A question that has my mind going round in circles

February 26, 2008 11:53 AM

In working with the adult mentally handicapped, a big 'no-no' nowadays is comparing, treating or considering them as children.

My AskMe request is what the problems/implications are in doing this. Often (to someone who works and lives with them) the mentally handicapped seem to have many similarities/traits in common with children and the relatively recent idea of the importance of the idea of adulthood for the mentally handicapped seems to have a small basis in reality.

What does it mean to call them adults if their behaviour resembles that of children? We see they can decide things for themselves but what does that even mean if they decide they want to eat two main meals in succession and as carers we veto that? The theory and the reality don't seem happy bedfellows...

posted by anonymous to human relations (17 comments total)

I have read (was it in Flowers For Algernon?) a comparison of old age to a second childhood. Maybe this is similarly offensive but it's true that capacity goes down and care needs go up, opposite the earlier aging/maturing process. This actually brings me comfort; I have been a child before and there's no shame in it.

I have a mentally handicapped relative who at age 50 still believes in Santa. She always will. This brings her happiness just as it does a child. Of course she is not a child, but I don't see any harm in acknowledging these similarities. This may turn out to be an unpopular view here.

To specifically answer your question: as a caretaker I suspect you work in a minefield of words. The acceptable and unacceptable words and phrases change over time. I think it's nothing more.
posted by putril at 12:25 PM on February 26

What it means is that they are adults! They might want to watch Full Metal Jacket instead of disney. They have the right to watch porn. They have the right to date or be interested in sex.

If they don't have the capacity to decide their nutrition, or whatever, so be it. The carer deciding that for them doesn't make them any less of an adult. The carer's role in making that choice for the service user - and yes, in many circumstances, the carer is the one that makes such a choice - doesn't make the service user a child, any more than a guide dog guiding a blind person makes the blind person a child. Choosing what and when someone eats dinner is a behaviour that can be associated with child-ness, as is guiding someone - but what's important is the context.

So, you're supporting your service user's nutrition etc, but in the ways the service user can be an adult, let them - and even encourage them!

Good luck.
posted by By The Grace of God at 12:28 PM on February 26 [5 favorites]

well, another issue is maturity...they may only have the intellect of a child but they have the experience of their years.
posted by thinkingwoman at 12:34 PM on February 26

My aunt is extremely high functioning, but mentally retarded (birth injury). She reads at 12th grade level and can add/subtract very long columns of numbers in her head. She makes puns, although it usually takes her about an hour to form the response. Luckily, everyone in my family drops and picks up conversations hours later.

She absolutely cannot make a good decision about how to spend her money or what to eat (should I have a candy bar or dinner? guess what she'll pick, always, left to her own devices?). She cares for her dog perfectly well, including to remember the annual vet trip and to start up heartworm medication again in the spring, but has to be coaxed into taking a daily bath.

Essentially, in some ways, you're right, she seems like a grown-up eight year old. But she's not an eight year old. She knows she's not an eight year old and she can tell when you treat her 20-odd year old nieces and nephews like adults, but treat her like a baby. It makes her feel bad about herself or angry at you. And it should. So don't do it. Treat her like anyone who isn't as worldly, educated or experienced as you. Kindly, respectfully and as her own person. Intervene when it's dangerous.

She knows the difference between it being suggested to her that she not eat a candy bar for dinner because it's the wrong choice and being told she can't because she's-essentially-a big eight year old and can't be trusted to eat right. She knows that sometimes you have junk food for dinner. And she knows you don't have to eat carrots if you don't want to. Why? Because you're an adult and so is she.

She likes people who recognize that you don't ask my mother (with whom she lives) or god forbid *her* mother what she'd like to drink. You ask her. If she checks with her sister or mom to make sure she's made the right decision, you don't thank her for it. You just say, "Yes, you made the right choice. I'm glad you remembered how we talked about having less pop."

It's about respect, not being condescending and accepting that this is an autonomous human being, albeit one who will never live independently. Anything else is demeaning. Explain the boundaries. You're not making good decisions with your spending money on trips to the store, so we have to give you less. Then revisit those restrictions regularly.
posted by crush-onastick at 12:36 PM on February 26 [38 favorites]

i think you're failing to understand a critical distinction here. we treat them as adults because they *are* adults.

if they have the "mental age" of a child, that does not make them adults with the minds of children - that makes them adults with learning disabilities.

the reality is, we don't get to "veto" their choices, no more than they get to veto ours. they have all the exact same rights as anyone else. they have the right to vote, get married, have kids, have jobs... they have all the same human rights as you and i. rights are not allocated by i.q. point.

now, these may or may not be a good idea, and they may need help and support to exercise these rights and make these choices - but that doesn't mean they're not entitled to do so.

so if i get to come home and have two dinners (perhaps not the wisest choice) i can. because i'm an adult.

and so can they.

you only lose your dignity when people stop treating you with any.
posted by wayward vagabond at 12:39 PM on February 26

Agree completely with putril's last paragraph. We only change the names of things because people eventually use them as insults in the schoolyard, so we have to come up with something new. "Mentally retarded" used to be the cool, PC, excellent new word to use, but people started using it as something derogatory so now we have to use different terms such as disabled.

