Once I moved past being proud of her decision to take part in the retreat, I became curious about the idea behind the organization. I’ve heard the adage that misery loves company, and I understand wanting to talk to people who can identify first-hand with your experience and feelings. So imagine my surprise when, days later, I saw someone in Starbucks who’s limp and pronated foot mirrored my own and, though I noticed our similar symptoms of CP, I said nothing.

I chose not to bond with someone over a shared experience. Why?

Was it embarrassment? Fear? Awkwardness?

The practical answer is probably that the person in question entered a Starbucks for coffee, or maybe a snack — certainly not an ambush of disability-focused camaraderie. If there was any bonding to take place, it’d be better to have it stem from the misspelled names on our cups or the odd coffee-shop lingo that sounds entirely foreign.

Yet, given the choice, I don’t think I’d go to a disability support group. I wouldn’t voluntarily begin conversations about the oddities of living with CP or any other impairment. I’m trying to picture how it would go.

Me: “Hey….so….you have some trouble with curbs, too, huh?
Other person: “Yeah.”
Me: “Yeah, bummer.” [long, awkward pause] “Hey, that’s a nice [insert article of clothing or jewelry here]. Where’d you get it?”

From then on, I can only assume the conversation would be about clothes or other surface topics. That would be….not the point of it, right? I suppose when I felt comfortable enough I would air a frustration or two, though my main stresses right now are job related. This is not what the support group intended.

One of my friends from college is deaf. If we ever talked about our respective disabilities, we often had different points of view and different reactions. It was more of a debate club than a support group. We’re friends because he’s funny and kind and he liked to talk about movies. At no point did I ever think, “Oh, well, I should find a disabled person to be friends with so that someone can understand me. Hey! Here comes a deaf kid. I’ll go say hi.”

I’m lucky that I have family and friends who are willing to listen when the disability becomes upsetting. They do what they can to mitigate problems. They try their best to understand and empathize. Without them, it’s likely that I’d find a support group to be helpful. For now, though, I’ll thank those who love me for your time and your patience. As for the rest of you, I’m always in the market for a new friend — disabled or otherwise. If you like movies and music and animals, we’ll get along fine.

I have mixed feelings about the show. The premise concerns me slightly.  Ostensibly, the program will show viewers that Abby and Brittany Hensel are people with the same feelings, dreams, hopes, and concerns as every other 22-year-old college graduate. Part of me wonders, though, if they’re being put on TV as the modern version of a freak show — and I’m not alone in that worry. Why else would an article about the series appear in the “Weird News” section of HuffPo?

I’ll admit that I enjoy watching the show, just but I think that the effect the show has will depend on the viewer. Some people will enjoy simply learning about the intricacies of a conjoined existence (like this) and others will find the value merely in making punchlines out of the unusual circumstance. For those people, Gawker has you covered.

I wonder, though, why conjoined twins get a prime slot on television with a full advertising blitz, but the Paralympics are mainly ignored? I started thinking, and I believe that this shows an upsetting pattern in how society views people with disabilities.

Here’s what bugs me. It seems that people love to talk about how inspirational and motivational and determined people with disabilities are, but they only want to see these people portrayed in one specific way. It seems to me like people are only interested in seeing people with disabilities be struggling to fit into a “normal” world every day, trying so hard to prove how “regular” they are to everyone and all the while making statements of “I’m just like you.” In fact, in the opening credits of their show, the Hensels make a very similar statement.

Case in point: much was made of Oscar Pistorius, the amputee Olympian from South Africa that made it to the semi-final round of the 400 meter race this summer in London. Pistorius had so impressed his competitors that the winner of that heat, Kirani James of Grenada — who would eventually win a gold medal in the event — switched name tags with him, a sign of honor and respect. The media had specials focusing on his story of raw determination and effort. After all, he was a man with artificial limbs who could hold his own in Olympic trials against able-bodied runners. He is, without question, an elite runner. He is among the best in the world.

And then there are the Paralympics — a whole field of athletes like Pistorius. There would be no shortage  of inspirational stories and unbelievable footage. Yet, nobody covered it for the American media. If I had to hazard a guess, it would be because the disabled runners were competing among others like themselves.  There was no clear underdog, no single poster child for perseverance. Therefore, the media outlets thought there was no story.  After all, these athletes weren’t struggling to be normal and they weren’t comparing themselves to able-bodied competitors. Instead, they fully acknowledged their limitations while testing the abilities they do have at the highest possible level. It is the acknowledgment, though, which makes their achievements less astounding to a mainstream audience.

