Why is Dumb Funny?

Somehow or other, I came across a news story this weekend about a coffee shop that had opened up in Los Angeles called “Dumb Starbucks.” I cringed.

Why is Dumb Funny

What the fuck is this? I thought. Is Starbucks behind this? Is someone else? What does it mean? What’s the point?

As it turns out, it’s a parody of the real Starbucks chain, and comedian Nathan Fielder is behind it. The point of it, apparently, besides publicity, is to make fun of Starbucks. By calling it “dumb.”

Why is Dumb Funny

Sigh.

You know, I really don’t want to be a cranky pain in the ass, constantly on the lookout for a hint of offensive. I’m a fan of humor, of parody, of irreverence. A HUGE fan! Sarcasm is my second language. But I don’t understand why it is still okay to use intelligence as a means to value people and things.

Intelligence seems to be the be-all end-all, the mother of all attributes. Everyone wants to be a genius, or wants their kids to be geniuses. Well, guess what? The vast majority of us are not geniuses – and even those of us who may be very, very intelligent are unlikely to do really great things with that super intellect. Most of us, regardless of our IQs, will live pretty average, unremarkable lives. That is not to say meaningless lives – we each give our own lives meaning – but in the end, I don’t think intelligence has very much at all to do with how meaningful or fulfilling our lives are.

Even within the Down syndrome parenting community, there are many, many parents who reject the notion that their intellectually disabled child is not smart. We build up our kids’ intelligence because, apparently, while we can deal with heart defects and celiac disease and leukemia, we cannot deal with low intellect. A memoir I recently read by a young man with autism mentioned that people often assumed he was “retarded” because of his having autism, but, he insisted, he is not “retarded.” Even within the disability community, being not smart seems to be the very worst trait a person can have.

I’ve written endlessly about the use of “retard” and “retarded” as slurs. The truth is, though, that “retard” and “retarded” are only the most crude and obnoxious ways we insult and value people based upon their intellect. Calling people and things “dumb,” “stupid,” “idiotic,” and “moronic” are similar reflections of how we view intellect and intelligence, and how we value people based on those things.

I doubt Nathan Fielder was thinking specifically of Down syndrome or any intellectual disability when he undertook this project – and yet, it does reflect a certain attitude that smart = good/superior, and not smart = bad/inferior. After all, he didn’t call it “Smart Starbucks.” What would be funny about that?

Imagine if he had decided to call his parody store “Fat Starbucks,” or “Gay Starbucks,” or “Poor Starbucks”? Would that be as funny as “Dumb Starbucks”?

Prejudice

Prejudice

Well, I certainly got a big, fat reality check with that last post about Finn’s IEP meeting. Prejudice against kids with developmental disabilities is alive and well! Only, it’s not just the blatant kind, where people make “retard” comments or express their gratitude that they don’t have a kid like mine. No, this is a more stealthy – and also more insidious – kind of prejudice: the kind that’s cloaked in good intentions, in well-meaningness, in gently trying to get me to see reality as they see it – that Finn is less than, and that he always will be, and that he should be treated accordingly.

It’s not that I want anyone to blow sunshine up my ass – if you’ve spent any time here on this blog at all, you know that I’m not a blow-sunshine-up-my-or-anyone-else’s-ass kind of girl. And it’s not that I expect or even want everyone to agree with me on all issues (okay, well, maybe that would be helpful in my plan to take over the world . . .) I genuinely appreciate engaging in discussion, in constructive debate, in sharing ideas that maybe hadn’t occurred to me. What I don’t appreciate is anyone trying to shove their version of reality down my throat.

Here’s the thing: just because something doesn’t make sense to you, just because you can’t figure out how something can possibly work, just because your sense of logic doesn’t explain certain ideas and mechanisms to you – that doesn’t mean that what you have settled on as “reality” is actually reality. Look – I have no fucking idea how the doctors came up with certain concoctions of chemicals and a regimen of how to administer them, along with their plan and actual implementation of that plan of how to slice my husband’s body open and remove certain problematic tissue – to cure him of cancer (or at least put him into remission for this past four years) – but just because I don’t understand it and can’t explain it doesn’t mean that it’s not possible, that it didn’t actually happen. Just because I don’t understand the mechanisms of aerodynamics and physics, and my sense of logic tells me that a multi-ton jumbo jet cannot possibly lift off into the air and remain airborne – that doesn’t mean that multi-ton jumbo jets don’t actually lift off into the air and remain airborne, carrying people all over the planet, all the fucking time.

