Even in the best and most loving relationships, there is inevitable tension, and there is a healthy reason for that. Tension is often related to change, and good relationships simply don’t stand still. Over time, people and their expectations will change. This is particularly true when it comes to the relationship between people with and without disabilities.
A relationship of equals
Employment ads aimed at attracting potential direct support professionals to this field often provide a glimpse of relationship expectations. You might find some commonly used language like “caregiving” or “providing daily needs”, all within an environment that is “compassionate” or “special.” This language is no accident. Employers know that staff commonly enter the direct support workforce expecting to become aides, helpers and caregivers.
Therein lies some tension, because the people with whom they will be working are increasingly likely to have a different sort of relationship in mind; specifically, a relationship of equals. Our language often gives away an embarrassing secret: We have not always thought of people with disabilities as our equal.
Even a genuinely affectionate term like “compassion” connotes a particular relationship, one that is based on sympathy or, dare we say it, pity. That is not an element typical of most friendships. After all, when is the last time you heard, “I’m your friend because I have great compassion for you.” The idea of friends spending time with one another out of pity or moral obligation is disingenuous. In fact, it’s a little weird. Valued relationships involve equitable regard and sharing.
Building a sense of mutuality and shared authority in our work may be one of the most sophisticated but important challenges we take on as support providers, but it is far from a direct support issue alone.
Language of inequality
Many of the best provider agencies in the country are faith-based or other not-for-profit organizations. For them, the tension can often extend to the images and language associated with charitable fundraising. While there has been a solid progression of positive change in this area, the portrayal of people with disabilities as objects of pity continues. Why? It works; or, at least people think it does. But that effectiveness comes at a price.
Whenever one group of people defines another group by way of deficits, the relationship suffers. In his book, Receiving the Gift of Friendship, Dutch theologian, Hans Reinders, writes, “If we strive for inclusion yet continue to deal with deficiencies, then inclusion becomes an act of heroism and will eventually become its own worst enemy.” We are struggling with our newly emerging relationship, partly because we insist on bringing too many elements of the old one along with us.
Interestingly, a common alternative to pity is the practice of elevating the everyday life experiences of people with disabilities to a level of inspiring bravery, visible to anyone with a social media account. It is what journalist and advocate, Stella Young, describes as “inspiration porn,” the practice of objectifying one group of people for the benefit of another. If the message of our culture is that people with disabilities should inspire us, while the aspiration of the average person with a disability is to be an equal and respected citizen, there is a likelihood of tension.
In all this, there is still reason to be hopeful that a healthier and more equal partnership is developing. We can credit the rise of the self advocate voice for that. Still, it is a work in progress, and we still have much to do. Relationships take work, but the payoff is always worth the effort. If relationship tension does nothing else, it invites us to look deeper into the life of another. In doing so, we are offered the gift of seeing ourselves more clearly.
David Morstad is senior fellow at The Bethesda Institute in Watertown, Wis.