This is a shame. People with disabilities deserve notice, kudos, and respect form society even when they are not trying to prove themselves to the non-disabled population. Perhaps it would be a step forward to break free from the typical archetype of the Noble Invalid. Instead, show us how we are: funny, brave, greedy, kind, angry, obnoxious, intelligent, whiney, silly, compassionate, and lazy, for starters. Sometimes we are all of these things at once. People who love me beyond measure have, in fact, called me dramatic, cowardly, and foolish (in moments that were obviously not my finest). In that way, we really are just like you. To boil the entire population down to a one-dimensional figure who is always strong and steadfast is to make us caricatures. To make us human, show all sides — even, or perhaps especially, the unflattering ones.

If television could manage to do this, then perhaps shows focusing on conjoined twins living day to day would be unnecessary, and competitions like the Paralympics would be worth a slot in prime time.

Yes, I’m still here, and yes, I’m embarrassed that my once-weekly blog has devolved into a quarterly one, it seems. As usual, I apologize and offer the hope that I’ll soon be posting regularly again. The difference, this time, is that I fully intend to do so.  In the meantime, thank you all for your patience.

Since I last posted, I’ve seen a few movies (thanks to streaming), been to a Jackson Browne concert (thanks to a friend), and checked out a Yankee game from just behind home plate (thanks to a SERIOUS, and seriously random, upgrade in my tickets). I’ve also gone to a museum exhibit, and had a few cups of coffee. It sounds great, doesn’t it? I’m embarrassed to admit, however, that I’ve wasted much of my time on bad television and stress and anxiety. So much so, in fact, that I was unable to write a blog post out of fear that I had nothing to say, that I wouldn’t say it right, that it wouldn’t make a difference, etc.

I recently had yet another cup of coffee, this time with an unofficial mentor of mine whose writing and advice I greatly respect. Though the conversation was more about catching up than it was about anything else, he had some words of wisdom for me. “When you have the time, you don’t have the money. When you have the money, you don’t have the time,” he said. “I can’t tell you how many hours and days I wasted worrying about getting a job when I should have relaxed and enjoyed the time when I could.” Now, there’s a small chance that my anxiety will dissipate entirely (confession: my third grade teacher once told me that I’d be the first 11-year-old with an ulcer. No ulcers yet, but my back pain persists), but I understood his point. 

His gentle nudge was reinforced just a few minutes later, after our visit ended. I called my cousin, explaining that I had a couple of hours to kill before my train to my parents’ house left Penn Station and I didn’t know what to do with my time. I was on the Upper West Side.  “Why don’t you just start walking to Penn Station?”  I considered this: I was at 85th Street, a good 2 miles away. I had a backpack with me that weighed God-knows-what. I had a scab on my knee from my most recent fall (for those of you keeping track, I have yet to win my bet with my parents — 6 months without falling. The new end-date is February 7th. Wish me luck). It seemed very unlikely that I’d make it to Penn Station on foot, unscathed. 

I doubted my success for that endeavor just as I doubted my ability to restart my blog, to get a job, to turn my passion into a career.  With all this doubt about how it would work out in the larger picture, I’d forgotten to focus on right now. I forgot to look at individual trees because I was too worried about trying to see the entire forrest. I couldn’t worry about that or I’d never get anywhere. I had to just do it, like the old Nike commercials.

I ended up walking from 85th and 7th to 42nd and 7th, balance maintained. I would have made it to Penn Station if I hadn’t gotten stuck in Times Sq. behind a crowd of tourists from East Bumblefuck who decided to walk (or, more accurately, stroll leisurely) in a group that blocked the sidewalk. Forgive me for my momentary hypocrisy, readers, but seriously, they were slow and unaware of the space around them. If I’d continued walking, I’d have missed my train. 

I walked about 2 miles. Not bad for a former 10 K runner who hadn’t exercised in about a year. I wrote a blog post. I don’t know if these things will work out in the larger sense, but for right now, I feel pretty good about them. 

The plan, as of now, is to take things one step at a time and make the best of how things are. I’ll send out applications and write blog posts regardless of public response, or lack thereof. I’ll also turn off the TV (I really don’t need to see that Project Runway rerun again), and go check out a new neighborhood or see the zoo, putting one foot in front of another until something gets done.