If you’ve decided that my son can’t succeed in a general ed classroom because he is intellectually disabled – based solely on your sense of logic – that’s prejudice. Prejudice means “pre-judging” – and it’s almost always based on erroneous perceptions and ideas. If you can’t back your position up with actual facts and evidence, then it’s merely your opinion – not fact, not reality.

It’s been very disheartening this last day or two to realize that this is what we’re up against – not just a shitty school district that has its own pocketbook at the very top of its list of priorities, above serving the actual students in its charge to the best of its ability (this is the “system” I should just “stop fighting,” apparently) – but my own peers – parents of kids with whom Finn (and all the rest of my kids) will attend school for the next decade and a half. Parents who believe that Finn doesn’t belong in the same classes their kids are in because he’s developmentally disabled. Parents who see a diagnosis, a label, or, yes, even a developmental age that a mother was foolish enough to reveal, and pre-judge based on that. Parents who are close-minded, who see limitations, not possibilities. Parents who think it’s unfair for me to expect teachers to tailor things for Finn so that he can learn. Parents who think it’s unfair that Finn’s presence, with his accommodations, will present distractions to the rest of the class. Parents who will, intentionally or not, pass these same pre-judgments down to their kids – my son’s peers.

And so the cycle of prejudice and discrimination continues to thrive.

Here’s what I would like to ask of you: don’t pre-judge. Don’t decide that this can’t work. Try to have an open mind. Don’t limit a little boy you don’t even know – not the way I know him – based on numbers, or even based on your own perceptions and your own personal observations elsewhere. Root for Finn. Cheer for him. Trust that we, Finn’s parents, are traveling this road with our eyes wide open – that of course we question and doubt and worry, but that ultimately, we’re doing what we’re doing because we’ve done our homework, and continue to do our homework, and we believe it’s what will benefit Finn the most out of all the possibilities open to us.

Finn

We are almost two weeks into the new school year, and Finn still languishes without a proper school placement. He continued to attend preschool two mornings a week throughout the summer, and is also now back at speech therapy twice a week, but still no resolution with the school district regarding his IEP. We also blew through our initial $2,500 retainer very quickly (it doesn’t take much – a file review, a couple letters, a meeting or two between associate attorneys, a few phone calls, and poof!), and have had to scramble to come up with yet more money that we really can’t afford. A couple of weeks ago, our attorney sent a letter to the Director of Special Ed formally disagreeing with the district’s evaluations of Finn and demanding independent evaluations at the district’s expense. We got word from our attorney yesterday that the new Director (the one we’ve dealt with retired at the end of July) would like to meet with us informally to try to resolve this whole thing. We’ve agreed to a meeting, at which our attorney will be present (cha-ching!), which will take place in about two weeks. I can’t say that I am even cautiously optimistic, however. Our experiences with the Fullerton School District over the last two years – since Finn’s initial IEP when he turned three – have been overwhelmingly awful, and in all honesty, I have not spoken to a single other family in the district who has a child with an IEP who has had a positive experience with the district.

This morning I had an interesting exchange. I dropped Finn at speech therapy, which he receives at one of the other local public elementary schools in the district. As I was walking back to my truck, the principal approached me. She was present at Finn’s IEP meeting in June, and prior to that meeting, I had at least one phone conversation with her wherein she expressed her support for our desire to see Finn placed in a general ed classroom. It therefore came as somewhat of a shock and disappointment when, during the IEP meeting, she stated her support for the district’s recommendation of a SDC placement for Finn. Finn’s speech therapist, with whom we have a wonderful rapport, also has always expressed her support of our desire to have Finn placed in general ed, and her faith that he would do well there – until the IEP meeting in June, when she was suddenly closed-mouthed.

