“Only one of you can enter the store,” said the grocery store employee. I clenched my husband’s hand, heart racing and quickly muttered, “He’s my guide.” We were standing at the front of a two-block line waiting to enter the store. The employee raised his eyebrow and jokingly said, “Well you can’t hold hands,” to which my husband sternly replied, “We’re not joking, I’m her sighted guide.” It already felt like 100 degrees (37 degrees C) out and I was sweating profusely, unsure if it was heat related or the rush of anxiety. I let go of my husband’s hand and tightly linked my arm with his. “Can we enter?” I quietly asked the employee, who reluctantly nodded yes and let us in. I was thankful this ordeal was over, but it’s far from the only one I’ve had in recent months.
For me, walking into objects and people is part of everyday life. I have Retinitis Pigmentosa (RP), a degenerative eye condition and an invisible disability. I only have central vision. To give you an idea of what I see, rub your eyes and then quickly look through a straw. No one could have prepared me for a world where social-distancing and masks are mandatory.
Imagine trying to social-distance in narrow aisles with no peripheral vision and obstructed central vision. Without the guidance or verbal cues of my husband reading the directional signs, or warning me that I’m about to bump into someone, I’m in for a dangerous experience. I typically get called many things while shopping alone. (I can’t see you beside me waiting to pass in the aisle, so mumbling “moron” will only make both of our days worse.)
This pandemic has forced us all to look at daily life in ways we could never have imagined. We see posts on social media urging us to #BeKind. I believe many of us are trying to be compassionate right now, but as a person with a disability during COVID-19, I've had more than my share of bad experiences too.
My condition has no identifier, so unless I disclose it, you would never know I’m legally blind. I’ve been labelled as “low vision,” “partially sighted,” “central vision," and any other term you can think of. I do not carry an identifying cane, but I do sometimes require the assistance of a sighted guide.
I constantly hear, “Pay attention!” “Do I need to go over the guidelines of social-distancing?” Last but not least: “Are you blind?” Actually, yes I am.
Under normal circumstances, manoeuvring through life with low vision is challenging to say the least. Now add in social-distancing of six feet; one-way aisles and taped floor markings to indicate where we should be standing; having to touch produce to discern freshness; and accidentally standing too close to people because I don’t see them. Cue the nasty looks and unsolicited comments. I constantly hear, “Pay attention!” “Do I need to go over the guidelines of social-distancing?” Last but not least: “Are you blind?” Actually, yes I am. That response leads to a screeching halt in our exchange.
The simple task of grocery shopping brings on a mixed bag of emotions. It’s liberating, terrifying, and exhausting. Although I support social distancing measures, it’s not conducive for people like myself who rely on a sighted guide to assist with daily tasks. And there are plenty of us: According to the Royal National Institute of Blind People (RNIB) as of 2017, there are around 350,000 people on the registers of blind and partially sighted people in the UK. And a further estimated two million are living with sight loss and nearly 14 million people in the UK live with a disability. It’s dangerous and unrealistic to ask someone who is visually impaired to distance themselves six feet from their guide and from others!
Here's what I’ve learned: Always lead with kindness. We need to practice this now more than ever before. I’ve been asked if my blindness is a valid condition. What does that even mean?
My first visit to a COVID-19 assessment centre was jarring. The staff asked my husband to leave, even though I disclosed that he was my sighted guide. I waited outside in the cold for an hour and a half, and I — a scared and disabled patient with no sighted guide — was told “they” would assist me, but that’s not what happened.
Someone — I couldn’t tell who — guided me reluctantly to a room where they pointed to a chair and told me to sit. I couldn't see where the chair was at first, but I managed to carefully scan the room. There was nothing on file to say I have a visual impairment, so once that healthcare worker left the room, she took that knowledge with her. The doctor arrived, introduced himself, and explained how the assessment process works. He stood at the door, keeping the recommended six-foot distance. Afterwards, the physician instructed me to turn the green card outside the room to red, a sign that the space needed sanitising, when exiting. The words “I need assistance” burst from my lips, but it was too late; he was gone. Where was the card exactly? On the wall? The door? After scanning the wall with my limited vision, I managed to find it. I asked for assistance once again, but was met with a brisk, “Wash your hands,” instead. They pointed to what I had to assume was a sanitising station, though I couldn't tell for sure.
Thankfully, a security guard noticed I was confused and yelled out to me, “Straight ahead, follow my voice.” He sounded compassionate and understanding, and for a moment I felt like someone cared. Who knows, perhaps he overheard my husband and I explaining to the nurses behind the plexiglass barrier that I needed assistance? I like to remember it as my moment of comfort in a situation filled with fear.
I could go on with more stories like this one, but let me end it here with a simple message and a plea. These are uncharted waters for us all, and we’re all anxious about the future. However, those of us with disabilities have an extra challenge right now, so please be understanding. If someone asks for assistance, don’t mock them or raise an eyebrow. If someone is standing too close, simply smile and calmly let them know. Not all actions are performed with malice and not all disabilities are visible. So, if you see me in the grocery store standing too close to you, stop and say hello because if you’re waiting for me to notice, I can guarantee you will be waiting a long time.