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 and she shared the story of one of her best friends.
Her friend, we’ll call her Katie, had fallen and suffered a traumatic brain injury (TMI). The incident happened several years ago, and it shook her life overnight.
She went from being a working, full time, mountain adventuring loving mother, to being chronically ill overnight.
Katie had filed for disability and had been denied. She is working on appealing in the court system right now.
My friend explained to me the invasion of privacy that Katie had felt upon working to advocate for herself in the courtroom.
The disability lawyer sitting opposite her, who was trying to throw out her case and get her disability denied, had gone to extreme lengths to try and persuade the room that she was in good health.
To be honest, it was 'just like in the movies'. This lawyer stalked her Facebook page, bringing up family moment after family moment.
They pulled up pictures of some of the mountains she has hiked with friends, while on disability.
What really took Katie down was when the lawyer dug so deep, they found and shared a private blog that she kept just for herself. Her family didn’t know about it, they learned about the blog for the first time in the courtroom. .
This lawyer tried to paint a picture that Katie was a fun loving mountaineer, who has no issues going out into the wild to take advantage of the health system.
And to be honest, if you only looked at the facebook photos (and apparently this secret blog), you might think that.
But here's the truth. social media isn't real life.
People use social media to do just that, paint a picture. Often a perfect picture, and often those pictures don't tell the whole story.
I think anyone who has any online account would agree. Facebook, twitter, instagram, tiktok, all these platforms are used by millions, but it rarely if ever shows the whole truth.
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.
But Katie persisted. She had dreams of hiking again, and it took her months (ok, years really) to get back to a place where she could hike.
Behind the scenes though, there is more. If Katie want's to hike, it take an insane amount of coordination and effort.
Due to the TBI, she can't drive for long periods of time, so she has to pull over to the side of the road and rest or nap on the way.
It takes her days to plan her pack ahead of time, making sure she has enough food, and emergency equipment.
When she is done hiking, she also has to pull over to nap on the way home, and once home, she could spend days in bed recuperating.
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 chronic illness.
When I heard Katie's story I felt a profound amount of sadness and connection with her.
I too have dreams of climbing the mountains I once used to.
In my life, the best I could do this past season was get out camping with my family in the mountains. And even then, it wasn't a vacation.
Camping is actually incredibly more work when you are sick.
For starters you done 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. siting upright at the campfire in a chair was too much work.
At times I did hop on my bike (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 wouldn't live in a society where we wouldn't have Paralympic Games or Special Olympics!
People with disabilities can engage in all sorts of activities.
People with disabilities can find new ways to do old tasks.
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.
The point here I am trying to make is the disability is not a vacation.
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.
We need support, we need understanding, and we need allies.
If you are on disability and have been treated unfairly, I want to hear about it. Please share your story in our online support group.
Wishing everyone Health, Healing and Happiness,
Heather
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