So this morning the principal approached me. We exchanged chit chat for a couple of minutes, and then she said, “Have you met the new director of Student Services?” Warily, I said, “No . . . it’s funny you mention that, though. You know we retained an attorney, right?” She gave me a thumbs up and said, “Good for you.” I told her that we actually may be meeting with the new director in the next couple of weeks. She said, “I think you’ll be pleasantly surprised. I think you guys will get what you want for Finn now.” I said, “Yeah, I’ll believe that when I see it.” She said, “There was always just one person standing in the way of what you guys have been after for Finn. I think you’ll find that now that she’s gone, it’s a whole new ballgame.”

I have to say that this exchange infuriates me. It makes it clear that the prior director always held the strings, that she made a decision about Finn’s placement without ever having met him, based solely, I assume, on district resources and the diagnosis she saw in Finn’s file. There was not anything individualized about her decision about his placement, and the whole notion that there was an IEP “team” was a farce – there was never going to be any collaboration or meaningful discussion – she pulled rank, told all the “team” members who are employed by the district what agenda they were to push, and we were always at her mercy. How is this not a violation of the law, and of Finn’s rights? He has been deprived of a placement in the Least Restrictive Environment, and he has been deprived of a process which is supposed to be individualized for him.

Sadly, though, we probably have no recourse. I asked our attorney, after sharing this exchange with him, and he said that these claims are very difficult (and no doubt expensive) to prove, and it’s unlikely that any of the “team” members would be willing to testify against the district – their employer.

So, basically, we’re fucked. Unless they decide to play nice – and that remains to be seen. Even if things turn around now with a new director in place, it doesn’t undo what Finn has already been deprived of (and the longer his placement is delayed, the more of a disadvantage he’s at), and what we’ve already had to go through – including the money we’ve had to spend – in pursuit of something utterly fundamental and reasonable.

Meanwhile, Finn has been a challenge at home. He’s back to repeated tantrums throughout the day – has been for a while. I’ve tried to pay close attention to triggers, and it’s just really difficult to figure out what’s going in with him when he can’t tell me. The kid is pretty verbal, relatively speaking, but it’s not like we can sit down and have conversations about what’s bothering him. He’s entered a new phase of attempting more independence – wanting to do things for himself, like get himself dressed – and that is a triumph, but he struggles (when I look at his short, stubby fingers, it’s no wonder his fine motor skills are so wanting) and becomes easily frustrated. So I think that’s definitely a part of the whole tantrum thing – he’s wanting to do more and frustrated that it’s not coming as easily as he’d like it to. I suspect the other part is boredom and lack of structure. He doesn’t throw tantrums at preschool – not that he doesn’t have an occasional outburst, but overall, he’s just more content and better behaved at school, and this confirms to me all the more how sorely he needs something more than preschool two mornings a week. Being home with Mommy has lost its charm, I think. He’s five now, and he needs a structured routine that I can’t give him at home, and he needs to with peers more regularly and consistently.

So, that’s where we’re at.

Achievement, Acceptance, and Ableism: Link Up and Let’s Talk About It

After Finn was born and we were told that he has Down syndrome and the initial shock wore off, I had what I think is a pretty common response, and that was, “Well, he maybirth announcement 03 have Down syndrome, but he’s going to blow Down syndrome right out of the water.” MY kid is going to be different. MY kid is going to be the Superstar of Down syndrome. MY kid is going to make history with his achievements. There was a period of time when I hoped and wondered if it might be possible for Finn to have Down syndrome on paper only, but not practically speaking. I even spent some time seeking a modified diagnosis of mosaic Down syndrome, thinking that would be better than just straight-up Down syndrome. In some way, I supposed I thought that if we could change the name of what he had, it would make all the difference in who he was and how his life would turn out. Back then, I was still very much stuck on what I believed a fulfilling life consisted of, and it wasn’t disability.

Down syndrome

That was a long time ago. Seems like a different lifetime almost. Coming to terms with it all can be so hard, so heartbreaking, that many of us search for solace in allowing ourselves to believe that if only they were normal, everything will be okay.

I think it doesn’t help that one of the first things most of us begin hearing when our babies are fresh out of the womb and their blood samples fresh out from under a geneticist’s microscope is the catchphrase “full potential.” That term becomes ubiquitous, following our kids for years and years. We are always trying to ensure that they reach their full potential; they are always working to reach their full potential. To that end, nearly every interaction with our child becomes therapeutic and/or educational. Many of us fill up our schedules with various therapies for our children, and even between therapy appointments, we try to make sure that every toy they come into contact with, every minute they spend in front of the television has some sort of therapeutic or educational value.

