Posts By: Tamara Morgan

Tamara Morgan is an art therapist and social worker in the South Bronx and a graduate of NYU’s Steinhardt School for Art Therapy. Diagnosed at birth with osteogenesis imperfecta, a condition that makes her bones abnormally fragile, Tamara writes about conquering NYC as an individual with a disability.

Tamara Morgan wheelchair airport

Wheels For Life

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Posted & filed under Getting Away, Transportation.

A few months back, I posted a column about my enormous fear of flying. The thought of being in a vessel that I could not control and the fact that my wheelchair would be taken off to some darkened underbelly frightened me beyond belief. Today, I can happily say that my fear of flying has been conquered twice.

I will admit that in the days leading up to my flight, I remained quietly mortified. I thought of all the things that could go wrong. Would my wheelchair get off the plane in one piece? What would happen if I broke a bone in flight? Thankfully, none of these catastrophic things happened at all. In fact, it was quite the opposite (for the most part). The night before my flight, I said goodbye to my loved ones. I did not want to let them in on how nervous I really was. There was no reason to plant the seed of fear in them about me traveling. I said an extended prayer before going to sleep that night.

On November 13, 2012, I woke up, gathered my belongings, and headed to the airport. I arrived at LaGuardia Airport via Access-A-Ride. Although I was dropped off at the wrong terminal, my travel companion and great friend Alex Truesdell still managed to meet up with me. Together we boarded a shuttle bus for the right terminal. We arrived at Terminal C, checked our luggage, got searched, and then sat down and talked for a few. On our boarding passes, it stated that we could board the plane early, which I thought was nice a gesture. I had envisioned the plane packed with many people.

Then a TSA worker came to take my wheelchair to the cargo area of the plane. I began to feel a large knot forming in my throat. In that I moment, I decided that I had to take control of my fear. I said, ”Tamara you can do this, your wheelchair will be safe. You are going to Ohio for a great honor and experience, so let’s do this!” As I was rambling on in my head, the TSA worker said that it would be okay and that he’d take good care of my chair. “How do you operate it?” he asked. That was all the reassurance I needed. This gentleman made me feel as though he understood how important my wheelchair was to me, and that he wanted to do his best to make sure it was cared for appropriately.
I was then wheeled onto the plane by a flight attendant. Alex followed closely behind and when we finally arrived at our seats, my anxiety was a distant memory. I was happy and proud that I was taking this step. Taking off, landing, and looking through the window were the highlights of the flight for me. I felt emotionally and physically free while in the air.

When we arrived in Ohio for the OCALICON conference, we met some of the friendliest and most warm-hearted people I had ever come across in my life. It felt nearly surreal. Being accustomed to the pace and vibe of New York, Ohio was a breath of fresh air. I now fantasize about Ohio as my new home town.

Wheels For Life

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Posted & filed under General, Transportation.

Sorry to disappoint, but this blog is not about the fabulously risky and sexually charged novel by Erica Jong. No, the title simply refers to my actual fear of getting on an airplane.

In all my 27 years, I’ve never traveled by plane. If I have to travel far, I take a train or boat. I’m usually one of those people who is all about positive thinking and optimism, but when it comes to flying all that goes out the window. I’m basically a wreck.

In November, however, I will have to conquer my fear. I’ve been invited to speak at OCALICON, an autism and disabilities conference in Columbus, Ohio. It is an all-expense paid trip that was organized by OCALI (Ohio Center for Autism and Low Incidence), and the hotel reservations and flight plans were taken care of for me. I am excited to speak at my first national conference, but the thought of making it there in one piece nearly overshadows the mission itself. What happens if the plane hits turbulence or the pilot loses control of the plane? Who would help me and how would I survive? I am afraid that I won’t be able to help myself.

I have read many of the statistics about how safe flying is compared to other modes of travel. According to the Bureau of Transportation, 1.73 million people fly each day. That’s 631,939,829 people in the air every year. The Bureau reports that the likelihood of a plane crashing is one in a million. I have images stuck in my head though, from television broadcasts of terrible plane crashes. The stories and pictures are so vivid that they make it hard to find comfort in the minuscule numbers.

I do believe that I will be able muster up the strength to travel despite my nerves. Thankfully, I will be flying with a dear friend, so I won’t be alone. I am hoping that once I have one positive experience on an airplane, my fear will diminish and I’ll be brave enough to fly more often. Until then though, my fear is firmly in place.

 

WHEELS FOR LIFE ~ From a Caddie to a Hooptee

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Posted & filed under General.

