There is a charge
For the eyeing of my scars, there is a charge
For the hearing of my heart–
It really goes.
And there is a charge, a very large charge
For a word or a touch
Or a bit of blood
Or a piece of my hair or my clothes.
…I turn and burn.
Do not think I underestimate your great concern.
~Sylvia Plath, Excerpt from Lady Lazarus.
I rode the bus coming home from university, my head deep in a book about Northamptonshirian women brewers in the middle ages (Fast fact: brewing was a wholly female occupation until it became commercially profitable and was taken over by men! Shout out to amazing medievalist Judith M. Bennett for a fascinating history lesson!) It was a lovely moment, and I was in my element: moving with purpose. Reading. Heart full. Feeling well. Happy. Shining.
Suddenly, terrifyingly, I felt a hand on my leg, moving upwards. What was happening? Was this the groping I’d heard was so common on crowded public transport?
Shocked, but indignant, my self-defense training kicked in.
No! STOP. This is MY body and you can’t touch it.
I looked up into the face of…. a grandfatherly man(!) with his hand above my knee.
Oh, I’m sorry my lovely. I hope you don’t mind? I just wanted to see if you could feel.
I wondered, you know, if you’re paralysed, like. You’re so young. Are you? Is that why you’re in the wheelchair?
Though this sort of unwanted attention – intrusive touch, comments – is not oft spoken of, it’s as common as other forms of uncouth stranger-enquiry into the lives of people with disabilities.
Being visibly disabled can be odd ground; you are both invisible and fascinating.
Well-intentioned, non-disabled people have suggested that this is okay. That those asking me obtrusive, personal questions (and even engaging in presumptuous, uninvited touching) are just “interested” in me, my life. That these actions aren’t a big deal, show empathy, even. That perhaps, I should adopt a more laid back attitude. Maybe even try to grow, spiritually, from these unique interactions.
How many women have been told something similar when touched inappropriately? How often are young adults, children and other minorities instructed to “put up” with unasked for attention so as not to buck the status quo?
In thirteen years of living with visible (and invisible) illness, I’ve been privy to thousands of inappropriate touches and comments. Yet the comparisons between the unacceptable harassment of women and those same inappropriate actions toward people with illness and disabilities is not acknowledged or explored in any significant way despite the obvious: They are equally as tasteless. Equally as wrong. It wears away at the sheen of your soul, over time.
My experience on the bus – having the misconception it was all right to touch me, manifest itself further into offensive questions – is an extreme example, but it’s all too familiar. I’ve had strangers poke, grab, hug and stroke me. Had hands placed on my head and been forcibly prayed over. Handed spare change as though I were begging, while out leisurely shopping. I’ve been asked, What’s wrong with you? How did you get like this? Will you ever get better? Will you ever walk again? Will you die? One particularly audacious woman nearly put her head up my skirt, trying to look at my legs upon learning I couldn’t walk. (Really. That happened.)
Pregnant women speak of becoming “public property” as their bellies bloom, and attracting both unsolicited advice and unbelievably personal questions by complete strangers. Do you plan on having a “natural” birth? Let me touch that tummy! How much weight have you gained? How pregnant are you? (Yes, person-in-the-market, let me share my plans for a vaginal delivery, and have you stroke my stomach while you’re at it. NOT.)
I’ve also had well-meaning members of the public give me unasked for medical advice, accuse me of making myself ill (if you’d only drink more water….take pain killers…gain some weight…try this miracle method that cured my Aunt Myrtle…) cry in my arms upon hearing my prognosis, plead with me to recover (as though my wheelchair were voluntary confinement), shout and rage at the unfairness of it all and start lifting my clothes to see my scars. (Really. That’s happened too.)
Misconceptions and judgments are shaped by many things – from pop culture to television, misunderstanding and good old-fashioned human curiosity. But in the end, I think, they are born of fear…and hope.
Thinking about chronic illness can be very scary. For people who don’t live with illness or haven’t experienced it directly, it – and any conversations around it – can be terrifying. Illness may bring up suppressed or long-held anxiety about death, the fragility of the human body. When in the grip of our fears, it may be impossible to see beyond them, to understand how anyone can live well with something that’s so painful to acknowledge.
And hope, exquisite hope! We all love and long for miracles. We need them and the persistent hope for their existence. It’s why the proverbial hero’s journey is so enduring. Why humans flock to similar tales over and over. From Jesus to Harry Potter, the story of the hero overcoming their struggles, and prevailing despite the odds, fills a deep, most beautifully human need.
I’ve nearly died…but, somehow I didn’t. People want to know, why? How? What changed this frightening situation into one of hope?
