True inclusion is an attitude, a life style. It doesn’t just include people with Down syndrome or different abilities. It includes respect for all types of people, all ages, all abilities, all different points of view, all religions, all sexual orientations, all parenting styles, etc. It is a hard thing to achieve but so worth striving for.
Not sure where exactly this came from but the Principles of Inclusion are:
– that EACH person belongs
– that EACH person can learn
– that EACH person has the right to dignity
The problem with people practicing true community inclusion is the lack of peer relationships between neuro-typical people and those with developmental disabilities. Sure, people with disabilities get out in the community but not usually without family or a support worker. People with developmental disabilities frequently are only friends with other people with disabilities or their staff. I would like to see more friends out in the community with people with different abilities. I hope that my girls have good relationships with all types of people and I hope I can set a good example for this.
Inclusion in schools is a tricky one sometimes. Sure there is integration but there is still the learning assistance room where a lot of kids are ostracized too. Kids who go there usually have a diagnosis of some kind and their peers know this and label them for it. Sometimes families or schools have certain expectations or a lack of expectations that don’t fit with the child, the school, or the family for some reason. This is a difficult conversation to have at times.
I was an EA in a high school for a little bit and worked with one student with DS whose parents wanted him fully included in every minute of the class and didn’t want much adapted for him either. I don’t disagree with this strategy completely but I do think there were things the parents didn’t consider. This child was years behind academically and at the high school level he was very bored during certain subjects. Because of the boredom he was disruptive. This outcome wasn’t fair to the child who wanted to learn or the other students in the class.
I haven’t had to tackle the school system as a parent yet, that’s next year. I’m sure I will gain new perspective and ideas as I grow in to that role. I think inclusion in the school system takes open minded teachers, EA’s, principals and parents who work together to come up with the best strategies for the child to succeed. All children can learn, they just may need a little extra assistance. That assistance will look different for each individual child so it is unfair to paint them all with the same brush and expect them to all succeed in a fully integrated classroom or ostracized in a learning assistance room.
The hardest point of inclusion that I have found most difficult for people to truly get is the dignity aspect of it. Dignity needs to be considered in many different areas for people with DS and different abilities. Dignity in their privacy, their rights, their choices, their successes. Frequently, their lives are decided for them to a certain extent, because of the extra support they may need they are on someone else’s schedule and way of doing things. Their choices are limited because of how society views them. I have frequently been out with an individual who is taking the lead, making choices about their finances or even just their food, and the person they are talking too looks back to me for confirmation that the individuals choice was okay.
One of the biggest frustrations I have is the lack of an individuals dignity to succeed or fail. As a support worker or family member it is our job to make sure they don’t fail… right? WRONG! Everyone fails! It is part of life. It is part of being human. We try things and sometimes we succeed and sometimes we fail.
I remember working for an agency as a support worker and taking an individual who was obsessed with food to the pet store in the mall. It was a spur of the moment decision for us, although I did know that we weren’t supposed to take her to places where there might be food. (I didn’t agree with a lot of the practices of this agency and toed the line frequently!) We had a great time at the pet store and she loved seeing the kittens. The outing was a huge success. Yes, it could have failed. She could have noticed the smell of cinnamon buns coming down the hall way and chosen to demand one, possibly even causing a scene, but she didn’t. When I got back and my manager found out, I was reprimanded for the possibility of it being a failure. WTF?!
Maggy, my sister with DS, has had many successes and failures with us. Her weight is a struggle but she keeps it in check. One of her most controversial successes was getting a tattoo. A few people didn’t agree with us “allowing” her to get one. We all have numerous tattoos in our family so it was no wonder that she wanted one too. We knew she may not completely understand how painful it is but figured if she ended up with only half a tattoo because she didn’t want to endure the pain anymore, then so be it! She was hard core though and has been talking about another one on her shoulder! You can read all about her success HERE!
Here is another little saying that has been grilled in to me over the years that I can’t remember where it is from…
The role of a support worker:
-if a task can be taught… Teach it.
-if it can’t be taught… Adapt it.
-if you can’t adapt it… Support it.
I actually kind of love that one.
Like I said, true inclusion is hard and takes a certain frame of mind. I just hope that as my daughters grow up they will be able to lead by example and experience this in a powerful way. I’m sure I have a lot to learn myself. I’m excited to see what they teach me and how they, along with their friends, will help to change the current attitudes in our society.