There are certain things you will do that will be eternally creepy and degrading to anyone in the DD community. One of those things is exercise ‘mental age theory.’ But that’s a really academic sounding term. What is it? It’s doing one of these things:
- Mentioning someone with the mind of an x year old (usually due to brain injury or DD or ID*)
- Mentioning that someone is an x year old in an x year old’s body (usually due to brain injury, DD or ID)
- People with Downs Syndrome, Autism, or Intellectual Disability x (always smile, are always happy, teach their families how to be human, are special angel children, are never grumpy at all ever, have no negative character traits like other humans)
So, why are these things so bad? After all, aren’t some of these things compliments (say, downs syndrome kids always smile and are always happy)?
It’s wrong. No, like, functionally, it’s wrong. It’s irrelevant whether you’re an RN or a CNA or an MD and Have Worked With Disabled People. This isn’t about what you’ve experienced. Just for a minute, I need you to consider why this isn’t about your ideas about disability.
The ADA only got passed in 1990. 22 years ago, rights for people with developmental disabilities weren’t really a…thing. I mean, the crueler asylums had started to be closed and the culture was starting to move toward community integration in that people with DDs lived in their family’s homes rather than in institutions, but civil rights? Not really. And they still aren’t. They really, really aren’t. You might balk at me and then try to find examples but okay, if you want to play the guessing game, I’m afraid I’ve come prepared and done my legwork.
People with autism being denied organ transplants when desperately needed.
Incredibly bad conditions in special education. (A blog post isn’t proof- no, but I don’t have the stomach to do any research beyond that, sorry.) The way the GOP acted and voted about international disability rights just this month.
Oh I’m sorry, do you want me to continue? No? Sufficiently put off, at least a little bit? Okay.
I can’t say this enough – a 20 year old with downs syndrome is not a 5 year old in a 20 year old’s body. No. (Especially true if he has an at least pubescent understanding of sexuality. Come on, people. Dots. Connect them.)
A 34 year old woman with Intellectual Disability is not a 7 year old caught in an adult’s body.
No. Seriously. No. No. These people are adults- or children, depending on their age, with developmental and intellectual difficulties. And no, before you run for the comments section, I’m not just being overly PC.
The brain doesn’t just stop at a certain year and refuse to keep going but it (and the attached person) will have certain difficulties if developmental disabilities are attached. But they’re still people. And it’s inexcusable that I should have to make that statement to defend my argument in….you know…2012, where the ADA has been past for over two decades.
But let’s be clear about what you’re doing when you say someone is a child stuck in an adult’s body, usually based on arbitrary behavior. (He still watches winnie the pooh! He stlll has functioning difficulties. He’s nonverbal! He he hits himself. He’s still in a diaper.) You’re making them a bit less human than you, plus you’re giving them a sentence that they can’t get out of.
The seven year old in a 34 year old’s body has no chance to prove to you that they are, indeed, a 34 year old with a developmental disability but with the opportunity to get their needs vocalized and work on functioning in the manner that suits them best. They won’t, because whenever they do that (and let’s be clear – they probably do) you will see it as uncooperation, rebellion, or an opportunity for restraints.
Banish the thought that he was making his own decision as a 27 year old might sometimes do. It wasn’t your decision and it doesn’t go along with your schedule today, and he’s stubborn, so….restraints.
These are chains you won’t put on people without developmental disabilities or people with brain injuries. You just won’t, because they don’t have the functioning difficulties. But it does hurt all of us. It hurts the people on lower functioning scales who aren’t being listened to when they try to advocate for themselves. It hurts them when you basically choose not to hear them or listen to them because, you remind yourself, they aren’t an adult but a child trapped in an adult’s body.
And you may have surgeries done on them without their consent, force them to get abortions, or make it illegal for them to have sex, and tell yourself that you’re doing the right thing because, after all, they’re a child stuck in an adult’s body and so not really adults at all, but you’re really doing something quite horrendous.
