Unfortunately, this isn’t the first time I have had problems with being called out on my invisible illness. Back in 2014, I received a note on the windshield of my car after I parked in a handicapped parking spot. At that point I was still on crutches, and couldn’t understand why someone would question me. (Read the post here)
I recently traveled to Charlotte for my new job and had a severely embarrassing event occur when I was catching my flight to head home to Pittsburgh. To fully understand the situation, let me give you some background.
Here are the highlights:
- I spent 3.5 years on crutches and, because of my avascular necrosis and psoriatic arthritis, I was unable to walk far distances – even using the crutches.
- Over the past 3.5 years, my pain, fatigue and weakness has prevented me from walking anywhere – in grocery stores, malls, going out with friends, airports. Some days walking up my steps felt like climbing Mt. Everest. Everyday of my life I have to deal with managing my chronic illness. Every, single, day.
- Every time I’ve traveled during that 3.5 years, I had to check my bag and have someone wheel me to my gate.
- I’m currently transitioning back into work having been on disability since June 2012. I’m SO excited to get getting back into working because it’s been mentally rough not working. During this time, my full time job was getting myself better. BUT, because of my disability, my career is going down a whole new path. The PERFECT path for me!! 🙂
- Prior to disability, I traveled every week for my job as I was an IT Consultant. I’m no stranger to airports, in fact, airports are one of my favorite places to be.
- I’m 30 and just want to live a “normal” 30-something life!
So, in the last year I’ve had A LOT of wins. I had my stem cell procedure, I transitioned off of crutches for good, and even made my first trip without crutches in February. Last weekend I traveled to Chicago and walked the whole way, but still checked my bag. For my Charlotte trip, since I was only going for one day, I decided to carry on my bag. I had been doing so well, why not?
This past week has been a crazy one. Sure, I’m doing AWESOME and am controlling my conditions extremely well, but it had been a long week. I traveled to Chicago Friday – Sunday for the HealtheVoices 2016 conferences, Monday I was home for the day and had to teach a yoga class and then had to wake up at 3:30am on Tuesday to be at Pittsburgh International Airport for a 6am flight down to Charlotte. By Wednesday afternoon, when I was catching my flight home, my butt was dragging. It was all definitely starting to catch up to me.
In the car on the way to the airport I contemplated asking to be wheeled to my gate, but I decided against it. I had wanted to walk it AND carry on my bag this time, and I was going to do it!
When I got to the airport, I decided to go up to the handicap side of the line because I was already starting to not feel great and knew I wanted to get to my gate as soon as possible. The security line was longer than I was expecting and I knew standing in that line was going to cause me issues. In my mind, I needed to get through security and to my gate as soon as I could.
So, I walk up to the TSA agent who was checking tickets and IDs and start pulling out my ID from my wallet. He looked at me and said something to the effect of “this line is closed.” And motioned back to show that the rope was up. Well duh, I thought. In order to allow me to go through you’d have to unclasp the rope and let me go in the regular security line. I was confused? I’m not sure exactly what my response was, but it was something like “Huh? This is the handicap line – I’m disabled.”
And he looked at me, scuffed, and responded with “No, you’re not.”
I wish I could have seen my face at that moment because I was like ummm, what did this guy just say to me?
I respond with “Um, yes I am. I probably even have my disability card here in my wallet.” So I start looking for the card that I received when I was issued my handicap placard. The card is totally worn and discolored and I was praying that it was in my wallet. I knew that sometimes I left it in my car.
As I’m looking through my wallet, he proceeded to ask “HOW are you disabled?”
HOW? HOW AM I DISABLED?! Was this guy serious?! Was this seriously something that he was asking me.
I looked at him and said “First off, you’re not allowed to ask me that. Second off, I have psoriatic arthritis and I AM disabled”
At this point I’m like, PLEASE GOD let this disability card be in my wallet. As I’m thinking this, I spot it, I whip it out of my wallet and show it to him. He looked at it and said “Well, I have to talk to someone.” Totally not taking me seriously.
He proceeded to say “This line is for people in wheelchairs. So, if you’re not in a wheelchair, you have to stand in line.” And motions back to the long security line that I had definitely already noticed.
Pardon my french, but ARE YOU F’ING KIDDING ME!? I couldn’t even believe this was happening. I felt SO small. I started shaking I was so upset. I’ve literally been REJOICING that I no longer need my crutches, but in this moment I WISHED I had my crutches. Then he would have taken me more seriously, then he wouldn’t have questioned me, then we wouldn’t have even been having this conversation! At this point, I was glad I wasn’t with my new coworkers because seriously how freaking embarrassing is that?!