Four years ago I got a Permobil wheelchair, which I nicknamed my Cadillac. I remember the first day I took her for a spin—I was amazed by how seamlessly she turned and how smoothly she traveled, not to mention her hydraulic seat lift and front and rear-wheel headlights and blinkers. I couldn’t believe how independent I could be, and I began to travel more and more on my own. I felt unrestricted with my Caddie, and I still do.

As with any electronic device, however, my Cadillac eventually experienced technical difficulties (see Broken Leg, 5.1.12), and after three months of delays, my chair is now finally being taken away for servicing. That means I’ll have to say a temporary au revoir to my Permobil. I have no idea how long it will take to get her back.

In the interim, I will be returning to my hooptee, the chair I used from tenth grade through junior year in college. When I got my hooptee, I thought that she, too, provided tremendous independence, but I eventually learned that she was quite limited. I didn’t realize at first that the hooptee was not meant for everyday use, something I found out when screws began falling off when I hit bumps. As time went on, my hooptee’s speed decreased and eventually she froze whenever I tried to go left or right. The only way my hooptee turns is by pressing the the joystick over and over again.

Now that I’m back with my hooptee until my Caddie is fixed, I’ve been thinking about how accustomed we can become to nicer things. For years I thought my hooptee was great; now I can’t believe I ever drove her around. If I’d never gotten my Caddie, I wouldn’t be nearly as critical toward my hooptee today. And I shouldn’t forget that my hooptee taught me a very important lesson, namely how to deal with malfunctions, which are bound to occur no matter how wonderful a chair—or anything else—initially seems.

Still, I hope my hooptee is back in the closet before I write my next post.

Tamara Morgan is an art therapist and social worker in the South Bronx and a graduate of NYU’s Steinhardt School for Art Therapy. Diagnosed at birth with osteogenesis imperfecta, a condition that makes her bones abnormally fragile, Tamara writes about conquering NYC as an individual with a disability.

Tamara Morgan Profile Picture

Wheels For Life

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Posted & filed under Humor.

Four years ago, I got a Permobil wheelchair which I nicknamed my Cadillac. I remember the first day I took her for a spin—I was amazed by how seamlessly she turned and how smoothly she traveled, not to mention her hydraulic seat lift and front and rear-wheel headlights and blinkers. I couldn’t believe how independent I could be, and I began to travel more and more on my own. I felt unrestricted with my Caddie, and I still do.

As with any electronic device, however, my Cadillac eventually experienced technical difficulties (see Broken Leg, 5.1.12), and after three months of delays, my chair is now finally being taken away for servicing. That means I’ll have to say a temporary au revoir to my Permobil. I have no idea how long it will take to get her back.

In the interim, I will be returning to my hooptee, the chair I used from tenth grade through junior year in college. When I got my hooptee, I thought that she, too, provided tremendous independence, but I eventually learned that she was quite limited. I didn’t realize at first that the hooptee was not meant for everyday use, something I found out when screws began falling off when I hit bumps. As time went on, my hooptee’s speed decreased and eventually she froze whenever I tried to go left or right. The only way my hooptee turns is by pressing the the joystick over and over again.

Now that I’m back with my hooptee until my Caddie is fixed, I’ve been thinking about how accustomed we can become to nicer things. For years I thought my hooptee was great; now I can’t believe I ever drove her around. If I’d never gotten my Caddie, I wouldn’t be nearly as critical toward my hooptee today. And I shouldn’t forget that my hooptee taught me a very important lesson, namely how to deal with malfunctions, which are bound to occur no matter how wonderful a chair—or anything else—initially seems.

Still, I hope my hooptee is back in the closet before I write my next post.

WHEELS FOR LIFE ~ My Responsibility

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Posted & filed under General.

Sometimes I’d rather forget my past and move on with my life. At a recent speaking event, however, I was reminded just how important talking about one’s childhood can be.

New Alternatives for Children asked me to speak at a foster care forum hosted by the New York City Administration for Children’s Services. The forum was designed for prospective foster and adoptive parents to learn more about the process, and a key aspect would be a discussion of adopting and fostering children with special physical and/or mental needs.

It’s easy to imagine all the challenges that might come with raising someone with unique needs. I wanted to let the prospective parents know that, aside from all the woe, there’s also an enormous reward. Another gentleman and I shared our stories to a crowd of over 50 people. Thirty of those fifty decided that they wanted to continue on with the process.

The statistics of how many children are in the foster care system are probably as foreign to you as they were to me. There are currently about 400,000 children and youth in the foster care system nationwide. Of those 400,000, roughly 30-40% (120,000-160,000) have disabilities. Often a physical or cognitive disability makes placement much harder.

