‘Navigating a world that is not designed for them’
Atlantic Canadians dealing with invisible disabilities face unique struggles
Living as a person with an invisible disability often means having to explain the exact nature of that disability to strangers.
People are often disbelieving the disability exists — and many times the people who question the disability are those who hold the power to grant or deny needed accommodations.
“I’m dyslexic, and I also have degenerative disc disease,” says P.E.I. resident Marcia Carroll, who is also the executive director of the P.E.I. Council of People With Disabilities. She’s both experienced and heard about the challenges people on the Island with invisible disabilities face.
“Some days, you will see me and I am fine, and then I just went through a two-and-ahalf-week period where I was flat on my back.”
Oct. 18-24 was Invisible Disabilities Week in Canada, which aims to raise awareness. While the term ‘invisible disabilities’ is easy enough to define — a physical, mental or neurological condition, invisible from the outside, that impacts a person’s life — the term encompasses a huge range of individual people with complex realities.
“I’m autistic, I have ADHD, I have complex PTSD. I have obsessive compulsive disorder,” lists Quin Poxleitner, a farmer and blogger at www. autisticontherange.ca from Nova Scotia.
“Not yet in the DSM, but pervasive demand avoidance or pathological demand avoidance, they haven’t decided what they’re going to name it, as well as chronic anxiety and insomnia.”
Poxleitner is referring to The Diagnostic and Statistical Manual of Mental Disorders (DSM) — the handbook used by healthcare professionals in much of the world as the authoritative guide to the diagnosis of mental disorders. Poxleitner is succinct, likely due to the number of times they’ve had to repeat the list over the years.
Emily Bessey, a student from Cole Harbour, N.S., currently in her first year at St. Thomas University in New Brunswick, knows how Poxleitner feels. Bessey has been living with an invisible disability since she was a child.
“I have juvenile idiopathic arthritis and fibromyalgia and generalized anxiety disorder,” says Bessey. “I’ve had juvenile arthritis since I was five. Fibromyalgia, the diagnosis, is about a year but I’ve had it for more time, it just took longer to get a diagnosis.”
“It’s easy to read those descriptions and think ‘Oh, OK, I’ve got a handle on this person’s experience.’”
But unless you’ve lived that life, or at least shared it with someone who does, you don’t know, Bessey said.
WORLDS OF EXPERIENCE
“The way that you understand disability, in my opinion, is when you experience it, or you love somebody who experiences it,” explains Caroll.
“And until that happens to you, you really don’t know. I’ve seen it a hundred times in my work, somebody who has said derogatory things about a person with a disability.
“And then something happens to them or somebody they love, and then all of the sudden, the ground shifts under them and they have a complete different understanding of what it’s like to navigate a world that is not designed for you.”
Sometimes, Carroll says, those people go on to be powerful advocates for change because they are so shocked at the lack of support and aren’t yet jaded by a lifetime of fighting for their rights.
Understanding how disability affects another person isn’t just a matter of taking your own existence and layering something new on top of it.
“I explain it to people, it’s like on a scale of one to ten in terms of pain, I live at seven,” says Bessey. “When you’re in that pain all the time, because it’s constant, that makes asking for help even more difficult, in my opinion, because it’s like, well, I always feel this way. So why would I try and bother other people about it?”
Gaining an understanding of one person’s circumstances doesn’t make you an expert in disabilities generally. No two people relate to their disability the same way.
“I’m kind of from the school of, if you’ve met one neurodivergent person, you understand one nerodivergent person, because it is so different for everybody,” says Poxleitner. “Because of autism and ADHD, I have a major, major sensory processing disorder. So everything about my life is interesting and coloured by all of it.”
COLLECTIVE DISBELIEF
Whether it’s government support, work accommodation or assistance with everyday tasks, the lives of people with invisible disabilities can become exercises in convincing people to trust that they are, in fact, experiencing the thing they say they’re experiencing.
“I think the hardest thing with a disability that is invisible is that you are constantly having to quote-unquote ‘prove’ your sickness to people,” says Bessey. “That often makes you feel like you’re not sick enough and that puts a strain on you.”
Self-advocacy becomes an essential skill, and it isn’t always as easy as just standing up for yourself.
Poxleitner has learned that it is important to have a backup.
“When it comes down to medical stuff and having to still continue to prove I’m disabled, I always take a person with me that I trust who knows me because it’s best for me to have a witness. I’m a very easily manipulated person, I just constantly believe everybody has the best intentions.”
Although these coping strategies are essential to navigating the world, that doesn’t make it right that people experience the degree of pushback they do.
“No one should have to push that hard to get what they need to live,” says Bessey. “There’s so many hoops that you have to jump through just to get the bare necessities.”
Through P.E.I. Cofd, Carroll is trying to convince governments and other organizations that this approach is misguided at best, damaging at worst. Often, bureaucratic processes are fixated on preventing non-disabled people from scamming the system. And she’s seen some truly awful things, like people trying to renew parking passes on behalf of dead relatives.
“That’s a terrible thing, but if you’re the type of person to do that, no amount of policing or no program, system, may catch you at that,” she says. “We will not, and should not, develop systems that are punitive at their nature or at their core.
“What we will do is develop systems that are flexible so that they catch as many people as possible but still have an eligibility framework so that the people who really need it can actually use the spaces.”
WAIT TO BE ASKED FOR HELP
The road to hell is paved with good intentions. There is a tendency to infantilize people with disabilities, to try to offer the help we think they need.
There is a way to avoid this, to offer better help, and it’s very simple: ask first.
“A lot of disabled people will not ask, even if we want to, because you don’t want to be that bother to other people,” says Bessey. “So, if you know that somebody is disabled, just asking what it is that you can do for them, and not assuming what they need but asking them.”
Someone with an invisible disability also doesn’t owe you their time. They are living their lives, and while you might be curious, or might want to offer help, Poxleitner has some advice for how to navigate those interactions.
“My biggest thing is that compassion and gentleness and patience are not that difficult,” Poxleitner says, adding that simply being kind can go a long way.
“And I think that would be my advice. If you need somebody’s attention, wave, and wait. Give them a minute, allow them that agency to come into the conversation.”
On an institutional level, Carroll still sees too many decisions being made without disabled individuals at the table. That’s where she says even well-meaning initiatives go astray, providing complicated “solutions” that cost time, money and help nobody.
“That can be remedied so easily by including people with disabilities in the design of the programs and the services that are meant to help them or assist them. And very often that doesn’t happen,” she says.
“People with disabilities... they are absolutely the most innovative and creative people I’ve ever met in my life because they are constantly problem-solving. They’re constantly navigating a world that is not designed for them.”
“… Until that happens to you, you really don’t know. I’ve seen it a hundred times in my work, somebody who has said derogatory things about a person with a disability.” Emily Bessey