Now, before I start getting the flak for it, let me explain the meaning of “Inspirational Porn”. Inspirational porn means fabricating an ordinary deed or action as something extraordinary. Each child is special and there is nothing special in a disability.
The net is over filled with photos of children with Down syndrome with sappy captions. Giving them larger than life status, they are made into these amazing inspiring people that are born just to inspire others and not to live their life. The fact is that our kids are more normal than different and while parents don’t always make it an issue, some media campaigns portray these accomplishments as something, which becomes bigger than the child itself. The truth is our kids are normal, not some extra ordinary, super happy, always hugging people.
I understand that raising awareness is one of the key issues for most of us parents but the trouble starts when this goes too far and we start reinforcing the very stereotypes, we have been fighting. Don’t get me wrong! Our kids are special, but isn’t’t that true for every child?
My concern is that, just because you and I are the parents of children of Down syndrome; we don’t get entitled to be on a pedestal or called, An Inspiration! Which is what the Media is doing.
I can totally relate this situation with “the status of women in India”, while things have improved drastically in last few decades, but still female infanticide is a major problem in some states. For those who don’t know much about Hindu mythology, Deities have a huge role in Hindu culture and most of the festivals are not completed without worshiping the female God. Now, you might wonder how it is connected to this issue. It is! Here the women are either killed in the womb or are worshiped as a deity but not given the equal status. Similarly our kids with Down syndrome are being made into these super divine powers, just so they can justify their presence among the commons.
Also Down syndrome is not only about smiles and hugs. They are normal people too. They too show their tantrums, lie blatantly or are trouble makers. They are not perfect as claimed by most of these designer campaigns. Nobody is. Think about it, we don’t want our children to get special treatment, we want inclusion, not separation but these some blogs and pictures are turning them into these super humans that they are not.
More often than not, they are shown not for what they are but what emotions they can evoke in general population, mostly making them feel thankful that they are not one of those shown, but as parents we easily overlook this and let this hide behind the cute faces of our kids. I remember seeing this 25 year old girl with Down syndrome in one of those Indian Dance reality show where her mother said that she has been learning dance for last 15 years. I wanted to clap and was waiting for her to show the world what all our kids can do, But when she started dancing, I realized that she could barely move. I have no qualms in accepting that our kids can’t be totally in rhythm but all this girl did was made three basic moves in the entire song ( appropriate for a 4 year old reciting a poem). I have no issues with her not being able to dance, she did the best she could but then the worst part happened ! The judges gave a standing ovation. One of them was crying, hugging the girl. A motivational song playing in the background, She got into second round. My son asked why she is being sent to the second round when so many better dancers couldnt make it. I didn’t have an answer. Now I do, Inspirational Porn!
This might sound too harsh to some parents but let me explain my stand here and this might only be true in Indian context, I totally welcome the girl on a big dance platform but the boasting by the parents, did more harm by raising the expectations of parents like me and when we saw her dancing, we realized that the parents were living in some make belief world. I would’ve been happy if the girl could’ve performed even the 10% of what others did to get into the second round but with what she did and what she got was clearly the “sympathy” dancing and not the girl.
There was another incident which made me notice this again when I met this mother few days ago. Her son with Down syndrome is about 9 and is still learning to eat on his own. Now while this child is trying to eat and after not being able to do so, calling out for the mother, the mother and father are busy taking pictures, writing captions like “look! He is eating on his own” and uploading them on a social networking site. Agreed, She got immediate replies like “wonderful”, “you are so brave”!! But, now my question is that being a mother, I know this child needs training, attention and some physical therapies to be able to do all that he can, but the fact that his mother is strangely ok with him still not being able to do things which he easily can and treating him like a Godsent, not pushing him hard ( he comes into mild category of DS) made me question this whole attitude of being over comfortable with the disability and thinking whatever he achieves is good enough.
I understand that we all need appreciation and we like to show the achievements of our children within the community that truly encourages our kids’ accomplishments, and I do that too, but sometimes we forget to look at the bigger picture and tend to cross the line where we start creating an image for our child which might not necessarily be true and this process keeps adding up.
It is difficult to bring the change overnight and sometimes by creating these “Inspiring” images, we do more harm than good to our kids. for example, I read a quote once ” My child has more chromosome than yours”, now this is funny but aren’t we again doing what we expect the normal population to not do.
Another example is of a poster which said ” I provide the glimpse into the divine, connect you with the God”. The trouble with such Down syndrome pages or campaigns is that they are trying to show to the world that our children are a package of positivity, motivation, inspiration, love and affection, which they might not be. However there are some great campaigns too and we cant paint them all with one brush. So my only request from the parents and other family members is to be on the lookout for the media stories, blogs, pictures and posters which promotes the stereotypes.
Our kids are just kids and not somebody born to inspire. We need to stop creating and helping create images and captions which makes them anything more than a human. We need to treat them equally and stop giving or demanding special treatments. We want our kids to be accepted even if they don’t have super powers.
Love
Aarshia and Mama
