A Dance of Assumptions

When I meet someone new and have a longer time together than a nod and a smile, it feels like a dance of assumptions, teaching, and entry into a new place. Some people see my wheelchair and hear my voice (I have “impaired speech,” or put differently, an accent that takes patience to understand) and label me as having intellectual disabilities as well as physical ones.

I strongly believe that people with intellectual disabilities must be treated with the same respect and dignity everybody deserves as beloved children of God. And it makes me feel so uneasy that I often tell people about my education and my position as an ordained minister, to help the conversation switch tones. Usually, unfortunately, the person I’m interacting with can then listen more readily (I do need to work on this approach I use – that might be a another blog). 

Even so, the assumptions still can continue. And yes, assumptions do go both ways. Recently, I had a conversation with a church member who asked, “How long have you suffered with your disability?” I immediately replied, “I have lived with my Cerebral Palsy since birth.” I thought my emphasized word choice, “lived” would give the message that I do not see my life with my disability as a life of suffering.

However, in our brief conversation, the person used the word “suffering” in reference to my disability a few more times. While he was assuming that my disability brings suffering to my life, I was assuming the person had a limited worldview and a great deal of power and privilege. I’m not sure how he left the conversation feeling, but I left the conversation feeling both deflated and ready to move onto the next conversation.

Later I reflected again on the labels and emotions we place on people out of our own assumptions that are informed, or uninformed, by the society and church around us. As I understand it, each individual and their families need to choose what words describe their experience and their identity. Families and caregivers sometimes need to speak with and on behalf of their loved ones with disabilities.  I know my mother has done this when I have been too upset or unable to say, and I know others who are nonverbal have had similar experiences.

There is power in our ability to name how we are impacted by a situation or experience, which may be contrary to the assumptions people hold. I have said it before and will say it again, I am who I am because of my Cerebral Palsy. When I am in public, serving in ministry, studying in seminary, I hope people witness how I live, serve, teach, and love with my CP, and not despite it.

It irks me, too, when people say that they can “look past the wheelchair/disability” because it is an integral part of who I am. It is also true that I face discrimination and barriers as a woman living with a disability. Those barriers are a result of society’s priorities and human ranking of power and privileges.

My experience with my disability is not a universal phenomenon. Some members of the “disabled community” have been intentional about reclaiming identities such as “crippled,” “disabled,” “handicapped,” and so on.  Likewise, some people with disabilities choose to use words like “suffering,” and “affliction” to describe their relationship with their disability.

Similarly, in our work with Safe Church Ministry, we are very clear in referring to “people who have experienced or are experiencing abuse.” They are the ones who will define how they relate to their experience, and how it affects their identity. Especially in this era of #MeToo, the conversation about using the labels of “survivor” or “victim” continues (for further conversation on these words, read this article from The New York Times).  

We believe experiences and their impact on people vary, and it is important, especially for those who have had the experience of their voice and story being discounted, to make space for people to share how that experience of abuse has, and continues, to impact them.And I know that these experiences extend to people with other marginalized identities (racialized, indigenous, older people, LGBTQ folks, and so on).

These musings and conversations about suffering led me to scripture, to the book of Exodus when God said to Moses, “I am who I am,” to the book of John when Jesus uses seven “I am” statements to describe himself and his ministry, and to the story of the man born blind in John 9 when he tells the community and the leaders that he is the same man. There are many other examples, underlining the importance of naming who you are and how your experiences have shaped you. As Christians, we believe it is important to name whose we are, and how God’s love for us continues to shape our understanding of ourselves.

Here are some actions to consider if you’re the person who is being given a label you disagree with:

• Determine if you feel safe enough and strong enough to engage in dialogue.
• Describe your experience and identity in your own words.
• Offer feedback, “When I hear [this], I feel [this]”, either in the moment or at a later time.
• Know that it is your story to share and it is okay not to share.
• Find people to talk with about similar struggles – remember you are not alone.
• Understand that you have a part to play in education, awareness, and transformation, but you are not solely responsible – it is okay to not respond, especially if and when safety is a concern.
• Remember you are a beloved child of God with inherent dignity, as is the person you are interacting with.

Here are some actions to consider if you’re the person who is being challenged because of the words you use to describe another:

• Listen! Listen carefully to the words people use to describe themselves and their experiences.
• Be curious and ask why they use the words that they use. “I’m curious, why…” Then listen!  And be curious about why you chose to use the words that you use. Curiosity will be difficult without humility and a willingness to learn.
• Do not demand answers, be okay if/when people choose not to share.
• Read, reflect, pray, engage in conversation with others about the impact of the language we use.
• Consider what assumptions they might make about you and how that impacts the conversation and the relationship.
• Remember you are a beloved child of God with inherent dignity, as is the person you are interacting with.