"Oh, You're THAT Person":Utilizing Accommodations as a Young Person Struggling with an Invisible Disability

How do you have the tough conversations about disabilities and accommodations?

A question that crosses my mind regularly is, how can we educate our family, friends, and colleagues about our disease?  How do you go about advocating for you needs?  How do you become a part of a team when your body forces you to play by a different set of rules than everyone else?

It is challenging enough to share with your loved ones about the challenges you face.  It is challenging enough to be your own advocated with doctors.  It is challenging enough to manage a full workload/full schedule, be a member of the family, and manage scheduling and attending the necessary doctors appointments to stay healthy.  However, at the end of the day, it is critical to recognize that it does fall to the individual who is struggling with their disability to educate their peers.

Educating friends and loved ones is one thing.

It is about openness, honesty, and not only showing people the "highlight reel" of life that so commonly floats around on social media.   It is ensuring that they know what you experience on a bad day so that they don't set unrealistic expectations.  So, how do you do that? 

Share with them that you wear earplugs to the bar when you have a migraine because the noise hurts you.  Ask them to help you remember to bring your handicap placard in case you have a fainting episode.  Educate them about your medications, especially if there are any that could impact your driving or functionality.  Finally, let them really see you.  

These struggles are a part of what makes you, you!

If you're open and honest about your experiences, you'll find that the people worth keeping around will validate and honor those experiences.  They'll care about you doing well.  They'll support your healing.

Changing directions, lets talk a little bit about the workplace...

The Americans with Disabilities Act and the Equal Employment Opportunity Commission include specific sections and codes on the protections provided to individuals with a disability in the workplace.  However, these protections do not always help with creating peace in the work environment, and they don't expand the knowledge or understanding of co-workers.

Let me give you some examples of occurrence in the workplace to be prepared for:

One day, the team I worked with arrived at the location for the meeting, and I pulled out my placard to offer the group the opportunity to park in disabled parking.  Immediately after removing the placard from my bag, the newest team member looked over and asks "why do you have that?".  I informed them that I have a disability and was giving it to the driver so that we could park there.  Their response was "oh, you're THAT person". 

It took a moment to process.  Did this really just happen?

I decided this was the time to educate.  Without missing a beat, I did THE thing that makes everyone who says things like this cringe at their own commentary.  I started to show them my reality.  I showed her the scar on my shoulder from the neuro-stimulator that I had implanted.  I adjusted my pant leg so that they could see the kinesio-tape on my knee and ankle that the physical therapist had done for me at my last appointment.

I reminded them that despite the fact that they could not see these things by looking at me, that they did not change the reality of the struggles I face day-to-day.

Remember that this is not a personal attack.  Especially in the case of a new team member who doesn't know you.  This IS an opportunity to engage and educate.

New FAVORITE advocacy meme!!💕

NOTE: In these situations, it is also okay to go and speak with a supervisor about this occurrence.  You DO NOT have to engage if it makes you uncomfortable to do so, or if you are concerned that engaging in this type of conversation could increase your anxiety or trigger an attack.  That IS your supervisor's job.

It can be even more difficult to pick up side jobs and additional shifts when you have a disability.

I requested an assignment change at an extra job that I have due to some issues that I've been struggling with recently.  The email that I received back stated that the position change I requested was denied because those positions were saved for individuals who were "old and infirm".  

I will be honest with you... There is no perfect way to address a response like this when requesting an accommodation.

For me, this response prompted the perfect opportunity to educate.  I recognized that my supervisor probably had no idea what I had been struggling with, despite the fact that my employer said that they had shared the accommodations paperwork that I was required to complete with my supervisor on my contract.  However, based on this response, I realized that they were probably not informed about the severity of my condition.

It is frustrating to realize that the information you needed shared was not.  It is equally important to realize that it is not personal.  

*remember our friend Rafiki from earlier*

I informed the supervisor that I believed in honest and open communication, and then I sent over my accommodation letter and included some details about my condition to help them to understand.  The response I received was very affirming, and filled me with the hope that I would be accommodated.

So far, I've found a few incredible truths in the world of disability accommodations, and I want to share them with you.

1.If you never ask, then the answer is always "no".

I cannot tell you how many times my mom told me this growing up, but it is SO TRUE!  If a loved one, friend or employer doesn't know what you're going through, then they cannot help you in the way you need.  Be vocal, stand up, and advocate for yourself.  It is so critical to having better days!

2."It is better to have it and not need it, then to need it and not have it".

Even if you never need them, accommodations and honesty can provide a safety net for you.  It can also reduce instances of anger or frustration by building understanding and empathy.

3.Nothing is more reaffirming than an understanding supervisor!

Good luck out there fellow warriors!

In Support and Love,

Katelyn Pearson

Disability Accommodations Advocate

@the.technicolor.zebra

@techncolorzebra

the.technicolor.zebra@gmail.com