Thursday, February 23, 2012

Discriminating against ourselves

Discrimination is ugly. Sometimes discrimination is obvious, purposeful and evil and sometimes discrimination is accidental. My daughter has been the victim of both.

The discrimination that hurts my heart the most is what I am going to call disability on disability discrimination. I bet you’re wondering what that is. In the world of disability only the kids that are at the very top are celebrated. If you look at the National Down syndrome sites, their sites are full of stories that shine lights on kids and adults that are on tv, go to college, exceed in dance classes, write their own books, own their own businesses but kids that for the first time ever was able to walk through the store without having a fit? No, not the kind of spectacular story they are interested in.

Then there’s the “one up club”, this is the most insane “club” you will ever meet. It consists of parents who are constantly looking to one up you, constantly pushing their kid’s achievements down your throat. Oh little sally is in the 4th grade, she’s fully included and doing 5th grade work! Pumpkin is 4 years old and already knows how to balance the family checkbook. I used to drive myself totally crazy wondering what the hell I was doing wrong that my child couldn’t be among typically developing peers in her age group and do the same work they are doing, talk the way they are talking, in short how had these children with developmental delays morphed into typically developing children and mine couldn’t? I looked for pills, potions and scoured Google, I found no magic pill. The truth is that their parents were lying, or rather stretching the truth. Not sure if they meant to or not but by trying to boost their own child, they discriminated against mine. They were saying “our kids may both have the same extra chromosome but clearly, my kid is better than yours”. Was this on purpose? I would like to think NO but I there’s a part of me that says it is.

Let me tell you, fully included does not mean that the kid is doing the same grade work as their peers, fully included often doesn’t even mean that the kids are in the same class all day. The words “fully included” lead you to conjure up images that can make you wonder what you are doing wrong. These kids often go to a resource room for 1:1 help OR they have 1:1 aides in the class OR they are doing 2nd grade work in 8th grade. Don’t allow the words “fully included” scare you into thinking that every other kid is on par with grade level and yours isn’t.

So, then we turn to the Autism world, surely this is more the “home” we’ve been looking for, but, most of the activities are for kids with mild delays or Asperger’s syndrome. UGH same deal , different diagnosis.

My child is nonverbal, this leads to her being harshly judged by everyone, this has lead to behaviors that have alienated us because people look at my kid and think “oh my, she’s not fit for our company” I have actually had friends bless their life after looking at how she has behaved and her behavior is directly related to her being nonverbal because she is smart, but she gets frustrated by a lack of communication. Try it someday, go through the whole day without talking OH and her fine motor skills are awful so she can’t write SO no writing to get your point across, TRY IT, I promise you, you will have a whole new respect for people that have to communicate without the spoken or written word.

It has taken me a long time to understand that I need to get all those people out of my head; they are the ones that can’t see the beauty in my daughter’s achievements. What comes so easily for most children can be years in the making for my girl but, then, you turn around and with the help of technology there she is putting a sentence together “I want to watch tv, I want to watch Barney” and in your entire life you have never been so happy, so grateful so completely in awe. You learn quite quickly not to take the world for granted.


  1. This is awesome! Sharing it on my fb wall. Every child deserves to be accepted and celebrated regardless of accomplishments. I realized this after I spoke to a lady who felt children with Ds were a strain on society and better off aborted. I started telling her all of the wonderful accomplishments of Morgan and then realized her life did not have value only because of her accomplishments. Her life has value. Period. Whether she is ‘high functioning’ or ‘low functioning’. Every life has value.

  2. *standing ovation* Bravo! This reminds me of the message in the documentary Teachings of Jon. Every life should be celebrated for all accomplishments. Well done.

  3. I'm glad you both enjoyed reading this, thank you.

  4. Beautifully written! Very great point. I just had a mother tell me her child with DS will be less of a strain on the US economy than my son will be due to the difference in our household earnings, since he will never need public assistance. That is harsh. Is that then be pre-descrimination waiting to be doled out in the distant future against one of our own? Wow.

  5. Thank you for this. I read on blogs about other people's kids with Down syndrome who are the same age as my son who has Down syndrome, and at three years old, their kid knows their ABCs, all their colors, and is sight reading??? I ask myself, is this true? What am I doing wrong? My TYPICAL three-year old didn't do any of those things! Are they lying? I think comparing our kids to other people's kids - typical or atypical - is a dangerous trap to fall into, but so sadly easy to do. Really appreciate your post. I need to get these people out of my head and focus on my own son and my own family. And truly, I am usually pretty reticent on my own blog about talking about my son's achievements because I don't want his value to be judged based on what he can do.

  6. Thank you so much for posting this! I appreciate your point of view and your honesty. We recently moved to Colorado and our daughter is "fully included" in a kindergarten class. She has full-time para support that enables her to be there. I am happy that she is with other kids that are her age, however I am very aware that she is not doing the same work as they are. And as she gets older the gap will widen and we will have to re-evaluate her placement based on her needs, not on her rights. I think that is key, but it is just my opinion.

    We are proud of her little girl and her accomplishments. When I read blogs and Facebook posts of people her age doing things such as "balancing the family checkbook", I also have to wonder what the real story is.

    Thanks for the reminder to never compare either of my girls to anyone else, and to celebrate the "little things", because sometimes, to us, they are the huge things!

  7. I hear you... But I would never call it disability on disability discrimination. I'd call it "high functioning discrimination" or something along those lines. What you are talking about is something that I - a deaf disability rights activist - have only seen since I joined the Ds community, which of course is full of parents who don't have disabilities. It's awful.

  8. Have you read the book "Mommy I wish I could tell you what they did to me at school today." By Rick Stripp, Sr. ? It is a very eye opening dipiction of what goes on in schools for non-verbal children. Thank you for your post, will share.

  9. Thank you everyone. I am going to read that book.

  10. My heart goes out to you and your little girl.

    Yes, I too have had the "my kid is better than yours" type mentality and as an adult with autism, I often get told "Oh but you look just fine. Just stop blurting out things like that." (when I am honest and people don't like what they hear) or: "You're using autism as an excuse." (when I apologise for something I've said without thinking and have tried to explain why it happens) or better yet: "Try a bit harder." "If you just tried you could behave like everyone else." etc ...

    If I try any harder to fit in, I'll explode from the stress...

    Besides, if "trying harder to behave like everyone else" means telling lies, or witholding the truth, or gossiping behind people's backs, then maybe I don't want to be like everyone else.

    Oops, I also talk too much! Including typing too much...