Childhood & Disability
I feel like disability in childhood is tragically overlooked.
I remember my experience of having Fibromyalgia as a child fairly vividly. I remember the isolation, the insecurities I felt because I couldn’t do everything other kids could in things like gym class without pain, the shame, the gossip from classmates that I was just faking it to get out of things and stay home.
At times, I stayed home a lot. Staying home wasn’t fun. It made me feel more isolated. But it was what I needed to do.
Disabled children often experience isolation and loneliness, anxiety, and depression. I am sure you could find studies to back that up, but I know it from my own experiences and my understanding of the nature of life with a disability. We also may frequently compare ourselves to our classmates and wonder why we can't do the same things. We may feel like our bodies or minds are inferior due to societal ableism that we end up internalizing. We may be treated like outcasts and become victims of bullying. And unlike adults, we don't know on any level that this isn't our fault at all, because we don't even know what ableism is. I feel like even though ableism hurts me as an adult, at least I know enough about it now to realize it's a problem with society and people who perpetuate ableism, not me. I know deep down there is nothing wrong with me. As a child, I did not know that. And the ableism I experienced, both externally and internally, hurt so much more.
As far as my experience with chronic illness as a child goes, I learned that other kids (and adults) don’t understand that you can have a chronic illness without "looking sick." Accusations that I wasn’t really sick, that I was faking, became common. People don’t get that they can’t see your physical pain or feel your chronic exhaustion. If you’re not bleeding or in a cast, any complaint about your bodily pain is called into suspicion and your every move is scrutinized. If you seem okay one minute, you’re laughing and having fun, then suddenly feel awful and need to rest or go home, they think you’re trying to get out of something. It sounds silly, but one incident of ableism I never really got over was when a middle school friend told others behind my back that she believed I was faking being sick on our DC trip. Another friend on that same trip implied that my requests for accommodations were unreasonable and I didn’t really need them, as if she knew all the details of what I was experiencing. What is it about chronic illness that makes people think they are suddenly experts about everyone else’s health and medical conditions? These may sound like little middle school things, but they hurt a lot, especially at a time I was particularly vulnerable. And they reflect a larger lesson I had to learn about society and chronic illness - that people cannot just believe us and take our word for it when we are in pain.
A couple other comments stand out in my mind. The first is, more or less, another example of someone thinking they were an expert on something they knew nothing about. A friend suggested that maybe I didn't really have Fibromyalgia, but just didn't drink enough water. Which in some way places all the blame for this pain on me and insinuates that if I took better care of myself (by drinking more water), I'd feel better. I've tried that, it doesn't work. And I trust my doctors more than some random person's dismissive comments. Comments like this always catch you off guard. You don't always know what to say and how to stand up for yourself in the moment. You're left feeling like the person isn't on your side, that they don't believe you about your medical condition and experiences with it. Not addressing these feelings can lead to resentment and make it difficult to trust that person, but bringing up past issues you have with something someone said is difficult even for adults. Imagine how hard it is for disabled kids, who aren't taught about how to advocate for themselves when facing ableism, who aren't even actually TAUGHT what ableism is.
I believe some of these issues could be eliminated if children were taught from the very beginning of their schooling about disabilities, from cognitive disabilities to mental illnesses to physical disabilities to chronic illnesses. They should be taught about disabilities and what disabled people experience, about how to not view disabled people in an ableist way, about ableism (and other forms of oppression) and how to not perpetuate it. Disabled people are not rare - the odds are pretty good that children will have classmates with them, family members with them, and even end up with disabilities themselves someday if they don't have them already. In first grade, my classmates were taught sign language to help us learn to communicate with one of our disabled classmates. When I switched schools a year later, I was never taught sign language in a school setting again. Disability issues are so frequently left out of school curriculums and this harms disabled children and allows ableism to thrive in our society due to a combination of both hatred and ignorance.
Those of us who had our disabilities as children have unique perspectives that are often ignored in conversations that paint disability as something that only happens with adulthood and aging. Disabled children are extremely vulnerable to ableism, and we can only help them if we start talking about childhood disability more.