17 August 2014

Jenny's Post....

My friend Jenny writes a blog that is wonderful and amazing. She recently wrote this post and I asked if I could share it with all of you. Made me think....
I still added pictures of the girls :)

 This whole "inspiration porn" thing has been bothering me lately. When Russell was born I needed to see the positives in raising a child with Down syndrome. I needed to see happiness...I needed to see kindness. And back then in Russell's first year, my FB feed was full of people passing around "feel good" stories. Stories that left you with a warm feeling and a big smile on your face. Stories that made you a little less scared of your child's future...Stories that gave you a little hope.

And then there was a shift. Then the term "inspiration porn" came out and everyone shyed away from sharing anything that might be even remotely nice, or kind, or "too inspirational". Because you know, that is damaging to our kids and all. Those feel good stories cause more harm than good. We don't want people to show extra kindness to our kids because that takes away their dignity. Ug...*sigh*....Sorry, I'm being a little snarky here, I can't help it.

It's just now days all I see are those horrible, gut wrenching, awful stories being passed around. Children with Ds being abandoned, aborted, mistreated....And I guess I am stumped really as to why everyone is so damn quick to share these stories and not the ones that are...well, nice? I guess I don't understand why it is better to show stories of people abandoning children like ours instead of showing people being "overly" kind to them. My FB feed use to be full of positive inspirational stories...Now it's all pretty much filled with anything shocking or negative. It sucks.

So, an article
 is floating around the Internet. And the whole shady surrogacy thing aside, this article really broke my heart. It's just so sad to know that many people in this world still view Down syndrome as something to be scared of. Ashamed of. That some people would think a child with Ds is not worthy of love. Something they wouldn't want to "take on", so to speak.
It got me thinking...It got me thinking about what changes a persons perception of what Down syndrome really is? What helps people to see that it is not something to be feared? That those living with Down syndrome do not lead horrible, wretched lives...That it is not the awful existence they think it is.

Anyone who reads this blog knows that I am not against inspiration porn...I think it plays a role. I think it is still needed to help push change forward. I don't think there are enough good stories out there. I don't think we are anywhere close enough as a society to do away with it altogether...yet.
If we are still hearing stories like this in the media...If we are still hearing about people abandoning children with Ds...Letting them rot away in Institutions...If the abortion rate for babies with Ds is still as high as it is...Then how can we possibly say we need to get rid of inspiration porn? How can we say that we no longer need it? That it does more harm than good? 

Doesn't all this scream that there is not enough good stories and experiences out there being shared? Doesn't this scream that people still don't know enough, that they are not educated enough to not fear Down syndrome? Doesn't this tell us that there have not been enough "feel good" stories out there for people to view Down syndrome in a positive light?
So inspiration porn...What is it that actually bothers people? I think for many parents it's that they don't want their child being treated "special"...They don't want people being kind to their kid out of pity. They want their children respected and treated as equals. But that doesn't mean that all inspiration porn is bad...That all acts of kindness are really just pity and taking away a persons dignity. Sometimes kindness is just that, kindness.

I hear people bitch about the cute pictures with inspirational quotes attached to them being passed around. How we shouldn't waste time on stuff like that...You know,  because sharing pictures of cute kids with Ds doesn't bring about real change. My response to that is...

Um, so? Why does every one have to be only worried about making real change? What about those new parents? What about them? They're still scared to death. They still don't know what to expect. They aren't anywhere near ready to tackle real change like the ABLE Act or Sheltered Work shops, or anything like that. They are taking baby steps into this new world...They need to see those cute pictures and inspirational quotes. Who are you to say they have to jump in head first into all this advocacy and disability rights movements? Just because you are there...Just because you are ready to fight for change does not mean everyone else is at the same point in their journey as you. And you don't get to tell people how soon they need to get to that point, or how to get there. You don't get to deny them those baby steps. So those cute pictures of kids with Ds...Don't like them? Don't look at them! But they still play a small role in creating change and shifting peoples perceptions, so they are of some use, they do some good, some people need them. So if you need an issue to complain about, find something more important than this to focus your energy on, cause in the end it just isn't that big of an effing deal.

