I am the mother of five children, three have disabilities. I am tired. I imagine many parents of children with disabilities may feel tired. However, it is important to know that I am not tired because my children have disabilities. Nor am I tired from running around to therapies or because of the care they need. In many ways, raising my children is no different than raising any other children. Of course it takes work. Parenting involves many sleepless nights, understanding, empathy, and respect; all of which take work. So yes, that stuff makes me feel tired but no more tired than any other parent. And like many parents, the rewards found in tiny smiles and whispered thank yous, makes it all worth it. What makes me tired is constantly having to fight.
There are two words that if the world understood, could reduce my exhaustion and my need to fight. Understanding these words could transform the way you see the world. If you really understood these words you might want to fight too, and the more people begin to fight, the less we all have to and then the world starts to shift.
The first of these words is ABLEISM. I am embarrassed to admit that I did know this word until I found out my youngest daughter had Down syndrome. Ableism is the discrimination of bodies with disabilities by able bodied people. Like racism, sexism, and homophobia, ableism infiltrates all levels of our society from schools to medical care. My youngest child is three and I already worry about school. I have already had to make the choice to send her to a private preschool because the public preschool in my community does not offer full inclusion. I worry that when she’s five, she will not be able to attend her neighborhood schools. I worry that I will have to be subjected to comments from parents who do not think she belongs in “their” school. I worry that if she should become ill, the doctor will dismiss us because she has Down syndrome. I worry about her adulthood. Will she find a fulfilling job? Will she be able to get married? Will people treat her like part of her community? Ableism manifests in such a way that things many parents take for granted become enormous worries. Often able-bodied privilege makes people in my everyday life avoid seeing their own ableism which makes these conversations fraught and difficult. I’m often told I’m imagining things. That full inclusion is an unrealistic goal.
Ableism is insidious. It manifests in large systemic was like the ones mentioned above but It also peeks out in our everyday language. We drop the words “retard,” “idiot,” “moron” with little regard. We call people who are anti-social “autistic”. Ableism is present when a comedian can say he felt like he had Down syndrome because he smoked pot and couldn’t speak. I am often surprised at how much people want to hold onto these hurtful words. When I ask them to not use the R word because it hurts my daughter, I am rarely heard without having to go through a now memorized argument of why that word refers to my daughter even when they think they do not mean her at all. Ableism is having to explain that these words came from actual diagnostic words used to signify people with intellectual and developmental disabilities. I have to point out how when people use the words, it is never in a way that gives value to things; instead people use those words to devalue people and ideas. When we call someone or something the “r word” we are not making a positive comparison. And unfortunately continues to be used to denote people with intellectual disabilities. It is meant to conjure an image and it may be an image of someone who looks like my daughter. Words wound. They terrorize. They signify.
My second word is actually a phrase, “body terrorism.” People often think “don’t be so dramatic” when they read these words. Terrorism is a scary word we use to conjure images of physical violence, bombs, and guns. It’s a word that should make us shiver. And thus it the exact right word to attach to the kind of shaming and violence inflicted on bodies that display disabilities and other difference. When my baby turned two months old, I read the story of Ethan Saylor. Saylor, a 25 year old young man, refused to give up his seat in a movie theater and two deputies moonlighting as security guards, restrained him in such a way that he was killed. I held my tiny infant and sobbed while reading his story because like my daughter, Saylor had Down syndrome. He is one of many victims. Police assaulted Robert Martinez after the young man didn’t answer their questions. Autistic childrenare too often murdered by their parents: London McCabe, Robert Robinson. The list is too long. My children’s very bodies are in danger because they are different. They are more likely to be raped. They are more likely to be homeless. They are more likely to be harassed or killed by the police. They are more likely to be institutionalized. Their bodies are the front line of a war against difference. A war against those deemed useless and disposable by much of society.
Coupled with the physical danger my children face, there is also the damage done to their minds and spirits as a result of the words mentioned above; the piling on of words that seek to demean a person. Able bodied privilege writes stories of heroism and compassion as tales of pity; asking a kid with a disability to the prom should not be a headline to a news article. Being told that you succeeded despite having Down syndrome makes an exception of your condition instead of an expectation of competence. All of these things will erode my children’s psyche until they wonder if their only value lies outside their disability; until they are only able to see themselves as valuable for what they are able to do for abled bodied people.
I am tired because every day I read comments about how I should have aborted my youngest child. I read too much about organizations bent on curing Autism rather than working to support Autistic people. I read about the beatings, murders, rapes of children like mine and my heart hurts. Every night I whisper to my children as they lay sleeping, “You are wanted.” I tell them often how valuable they are without cure, without change. But I am tired because I lay awake late at night wondering if my words will be enough. What I want the world to know about parenting a child with a disability is that I need your support. Supporting me looks like letting these words deep inside your heart and mind. You can help me be less tired by joining the Disability Justice movement and helping us fight ableism and body terrorism for people with disabilities. Interested in getting involved? Take a small step by pledging here to end the R word and you can learn more about Ableism here. I promise it will make the world a better place, not just for my children but your children too.
 I do not use person first language when talking about Autism as the wish of that community is for the term Autistic to be used. Please see: Identity First Langauge, http://autisticadvocacy.org/home/about-asan/identity-first-language/.
[Headline Image: a person with long blonde hair and light skin is sitting in a brown rocking chair with an expression of exhaustion on their face while holding a light skinned infant. Both are wearing white.]