As parents we hope to raise our children well and when we pass away they will have all the skills and abilities they need to take care of themselves.  When you have children with developmental disabilities it is no different, but there is an even a greater force at work.  Parents of children with disabilities feel as though our death (however unavoidable) can never come.  We know with some certainty our loved ones won’t be able to manage in the world without the loving and watchful eye of someone caring for them.  We know the world may not always see their special gifts, their competencies and may treat them as “less”, because they are different.  The call is not just to prepare our children to take care of themselves; the call is to change the world.  We carry the mantle of that change like a heavy weight around our necks.  Because not only do we need to worry about preparing our children to live without us, we need to prepare our communities to embrace our children with all of their gifts and strengths.  We must leave the world a better, kinder and more accepting place where the individuals with disabilities are valued and cared for.  We have no choice, if we want to protect the children we love.  It is exhausting work born from the deepest kind of passion.  Many families came before us, slowly building better opportunities for people with disabilities. They worked hard at building caring networks of friends and family around their children.  They knew that community keeps us safe, not agencies, governments or programs.   We have come a long way from the institutions that we once had, but the road is still long.  Our children can have friends with disabilities and should have friends that share a similar story to them , they have much to learn from each other, but when our children are marginalized, mistreated or ignored, it will not be their equally marginalized friends that can stand up for them, it will be their loving network of friends and family that say you cannot treat them this way.  It will be their community that keeps them safe.

A man I admire very much, Al Etmanski, once described a situation that illustrates this point.  Imagine you are in a terrible car accident.  You can no longer speak for yourself.  Who will it be that will tell the doctors and nurses what you need?  Who will know your glances so well that they can tell when you are sad or in pain?  Would you trust a program or service to do that?  Or would you want the community of people who know and care about you to do that?    

It is with this in mind I have come to feel even more passionately that we address disability and inclusion more directly.  My sons is kind, loving, capable and Autistic, he attends his community school and is in an inclusive classroom placement.  He has friends that come to play at our home and that play with him at recess.  For less than an hour each day he is congregated with other kids with disabilities to eat his snack and lunch, so his Aides can have a break.  This seemed like a reasonable request given everything else we have managed to achieve.  This summer his friends were at the house and I asked why they thought Zach didn’t eat his recess snack with them.  The response shocked me, they said because he didn’t know how.  Now surely they must know better than that, they have eaten lunch with him in the classroom before and eaten supper at our home.  Yet in the absence of us directly explaining why Zach is not present in their classroom (so his aide can have her breaks), they have filled in the space with their own explanation.  It is a perfectly reasonable explanation.  Children are not aware of the decisions we make for reasons of money, staff, politics, and in the absence of us saying anything, they will make assessments for themselves.  I patiently answered trying to hold down my frustration, that in fact the reason he did not eat with them is the school did not have enough money to pay an aide to support him during that time.  The lesson I learned in that moment was invaluable.  The gift that is available here is perfectly simple and yet incredibly powerful, we have the power to shape how young children are forming their understanding of what citizenship is, and where people with disabilities fit into that.  We must provide all the information needed to insure that students are not filling that gap in understanding with misinformation.    

I work with an organization that supports people with developmental disabilities and their families to achieve full citizenship and participation in their communities.  So despite our tremendous progress I am always sad when we look for opportunities to engage in individuals in citizenship, and I hear “Is there not a program for people with disabilities.”  “Don’t agencies provide opportunities for those adults.”  Our individual responsibilities as citizens to encourage the participation and acknowledge the value of all citizens is underdeveloped.  There are two types of gifts we offer this world, the gifts of doing, and the gifts of being.  The contributions of doing have become so over valued that the citizens, that by their very presence teach us valuable lessons in kindness, patience and compassion, the gifts of being, seem to be in jeopardy.  I cannot help but wonder if the idea there are places for people with disabilities is not formed out of the experience that through our impressionable school years we saw people with disabilities go to special places.  Where does the sense of that “others” are responsible for “those citizens” come from?  It appears well developed by the time we leave school.

It has occurred to me the question is not “is segregated placement that right place academically for kids with disabilities?”  It very well might be , the truth is, to some degree it is secondary to the big picture.  I no longer care to have that discussion, what does it matter if my son can add and subtract, summarize a novel or run a science experiment, if his community does not believe his place is with them.  If they think there is somewhere separate for him to go, if they see him as less.  Secondary to my sons academic achievement is that he valued as a equal citizen in this world.  Will he be bullied less in a segregated placement?  Will his self esteem be higher?  Perhaps yes, but before that placement is made should we not ask what will happen when school is done. We are shaping young people to create the communities of tomorrow. If children bully those that they see as less and we remove those children with disabilities and put them in congregated placements, what have those students learned, through our actions.  If children with disabilities will have higher self esteems in segregated placements, what does that mean for our communities?  What are the long term consequences of what we have done.  Is there short term gain on to be followed by tragic long term loss.  

Ask yourself, for all your enlightenment, how many people with disabilities you go to a movie with or have a coffee with?  How many would you call friends?  How many people with disabilities do you hold in community with you?  Pope John Paul II said, “A society will be judged on the basis of how it treats its weakest members…“  Remember “you” are society.  Society is not a nameless faceless group, it is “me” and “you”.  So the question is how do I treat people with disabilities?  I can say I am nice, I have done no harm?  But truthfully, the real answer is, I say treat them nicely, because I do not treat them at all, and surely I therefore I have done nothing to hurt them.  But the opposite of nothing is not nice.  The opposite of nothing is something, and I suspect you have not done “something” to include people with disabilities in your life.  Is that really the best we can do? 

 How are we modeling the value of embracing all citizens with all of their strengths, passions and gifts if we are putting those most vulnerable to isolation and loneliness in “Special Places”, because that is where we think they will do better.  Why is it that there is such a strong sense that people with disabilities need “programs”?  I have met a lot of adults with disabilities; I have never met one who needs a program.  I have many that needed jobs, meaningful friendships, homes where they were respected and valued, important opportunities to contribute to their communities.  But not one of those things are found in a program, all of those things are made possible by community. 

So how does this end?  Truthfully I don’t know it does.  I have the responsibility to change the world on my shoulders.  So when you ask why I stand on my soap box and fight so hard to have my son included in an Art Class or Science Class, why the idea of a segregated placement is so hard for me to accept, you must understand I do it for our communities understanding of citizenship, for the world to see my son and all people with disabilities as equal, so this world will be a kinder more welcoming place and so one day I can rest in peace.