Traveling alone to a destination you have never traveled to, knowing no one but one person, and they don’t even know you’re coming is pretty scary, right? Imagine adding being a quadriplegic to that equation. Now it seems even scarier, right? Well, it is very scary, but totally doable, because I did it, survived it, and now I’m sharing this experience with anyone who wants to know how…
Organizing the Trip
I decided to surprise my boyfriend whom lives in Missouri for his birthday. I live in California, and I am a quadriplegic. I am a C-5/C-6 complete quadriplegic 32-year-old female. Four years ago, I was in a rollover car accident where I lost control of my SUV, broke my neck, and severed my spinal cord. Before my accident I used to love to travel, when I was injured I thought this part of my life was over. I thought it would be completely impossible for me to travel now, especially by myself. The part that seemed really impossible was that I don’t really have any hand function at all. My right arm is the only one that’s functional, which means I need help with pretty much everything except for driving my wheelchair. How on earth would I be able to manage by myself, who would help me, how would this ever be possible?
When planning a trip like this keeping a realistic timeline is really important. There needs to be enough time to plan, anticipate plans to change, and have a plan B. Luckily, my boyfriend’s birthday was in October and it was only August. This gave me two months to plan for the trip, as well as gave me time if things did not turn out the way I would have liked them to. Before this adventure could begin, I had to make a list of everything that would be an absolute necessity to make this successful. I also created a list of people that would be my support system in each category. Both of these elements working together would be absolutely critical in making this whole plan work. The list included, caregiving, flight, care plan, finances, room and board, transportation, party planning, emergency plan, and a list of what to bring. I tried to make the list in order of priority, but some things just ended up falling into place as other things were being planned. I identified my boyfriend’s sister as my point of contact in Missouri in general for this entire project. I really needed her help for several things, interviewing caregivers, finding out about hotels, transportation, and planning the party.
I was really nervous and uneasy about the trip, I didn’t even know where to start. I really wanted to get some advice from people who had done this type of thing before and had a spinal cord injury so I would at least know where my first focus should be directed. I posted something on Facebook in the spinal cord injury section about some advice from people who have traveled as high-level quadriplegics by themselves. I received some feedback from a couple of people, but nothing that I could really use. I spoke to a friend who had traveled across the country before, and he gave me some tips and advice. There were several websites online that I navigated through looking for some advice, there weren’t really any geared towards quadriplegics, everything was more for paraplegics. I realized that I just had to start planning, I had to start somewhere. First order of business, securing a caregiver.
Caregiving was one of the most important components for my trip to be successful. I spoke to all of my caregivers and let them know my plan. My two options were to take a caregiver with me, or to hire one in Missouri. If I were to take a caregiver with me, I would have to pay for their flight, as well as their hotel stay, and the hours they would be working with me. It would also be guaranteed that somebody would know how to do my care. If I were to hire a caregiver in Missouri, I would just have to pay for the hours they would assist me. The flipside of that is that I would have to train them from scratch being that we didn’t know each other, and I would run the risk of crappy care.
After speaking with my caregivers, none of them would be able to accompany me on my trip, so my only option was to hire someone in Missouri. I spoke to my boyfriend’s sister and she assured me that she could assist me in case that I could not find anyone else to. She also reassured me that she would be able to help out with whatever I needed in the process of finding care. First I asked around to friends and family that I knew had connections in Missouri of some sort, and asked them if they knew any caregivers that I could hire while I was there. Usually when looking for care, I post ads on craigslist, so that is what I did for this as well. While I was looking for a caregiver, I was also looking for flights, which meant that I had to decide on when I would be traveling. I decided to travel between October 10 and October 17. The dates would be very important for my ad.
In my ad, I stated that I needed a caregiver, my exact situation physically, everything I needed assistance with in full detail, the date I would be in Missouri, the hours day and night that I would need assistance, how much I was willing to pay, and what I was specifically looking for in a caregiver. Due to the nature of my trip and how long I would be there, I really needed to find someone who was experienced in spinal cord injury or caring for someone in this capacity. I received over 20 replies.
I filtered through all of the resumes and selected those that I felt were the most experienced. I selected about five or six people, and first did a phone screening with them. I was then able to narrow it down to three or four people. I used Skype to interview them personally, and for the final interview I had my boyfriend’s sister interview them in person. I asked her to let me know what she thought being that she was experienced in spinal cord injury and was also a very good judge of character. I was able to narrow it down to one person to do my general care, and one person to do my hair and my makeup. I also selected one person to be my backup caregiver in case it did not work out what the person that I had selected. I drafted a contract for all three people and was very clear with them about my expectations. The contract included how much they would be paid, when rest periods would be, the nature of the job, hours they would be working, and other legalities that would protect me in case of anything fraudulent or anything that would endanger my well-being of any sort. I let the caregivers know that as soon as I figured everything out I would let them know my itinerary, and send them a copy of my care plan in full detail. I also asked them to research spinal cord injury, and all of the things I would need assistance with.
