Monday, May 01, 2006

Blogging against Disablism!

Forward: Today, blogs all across the internet are posting stories about "disablism", which is discrimination against those with disabilities. I was moved to participate, and because I feel this issue is so important, I am posting it at the top of the page this week, above my usual introduction about Jenelle with the funny date in the future. Please click here to visit the website that organized this effort to check out other stories about this most important cause. And now, our story...


I will never forget the first time my daughter was discriminated against because of her disability. She was only 18 months old. I remember feeling stunned and shocked and in disbelief at such ignorance. But sadly, I also realized that this was just the beginning, and that she would have to face and overcome various forms of discrimination for the rest of her life.

Jenelle is 3 now, and officially remains “un-diagnosed.” When people ask “what’s wrong” with her, my first answer is “She has Epilepsy.” We say Epilepsy because most people have heard of Epilepsy. They think they know what Epilepsy is, but unless your life has been touched by it, few truly understand what it is and is not. After Epilepsy first came into our lives, I quickly learned that the name “Epilepsy” also brings out fear, stigma and ignorance.

We believe that Jenelle first started having seizures when she was approximately 6 months old. We aren’t really sure when they started because they can be so subtle in an infant. Upon confirmation of her seizures, we began seeing different neurologists and trying different medications in an effort to stop her seizures. When she was 18 months old, we spent the night at Mattel Children’s Hospital at UCLA while they tested to see if Jenelle was a candidate for brain surgery. Sadly, she was not and we were given the news we feared most – Jenelle had Lennox Gastaut Syndrome, a rare and devastating form of Epilepsy. We were told to expect a difficult battle in controlling her seizures, that she would be severely mental retarded, and that it was possible that one seizure could kill her (SUDEP - Sudden Unexplained Death in Epilepsy). We were told she may have a short life, and that she may not live past age 5 if we could not get the seizures under control. The news was devastating.

At the time, Jenelle was enrolled in a school for the blind, as she also suffers from cortical blindness. I have always been quite open in discussing all of Jenelle’s medical problems with anyone who will listen (this blog is a perfect example of that!) The main reason for this is that her “undiagnosed” condition is so rare; it may not even be a diagnosis yet. Also, I sincerely hope that her story brings inspiration to other families that have a child similar to Jenelle. So upon returning Jenelle to school, I gave her teacher all of the “gory” details of her “new” diagnosis. This was my biggest mistake.

The next day when I was dropping off Jenelle at school, I was met in the parking lot by the school administrative director. The school board had decided that Jenelle’s condition was too severe, and that she could no longer come to school. I was shocked and at the same time felt as if the wind had been taken out of my lungs. This school catered specifically to students with disabilities, and Jenelle was not their first child with Epilepsy. Yet, as I later learned, the fear about seizures, and the possibility that Jenelle could die from one was the main reason she was immediately pulled from the school. What shocked me most was their ignorance, in spite of their catering to disabled children. Jenelle was no different the day after her visit to UCLA, than she was the day before. And sadly I realized that this “disability” would always work against her for the rest of her life.

Seizures are not pleasant to watch. They are sometimes loud, violent and are always frightening. If a seizure goes too long, it is a medical emergency. Not many people know what to do when someone has a seizure. Because of this, the word “Epilepsy” carries with it a huge stigma, and lot of misconceptions. When I first heard the word Epilepsy, I was immediately relieved because I ignorantly thought it could be easily treated with medication. Obviously, in the last three years I’ve learned more than ever imagined and I witness first hand at how devastating Epilepsy can be.

It was not too long ago that people with disabilities were treated poorly. I’m not saying that they way they are treated today is any better, but it was so much worse just a few short years ago. Patients with mental incapacities were often sterilized by the government, children confined to wheelchairs were kept in separate class rooms, students with learning disabilities were labeled as simply being “slow”, and Epileptics were labeled as having “fits” not seizures. I won’t even begin to describe the abusive language associated with disabilities. You know the names; you know the hurtful things people can say. We’ve come a long way, but we have so much farther to go.

When I see programs in schools like “full inclusion”, I realize that it is a step in the right direction. Children in school now have more exposure to children who are “different” than I ever had growing up. However, I realize “full inclusion” is not for every child with a disability, especially my Jenelle. Is it too much to ask that society treat her differently because of her disability, but that they accept her equally because of it as well?

After our first taste of discrimination, when my disabled daughter was removed from school because of her disability, I realized the harsh truth that life would be difficult for her. Six weeks later, after battling the school board, and threatening legal action – Jenelle was allowed to return to a modified school schedule. They refused to keep her in after school daycare because the care giver was not comfortable with her. I still resent their actions, mainly because it came from the very place I least expected to find it. But perhaps I needed that rude awakening, so that I could be a stronger advocate for my Jenelle.

As eloquently stated by Lady Bracknell in her “One in Seven” piece; disabilities affect all ages, all races, all religions and all political views. And sadly, those with disables are the most repressed minority in the entire world. This country fought to free our black slaves, for women’s rights and today for gays and lesbians. Why do we continue to overlook the disabled?

I hope that our story helps you realize that even the smallest and youngest one with a disability can be discriminated against. We need to open our minds and our hearts, and we need to make life better for everyone, even those who appear to be a little different.


Anonymous said...

Well, our similarities are even more eerie than you mentioned on Emergiblog. My mom and sister have epilepsy - their seizures were less dramatic "absence" type seizures.

Jenelle is beautiful - I'm looking at her photo on the post below as I going on to read more of your posts.

Anonymous said...

Hey Kelly,

This is a beautiful post and unfortunately one I can relate all too well to. (((hugs))) to you both and the rest of the family.

By the way, did you know that there is a link to this post on the BBC's disability website? It's at