Here’s why I say 'no' when people ask if I need help

As a quadriplegic, I can’t do many things on my own. I’m what my social worker calls a “total assist.” From getting up in the morning to turning the page of a book, I need help with most daily tasks.

With that in mind, you would think asking for help would be second nature. But it absolutely terrifies me. These moments happen more often than you think. And it happens during different occasions and situations.

It occurs mostly during group activities. Someone will notice me perched in a corner or away from the group and ask if I need help.

I smile politely and respond with a calm, “no thanks, I’m good.” I normally don’t need help most of the time, it’s just me being introverted and shy. But there are moments when I actually do require assistance but decline help to avoid awkward interactions. Like when we eat meals in groups.

I dread attending events with food. For me, it’s a logistical nightmare. If I don’t have an aide or family member with me, trying to coordinate eating is a production, so I generally just avoid it altogether. There’s always someone who asks if I need help, but I always decline.

I am uneasy about it because a lot goes into assisting someone with eating and it’s not quite as simple as feeding a baby or child. Although it could get just as messy. When people ask, I’m afraid that they aren’t realizing what they’re getting into when they offer to help. So I decline since it’s the easiest solution.

After 25 years, you think I would have found a way to overcome this fear, but it is still very much at the center of my mind. I really do appreciate the offers for help, so I hope no one is ever offended when I decline assistance.

Maybe one day I can overcome that anxiety and be more open to accepting help from others. Until then, keep asking.

I became a quad 25 years ago. Here’s what my disability taught me.

It happened 25 years ago and I remember it like it was yesterday. I was 14 years old and fighting a cold. But on the early morning of Sept. 12, 1997, I stumbled out of my bed and into my parents’ room.

“I can’t breathe, I need to go to the ER,” I murmured.

My dad jumped out of bed and raced me down to the emergency room.

After being airlifted to a second hospital, I fell into a coma. Four days later, I awoke without the ability to move my arms and legs.

My life as a shy, quiet freshman in high school was no more. I was now a quadriplegic and scared out of my mind.

I would spend the next eight months in the hospital adjusting to my new life in a wheelchair. For the next 25 years, I navigated the highs and lows of being a person with a disability. I have learned a lot about myself and the world around me. Here are a few of the things I found:

• Patience is my superpower: When you rely on others for virtually every aspect of your life, you quickly develop a deep sense of patience. Whether it’s waiting for your strength to return or someone to change the channel on your TV, it has come in handy more often than you think.

• Never ever lose hope: It’s been two decades since I took my last steps, but I still try to move my arms and legs every morning when I wake up. Yes, my arms may never lift from my mattress, but that won’t keep me from trying.

• Success and happiness are a group effort: As much as I have accomplished over the past two decades, I couldn’t achieve any of it without my incredible family and friends. Their help has been invaluable and I will never be able to find enough words to thank them.

• Disability is not a death sentence: For years, having a disability has held a negative stigma. Being disabled meant you couldn’t have a fulfilling life or be happy. After being a wheelchair user for 25 years, I can safely say that couldn’t be further from the truth. Sure, having a disability isn’t ideal, but it doesn’t immediately mean your life isn’t worth living.

My life has taken plenty of twists and turns since I became a quadriplegic. I met some incredible people, saw some fantastic places and built a successful career. My disability has given me a valuable perspective for which I am forever grateful. 25 years have come and gone and I have learned so much. Here’s to hoping the next 25 years will lead to even more knowledge and growth.

22 years later: My strength may fade, but my hope never will

It’s that time of year. The month of September always brings around mixed feelings for me. Sept. 12, 2019 marks the 22nd anniversary of the day I became a quadriplegic.

I can’t believe it’s been over two decades since I lost my ability to move my arms and legs. It seems like yesterday when I was in the intensive care unit clinging to life. Looking back year after year, it is amazing to think about how I overcame such insurmountable odds. And while that was 22 years ago, my childhood is even farther away.

My life before I became sick seems like it was so long ago. One thing that always scares me is losing my memories from my childhood.

Not the actual memories of past moments, the sensory memories of my childhood. The feeling of the grass on the soccer field. The anxiety and thrill of attending a friends party. Or just simply walking around outside.

I know I had the ability to move around, but as the years go by, it’s harder and harder to remember what it was like to be “normal.”

As the years go by, I’ll continue to look back on my journey over the last two decades and reflect on all I have accomplished. While I may never walk again, my hope to regain my strength will never falter and I will continue to roll wherever life takes me in the meantime.

