Archive for the ‘discussion’ Tag

How to talk to (or about) people   Leave a comment

I’m reading a very goo book right now about respectful parenting.

However.

There’s always a “however,” isn’t there?

Even people who are wonderfully respectful of children make mistakes. I haven’t talked to the book’s author about the problem and I’m not telling you who it is because I don’t want people piling on this author.

The problem is in a passage about how we should speak normally to children. The author is making a great point — that we don’t need to oversimplify and should presume competence when we’re talking to children — but then hurts the overall point by saying that we should not talk down to toddlers as if they are “mentally deficient.”

Here’s why that’s a problem.

We say we shouldn’t talk to children like they’re intellectually disabled (ID). People with ID say that we shouldn’t talk to them like they’re children. (Actually, being talked down to is a problem for most disabilities, but the passage I’m talking about specifies ID with the phrase “mentally deficient” so that’s what I’m going to speak to here.)

Presuming competence is important no matter the person. Someone who has an ID should be spoken to with respect for who they are as a person, what they know (and what they might know), keeping in mind their actual age. Don’t talk to an adult as though they are a child; even if you end up having to simplify your language a little bit, you shouldn’t do that thing people do when they talk to small children or to adults with ID, where the voice gets higher and the words get shorter and the conversation gets stilted.

By the same token, a child should be spoken to with respect for who they are as a person, what they know (and what they might know), keeping in mind their actual age. Don’t talk to a child as though they are an adult; make sure you simplify your language based on their ability to understand you. And don’t talk to children in that high-pitched, unnatural cadence, either. They’re people, and they understand more than you think they do.

My son is 22 months old, and he is gaining language by leaps and bounds right now. It’s astonishing to me, the number of words he has gained expressively over the last few weeks. He mostly communicates one word at a time, but we can still have whole conversations. I just have to pay attention to context and ask questions.

For example, a common exchange after we saw Santa for photos before Christmas:

R: Shashi. (Santa)
Me: Yes, you saw Santa.
R: Up! Up!
Me: He picked you up.
R: Taw.
Me: You were so tall!
R: Bin, bin.
Me: Oh, did he give you jelly beans?
R: Yeah. Mmmm!
Me: They were yummy, huh?
R: Yeah! Tee!
Me: Oh yes, there was a tree there, too.
R: Yeah.

See how expressive he is with just one or two words? Most people who have ID can speak in full sentences (regardless of how they speak, whether with voice or AAC). On top of that, receptive language develops much earlier than expressive language, so the odds are pretty good that someone who doesn’t speak as “well” as you do does actually understand everything you say to or about them. I know my son understands most of what we say to him. (He doesn’t get our jokes yet, but that’s okay. We make a lot of puns.)

The author is making a great point with this passage and made a poor choice of words. I hope that it isn’t indicative of an attitude that people with ID should be talked down to (and I don’t think it is, I think it was just a mistake). Instead of including the bit about being “mentally deficient,” the passage could have simply said not to talk down to children and then explained that receptive language develops earlier than expressive language, which means that children understand way more than they can say. No accidental demeaning of people with ID.

This kind of attitude — these kinds of sayings — are ubiquitous in society. Take a moment when you’re writing or talking. Consider whether there’s a more accurate way to say what you want to say: one that won’t damage a group of people.

Accepting disabilities   Leave a comment

Lots is going on right now.

This month is Autism Awareness Month in the US, which means that it’s become Autism Awareness Month all over the world, because heaven forbid other countries choose different months (did you know that Canada’s Autism Awareness Month is actually in October?); today, April 2, is World Autism Awareness Day.

The online autistic community [a group in which I am including allistic – non-autistic – allies] has rallied around Amanda Baggs, a prominent autistic activist, because she is in the hospital and the medical staff had been trying to convince her she shouldn’t get a feeding tube – something she needs because she’s been aspirating so much that without the tube she will probably die sooner than later. The campaign of e-mails and phone calls worked, and she is receiving the tube today.

Lots of other people have written about how the kind of awareness that is promoted by days and months like this leads to situations like Amanda’s. The wider autistic community has chosen to reject the idea of “awareness” and instead promote acceptance of autism.

Disabled people are devalued in our society. The attitude that Amanda has been dealing with is far too common. Expectant parents are routinely pressured to abort fetuses if prenatal testing shows any kind of abnormality (and babies born with disorders like severe apoxia are neglected, on the doctors’ orders). People’s medical needs are ignored because they have mental or developmental disorders. People are encouraged to seek their own deaths, to relieve the pressure on their caregivers. Supposed caregivers (including staff, who are paid to support individuals with disabilities) get away with systematic abuse (of every kind). And supposed caregivers (all too often, parents) are given light sentences after they murder the disabled people they’re supposed to be caring for, because it is so stressful to do so.

Note that the links in that paragraph are for more than one country.

We shouldn’t have to justify our existence.

Every day, I read things from people that basically say “I may be disabled, but I [do all of these things] so I deserve to exist.” The worse ones go so far as to say “At least I’m not [X].” (Where X is a “more severe” disability.) We shouldn’t have to say these things, but we do, because if we can’t prove that we’re worthy of respect and rights and all that other stuff non-disabled people never have to think about, well… people die.

I find it demeaning that I have to point out all of the ways in which ADHD disables me, in order to get people to accept that this condition is real and damaging, and then turn around and point out all of the ways in which I am successful, in order to get these same people to recognize that I am a human being. I don’t want pity, I want understanding and acceptance.

Let’s talk about acceptance for a while, shall we? So many people think that “acceptance” means “stop trying.” I don’t know how to tackle that, so I’m not even going to try. Instead, I’m going to describe what acceptance really means.

