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.
https://twitter.com/justagoodlife/status/722890028246900739
https://twitter.com/justagoodlife/status/722890249144115201
https://twitter.com/justagoodlife/status/722891903847411713
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.
Erin Gilmer (Legacy) on Twitter: “@justagoodlife @CLTAirport breaks my heart. #Chroniclife is hard enough without being made to feel afraid to ask for assistance we need / Twitter”
@justagoodlife @CLTAirport breaks my heart. #Chroniclife is hard enough without being made to feel afraid to ask for assistance we need
Emily Cash on Twitter: “@CLTAirport Are all your employees this rude? I really hope you take this seriously and educate your team. Shame. https://t.co/TBpfo6wW9O / Twitter”
@CLTAirport Are all your employees this rude? I really hope you take this seriously and educate your team. Shame. https://t.co/TBpfo6wW9O
https://twitter.com/AshliSC/status/722891461855805441
UNACCEPTABLE but sadly not unbelievable. Hugs 2 @justagoodlife for the ordeal & response #invisibleillness #advocate https://t.co/499vQGLEjl
— Float Like a Buttahfly 🦋 Kerry Wong (@buttahflyk) April 21, 2016
Brooke Abbott aka The Crazy Creole Mommy on Twitter: “@justagoodlife same thing happened to me leaving #HealtheVoices16 at O’Hare / Twitter”
@justagoodlife same thing happened to me leaving #HealtheVoices16 at O’Hare
Empowering Patients,LLC * Alison on Twitter: “We want to use our strong voice & come together to teach airlines. No one should go thru this EVER. #HealtheVoices16 https://t.co/mazCxJajIO / Twitter”
We want to use our strong voice & come together to teach airlines. No one should go thru this EVER. #HealtheVoices16 https://t.co/mazCxJajIO
Britt Johnson aka Hurt Blogger on Twitter: “It never stops with the airlines… Or the public assumptions of what disease looks like. https://t.co/IEyiOjcTx1 / Twitter”
It never stops with the airlines… Or the public assumptions of what disease looks like. https://t.co/IEyiOjcTx1
@justagoodlife I'm so sorry this happened to you! 😞 I'm a little terrified when it comes to traveling because I fear this might happen.
— E (@punnysamosa) April 20, 2016
AttitudeISEverything on Twitter: “@justagoodlife @CLTAirport Absolutely agree! I have not been as brave as you were. You empowered me today to think differently next time! X / Twitter”
@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!
UPDATE:
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.
If you’ve had a similar situation – at the airport or really ANYWHERE – comment here! And if you’ve written a blog post about it, make sure to link to it!!!
While I wasn’t made to get in line, TSA was incredibly rude to me while I was in my wheelchair traveling on my honeymoon. The agents at DFW and JFK made snide comments about whether or not I could walk and made me stand for an uncomfortable amount of time (I was already flaring) in order to test my wheelchair for god-knows-what. They didn’t offer me an agent to push my chair to the gate, either. My husband was forced to carry all of our carry-on items and push me at the same time, and no one met us at the gate when we arrived at La Guardia or back at DFW. I was surprised because the first time I had to use a wheelchair when flying back from Rome, the agents who transported me to and from the gate there and in Madrid were wonderful (though, now that I think about it, a gate agent didn’t meet me at DFW either, and I had to self-propel all the way through customs and into the baggage claim to meet my family). I’m sorry you had to experience this, but it makes our advocacy work all the more important!
It does. It confirmed to me exactly why I do what I do. THANK YOU for sharing! I’m so sorry you also had to go through an uncomfortable experience with TSA.
FWIW, TSA isn’t required to push you to the gate, but the airlines are. Look up the Air Carrier Access Act.
Yes! This has happened to me, but thankfully I am grounded since my eardrum won’t heal 😉 Recently the worst part has been work. My hearing is constantly fluctuating in my meniere’s ear, which makes it VERY difficult to know how loud I’m talking.
We’re sharing an office with another program, and recently I’ve been taking LOTS of crap and insults from coworkers from the other program because sometimes I am loud, and don’t know it, especially when I’m on the phone. I use an earpiece in my left ear (right has the loss). So on the phone I am pretty deaf.
It’s been really embarrassing and upsetting since I got back from surgery. I assume that my ear is more unstable because I’m in a “flare” of some kind. It’s upsetting when people insult you because they think you’re young and pretty and should no better.
I also have anxiety when I’m out and people call to me when I’m walking by, I’ve learned to just look straight ahead because I’ll never know what they’re saying LOL.
