A point came up in the comments thread of my post on the Ashley treatment that I wanted to expand on a bit — talking about the developmentally disabled as “angels” of one sort or another. The parents of Ashley X, a girl with profound developmental disabilities, refer to their daughter as a “pillow angel.” and they are by no means alone in using the word “angel” among parents of kids with intellectual and developmental disabilities (I/DD).
There are two versions of this phenomenon, I think. One is how people who don’t have much familiarity with I/DD talk about it – the myth of the happy developmentally disabled child. And the other is parents and other caregivers talk about it.
I am not alone in being irritated when other people assume my child is happy and sweet-natured because he has I/DD. As it happens, he is generally happy and sweet-natured. But that has nothing to do with I/DD; it’s just his temperament. In fact, the majority of people with his Ridiculously Rare syndrome have issues with aggression. And, of course, he’s not always happy and sweet-natured. Sometimes he gets seriously pissed off, like when therapists use hand-over-hand with him. Or jealous when I hold my new baby. If I wake him up early from a nap, he’s a beast all afternoon. To assume that he’s happy all the time denies the full range of his feelings, denies the uniqueness of his temperament, and romanticizes the difficulties he and we face with his disability. Relatedly, he doesn’t “really know” something about goodness that the rest of us miss out on. Of course, there is a particular value in looking at things from his point of view, and I appreciate it. But he’s not better off because he has I/DD.This line of thinking in a way denies that he’s really a person, like the rest of us, who faces some extra difficulties.
With parents and caregivers, it’s something of a different issue. We are, of course, familiar with the full range of our kids’ emotions.
When we first got our kid’s diagnosis, we googled away. There were several parent blogs, most of which referred to their child as an “angel.” We found these deluded and kind of repulsive (and I know a few other parents of kids with I/DD who had a similar revulsion). Now I have much more sympathy for why they write that. But I still think it’s a bit problematic.
They write it because they know that people, on some level, don’t really understand how much they love their kid. And don’t believe anyone really could love their kid. It makes them (and me!) feel defensive when they do, in fact, absolutely adore their kid.
Part of it is also religious, I’m sure. I’m an atheist, and see my son’s condition as random. 1 in tens of thousands get his syndrome, somebody has to be that 1, and it was he. He didn’t win a scratch-off, he got this. If one is religious, one is tempted to read some meaning into the birth of the disabled child. Because if you think the Problem of Evil is tough to explain away, the Problem of Disabled Kids is much harder – you can’t say anything about free will. God’s plan includes making life more difficult for children? Hence another aspect of the temptation, I think, to call our kids angels.
But our kids are not angels. They are people. They have flaws. They make mistakes. I understand how calling them angels is a way of telling the world how much we love them and how grateful we actually are to have them and to communicate that they have brought some goodness in the world. But ultimately, it mislabels them.
When a child with disabilities enters the school system, every year, an IED is prepared, laying out the current situation, where the child could be in a year and how the educational system will go about getting from here to there.
Pity is the most contemptible emotion. Compassion is not pity. Compassion sees a problem, analyses it and does something to better the situation. Pity merely wrings its hands and sublimates, as if it were any solution.
I wish there was another word than disability, dis-ability, as if that child were incapable of anything. Though a child with disabilities might not be capable of some things, who among is is capable of everything? We are all given certain gifts and burdens, we are not equal. We only have each other in life and armed with those gifts, we can bear each others’ burdens. This sharing is the great genius of humanity.
Compassion is not pity.
That’s interesting.
Myself, for many years, I’ve used the terms “care” and “sentiment” in much the same manner.
Caring is an active state that is expressed in action; ie “to care for…”
Sentiment is a passive state, entirely internal.
Just curious what does “IED” stand for in this context? Individual Education Directive?
In our area, it’s IEP, individualized education plan. It’s required by the ADA. It determines what services and accommodations he can receive from the school system for that year (although you can challenge it and get it redone). We are currently undergoing the assessment part of our first IEP. Horrible, horrible.
Oy. Good luck! I’ve been at those meetings on behalf of students (not yet a parent). The battles I’ve had with the committees. I try not to fault them, since they are often trying to divvy up funds and resources that are woefully insufficient for the size of the community they are charged with serving. To the extent possible, I encourage you to keep this in mind if/when you do hit road blocks. It will be frustrating but, by and large, the people involved take their work seriously but are somewhat limited due to forces outside their control.
Thanks for the reminder; I could use it. I’ve heard stories. But our county so far has been great. I’ve gotten every single service I’ve requested for him for EI, all with no family share and in home. All his early intervention therapists say that the new group in charge takes the recommendation from them and from parents really seriously.
That’s great. Things tend to shift when you transition from Health and Family Services (or its equivalent) to the Board of Ed. If you haven’t made that change yet, hopefully it goes as smooth as things have gone thus far!
It is IEP in Oregon as well.