Acceptance means meeting people where they are at, right now. It means seeing the person as a whole, not just a small part of them. It means finding out what is important to them, what they want to achieve in life, and what kind of help they might need to get there. It means understanding that people’s differences are important and valuable. It means learning what is hindering people from living the lives they want to live, and working to help them have their lives as they want them. It means quality of life, it means success on their terms (not society’s terms), and it means respecting people.

Promoting acceptance automatically promotes awareness. The more we accept people for themselves, as they are; the more we respect others simply because they are human beings; the more we refuse to be afraid of showing our unique traits to the world… the more the world becomes aware of us, our needs, and our humanity.

I want to write about this more. (October 4, 2012, Tumblr)   1 comment

I posted this as part of a reblog of this post.

I think that a lot of these books (and the professionals we go to for help) don’t give us enough credit. I want to learn something new when I read one of these books, not have all the same old stuff tossed at me yet again. If that same old stuff worked, I wouldn’t be reading yet another book, now, would I?

And I think part of the problem is that they’re approaching the problems we have from the point of view that we need to find ways to make our lives function the way others’ lives function.

That makes absolutely no sense.

Aside from the need to be places on time (like work) and keep a job, why does everything about my life need to look and function the same way a non-ADHDer’s life does?

The answer is: it doesn’t. It really, really doesn’t.

Figuring that out has really opened up my eyes and given me a lot more positive outlook. Finding ways to force life to bend to my brain (instead of the other way around) has been challenging, and I haven’t quite succeeded yet. I still do a LOT of brain-wrangling (read the post I made last night to see how bad it can be). But I have far more successful days than I did when I was trying to make myself fit into a set of expectations that were unrealistic and didn’t make sense given my particular neurology. And while I do think that being able to stay home has had a big impact on that, I don’t think it was vital; since figuring this out, I’ve had plenty of successful days while working full-time (in an administrative position), as well.

I think that we are capable of figuring out how to bend life to suit our brains and still fit into society’s general expectations of “success” and “adult”; we’ve just been taught to think otherwise, because there’s an entire industry that hinges on our need for assistance. I think we can help each other in this pursuit, and we don’t have to spend anything to do that except our internet fees, which we would be paying anyway.

I want to talk about this some more. Because it’s something I only just found the words for today, so now I want to keep adding more words.

I want to talk about how I’m a “strong person.” I lived for 28 years without knowing I had ADHD, and even though I couldn’t figure out how to adult, I somehow managed to achieve “success.”

I want to talk about how I don’t feel strong a lot of the time, and how I spit out the phrase like it’s poison, because it’s something I feel I have to be, not something I want to be or even really am.

I want to talk about how I’m a “successful person.” I have a university degree and completed the coursework for a second, and I worked full-time (or something resembling it) for nearly a decade.

I want to talk about how I have never really felt successful, and how I never feel like I deserve the praise I receive from people for the things I do, even though I know that I do those things well and worked hard to do a good job.

I want to talk about how there’s this thing that happens with some disabilities, where the people who have them are expected to just try harder and be like everyone else. We’re expected to learn to pretend that we aren’t the way we are, and there’s an assumption that this pretending won’t naturally take energy and impact our lives in a negative way.

I want to talk about the other thing that happens, where people refuse to claim the word “disability” and insist that they’re just “different.” I want to talk about the disservice this does to those who are truly disabled by the same thing. I want to talk about how this doesn’t help people who don’t have the disability understand what it is and how it affects us.

I want to talk about how focusing on ability is damaging, too, because there are people who struggle with everything, and people who can’t even begin that struggle, and those people are still valuable as people. And because people change over time, and they learn new things, so condemning someone to inability due to how they present as a child is just as bad as expecting someone to do more than they are currently able to do because they did it before so it’s something they can always do.

I want to talk about how the medical model of disability is awful because it assumes that disability is automatically “bad” and needs to be eradicated. I want to talk about how the social model of disability isn’t much better because it assumes that people are really only disabled due to the expectations society has of us.

I want to talk about how everybody is different, and how that means that the solution to a problem that worked for one person isn’t necessarily going to work for the next person, even if they have the exact same diagnosis. Even if they take the exact same medication at the exact same dose.

I want to talk about how changing my environment and my life situation to better suit my brain hasn’t cured my ADHD. About how all those “experts” who say that ADHDers find it easier to focus on things they enjoy and things they’re interested in are full of shit. About how hard I’m working to get my house in order, because I want it to be comfortable and I want to be able to redecorate and I want to be able to finally organize our books and things like that. About how much I hate my medication right now because it’s making me miserable physically due to indigestion, but I can’t stop taking it or I’ll eat everything in the house and regain all the weight I’ve worked so hard to lose over the last few years.

I want to talk about how disability isn’t “bad,” it just is. Like emotions. Emotions aren’t “bad” or “good,” they just are; it’s what you do with them that matters. Disability exists. People legitimately can’t do things because they are disabled. That isn’t a bad thing, unless the things they can’t do are things they want to do for themselves. And that’s when amazing things are invented. That’s how amazing things happen, how great ideas are born, how movements gain momentum.

I want to talk about how we’re encouraged to go to these professionals, and to read books by “experts.” How this is all geared toward “helping” us act like we aren’t disabled, like there isn’t this thing about us that makes us different, that makes it so certain things are incredibly difficult and others are truly impossible. How people who have our disability and achieved “success” are held up as amazing examples we should try to emulate. How those people are sometimes framed as having achieved what they have “in spite of” their disabilities and sometimes framed as having achieved what they have “because of” their disabilities, and that is really confusing and unhelpful for everyone.

I want to talk about all of these things, and probably more.

I might reblog this and expand on some of these points later on. In the meantime, here it is for everyone else to read and respond to, if you like.