Image Description: a hand places disability label cards onto illustrations of children. Still taken from video in post.
Yesterday, on Twitter someone shared this video and asked me for my thoughts.
Video description: A mostly unnarrated video in which a pair of hands puts labels on illustrated jars like jam, peaches, pickles etc. Then the hands start labelling drawings of children with intellectual disability, gifted, autism, learning disability, ADHD, Tourettes, cerebral palsy and Down Syndrome. The video ends telling the viewer that labels are for jars.
I think talking about my feelings on this needs a wider audience than the one on one exchange I had on Twitter.
I actually completely disagree with the entire video. I think it is important to give children the words to understand and describe their own experiences and that it is also important to teach nondisabled children about disability in a normalized way. I have written before about the impact of not being given the tools to talk about my experience as a disabled person.
Part of the problem of the “labels are for jars” argument is that it inextricably links the label with diagnosis and pathology. It completely ignores the possibility that the label can be part of a disabled identity.
It depends on the idea that disability is defined entirely in medical terms. That as soon as you’ve given a diagnosis and maybe described a few of the characteristics of that diagnosis that you’ve put that person into a box.
It completely ignores the reality of the disabled experience. Experience, that may be impacted by a specific diagnosis. An experience that very likely expands well beyond it.
Not giving children the words to understand their lives is not only a disservice, it’s straight up Orwellian.
Ignoring a child’s disability in the false hope that it will reinforce some kind of normalization is just an adoption of doublespeak. If we ignore reality, then maybe people will just stop bullying and discriminating against disabled people.
In reality, it only serves to further ostracize disabled children because it teaches them they are different and talking about that difference is wrong. It’s trying to solve the problem of discrimination by having the disabled child internalize their oppression and keep silent.
It infuriates me when parents or medical professionals recommend that children not be told about their disabilities in some misguided belief that this will gift the child with a normal childhood. It won’t.
Children aren’t waiting for a label before they decide to bully a peer. While language can be used to marginalize it is not the source of the stigma. Erasing language will not erase the oppression.
I grew up without a diagnosis for my autism. The lack of the label did not stop my classmates from bullying me so brutally that I changed schools, only to find new bullies at the next school.
When I finally got my diagnosis it was liberating. Finally, I understood my experiences. I had a frame of reference to understand why I behaved the way I did and why people reacted to me the way they did.
Having that diagnosis earlier wouldn’t have saved me from the bullies but it would have saved me from the added pain of not understanding why.
Not learning to talk about my disabilities also left me at a disadvantage when I was put in situations where acknowledging them was important. Because no one talked about my being disabled, no one considered how to accommodate me. I didn’t even realize that I had the right to be accommodated.
The erasure of language doesn’t just impact disabled kids. It impacts their nondisabled peers. It teaches them that disability is a dirty word and justifies prejudices against people who have been labelled. And kids will be labelled regardless of the omission of diagnosis. It just means that the labels will be insults and slurs.
Kids are best served by being taught accurate, respectful language. Disability should be normalized not by trying to create a false framework where the disabled children are just like their nondisabled peers. This utterly ignores the very real differences in experience.
Normalize disability by acknowledging it and by respecting the realities of disabled kids. Model inclusivity and accommodation. These things cannot be done if you haven’t even taught the children how to express their realities and ask for the things they need.
Teach kids how to talk about disability
Empower disabled kids to understand and talk about their lived experiences.
Teach nondisabled kids that disability isn’t something to be ignored or overlooked.
Language and identity are complicated and children, as they mature and grow may decide for a variety of reasons that they don’t like or identify with a certain label. These language preferences should be respected but I would like to see a world where a label isn’t rejected because a child has internalized stigma and prejudice and believes being associated with it makes them less.
Give kids words. Language empowers. Denying kids words is erasure.
Remember that sometimes words aren’t just labels. Sometimes they are identities.
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crippledscholar 
This was so great to read. I kept snapping as I read!
I agree that we keep having to normalize disability. Disabilities are normal and natural variations on the human experience. People treat disability like a disease – and what person with a disease wants that to become their identity? But disabilities are not harmful – only STIGMA is.
