Originally published at: How the language of special education denigrates kids with disabilities | Boing Boing
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“I don’t cope, I love”
Roger That!
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A lot of kids fall through the cracks I think, they don’t have high support needs so they don’t qualify for Katie Beckett Waivers. This lets the kid get medicaid coverage even if the parents have insurance and make enough money. At least when we looked into it, they needed to be going to 4 therapies a week, which my son does not need at all, he needed OT and maybe speech at that time but not anymore. BUT private insurance is horrible when it comes to covering stuff for autism (IDK about other disabilities) so that’s why social workers push the waivers. We ended up paying for OT out of pocket because they were out of network with insurance. A kid with low support needs can have a lot of trouble accessing services because of all this nonsense. More autism related stuff needs to be covered and insurers need to have better networks (I’ve had insurance with several big companies over the years, finding providers that were in network was a problem with ALL of them, BCBS has the best network so far though).
Also yes, the autistic community hates person first language, I’ve yet to meet an autistic person who prefers it!
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This isn’t really about language.
This is about a very sheltered, rich, connected man discovering the Brazil-like run-around that is trying to comply with a bureaucracy which has the unstated goal of denying help to as many people as possible. Someone who had ever tangled with an Anglo-American “welfare” system would be well used to code switching into “dealing with the system” mode.
Ultimately, this also shows the futility of a mindset where language dictates reality. The program is designed to help people who are experiencing difficulties. If, for ideological reasons, you refuse to see difficulties which require support as such, then the system is not going to engage you in lively debate. It will gladly agree that there is no difficulty, therefore no support.
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Well, thanks to Victorian ideals of deserving and undeserving charity recipients, we get loads of things like this. I’ve spent the last year filling out forms, getting rejected, and going back to “describe the worst of times” to qualify for care, and the support my child will need to be able to attend school, and beyond. It’s hard trying to see things in a positive light, but describe them as horrible burdens, and not have that reflect on the way you see your child.
I am so glad I no longer live in the US, as the people I’m arguing with are government employees bound by law to provide us with care, not accountants in an insurance company.
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If this rich, sheltered, connected man uses his platform to bring awareness to this system to other rich men, I feel like that’s a move in the right direction.
You are correct, of course.
I think you hit the nail on the head there. Like most liberals, the author can only see this as a problem of the language we use to talk about charity cases, because he’s internalised the right-wing lie that welfare is charity, so of course getting welfare is a question of how much pity you deserve.
If we correctly viewed welfare as a means to pay people for unwaged labor, then this problem wouldn’t arise. You wouldn’t have to dramatise how tragic your life is, you’d just say how much work you are doing and get paid for it.
Of course, that would invite the question “why aren’t we paying all parents and carers?”, which politicians are keen to avoid. But mostly it’s an ideological thing; if someone is paid by the state, they must make a show of groveling for it in return, so politicians can tell their voters “look, we’ve given you these people to look down on!”
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The fundamental problem here?
In the U.S., there’s no universal health coverage. Every family has to navigate the rules of their health insurance policy – if they’re lucky enough to have one – or else advocate (and pay) directly for medical assistance at all levels.
Thus, these games. It’s the medical community versus the insurance community, with families playing the part of the tug-of-war rope.
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In the case of special needs children I’d be curious to know how much squaring of the circle the author describes this would actually achieve.
It’s undoubtedly the case that the system could be much, much, less interested in just looking for a reason to strike you from the rolls if it is legally possible; but something like:
“Someone at a local nonprofit advised us to create a spreadsheet that detailed every minute of every day that we had to do something for him that we might not have to do for a typical kid. I tried for 15 minutes, characterizing difference as struggle, then deleted the spreadsheet. I didn’t like the way it was making me look at my son.”
Is pretty much the author being advised to say how much work he’s doing; and he doesn’t like the answer(though he doesn’t actually disagree with it; he just wants it to happen without him having to say it).
In terms of cultural undervaluation of labor this guy, at least, looks like he is arguably involved as well: he admits that he needs, and his child benefits from/would be much worse off without, an unspecified number of various therapists doing their various things; but “all we have to do is to sit there, annually, while these kind therapists write out how far behind our son has fallen from “normal” developmental milestones”. Apparently the therapists talking about all the work that they’ve been doing, and the challenges it entails, is some sort of monster’s price for them doing it.
This isn’t to say that the status quo is wonderful(far from it); but I’m uncomfortably reminded of the attitudes of (often men, which probably isn’t helping this writer’s case) who feel sufficiently entitled to the emotional and other labor that keeps their life humming smoothly along that they are uncomfortable thinking about it, downright affronted if they should need to ask for it; and go downhill fast from there should they be denied it.
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Women have been doing this labor for literally centuries (and still carry the brunt of it). He’s pretty much just experiencing what women in the modern world who are “homemakers” (which is not considered a “real” job) are regularly dealing with as primary parent on the front lines. But, of course, since a man is writing about it, it’s a STORY that needs to be dealt with rather than a random Tuesday.
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Yeah, I can’t say that my read of his article was…uninfluenced…by observing my parents; specifically the part where my father typically didn’t mind paying for stuff; but Did Not Want to have to get into the details of the work, whether actually doing it or even acknowledging how much was being done.