I have to say MY coworkers (not the other prog) are super awesome and sweet, I came to them with a broken ear. They take good care of me and try to help. My clients are also super lovely. They ask good questions, and it’s a good ice breaker. We joke about my headset, they forgive me when I need something repeated, or need to sit a certain way to hear.
But it is awful to look fine and not be fine. I constantly am getting in over my head, doing things a shouldn’t! Walking without my cane, lifting stuff I shouldn’t lift, and I realize I need help, and none is offered. I’m also afraid to get a disability plate, which is stupid, I don’t want the stigma. Oh, my other favorite is talking to someone in a crowd and they disappear from behind m LOL. Thanks for sharing, TSA is the worst. Once I had to go through security with a shitty plastic cane and people being pissed because I was slow. Getting to the gate on my feet, and all the chairs are full, and I am close to passing out before I can’t get someone’s attention for help.
I am rambling 😉 I would love to know how you approached your doc about the plate. It was bad enough for me to when I asked for disability papers. It’s time for me though, it’d make life easier all the way around.
Thank you so much for sharing! I had my orthopedic doctor complete the handicap papers for me back in 2012. I couldn’t walk without my crutches and truly needed it out of necessity. Now a days, I’m doing really great and only use it if I ABSOLUTELY need to. But it’s such a comfort to know it’s there. I hear ya on not wanting to go and ask about it. I pretty much didn’t have a choice when I went out on disability. I had gone out for a simple surgery, that turned into months of not being able to get out of bed. It was horrible. But luckily, at 27, I had good disability insurance. Something I NEVER thought I’d need when I started my job right out of college. But I’m thankful for that everyday. Again, thank you so much for sharing — I like you’re ramblings 🙂 Sending you lots of light + love!
I used to require the use of a walker. I found/find it upsetting that the availability of handicapped parking spaces is a requirement, but a handicap door button is not to allow for easy entry into a business is not. Sometimes an employee would rush (thankfully) to my aid, and hold the door open for me. This is not always the case for one reason or another, and in one instance I was so frustrated I contacted customer service. I had gone to Starbucks with the intention of going inside to purchase my caffeinated beverage, but when I arrived, I discovered they didn’t have a handicap door button. Scalding hot beverage + struggling my walker through the door? Nope. What about when the door is too heavy to open? What good is an up front parking spot if you can’t even enter the establishment? And don’t even get me started on the people who stare while you struggle. Needless to say, I called Starbucks to inquire. They sent me coupons for free beverages…..that I could only use in the drive-thru due to the aforementioned issue.
Wow. Yeah, before my mobility issues, I truly didn’t give these things a second thought. There’s a whole world of accommodations that aren’t being met for individuals with mobility issues. Not to mention, most people don’t have common curiosity. I can’t tell you how many times I’ve been in public places where people haven’t held doors, or offered to allow me to sit, when I was on crutches. I mean, come on. At some point, let’s just be good human beings. THANK YOU for sharing your story!
My experiences: https://s.ai/tsa https://s.ai/tsa/legal/sfo https://s.ai/tsa/legal/bos https://s.ai/tsa/legal/sea
I had to sue them to get a response to my formal complaints. I won. https://s.ai/tsa/legal/rehab_act
I suggest that you complain formally to both the airport and TSA.
One thing to be aware of: the person who stands at the front of the line may or may not technically be TSA; TSA claims that the checkpoint per se only starts with the travel document checker (blue uniform, lectern, checks your ID & boarding pass w/ blacklight and a scanner). This person might be employed by the airport or even some coalition of airlines. It’s a complicated issue, legally, so just complain to everyone and see what happens.
But don’t take a PR brushoff for an answer. If you want to make systemic change, you have to at least make them go on the record with a formal investigation that has consequences. (FWIW, what I got in a PR response and what I got in formal responses were *totally* different things.)
Oh wow, this is some great info right here. That’s ridiculous that you had to SUE to get a response. I’m still waiting for a phone call . . . I assumed after my post, and my tweets to media on twitter, I would have received a call by now. Yeah, it was that guy (travel document checker) who was the one who questioned me. Will be interesting to see who he actually is employed by. THANK YOU for this information and for you help!!!!!
Typically there are two separate people: the TSA TDC at the podium right before the screening area (in standard TSA blue), and some schmuck at the very beginning of the line who glances at your boarding pass and maybe tells you which line to use. Stupid though it is, those are two totally different situations legally speaking. But FOIA the video & any reports and you’ll know for sure. 😉
And yes, it’s crazy I had to sue for something as basic as a mere response to my complaint that they’re required to give me by law and they get to draft. (Their defense was just “so what, you can’t make us”. Srsly.)
