Your child is born with an extra chromosome and receives a diagnosis of Down syndrome, or Trisomy 21.
You enter the school system, and usually around the ripe old age of 5 years, the school wants to do testing and evaluation on your child. This testing includes an I.Q. test. At 5 years old. Yet kids with no disabilities, or special needs, or risk of a developmental
delay enter Kindergarten without having their I.Q. tested and being
Your child is given an I.Q. score and labeled with mental r*tardation (MR) and further labeled within the mild, moderate, or severe range.
Times change and the label of MR changes to mental or intellectual disability, but there are still ranges to attach to that label, to give more of a label.
Then you might live in a state where the school districts place your child in one of three - what they term - programs. (i.e. self-contained classrooms.)
But it can't be labeled just a plain old self-contained, or special education classroom. No, the classroom has to be broken down with labels, too.
The 3 types of programs are based on where your child's I.Q. score falls. The classrooms are called Educable Mentally Delayed (EMD), Trainable Mentally Delayed (TMD), and Profound Mentally Delayed (PMD). If the classrooms are labeled as such what does it say for the students inside those classrooms? Can you imagine your child being labeled as "trainable"? Aren't animals considered trainable? And why "educable"? Why aren't the general education classrooms labeled as "educable"? Aren't all students "educable"? Isn't that why we send our children to schools - to get an education?
At some level, maybe state, they have changed the labels of these classrooms to be "Mild, Moderate, and Severe". Yet everyone still refers to them as "EMD, TMD, PMD" rooms.
If your child doesn't have enough labels yet, society wants to label them on their level of functioning.
They will ask if your child is "high-functioning." I think "High-Functioning Autism" is a diagnosis now. If not official it is at least an acceptable label as I've seen "HFA" in articles.
I've heard mention of high-functioning and low-functioning, but I've never heard of anyone say someone is middle-functioning. Why not? Can't you be in the middle of high- and low-functioning? Why do you have to be either one or the other?
How come people without disabilities or special needs aren't labeled as high- or low-functioning? Isn't there a range of skills amongst that population as well?
Who determines what is high- and low-functioning anyway? What if you're in a wheelchair but have average intelligence? What level of functioning are you then if you have low mobility?
What if you have below-average intelligence but are physically capable of so much, or are gifted in some area of the arts? What level of functioning are you?
What if you have above-average intelligence but have no common sense or people skills? What level of functioning are you?
In this blog post I mentioned how the reporter said, "Garrett (a young man) is very highly functioning for someone with Down syndrome. He
reads at the 3rd grade level and has the cognitive ability of an 8 or 9
"Very highly functioning for someone with Down syndrome." Really? What makes him so high-functioning if he has the cognitive ability of an 8 or 9 year old? What made the reporter say that? And what relevance did it have to the story? What if there are plenty of young adults with Down syndrome who have a cognitive ability older than an 8 or 9 year old? What if his same-age peers with Down syndrome have accomplished more than he has in terms of schooling or independence ... does it make them very, very highly-functioning? Did this reporter have such a low expectations or preconceived notions about people with Down syndrome that he came away with his interactions with Garrett so impressed that he felt the need to label him 'very highly-functioning'?
I've been asked in the past, or had comments made to me, about Kayla being 'high-functioning.' I don't know if she is or not. Based on what? Her I.Q. score? Compared to what? Compared to her typical same-age peers? She does a lot of things they do, but there are a lot of things she doesn't do. Compared to same-age peers who have Down syndrome? Again, she can do things that other kids with Down syndrome her age can't do, and they are able to do things she can't do. There is a wide variety of skills and abilities amongst the Down syndrome population just as there is in the typical population.
Kayla isn't high- or low-functioning. She functions period. She does what she is capable and able to do; sometimes with supports, accommodations and modifications, and sometimes without any supports.
Why do people with disabilities have to continuously be
labeled and have label upon label stacked upon their shoulders? Can't
they just be? Can't they just exist as is without having to fit in to boxes and labels?