When I travel, I have become very adept at advocating for myself. First, I know I need a wheelchair to get me from the ticketing area to my gate. And when I get to my destination, I need a wheelchair to get from my flight to baggage claim. Last week, my dad experienced the benefits of being with someone with a disability while traveling. When you have lemons, you’ve got to make lemonade, right? The employee who is responsible for transporting me is able to go right up to the front of the security line. They are so helpful and take all of my carry-on items, jacket, shoes, and put them in the bins for me. All I have to do is walk through security, and then they are on the other side waiting to help me sit back down again. The Somali woman who helped us the morning we departed Minneapolis was very cute when she asked me, “Are you over 75?” Another woman working security had told her I needed to take my shoes off unless I was 75 years old or older. I laughed and shook my head to let her know I wasn’t 75 as I leaned over to remove my shoes. I have always felt younger than my age. But has the incredible stress I’ve encountered this last year made me look 31 years older than I actually am? I had to chuckle. Her innocent question had made my day.
The second thing I need is a seat on the airplane that reclines, in addition to it being a window seat. In that way, my head can be supported as best as possible. Right before our flight out of Minneapolis was about to board, I heard my name over the speaker. I walked over to the desk and asked what they needed. “I see you have a disability. You’re going to have to change seats because you’re in an exit row. We need everyone who sits there to be able to perform that duty. I can put you and your dad in the back row.” I asked if the seats in the back row recline because I can’t be in a seat that doesn’t. Of course, I knew it didn’t. But that was all she had to offer us. Here we are, my dad and I about to take our first trip together without my mom, and she is telling me we can either have worse seats so we can sit together or we can be split up. Ugh! When we purchased the tickets, it never said the seats were in the emergeny exit row. Plus, we had bought those tickets months ago, and they knew I had a disability then. Why hadn’t something been done about it before now? Needless to say, I wasn’t happy. And we didn’t get to sit together. Delta will be hearing from me about this incident because it was completely avoidable and unacceptable the way it was handled. The bright spot was that the woman sitting next to me was from New York City, so she gave me additional ideas of fun places to see. When we landed at La Guardia, there was a wheelchair waiting for me with my name literally flashing on it. It was a pretty cool way to be welcomed to a city I hadn’t been to since the 6th grade.
Everyone in New York City was so nice. We met so many people, and when I asked for what I needed in regards to my health, there were never any questions asked. I didn’t need to defend myself at all or elaborate on how my health affects the limitations I have that affect every part of my being. If I asked for something or stated my limitations, I was given what I needed. Unfortunately, I don’t always find that the case at home, both with people who know me and with people who don’t. Even yesterday, I had posted on a new online meet-up group for helping rescued animals that I had a disability and would only be able to attend an event if someone who lived close to me could pick me up. I’ve learned how important it is to ask for help from others when necessary. One woman from the group appeared to hop up on her high horse so she could look down on the rest of us and replied, “I firmly believe that if you are volunteering to be an advocate for animals, then you will find a way to get yourself there. Take a bus, taxi or one of those busses for handicapped people.” Talk about having a lack of compassion, especially when the point of this group is to show compassion towards animals through acts of kindness.
The ways I’ve had to amend my volunteering in the community is a topic for another time. However, my other volunteer groups understand: my health comes first. They know I’m volunteering on the condition I may need to cancel if I’m not feeling well, and they understand. For some reason, people who don’t have a disability do not understand how living with chronic pain affects what I can and cannot do. And that is exactly how I responded to this woman. “People who don’t live with a disability just don’t understand. Finding transportation that doesn’t cause a lot of pain for me isn’t easy. Hopefully, one of the people who lives up here will be willing to help me.” I left it at that. Everything is related to my health. I shouldn’t need to explain why I can’t do something or that I can only do it at a certain time. I know my limits, and I have to put my physical needs first. That’s just the way it is. Who knows? If I had put my needs first my whole life, I may not have cervical dystonia. I can’t go back in time, but I can honor myself now by being honest with myself and others regarding what I can and cannot do. New York City seemed like a haven that provided plenty of what I needed. I won’t go into NYC stories here. Details of the trip would be better for my personal blog called “The Stories of Our Lives.” Suffice it to say, Manhattan and I became fast friends.
When we departed from La Guardia, we got the same outstanding sesrvice that we had gotten when we arrived. They even called my name so that I could pre-board. My dad and I got to sit together on this flight, and I enjoyed hearing his stories about growing up in rural South Dakota. The funny thing was that this flight was only half full. As I walked back towards the bathroom, I noticed only one young woman sitting in the emergency exit row. My dad and I agreed that none of us would’ve survived if she had to carry out her job. If only one person could sit in that row, why couldn’t my dad have been the one person responsible for opening the door on our flight from Minneapolis the week before? The Delta employee who split my dad and I up did not understand, even when I asked her if she understood why I was so frustrated by the situation. She was a robot, repeating aloud our only two choices she could think of. I finally had to accept that with her, that’s just the way it is.
MY HOPES: My hope for me is that I stop defending myself. I don’t have to. If someone asks why I can’t do something because of my health, I will simply reply, “That’s just the way it is.” My hope for others is that they will accept the needs and limitations that are told to them by people they know with chronic illnesses. It is nothing personal. That’s just the way it is. After living with cervical dystonia for 4 1/2 years, I have gotten very skilled at knowing what my limits are. And a final hope is for people who suffer from chronic pain to advocate for themselves, as well. Your health needs to come first, and you shouldn’t have to defend yourself. So don’t! When you are making plans to travel, be sure to tell the airline you need help. Even if you are someone who is in a temporary situation like a broken leg, let them know what you need in advance. They are more than happy to accommodate. That’s just the way it is.
The one question my dad and I have for all of you is this: What is the proper protocal for tipping someone who wheels you through the airport in a wheelchair? Is it simply a part of their job so no tip is needed? Or do you tip them? We chose to tip the three people who went out of their way to be super friendly and helpful. When I’ve gone on other trips, though, I haven’t tipped the person who works for the airlines and pushes me to my destination. Have any of you ever been in this situation, either with yourself in a wheelchair or being with someone who is? What did you do?