Unintended Barriers to Inclusion

There’s a very real and very serious barrier to the inclusion of people with significant physical and/or cognitive disabilities that no one talks about. We’ll march for political barriers, adapt physical barriers, advocate for social barriers but this barrier is more difficult because we don’t always recognize it. This barrier doesn’t come from rusty old tradition or callous hearts; in fact, sometimes it comes from we who are parents. The barrier to which I am referring is fear, the fear of letting students or individuals do things on their own because they may be vulnerable to be hurt.

Now, before I go any further, I will issue the following disclaimer: I am by no means advocating leaving students, with or without disabilities, unsupervised or in unsafe situations. If a reasonable person could expect a serious injury may occur without intervention by a member of school staff, you are required by law to assist him/her. However, the desire to protect and help students with special needs can quickly cross the line between protective to restrictive.

Let me explain. My son has a congenital musculoskeletal condition called arthrogryposis multiplex congenita. It causes contractures and joint insufficiencies as well as small stature. Additionally, he has some neurological deficits that cause him to have paralysis below his knees and severe dyspraxia of speech. As a result of these issues, he appears much smaller and younger than he his. Despite all of this, he is fiercely independent by nature and hates to be treated as, “little.” His first reaction when people speak to him or treat him patronizingly is to walk away or ignore them. However, if he is unable to retreat, he will withdraw and let people do whatever they are going to do. This reflex is sadly born out of years of surgeries and casting that left him unable to do much other than silently protest treatment as an infant and toddler.

When he was three years old and still using a walker, my son finally found the words to say, “No, Mommy!” as I dutifully followed him around the playground. Now, I knew that he could climb and slide and manage steps with some combination of holding rails, crawling and scooting at home and at therapy, but now we were at a park. The park was filled with fast moving kids who weren’t paying attention to a tiny little boy no larger than an 8-9 month old moving slowly around the equipment. I couldn’t just let him go, could I? Honestly, given that my biggest goal in life was to get him to talk, I didn’t have much choice; I had to acknowledge his communication. I let him go; I stepped back and watched my tiny boy scale playground equipment as the other kids dashed past. I watched in some strange combination of awe and terror as he mastered every obstacle and giggled and played for over an hour like any other three year old at the park.

Fast forward a few years, and we have just moved to a new city. My son was starting a new school in the first grade. He’d been in the school about 2 months when I pulled up one day to pick him up for an appointment. I saw his class out on the playground and just sat and watched before entering the school. I watched a paraprofessional shadow him all over the playground, push him on the swing, and zip up his jacket. Although I knew that he was well liked because we ran into classmates who were eager to see him at Kroger or public parks, very few children interacted with him at all on the playground. The huge grin that always shines when he’s playing on a park playground was absent on the school playground.

When I asked about this, the paraprofessional explained to me that he’d fallen once or twice in the thick, newly laid, beginning of school playground mulch.

“The mulch is in place so that it’s soft if kids fall on the playground, right?” I asked. When she responded affirmatively, I inquired, “Did he hurt the mulch?” (I admit this was not stellar advocating because my sarcasm wasn’t needed.) When she didn’t understand, I explained that I knew he hadn’t come home injured so the fact that he fell on a substrate made for children to fall on was no reason to interfere with his interaction with peers at recess. Kids don’t play the same way when adults are shadowing one of them. It telegraphs the idea that the shadowed child can’t do what peers do or needs help. This sets peers up to be the student’s helpers rather than just buddies if they even attempt to play with the child. I assured them that my son had survived many falls and was quite proficient at all of the equipment on their playground and he would not require any more supervision on the playground than any other child.

This same sort of fear-based barrier can come in the other direction. When you have a child with significant disabilities, especially if you’ve ever been unsure whether that child would survive, the need to protect that child from harm goes into hyper-drive. I assure you, there is no shortage of news stories, testimonials, and shared stories surrounding parents of children with special needs of tragedy, neglect, abuse, and bullying to keep us up at night. So, when our children start school and they aren’t able to tell us how their day was or where they got that scrape on their knee, it’s fairly terrifying for a while. One way many parents cope with this fear is by insisting on 1:1 paraprofessionals in their child’s IEP.

There certainly are students who require very close supervision and assistance because of their specialized health needs or behaviors. However, even in those circumstances, there are probably times when support personnel can fade into the background and let the student’s peers or general educators interact with the student in a more natural way. Can a fellow student practice reading aloud with student with profound physical impairments while the student with disabilities could uses a switch to read half of the pages? The student’s paraprofessional could oversee from a distance in case a health issue occurs without disrupting the interaction. General educators and students can push wheelchairs. Peers can help open containers, initiate greetings, carry trays… Even if safety dictates that a paraprofessional follow a student into all educational settings, intentionally allowing peers and general educators assist them whenever possible cements their belonging to the class where intervention from a paraprofessional who works only with that child reinforces his/her need for separation.

This is a difficult area to address especially when the perpetrators of the barrier are people who genuinely love the student with disabilities. No one wants a student to get hurt, and no one wants a parent to be afraid.

However, for true inclusion to happen, we have to allow genuine interaction in authentic situations. If the biggest risk to a student in allowing them independence or natural supports is no greater than the risk to any other student, (e.g., if he/she might fall on the playground just like any other student might,) it’s imperative to let the child try; to do otherwise is to deny the least restrictive environment. As a mother who has survived a stomach full of butterflies and traded it for the joys of watching her tiny little one cackle on a slide and eventually walk and then run, I can testify that the rewards of the courage to let them try are well worth it.

#families