Having worked with the mentally handicapped, I see nothing wrong with dealing with someone as a child if that's what it takes to deal with them, as long as it remains respectful and useful, and not derogatory. Again as putril says, it's a minefield because there are sometimes people who are in pain and denial over their loved one's disabilities, and will do anything to avoid terminology that implies something is wrong with them.

(I once helped mentally handicapped, blind children do some simple braiding of colored ropes. They did nothing but sit there while I put my hands over theirs and lifted their hands through the braiding motion. Later, in a PR brochure, I saw a picture of us with the caption, "(name of student) does some braiding in the art room on a nice afternoon..." I wanted to say, "she did nothing! She just sat there patiently waiting for it to be over! She got nothing out of it and couldn't care less about the colors!" But the picture makes people feel a bit better, or something, by avoiding the reality of the situation.)
posted by Melismata at 12:40 PM on February 26

I think the phrasing refers not to turning them loose to the world, as you would an adult, but recognizing that like an adult, they desire for sex, independence, romantic relationships, and participation in other "adult" activities. Supervise them if they need to be supervised, but allow them to pursue these activities with as little interference as is necessary.
posted by schroedinger at 12:42 PM on February 26 [1 favorite]

Wow. Great question.

I'll answer from what I see happening with my Mom and Sister. Mom is Sister's permanent care provider and appointed legal guardian. As such, Mom has had to go to parenting and other classes geared to the care providers. Sister has occupational and speech therapists. She has two respite workers and a case manager. I'm not sure who else is on her "team."

The team is really geared towards enabling Sister to become the fullest, most participatory adult she can be. (She's in her mid 30's, btw.) One of the mantras is "It is whatever the client (ie Sister) wants."

There are times when what the client wants is in direct conflict with others. If Mom was not Mom, but a professional care provider, she'd not be allowed to intervene except in the cases where it was obvious Sister would end up hurting herself or others. However, since Mom is also the legal guardian and Mom, she still has some ability to intervene.

How does this play out in real life? Let's take a look at Sister's sexuality. Sister dates and has been known to get physically involved. Kissing and touching feels good. She gets that. She's got the drives and responses of a healthy young woman. However, she doesn't have the reasoning ability to a) understand consequences of acting on those drives in the heat of the moment or b) understand how to protect herself from the consequences. If Mom was a different care provider, she'd not be able to intervene and prevent Sister from engaging in sex. Since Mom is Mom, she's able to say that dates must be chaperoned and clothes must be kept on. This is in direct conflict with the "whatever the client wants" mantra. (Yes, I'm grossly simplifying the issues but I think you can get the point.)

There is a lot of tension surrounding these concepts with the reality of the mental capacity of folks like Sister. Unfortunately, what I see happening to Sister and her colleagues is that they are becoming more and more spoiled. Enabling her to make decisions is good. Letting her have her way on everything is not good. Yes, she's of an adult age. Her reasoning ability is not adult. She hears the mantra and thinks "I want this." She sees that she gets her way with everyone except Mom. I am an adult and yet I don't have the freedom to do whatever I want whenever I want that I see my sister now experiencing and expecting. I am limited by my responsibilities in ways she never will be and she will never understand.

Hopefully, in time, there will be more of a balance as we all work to figure out what it really means to say that we want them to be fully participatory adults.
posted by onhazier at 12:45 PM on February 26 [3 favorites]

It also is a bit disingenuous to lump them all in the same category. There are people with DD who are truly like children, of some age, but there are plenty of others who are more like teenagers, or others who have difficulty in some area of cogitation that does not preclude them from most of "normal" life. I work with this population and the fellows I work with would be humiliated, angry and depressed to be treated like children. They all have jobs to varying degrees, some of them have voted, held down relationships, masturbated, watch horror films, smoked, drank, etc. At what point should the law step in and issue blanket edits that all people who do not reach x level of IQ test should be treated as children, and above that they should be adults? It is easier and much more sane, imo, to assume a baseline of adulthood then modify that as needed. There are levels of conservatorship that can be applied to each individual that takes their functional ability into consideration.

