Your self-directed employment assistant
Since the age of about four I have used a wheelchair. I was born with a neuromuscular condition that made it impossible for me to walk, or be completely self-sufficient. Though I required total physical assistance, my drive, tenacity, and ability to think for myself has never faltered. That has always been my reality and life, it’s my normal.
Enter onto the scene the idea of Ableism, a term that isn’t as discussed in society I’ve noticed. To be an ableist means that you have prejudices or are discriminatory towards people who aren’t able bodied. Most times it is an internalized bias a person doesn’t even realize they possess, a learned behavior that must be actively unlearned in order to be fully accepting. When you think of a physically disabled person, what do you see? While the answer is different for each person, some common stereotypes are that disabled people are innocent in nature, incapable of having fulfilling romantic relationships, unable to work, cognitively delayed, weak, feeble, and dependent on everyone around them. Another occurrence that happens way too often is when a physically disabled person is praised for being out in public, at their job, out with friends, etc. That type of behavior is generally meant to be harmless, but at what cost? At least for me I have always felt as if the giver of the “goodwill” is extremely condescending and assuming that I am in need of accolades, simply by existing in our world like the rest of the population.
An aspect of ableism that isn’t as discussed is the relationship between an individual and their assistant, whether it’s someone hired to help them or it’s a friend/family member. When you rely solely on another human being to assist you throughout your day, the intricacies of the situation are bound to bring complications. Imagine for a moment that you are waking up one day on the metaphorical wrong side of the bed, for whatever reason. The last thing you want to do is talk to anyone, let alone describe to them how you wish to be assisted, what you want to do, etc. Since you’re human, you may respond to their questions with a tone of aggression on account of your current mood. Depending on your assistant/friend/family members own mood or state of mind, they could react negatively to your own tone and commentary. This could elicit a sense of tension and awkwardness, an outburst, harsh words, or perhaps if you’re fortunate, nothing at all. However, for the individual who requires assistance, they haven’t much choice but to endure the situation in order to use the bathroom, get dressed, eat breakfast, run errands, etc. The point of me detailing this type of interaction is not to showcase right from wrong, but to illustrate the dynamic between an able bodied person and a physically disabled person. The sense of power that is present is unspoken. The able bodied person is there to provide a service, at will, while the physically disabled person is a passive participant, essentially at the mercy of the able bodied person’s time and agenda. Of course there are ways out of unfavorable situations such as when an assistant exhibits inappropriate behavior, but the system so far is designed for the physically disabled individual to be in a position to flatter and submit, any necessary measures to make sure one’s needs are met. As a result, there is often the attitude that an able bodied person who chooses to assist a physically disabled person is saintly, an angel, and selfless. The person who receives the care is expected to be grateful and eternally appreciative for the services and cares that they are given.
From what I have discussed so far it may come off that I’m resentful of the fact that I myself—and others who are physically disabled—utilize the help of others to get me through the day, and ultimately bring me to a place of autonomy. Though that is true sometimes (I’m only human!), the purpose for me bringing up the above scenario was to demonstrate a subtle instance of ableism. Just because a person requires total assistance, does not mean that they are expected to endure situations which compromise their wellbeing and safety in order to achieve autonomy—and nor should choosing to assist someone in such a way give you the agency to determine how the course of their day will go, dependent on how well you are treated, addressed, etc. When someone’s livelihood and what they can accomplish on their own is entirely in the hands of another person, it can quickly enter dangerous territory. Respect is a huge part of any type of relationship, but it’s imperative that it be present within the dynamic between an able bodied person and the physically disabled person they are assisting. This respect should absolutely go both ways, but there should be extra mindfulness in regards to the physically disabled individual being in a vulnerable position.