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Living With A Disability Is Not A Vacation.

Updated: May 14


This past weekend I was catching up with a girlfriend of mine; a much needed mental health pick-me-up during this pandemic. She and I were discussing disability as I am in the process of working through applying for disability myself.


My friend shared the gripping tale of her close friend, let's call her Katie. Katie's life took a seismic shift several years back when she suffered a traumatic brain injury (TBI) from a fall. In an instant, she transitioned from a full-time working, mountain-adventuring mother to grappling with chronic illness.


Katie applied for disability, only to face rejection. Now, she's in the midst of a grueling appeal process. The invasion of privacy she experienced while advocating for herself in court was nothing short of harrowing. The opposition disability lawyer wasm determined to discredit her case, dug deep into her personal life, scouring her Facebook for ammunition. It was straight out of a movie—family photos, mountain hikes, and even a private blog meant for her eyes only, all laid bare in the courtroom.


But here's the real truth - social media isn't reality.


It's a carefully curated highlight reel, often masking the gritty truth. We've all fallen prey to its illusion - the perfect snapshots that never tell the full story.


In Katie's world, the prosecutor overlooked the daily struggles masked by those mountain hikes. Yes, Katie yearned to reclaim her passion for hiking, but it wasn't a walk in the park. Behind the scenes, it required meticulous planning, endless coordination, and sheer determination. Due to her TBI, even a simple hike demanded days of preparation, frequent breaks, and lengthy recuperation periods.


In Katie's world, what the prosecutor didn't see was just how difficult it was to manage day to day. Katie was a mountaineer prior to disability, she hiked the rocky mountains like a staircase, and when her life turned upside down, her dreams of hiking mountains seemed impossible.


It takes an insane amount of effort for her to plan to do this one activity that helps to lift her soul, in the midst of debilitating chronic illness.




Katie's story struck a chord with me. As someone with dreams of scaling mountains, both literal and metaphorical, I resonated deeply. This past season, my version of 'mountaineering' involved camping with my family. But let me tell you, it was far from a vacation.


Camping is actually incredibly more work when you are sick.


For starters you don't have a dishwasher, or microwave to do the work for you. And you still have to do all the maintenance things like medications, eating healthy, and resting.


When I was out camping this year I spent a lot of time just lying down in our trailer. Sitting upright at the campfire in a chair was too much work.


At times I did hop on my bike to get to the bathroom (because it's easier than walking) and I jumped into any picture I could, because I am often not there for many of them.


Just because someone engages in an activity that you deem 'people with disabilities can't do', doesn't mean they don't deserve disability payment or support.


If we went around telling people with a disability what they can't do, then we would live in a society where we wouldn't have Paralympic Games or Special Olympics!


People with disabilities can engage in all sorts of activities. Physical and mental.

People with disabilities can find new ways to do old tasks. By modifying how they do that task.

People with disabilities can do hard things,

Look at Venus Williams, even after her diagnosis, she went on to play more tennis.


Look at Serena Gomez, who continues to work on heartfelt celebrity projects, even after a Lupus Nephritis diagnosis and kidney transplant.


Or look at Steven Hawking one of the world most brilliant individuals who continued to study, teach, and write given his disability.


People with disabilities possess a remarkable ability to adapt and excel. From finding innovative solutions to everyday challenges to pushing through obstacles with unwavering determination, their resilience knows no bounds.


The point here I am trying to make is the disability is not a vacation.


Living with a disability is hard work.


The last thing a person with any kind of disability needs, is to be told what we can and can't do with a body that is already working against us.


So, let's set the record straight: disability is not a vacation. It's a relentless uphill climb, marked by challenges and triumphs alike.


And what we need most on this journey is not pity, but solidarity. We need allies who will stand beside us, amplifying our voices and advocating for our rights.


If you've faced injustice while navigating the world of disability, I want to hear from you. Let's join forces and rewrite the narrative together. Let's get in touch SjogrensRoadmap@gmail.com















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