I am a believer that people want to be around positive people. I strive to be that most of the time. I find myself the “everything is fine” type of person. You know those kind? The ones that say, everything is fine! I am fine! Kids are fine! Life is fine fine fine and most of the time great! Yep I am one of those, and most of the time that is the truth. I wonder through my day feeling fine, trying to light my creative fires along with keeping up with my 6 children.
I spend most days happy. I try not to spend too much time thinking about all the obstacles my children have to over come. I instead live in my own little world that sensory issues will be over come, food allergies are a fact of life and Down Syndrome is no big deal. In my world no one notices these characteristics about my children. They are just kids moving through life like everyone else.
Sometimes I get so caught up in my own world that when someone does make a comment about my children I am blindsided. I often have to get my breath back and I am reminded that even though I live in this world it is just not realistic. It is not the real world and the worry begins. We all have worries and they are real worries about our kids. Will they have friends? Will they graduate and get into college? Will they get a job and be able to live on their own? I desperately want this for all my children and in my world all these things will happen. I choose to believe in every single one of them.
I sometimes wonder what it takes to really foster true integration, you know acceptance for everyone. What does it take? I am a mom who happens to have children with different disabilities so I am entrenched in the day to day advocacy of so many different types of advocacy groups. The groups, foundations and associations are all cheering from the sidelines. They are all spreading awareness and begging for acceptance for their members. Are people hearing them? Are people listening? I am interested in knowing, because I read story after story of people not listening. People not integrating and others just plain not accepting.
I know a beautiful young girl who walks with a walker. She gets around beautifully and she maintains an extremely positive and hip attitude about life. As she is standing in line for her communion practice she and her Mom have to listen to a 2nd grader say numerous times how unlucky she is because she can’t walk as well as he does. I know another sweet 1 year old girl who has endured more surgeries in her life time then I have in 30 years. Her Mama stands on edge at the park because of situations where children have been less then accepting toward her and her precious girl.
Today I visited a Mama, a Mama I have tons of respect for. You know the type, super smart and on top of things. She is a go getter in my eyes. She went to interview a preschool for her 3 year old daughter with not only her daughter in mind but her son as well. He happens to have an extra chromosome. As she inquired about whether this preschool would take children with Down Syndrome the director responded with a scrunched up face. She explained how they prefer not to because they (Down Syndrome children) are so low functioning. Then she proceeded to tell her how they had one 4 years ago but don’t plan on taking those type of children in the future. This Mama sat there listening as she was fighting back tears.
All on the day after I read this beautiful blog post from another smart Mama.
I tell you these stories because I don’t get it, I don’t understand. These stories come from people I know personally. I could write pages about stories from families I know virtually. I really feel like the media could change perceptions and that is why “Changing the Face of Beauty” is so very important to me, but I wonder. What makes the impact. What teaches men, women, children, families and organizations that are not familiar with individuals with disabilities. How can we get them to hear our message? I feel like we are all teaching each other and the funny thing is we already know. Is anyone else listening?
So tonight I am mad, angry and I want answers. I do not have tolerance anymore for people thinking they are better, more worthy of successes.
So I am asking what do YOU think makes an impact? What steps do we need to make to encourage acceptance in the “real world”? How do we teach parents to preach acceptance and live it out. How do we explain to companies that we are people too. We buy their products and the disability community matters. I wanna know because I am at a loss. I just don’t get it. My children changed perceptions for me and I know that not everyone is lucky enough to have that opportunity. We want to advocate well and we all want change. How do we make it happen?