But it makes it easier for me as a care provider if I don’t have to deal with her menstrual cycle or we never have to worry about sexual promiscuity anymore! You’ll say. I’ve been in these circles and I’ve heard these things. But your concern is exactly the problem- you’re worried about you, as a parent, nurse, doctor, sibling, care provider or CNA. You’re not showing a lot of concern for, you know….them.
And these people (whether or not they are exposed to the DD rights movement – chances are, they aren’t) can hear you, they can feel the way you think they’re less than.
It hurts us, too, those of us who are supposed to be more functional, with the assumption that autism comes with the automatic inability to have emotion or conversation and only exists on one functioning level.
But aren’t autistic people supposed to be like…..you wonder. And we sigh. And you’ll catch on. Or you won’t, because the notion of it actually being autistic offends you, because of the picture in your head. So you’ll just forget, and then the next time an autistic thing happens you’ll get really frustrated with us because we don’t function like we’re supposed to. (I’ll only give you so many allowances on ‘I was just joking’ before losing patience- there’s a reason I don’t get it, and yes, I have told you. And yes, autism encompasses a lot more than inability to get sarcasm. Consider, though, that I don’t want to write about all of those things or tell you about them to Prove My Brain Isn’t Normal so you’ll give me some kind of I Approve cookie or something- but they still exist.)
The person you know who you’ve been thinking or saying is ‘just a kid in an adult’s body’ is, you know, actually an adult with developmental difficulties. Presume competence (no really, do this, you’ll be surprised) and treat them like adults, while allowing for difficulties with functioning on whatever level they present.
Trust me, it’s worth it. Because you’ll be less frustrated by their behavior when you see it in the lens of it happening to an adult instead of an unperson or eternal child. Because they will be blessed by being treated as a human being instead of an unperson or an eternal child. (And this WILL help them, whether they’re happy being treated with mental age theory or not.)
Once you realize that downs syndrome children aren’t always happy, and adults with downs syndrome have equal capacity of being jerks sometimes as non-downs people do, you’ll stop being so frustrated with the behaviors of your sibling/patient/child and start enjoying their time, and with downs, well, you might not have a lot of it. (But you might. Things are getting better.)
This is a plea on the basis of human rights. Because this is serious. It has a body count. Open your mind to the possibility that all of the adults around you are equally adult regardless of how they function, okay?
*ID is intellectual disability. It clinically replaces mental retardation as a diagnostic term. No, it doesn’t mean that when you call things retarded you aren’t being a jerk.
This is entirely true, and I’d also add that developmental delay or developmental disability do not mean developmental stagnation. It’s offensive and inaccurate to equate a disabled adult to a child, and it’s also offensive and inaccurate to equate a disabled child’s present level of ability to that of his future adult self.
Yes! Fully functional, comprehending adults or children of their exact age. Yes.
While I do think comparing an adult or older child to a mental age is degrading, it is much easier when taking my kid to a new doctor, the ER, etc. to state that my 9 year old child has the ability to communicate pain and answer questions like a 3 year old. I don’t have the time, patience or energy to go into long explanations and this is a simple, clear-cut way to let the provider know what level of function he/she is dealing with.
Personally I think that’s fine, and there is a grand canyon-esque space between ‘socially they respond at a 3 year old level’ and ‘he has the mind of a three year old.’
Thanks for blogging! As the parent of a 14 year old child that is genetically enhanced with the 21st chromosone-he is a 14 year old teenager that has Downs Syndrome. He has unique challenges but wants to be recognized as a TEENAGER…doesn’t every 14 year old?
Course he does
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Age is so meaningless to me. All it is, is a number. A number that carries a lot of expectations with it. And if I fall out of those expectations by a significant deviation, I will be labeled as either immature or overly mature. It only gets worse when you are considered to be of a particular age.
Physically, I may be 21 years old. If I absolutely had to have a mental age, it would be indefinite. At times, I will behave like a 5-year-old, while at others I could be the wise old lady in the room. But I was also happy to go out for a beer for the very first time. Almost all of my close friends are significantly outside of my age range. My social life fails miserably when I am confined around other 18-22 year olds. That is because I am expected to do a lot of things associated with that age range, and I never match up to it. But frankly, I do not care. I want to enjoy my early twenties, my way.