Monday, June 21, 2010

Disability is Natural

Chris and I have been spending one weekend a month since February at the Partners in Policymaking meetings I discussed on this blog post. The experience and the knowledge gained at these meetings are life changing. Really. It's that powerful.

I will do some future posts on learnings from these monthly meetings that I want to share with everyone. Today, though, I want to focus a bit on what was discussed this month: Disability is Natural. Our guest speaker from Colorado, Kathie Snow, presented this subject from her experience as a parent with a son that has cerebral palsy and was educated in an inclusive environment. Please know that I couldn't possibly do her 3 hour presentation much justice at all in this brief blog post, so please check out her website found here that has loads of thought provoking articles and website resources to explore.

Mrs. Snow's presentation centered around the concept that there are two worlds: Disability World and Real World. The Real World is what typical children would do at any given age and she contrasts that to what children of the same age are doing and what is expected of them. She presents the concept that we need to give our disabled children the same opportunities as our typical children - to have time to make friends, be included in a typical classrooms, go to birthday parties (where therapists are not the only "friends" in attendance!), gain independence, held responsible for age-appropriate activities, etc. Basically, to be included in real world activities.

In contrast, Disability World is a place where people are judged by the medical diagnosis and everyone is working to "fix" it. The child gets the message that they are broken or something is wrong with them and often is hurts their self-esteem and results in learned helplessness. The thing is, people with disabilities don't need to be fixed. Disability is a natural part of the human experience and we should learn to embrace in general society people with disabilities.

People with disabilities don't need to be labelled and segregated out. Separate is NOT equal. But yet, children with disabilities are usually separated out into special education classes (and special sports teams such as Special Olympics, etc.) without even given the opportunity to be included in typical classrooms. They can only place out of special ed when it is deemed they are "normal enough." The caution from Kathie and many of the other speakers and those in the program that are disabled adults that went through the special ed system is that it is VERY EASY TO GET INTO the special ed system/classroom, but VERY, VERY DIFFICULT TO GET OUT of that classroom. It is much, much better to start out learning in a typical classroom with appropriate supports.

Consider that regardless of the large amount of time children spend in special ed (usually up to age 21) and the money spent by the government to support these programs, the unemployment rate of disabled children who go through the system is >75%! At the end of the special ed road, parents and educators are often working towards the goal of getting the child into a group home instead of their own apartment. In group homes people are put together with relative strangers they have to live with. They have goals written down that they need to meet - such as making your bed within 20 minutes of waking up, having food dishes washed and put away within 30 minutes of finishing meal, etc. Who the heck wants to live to this standard? I often go without making my bed at all and am just FINE with that!

I don't want to start down a path that considers it a success to have my child living with strangers not of her choosing, in a place with rules that I don't want to live with, and to a life of poverty living off social security disability insurance. And, so, what Kathie presented really got to me. I didn't get much sleep that night thinking of how this talk applied to our life and what is possible for Emma. Chris and I want Emma to live in the Real World and NOT in Disability World. So, now we have to figure out how to navigate the road of school starting in a few months and know that we have a strong voice in Emma's placement. And while we know that the path will be a continuous work in process, the one thing that is certain is that we will exercise our authority to deny many of the "assessments" that well-intentioned people want to give to our daughter that will result in more labels. This includes IQ tests. I can honestly say that I find NO value in IQ tests and will not agree to any such test for either of my children. Other than that, we still have a lot to figure out and I feel extremely lucky that we are participating in Partners in Policymaking while Emma is young.

7 Comments from readers:

Erin said...

Very interesting.

Fletcher is 3.5 and received homebound preschool from our school district for the second half of the last school year and is currently in ESY in a sped classroom. I, too, have heard that once you are entrenched in sped, it is hard to go back to mainstream, but sometime I wonder about the ability of the mainstream classroom to teach typically developing kids, let alone someone with the challenges my son faces.

It is such a personal decision, and so hard to know if you are making the right one.

Kristina said...

Erin - Thanks for the comment! I couldn't agree more that the choice is so personal and we know our child the best. Also, each school district is very different and what might work in one district might not in another. The thing about Kathie is that she is more Black and White than I am, but I sure was glad to have a totally different side of the story presented so that we can make more informed choice.

abby said...

How far north are you guys moving (I just discovered your blog, through a micropreemie blog that I read, and only read back a few posts)? We're in Philly and have a 23 weeker (former micropreemie) who is autistic. She is at a FABULOUS inclusive typical preschool in Philly. While I wouldn't necessarily advocate moving to the Phila. School District, the school takes kids from NJ, the Philly suburbs, and I am sure would not balk at DE, either. It is FABULOUS. Hallie has done really well there. The director has a degree in Music Ed and Special Ed, they have a movement therapist on staff, multiple kids with different abilities (kids who use walkers, kids who cannot walk, kids who cannot talk, etc) and lots of typical kids who learn empathy, inclusiveness, and not to bully. Hallie gets services in school and has an aide with her full time. Between the school staff, her aide, and the other kids, she is included in everything and has thrived.

Anyway, we link to her school on our blog and are happy to talk to you more about this if you like.

Anonymous said...

We chose homeschooling for our daughter with CP. She has an active intellect and actually thinks more deeply and critically than our "typical" daughter (also homeschooled). We did not want our daughter put into a special ed class where she would be bored to tears. Yes, it's a lot more work. Yes, sometimes I feel like I'm going crazy. But I'm absolutely certain that homeschooling is the best for us. She's getting all the support she needs to reach her potential. And she's thriving!

Anonymous said...

Another philosophy you might consider is conductive education. There a few blogs centered around that concept, too.


Kristina said...

Abby - I'd love to chat with you more. We are looking at moving to Del. County, PA, so it seems like we don't live that far from you. Please email me as your comment came across without an email.

Barbara - I've heard good things about conductive ed., but there doesn't seem to be any places for cond. ed. in our area, unfortunately.

Anonymous - Home schooling is something we might consider in the future, but for now we are *hoping* to find a good fit for preschool for Emma outside the house.

Wherever HE Leads We'll Go said...

Very thought provoking post! We are looking at school in the fall as well. In my state, it seems that the majority of kids are put in typical classrooms. The thought of school still scares me, but I know it will be great for Emily.

The one thing that jumped out to me about this post (that I have been struggling with) is that we give Emily too much help right now. I think we have helped her to become helpless. I want to change that. I want to challenge her because I think she really can do more than she lets on (and we currently allow her to do). That is something that is worth changing. I do want her to be able to participate in so much in the "real world".