While I was looking for a caregiver I was typing up a step-by-step fully detailed care plan. This document explained every part of my care. It also included what supplies and products would be needed for that particular part. I also took a video on parts of my care that were extremely important. The care plan, I e-mailed to the caregivers I selected. The videos, I saved onto my cell phone to be easily accessible, because some of the nature of the videos were personal. I only allowed them as a reference as the care was being done.
Like I stated above, while I was searching for a caregiver I was also looking for a fight. I went with an airline that I was comfortable with and that I have already flown with. I picked Southwest Airlines because I knew them and I flew with them a couple of years ago to Las Vegas. I also chose them because they’re fairly inexpensive, and you are allowed two bags, plus a carry-on, and any bags with medical supplies are free. I researched some prices on the Internet, but chose to call the airline directly, and speak to someone live. When I spoke to the agent over the phone I explained to her my situation, what my needs were, and that I was looking for the best deal possible. She explained to me that flying Tuesday, Wednesday, or Thursday would give me the best prices available. She also explained that because I was booking two months in advance, I would also find really good prices as well.
The price of the airline ticket would definitely be the deciding factor on when I would be traveling. I decided to fly out Wednesday October 10, and come back on Wednesday October 17, giving me an excellent price. The other awesome thing was that I would be arriving in Missouri, on his actual birthday which added to the big surprise! The agent explained to me what to do when I got to the airport, she noted on my ticket that I was disabled and needed extra help, and she also explained what to do with my wheelchair and my bags. Whoever would be assisting me onto the airplane would be able to receive a special boarding pass as soon as we got to the airport, same thing for the return flight. That’s It! My airline ticket was booked and was nonrefundable, no turning back.
The next order of business would be looking for a hotel. Again, because I was booking so far in advance, I was hoping to get a good deal. I researched three or four different hotels and picked something that would be the most economical, and would have everything I needed such as a role in shower. Location was also very important. I wanted to choose a hotel that would be close to my boyfriend’s house, and if possible the airport. I also wanted to be near local businesses such as restaurants and stores.
Most of the places I found had different rates on the weekend as opposed to during the week. The fluctuation of prices were very significant from the weekend to the week. I ended up choosing a place that would charge me one flat rate for the entire week, had all the accessibility I needed, and was close to one out of the two being my boyfriends house or the airport. After I booked my room, the agent on the phone also informed me that because October was not a popular month to visit Missouri the rates were even better.
Now that I had booked my flight, booked my hotel, and found a caregiver, I had to set up transportation from the airport to my hotel. I had a few options. A taxicab would cost me about $150 from the airport to the hotel. A shuttle would cost me about $75 from the airport to the hotel. Both of them would be accessible, however, they would run me a little bit more than an able-bodied person taking a cab or shuttle from the airport to their hotel. Luckily, my boyfriend’s sister made up a story saying that she had some clients coming in from out of town, one of them was in a chair, and she needed to borrow his van since it was accessible. It worked, she picked me up from the airport. This option definitely saved me some money, and stress.
Packing is always so complicated when you have a disability that requires so much stuff! I started out with a list of things in order of process. I tried to take as many travel size items as I could to save room. I made sure I packed everything by going down the list making sure I had nothing to purchase when I got to Missouri. All of my medications went into my luggage, so it would be no problem, and just took a small amount of necessary medication in my purse. It was necessary to make sure that there were extras of things that were important, especially clothing and medical supplies. All of my bags were labeled, and made sure there was something on the luggage that would be easily recognizable.
Day of Travel
Getting to the airport was a piece of cake, I was so excited and could not believe I was actually going through with this! My caregiver got me to the airport, we unloaded the van, with help from the curbside attendant. I was able to check in my bags curbside, my caregiver was going to help me onto the plane, so the attendant produced a special boarding pass for her to get through security, and help me onto the plane. Getting through the line for security was fairly quick, because there was priority for people with disabilities. However, waiting for an attendant, getting patted down, taking my shoes off, and having them search all of my things was very time-consuming, arriving to the airport a couple of hours before takeoff was very beneficial. After getting through security, we had at least another hour to spare. My caregiver and I got breakfast, and then proceeded to the gate. Because I have disability, I was able to get early boarding.