What does full potential actually mean, though? Have you ever stopped and wondered? Does anyone – Down syndrome or not – ever really reach their “full potential”? How can potential even be measured? To say “reach” implies that at some point, there is an arrival, a destination. Why is there so much focus on “full potential” for kids with Down syndrome, but not typical kids? Why is there so much focus on achievement and intelligence among parents of kids with Down syndrome?

“Look what he can do! He’s just like other kids! He’s so smart!” Seen and heard all the time.

Why is it so important to us that our kids be smart? Why can’t we truly accept intellectual disability and instead try to outsmart it? None of us would cop to believing that intelligence = value, but our actions, words, even our advocacy sure seem to belie that. “More alike than different.” What’s wrong with being different?

I’m going to go out on a limb and suggest that it stems from that old fear that was planted with receiving the diagnosis. That fear of difference, that fear that we’re not cut out to be a parent to a kid with a disability. I think that while that common initial determination to raise a Down Syndrome Superstar usually fades, it often never completely leaves us, and we end up feeding it with all kinds of therapeutic and educational endeavors in an attempt to normalize our kids. What is therapy, anyway, except a measure taken to treat the condition of Down syndrome, to minimize the manifestations of it? It is no doubt undertaken with love and hope, but when you get right down to it, it’s very much an effort to make our kids fit an arbitrary standard. And it falls short of true acceptance – acceptance of difference, of limitations – and the ability to recognize that disability and limitations do not diminish a person’s value.

I am, of course, very proud of every milestone that Finn reaches, every achievement he makes – as I am with all of my kids. And it’s hard not to brag, because we want the world to celebrate with us. It’s a slippery slope, though, and I’ve learned – mostly through having Finn – that focusing too much on achievement is very much about vanity; that deeds and character and personal fulfillment run a lot deeper than achievement; and that achievement and intelligence have little to do with happiness and success, anyway. If we place too much value on achievement, it tends to devalue some of the very people we claim to be advocating for: those who cannot achieve as much. And it flies in the face of these values we claim to embrace thanks to having a child with Down syndrome: tolerance, acceptance of differences, embracement of diversity, even compassion. What good are those values if, really, what we want is for our kid to be as normal and high-achieving as possible?

Ableism is defined as “discrimination or prejudice against people with disabilities,” or “discrimination in favor of the able-bodied.” We, as parents of children with Down syndrome, would be hard-pressed to apply that term to ourselves. But if what we’re doing is trying to make our kids as normal as possible, then isn’t ableism exactly what we’re engaging in? (I’m going to get hate mail for this, aren’t I?)

Within the deaf community, there rages an ongoing debate about cochlear implants – a surgically implanted electronic device that can give a deaf or hard of hearing person a sense of hearing. On one side of the debate are those who feel that deafness is not a defect, but just a way of being, and that deaf people do not need to be fixed. On the other side of the debate are those who do believe that deafness is a defect, and if current technology and wisdom can help deaf people fit in, then those measures should be undertaken. There is a similar debate in the dwarf community over limb-lengthening surgery, which involves breaking the bones in the limbs repeatedly over the course of several years and surgically forcing the genetically shortened limbs to grow to “normal” lengths – all in the name of helping those with dwarfism fit into normal society. It seems drastic – sadistic, even – but the parents who put their children through limb-lengthening surgeries (it must be undertaken during childhood) do it out of love and hope and all the best intentions. Detractors of these normalizing measures would probably not hesitate to call it ableism – a prejudice in favor of “normal” or non-disabled.

Down syndrome

I wonder why the same debate doesn’t seem to occur in the Down syndrome parenting community with regard to all the measures we undertake to improve, treat, and normalize our kids – beyond ensuring their good health. How much of those therapies are really more for us than for them? How much do those achievements secretly relieve us and encourage us to believe that we dodged a bullet, and that through hard work and determination we got a high-functioning kid, and that’s better than a lower-functioning kid? And what does it all prove, anyway – that we outsmarted Down syndrome? That our kid got a better form of Down syndrome? That our kid is going to be happy and successful?