They See Me Rollin: My Wheelchair Accessible Minivan

This post will be about my wheelchair accessible minivan, what adaptive equipment I use, why I chose them, and how they work. For more information on adapted driving in general read this post. To learn about our process leading up to the decision to get a wheelchair accessible vehicle read this post.

Wheelchair Accessible Vehicles (WAVs) come in many shapes, sizes, types and can have a range of assistive and adaptive equipment inside of them. Many people assume that they have to get a full sized or minivan in order to have a WAV, but thanks to the improvements in design and technology WAVs can now also be certain SUVs, pickup trucks, and even sedans! That being said, looks aren’t everything and certain vehicles will fit better for certain people and their lifestyle. For example, I was very exciting seeing all the SUV and sedan conversions but between the lack of passenger seating left in the sedan conversions and the smaller interior space of the SUVs, a minivan was best suited to my needs and I have very few regrets!

What I Have

I have a 2018 Toyota Sienna LE with a Side-Entry Power Fold Out Ramp (or TSLESEPFOR for short 😉 ). This means that the majority of my car is the same as a normal Toyota Sienna (engine, interior controls, body, last row of seats, and style) EXCEPT that the entire bottom of my car was ripped out and what they put back in is a lowered floor, the ramp, and a special rear suspension system.

Cool video about the modifications a car undergoes to become a WAV

There are several different companies that convert vehicles, the main two are Braunability and Vantage Mobility International (VMI), and a few different types of conversions. I am not going to go super in depth about each one, but more information can be found on the dealer’s websites as well as from an adapted vehicle dealer. The first main distinction is where the ramp comes out: side-entry (comes from the passenger side door) or rear (comes from the trunk). The second distinction is how the ramp comes out: manual or power and the third main distinction is the ramp storage: in-floor (flat ramp stowed outside of the car under the door and slides out) or fold-out (folds in half and sits inside the passenger door upright).

Things to Keep In Mind

  • Rear entry and manual ramp conversions will always be the cheapest
  • Different brands and types of ramps will have different: ramp angles, ramp widths, doorway clearance height, interior turning space, ramp weight limits, maintenance requirements etc. This can be overwhelming but speaking to dealers directly as well as your driving rehabilitation expert can help find the best solution for you
  • Different conversions will have different passenger abilities: passenger capabilities range from 1-5 (more if full size van) in seats, some conversions can accommodate multiple wheelchair users, not all will support the wheelchair user driving or being up front
  • Different ramp types may be more suitable for different environments: fold out ramps are easier to deploy onto curbs and uneven terrain but may track in dirt and water if you live in a rainy/snowy area, in floor ramps have the option to enter/exit passenger door without the ramp deploying/ getting in the way- may be a win if you have kids
  • Safety features: fold out ramps can be manually deployed from the inside in case of emergency and have higher side edges to prevent slipping off ramp, manual ramps often need a second person to deploy
  • Maintainability: power ramps require more regular maintenance than manual ramps, fold out ramps can often be less expensive to maintain

Why I Chose My Car Setup

After visiting several dealers, wheeling up a few ramps, looking at interiors, reading online, and process of elimination we were lucky enough to have this car mentioned to us and the pieces fell together. For me, I needed a side-entry vehicle because rear entry vehicles the wheelchair user sits behind the second row seats which would prove challenging to then get into the driver’s seat. I chose the power fold out because I liked that it could work as a manual ramp whenever needed, it would be easier to deploy onto curbs (key if parallel parking or in a city), it was cheaper than in floor, and had higher edges on the ramp to keep me from rolling off the side. Once we had narrowed it down to that, by happenstance this car popped up on our dealer’s radar. It had low mileage, was a Toyota Sienna, and already had a transfer seat installed in the driver’s seat!

Because I didn’t want to drive from my wheelchair, the transfer seat slides back into the middle of my van and turns allowing me to wheel up my ramp, lock my chair and transfer right into the drivers seat that came with the car. I then use switches that move me and the seat up to the driving position. It also works well to confuse everyone you park next to ;).

Picture of tan driver's seat in car with adapted hand controls and power base
Transfer seat, hand controls and steering knob

For hand controls, I use the Veigal Compact II Push/Pull hand controls- I push to brake and pull to accelerate. These are right hand mounted, which is not typical. These controls are made by a German company and are more often installed in non adapted vehicles as they can sit right next to the console and be out of the way. Typically, hand controls are column mounted (ie go through the steering column) and are operated with the left hand. Some disadvantages of this are that you are more restricted in your seat positioning, your drive hand is far away from the gear shift, they may have to make permanent modifications to your car to install (remove leg air bags etc), and the manual ones cannot be disabled for able bodied drivers.