Before boarding I explained to the flight attendants, and the luggage handlers that would be taking my chair down to cargo, how to work my chair. I left it on manual, so they wouldn’t even have to turn it on, they could just push it. My caregiver transferred me to an aisle seat, which seemed comparable to a moving dolly. The flight attendants wheeled me to my seat on the plane, and my caregiver transferred me to my seat. Luckily I had brought my sliding board, which really helped in transferring. I was strapped in and ready to go.
The plane ride to Missouri was not so bad. The hard part was the seat on the airplane. The seats were really slick, and after a couple of hours I was a little sore. The taking off is was not so bad, it was the landing. It was so hard to catch my balance, especially because I am a quadriplegic. Being that I needed help transferring from my airline seat to my wheelchair, I needed to wait until everyone got off the plane first. As soon as everyone was gone, the flight attendants and the airline staff transferred me from my seat to the dolly looking wheelchair thing, and wheeled me to my wheelchair. Luckily, nothing on my chair was damaged. I was transferred onto my chair, and my boyfriends sister was waiting for me at the gate, so I proceeded to baggage claim.
On the way home, the process was similar to the flight to Missouri. It was reversed, I got onto the plane, with help from the airline staff. At arriving in California, my caregiver was waiting for me and was able to help me. Over all, considering the circumstances, the trip was a success. I learned so much, it felt so good to be able to do something I never thought I would be able to do again. I’m so glad I figured out a way that this could be possible, and I’m so happy to share this with others and keep creating better and better ways to create and maintain a wonderful quality of life.
Equipment Tips for Quads and Power Wheelchair Users:
1. A Broadened Horizons Sling is great to get those who are unable to transfer themselves on and off airplanes instead of the aisle chair, which has support.
2. An AmSafe Torso Belt is a restraining tool to make take-off and landing safer for someone who cannot hold him or herself up. It loops over the seatback and latches onto the regular seat belt on the plane.
This is very encouraging and helpful. When I travel, I remove the cushion from my power wheelchair and have the attendants place it on top of the airplane seat. This is much more comfortable! I also use the Broadened Horizons sling/lift and the airline attendants use it to move me from my chair to the aisle chair and then from the aisle chair to the airplane seat. I leave it under me until I am transferred from the aircraft back to my power chair at the destination.
Thank you for sharing your experience in such detail! I am also a c5/6 quad and although I have flown with my husband or parents, I have yet to fly alone. Your story and your bio are motivating!
Where can I purchase the AMSAFE Torso belt?
To purchase the AMSAFE Torso Belt please visit this website or call Richard Good at 972-586-1306. The PN # is 228004-401-8005. CARES comes in two sizes, the regular CARES (for kids) and Special CARES which has an extra 10 inches of webbing in the torso and will fit someone over 6 feet tall. Special CARES is also FAA approved but still requires an FAA exemption if the person traveling weighs more than 44 lbs. or is taller than 40 inches. The good news is that the FAA exemption process is very streamlined and (up until the sequester) used to take… Read more »
A couple additional tips (no particular order) 1. We once had to get off a domestic commercial flight in S.Africa we had been boarded on cause the power chair would not fit in the hold – the KIND of plane you are booked on makes a difference, check first! 2. Always make sure to request, politely but firmly, that the chair be delivered back to you at the gate – especially with a high level of injury the airport wheelchairs are of no use, they offer no support whatsoever 3. Be very clear that the chair needs extreme care in… Read more »
Yes! Excellent points.
Interesting that you mention airlines paying for chairs they break. There is current petition in uk to persuade BA to cover the cost of one they broke . An expensive £25000 one apparently.
Thank you!!! The information you shared is appreciated. I’m a T4 and didn’t have a clue on if I’d ever be able to travel again. You have encouraged me deeply.
Although I am mobility challenged I can walk a short distance. When I fly I take my chair to the door of the airplane where I removed the joystick controller and fold the chair down to its travel position. It weighs about 55# and fits everywhere. I can then walk far enough using the seatbacks to my seat. Upon arrival, I wait til the plane is empty and the chair returned to the airplane door hook up the joystick and I am off. My wife and I have been to Europe and on several cruise ships and it makes life… Read more »
Excellent, thanks for sharing.
I have Primary Progressive multiple sclerosis. I currently use a walker and a power wheelchair (the power wheelchair is handy when I need to go a distance as I am very slow with a walker.) I love to travel but worry that I may not be able. Should I learn to use a small, manual wheelchair? Or, can I travel with a power wheelchair?
You should keep traveling. Whether you need a manual or power wheelchair will depend on a lot of things, but you can definitely travel with both.
It looks like my grandfather is going to need a wheelchair. He frequently travels back to his country to visit relatives, so we need to figure out how he’s going to do so in a wheelchair. It’s good to know that some airlines allow medical bags on the flight for free.
I just wanted to know about the restrooms. How would a disable person be able to use the restroom.