the question of inclusion

i was just listening to an interview on Fresh Air (<3 Terry Gross) with ian somebodyorother, a (canadian) father whose son has an extremely rare genetic condition that causes global physical and cognitive delays. his son is ambulatory, but can't feed himself (he's had a feeding tube since he was a neonate; he's 15 now) and can't speak or understand language. he just recently published a memoir on raising his son (the boy in the moon, i think it's called).

when his son was 10, they found a residential home for him, because caring for him at home was just too hard. it made me think about how our society deals with people who can't care for themselves, be they physically/cognitively impaired children, or young adults, or neurotypical elders.

up until 40 or 50 years ago, if you had a kid that had "something wrong" with them (like down's syndrome), the recommended practice was to put them in an institution and forget that they existed. kids didn't live long in places like that; i think the life expectancy for someone with down's was about 30 yrs old. somehow we thought that this was a result of their extra chromosome, and not us killing them through neglect, but whatever. it's one of the reasons why nobody really knows how long a person with down's might live–the current life expectancy is hovering around 50, but then, that's about as long as it's been since the culture shifted to keeping handicapped kids at home and nurturing them, so we really don't have an older generation to set a realistic bar. if she stays healthy, my sister could easily live as long as me.

anyway, yeah, since the late 1960s there's been inclusion and mainstreaming and handicapped kids are expected to be kept at home and nurtured. federal law requires that special needs kids have an education, they're eligible for medicare, there are (in theory) support systems in place for people who can't care for themselves. which of course is great, as far as i'm concerned. but sometimes it feels like the inclusion is reluctant, or haphazard. just about every special needs parent i've ever talked to (or whose blog i've read) talks about battling their child's school district to make sure their kid gets the help that suits them best. there's always questions about what's best for the child. there's always gray areas. every special needs kid is unique. but listening to this dad talk, it was just so overwhelming to think of what went into caring for his kid, and how much he and his wife essentially had to do on their own–and they are an educated family in a first world country with universal health care and ample financial resources. i think there's a subtle cultural expectation now that parents of kids with special needs should be able to do it all, and do it largely on their own, and if they admit that they can't, or ask for extra help, then they're bad parents. this dad wanted to put his son in a residential care facility when his son was still a toddler–but in order to do that, he would have had to get himself declared unfit, and given custody of his son to the state. his son can't talk. he must be fed through a tube. he's prone to violent outbursts and self-harm. and somehow we expect two parents, with no specialized training whatsoever, to be the best people to handle him, and to be able to do it largely on their own. to stay up with him every single night (mother and father alternated nights) to make sure he didn't hurt himself or tear out his feeding tube. to deal with the exhaustion and the stress and the whatever. (significantly, the son's emotional health actually increased after he went to live at the home, and he had care from a larger number of people who were, collectively, less stressed out and exhausted because the burden was shared.)

i don’t mean to sound like i’m tearing down parents. i do think that parents know what their kid needs–these two parents know more about their son and the manifestations of his syndrome better than many doctors–but aren’t always the best people for the actual execution, if that makes sense. if a parent is totally overwhelmed because he has only slept every other night for the past decade, he should be able to say that, and he should be able to find a place with more support for his son, without having to say that he’s a bad father. because he’s not.

western culture has come a long way when it comes to treating people with cognitive delays humanely. but i still think we sort of fumble around. we still haven’t figured out exactly what’s best. fifty years ago, we sacrificed the children for the sake of the family; these days we’re in danger of sacrificing the family for the sake of the child (see: divorce rates of parents with special needs children higher than the national average). there has to be a system that is equitable and healthy and compassionate for all involved, and unfortunately, i think it involves taking a step that i don’t see our country taking any time soon: admitting that caring for people–not only people with cognitive delays, but ALL people–is not just the job of the individual family unit, but of society as a whole. admitting that there are kids out there who need more help than just a mom and a dad and a special ed teacher can provide. and then providing that, not begrudgingly, not with backhand assessments on the family’s “failure,” but gladly, because this is what needs to be done. this is really how we make sure that no child is left behind.

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