“I never thought I was normal, never tried to be normal.” ~Charles Manson
I spent some time today with a woman I have much respect for. She works with special education kids on the high school level, knows my daughter as well as students with all levels of disabilities. Nice woman, she has been doing this for a while.
The word “normal” came up, I don’t remember why, but I believe in respect to Pearlsky. The next thing I know she says …
Pearlsky is normal.
Excuse me?
Pearlsky is normal, for Pearlsky.
Needless to say, I am not always a big fan of political correctness. I am not sure if that was her point, or she believed the words she was saying, which, to tell you the truth, I did not understand. What could it possibly mean that “Pearlsky is normal for Pearlsky”?
I am sorry, Pearlsky is decidedly not normal. She is not normal in any way. Actually, she is retarded. And crippled. She can’t do a single thing that can remotely be considered “normal.” Furthermore, I don’t want anyone to think that Pearlsky is normal, even for Pearlsky, because then there is no reason to strive for more, since more would be abnormal, no?
There was no response.
Maybe she understands. Maybe not.
Probably not. Does anyone really?
Sigh. I don’t know what any of it means. Unless you want to discuss semantics and the meaning of “is.”
I think everyone has their own kind of normal. And one person’s normal is not necessarily someone else’s normal. Don’t you know when Pearlsky is doing something that is not normal for her? I don’t it’s political correctness.
When I read this, I immediately thought of this. When Zoey was being fitted for her new wheelchair, her PT decided to have the large wheels placed in front. I questioned the decision.The main reason being, because of her stroke, Zoey obviously has the inability to propel it forward with two hands or the cognition to understand the movements needed to do it with one hand. So when I mentioned to her PT that it seemed silly to watch Zoey go in circles if she managed to learn to push the wheel, to which she replied …”But it would be Zoey’s circle.” UH??? Seems to me I don’t see a whole lot of people going about their lives moving in circular motions AND are you trying to telling me that I should be happy that at least my severely disabled child goes in a circle? Have yet to figure that one out.
In fact, I suppose when I think about it, I could have been, more concise in my response here and just dittoed Elizabeth’s comment because I don’t understand any of “this”.
Well, as someone with no kids at all, let alone a kid with severe disabilities, I understand your point (at least I think I do). I may not share your emotional conviction about it, or your passion for the subtleties of individual words, or your sensitivity or pain about the issues — because no one can, really, except perhaps another parent with a just-as-abnormal child — but I think I “get” that you want people to see and understand that Pearlsky is severely disabled, that things are hard for her, that things are hard for you, and that you want people to keep trying to help her gain any “abilities” she can, no matter how hopeless that seems. Did I understand, even if I can’t really “get” it?
It’s pretty clear to me. Just as a LOT of these kinds of statements are.
People say things, lots of things, in a lot of different varieties, in an effort to make the person they are speaking to feel better. They do so out of good intention, they simply do not realize or give enough thought to the statements that are made prior to releasing them and do not consider how the actual flavor they will have when fully cooked.
You did a post about stuff people have said. That post made me think a long time, a long time. Changed me a lot too, or helped to. Helped me to be a little more forgiving about what the Norms say and what they do. As long as they aren’t hurting my son by their actions, I have tried to create just a little larger of a buffer area for commentary.
Besides, I have to…because for every stupid thing someone says to me, I guarantee I say 3-4 things that are stupider.
The only context in which “normal for Pearlsky” makes sense to me is, say, the context in which she’s been ill, or had a bad seizure, or whatever, and is being examined afterwards by a doctor who doesn’t know her well: “Is this (what I’m seeing right now) normal for Pearlsky?” (Or would she normally be more alert, or whatever.) Otherwise it makes no sense at all.
Normalcy is relative. Her comment is useless, but there is a “normal” for Pearlsky, and that “normal” is important as you and others caring for her judge her health, happiness, condition in general by that state of normalcy for her. Certain deviations from that state of normal could me a trip to the doctors.
It can be said that it is normal throughout time and in the present that there are a number of people who are like Pearlsky, and it is part of the human spectrum. Disability activists are stressing that their conditions and conditions like Pearlsky’s are normal, and should be treated as such by society with standards set so that all can get their rights. I don’t argue with that.
Ditto Lila and Cath.
This post, like a few others, is a clear reminder about the importance and power of language and the words we chose …..
Unfortunately too many of us, far too often pay too little attention to the words we choose… so even when things are said with the best of intentions they can still hurt…
Sarah: Yes, you do get it! -SD
I can see her point. I injured my legs in my 20s, badly enough that it’s a minor miracle that I still have two and can walk on them. When someone is concerned with an abnormality in how I move, I can reassure them that it is my normal. That it’s my normal doesn’t stop me from seeking PT and striving for improvements, no matter how improbable.
It’s normal for my wife and I to be nearly broke and in unsatisfying jobs, but we’re bloddy well striving to change that.
Everyone’s normal changes over time. What’s normal for the average 15 year old boy would be deviant behavior in a 50 year old man.
While it wouldn’t make sense to say that Pearlsky is normal in the grander scheme, she does have her own normal. Hopefully her normal in the future will be superior to her normal now.
I find the love of Orwellian New Speak among some parents of “differently abled” children to be equal parts arrogant, annoying and ignorant.
A blogger whose son is severely autistic took extreme umbrage to my comment that while I understood a little bit about what she was going through, having taught in a school for autistic kids, I didn’t know what it’s like being with an a violent, self-harming, non-verbal child 24\7 because my children are normal.
I was chastized for gloating over my kids’ superiority to hers by implying that her child was not normal and therefore unworthy to draw breath,or some such nonsense.upposed to use the term “Neurotypical”
Sorry. My comment published itself before I was finished.
“Neurotypical” is the approved New Speak term, N.T. for short.
I wasn’t bragging about my children but in the blogger’s eyes I had, for failing to use the approved jargon.
I despise jargon. I hate cutesy terms like “trauma mamas,” “forever family,” and “fur babies.”
The last one is what some people call their pets. I happen to love my dog but she is not my baby and I wince whenever someone refers to me as her “mommy.” I am her owner. Sorry if that bothers Alice Walker, but it’s true.
To wind things up, I am disabled, handicapped and deformed. Those are good, honest words to describe my physical condition. I recently went through $125,000 worth to spinal surgery to make me more comfortable (and three inches taller!) But I’m still disabled and I will swat anyone with my cane who starts burbling about God’s will or making lemonade out of lemons.
I love it that your bullshit meter is fully functioning and that you are brave enough to speak the truth.
I think that the new jargon just leaves people confused. I have a friend who came to me for help with understanding what’s going on with her step-son (she figured because I have a disabled son I know things). She said her son is “EMH”. I was stumped until I realized it was the classroom label, and told her that it stands for ‘Educably Mentally Handicapped.’
I hooked her up with a few contacts, but other than that I was no help at all because she called more than a year later to say that she and her fiance were devastated because a new doctor told them their son is mentally retarded. Mentally handicapped meant little to them, and it wasn’t until someone told it like it is that they understood.
They changed the acronyms for my son’s classroom again, and it took me awhile before I got an answer for what they stand for.Oh, and I’ve already forgotten them.
btw, My husband has had multiple back surgeries and refers to himself as a cripple. He has never been one to put pretty labels on things.