We live in a society that promotes “wellness.” While at first this may seem to be a positive and helpful goal, it hasn’t come without consequences. An obsession with wellness creates rigid definitions of beauty, acceptability, and strength. When society values such a narrow view of wellness, instead of being humbled, we are prideful. Instead of being curious and open to wonder, we seek comfort and sameness in relationships.
Where does society's striving for wellness, perfection, and sameness leave those with disabilities?
I was reminded of this question each time I visited a local store or restaurant with Rosie*, one of the core members I lived with in the Cape Breton L’Arche home. Rosie is energetic, active, and loves people. If you were to meet her for the first time, she would offer a firm handshake and perhaps add a kiss on your cheek. In encounters with friends, a quick hello would never be enough, she would want a bear hug! Rosie relishes in interacting with other people. I suspect this is because she has spent most of her life on the margins – going unnoticed, ignored, and walked over.
When I first started taking Rosie on outings, it felt awkward for me. Rosie does not sense other people’s need for “personal space” nor does she understand the discomfort others may feel. I wasn’t sure how others would respond to her enthusiastic greetings or vigorous invitations to engage with her. I didn’t know how to respond. I found myself trying to prevent Rosie from engaging with the customers, or alternatively, tearing her away from the unsuspecting shopper who she had snuck up on.
As Rosie’s caretaker, I was attempting to manage her behavior to ensure that the people she encountered did not feel personally unsafe by her physical overtures. I also admit however, that deep down, I was embarrassed by her gestures.
As a person who is passionate about working and living with those with disabilities, I found myself curious and concerned -- why would I find Rosie’s actions embarrassing? What is wrong or awkward about a person with Down syndrome, autism, or cerebral palsy wanting to greet someone at the corner store?
It struck me that abelist values can sneak up on even those of us who work in the field of disability support as caregivers, or even parents of someone with a disability. We, of all people, should be the ambassadors and advocates. We of all people should not be wishing that Rosie would act like everyone else. Sadly, society’s obsession with wellness, perfection, and sameness subconsciously rubs off on us as well.
A few months ago I attended a brilliant disability theology conference in Belfast, Ireland. I remember one lady sharing with tears in her eyes about how a young man at a grocery store needed her help, but because she was not his caregiver, she basically ignored him and went on with her own shopping. Months later this memory still haunts her, leaving her feeling incredibly guilty. She herself has a child with a disability and has worked in the field professionally, so she couldn’t wrap her mind around her response. She didn’t know what caused her to panic in that moment and to feel awkward and shy.
It can be difficult to know how to relate to someone who is different than we are, but making the attempt is worth the investment. We can all start small. Approach an individual like Rosie as an equal and as an adult, don’t ask questions in patronizing or condescending ways. Instead, say hi. If you suspect help might be needed, ask if you can assist in any way, even if it’s just opening a door or pushing that pesky shopping cart through those cumbersome turnstiles. Don’t change your tone or your vocabulary to sound like you’re addressing a child. Simply ask the person if they need help the same way you might like someone to ask you.
If you go out with someone with like Rosie, it’s important to help Rosie to respect other people’s boundaries while also allowing her to be herself. This will require an additional awareness of the others around you, but don’t jump to any conclusions about how the other person might react. Observe the fellow shopper to see if they are receiving the interaction as a gift or as a burden. If a gift, allow the encounter to naturally unfold. If a burden, intervene thoughtfully and in a manner that doesn’t discount the individual with a disability’s desire to be fully known and recognized. Enter into the tension lovingly and supportively.
Let’s do our part to turn away from ableist fears and awkwardness; because everyone deserves to be heard, received, loved, and able to express themselves.
* Name has been changed to protect privacy.
Deborah-Ruth Ferber is a Field Associate and regular contributor to Opening Doors. She is Pastor for Children and Young Families at Trulls Road Free Methodist Church of Courtice, Ontario.