I have several workshops I do about inclusion. I have done them in a variety of settings. A couple of years ago I decided I was going to add a new opening. It goes something like this:
“This workshop is Inclusion Doesn’t Have to be Somewhere Over the Rainbow. If you have come here looking for something easy or a magic pill, you should go ahead and go down the hall to a different workshop because that doesn’t exist. Inclusion is hard work.”
My impetus for this opening occurred after reading evaluations on a speaker. A group I was involved in hosted a behavior consultant. I had heard her before and she did her usual great job. Her evaluations were consistently in the highest range with one exception. One of the evaluations was low across the board. I began reading the comments and finally it said, “I came here looking for a magic carpet answer to my child’s behavior problems, and I didn’t get it.” I would say that person has unrealistic expectations.
Sometimes I get the same kind of feedback from my blog and presentations. I try to take a positive but honest tone. Most of my readers don’t know what goes on behind the scenes to make inclusion work. I’m not trying to scare anyone, but it is hard work. Should it be so hard? No and if we lived a perfect world, it wouldn’t be so hard. But we don’t and it is.
At the beginning of this school year, I was meeting with one of Rachel’s teachers. I was showing the teacher the flash card system we use to help Rachel with her classes. The teacher looked at me very intently and said, “Do you do all of these flash cards and all of this prep?” I responded that for the most part yes I did. The teacher responded, “But that is not your job.” My response was that it may not be, but I will do whatever I need to do to help Rachel be successful and if not me then who? In my selfish way, it actually made me feel validated that someone noticed. There are days when this journey can be exhausting.
There are a lot of hard things in life though. Don’t misunderstand my intent. I’m not condoning this reality of non-inclusion and non-acceptance. There are still so many systems, attitudes, perceptions and even laws that need to change. IDEA (Individuals with Disabilities Education Act) was passed in 1975. Sometime this year I might have reminded a few people of that and questioned why we were even discussing Rachel’s inclusion and accommodations in certain settings. In theory, it shouldn’t even be a question.
The lack of meaningful inclusion extends past the education setting though. Beyond the walls of school the first place many parents of children with disabilities are directed is to segregated choirs, sports and church activities. Many of you would join me in sharing stories of the hurts and challenges of mainstream community activities and church. It would be easier to go another route. So if you are looking for easy, there is probably an easier path. However, I haven’t found a magic pill or magic carpet yet.
I believe in honesty and want you to know when you choose this road less traveled that it won’t be easy. I try to focus more on what is working for us and share that with the hope that it will give someone else an idea, open the eyes of someone to the abilities of a person with Down syndrome, change a teacher, or give a parent who is weary and exhausted hope. I have seen this happen and inspires me to keep on sharing. Jonathan and I believe that Rachel and others with Down syndrome and other intellectual disabilities have a God-ordained right to be treated with dignity and respect. By virtue of being born in the United States of America they should also have the same rights as all others protected by our constitution and should be treated with respect and dignity. We do not believe the Bible or the constitution say this applies to everyone except. We believe Rachel and other individuals with these disability labels should have the opportunity to live real lives pursuing their hopes and dreams like their friends and families and alongside their families and friends. We do this for Rachel and for those who can’t, won’t or don’t do it. It is hard, but we think it is worth it. I think Rachel is happy that we think it is worth it. Actually a better way to phrase that might be that we think she is worth it.
And guess what? No one has ever left and gone to another workshop.
This popped on my timeline yesterday and I believe it is worth a re-post! Originally printed October 2014.