I feel your question is way too broad and is unsound.
posted by edgeways at 12:49 PM on February 26

I think that the example you gave of the two main meals is the answer. If I, as an adult, wanted to eat two main meals one after the other, nobody would dream of stopping me. It would not arm me unless I did it everyday and gained a lot of weight.

Why not let a mentally impaired human being make a decision that it is not all that harmful, and let the person live with the consequences? We all know a few non mentally handicapped persons who make all kinds of bad decisions, and we do not interfere with their choices.

Now, a decision that puts the person in immediate or certain danger is another story.
posted by francesca too at 12:55 PM on February 26

My beloved mother-in-law suffers from early onset Alzheimer's Disease. Even though Mr. Adams and I live some 1800 miles away, we venture south several times a year to spend a week or so at the in-laws home to give my father-in-law a bit of a respite. During those times when I care for her I sometimes have to treat her like a child ("Do you need to go to the bathroom?" :::wait too long to ask, and she'll soil herself::: "Eat this." :::pointing to food on her plate, because given the option, she wouldn't eat at all:::) But in other aspects, she still exhibited adult behavior - for example, she loves nothing more than to have someone sit with her while watching TV. She will often babble gibberish unrelated to what we're watching, but if I simply acknowlege her ramblings with some sort of response, it cheers her immensely. I always take care to address her as an adult and refrain from using cutesy nicknames like "sweety" or "honey," since I would've never addressed her thusly back when she was healthy. I realize that my story is strictly anecdotal, but I still think that when a person is chronologically an adult, he or she should still be treated as such whenever possible.
posted by Oriole Adams at 1:27 PM on February 26

Its a while since I worked as a social care worker (n fairly radical settings) but my experience of it is this:

How we see people, and treat them as a consequence of this has a large part to play in how they respond to us. There are no simple correlations between people's mental abilities and their holding and forming opinions and beliefs. During my time in care work I came across the same diversity of political and religious belief, as elsewhere, and the same disinterest or passion. I worked in a residential care setting where we gave residents the ability and right to fully participate in all decisions that affected their lives (excepting medical ones) and even people lacking in the ability to speak were quite capable of participating, voting and understanding the consequences of this, as long as we took into account what their abilities were. Adults are adults and have adult desires and feelings regardless of anything else. Treating them as any other than the adults they will only cause problems somewhere along the line. Nor can we reasonably expect them to learn to take on some of the responsibility for the consequences of their decisions unless we allow them to take them.

Ironically enough the persons I came across who might have most closely fitted the child like description were actually those with no physiologically based handicap at all. They were two old women who had been institutionalised some time in the early part of the last century. Getting the whole story was a little difficult but form what we could piece together one was institutionalised as an unmarried mother, the other by her family for being involved with someone they did not approve of. It was the effects of the long years of institutionalisation, in particular the removal of the ability to take decisions over their life that had left them this way.
posted by tallus at 4:00 PM on February 26

It's difficult because it really depends on the person you are talking about. I'm reading these comments about people with disabilities who can read, joke, understand suggestions and make decisions based on their experience, while my experience working in a home-aid setting has been very different. Most of my clients (who were fully-grown adults) required the use of diapers, had to have food blended lest they choke, wore bibs, preferred Disney movies, and had fits of anger that could best be described by the word "tantrum." When working with people of this level of ability, it is very difficult to avoid the association with children. We would take our clients to the movies and choose children's movies for them, take them to toy stores and pet stores, buy kid's games and activity sets, because these were things our clients generally liked to do. Luckily, as long as you treat them with respect and fairness (which is how I would expect you to treat children and adults of all ability levels), and don't refer to them as children to their guardians or in the reports, it doesn't really matter.
posted by arcticwoman at 5:42 PM on February 26

This is a good question. And there are different right answers for every person.

If there was a rule of thumb, it would be to always talk to people with respect, using an adult tone, no matter what their level of function is. Even children don't like being treated like children, and I don't think anybody suffers from being treated with a little more maturity than their behavior might suggest.

It may feel silly using an adult tone to say, "do you need your diaper changed," or "put down the He-Man Sword and come eat" to 50 year olds, but it hurts no one. You may not be able to give a client the responsibility of an adult, but you need to give them the respect of one.

We can't know what is inside someone else's head, doubly so for someone who is mentally challenged. It's a challenge, but it's a challenge to get to know the personality of anyone we meet.