My hope is that this post inspires you the way my cousin and my mentor inspired me. I hope this is a gentle nudge to try the thing you’ve been putting off due to fear and doubt and insecurity. Good luck. 

It has been said, specifically by Rob Lowe when he played Sam Seaborn on The West Wing, that good writers borrow from other writers and great writers steal from them outright. I aspire to be a great writer.  Therefore, I’ve put together a list of quotes (all said by other people, of course) that relate to parenthood and disability. Read on and enjoy. Happy Mother’s Day, everyone!

“You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil … you are the mother, advocate and protector of a child with a disability.” -Lori Borgman

“Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.” -Bill Cosby

“With special-needs parenting, there are always more things you have to think about and more things you have to deal with and more things you’re going to end up feeling.  You might say that there are a lot of ‘ands’ — so many, in fact, that there is no room for, ‘I love my child, BUT…’ “ -Rhiannon Fieri

“The central struggle of parenthood is to let our hopes for our children outweigh our fears.” -Ellen Goodman

“The more I read and the more I talked to other parents of children with disabilities and normal children, the more I found that feelings and emotions about children are very much the same in all families. The accident of illness or disability serves only to intensify feelings and emotions, not to change them.” -Judith Weatherly 

I spent much of the last few weeks working on an article about animal-assisted therapy for a magazine by the New Jersey Council on Developmental Disabilities. (Shameless self-promotion alert!)  For those who are interested, the article will be in the Summer 2012 issue of People & Families Magazine.

In that time, there have been a lot of items in the media that caught my eye. I would have loved to comment on them, but then the time passed. Instead, I’ve chosen not to discount the intelligence of my readers. I’ll simply present the information to you in a media roundup, if you will, and then you can form your own opinions. In fact, I’d love to hear what they are (hint, hint: comments section). Enjoy!

From The Stir: Kids With Autism Need to Date, Too. Love is everywhere, even on the spectrum.

Via Cherwell.org: Disabled Keble Drummer Goes Viral. It seems that Def Leppard’s Rick Allen might have some competition.

From the website of the UK’s Daily Mail: Brooklyn Decker wants to adopt a child with an intellectual disability. So the supermodel / actress / Mrs. Andy Roddick is beautiful both inside and out.

An article translated from the original German in the April 23, 2012 issue of Der Spiegel: Fake Handicaps a Growing Problem for Disabled Sports. Warning: Athletes may be more able than they appear.

Per The New York Times: A Chance to See Disabilities as Assets. How to play the D card positively in a job interview.

This is just a small sampling of what I’ve read. Let me know what you think about these articles or the topics they address, and tell me if there’s anything interesting out there that I’ve missed. Until next time, which, I promise, will be very soon.

I came across this story and felt compelled to comment. Here are the basics: a 5-year-old girl named LaKay with cerebral palsy and epilepsy has learned to use a walker after putting in hard work to strengthen her muscles. She’s been using a walker instead of a wheelchair for two years. She fell while using the walker on school grounds. Her mother was there at the time, but the school insists that the walker isn’t safe. After reading the article, and taking a few days to think about this, I have some points to make.

First, falling happens, more often for some than for others. The ground is hard and often unforgiving, but people are resilient. Stopping someone from using a walker because they might fall makes no more sense than denying someone water because they might choke. She might fall. If she does, she’ll stand up. At 5 years old, she’s pretty close to the ground, and children heal faster than adults (a fact that I’m very disappointed to be learning the hard way).  While it’s certainly not something to hope for or to make light of, a fall isn’t an automatic lawsuit. Also, a friend of mine who uses a wheelchair pointed out to me that it’s possible to fall while using a wheelchair. Short of putting her in a bubble or on bed rest, there’s no way to prevent her from injury all the time.

Second, it’s understandable that the school wants to protect itself from litigation, but there are other ways to do that. School officials can have the mother sign a waiver, for example, if they are so concerned about liability. In the meantime, the school should put the needs of the child first. Safety is certainly a need, but there are other, intangible necessities for children. For instance, they need to know how to work for something that they want. Using her own leg power to get from one place to another is difficult, but if she needs to get there bad enough, she will. If she wants to improve her motor function, coordination, and balance, she has to work for it. The walker will give LaKay a chance to do that. Also, as previously mentioned, children need to learn to rebound, to get up when they fall and keep going. A sense of inner pride in their accomplishments is important for child, too, and schools should foster that. This little girl worked hard to transition from a wheelchair to a walker, and to have that accomplishment devalued in this way is cruel.