Those inspirational stories in the media where it is also mentions the person has Ds. I know some parents have a problem with this. I hear the grumbling of "Why do they even have to mention he has Ds"...Why? Because some people out there still aren't as educated as you are, that's why. Some people are not aware of what people with Ds are even capable of.

I shared a story of a man with Ds running a Marathon once. He was the first person with Ds to complete that Marathon...Instead of celebrating, I heard many in the Ds community grumbling over the fact that Ds was even mentioned. They didn't think this man should be singled out for running this marathon because you know, he only did what all the other runners did, what's so special about that?

What's so special about that?

Russell is almost five and he is not a good runner. His movements are still abrupt and choppy and all out of sync. It makes for the cutest little run you have ever seen. But it's difficult for him.
And there have been times it made me a little sad. Sad to see kids younger than him move their bodies with so much more ease and effortlessness than Russell. So if one day he runs a damn Marathon and the news paper also wants to add the fact that he has Down syndrome. Fine by me! Because Ds made it more difficult for him to accomplish it. Because his body was something he worked to overcome...And I know many parents have a problem with what I just said about Russell "overcoming" his body. But how else do you word it? The struggle to fight past the fact that your body does not function as smoothly as others? Isn't that overcoming? And what's really wrong with that?

Anyway, onto more inspiration porn...

Homecoming. Every year I see parents get all bent out of shape when they see someone with Ds has been nominated homecoming king or queen or whatever. And I always wonder why such a fuss? To me when I see people get outraged at this type of thing I think they are sending a pretty powerful message. A negative one. They are saying to the world...No way this kid got nominated simply because people like him. No way can anyone else see how awesome he is, this is all out of pity. This is only to make them feel good about themselves....

Well, I can tell you this. Here in Canada we don't have that homecoming nonsense. But if we did, and if Russell was nominated, the last thing I would think was it was out of pity. I would think he was nominated because people thought he was a great guy. That he earned it. That he had made a positive impact on people and they wanted to recognize him. And ya, maybe Ds would play a little role in that, and so what if it did?! Maybe his peers, the ones he grew up with...The ones he went to school with since Kindergarten, would want to recognize how awesome Russell is. How much harder he has to work for things that come naturally to them. What a positive attitude he had. I guess I just feel like when we bitch and whine about these stories and how they are just inspiration porn,  we are really telling the world that our kids would never be worthy of such an honor because they have Ds...And that to recognize them in such a fashion is just fake and terrible and all out of pity because no one can possibly see our kid for who they are. And that it's wrong to single them out...To admire them...To feel inspired by them.
People can't really win though can they? If people with Ds were never nominated or given that honor, the Ds community would be all outraged over it. And then when kids are nominated the Ds community is still outraged over it. What a confusing message to send to people!

About those sports stories. 

You know where the kid gets passed the ball in the last few minutes of the game? You see a crowd full of people cheering, people in tears. Well, this is a personal story. It is about that community...That child, and that child's parents. If you are not the type of parent who wants your child on the team because he didn't earn the spot or isn't good enough and you feel it is all out of pity...That's fine. But you don't get to call the shots for other parents. If a parent knows full well their child is only on the team because he is being "allowed" because people are being nice...If they know he is mostly benched, but that child loves the feel of being a part of that team...Well that is their business, not anyone else's. You don't get to tell other parents how to raise their children. If allowing a child with a disability to be on that team is what the child wants, what the parents feel good about, what the team embraces...Then so be it. Why put a negative spin on it?

And here is something else people need to keep in mind. All our children may have Ds...But all our children are different. They are all capable of different things. Ok, I hate that I am wording it this way but I don't know how else to put it. I'm going to use the "functioning" word.

