Yesterday my dear friend and director of the Down Syndrome Guild of Greater Kansas City, Amy Allison, sent me an email that simply said in the subject line “Your next blog post topic!” The text read, “Love this” with a link to We Expect Respect. I read Terri Mauro’s “We Expect Respect” and joined in this particular conversation about respecting individuals with disabilities and their families. I’ve been on a soapbox about this for about twelve years now. Yes, that coincides with the birth of my daughter Rachel who has Down syndrome. This morning I awoke to find this facebook post The Bitter Truth. So I expect God is giving me a shove to write about this very subject today.
We have come a long way you might say. This is true but a great deal of this long road had to be legislated. One example – in 1975 parents of children with disabilities celebrated the passage of IDEA (Individuals with Disabilities with Education Act). Before that time, children with disabilities such as Down syndrome were turned away from public schools because the public school system, paid for by o ur tax dollars, did not have to educate children with special needs. Tragic – that in the United States of America where “We the people” are granted our freedoms under the constitution, more than just one someone thought it was okay to “not” educate thos e with disabilities. Years of fighting, advocating and working resulted in this landmark legislation. However, legislating morality is tough. Yes, I chose that intentionally because this is a matter of morality. If we as a people had done the right thing to begin with, there wouldn’t be a law to make you include those with disabilities in public education. That was just 36 years ago. In my opinion, the law is ambiguous. It inherently promotes a spirit of “us” against “them” but I go back to my primary premise regarding IDEA: We should not have had to legislate educating students with disabilities. What does that say about treating all people with respect and dignity? I will not hop on my soap box about how this law is not being followed or funded or rejection of those with disabilities by private schools because that is not today’s topic. As Timothy Shriver said in “The Bitter Truth ” changing laws and rules is necessary but not sufficient.”
My focus today is changing hearts and attitudes in order to grant dignitiy and respect to individuals with intellectual disabilities. Those of us with children with disabilities should not have to worry that our child will be turned away at the preschool soccer program or Vacatin Bible School. We should not have an anxiety attack about asking for something for our child at school because we are afraid they may retaliate against our child and we can’t be there every minute to intervene. We shouldn’t cry on our bunk at church camp because our child was not included with the other children in their talent act and not a single adult intervened. The other day I was at the pool and a little boy was having a fit. No other description is apt. He was having a fit! I really didn’t think much of it because that’s just kids and sometimes that happens. His grandma looked at us and said, “He isn’t just misbehaving. He has autism.” I told her it was okay – no worries, but I wish she hadn’t felt like she had to explain. I’m sure more than one person has dressed her down.
We shouldn’t have to worry that we might not be able to vote. My good friend went to vote. Her son has autism. The line was long. Her son started some of his acting out. Her husband is in the military. She has no family where she lives. Not just everyone can manage her son so she took him along. She just wanted to vote. A man began to berate her parenting skills and told her she needed to learn how to handle her child. He told her to get out of line. She began to tell him about her son when a kind soul said, “why don’t you go ahead of me?” I’m not sure if they kind soul just wanted her to get done or if she respected the situation.
We shouldn’t have to worry that we are saving over $2,000 in assets for our loved one with a disability because if they exceed this, they may not have medical insurance. We shouldn’t have to worry that after years of following IEP goals at school, our child may not get a diploma. They may get a certificate of attendance and then they won’t be able to access certain jobs or post-secondary training because they didn’t graduate. These are just a very few examples of the things that show the lack of respect for the dignity of those with disabilities. In my opinion some of this also shows a simply lack of common sense, too.
A few years ago I was the director of the Down Syndrome Association of Memphis and the Mid-South. The prenatal testing for Down syndrome dilemma was raging because of new guidelines set forth by the American College of Gynecology and Obstetrics and advances in the ability to test for Down syndrome earlier in a pregnancy. A reporter called me and wanted to chat about it. I didn’t tell her that I had a prenatal diagnosis, and I told her that my comments would not be personal opinions but rather our organization’s stance. Eventually she said, “Isn’t the real reason parents of children with Down syndrome may be opposed to this testing is that if there are less people with Down syndrome, then there won’t be money for services?” I took a deep breath and responded that money is always a concern but that the real reason we were concerned about the way this new testing was being presented was that there were some people who believe the world is a better place because there are people with Down syndrome in it. She said, “Don’t you think that is a little dramatic? You make it sound like people with Down syndrome could be eradicated?” My response was, “Do you remember Hitler and the Holocaust?” I didn’t need to say anything else. She said “good point.” We shouldn’t have to justify the value of the life of a person with Down syndrome based on dollars and cents.
You say but how do I help? You help by signing the “We Expect Respect Manifesto”. You support someone with a disability by attending and participating in a fundraiser or awareness event such as Step up for Down Syndrome or the Buddy Walk for Down Syndrome Awareness. You request that your child be in the classroom with a child with a disability. You invite the teenager with a disability to your child’s birthday celebration and help learn how you can give support so the teen can participate. You stop watching shows and comediennes who use the R-word or who use those with intellectual disabilities as punching bags. You take the pledge to Spread the Word to End the R-word. Get to know someone with a disability.
In her 12 years, Rachel has affected more change in people’s attitudes than I ever will. Be a Rachel. Be part of the solution. When I speak to the children at school, I tell them it is not enough to feel bad if someone is bullying someone. You are as guilty as they are if you do not act. Won’t you act?