In that moment, I started thinking about all the stories I had heard of people not being taken seriously. I started thinking about the endless conversations that I had been involved in with Patients just wanting to be treated equally. I started thinking back on how many people I had heard trying to raise awareness about invisible illnesses and how there is an entire week devoted to raising awareness. (Read my post from last year’s awareness week)
I started getting really upset. I was trying to remain calm and collected, but my mind was racing all over. I stood there for a few minutes and didn’t even look at the guys name! NOT ONCE!? I couldn’t really think straight because I was shocked this was happening.
During my trip to HealtheVoices, the weekend prior, I had been talking to Britt Johnson / Hurt Blogger and she had been telling me how this happened to her once at an airport too. That she was trying to board a plane early and the gate agent gave her a hard time. I remember being disgusted that someone would question a young person saying they’re disabled. Is this something you think people actively want to say?! Do you not think we’re already dealing with enough than to have to be shamed in front of the long line of people waiting to go through security? But here I stood, going through the same thing. I found it odd, we had JUST been talking about it.
The TSA employee had called another man over. I show him my card, he said “OK” and he let me through. I couldn’t even look at that other guy. How rude?! HOW are you disabled?! How did he even think that was a legitimate question?
I’m all for people thinking I look healthy and that I don’t have health problems, but I’m sorry, to discredit someone telling you they need help, and that they’re disabled, is absurd. So uncalled for. So ridiculous.
I’m strong. I’m confident. I know I’ll be fine. I’m glad this happened to me because I know I can, and did, handle it. But imagine if I wasn’t as strong. Imagine if I didn’t have the confidence I do. Imagine if this would have crushed my spirit?
I had been so excited to be feeling like a “normal” person, but still needed a little help. It was like I was chastised for asking for help.
After going through security my mind was all over the place. I found my gate and started decompressing from what had just happened. WHAT?! I just couldn’t even believe it. I’m sorry, but Charlotte Douglass Airport NEEDED to be made aware of it. So I turned to social media to help raise awareness of what had just happened. I didn’t do it to be a jerk, I didn’t do it to be malicious, I did it because I’m not the first person that this has happened to. And I did it because this is what people who live with invisible illnesses deal with ALL THE TIME.
Still gave push back when I showed disability card. Made me tell him “why” I was disabled. @CLTAirport ridiculous & humiliating #chroniclife
I wanted to cry. Seriously, I’m so proud to NOT have my crutches & they ripped me apart @CLTAirport #chronicLife https://t.co/nk97Wdxl3b
I was going to ask the gate agent to board my flight early, but I was so upset and ashamed of what had happened I decided to just have SouthWest gate check my bag and get on last. I didn’t want to have to go through being questioned again. So, because of what I had encountered at security, I ended up sitting in the middle seat on the flight to Chicago. It was a small price to pay to not be further humiliated.
After I had sent out some tweets, I received some very supportive, loving tweets from my community. THANK YOU from the bottom of my heart for those. These are just a FEW of the tweets that were sparked because of the incident.
@justagoodlife @CLTAirport breaks my heart. #Chroniclife is hard enough without being made to feel afraid to ask for assistance we need
UNACCEPTABLE but sadly not unbelievable. Hugs 2 @justagoodlife for the ordeal & response #invisibleillness #advocate https://t.co/499vQGLEjl
It never stops with the airlines… Or the public assumptions of what disease looks like. https://t.co/IEyiOjcTx1
@justagoodlife @CLTAirport Absolutely agree! I have not been as brave as you were. You empowered me today to think differently next time! X
This is why we need each other.
This is why we need to share our stories.
This is why sharing the patient voice is so important.
This is why I do what I do!
It’s kinda ironic that I had just come from a strategy meeting of finding ways that we can help amplify the patient voice. If this experience did anything for me, it helped motivate me help even MORE patients.
Charlotte Douglas airport did reach out to me and I told them I wanted to talk to the terminal operations manager and the supervisor of the TSA. I want to know what they’re doing to address this, what they’re doing to prevent this from happening to anyone else – visible or invisible disability – and I want their employees to hear (either from reading this blog or from me directly) my story. Here is the DM conversation I had with them (click on the pictures to be able to read it!), my last comment was that I wanted them to call me directly. At the time of publishing, I’m still waiting for the phone call back from them.
If you only read one thing in this whole blog post, read this:
KEY TAKE AWAY: Not all disabilities are VISIBLE.
Just because someone is not in a wheelchair, doesn’t mean that they don’t need help.
There are SO many others out there who are just like me. Who seemingly look “healthy”, but need assistance. Who need to use the handicap line. Who don’t necessarily like having to be labeled “disabled” or “handicapped”. Sure, I realize there are some who probably abuse it, but don’t penalize those of us who actually do have problems because of their ignorance.
