The family van, a community affair

If you follow hQo project on Facebook (shameless plug, you should totally follow us on Facebook!), we talk a lot about Tan’s need for a handi-accessible wheelchair van for his independence. It’s a topic we both gravitate to when out networking and talking to others in our mission to spread awareness and build the hQo community of supporters. It was even the topic of Tan’s video submission in NMEDA’s first annual Local Heroes contest that Tan entered back in 2012. What a lot of you probably don’t know is that as Tan continues this journey to buying a van that meets his needs for independence, he’s also considering the needs of those around him.

Now you may automatically think that it’s me that I’m talking about, but it’s not.  No, the other people that I’m talking about, the others in his life that Tan is considering and asking questions about as we move along in this process, are my grandmother and other quads in the community.

Shortly after we were engaged, my grandmother began having a series of strokes that very quickly led to loss of function of her limbs and even vital processes like the ability to breathe on her own. Doctors finally found the culprit; a large grapefruit sized tumor in her pituitary. The tumor was removed but the damage from the strokes leading up to the surgery and a grand mal seizure that resulted in another stroke during the operation has left my grandmother wheelchair bound. Tan has long been an advocate for my grandmother, going to doctors appointments with us when she was sick, and even traveling with me to Gainesville as my grandmother went into surgery. To this day, Tan is the one who plans holidays spent between our two families around us taking my grandmother out of the nursing home she lives in for the day. See, without a wheelchair accessible van, my grandmother, like Tan, is home bound.

Over the years, we’ve become the emergency contact for many quads in our community. Rehabilitation and service specialists, and even our own apartment complex management, has called us at all hours of the day sending out an S.O.S. Wheelchairs are a complex network of mechanical and computer engineering that is prone to malfunction…and they do so often. But that’s not surprising when you think about how much a quad or paraplegic uses their wheelchair for mobility. It’s not an understatement to say they literally live in their wheelchairs. Without transportation a person dependent on a wheelchair for their mobility is left using their wheelchair like a car–speak with any Rehabilitation Specialist or manufacturer and they’ll tell you, that’s not what wheelchairs are designed for. Here’s the thing, a wheelchair is designed for mobility but they aren’t designed to take road trips! Imagine that. But if you’re like our neighbor’s Gabriel, Sean, Amanda, or the cute little girl who lives at the front of the complex, none of whom have a wheelchair van and all of whom live independently, their wheelchair IS their only method of transportation. Drive down Frankford Avenue or 23rd Street and you’ll see one–or even all–of them in their wheelchair making the long trek to Walmart in one direction or Winn-Dixie in the other, or to their doctors appointments, or to the mall even further up the road. When their destination is too far, you’ll see them making the trip from one trolley stop to the next. All of this is done whether it’s blistering heat or a polar freeze, torrential rain or blinding sun. It becomes a science for them, figuring out how many miles to the charge their wheelchair battery can take before the chair dies.

Then comes the phone calls. A wheelchair breaks down. The rain becomes too hard to drive their not so waterproof wheelchair in. The wheelchair battery has died or become disconnected or fried! The range of problems that can happen is never ending and it’s a new one every time. Rehabilitation Specialists who repair wheelchairs will call us on the road asking us if we could pick up their stranded client. Sometimes the wheelchair user is someone we know and they’ll call for help. Other times they call us having gotten our number from another quad we’ve helped or some ADA professional we both know. And every time Tan’s response is the same, “We’ll be right there.”

No questions asked. No explanations needed. Tan will literally make us drop whatever we’re doing to go and pick this person up and drive them home. What does that mean for me? It means I’m the one pushing or pulling this person and however heavy or light they and their wheelchair are, up onto a wheelchair lift, holding onto them with sheer will and bodily force as the lift goes up, and then maneuvering the wheelchair so that not one but two wheelchairs fit in the van. And  let’s just be honest here, two wheelchairs doesn’t always fit in the beast of a van we drive. That means Tan takes the place of this person, sitting outside in whatever weather conditions might be, so that I can drive this person to their home, broken wheelchair and all, and the potential that I could be physically hurt in the process from lifting or  transferring this person. Aside from my own physical pain, without me Tan puts his own health, comfort, and medical care at risk.

So why does Tan do this? Because he knows this could be him someday. Because there isn’t a taxi service in Panama City that could be called with its very own wheelchair accessible van that could do the job. Because we can’t really say no to the other person on the end of the line, whether its the quad in need or the professional asking for them, because one day we could need something from them. Because saying no is kinda mean, and nobody wants to be that guy.  Nope. Honestly speaking, those would probably be my answers. No, Tan’s reason is simply because. He just can’t fathom a reason why there would need to be reason. For all the reasons I could see our own need, Tan sees that there are always people who are in more need.  You help them because.

For Tan, this journey to a handi-accessible van is about freedom; it’s about having safe transportation that he can independently drive and enter and exit all on his own, something he’s never been able to do since his injury. But that reason is only the surface. Below that all, Tan thinks about my independence as his wife, to be able to leave him and do things on my own without worrying about him and what happens if he needs [fill in the blank, just about everything applies!]. He thinks about the needs of his family if they need to travel and do so safely and dependably. He thinks about my grandmother in her wheelchair and giving her the opportunity to leave the nursing home and be with family. And he thinks about all the quads we’ve met and what happens to them when there is no body else who can help them in a community that has little to no provisions for wheelchair transportation. Have you ever had to think that much to buy a car?

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