Lastly, I think it’s worth mentioning that having a disability does not make someone weak and fragile. People with disabilities are fighting to have complete lives. We want access to buildings, like restaurants, shops, and movie theaters. We want to create families and raise kids. Along with all of the joys of life, though, we also have to put up with hardship and pain. That’s part of living life fully. We can’t always be protected from life’s harsher moments. More importantly, it shouldn’t be assumed that we can’t handle the rougher times. LaKay will scrape her knees and cry and be embarrassed when she falls at school, but this happens to all kids — disabled or not. Getting past these more innocent embarrassments may serve her well in the future, when there are other humiliations to move on from.

She doesn’t need to be so overprotected. She’s a kid, but take off the kid gloves in this case and see how she does on her own.

Before we saw the doctor, I had to answer a few questions: Was I allergic to any medications? Have I ever experienced this before? Have I fallen at any time in the past six months?

I looked at Deanna, then back at the nurse. It was a second or two before I could answer her, because I thought she must be crazy. Of course I’d fallen in the past six months. Who hasn’t? Who only falls twice a year?

In addition to a green bracelet that was used to denote admission to the hospital, the nurse gave me a second bracelet. The second one was yellow, and it labeled me a “Fall Risk.” I guess I shouldn’t have been surprised, but I was. I mean, yes, I fall a bunch — I flatter myself by saying that I’m somewhat of a falling professional — but  I really didn’t expect falling more than twice in six months made me a risk for the hospital.

Everything else was mostly uneventful, save for the doctor’s thrilled reaction to see my leg hyperextend during a routine test of my reflexes. “That’s awesome!” he said, before trying the test a second time. I guess a mild case of CP isn’t a typical site in an ER. I was relieved that at least one of us was enjoying ourselves.

Weeks later, I was still thinking about the nurse’s comment. I had told my parents the whole story — from the silver fox reporter to the enthusiastic doctor — but I just couldn’t get over the “Fall Risk” bracelet. Being responsible, mature parents, my mom and dad did they only thing they could. They made a bet with me. If I can go six months without falling, they’ll take me out to dinner.

The bet started on March 2. I lasted 13 days, falling on March 15th on my way into a restaurant to meet some friends for dinner (you can’t say I don’t know how to make an entrance). My parents allowed me a do-over, so I’m working on going six months, fall-free, from March 16th. Cross your fingers for me, and feel free to place your bets, readers.  If you’ve been knocked out of your March Madness pools, this may prove to be an entertaining second choice.

At first, I didn’t want to write this blog. In fact, after I suggested the topic to my professor — remember, this blog started as a class assignment — I regretted it and tried to get out of it. I suggested at least five other possible blog topics after the fact. At my teacher’s insistence, a site focused on disability and disability issues began.

In keeping up the blog, I’ve been able to come to better terms with my CP and my feelings about it. I’m certainly not the paradigm of being well-adjusted, but taking time to think about and vocalize my feelings on issues related to disabilities has left me with no choice but to face some of my own.

I’ve also come to realize that I’m not as different and / or alone in my feelings and thoughts as I once assumed. Though many of the comments on this blog are from people who love me, a few have been from people I have never met. Knowing that these strangers can relate to what I’ve written, and that my posts have given a different perspective to those who have known me for years is incredibly rewarding and motivating. 

Thank you, all of you, so much for reading, whether it’s every week or just once. I can’t tell you how much I appreciate it. I can’t say what the next year will bring, but I look forward to sharing the ups and downs, one post at a time. Here’s hoping you enjoy the blogging adventure as much as I do.

The scary part goes like this: for some reason (stress, according to my father, who considers himself to be somewhat of a zen guru), muscles in my back tensed up. The pain was intense, radiating from my back and down my right leg. After a few days of struggling and a spasm in a crosswalk that brought me to my knees — I later told the doctor that I was Tebowing; he didn’t get it — my friend Deanna and I decided to go to the ER (more on this in a later post). There were some serious painkillers, some muscle relaxers, and, therefore, a complicated and strictly adhered to medicine schedule that Deanna helped me make. I spent a day on her kitchen floor, being unable to stand. When I was eventually able to stand, I used a walker that was in the house in case her 90+ -year-old grandfather ever needed it. At the airport, I was taken around in a wheelchair.

