In a perfect world dealing with Mom’s MS would only be stressful because of MS. It would not be more stressful because of others. People around us would cooperate and be helpful everywhere we went, they wouldn’t make comments, give us looks or stand in our way. I learned a brutal reality while we were on vacation last week that it is very much not the case.
In the real world, people stepped in front of Mom as she tried to roll around in her scooter. They would sit and stare at us when we are trying to help move Mom. They slam doors on us. They say rude comments when we are trying to use the scooter through the lobby. People are rude.
The most shocking moment of the trip is when we boarded the airplane second in line behind someone who was so not handicapped the thought of it still makes my blood pressure rage. We flew Southwest Airlines and they select which wheelchair is going to board first based on what method I do not understand. Because if it was by need, we would have gone first. We informed the gate attendant that Mom was going to need a physical lift, aisle chair and assistance to get on the plane. The gate attendant took another woman who had her own wheelchair and her husband who followed behind and they rolled on to the plane and took the number one spot. Mom on the other hand needed to be the first on the plane because she had to use an aisle chair to get to the first row. These people just sat and stared while mom was wheeled in her aisle chair and had to sit in the second row because they had taken the first row on the left, the only side she can transfer to easily.
I realize there are a lot of reasons I may not be able to see why someone may need a wheelchair. Allow me to explain- How do I know this woman didn’t need this extra assistance and position in line? Because my family was the last off the plane. And after everyone was off and we were waiting for assistance for Mom the flight attendant said, someone left their wheelchair. Someone used it to get on board and then left it. She was trying to figure out who it was and I knew exactly who it was because I had watched this same couple walk off the plane first without their wheelchair. I was livid and kept my mouth shut in offering up the information I had about the owner of the wheelchair. You needed to be the first on the plane in your own wheelchair yet you didn’t need it when you got off? Is this a joke?
The flight attendant also said it is interesting that they usually board about 9 people with wheelchairs and miraculously cure about 4 of them in the air and they walk off the plane. People who just want to be on the airplane first. Can you believe this? I would never even imagine doing something like this but it is happening all over the place on Southwest Airlines. I personally think it was to do with their boarding policy being first come first serve. I need to watch more closely the next time I fly a different airline to see if the same issue exists. As this was my first time flying with Mom, it was the first time I actively noticed this.
So where does Be Aggressive come in? Well in a few distinct instances:
- The security guard wanted mom to take off her shoes to be wheeled through security. This is actually a big ordeal and painful for Mom- I should’ve said no.
- We should’ve demanded Mom be the first on board. I guess the reason we couldn’t is because we were focused on about 500 other things at that moment and you are at the attendant’s mercy, Mom has MS- when you are actually handicapped nothing is easy and people should be respectful of that piece of your life.
- A man yelled at Mom to slow down in her scooter through the lobby when he was the one who stepped in front of her. I should’ve turned around and yelled back.
- On the return trip I was trying to get Mom’s medicine out of her overhead bag while people were boarding the plane, not blocking the aisle at all, and instead of giving me a minute the flight attendant yelled at me that there was no baggage space above. Get a grip jerk! I snapped back I am not trying to put a bag up I am trying to get my Mom’s medicine down and sat down- without the medicine.
- The police officer yelled at me when I drove the car up when we had arrived home telling me I couldn’t leave the car parked there. I said I had two wheelchairs inside and he continued to be condescending, yelling at me to move it. I yelled (because we were communicating in a loud environment not even near each other) I’ve got a Mom with MS and an 86 year old Grandfather. They can’t physically get out here. So he backed off and said I could have a few minutes.
But still. It shouldn’t get to that. It is just the initial gut reaction society has that you are in the wrong, you aren’t telling the truth, you are taking advantage- guess what society, you could try to help us out just a little bit! Sometimes we are at our wits end with everything we are juggling and all we need is someone to be nice to us and our family. Someone to hold a door open. Someone to help me find room for my overhead bag. Someone to make a funny comment to Mom. Because those tiny things, they did happen during our trip and they may seem insignificant but they meant the world to me and made me feel like we were going to be okay. They made me feel like other people had our back.
I imagine it is because of people like I described above who are so clearly taking advantage of the systems in place for handicap people that those who truly need the assistance have to fight to have it. I say fight to have it because that is how I feel. Numerous times did Sister K and I have to get aggressive with our voices on the trip to get people to move, to get things done and to get some help. It is not in our nature to do that or to respond in that way. We were raised to be polite and not stir the waters until necessary. We are being forced to learn in a strange way how to stir the waters and how to quite honestly, BE AGGRESSIVE, BE-BE-AGGRESSIVE.
Lesson Learned: Look out for others when you are traveling or in daily life. Get out of your own bubble and recognize when someone may need some extra assistance or just an extra smile. It can be more powerful than you realize. And if you are on the receiving end of rude people or poor service with a loved one, get into the habit of fighting back for your loved one. Don’t think about it or think about if you are being rude. Just do it.
I am curious if other people have had similar issues with traveling, people taking advantage of handicap situations or people being rude? Or maybe you remember a distinct moment when all you needed was one person to show you some kindness in a very stressful situation and they did, reminding you that people are good?
I am so sorry for what you all went through. Unfortunately with 7+billion people in the world mean people exist. I believe they are not the majority. I have had similar experiences and I have learned to deal with it. Mostly importantly be assertive not aggressive. You and your Mom have rights over and above the usual. You have the right to be heard, to be respected. Sometimes other people need to be reminded of that. I developed a thick skin but I also never back away from what is right. I may have MS but I am not to be trifled with.
You are very right- assertive not aggressive. We do have rights and the right to be heard and respected is key in that…it may be uncomfortable to remind people of that but I need to remember that is my responsibility and get a thicker skin. Thank you for your comment and support as always!
I work in the medical field, and I remember when i was strangely put on night shifts. My meds at the time made me feel really sick at night occasionally. Well it happened on one of the night shifts and I couldn’t stop shaking and was insanely cold. I had multiple blankets wrapped around me and was holding on to a hot pack. needless to say I had to leave mid shift. Well, some of the other aides actually complained that they had to pick up my patients. I had already done everything I needed to for most the night and all my patients were nicely sleeping. They were just sitting at the nurses station playing computer games. I couldn’t believe how rude they were.
Although the most rude comment I usually get is either…”you don’t actually look sick” or “so when will you die from the MS?”
This makes me so upset for you and for everyone else out there who is dealing with similar situations. I think that has been the toughest part is that people just don’t understand MS. They don’t understand how someone like you can have it and be working full medical shifts and then someone like my mom can have it and be handicapped in a wheelchair. Regardless of the symptoms, it is all the same MS and people should respect it and not question you for it. Thank you for sharing this even though I am sure it is not a memory you enjoy remembering. I appreciate your comment very much! You sound like an awesome person and fighter!
Thankyou! It definitely wasn’t the ending I was hoping to have. But luckily not everyone was like that. Some of my more favorite co-workers even drove me to my car blanket bundle and all. It takes an army to be someone with MS, that is for sure. Thankyou for being part of that army for your mom! I’m not sure where I would be without mine!