Mary, I don’t know anything about grown-ups. Is there an adult equivalent?
I’m glad you asked (because this is the one area I consider myself knowledgable). Each person in adult services gets an individualized plan that acts as a contract for services, just like the children. For adults in the state of Oregon the plans are called Individual Support Plans (ISP). I could bore you with the details, but I will spare you all.
I really am interested. Every year, the conference for my kid’s syndrome has a talk on transitioning to adulthood. I haven’t yet gone. I want to go well before adulthood, just so I can be thinking about what our future will look like now.
Well, since you asked, professionals in Oregon have identified that trasition planning (which is what we call the process of moving from services for children to services for adults) has not been effective because the planning has begun too late in the person’s life. You can imagine some of the complications that can arise from poor planning in this area. People with I/DD are now staying in high school until they are 21. New rules dictate that adolescents and their support teams will being the transition planning process at 16. This includes vocational and residential aspirations the person may have.
Since Oregon no longer has institutions for people who experience I/DD provider agencies (like mine) are shifting their focus from supporting people who have been through the deistitutionalization process to supporting younger folks who have a more clear vision on how they will exercise their independence. It is a huge shift in training employees, models of support and program development. We realize that young, independent people do not want to take advantage of group homes and sheltered workshops. They want a more typical life. One of the things I love about my job is the creativity that is required to help people figure out what they want to do and how we can make that happen. I have little desire to work with people who say that a person can’t do something they express an interest in.
I don’t know why I didn’t think to mention this earlier, but if anyone is interested in looking for information on the planning process in schools, Helen Sanderson Associates (HSA) is a fantastic resource. They are the UK version of The Learning Community (which is the largest organization in the US for Person Centered Planning). HSA has a great video on how the UK uses person centered reviews in schools.
http://www.youtube.com/watch?v=B64x3v9ZEME&feature=related
Awesome, Mary, thanks! I love having you comment on my I/DD posts!
Just glad to be a part of it. Thanks Rose!
Great post, Rose.
“To assume that he’s happy all the time denies the full range of his feelings, denies the uniqueness of his temperament, and romanticizes the difficulties he and we face with his disability.”
This is something that I tend to see with young children in general, though not to the degree that I see it with children with special needs. To deny the “full range of [their] feelings” and the “uniqueness of [their] temperament” (as you so brilliantly put it) is to deny their humanity. I often have to remind parents that is not only okay but GOOD for children to get angry, frustrated, mad, and sad. They are, after all, human and these are normal, healthy human emotions. I can only imagine how frustrating it must be when it is ramped up in the way that it often is with people (children and adults alike) with special needs.
The context is completely escaping me, but I remember blowing someone’s mind when I described someone with special needs as being sort of mean… I might have even using an explitive. Mind you, their meanness had little-to-nothing to do with their special needs (I suppose I might be underestimating this, as I could imagine the daily frustrations the individual met with leading to a certain harshness to their persona, but his meanness manifested in being overly and deliberately mean at times). The person seem bothered by this for two reasons: first, they seemed to believe that ANY negative characteristic of an individual with special needs must be because of their special needs and, thus, is beyond commentary; second, and probably far more bothersome to me, they couldn’t believe that anyone would ever say anything negative about a person with special needs. It was the patronizing… the whole notion of using “kids’ gloves” to deal with adults who are far more abled than disabled. Yet, unfortunately, that is where so much of our broad sentiment lies with people with special needs… too much focus on the “special needs” and not enough on the “people”.
Totally agree about the typical kids, too. I see that a lot with moms on play dates.
And, yes! Once we can get pissed off at or not like someone with I/DD, we’ve made progress!
Heh… I can see it now… “The more often you call someone with I/DD, the better a friend to that community you are!” I see absolutely NO potential for that going wrong… :-p
(BTW, “I/DD” preferred to “special needs”? My hunch is that the former is a subset of the latter, but I will confess to often being a step behind.)
> I see absolutely NO potential for that going wrong… :-p
Heee! I was just about to type that I just want to be able to say that my kid can be a pain in the ass sometimes, and I looked over and he had snuck around the table and was playing with a power cord. I rest my case.
I’m totally the wrong person to ask, since I still sometimes use “mental retardation” (descriptively, not pejoratively!). But I take it that you’re right, that “special needs” is more inclusive than I/DD (so high functioning autism could fit in). I/DD is what mental retardation used to be, but can be split into intellectual and developmental (although I haven’t seen the split in practice). Parents/caregivers still seem to say mild/moderate/severe/profound, but I gather professionals don’t (they usually talk about degree of needs or care).
Similarly, many would refer to their deceased loved ones with, “He’s in heaven now.”
No matter how religious they might be, none of them want to be the one with their loved one roasting in hell.
There’s a very minor-key version of this about mixed-race kids; whenever I mention that my wife is Korean, the invariable reaction is “Oh, your kids must be gorgeous.” They are, of course, but that’s not why.