One of the ways I think we can fight ableism is to talk about people who get it right. People who treat us as human beings, particularly people who are able to work with or around our disabilities and not treat us as our cultural status quo demands they should. We talk a great deal about the way the world gets this wrong, about the way we are shunted aside, about the way people turn our actual physical impediments into societal disability, but we do not often talk about when things actually go RIGHT.
(which is not to say that the discussion of how things go wrong is unimportant or finished – I think both halves of this issue MUST be publically, unceasingly discussed or we will never see change.)
So how do people get it right? The most basic thing is that they remember our humanity and respect our autonomy. To give a very basic example of how respect of autonomy works, the fact that I cannot cut up the potatoes I want for dinner does not mean that I cannot have them done the way I want. If a person who is aiding me to prepare my dinner asks me how I want the potatoes done, and does them the way they ask, then I still have autonomy because I was able to make decisions and direct outcomes. Autonomy is not about being able to do everything for yourself, it is about being able to direct your life and have things done to match your desires, whether or not you are personally doing them.
So who gets it right in my life?
The boyfriend and I have been together for over 2 years. He’s gotten used to the fact that if things need to be lifted, carried, or picked up, I generally can’t do it. That most of the responsibilities in the kitchen will fall to his shoulders, because my hands aren’t up to it. He even carries my purse when we’re out and about without getting goofy about it the way some guys do.
He’s also learned the boundary between things I can sometimes do and things I really shouldn’t do. So he’ll ask me how near to our destination I need the car parked, because some days I can walk 4 blocks and some days I need to be dropped off at the door. He doesn’t ask if I want him to take the bag after I’ve made a purchase, because we both know I shouldn’t be carrying things. It’s a delicate balance, between helping too little and helping too much, and it requires a great deal of attention to maintain.
He does not take advantage of my disability. A great many of people with disabilities, especially women, find themselves abused by their caretakers and/or partners. Any time you have a power imbalance, there is a risk that someone will take advantage of it without regard for the harm they do. I think the boyfriend would be nauseated at the idea of ever taking advantage of me in any way, and for that particular aspect of his character I am very grateful. I know, as a woman with a fairly severe physical disability and an emotional disorder, that I could easily be abused and harmed by a significant other – and some of that has befallen me in the past. But with the boyfriend, I am safe because I am never less than a person, never less than he, in his mind.
My doctor never talks down to me. He remembers that while I am the patient, and much less knowledgable about medicine (not to mention unable to look at places like the inside of my own ears), it is my body he is treating. When there are treatment options, he tells me, and explains why he prefers one direction over another. He does not tell me ‘You Must Do X’, he tells me ‘I think we should do X.’
It may not seem like much, but it’s a world of difference to me. Especially with complex, chronic patients (like yours truely), doctors forget sometimes that they are our advisors and employees, not gods. It’s a level of respect for my right to have input into the decisions about my bodies that is unfortunately rare.
Additionally, I never feel as if I am an illness to him. I am a person, a person he remembers is a law student who loves crafting and art and has a plethora of hobbies. It does not matter whether I am seeing him for a new issue (like my ear infection) or a chronic issues (like my back), he listens well and considers how my many medical conditions could be interacting with the issue we’re discussing. He does not grow frustrated with me because of the way my body reacts, nor am I ever abused for not being able enough or healed enough after his intervention. To my doctor, I am a patient he helps to be healthier, not a lump of flesh in need of his fixes and treatments.
My Personal Care Assistant
My personal care assistant, Nikki, has been with me for 15 months now. The relationship between a personal care assistant and a client can be very difficult to navigate. In most cases, a personal care assistant is responsible for a lot of taking care of the home and the body of a person with disabilities. There are a great many landmines that show up in the relationship between a PCA and a client.
My PCA does things my way, even if she’d prefer to do them a different way. Yeah, she thinks it’s a little funny how obsessive I am about cross-contamination, but she’s respectful about it and keeps my kitchen safe and clean. She remembers how insistant I am about having my books organized by author and series, so that I can quickly find what I’m looking for. She doesn’t complain about the messes I end up making and not being able to clean up because of my disability. When approaching things she doesn’t know the answer to, like how I want things cut up for dinner or where a new item should go, she doesn’t just decide for herself and hang me with the consequences if I don’t like it – she asks me, and she does what I’ve directed.
She also does not treat me as a paycheck. I know that some PCAs get into this industry because they just need a job and someone to pay them. Nikki actually cares about me as a human being, and we joke about our significant others, the state of the world, our neighbors, and so on. She does not lie to me. She does not steal from me. She contacts me if she is going to be late or if she cannot come so that I can get someone else to take care of me. She does not refuse to do things I request that are part of her job (and actually, is willing to go pretty far outside of her actual job requirements if I ask for help). She does what I request, when I request it. She does not make me feel like a burden. She does not use her power over me to harm me in any way.
All this may seem like things you would assume to be true about someone in the service industry, but I can assure you that I have known of PCAs who violate all of these trusts and more. Me, well, I’ve been lucky, as Nikki and the boyfriend are the only people who have ever worked for me as PCAs, and both of them have the basic respect and decency to remember that I am a human being worthy of dignity and respect. I consider Nikki a friend as well as an employee, and I value her greatly.
To sum this up, there are a great many ways that we as people with disability are vulnerable to abuse. That vulnerability springs in part from our impairments themselves, but mostly from the societal view of us as lesser beings, in much the same way that a woman’s vulnerability springs both from being (on average) less physically strong than a man and from societal ranking of women as less than men. Part of fighting that abuse is talking about it, but another part is talking about relationships that are safe, that do not involve abuse. Healthy relationships. Relationships in which we are equals, in which we are people, in which we can trust.
And so, people of the world, whether you are people with disabilities or people who are ablebodied, I challenge you to think not only on living with ableism, but to think also of times and places where we are do not.