Black Veigal Compact II Push Pull Hand Controls installed inside a car
Veigal Compact II Push Pull Hand Controls

Initially, the main reason I liked the Veigal Controls is they are on the right side and low down. I have less strength on my left side but good range of motion and the opposite on my right. Other benefits I have found are: they can be easily disabled for able bodied people to drive, they are inconspicuous, they don’t permanently modify the vehicle (except the holes in the flooring), they allow for the user to sit in a larger variety of places, they have a parking brake for changing gears or sitting at long lights, they are not fatiguing as you can rest your arm on the armrest, and they are very easy to use! Can you tell I like them? The last piece of adapted equipment I have is a SureGrip Spinner Knob which I have mounted on the lower left of my wheel and helps me turn the wheel with one hand. I like this one because it does not slide and the knob can be removed to be out of the way for an able bodied driver.

I plan to make a video demonstrating the features of my car, how I get in and how I drive with my hand controls and probably some better pictures. Thanks for reading!

Backstory

     Hello! My name is Julie. I am, in many ways, your typical  21 year-old college student. I am a junior at George Mason University. I love traveling, languages (learning my 8th now), movies, photography, nature, fixing things, and art. I live in the dorm on campus during the week and on the weekends I stay with my mom and work. During the school year I work part time as a support staff person for kids with special needs in camps and classes. My hope is to become an Occupational Therapist. I love it because it combines the problem solving and MacGyver-esque fixing with helping people and medicine. I also have been volunteering at a local free clinic doing medical interpretation as well as some administrative tasks for almost 8 years now.
I have an older brother who is now 23 and was my partner in crime throughout childhood. My mom and I are pretty close, we both like similar music, playing card and board games (when I let her win 😉 ), and watching movies. As kids, my parents took us on several international trips, but as we got older the traveling radius got smaller and smaller. That is until I caught the travel bug again in 2011. I convinced my mom to go back to Ghana with me. It was the first of many a life changing trips. Now we are all probably familiar with the new fad of “voluntourism”, and going to developing countries to “make a difference”. Well I was young and naïve and I thought I could change the world in the month I was there. Needless to say, I learned an incredibly important lesson about expectations and going with the flow. I think this has helped me in dealing with my illnesses. 

The next year I received a State Department Scholarship to study Arabic is Muscat, Oman for the summer. First off, I learned that having a severe food allergy to onions in a country whose cuisine is a combo of Middle Eastern and Indian is complicated. 
The first day of the program in-country I met with the Indian cook for the program, told him about all my allergies and how important it was that I don’t consume anything with ingredients I’m allergic to. The cook responds flabbergasted, “but ma’am, with no onions…no flavor”.  Needless to say having an anaphylactic reaction in the middle of the desert is nerve racking. After graduating high school in 2013, I made my way to Peru to volunteer in a clinic for one last hurrah before college. 
 
At the top of Mt. Machu Picchu
 So that’s the typical young adult part… but who wants to be typical anymore?
 
