This blog post is written by a member of our community, Ivanova Smith, who is an intern at The Arc of King County. She is a self-advocate who is passionate about civil rights and disability history. We welcome other members of the community to share their blog ideas with us.
I hate functioning labels. They do not accurately show what struggles and strengths people with I/DD have and what they have overcome so far. I believe that functioning labels are pointless in regards to autism. As an autistic person I hate it when people immediately assume I am “high functioning” because I have a certain level of ability. When I am given that label it doesn’t acknowledge what I have done to reach this point. The label ignores the hard work I’ve done in order to grow. Instead it assumes that I was always “high functioning” when that is simply not true. I did not learn to speak until I was five years old. I had meltdowns almost every day in school and the teachers didn’t think I could learn how to read. My mother worked with me to learn how to read because the school gave up.
Functioning labels are also problematic in the I/DD community because they separate people with various disabilities from each other. These labels divide us into different boxes, and this makes it hard for us to choose how we want to be supported. It takes away the civil rights of those who are deemed “low functioning’” as if they can’t make their own choices. At the same time, those who are deemed “high functioning” are turned away for needed supports because their IQ is not low enough. This is not good for our community because it separates us and makes it so we can’t be seen as equal.
I experienced the unequal difference myself while in junior high and high school. The special education program separated the “high functioning” students from the “low functioning” students. I was put into the high functioning classes. This made me confused, and I did not get to fully connect with all of my fellow peers. I did not get to unite with my community, and I could not be with the people I related to the most. This separation from my peers also made me more vulnerable to bullying because I did not have any extra protections.
This separation did not provide students with an equal education. One of my friends was put into the “low functioning” class, so he had more protection and support, but his access to educational classes was limited. Because of my label, I had more chances to get into regular academic classes like history, while my friend had fewer choices and options.
Now that I’m out of school, I struggle to get support services because I am deemed “high functioning”. This is challenging because even though I am independent, and I am married, I still do need support. Because I don’t qualify, my husband must provide a lot of additional help. I can’t cook because I have poor depth perception; I have difficulty with the fractions involved in measuring; and I also struggle with the sensory issues related to cooking. I also need support for transportation because I can’t drive. I mostly rely on mass transit or my husband for local travel to work and appointments. And even though I am 26 years old, I still have meltdowns.
Just because I can do something, that does not mean I can do everything. And just because I can do something, that doesn’t mean that everyone with autism can do the same things. People who are deemed, “low functioning” can do some things I can’t do. It has nothing to do with limitation, but more to do with difference in skill. I am a verbal autistic; but I know nonverbal autistics who are smarter than me and who can write better then me. Nonverbal people have been underestimated for a long time and their education has suffered because of it.
The I/DD community needs to come together and say no to functioning labels because it hurts all of us. I get mad at autistics online that throw people with learning/intellectual disabilities under the bus. We are all part of the same community so there is no reason to attack one another. In many ways, I think that functioning labels has actually caused this issue.
As those who know a bit about me are aware, I’m a historian who is passionate about the evolution of our community. Historically, the institutions used functioning labels to group individuals with disabilities together. They used “moron” as what we call high functioning. “Imbecilic” indicated a medium level of functioning, and “idiot” referred to low functioning. I find it funny how people are upset about using the r-word today, but people still use these other words without blame.
In the late 1800s and early 1900s, people with I/DD were labeled this way to dictate where people could live. Morons were still supervised in institutions but they could move more freely and had more work duties; imbeciles were more restricted; and idiots had the most restrictions and least opportunity. Additionally, one of the punishments in institutions was to put morons who broke the rules with the idiots as a form of humiliation. This forced people who were labeled as morons to fear the other people with disabilities who were labeled as imbecilic or idiots. These labels allowed the people in authority to create a pecking order that put us against each other.
This is one of many times in the history of our country that we’ve been divided from each other as a form of oppression. During the Civil War, slaves who had lighter skin were treated differently from slaves with a darker skin pigment. Instead using functioning labels, skin color was used to split the community and make those with darker skin resent those with lighter skin. Functioning labels have divided people with disabilities just as skin color has been used. The labels separate us into groups, thereby making it difficult for certain groups to get services. I think that all people with I/DD should receive the supports they need without the use of a functioning label. Every individual has unique needs, and an assessment of that person should drive service availability. We need to be inclusive for everyone with an I/DD, not just the “high functioning” individuals. We need to value each person equally.
Unfortunately, some people talk about inclusion but still want to separate us based on perceived abilities. When people talk about inclusion, it often sounds like they are only referring to “high functioning” people. They seem to think that self-contained class rooms are still okay for low functioning individuals. These people discriminate based on one’s ability to communicate verbally or on different modes of learning and expression. Inclusion should be for ALL people with I/DD.
Can you imagine a world where I/DD students are fully integrated in classrooms everywhere? I can’t wait until that day comes! It is time to get rid of the labels that support ableism, segregation, and other barriers to equity that truly hurt our community. Real inclusion includes ALL of us.