and abused by his college peers, I was in total shock. Tyler was the good kid that never got in trouble. And when he finally was in trouble, he didn’t know what to do.

In September 2010, my brother was starting his freshman year at Rutgers University in the US. He had come out to me (actually, we came out to each other) earlier in the summer. I was very supportive and encouraged him to reach out to me no matter what the situation. Tyler came out to our parents only two days before leaving for college. They were shocked, but they advised him to be careful and guarded in his new environment. A new living situation with strangers can be risky, and lesbian, gay, bisexual and transgender young people are at a higher risk of being targeted than their straight peers.

“Tyler was the good kid that never got in trouble. And when he finally was in trouble, he didn’t know what to do”

 

My brother had been closeted in high school and he was excited to finally be out, to be himself for the first time. He was expecting to find a world that embraced him, but instead he soon realised that the start of his college experience had become a nightmare scenario that was far worse than he could have anticipated.

Tyler asked his roommate for and was granted permission to have privacy in their shared dorm room so that he could be alone with a date. What he didn’t know was that when Tyler’s roommate left, he went across the hall to another student’s dorm room and turned on her computer and remotely accessed his webcam, which he had left deliberately pointed at Tyler’s bed. The roommate invited a group of students to have a “viewing party” in the room and sent tweets to students at Rutgers as well as high school friends, detailing exactly what was going on. Tyler’s privacy was violated in a vulnerable moment.

My brother soon realised what had happened. He read his roommate’s Twitter account, which was filled with nasty, homophobic comments about Tyler and the encounter, which clearly was intended to be private. Tyler spiralled into crisis mode, and could not see any way out. I was there, and would have dropped everything to go to him and help him. But he didn’t reach out to me. The shame and stigma of what Tyler experienced pushed him toward a permanent choice that cannot be undone. That much cruelty and intolerance was too much for one gentle, shy young man to bear.

Over the last several years, my family has had to grapple with the questions of why this happened, and how we could have prevented it. No matter how much we want to, we can’t travel through time to bring Tyler back. But we have channeled our love for Tyler to serving other youth who feel isolated and targeted by bullies by creating the Tyler Clementi Foundation. We have chosen to use our personal tragedy as a teaching tool for others, so that more lives like Tyler’s are not senselessly lost. This fall, our foundation launched a research-based initiative that we believe will help other families avoid the sort of tragedy and pain that befell ours: the #Day1 Campaign.

“The shame and stigma of what Tyler experienced pushed him toward a permanent choice that cannot be undone”

 

The two biggest questions we have wrestled with are: “Why would someone want to hurt or humiliate Tyler?” And, “How can we make sure that other youth who are being bullied reach out for help before they take a self-harming action?” #Day1 addresses both of these issues. While it may seem obvious that we should always treat others with respect and dignity, the reality is that middle, high school, and college level students are not hearing this message from their teachers or administrators at school.

The #Day1 campaign explicitly spells out for young people exactly how they are expected to behave towards their peers. It states that mistreatment and abusive, cruel behaviour that will not be tolerated against any student for any reason. After students have heard the #Day1 pledge, they know exactly what is expected of them as part of the school community, and there is no room for misunderstanding. If Tyler or his peers had heard this statement at the beginning of their freshman year, it may have drastically impacted the way he was treated.

In regards to my second question, I believe the biggest obstacle for young people reaching out for help is the shame and stigma they feel when they experience bullying and harassment. It is my hope and belief that by having teachers and school administrators read the #Day1 pledge to students, it will send the message, “You are not alone. You have nothing to be ashamed of. Let us help you. We are here to help, and we want to help.” When a student hears their school’s principal read the #Day1 pledge during an assembly, or their history teacher read the pledge in the classroom, it sends them the message that they are not the only person that this is happening to. It lets them know that their school has an environment of support and acceptance for those who are different, and they are empowered to speak out if their dignity is being violated in any way.

Written by James Clementi (Tyler’s brother)

Learn more about the Tyler Clementi Foundation at http://tylerclementi.org