I’m really glad I found your blog, btw. Once I’m working again I’ll be happy to buy you a metaphorical coffee 🙂
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I don’t understand this reluctance to give people the information they need to live their best lives. When I was undiagnosed in my twenties with a health issue, it was more than frustrating going from doctor to doctor (usually being told it was in my head and/or I just needed to relax), and when I finally found one who listened to me, sent me to a specialist who gave me a diagnosis, it was elating. I finally had an answer, so I could act accordingly. Fast forward a decade, and I’m in the same situation. Again, I finally found a doctor who listened to me, ordered tests to support her supposition about my condition.
Labels are not bad. I have depression, anxiety, and a slew of other conditions (that are unfortunately still unconfirmed/undiagnosed because therapy is expensive). Knowing this doesn’t make me a “jar” or any other kind of inanimate object, and it’s nonsensical to pretend that ignorance of my condition or just “talking a walk,” “thinking positively,” or the rage inducing “get over it” will change what I am.
Thank you as always for calling out and speaking out against this kind of thing. Too many people will see this false equivalence and think it’s okay, and it’s incredibly detrimental and damaging.
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Reblogged this on taking a jigsaw to the fangs.
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This is so well-written and echoes many of my (and I’m sure many others’) thoughts!! Thank you!
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But what do you do with a child who rejects their label? My son was not diagnosed with autism until middle school. By then he had formed negative associations with the term and was very upset to hear it used in reference to himself. So we just don’t use a name when we talk to him about accommodations or the difficulties he has. Do you have any suggestions?
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And this is one of the reasons why destigmatizing language early is so important, so that this hopefully stops happening. I would suggest you keep doing what you are doing for now but try and expose him to other autistic people even if it’s just articles and blogs online. Try and expose him to people who don’t stigmatize disability so that hopefully he starts to deconstruct any internalized stigma.
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Introduce him to more Autistic people, particularly Autistic adults like Ari Ne’eman of ASAN. He served as an advisor to former President Obama and was wonderful representative of the autism community. The more he is introduced to those of us who accept our autism and identify as autistic people the more he will come around to understanding and accepting himself.
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It’s really hard being diagnosed at that age, being a teenager is difficult already and the pressures (rejection, being different/watched) can be magnified for a lot of people on the spectrum. Given the reality of stigma/stereotypes in the general population/peers/teachers/etc. I think it can be really off putting to feel pressured to identify with a dx when the rest of the world is telling you it’s a negative thing. I wish that was not case and think we need to do everything to combat that but it’s a lot for a young person to be expected to handle. For me personally, I was overwhelmed by a lot of other things (bullying, academic challenges, isolation) at that age and could just not fully process it yet. I think it’s important to both respect his autonomy and wishes but also continue to work with a focus on strengths and challenges. I wouldn’t avoid the subject but I also would not press the issue if it is distressing. For a lot of us its an identity, identity isn’t static and in cultural identity development models rejection is often the first step on the road to acceptance and integration. I think it’s important to be understanding of how difficult and complex it is for a young person as you help them along. I completely agree with others who suggest providing opportunities to connect with the community and mentors but think it’s also important for him to be involved in the decision making. best of luck to both of you and I think it’s great you are reaching out/thinking in this way!
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I totally agree with this entire piece. I wasn’t diagnosed autistic until college, and even then, my diagnosing psychiatrist didn’t tell me about the diagnosis for two years (it was made over the course of therapy sessions) because she thought it would upset me. Quite the contrary, it was the answer to what I’d been calling “the big mystery” since childhood. I knew there was something different about me, just never had the words to describe my experiences, to know that I wasn’t alone.
It was very similar with my queer asexual identity. It took me many years of worrying that I was broken and alone to discover the asexual community and the freeing language it created to describe marginalized experiences of sexuality that used to go unspoken.
I think that criticizing other people’s use of labels and coining of new terms to describe their experiences and identities is a form of violence. Not only does it prevent people from voicing their experiences and keep them from building community, but it tells people that their experiences are not worth being spoken about or are bad, and belittles and denies them autonomy. It enforces the status quo idea of normal as well.
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