My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Sunday, March 14, 2010

We Cannot Run and Hide

An essay by Joyce: By now, most all are aware that a contest being run by the National Down Syndrome Congress, has been compromised by a sad, sick individual who thought it would be funny to distort the positive messages being conveyed and turn them into what he considered funny. When in fact what he did is crude, distasteful and just plain mean.

The work by this individual is exactly like that of a bully. Bullying is generally defined as an intentional act that causes harm to others and may involve verbal harassment, verbal or non-verbal threats, physical assult, stalking or other methods of coercion such as manipulation, blackmail or extortion. Simply stated: Bullying is when someone keeps doing or saying things to have power over another person.

Over the course of the last six months, I have been engaging in workshops and discussion around this topic. They have been related to kids in schools, the population that have some type of disability and for me personally. I had come to realize there was a certain group of people in my life that I was letting control me and my emotions. The one message that I heard loud and clear, no matter what the target audience, is you cannot let the bully win. You need to do whatever is appropriate for the situation to send a message to the bully that their behavior will not be tolerated.

In a school setting, that might mean going to a teacher. In our world of having a children with Ds , it means we need to be paying attention to clues that they may be facing a bully and step in for them. In my case, I needed to exit the harmful people from my everyday existence. I needed to stand up and say, "I will no longer allow this behavior to continue."

There are a lot of reasons why some people bully. They may see it as a way of being popular. They may think others will find them funny. They may like the feeling of being the tough guy, the one in charge. In most cases, it is believed that the person doing the bullying has some underlying issues that give them the need to seek out a person or group that they perceive to be less than they are. Often the bully has been bullied themselves.

Bullying is harmful because it can make the person feel lonely, unhappy and frightened. It can make them feel unsafe and think there is something wrong with them. It can erode at your self confidence and may make you want to retreat. And that is just what the bully wants to have happen.

The situation with the photos of our children is frightening. No doubt about it. What was more intolerable to me is when I read the letter sent out by NDSC that stated they believe the hacker was someone who had been invited by a family, who had a poster with their child on it, in the contest to vote. If that is the case, it truly is heartbreaking. To think that a family member would turn like that on their own flesh and blood, brings greater feelings of anger and rejection. I do believe that this person will be identified and outed for their cruel work. Hopefully, at that point some therapeutic intervention can take place to help this person with their own issues. They do need help.

In the meantime, we cannot run. We cannot hide. We cannot let one person, one who may have a legitimate mental illness causing this type of aggression, alter what we have built. If we all close down our blogs or go private, deactivate our facebook accounts, stop posting on message boards, stop permitting NDSC to use photos of our precious children, then the bully has won. Not only has he won, we have sent a message to all the families who have just been given a diagnosis that this is something horrible, something that we need to hide, always be in protection mode. That is not the message I want to send. I want to continue to allow our story to be told. Even if it is just one family that finds us and realizes they will be ok, it is worth it to me.

Note: If you are concerned about your photos, Bethany has written an excellent post about watermarking your photos.


stephanie said...

i agree Joyce! The only reason i started my blog was to share the joy Em brings to us. if I can reach one person who is in turmoil that their child has ds and show them what their life can be like, that would be awesome, but I can't do that if I go private. although I do understand the decision by some who were affected by the poster issue.It was scary. I'll protect her of course but what I want most is for people to how happy Emilia makes us.

Rochelle said...

Well said Joyce! I agree. We have to keep on educating the world. Obviously there are lots of people out there who need the education.

Chromosomally Enhanced said...

Thank you for the post! I am not sure how people can think our children are "good" targets...I am not sure what is missing in make them be so hurtful...thank you for your voice! smiles

Yo Mamma Mamma! said...

You got this EXACTLY right in my opinion!

Sumithra said...

Wonderful message from you Joyce.
I was shocked to read about what happened at NDSC site. When I saw photos on the NDSC site, I wanted to vote for every single one of them. They were all so beautiful. I can't understand what sort of a person could do something so horrible. I'm worried about the person with DS who might be living in the same house as this bully. I just hope and pray that the this horrible person hasn't caused him/her any harm. I just hope this person is found out and punished for his actions.

Adelaide Dupont said...

Merci, Madame Ely.

Ostracism and isolation are some of the bully's best tools. As is destroying the reputation of a person or a group.

Thank you for making the strong appeal to vulnerable feelings.

If I had heard and believed a message like yours 20 years ago when the person with Trisomy 21 was most in my life, I would have not become so prejudiced.

Runningmama said...

You are so right Joyce! Let's keep on bloggin'!

Tracy said...

I am so glad to read this. You are so right! I am going to stay out there in the blog world too, and if it reaches just one person who needs to hear that it having a child with Ds is okay, then it will have been worth it!

Emily said...

I have been VERY concerned since the horrific events have taken place... but I'd have to agree with you. I was not sure what to think or how to feel at first... but I am deeply proud of my angel and will continue to be his advocate!

Kristin said...

AMEN! I can take steps to protect my family, but I WILL NOT go private and let them win. Fellow bloggers' posts about things like open heart surgery and therapy sessions give so much support to those of us just starting out on this journey. I can't imagine having to go thru OHS without first reading about, and seeing picures of, others' experiences. We can't let them win!

Ruby's Mom said...

Joyce,Thank you.I needed this.

Loren Stow said...

Wow Joyce - you put in words what I've been thinking.
The online community was my life-line when Malakai was first diagnosed. Without it, I don't think I would have reached a place of acceptance and celebration so quickly.
I would hate to see this community splintered apart because of what a handful of deluded people do.
Well said - we need to stay put, be proud and show them that we are not scared, we will not stop telling our stories!