‘Walk a mile in my shoes’
Don’t be quick to judge people with ‘hidden’ disabilities
Anne Christopher has some blunt advice for people who might have a raised eyebrow or a snide comment if they see her parking in a spot earmarked for the disabled: “Walk a mile in my shoes, and then we will talk.”
The Summerside resident wants to remind people that all disabilities are not obvious at first glance – and she definitely falls into that category.
Christopher has fibromyalgia and sclerosis of the spine. Both conditions leave her in a great deal of pain and make walking any distance painful.
However, neither condition is readily apparent at first glance, and that's resulted in what she calls “being judged” when she parks in a disabled spot, despite the fact she has the required paperwork from the P.E.I. Council of the Disabled.
Christopher, who sits on the council's board, says there is a long list of “hidden” disabilities that also include mental health and conditions like attention deficit hyperactivity disorder (ADHD). While she says progress is being made in terms of people understanding the problem of hidden disabilities, she said there is still a long way to go.
QUESTIONS AND LOOKS
Kurtis Kelly felt the barbs of children growing up with his extreme nearsightedness, but, for the most part, he puts it down to “kids being kids”.
In his adult life, he has seen some stares when he uses his monocular – it essentially works like a set of binoculars except it only has one lens, meaning it looks more like a handheld telescope – but the Charlottetown resident finds that has been more out of curiosity than anything else.
“I’m not ashamed to tell
people about my disability, but I don’t go out of my way to do it either,” he says.
“Since I have had this condition my whole life, I have no frame of reference for having good vision.”
When he was in school, he informed all of his teachers about his condition, asking to be seated near the front of the classroom and provided with copies of anything that was placed on the blackboard or overhead projector.
Christopher, meanwhile, developed fibromyalgia in her mid-20s – she was just recently diagnosed with sclerosis – and adds that it can be much harder for a person to adjust to a disability the later in life they are diagnosed.
“It is not easy to be told you have to adjust your lifestyle. The biggest thing is changing our attitude. You have to accept there are some things you can’t do anymore,” she says. “You have good days and bad days, and what you can accomplish today, you might not be able to do tomorrow. You just have to accept that and do what you can each day.”
She feels fortunate to have an understanding and supportive husband, “who, I think, recognized my fibromyalgia before I did.”
After she was diagnosed, she began attending a support group in Summerside.
“That was such a great thing for me. I was with people who were dealing with the same problems I was – people who understood what I was going through.”
When she was first diagnosed, Christopher was determined to get on with her life and not let her disability define her.
She went back to school and was able to work for eight years before she required an operation on both shoulders that left her in so much pain, she says, “I couldn’t do anything for a year.”
After that, “I started paying more attention to what my body was telling me. I don’t make plans too far in advance and I do what I am able that day. That is all I can do.”
Before she was diagnosed with her spinal injury, she and her husband liked to go out dancing. Christopher could often see people wondering how she could do that and not be able to do other activities, but the reality was that she was often unable to do little else for several days after.
“It was a choice I made because I enjoyed it. I’m sad that with my sclerosis of the spine, my dancing days are likely over.”
Kelly doesn’t have the problem of people wondering why he is parked in a disabled space, as his condition does not allow him to drive, but he uses the monocular to look at things like street signs, traffic signals and the names on buildings.
He isn’t offended if he sees somebody staring and usually makes a joke to put people more at ease.
“Most times, they haven’t seen a monocular before, and they are curious about what it is and why it is needed,” he says.
He has “20-200 vision in my good eye and most people can see things at least 10 times further away than I can.”
Kelly is legally blind and feels grateful he has a monocular to help him, adding he is currently working with the P.E.I. division of the Canadian National Institute for the Blind to help test some hightech eyewear.
He added most people who have a disability – whether it’s “hidden” or not – develop coping mechanisms and strategies to allow them to navigate everyday life.
Christopher agrees, adding, “the biggest thing is attitude. You have to remain positive.”
She says people often feel guilty they are no longer able to do the things they could once accomplish.