INCLUSION, the forever challenge

I don't know how to track back, so if you're really motivated, you can read the post of a lovely young woman, who I think the world of, who is currently a cast member of A Chorus Line, coming soon to Philadelphia.

http://thislifeinwriting.blogspot.com/2008/12/audienceparticipation.html


This was my comment to her post:

As a mother of two autistic kids, you can imagine I have some pretty strong feelings about this. I apologize in advance for the mega long comment, feel free to delete me. So fortunate for me that my kids are high functioning enough to be able to participate in most age appropriate activities without much incident, but I have certainly met plenty of parents who travel in the same circles who aren't as lucky. And I still have to take care of a lot of details that people without special needs kids can't understand in regards to social events. Solutions are really tough.

For one, we definitely need to be better as a society when it comes to inclusion for all of our members who have special challenges, the elderly and physically challenged are very often left out in this way also. Less than forty years ago, there were no public schools for children with special needs, and yet all of us pay taxes into the system. We are definitely talking about institutionalized discrimination, this attitude for sure bleeds over into the private sector.

But the experiences need to be tailored to the individual as well. Just as you would probably not take a newborn baby or a toddler to a swanky restaurant, I would not put my boys in the position of being somewhere that they couldn't appreciate or are unlikely to behave appropriately. You should definitely consider the needs of the performers or the other patrons. For instance, we all love the library, but it is only considerate to be relatively quiet there. My kids are over stimulated by the presence of too many other people, so I go out of my way to take them when I know traffic is going to be lower, and we patronize specifically libraries that cater to children. The problem for us is finding those kind of resources in other kinds of social environments.

In the specific case you were describing, no one on the outside can really judge whether or not this young man was able to truly appreciate your show, but I'm willing to bet the people around him drew an unfavorable conclusion. Few people take the time to learn about special interests that don't affect them personally. I love that you're even thinking about what he might gain from it Jess. I still think about you coaching my oldest boy in the first ever VCF Children's choir, he loved that. I don't usually encourage him to participate in things like that because most of the adults in charge are not tolerant enough.

When my oldest son was little, I took him to plays that were targeted just to small children. I didn't take him to a general audience play (Oklahoma) until he was seven, and even that was approaching the boundaries. I generally pick seats on the aisle in case we need to make a hasty exit. Half way through he got up and started walking toward the stage while the play was still in progress, because he wanted to see how the set was made.

It's such a hard line to draw - we have standards set, and necessarily so, of how people are supposed to behave in certain situations in order to be considerate of the others around them. Yet if an individual is UNABLE to meet those standars, should they always be left out? In a civilized society, I would hate to draw that conclusion.

Jason's idea of special performances to accommodate special groups are WIDELY popular in those communities, yet this option is often not considered. Disneyland has a "gay" night in their park on occasion. Sesame Place has two dates per year that cater especially to children with disabilities, one specifically for autism. You could consider that bad or good; is that inclusion, or is it just another form of discrimination? Aren't we supposed to be working towards acceptance, not segregation? I think there is a strong argument that those special occasions DO demonstrate acceptance, at least for now, because the people who participate are actually more comfortable in those forums as opposed to being "mainstreamed."

I will tell you that I would gladly take my boy to see ACL if there was such a special performance in Philly (if I could afford it!)

My family participated in a week long christian family camp this last summer that was a huge deal for us. The preparation I went through for it was enormous. I felt comfortable making that choice because the counselors were already trained to accommodate campers with special needs, boasting not only a "special needs" week for the mentally challenged, but just the week before our "family" camp, they had a week of autism day camp including children who attended with personal care workers. That had been a really sensitizing experience, and by the time my family showed up, the counselors were very enthusiastic to put their new skills to work. I had attended this camp myself as a child, and I know without the combination of all those variables, I would have unlikely felt comfortable attending.