But at least it set precedent; the judge ruled that yes, I do in fact have the ability to force them to comply with the 180-day deadline to respond to my Rehab Act complaints. So if they do it again, someone else will have an easier time of it.
Calls or tweets will get you nothing but a press response, if that. Actual formal complaints get shit done.
Julie, there is no excuse for the discrimination you experienced. I spent the 2 days before this debacle working alongside you and our team, and your will and confidence are SO strong – imagine the fear, avoidance and stress experienced by people not as strong as you! People with invisible illness should never, ever be forced to “show their illness” to be treated with caring and dignity. I’ll say it again: you KNOW that all of us at WEGO Health are here to support you in this fight – because you are strong enough to be sure it never happens again. #WTFCLT
Jack! Ah, that was so sweet. Thank you <3 You're right, many of us don't look like we have problems. We've become great at hiding it and we shouldn't have to SHOW it. If we say we have a problem, we shouldn't be questioned. hahaha love the hashtag
I shared my issue on Twitter when I was flying back from Healthevoices at MDW airport. I cannot take my Continuous Glucose Monitor/Insulin Pump through the body scanner. It will ruin the equipment. I told the TSA agent in charge that I needed a pat down. He asked why and I told him. He then told me I was wrong that I could go through the scanner. I refused and told him I would not. We had an argument and finally a female agent came up and pulled me over to have my pat down & hands screened. I proceeded to go to the bathroom and cry. This happens on either my flight to or home, sometimes both. I don’t have to even have a reason, I’m entitled to a pat down if I request one. So frustrating.
On the flip side, I went to the airline desk and was given preboarding status after only a few questions about what I needed- more legroom, bathroom access, etc. Love Southwest!
Oh my goodness Molly! I’m so sorry to hear this. YOU know what’s best for YOU and your equipment. Wow. I want to give you a hug!!! THANK YOU for sharing.
My heart breaks for you Julie. I have had many times over, airport employees question me on why I’m boarding early, why I’m in the “handicap” lane etc. but I must say, I have never had any one of them deny me or refuse me to continue, some have given me that look of disbelief so its then I proceed to explain briefly to them- flat out & sternly-“I have a disease called Rheumatoid Arthritis, I am disabled-I have several joints that are fused & its hard for me to stand in line for long periods &/or move quickly etc.-I end by saying “I may not look it to you but I am.” END OF STORY. I guess as far as airport employees go, Ive been lucky without further incident. HOWEVER, multiple, multiple times, it has been the passengers that have voiced their judgement & disbelief, commenting out loud for all to hear, or shaking their heads. Sometimes, Ive ignored them & continued on my way…but lately these past couple years, I have to say, I don’t put up with anyone judging me. I think it has come with age, maybe having RA so long or maybe its hormones (lol) I don’t know but what I do know is I WILL NOT let anyone get away with it! I’ve had many times that Ive become livid & try my best to control my inner anger. I take a slow deep breath & then I turn to that particular person & proceed to explain to them the disease that I have, whether or not, they are listening. Some pay attention to what I am telling them & some quickly look away & ignore me, but I continue as briefly as I can to get my point across. I feel this is what educating the ignorant is all about- They truly don’t understand, & some don’t really want to. There have been many times that I have commented & probably even looked a little crazy eyed too- as I loudly state “how dare you judge me-You have no idea what i go through & the disease that I have!” For the most part, it makes me feel better. We live in a society that has many biased issues, racism, gender equality etc. We need to stay vigilant against this ignorance! That is why it is so very important to not let this airline employee/s get away with treating you as they did. We must never give up the fight especially when it comes to advocating not only for ourselves, but for the ones that are unable to. As long as there continues to be ignorance of our diseases, we need to continue the fight for awareness of living with a chronic, debilitating disease, that can sometimes or always be invisible to others. Julie, if you need any help-just let me know!
You’re so sweet Therese! Thank you 🙂 I definitely will let you know if I need help. And thank you for sharing all of this! It truly is about saying vigilant against ignorance and educating where we can. It’s definitely an education issue that needs addressed. I can understand at first glance if you don’t think I have issues, but once I tell you I do DON’T QUESTION ME. End of story.