 I spent my freshman year studying Nursing at the University of Alabama Birmingham (UAB). Due to my work at the clinic and my good grades I was pre-accepted into the School of Nursing, just as my grandma had done there many years before me. I loved college, I loved my nursing classes, I loved my independence, and I loved the possibilities of what my life could be. Two weeks into school I woke up at 3:00 am in the ER. I didn’t remember getting there, what I was doing before, or going to sleep. I frantically pressed the call button until the nurse came in and explained to me that I had a seizure and have epilepsy. She paged the doctor and he came in, explained that they were going to start me on anti-seizure medication and have me follow up with a neurologist. Epilepsy. The nurse came back with my discharge papers. I laid there frozen for a few minutes till things caught up. I panicked. I remember calling my mom, my aunt, and my friends desperate for someone to pick up the phone in the middle of the night and tell me it was going to be okay. Finally, my uncle, a doctor in Oregon, picked up. He calmed me down and told me to hand the phone to my nurse or doctor. He talked with them and helped me make a plan. I had no idea that this was just the beginning. It was just like that moment in Ghana where I realized things were changing and there was only so much I could do.
            The rest of my freshman year was a battery of tests, hospitalizations, therapy sessions, and doctors visits. They ruled out epilepsy eventually with continuous EEG monitoring and passed me off to a psychiatrist who passed me back to the neurologist who eventually passed me back to the psychiatrist. You get the picture. By the end of the year I felt like I was 89 years old, not 19. After my freshman year ended I had to make one of the toughest choices of the year: drop-out of UAB, leave my friends and nursing school slot and move back to Virginia with my mom for treatment, or to continue trying to balance school (somehow managed a 4.0 my freshman year despite my health continuing to decline) and treatments with no support system within 500 miles. I chose moving back. I enrolled for online classes at my local community college and started making calls to specialists and doing my research. At that point, I was still having seizure like episodes, syncope, digestive issues, more frequent joint dislocations, severe migraines, breathing problems and severe allergies. Nobody could figure me out. 
I had one friend in the area, very little interaction with the outside world, and lots and lots of interaction with the medical world who gave me diagnoses of things like Munchausens, Conversion Disorder, “Just Anxiety”, Attention Seeking, “Abdominal Pain”, etc. I grew more and more frustrated and sick. Finally, a friend from high school mentioned Ehlers-Danlos Syndrome (EDS) and Dysautonmia/POTS (Postural Orthostatic Tachycardia Syndrome). She had been diagnosed in middle school. Having no idea what she was talking about I started googling the conditions. Things started to make sense. I was a pretty sporty kid, but spent most of the time on the bench due to injuries. A normal scrape for most people took months to heal and always scarred for me. Sitting still caused pain. Standing up made my head spin and I frequently passed out. Eating made my stomach hurt. Even after 2 years of braces and a permanent retainer on my teeth they still shifted right back to where they wanted to be. A shoulder injury in middle school put me in PT for two years with little improvement. Wait…normal people don’t have joints that pop in and out easily? I printed out the information on EDS and POTS and made an appointment with my primary care. I finally felt like I knew what was going on. I wasn’t making this up. This is real. My primary care breezed through the information sheets, looked up at me and told me, “you don’t have EDS, we would have seen it by now”. Seen it… an invisible illness… she didn’t see it. It felt like a dagger in my chest, but I didn’t give up. I made an appointment with the cardiologist my friend sees who is one of those world-renowned types who appears on talk shows and has people who traverse national boundaries to see him.  
Three months later after even more tests, he looks at me and says, “you definitely have POTS and EDS and a complicated case of it. I also think you have Mast Cell Activation Disorder and Cranio-cervical Instability (CCI). EDS and POTS have no cure but we will do our best to help you manage your symptoms.” I felt relieved and somewhat happy. Someone finally believed me. Ehlers- Danlos Syndrome is a group of connective tissue disorders in which the body produces weak and faulty collagen which is the “glue” that holds your body together. All of my joints dislocate very easily. I am extremely hypermobile. I bleed, bruise, and scar very easily. Additionally, my veins and organs are prone to rupture. I am in constant, severe pain. Since collagen is everywhere in your body, it effects so all body systems. POTS, MCAD, CCI, Gastroparesis, Arnold-Chiari Malformation, Migraines, Depression, and Anxiety (all of which I have) are just a few of common comorbid conditions that piggyback off EDS. POTS is a condition that affects my autonomic nervous system which controls heart rate and blood pressure. Normally, when a person stands, gravity pulls blood to the lower extremities. The nervous system senses this and sends a message to the blood vessels to constrict, sending more blood back to the heart and head. With POTS, this message to constrict does not get sent. Therefore, instead of the heart rate increasing by a normal 10 to 15 bpm upon standing, it can increase by more than 30 and can even double. By affecting circulation, it also affects cerebral blood flow. Symptoms include orthostatic intolerance (dizziness), chest pain, headaches, GI cramps, inability to focus and concentrate for long periods of time, inability to read due to blurred vision, difficulty with recall, extreme fatigue, nausea, gastroparesis (paralyzed stomach), tremulousness, insomnia, loss of consciousness due to loud noises/ flashing lights and much more. It can also present with seizure like episodes from extreme adrenaline rushes and hypoxia. At last, the real answer behind my non-epileptic seizures. MCAD causes hyperactive mast cells which release histamine bursts causing reactions such as hives, flushing, difficulty breathing, and anaphylaxis. I can react to just about anything (even heat and cold), and what I react to can change. I was newly diagnosed with Long QT Syndrome which can cause heart arrhythmias, syncope, and seizures. I have an implanted cardiac monitor that continuously monitors my heart for 3 years.
 
Fall of 2015, I started school at GMU and have enjoyed it. It allows me to have a part-time college experience close to home, and close to my medical team. I use a manual wheelchair with a portable power assist wheel to get around. I work 3-4 hours each weekend and in my free time I go to doctor’s appointments, color (when my fingers don’t dislocate too much), watch movies, go for rolls if the weather is nice, and hang out with my friends. On a good day, I can tackle the world. On bad days I need help with mundane tasks and can’t get out of bed. Did I mention my conditions fluctuate? Living with several rare diseases is like having Latin be your first and primary language. The language you operate in, think in, dream in. Now you know English too, but at times English seems so foreign. Naturally, those who understand you best as you would be those who also have Latin as their first language. They understand your struggles in trying to communicate your experiences to others, they understand that you’re basically operating on a dead language. If you want to talk to the pope, you’re set. Rare diseases and chronic illness can be isolating and overwhelming. They influence my life and can control it, but I refuse to let them define it. After all, I am a professional patient.