Fried fish, a wheelchair and an impromptu handshake

This is a thread about an encounter I experience all to often as a person with a disability.

Yesterday, I was eating dinner at a local fish place with my dad when a man came up to the table and asked to shake my dad’s hand.

“I just wanted to shake your hand and say it’s awesome what you do,” he said. “I have a son with a disability too.”

He then walked away. I’ve been through this before, but every time this happens, which is too many times, I am speechless and annoyed.

I get where he is coming from and he means no disrespect, but he brings forth an important lesson for me to teach my able-bodied counterparts.

I, and every other person with a disability who goes out in public, am not looking for a pat on the back or a gold sticker for doing something so trivial.

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Yes, my dad was helping me eat my delicious fried fish, but he wasn’t looking for recognition. We were simply doing something many fathers and sons do. Spend some quality time together over a good meal.

What’s worse is that he didn’t even speak or recognize me as anything other than a disadvantaged man in a wheelchair. And that is the root of the problem.

He didn’t even realize that I had just got off working an eight-hour day at the office and I wanted to treat my dad to dinner to unwind from a long day.

So the lesson? Yes, I’m disabled. Yes, people help me with most daily tasks. No, living a normal life like everyone else is not some incredible accomplishment that needs your recognition.

If you want to show your appreciation for me and those who help me navigate life, a simple “hello” will do. Above all else, I just want your respect and sense of belonging. No award is necessary.

A Disability Fee?

This morning, I needed to have my wheelchair-accessible van sent to the auto shop for repairs. I normally am finished with work around 1pm, so I asked the mechanic to have the repairs done by then and he said it should be completed by the afternoon. 

About two hours before I was ready to leave, the mechanic told me that the repairs wouldn't be complete until 2pm. 

But that isn't the biggest conflict of this story. Since my van was out of commission, I was forced to find another way home. After brainstorming possible scenarios, I decided to take a cab home. 

I pulled up the number for Yellow Cab to arrange to have a wheelchair-accessible taxi pick me up. Once I got through to the operator, it was only a few minutes before I had a ride arranged. 

A few moments later, the taxi driver calls to tell me he's here to pick me up. It didn't take long before I was strapped in and ready to hit the road. 

I made it home a few minutes later and as I was getting ready to pay the fare, the driver drops this bomb on me:

"That'll be $57," he said. 

If I could, I would have fallen out of my chair then and there. I proceeded to ask why a 15 minute trip cost almost $60. 

The driver tells me that the mileage only cost around $30, but I was charged a $25 pick up fee because I was in a wheelchair. 

You read that right, there's an extra fee just because I am a person with a disability. The driver didn't get into the specifics about why that fee was in place, but he did tell my mom and I that he'd give me a "break" next time. He shouldn't be so generous. 

It's things like this that make using a wheelchair so difficult. People wonder why they don't see so many people with disabilities out and about and this is s big reason why. Many of those with disabilities are on fixed incomes, so getting around become nearly impossible when every time you want to go out, it'll cost nearly $100 just for a ride. 

This needs to change. Accessibility is an important part of being able to live as a person with a disability, so what happens when you can't even afford the access?

I understand the need to make a buck, but charging people with disabilities an extra fee just because they use a wheelchair is just plain wrong.

My First Car

My first car, I shall call her Dalia.It's a right of passage that every teenager dreams of, getting their first car. It signals the beginning of their new found independence and and symbolyzes a new transition to adulthood. Whether it's a beat up 1986 Volvo or a 2012 Range Rover, you can't keep the pride from beaming across their smiling faces.

Just like every other bright-eyed teenager, I to dreamed of the day I would receive my very own car. Unfortunately, the first set of wheels I ever received were attached to a Quickie electric wheelchair, so that dream was put on hold.

Ever since I became sick at 14, I wondered if I would ever get the chance to have my own car. I often thought about the first time I would get behind the wheel, but for now, a joystick would have to do. 

It was a little late, but at 28 years of age, I finally was able to purchase my very first car, a cherry red 2006 Dodge Grand Caravan. Along with its firey color, a grey pinstripe runs down the middle of the body and hood scoops sits on the hood. It's definitely a muscle car trapped in a mini-van's body, and it has my name written all over it.

