parents of disabled kids.

When I was a child, people would often say things to my mother about having a daughter with a disability. They’d pity her, tell her how strong she was, or tell her how great of a mother she was simply for having a daughter with a disability. They knew nothing about her parenting, if she was a “good” parent or not, just that her daughter was in a wheelchair. She played into it every time.

Why does giving birth to or caring for a disabled child equate sainthood?

I’m going to go out on a limb and say this right off the bat:

You are not special for taking care of your disabled child. You’re just a parent, like every other parent.

I’m not denying the fact that having a disabled child often comes with a different set of challenges, accommodations, or care, but I don’t think it’s helpful to congratulate parents for being parents that take care of their children. Every child has their own set of challenges, and different does not mean worse; disabled does not mean worse. It should not be the exception for a parent to take care of their kids. It should not be heroic. In a perfect world, all parents would care for their kids regardless of ability, and I won’t praise you for not neglecting or abusing your child. Regardless, many parents of disabled children are abusive, and I think congratulating parents of disabled children for existing can be harmful.

I’m sure reading that last statement makes you cringe, or get angry, because there’s no way parents of disabled kids are abusive, at least not at large. Their lives are so much harder than average parents, and they mean well. They’re doing the best they can.

It’s true—many parents of disabled children are probably doing the best they can. However, sometimes the best still isn’t good enough when power dynamics come into play.

A caregiver relationship is breeding ground for abuse. Not only do parents have physical power over their disabled children, especially if the disability is severe enough that the child is nonverbal or immobile, but they have all of society on their side. No one will question them as a parent; they can do no wrong. Everyone, from strangers to systems and even other parents, are telling them how wonderful of a parent they are. They support nearly every decision they make without question. Furthermore, ableism is on their side. It’s easy to make choices for your disabled child, remove their consent, abolish their privacy, dignity, and autonomy, because the rest of society often does too. Things that would be considered abusive for many kids are not viewed the same way for disabled kids.

I recently made a post in a support group for parents of children with my type of muscular dystrophy that has over 10,000 members, in which a handful are adults with the same disability themselves. More often than not, I saw parents post graphic photos of their children under the disguise of either asking for help or sharing to help others. While I fully support reaching out to a support group to ask for help or share what has worked for you, a photo of your disabled child with a bloody face, vomit all over them, or mucus coming out of every hole is disrespectful of that child’s dignity and privacy. No one wants a private moment shared for thousands of strangers to see, and frankly, most of society would be appalled if a parent posted such photos of their able bodied child. Unfortunately, exploitation of disabled children is a common act, so it wasn’t questioned.

I finally worked up the courage to ask the group if we can be mindful before posting photos, as the Internet is forever and these images will affect the child’s self image. I explained briefly that they will already have to fight hard enough for their privacy and dignity as is without parents adding to it, and how these acts have affected my self worth personally as an adult who grew up with the same disability as their children. Quite a few adults echoed my feelings on the subject.

I knew when I posted this suggestion that it would not be received well. Anytime I have questioned the parenting of a parent of a disabled child, I have been met with bewilderment, rage, and an entitlement that cannot be broken. I have been insulted, belittled, and attacked by hundreds and hundreds of parents for asking that question alone. They also attacked every other disabled adult who spoke up, claiming that their place as an able bodied parent outweighs those who live with the disability. I’ve found that parents of disabled children often think they have the right to use their child and their story however they see fit, to a fault, even if it rips the child of their autonomy and individuality. This is blatant ableism, and unfortunately, psychological abuse, but these attitudes can lead to much worse.

In my own life, I was faced with more severe abuse from my caregiver. Without going too into detail (because my own privacy matters as well), I was neglected and left without care more often than not. I was physically and verbally abused by my parent, while no one questioned it because my mother was a parent of a disabled child. I would show up to school late every day, severely malnourished and sleep deprived, and no one bat an eye because my mother blamed it on my disability. When I was a teenager I even called CPS myself due to my mother’s drinking, and they closed my case because of my disability. My experience was never placed above my mother’s words. Everyone around me was pitying and praising my mother for parenting me, while behind closed doors she wasn’t a parent at all. In extreme cases, disabled children die because of their caregiver’s neglect or abuse, and it’s often met without repercussion. This is less rare than you may think. In fact, there is an entire website dedicated to tracking filicide of people with disabilities.

While not all abuse leads to death, people with disabilities are up to 80% more likely to be abused in their lifetime. When a survey was conducted by the Spectrum Institute Disability and Abuse Project in 2012, they found that overall a whopping 70% of participants experienced abuse by a caregiver, parent, intimate partner, or even a stranger. Abuse is even more likely with a disabled person who is nonverbal, and these incidents are grossly unreported, thus making the statistics further lacking.

I am not saying that it is always easy to parent a disabled child. In fact, wrapping your head around the fact that your child is living in a world that oppresses them is a heavy weight to bare. Teaching them to navigate a system where their rights are not respected is a deep pain; but in order to not add to the oppression, you have to believe in it. I’ve had countless parents tell me explicitly to stop talking about ableism, because it doesn’t exist; especially not in families. Unfortunately, statistics prove otherwise.