Despite having a disability since the day I was born, it was during this trip to San Francisco that I felt truly disabled for the first time in 26 years.

The pain started before I left — sharp, stabbing pains in my lower back. I dealt with it, meaning that I ignored it for as long as I could. When I couldn’t ignore it, I asked my brother and my host — both therapists — for stretches that might help. Asking for assistance was something that I had to get used to, and that’s not easy. For a week, Deanna had to help me stand and walk, adjust pillows when I sat, help me in and out of bed, cook dinner and clean up afterwards, and smile through it. I honestly think my visit was harder for her than it was for me.

I’ve never been so incapacitated. While a life of leisure does sound desirable, being unable to do any activities is far from ideal. I noticed several changes as a result of my injury. Mood was the first thing that adjusted.  While I did what I could to stay upbeat — to the point where I had to be reminded that an emergency room is not the appropriate place to be making jokes, especially not if you want the doctor to understand the seriousness of the situation — it is frustrating and upsetting to be helpless. It’s also frightening to not trust your muscles to act as they should. I became a little quieter — except for when the painkillers loosened my tongue a bit — and, while I continued to joke around, the tone became a little harsher than before. The bad mood passed quickly, though. Thankfully, it’s hard to stay down in the dumps for long on vacation.

One of the differences that struck me most was how much I’d taken my physical abilities for granted while I had them. Now, readers, you might think that someone who spends an inordinate amount of time writing about disabilities would have a keener sensitivity to the importance of being able to do tasks and actions, no matter how small. I thought so, too. We were wrong. I had been so focused on my lack of balance and the unevenness of my steps that I’m not sure I ever properly appreciated just how well I could walk. So it was with all other movements, whether it was adjusting my position while sitting or bending to pick something up.

Furthermore, while I sometimes feel that my walk makes me stand out, I was especially aware of everyone’s eyes on me when I used a wheelchair or a walker. Most likely, this was all in my head and says more about my insecurities than it does about the thoughts of the people around me. After all, when the situation was reversed, I thought no less of anyone using assisting devices. I reminded myself of this as I was pushed through the airport. Cutting the line to get through security helped to mitigate some embarrassment, too.

After a week resting at home, I felt much better. I’ve been slowly doing more activities, and I’m now almost back to normal. I’m certainly well enough to write regular posts again. )

This post is not meant to suggest that the vacation was wasted or that I didn’t enjoy my time there. Far from it. Deanna and I went salsa dancing (I put that under the heading of “normal activity,” which I was encouraged to continue), we checked out an 80′s power ballad sing-along, we made yogurt and granola from scratch (I stirred, Deanna did everything else), and there was a few memorable games of mahjong. Just as importantly, the trip made me grateful what abilities I had and especially appreciative of the selfless, constant love of my best friend.

I’ve got some great vacation stories and a better outlook than before I went. Who could want more out of a trip than that?

I’ve been stuck on stairs before. If, for some reason, I start to feel unbalanced or I don’t trust the railing to steady me, my leg muscles will tense up. This makes it impossible to move. I’m forced to stand frozen, mid-stairway, clutching the railing with two hands while I focus on breathing slowly and trying to relax. I distinctly remember this happening in the Tufts campus center, during the busiest part of the day (obviously).

There are other ways to freeze up, too.

Since graduation, the prospect of what to do next — how to find a job I.T.E. (in this economy), how to structure a day now that I don’t have to contend with any classes — has been intimidating. Sometimes, though, it’s not major life changes that lead to that frozen feeling, but instead, it’s a constant such as a disability. There could be fear of embarrassment, fear of pain, and insecurity that prompts us to stand still or step back rather than move forward.

I can offer no advice as to how to fix this. I can only hope to provide some sense of companionship and understanding. There are no shortage of things that hold us back or freeze us in our tracks. As with that experience in the campus center,  it helps to take some deep breaths. Muscles will relax enough to take the next step, even if you have to use two hands to hold the railing as you move — slowly.  Spring will come eventually, and as weather warms (or as you begin to feel more comfortable) things will naturally unfreeze.