This piece is written in the tone of (I assume sincere) upset at having to itemize the labor relative to one’s child’s condition, which is more sympathetic than someone who is incensed at having to examine what goes into their own care and feeding; but I still can’t shake the taste of a man who is sufficiently convinced that he shouldn’t have to think about all the labor going into his kid that he sees merely having to itemize a day of it as an inhumane price to pay for having it done by somebody else for him.
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I do think it’s also driven a bit by them not wanting their kid to feel less than human because of their specific struggles. But the truth is that childrearing (of ANY child) is labor, and it’s not generally recognized as such. Which is why we don’t pay women who stay at home with the kids at all, or those who work with very young children very well.
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I do not know if this is still the case, but at the time we looked into a Katie Beckett medicaid waiver, my kid would have to go to therapy 4 days per week. If he just had 4 therapies per week, but did two of them on the same day (for instance, his OT place also offered speech), that would technically not count and he could get kicked off the program. That’s the level of nitpicky bullshit you get into with the US health system/government.
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While that seems like an eminently understandable and sympathetic goal; it seems like it’s also walking right into a rhetorical trap that is basically unwinnable.
In the case of something like " a well-intentioned employee advised us to describe our “child’s worst day” in our application. We gritted our teeth. We argued for “severe” instead of “mild.” We dehumanized our son in the paperwork but got support." the obvious-if-deeply-impolitic follow-up question is “So, if it ‘dehumanized’ your son to be classified in the ‘severe’ group; what are you saying about the people in the ‘severe’ group?”
As soon as you start to wander away from the idea that we can be both full people and have full pathologies(indeed, most of us will, though in some cases they’ll kill us quickly and thoroughly enough that the juxtaposition won’t become terribly relevant) you end up in the position of both implicitly justifying your, or your kid’s humanity, against the people who have it worse; both unpalatable in itself and unhelpful to you whenever the possibility that you differ in degree rather than kind from them crops up.
It’s a perfectly understandable thing to do, this isn’t a “you monster!” condemnation; but it’s the case that implicitly accepting the position you are trying to argue against is not generally going to work out.
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But the system that makes people jumps through hoops is the problem here, at the heart of it. The systems that are meant to support people are difficult to navigate, and the reason for that is to ensure as few people as possible actually participate in these programs, so that there is an argument for ending them. This goes for basic welfare programs to school programs meant to ensure equal access for people with various disabilities or differences. None of these should be difficult to get for anyone, because these programs help ensure equality for all Americans.
The guy seems more like he’s arguing with the difficulty in navigating these programs, both through the state and private insurance, and no one should be subject to that. This person might be in a privileged position, especially with regards to having the time to navigate this system. But that right there is the real problem.
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Really, I am shaking my head, and yet looking for the bright spot, that this guy wants society to transform and accept his adorable kid, instead of the other way around.
I love my son. All of the qualities I love, his crazy imagination, his focus, his curiosity, and his demand for perfection but, I needed to re-state all that in order to get him the help he needs. We never had to “dehumanize” him, just to be objective and exhaustive. Moreover, Down syndrome kids have different needs than autism kids. This dad has an even steeper hill to climb because of the prognosis for his greatest-son-in-the-history-of-the-universe.
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When our son was diagnosed with “classic” autism at age 2, more than 10 years ago, we had to make a choice: Texas or California. It was zero to 100% California. His pediatric neurologist recommended 20 hours per week of all sorts of development therapy, informed us of the need for a so-called IEP, and referred us to a local non-profit parent support group, a godsend. Our son has required meticulous instruction on all facets of basic daily living skills he would need in any society, and diapers until age 5, not to mention social skills into the unending future.
Even with California’s elaborate early intervention system, we faced denial after denial after denial. For many years, my life consisted of waking, working, commuting, and arguing on the phone with everyone: public agencies, schools and insurance companies. I hesitate to call that a good life. Just ask my wife what we still need to do for him. These days, because of California’s early intervention program, he needs much less help than at age 2.
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Even with universal health coverage, if enough money isn’t allocated to pay for all the services people request, the government will push back. One fundamental question will always be: given a limited budget, who decides how much coverage is sufficient?
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I don’t want to split hairs here, but what we have is an article written about the disability community, with no actual disabled voices represented here.
Waters are muddied on ‘person first’ language in ways that I’m not sure the community would support. I can’t speak to how it should be directly addressed, but I’d really be careful about writing articles about how disability should be discussed, or framed, without actually getting a real quote or representation of someone capable of speaking for themselves.
A good rule is, if we’re writing to try and expand the dignity and protection of vulnerable folks, we should also be including them.
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While I agree with your points regarding the relative privilege of the author, this argument doesn’t sit with me. He’s not refuse to see difficulties, he’s refusing to see his son being deficient as the source of those difficulties. It feels like the difference between the (neo)liberal, medical model of disability, where people’s bodies are the problem, and need to be fixed or pities, versus the social model of disability, that recognizes that bodies vary, and aren’t necessarily good or bad bodies, but some bodies are rendered disabled by societal norms that don’t accommodate them.
This kid should be able to receive accommodation because he’s a human who is not accommodated, and experiencing difficulties as a result. He should receive accommodation because he is able to generate a substantial list of ways that he’s a failure because of the body he was born in.
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