Staring and Why it Matters

One of the more common questions I get asked when delivering lectures or motivational speeches is how I feel about people staring at me in public and what advice I have on managing ‘the stare’. The idea of staring and disability has been written about extensively, both within and outside academia, with the common discourse being that it is at best annoying and at worst offensive. I have a slightly different perspective on the subject and thought it was worth sharing here.

How I feel about staring…

Two people starring into each other's eyes
When staring at someone with a strange tuft of hair, look directly into their eye to assert dominance

I can honestly say that the lingering eyes of strangers has never bothered me and staring was not something I really noticed until well into my 20s. I think part of why the staring has never bothered me is I’ve never felt ashamed of who I am–whether by wheel or by leg, I am still Jeff. In my experience, people’s awkward or strange feelings toward me are most often wrapped up in their own conflicting or anxious encounters with bodily fragility. The disabled body becomes a mirror that reflects back an unstable signifier that dredges up fantasies of all the ways the observer’s body could be corrupted or contaminated in their subconscious mind. Seeing a person with a disability can be a destabilizing moment for the nondisabled, which is what makes it such a powerful moment for intervention. These lingering glance can open up an opportunity to inject myself (and my experiences) into someone else’s life — to talk to them about difference and dispel some of the ableist misconceptions about life in a chair. Yes, I am okay. No, I am not mad. Yes, you can be okay too.

In this way, I’ve always felt that staring was a powerful moment for me. I want people to see me, to acknowledge my existence; something that too often is denied to disabled individuals. I want them to see that I am not afraid to be seen. I want them to see that I am proud of who I am and the ways I move through their world. I want them to see that disability is not the end of life but a reminder that life is not as generic as we sometimes imagine. I want them to see the complexities of the human form and consider the ways their own lives are injected with vulnerability, dependency and the vitality of the human form. I want them to see that disability is not something to fear.

The problem, and I think part of the anxiety for disabled people, is that too often staring does not lead to these disruptive moments but merely confirms the prejudiced fantasies that the disabled are sickly creatures cursed to muddle their way through life dependent on the generosity of others. But the moment can be so much more — as an individual, I have the power to influence that perspective through intervention.

Becoming an educator

First world problems meme -- "Leaves house / has to explain to everyone they're not sick or 'hurt' and everything is fine
The struggle is so real

Is it the responsibility of all disabled people to make the nondisabled feel ‘okay’ about their bodily vulnerability? No. I fully appreciate and understand those who want to be able to travel through life without having to hold the hand of the scared and anxious normals. I get (and support) that sometimes (and some people always feel) it is nice to leave the house without putting on your ‘professor’ cap and educating the ignorant masses. I agree that the disabled, as a whole, need not become the totems of human resilience…cursed to roam the surface of the Earth blessing the staring hordes with our precious wisdom.

At the same time, being an ‘educator’ and someone willing to talk and explain is a choice; a choice I willingly make because I believe it’s for the greater good. I believe I can have a positive impact on this world by talking to people and helping them to see the world a bit differently. So I carry on educating. But this does not mean I look down upon or shame those who make a different choice. We all must be who we want to be and feel comfortable being.

Parents who manage staring like a pro…

The other staring related question I am often asked is what parents should do when their children are staring at disabled people. Perhaps the worst way is to scold your child, using phrases like “staring is rude.” While that is certainly true, your child is perhaps encountering disability (or difference more broadly) for one of the first times and if the result is negative (in that they get in trouble) it is fair to assume they will associate those feelings of shame and anger with disability going forward. Effectively, you are teaching your child to ignore the disabled–do not look at them or talk to them. The disabled do not want to be seen. The disabled are ashamed of their bodies. This teaches children that there are people you are allowed to see (or associate) with and others you cannot. The disabled then become the ‘untouchables,’ those who you should not interact with, let alone look at.

Similarly, I think it is equally problematic to send your child over to talk to the disabled person to find out what they’re all about. While I personally have no problem with this, and like showing them the cool things my chair can do, not everyone is comfortable with this situation and, as I said earlier, sometimes you just want to be able to live your life without constantly being stopped to reveal your life story. I also find it frustrated when parents take a knee and deliver “after school special” style speeches to their children about how the disabled are sick or hurt people and their wheelchairs help them get around. These moments isolate and segregate the disabled–it is an emotional moment, a heart-to-heart, which similarly indicates that this is a unique or special situation which children must approach with caution.

A better way to manage these moments is what I saw a young mother do several years ago that stuck with me. In this instance, a young boy noticed me crossing the street and pointed out at me ad said, “Look! Why is that man in a wheelchair?” The mother didn’t scold or yell. In fact, she barely reacted at all, simply nodding and saying “Yep, some people use wheelchairs” and kept on with her day. The boy thought about it for a moment, nodded quietly, and moved on to the next topic of fascination. The answer satisfied the boy’s interest and normalized the experience. This response attacked the root of the child’s curiosity (this seems different) and neutralizes the anxiety (it is normal). I think this is a better way to manage encounters with disability with children as it doesn’t penalize them for being interested but also helps reduce the curiosity by marking the experience routine.

So to the mysterious super mom somewhere out there in London, Ontario: I tip my hat to you!

By Jeffrey Preston

Born with a rare neuromuscular myopathy, Jeff has spent his life dedicated to advocating for himself and others with disabilities. With a PhD in Media Studies from Western University, Jeff's research focuses on the representation of disability in popular and digital culture. Jeff is currently an Assistant Professor of Disability Studies at King's University College @ Western University in London, ON.