It is imperative that I continue to spread the word about foster care and adoption. A loving foster family cared for me when my biological family could not, and they forever changed my life. I have a responsibility to let families know just how important foster care and adoption can be.

Tamara Morgan is an art therapist and social worker in the South Bronx and a graduate of NYU’s Steinhardt School for Art Therapy. Diagnosed at birth with osteogenesis imperfecta, a condition that makes her bones abnormally fragile, Tamara writes about conquering NYC as an individual with a disability.

WHEELS FOR LIFE ~ Round-trip to Albany

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Posted & filed under General.

Several months ago I was invited to Albany for a screening of Among the Giants, a documentary by Adaptive Design. Adaptive Design is an organization that works to create adaptive technology for children with disabilities, and I was featured in the film. The New York state legislature was scheduled to attend, and I was honored to be a part of the festivities. I felt like I’d be representing all the children and families that have been touched by Adaptive Design, and I wanted to communicate the needs of organizations like Adaptive Design and to the state government.

The journey to Albany was my first trip beyond New Jersey. I was eager to see the scenery on the way to Kingston (first stop—picking up filmmaker Cory Tomascoff) and then Albany. The accessible van arrived almost an hour late, and I was nervous that we wouldn’t make it on time. I reminded myself that there are always setbacks and moments that are out of our control, and I decided not to let this detail deter my mission (even if it meant arriving after the event began). As we drove, I thought about what it would be like to have a car of my own.

As we got further and further away from NYC, I saw plush trees and grass, farms, and deer. My perspective began to grow the closer we got to Albany. I never expected, in my wildest dreams, that I’d be given this kind of opportunity. If I knew anything at all in that moment, it was that I was thankful and blessed. I was about to advocate for people with disabilities and the organizations that support them. I also wanted to communicate the idea that we are our brother’s keepers; I wanted to let the legislature know that they have responsibilities.

The conversations that took place after the event continued for so long that we were finally asked to leave the conference room. I’m hoping that our presence will get Adaptive Design (and the people they serve) more support, funding, and acknowledgement.

Tamara Morgan is an art therapist and social worker in the South Bronx and a graduate of NYU’s Steinhardt School for Art Therapy. Diagnosed at birth with osteogenesis imperfecta, a condition that makes her bones abnormally fragile, Tamara writes about conquering NYC as an individual with a disability.

WHEELS FOR LIFE ~ Broken Leg

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Posted & filed under General.

For the past month, I have been dealing with what I call a broken leg. However, this particular broken leg does not call for plaster, bandages, or a stay in the ER. Instead, it requires wires, hardware, and screws. I am experiencing a malfunctioning wheelchair.

It all began when I noticed a random pattern of flashing lights on my joystick. I was heading to Madison Square Park to meet with a film crew to do a television spot. I prayed that the lights would stop and that my chair would de-elevate so that I could continue on my way. In a nearby bathroom stall, I used my novice mechanical skills to jiggle wires and unplug cables. The lights would not stop blinking and changing colors, and my seat would not go down, but I had to continue on because it was too late to cancel. I called a friend to ask her if she would join me just in case my chair broke down completely, and thankfully she agreed. I drove down Sixth Avenue with my seat five to six inches higher than usual. I was able to film my segment, but it was just the start of my wheelchair drama.

I contacted my managed care service providers to inform them of the issue. I had responsibilities at work—supervision meetings for starters—and unlike a real broken leg (which I know far too much about), when a wheelchair breaks there is no second “leg” to stand on, no other functioning back-up chair. When my chair shut down twice one day as I crossed the street, I decided that I’d better stay home and start advocating for a repair. A technician came to my home at the end of the week to assess the issue and told me that I would need a whole new joystick (my second joystick replacement in two and a half years) and new tilt box. I am happy to report that the parts have now been ordered.

Knowing that the device I rely on for my mobility is not sound is nerve-wracking. I once had to give up my chair for an entire month while it was being serviced, and I was unable to do any independent activities—going to the grocery store, spending time with friends, going out to eat, sitting in the park. It is at times like this when I’m incredibly grateful for motorized wheelchairs. It is also at times like this when I wish I had a magic wand that I could wave about and make broken things whole again. Until then, I will continue my work as a novice mechanic and try to temporarily fix my joystick while the real mechanic works to fix my broken leg.

Tamara Morgan is an art therapist and social worker in the South Bronx and a graduate of NYU’s Steinhardt School for Art Therapy. Diagnosed at birth with osteogenesis imperfecta, a condition that makes her bones abnormally fragile, Tamara writes about conquering NYC as an individual with a disability.