Anecdotal story- my grandfather is a talker. He talks to whoever he can catch. He is completely lucid, but in his advanced age, he does tend to forget to give context to some of his stories. He's also slightly deaf. So the result is that you have to interrupt him and you have to do it loudly. When he was in the hospital recently, all but a few caretakers talked to him like he was five. "DO YOU WANT A COOKIE?" or "WE'RE GOING TO GO DOWNSTAIRS TO TAKE SOME PICTURES OF YOUR BELLY. DO YOU HAVE TO PEE?" It was humiliating.

My point is, they didn't take the time to pay an ounce of attention. They just saw an 80 year old talking about Commies, and assumed he was completely out of tough with reality.
posted by gjc at 8:24 PM on February 26

I think the trouble with treating mentally handicapped adults like children is that we typically don't treat children like people either. They are people, albeit people with very different minds and priorities than ours. That difference doesn't justify our disrespecting or disregarding the reality of their goals, perceptions, self-awareness, or innate freedom of will, any more than that would be justified by their coming from another culture. Even the fact that they cannot assume every responsibility that you can does not justify it. But it's often what we do, because most people (me included) are really not very good at real, unscripted interaction with people whose minds are genuinely different from ours.

On a more practical level, "Motherese" (high pitch, exaggerated pitch contours, extended vowels, simple grammar, diminutives, and lots of repetition) is freakin' annoying if you've already acquired the phonology and a working vocabulary of the language. Which is to say, most kids older than 4 hate it too. But it seems to be instinctive whenever we find that someone can't cope with our full-on, high-speed, coarticulated, thinking-on-the-fly natural speech. Fortunately, you can learn to avoid it, to simplify and structure without condescending. Just takes practice.
posted by eritain at 10:04 PM on February 26 [1 favorite]

Well, my experience with my nieces and nephew, who are all about the same age (17-19) and all with varying levels of ADHD and learning disabilities in addition to some emotional syndrome issues, is that treating them as adults is more about expectations. My mother (their custodial grandmother) has had it pointed out to her (as a social worker) that brain maturity can come later -- that is, after age 25 or so they may settle down a bit. Right now, the sisters especially are prone to acting like 8-to-12 year olds when they're together, pouting to get their way, fighting to gain attention, and other types of juvenile, manipulative things that most adolescents have long since graduated from.

I'm nowhere near 100% successful, but I try to say as often as I can that I expect them to act their age and call them on childish behaviors. In a few cases I am probably doing so unfairly, because they can't help themselves. But for the most part I think they're capable of getting the message, even if it isn't immediately reflected in their behavior. This sets the stage for down the road when they are more capable. I don't think it helps to just assume, as my father unfortunately does, that they won't or can't change. Maybe he just doesn't want the stress of the fight, and it's hard to blame him, but even the few chores they are capable of such as laundry are ones he is beginning to stop demanding from them. I would rather give them more responsibilities, even if they can't perform at the level I would like -- hanging the clothes the right way, shoveling the driveway neatly instead of randomly -- because it sets the future expectation for them of taking on more independence and responsibility.

We see they can decide things for themselves but what does that even mean if they decide they want to eat two main meals in succession and as carers we veto that?

I think you may want to read some of the Love and Logic materials. Basically, as a carer you have the greater responsibility, and you have the advantage of thinking ahead or around the person's limitations. It is important to give them choices so they can start using the evaluation faculties they have, but you can control the choices. The classic example from the L&L program is the son who wants to play the radio as loud as he wants while being driven to school. The parent gives him the option of controlling the volume or controlling the station. Guess which one he picks? And the mere fact of being given the choice within the adult's constraints reinforces the idea that there are constraints, and that he's capable of choices. This reduces the fighting. If I could do this sort of thing more often I believe the situation would be much happier.
posted by dhartung at 10:20 PM on February 26 [1 favorite]

Children are actually subjected to a great deal of discipline. We don't know who they're going to become so we give them opportunities, we make them work and develop themselves, we instill a sense of honor and ethics and values, we dole out punishment in the hope that they will learn the right way to behave.

Developmentally disabled adults may behave like the children who haven't learned any better, but they have already reached a plateau in their ability to develop and learn further. We know what they have become; we learn their limits as they mature into adulthood. It doesn't make sense to impose rigid discipline on them in the hope that they will develop further into the responsible, self-sufficient people we'd like them to become. That's not going to happen.

It is difficult enough for the developmentally disabled to live in our world. To my mind, it is important to take measures to assure them self-direction insofar as they are able to do it safely; to treat them like valued members of family, community and society; and to allow them a chance at self-worth and dignity. To do otherwise seems needlessly cruel to me.

This means that, as we do for children who grow up, at some point we have to lay off the developmentally disabled and let them express the fullness of the adult person they have become, for better or for worse.
posted by ikkyu2 at 10:39 PM on February 27