I was so proud of myself when I got the van because owning a car as a person with a disability is no easy task. Since I am in an electric wheelchair, it's not like I could just buy some clunker to get me from A to Z. I needed something that was accessible, and the wheelchair lifts alone cost $13,000-$15,000. So the cheapest used car I would get would be around $22,000. I guess they forgot to let me know that you need to be rich if you're going to be disabled.

If able bodied people are allowed to purchase affordable modes of transportation, the same should be afforded to people with disabilities. I am one of the fortunate people with disabilities to have a job and salary that allows me to have my own car, but many people in my situation can not afford spending $20,000 - $50,000 on a car.  If there was one thing I could change, it would be to make handicapped vans more affordable.

My first car is someting I'll always cherish and remember. It is a symbol of my success and independence, and I hope that one day this experience can be more of a reality for people with disabilities.

My New Year's Resolution for 2012

See John, you were worried for nothing.Well, the calendar finally reads 2012 and it looks like the Mayans and John Cusack has us all worried over nothing. Since the world isn't coming to an end, I guess it's time I made my new year's resolutions. Along with the cliche resolutions, losing weight, saving money, and being happy, there is one that I've made a priority for 2012.

Be more consistent with my blogging and do more writing.

I've had my website for years, but I haven't been very good at posting regularly. If I'm going to have the site, I might as well make the best of it.

So this year, I will be more proactive in my blogging and be better at keeping to my writing. I've chosen writing as my career path, so it's time I stayed committed to honing my craft. I will be posting about living life with a disability and all my experiences along the way.

There will also be random posts about my hobbies and passions, so keep an eye out for those as well. Hopefully I will continue to develop my voice while posting entertaining and informative posts. My life has been a crazy ride over the past 14 years, and I have plenty of stories to share.

Well, here goes. Hope everyone has a great 2012 and be sure to check back for more updates!

My Life with a Disability

Here is a video interview I created for a contest I entered. I share my perspective on living my life as a person with a disability. Thank you to David Portillo for shooting all of the footage for this project.

The background song is "Your Hand in Mine" by Explosions in the Sky.

Nike Ad Shows Strong Perspective for People in Wheelchairs

The new "No Excuses" ad from Nike brings a refreshing perspective to people with disabilities. Featuring UW-Whitewater Wheelchair Basketball Player Matt Scott, the ad shows Scott from the chest-down, moving around the basketball court. Scott is reciting various excuses as he rolls around the court until he stops and says "yeah, and my feet hurt" as he rolls away. It is a very poignant clip with a great message. Check it out.

The View from Section G

The view from Section G at Chase Field is absolutely breathtaking. You are mere feet from home plate and are up close and personal with all of the athletes, coaches and umpires. Along with the great view, you can actually hear conversations between the players, even the colorful, foul-mouthed screaming from the home plate ump and Giants Manager Bruce Bochy could be heard with amazing clarity. Not only that, you can even feel the slight mist of chew spit as Pablo Sandoval, a.k.a. Kung Fu Panda, hocks his chewing tobacco in the batter’s box. In case you didn’t know already, say away from tobacco. It’s a tumor-causing, teeth-staining, smelly, puking habit.

Here is a pic and video from my seats at the Arizona Diamondbacks game against the San Francisco Giants on 5/20/2010. The view from Section G at Chase Field is absolutely breathtaking. You are mere feet from home plate and are up close and personal with all of the athletes, coaches and umpires. Along with the great view, you can actually hear conversations between the players, even the colorful, foul-mouthed screaming from the home plate ump and Giants Manager Bruce Bochy could be heard with amazing clarity. Not only that, you can even feel the slight mist of chew spit as Pablo Sandoval, a.k.a. Kung Fu Panda, hocks his chewing tobacco in the batter’s box. In case you didn’t know already, say away from tobacco. It’s a tumor-causing, teeth-staining, smelly, puking habit.

Gross and vulgar habits aside, these are great seats for people with disabilities who are looking for wheelchair accessible seats. But that is expected from $150 tickets. One thing I must say is that you definitely need to have your head on a swivel. I was almost pegged by two foul balls, one was a pop fly and had plenty of time to move, but the other was a screaming line drive. The railing in front of me did its job marvelously as I avoided any serious injury. But foul balls are simply a part of the game.

If you are a little leery of the price or danger of foul balls, I recommend sitting in section 105-W in right field or 145-W in centerfield. They are both good alternatives and are awesome and cheap sections with accessible seating.

By the way, the Dbacks won the game 8-7.