At a training weekend recently, it happened again: The Guru Phenomenon. Someone mentioned my story and I quickly became the object of unwanted, deep fascination. Suddenly, there was a crowd that wanted to speak to, sit by, get a quiet, private word with me. To hear my story, firsthand and ask, What’s it like? Why do you think this happened? What did you do? What changed? How can I do the same? Can you help my brother/friend/sister? What do you eat? How do you live? Tell me everything. It was “positive,” well-meant attention but unwelcome, nonetheless. The symbolism projected upon me by the crowd – a living example of hope from fear – left me with the sense of being perceived as a curiosity, not a person.
And yet, I was okay.
Whatever your walk or lot in life, we can all relate to feeling “viewed” and misunderstood by others – experiences rooted in judgment and misconception.
Be it through praise, criticism, questioning or uncalled for advice, learning to navigate and manage these feelings, successfully, has been key to my emotional well being. To growing into my best, most content, radiant self.
Here are some of my favourite methods:
Shield – Imagine an energetic shield surrounding you. A cloak, a force field, an egg, a battalion of angels with fiery swords and iridescent rainbow wings – whatever works for you, and fits into your belief system. Visualise enquiries and unwanted thoughts or words bouncing off you. They don’t come near you. Can’t touch you. People may try to impose their world-view, judgments and misconceptions on you, but you needn’t pick them up. You are protected. You are safe. You are in control.
Ignore – Let strangers and those who are not privy to your circumstances or true self say and think what they like. They don’t know you. They aren’t in a position to give an informed opinion about anything to do with you. Try allowing others their misconceptions. Let things roll off your back. It’s freeing. We can’t control what people think of us, even when their perceptions are unfair, or worse, untrue. Unfounded judgments say more about the person holding them than anything, or anyone, else. Take heart in the possibility that those who don’t understand you now may grow to. In the meantime, seek out people who appreciate you and the life you are living. Or, if you’d rather…
Turn the tables…with a question of your own – You don’t have to ignore anything. If you are more comfortable speaking up, do so! Calling someone out on invasive presumptions or inquiries in a non-confrontational, inquisitive way, can be very effective in cultivating a deeper, more welcome understanding of the context at hand. One of my own favourite responses: “why do you ask?”
Are you ever going to walk again?
Why do you ask?
It pulls the person asking back. Makes them stop and reflect on their own motivations. Are they being nosey? Have feelings or experiences they think you may want to hear? Mentally, reassure yourself that it’s okay if you don’t want to share or reply. You’re under no obligation to satisfy anyone’s curiosity, regardless of intention. The person asking you may or may not realize this, however, if a stranger approached them and casually came out with What’s your bra size? How big is your penis? Tell me about your most private, sensitive parts and how they work…I’m just curious, they’d undoubtedly be aghast and not feel the least bit obliged to provide any information whatsoever.
Your body, indeed, everything about you – in whatever state it’s in – is YOURS. And it’s yours alone to share as you see fit.
Craft a response – If specific questions come up often, write a number of replies you are comfortable giving, ones that say exactly what you mean. They may reveal hidden attitudes you were unaware of. Perhaps you do feel obligated to answer strangers’ questions. Is it due to your own feelings about being “different”? How will explaining your situation in the context of others’ “normal” make you feel? Do you feel guilty about taking “more than your fair share” of resources? Stop and ask yourself: Are these beliefs or feelings that are truly yours? Or have you absorbed attitudes along the way from external sources?
Dig. Dig deep.
It can be a valuable exercise in self-awareness, and, in the long run, also give you a great deal more confidence when addressing the judgments, questions and (mis!)conceptions of others.
Take the key messages from your responses and make short, simple sentences that speak your truth. Use them when asked familiar questions, or put in awkward circumstances. Make them succinct, clear and repeatable. Things you can carry, comfortably, mentally, as a script whenever the need arises.
Others are bound to be drawn to – and captivated by – your brilliance! Let them be. Welcome it. And know that by carrying on, brightly, strongly, proudly and with your personal boundaries firmly in place, your shine will continue to grow and light up the world in the process.
Grace Quantock is an award-winning international wellness expert, coach, author, motivational speaker, certified Reiki master and spiritual response therapy practitioner. She is the founder of Healing Boxes CIC and The Phoenix Fire Academy. Currently living – and thriving – with often debilitating illness, she is the real deal and knows, firsthand, the emotional and physical roller coaster that accompanies diagnosis and life struggle. Currently, a resident of Wales, Grace loves reading, gardening and early mornings. She firmly believes that life is meant to be celebrated, and has made it her mission to help others do just that …joyfully and on their own terms. You can follow Grace on Twitter.
Image courtesy of Patrick Sobczak.