I would have NEVER chosen to get sick, but honestly, I feel like it was a blessing. It created the perfect situation to allow me to rise from the bottom to the top. Into the person I truly was to become. I don’t wish anything bad on the TSA agent who I encountered. My hope for him is that he understands that disabilities come in all forms and that we need to treat each and every one of us – regardless of race, sex, gender, ability, disability, religion, etc – the same. WITH RESPECT AND DIGNITY. I feel like this situation gives me the perfect outlet to help raise awareness for those who cannot speak up for themselves.
I’m sure I’m not the first person who’s had this happen to, but what I can do is help to make it one of the last.
Have you been discriminated against before?? This wasn’t my first time. A few years back, I wrote this blog post about when I had a note left on my car basically stating the same thing – that I “wasn’t handicapped”. And I even had my crutches then!
If you’ve been discriminated against, comment below! And if you have a blog you’ve written about it, post it as well.
Individually we may be just one case, but together we can truly make an impact.
Wishing You A Pain Free Day!
I wanted to let everyone know what has happened in result of this incident.
This event occurred on a Wednesday evening. Thursday afternoon, I received a call from Martha the Terminal Operations Manager at CLT. She was genuinely sympathetic and very gracious in her apology. You know when someone is truly touched by something? I really felt that she was upset by what had transpired. I like to believe that I can read people well and I really felt that she understood and knew it was unacceptable. She apologized profusely and said that she wished she could have caught me before my flight left to have handled this in person. I appreciated that, but I know that the timing of it all wasn’t optimal, so I don’t blame them for that at all. I explained that I wasn’t trying to be vindictive or malicious raising this issue, but there was definitely awareness that needed to be raised. She agreed and said that she had already submitted a complaint to the TSA and one of the managers would be calling me. Since they hadn’t called me already, she was going to follow up with them again.
Friday evening I received a call from a TSA Manager. The call was after 6:30pm on a Friday night and I almost felt like they had waited until they figured I wouldn’t answer. I was also frustrated that they had waited almost 2 days to actually give me a call back. Therefore, when I first received the message I wasn’t super happy about it. I had already gone out for the evening and put it on my calendar to call back the next day.
The next day, the manager actually called me first. I appreciated that. And I have to say, I believe I was wrong with my initial impression. Dalia, the TSA Manager, again was very apologetic about the whole situation and went on about how it wasn’t an excuse, but TSA was having some issues at that point because they had just closed one of the lanes and were merging everybody into one. Ok, whatever. It is what it is. But what she went on to say really made me realize that she was taking this seriously.
She went on to explain that she has 2 daughters- one is a psychiatrist and the other is a psychologist – and was very aware how not all disabilities are visible. I feel like she almost took my situation personally because she, again just like Martha who had called from CLT, felt genuinely sorry. She went on to explain how TSA puts their officers through extensive training – especially with invisible disabilities. They also have reoccurring training, which, coincidentally, they had just completed.
Dalia mentioned that she had watched the video tapes several times and had spoken one on one with the officer who I had the problem with. She said that she was really surprised that it was him because he was one of their best officers. He had gone on to say that there had been many people who were trying to skip the line (because of the line merges the security line was fairly long) and that when I had approached him I looked perfectly fine. I went on to explain that I totally didn’t blame him for not realizing that I had a problem.
I said that if she told me what the process should be, I’d be more than willing to disseminate that information to my blog readers and other invisible illness warriors. She went on to say that as long as you have your card the officer should just allow you through. I will admit, I didn’t have my card out right off the bat. So I will take that lesson away from this – next time, make sure to have your card out. And, to me, that is a perfectly reasonable request! I can surely do that.
She also mentioned how it had infuriated her that a wheelchair had come behind me and actually was taken in front of me while I still stood in line. She said that was not fair to me and I should have been taken first. To be honest, I do remember the wheelchair coming up behind me, but once the officer let me through, I didn’t even pay attention to what happened with the wheelchair.
So what will come of this incident?
Dalia made it a priority that each and every TSA officer had to read the situation as part of their daily duties and she said the she’d make sure that each of them knew what had happened. The officer that had denied me access at first will have to retake the training that he just completed on invisible disabilities.
How do I feel after?
I feel fine about it. I plan on reaching out to TSA in Washington and reporting the whole incident so that they know about it and can see that even though they’re having this training, discrimination is still occurring. But, from the 2 women that I spoke to, I do believe this situation started conversations which weren’t happening before. Martha mentioned that all the staff was talking about it because a lot of them had seen the tweets that were sent out on twitter.
Like I said before, I wasn’t doing this to be rude or to start a war. I wanted to raise awareness. And I feel like in the Charlotte airport awareness has DEFINITELY been raised. My hope is that the TSA agents at the CLT airport will now have more compassion and awareness of invisible illnesses from here on out.
I’m so humbly grateful for each and every one of you who have reached out to me and who have shared my story. Thank you for being an amazing support team for me. I truly appreciate each and every one of you!!
THANK YOU to The Mighty for sharing my story as well. You can view it here.