One thing that really drew me to VCF Barn when I was in the market for a new church back in 2004 was the parents' rooms where one could breastfeed and care for young children while still participating in the service without disrupting it. As it turned out, the constant stream of traffic in and out of the office behind it made it semi chaotic. I was looking forward to the new room built in the new church where the service could be viewed without sharing function with administration. Yet I heard recently that the room was changed to a drop off nursery, so if a parent wishes to nurse a child, they now do so in locations without visual attachment to the worship service. I think that's a shame, but I know when there is limited space and resources, you try to take care of the majority of perceived needs of your congregation.

That's very often the kind of philosophy that finds people with special needs on the outside. I always used to be aggravated when Spock (and here I reveal myself as a closet trekkie) of Star Trek fame used to say "the needs of the many outweigh the needs of the few." That very much marginalizes the same members of society repeatedly. Aren't we more enlightened than that?

A few years ago another old church nearby that my extended family had attended for generations got a new pastor, and he quickly shut down the Sunday night service for lack of heavy enough attendence. I was disgusted with him because I knew at least one person in particular who attended such a service because it was the ONLY way she could. Had the pastor taken her into consideration?

I couldn't help but think of God's promise to Abraham not to destroy Sodom and Gomorrah if he would find even just ten souls that weren't wicked there. I feel pretty sure that if Abraham had kept wittling down the number to even one, that God would have still agreed to spare the cities because he values us all so much. I had at least hoped that the pastor would figure out another way for this one member of his congregation to get her needs met.

For us, I know that large churches exist that have a "noise" room with glass, and that is an option that my ancestors didn't have, so I should be grateful. I attended one such service at Calvary in Orange County CA. But I can't help but feel that my children will be better served in a small church environment than a mega one for which we would have a very long, wearing drive anyway. My goal is for them to participate and build relationships in their own local community as much as possible.

Hopefully this issue, like the environment, is starting to take greater priority in the age to come. I know that with autism on the rise specifically at an astronomic rate, it's an issue that will have to be dealt with. Recently I read a newspaper article written the year after the 2000 census that reported that fifteen percent of school age children now require some kind of special education services. That's roughly one in seven. The autism epidemic is only adding fuel to that fire.

It seems so wrong for me to be happy that there will more likely be more inclusion opportunities for my kids in the future when that probabilty is based on the increased rate of disability. Hopefully we will not only be more sensitive about inclusion and acceptance, but will be inspired as a society to look harder for the causes of why we have so many special needs in the first place.

Why does this issue matter so much? Because the extent to which the "least of these," our brethren, are included in our society often impacts in great ways their level of functioning and contribution. I think you were right to speculate what positive effect ACL might have on him. We can't know, but it might be a lot, especially if it's part of a cumulative effort. And the kind of effect it has ones who accept is profound as well. The people who take care of and include special needs people are changed in ways they can't imagine.

My oldest is now a teenager, and I know that college, career, marriage and family are all possibilities for him if only he gets the right kind of socialization NOW. Recently I was praying about finding a Youth Group environment for him which he might be able to attend independently (meaning without me or his father for a change, although we would still be willing to do that too) with the right kind of leadership and concern from the other participants. Developing independence is so very critical. A month or so later an invitation to youth group popped into my email inbox and I thought, "well lord, is this the answer?"

I contacted the youth leader and explained the situation, and he asked for some time to pray on the situation. It's been two months, and I've had no reply. Not a yes OR a no, or a "we're still thinking about it" or "we need more information."

Sadly, this is a frequent kind of occurence. People are very uncomfortable with this issue, they hate to say no, but they are afraid to say yes. This happens to us and others similarly situated all the time, especially when faith based organizations are involved. And I understand completely. It's a tough line to walk.

Even with two autistic kids, I know that if I sat next to a very disruptive audience member (have done that with drunks and druggies at rock concerts) and had paid a massive amount of money for tickets, I would be fully irked. I might at least ask for tickets for another night or my money back. As the parent, I would be checking to see if there was seating more conducive to my child's needs, but maybe in this case, there wasn't any. Tough line to walk.