A parent with a "higher functioning" child may have different expectations for that child. They may not want their child treated special because they know their child is fully capable of doing things everyone else is. But what about the children on the other end of the spectrum? What about the ones who are not talking, reading, writing...The ones who struggle way more? Why is showing them extra kindness so horrible? Yes, as parents we all hold high expectations for our children...We all work with our children to help them reach their potential. But the bottom line is, no matter how much work or therapy you do with them, some kids are simply not going to be capable of achieving the same things as others. And that's ok, that's just the way it is. It doesn't make any one more important or more valued than another. But it makes it so that what may not be ok with some parents with how their children are treated...May be welcomed and appreciated by other parents.

And this all kind of ties into the next topic...


About the child playing the last few minutes of the game, or being passed the ball?  Ya, um so what. *gasp* Oh the horror of it all, a bunch of kids finding a bit of heart and wanting to make some one feel good or have an awesome moment. This is sooo terrible and awful. I can't imagine anything worse! How degrading and dehumanizing. Ug...Really?

The thing is what you never fail to see in these stories is people being moved emotionally. You often see the crowd going crazy, clapping, smiling, maybe brushing a tear or two away. Because they are touched by the whole thing. And who is to say the community watching something like this cannot feel that way? Who is to say it is so awful and wrong? Again, I feel this is a personal story to those people who are actually there and involved.

Maybe this community has watched this boy grow up. Maybe a lot of people in this community had a hand in raising him. Maybe in that stand full of people "pitying" this child, there are therapists who helped teach this boy to walk, or toss a ball...Perhaps there are teachers who helped this boy learn to read and write...Perhaps there are store clerks who have had daily conversations with this boy and have watched him grow from an infant. Perhaps there are bus drivers who personally cared for the child and made sure he got on and off that bus safely everyday for years. Perhaps there are babysitters who love that boy. Perhaps there are Nurses or Doctors who in the beginning didn't think that boy would even walk or talk....Maybe there are people in that crowd who genuinely love and care for this child. Who have watched him learn and grow...Who have been touched by all he has overcome, all he has worked for...Maybe this boy has made a difference in all their lives...And they want him to have this moment. And who is anyone to tell them that this is wrong. That this is damaging. Some may see this example as a community using this child as their feel good mascot...While others may see it as a community coming together and celebrating and embracing this child. Whose to say which is the right way to look at this situation? It's a personal story.

What I described above is what I want for Russell. I would much rather have him embraced and loved by his community than ignored...I would rather him be surround by a bunch of teenagers who would want to be kind to him, than not. Not every form of kindness and compassion is out of pity. In many ways it is simply a celebration. That's how I choose to see it anyway. I choose to not be horrified by people being overly kind to my kid.

So why do I feel that these stories are still important? Because when Russell was born I was completely devastated. I thought of his life being absolutely miserable. I thought of him being taunted and made fun of and being treated cruelly. If I had seen a news clip of a boy being passed a ball by teammates that cared about him and were inspired by him...If I had seen a crowd jump to their feet and cheer him on...I would have been less scared. To see a news clip of a boy with Down syndrome being embraced and supported and valued by all those around him, even if they were all being *gasp* overly nice...Well, it would have given me hope and made me feel like everything was going to be ok.

There is a need for all  types of stories. There is a need to share more good. I guess I just wish people would get over that "inspiration porn" term and go back to not being afraid to share some of the good out there in this world. I wish I saw more people sharing stories that left a smile on your face instead of the ones that make a person want to throw up and hide their child away from the world to keep them safe. I just don't think inspiration porn is as damaging as people think it is.

So that's my opinion. Like I said I know some disagree with this way of thinking, and that's ok. We each need to raise our children how we think is right...And there is no one way, no "right" way. We all love our kids and want the best for them...What may feel right to one parent, may not to another. So if you don't like inspiration porn, skip past it...And if you do like it, don't be afraid to share it.










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