So sorry that you had to go through this Julie! We should be subjected to treatment in this way, and you were correct in calling the staff member out on it. However it still doesn’t make up for the embarrassment that you have to deal with. I have had several difficulties with airlines! One that sticks out however was coming home from Hawaii. We were on the third leg of our journey and had flown overnight and through part of another day. I used to take wheelchairs or carts at the airport but try and get around as best I can without today. After getting off the flight I decided to take a cart as it was just too far to go to the next gate. So the cart dropped me at the gate in handicap seating. I wear an ankle brace to hold my ankle into place and have a deformed hand due to my CRPS. The agent behind the counter comes over to me and asks me to move seats as that seating is for people with disabilities! When it comes time for boarding the agent doesn’t let me pre board because I can walk on my own! I was in severe pain from all the travel. They told me I had to comply or not get on the flight! When I asks to speak to a supervisor about how I was treated I was told to file a complaint online or by phone. Treatment like this when its pretty obvious that I’ve got a disability isn’t right and needs to stop.
WOW. It’s one thing to not realize by sight, but once you told them you were in pain and needed the extra assistance they should have taken a much different approach. I’m so sorry to hear this! Thank you for sharing Ross
I had an issue at O’hare where first I didn’t have a wheelchair as was requested and then Im only 6 weeks out of my 3rd hip replacement and need assistance walking with a cane or crutches on and off. Well my left leg is now 2-3 inches longer than my right and in my shoe I have a lift that helps balance me out. To walk through the scanners you have to take your shoes off and I needed a cane to walk because the leg length difference makes me limp really bad and hard to walk. They wouldn’t give me one and I had to walk through the scanner twice limping really bad and everyone watching trying to figure out why it was taking me forever to get my stuff. People were skipping over me because I was so “slow.” It was beyond frustrating.
Did you ask for a patdown instead / explain that you’re not able to go through AIT screening?
I did. I have a note from my physician explaining I have hip replacements. I told them I couldn’t go through the metal detector (I’m 24 with hip replacements hardly anyone believes me). I had a cane with me but obviously had to run it through the scanner. I told them everything but it didn’t help.
Sounds like a violation to me. Could you email me details — date, location, people you interacted with, impacts on you at the time, etc? ([email protected])
Wow. I’m so sorry to hear this Aaron! <3 THANK YOU so much for sharing. You're an amazing person and to have to have gone through 3 hip replacements at 24 is crazy. I have so much admiration for you. THAT is enough to have to deal with. NOT TSA.
Another example of a young woman not taken seriously because of her disability. I had the chance to meet Brooke last weekend and she definitely as a warrior!! This is definitely a MUST READ blog post: http://crazycreolemommy.com/my-name-is-brooke-and-you-cant-see-my-disability/
On twitter I’ve heard NUMEROUS diabetes patients talking about having problems with their pumps going through TSA. Here is Christel’s experience: https://theperfectd.com/2013/03/26/feeling-frisky-with-the-tsa/
My son (20) is going on his first overseas trip to visit a friend in the US. After talking to his specialist, he’s opted not to take his Humira with him because he doesn’t think he’d be able to deal with the TSA and carrying a syringe that needs to be kept cold for the duration of the trip. He’s going to take a dose just before he leaves and hope that he’ll be ok for the 4 weeks he’s away. He looks fine now, but this time last year he was bed-ridden due to spondyloarthritis complications and needed a walking stick to get around. I don’t think people realise that many of these ‘invisible disabilities’ can mean a person is fine one minute and goes downhill very quickly without warning.
IMHO: your son should definitely take it with him. TSA policy explicitly says this is permitted — including anything needed to keep it cold, eg freezer packs. Walking sticks are also permitted.
They cannot require a prescription, any info about his condition, or the like. He does have to declare it as a medical item before going through x-ray. They might swab it for testing, but are not allowed to open a sealed container.
I’d also suggest he record all of it on a phone or the like. (For screening, just put the phone camera side up in a bin — still rolling.)
IANAL, IANYL, TINLA — but I *have* dealt with this sort of thing w/ TSA, have won against them in court on the one case decided so far, https://s.ai/tsa/legal/rehab_act — & am prepping a case about the liquids policy, https://s.ai/tsa/legal/sfo
If they give him any shit at all about it — or if he does decide not to take medical items with him because of TSA’s policy — please email me. [email protected]
Thanks a lot, this really is a truly awesome article! I am sure there are many people who are faced with the same problems I recently had. I couldn’t find You will be surprised how easy it can be to fill forms. Try fillingl a form through the online software
http://goo.gl/xksgiB