Additionally, many parents deal with hospital stays, near-death experiences, and other traumatic situations that other parents often don’t. For that, I empathize with, but this is not exclusive to disabled children. Any child can have a traumatic issue at any time, and a good parent will deal with it with love, while still respecting their child’s dignity, autonomy, and privacy. Most people don’t view a family going through a rough time as sainthood, just a human experience that is hard to deal with. Most families going through rough times don’t broadcast the private moments to the world, and even if it happens more frequently, that still doesn’t make it okay. I think all in all, a great rule of thumb is to ask yourself if this would be okay to do to an able bodied child.

We’re living in a world with medical advances that are allowing disabled children to live longer and longer. Regardless, “they’re dying” is not a good argument for less dignity. There is no good argument for it. We need to protect the self worth and self image of disabled kids, so that they don’t have as many mental health crises in adulthood (I myself have extreme CPTSD from my parent), and so they can go out into the world as independent adults that know they have a right to be here and be respected, despite what the world may tell them.

I don’t think it’s radical or unreasonable to think that disabled kids should be given the same respect as any human, even down to the nuances. I think if that offends you, you have some inner-work to do.

radical.

“It took many years of vomiting up all the filth I’d been taught about myself, and half-believed, before I was able to walk on the earth as though I had a right to be here.” — James Baldwin

I never thought I was a radical until I started setting boundaries when people acted ableist toward me.

From a young age, I felt deeply that we all should treat each other kindly and with respect. It’s something I believed deep in my soul, even before I had a word for it. I will admit that no one really taught me what respect was, though. I was supposed to respect my elders, authority, rules, and everyone around me, but no one told me how should be respected. No one taught me what it meant to respect myself. Alongside this deep belief for respecting all humans was an endless feeling of confusion. If everyone was to be respected, why was everyone so weird around me?

I have been getting in fights my entire life, and they have always been completely confusing. Although I once was a feisty, confrontational red head (and sometimes still am), these fights weren’t over anything subjective in my head. Someone would say something utterly patronizing to me, and instead of those around me standing up for me, I was met with something along the lines of, “they meant well”. When I told them that I didn’t think that was the case, I was told I was overreacting.

These fights have expanded into the disabled community. If you’ve been my friend for any amount of time, you’ve probably heard me express that most other disabled people hate me. This is for a multitude of reasons, and while I could write an entire article on this topic alone, most recently I shared in a disability support group a mindless comment that a man said to me. “Sweet chair!” he exclaimed. “Gross.” I replied, because I don’t find that to be a compliment. Suddenly, hundreds of disabled people told me that I was a monster for putting down a man that “meant well”. They went as far as to say I turned down a potential partner and that I make all disabled people look bad, because I chose to respect myself even in the smallest acts. The need to please able-bodied people at the expense of self-respect is an internalized ableism that runs deep and wide.

While a microaggression such as a thoughtless comment might not hold as much weight, the same idea has applied for much more severe acts. Without getting into specifics, I was abused throughout my entire childhood by a parent. Similarly, I was abused greatly by a romantic partner in a recent relationship. This past year I have removed myself from these situations entirely, and I’ve rid my life of many other toxic people. I’ve stood up for myself in ways I never thought I’d be capable of, and I was met with the same attitude—as well as full on rage. Even in the most audacious of circumstances. Even in the eyes of abuse. I don’t think the attitude of “they meant well”, the favoring of able-bodied people to a fault, or the outrage at my boundaries is due to the severity of the crime, rather the way in which they view me as a person.

A large part of living with a disability has to do with navigating power dynamics, since most of the world has more physical strength than I do. However, it’s not this strength that is the threat, but the perceived power over me that always is. Historically, disabled people have been one of the most isolated populations. Even now, in the twenty-first century, people are still getting used to seeing disabled out in society, and they have a hard time imagining that we’re just as successful as them, seeing as we live in a capitalistic society where productivity equals worth. We are perceived as unproductive, whether it be conscious or not. Internalized ableism runs so deep that me being disabled alone makes many people uncomfortable.

I still get told that I’m overreacting, but the older I get the more I learn that this is textbook gaslighting. It’s perfectly okay that I’m not okay with patronizing comments, unsolicited and inappropriate questions, or anything that you simply would not say to anyone else. The strange, confusing feeling in my gut is not wrong, but I have been told over and over that it is. I’ve been told that it’s not okay to object, in fact, that boundaries are not something I deserve. I get this doubly as a disabled person who is also a woman. At the end of the day, choosing to make able-bodied people more comfortable over believing my gut has led to a lot of harm to my spirit, and to be quite honest, a lot of abuse. I think even the smallest microgressions are not worth settling for. I think they say a lot about how you view me, and I don’t think those views are safe.

I respect myself a lot these days, though it took a lot of years and a lot of therapy to get here. Any ableism, no matter how slight, isn’t okay with me. Any disrespect isn’t okay with me, despite what society, my peers, and the system have told me my entire life. I am learning that this alone is radical.